Good parents don’t

I don’t normally choose to write about things that upset or unnerve me until I can look at it with humour, but this evening is an exception to the rule.

Days like this make me hate campaigns for autism support that paint the experience like it’s some sort of joyful gift that brings nothing but love and newness to your life. That parenting a child with special needs is amazingly awesome and no one in their right mind would have it any other way. Stuff like that fucking Holland story that has been forwarded to me a hundred thousand times by parents who have never experienced this who oooh and ahhh and tear up like they’ve been enlightened to someone else’s glamorous secret life after they read it.
This is not sunshine and rainbows. This is tears and self-doubt. Guilt and anger. Lack of empathy, lack of understanding, and desperate loneliness.

Evenings with Tempest are hard. They seem to get harder the older she gets, and I really wish it was the opposite. I know and recognize that part of this problem is our expectations and ego: as she gets older, there is more pressure on us and on her to be “normal”… and it makes her differences more glaring.
It’s glaring every time our phone stays silent every single weekend. Every single pro-D day. Every single holiday. Every single summer break. Because no one, not even people I know well who have kids her age, want to have their kids play with her.
It’s glaring in a report card that grades her on her amazing math and reading skills, but berates her inability to use art supplies because she “is too sensitive” and “doesn’t want to get her hands dirty”. It grades her on her social skills, which a friend once put as on par to grading on personality, and how she’s unable to make friends ‘appropriately’ and focuses entirely on the one kid who will pay her positive attention.
It’s glaring every time she has a tantrum and public meltdown that results in her kicking and screaming like she’s being murdered, shouting meaner and more jarring blows to our fragile parent egos as she gets older and becomes more aware of how words can hurt others.
It’s glaring every time I have to set time aside when she makes a new friend on a playground and approach their parents and explain to them why she acts “funny”… and watch them pretend to understand, pretend to be caring, pretend to be accepting only to do their best to forget we existed as soon as we walk outside of their peripheral vision.
It’s glaring every time someone I actually have a connection with moves away, and we’re left with one less person who will tolerate our family’s quirks.

This afternoon was Tempest’s last day of school. She brought home all her work in giant folders and, as we normally do, we sat down on the bed and went through it. She read me selects from certain folders for english and socials. She talked to me about her last field trip and how she held a jellyfish in her hands. She showed me little doodles and talked about what classmates had said to her. As we went through the work I occasionally put a piece aside that I wanted to save in our special file for scrapbooking her school years one day; about half a dozen to one dozen per year, the rest goes in a pile for recycle. It’s the same routine every year. We can’t let her keep her work in her room because it quickly becomes an object for her OCD: she begins to horde, then obsess, and soon it causes anxiety attacks because it’s not in the right place, it’s not enough, it isn’t right, or one got lost. If we don’t keep a careful, and strict, control on her collections and keepsakes… her anxiety level shoots through the roof.
At the end I brought out her class photo and a pencil and asked if she’d help me name everyone. I write all their names on the inside of the frame, or on the back, so that years down the road she can still remember each child. This part is easy: she always remembers everyone’s names, how to spell them, and usually even their birthdays.

I was pulled away part way through this to nurse Zephyra. That turned into putting her to sleep. Turned into me needing to eat some food. Turned into Tempest playing a game with Curtis. Turned into dinner time… before I knew it it was three hours later and finishing this meant we were getting way past the time that her medication had worn off. Everything is raw now, and it’s like walking on eggshells for the rest of the evening.
With much prompting and redirection we finally get to row three of the kids in her class photo. I point to a young girl who is, from what I recall, a South American adoptee. She has a name that is difficult to pronounce and doesn’t use English phonetics. Tempest can’t remember how to spell it. I see her start to panic, and try to redirect her.
“It’s okay, let’s go to the next kid. Who is this guy?” I point the pencil at a freckle-faced boy sitting next to her. But Tempest isn’t listening. She leaps out of her chair and goes to grab something from the pile of papers that was on the dining room table an hour ago, but has since been recycled.
“Where is my writing book!?” she asks. Her voice is high-pitched and desperate. It’s already too late; I’ve lost her.
“We recycled your old schoolwork earlier, remember?”
“I need it! I need it! I need it!” She’s screaming now. Crying and hysterical. There’s no slow build or opportunity to step in… it’s 0-60 in half a second.
“You do so much amazing work, we can’t keep it all! That’s why we spend the time like we did this afternoon to look through it, and read it, and save some really special parts. Remember? We do this every year, and we have a great folder full of the most important pieces.”
“My writing book! I needed my writing book! Get it back!”
“It’s in the blue bin outside. You saw us put it in there with the rest of the recycle after we looked through.”
“I wrote her name in my writing book! I would know how to spell it if I had it back! You can’t throw ANYTHING away!” Her tone is mean now, which means she may get unintentionally violent soon. We have to stop being accepting and start being firm.
“Tempest,” Curtis says her name firmly. “It’s just fine if you can’t remember how to spell her name. We can find out another day. We can’t keep all your work because if we did we’d have no space in the house for anything else!” His tone lightens up toward the end. It’s no use, she’s lost… now she’s screaming incoherently, and slams books to the floor.
Curtis takes a breath and says softly. “I think you need to spend some time in your room calming down”. This isn’t a ‘time out’ in the traditional sense, it’s a removal from all the stimulation of the dinner rush.
“No!” She runs to the livingroom and sits on the coffee table. She starts frantically gathering papers, still screaming hysterically.
“If you can’t go to your room to calm down, I’m going to have to take you.”
“NO NO NO NO–” endless screeching. I stop what I’m doing in the kitchen and walk toward her. She sees me coming and points a pencil out to me, held between her thumb and index finger. I’m not entirely sure why as it doesn’t look particularly threatening and she’s never been one to be intentionally violent or defensive toward us, even during these fits.
I try to take the pencil from her hand but she yanks it back. It cuts my hand. I take her hand firmly in one of mine and remove the pencil with the other. She’s screeching and kicking at me as though I’ve hurt her horribly. Once I get the pencil away I try and guide her off the table toward her room; not saying anything because I know if I try to speak I may yell. I’m angry. I’m angry that she won’t listen, that she acts this way. I’m frustrated that it comes to this every night. I’m sad and disappointed that the rest of the evening will be a constant battle: once she’s gone up and out of control just once, the entire evening is a bust. She’s like a stick of dynamite with no fuse once she’s blown… there’s no coming down.
Every time I get something out of her hand she grabs another. I end up having to pick her up in my arms. She shrieks at the top of her lungs. My ears ring.
“Please do not scream,” I say firmly. “Zephyra is sleeping and is very tired right now. We will both feel very upset if you wake her up.” It’s a lost cause and I know it. I’m just saying it to know I said it… she won’t stop now. More shrieking. I carry her to her room, kicking, shrieking, with a hand over her mouth so that my migraine won’t get worse in the next 30 seconds. She kicks enough to succeed in getting out of my arms just as I enter her room. She runs into her bed and makes another loud scream just as I walk away. I shut her door and say as kindly as I am able to muster, “If you feel like you need to scream, that’s okay, but please do it in here into a pillow. Come back out when you’re feeling like you can be calm.”

It takes her 15 minutes of screaming, tearing things apart, throwing things, kicking and crying for her to finally come out. There are no apologies, there are no rational explanations and discussions with hugs and kisses at the end… the slightest slip will result in another instant meltdown with no warning. We repeat this cycle another 10 times before the hour is up. The next major meltdown is about going outside to play. When Curtis reminded her that she is not allowed to play in the neighbor’s yard (not the dog neighbor, another one) she flips out and eventually loses her privilege to play, as it took so long to negotiate through the tantrum that now it’s too late to be outdoors. It takes her an hour of back and forth to come down from that one. By the end of it I threatened to take off her door and put it in the garage if she kept slamming it. She can slam it so hard my ears pop.
An hour after that is quiet time, a house joke at this point as it is neither quiet nor does it take place at a set time. After that is room cleaning time, which generally results in Xan doing half the cleaning and being beat up the rest of the time. The tantrum level from Tempest is about a dozen in a half hour at that point. If she can remain calm-ish through most of the evening, and not be destructive or violent, she’s rewarded with special time for a game with Curtis. If not she has to read quietly (to herself) with us. Her bedtime is at 9pm and she’s often still up at 1am. The wind down takes hours, and hours, and hours…

Throughout this she’s unreachable. She moves in quick, darted movements. She hits herself. She walks on her toes, makes strange noises, stomps, hits the walls for rhythm, has zero impulse control and destroys anything she is near for longer than a few minutes. If we so much as try to let her brush her teeth on her own… the clean up time is at least a half hour.

We do this every night. Every single night. It’s exhausting and frustrating and depressing. Sometimes we handle it with grace, but often we don’t. Sometimes we switch off in 15 minute chunks while the other sits in the bedroom crying, regrouping and pretending that we have confidence to continue parenting for another day.
This isn’t a magical fun ride to Holland, it’s a slow train to hell. I don’t enjoy this happening all the time. I don’t enjoy going to the family therapist and the counselor and the psychologist and sitting there with a notepad going through this a hundred thousand times and trying a hundred thousand different approaches to making evenings easier without any real success. Believe it or not, this is actually the best it’s ever been.
This isn’t “different is fun”: it just sucks. I love my daughter. I love her uniqueness and her spirit and her joys and her interests: but this still sucks. It sucks if for no other reason than knowing she may never, ever have a sleepover.

Whoever said this is magical can go fuck themselves. I don’t feel like a magical special snowflake of a family this evening.

Comments

comments

158 Comments

  • hoodwink says:

    I work at a residential/day program/school for children/teens/young adults (ages 8-22) with special needs. It broke my heart to read this entry because I’ve talked with other parents about how difficult things can be at times and how they love their child and want the best for him or her. but at the same time they feel so many negative emotions. I can feel your pain and hurt. but I also love your raw honesty and love.

    It sounds like it is extremely frustrating and difficult. I can’t imagine being in your place, but I do know how difficult it can be at times when I am working with a student who can’t calm down, who can’t focus and who can be exceptionally mean or even violent (towards others or themselves). I have to remember to not take what they say or do personally but it’s still hard sometimes. I’ve cried over something a student has said to me or done to me. or done to themselves.

    Last summer I worked with toddlers who had autism. I did ABA therapy with them as an early intervention service. It was an amazing experience (the company sucked, so I left after just 5 months) but the job was so rewarding) to see how fast the kids could learn and how much it helped them in their day to day lives. I worked with toddlers who had no language and others who after their ABA program was over, no longer tested “autistic.”

    I am currently looking for another ABA job and have an interview on Friday for a job that includes home visit ABA sessions with school aged children. While I’ve worked with children of all different ages now, I am nervous, but I know that ABA can be helpful at almost any age, so that kind of makes me feel better.

    I just wanted to say hang in there and I wish you and your family the best. It won’t be easy but it will always be rewarding in one way or another. I don’t know if Tempest receives any services now or how that works in Canada but it still may be worth looking into if you haven’t (I have been reading your LJ for years but don’t always have time to check it and may have missed something in a previous entry).

    *hugs*

  • Hello,

    I’ve seen you around for a while and always wanted to friend, but am such a lurker that I would just shy away. This entry made me go ahead and ask. My best friend could have written this entry, it sounds so much like her daughter that it made my heart ache for you just like it does for her when she tells me about a rough evening or day she has had.

    Hope it is okay to friend, if you would rather not, just let me know. Thanks.

  • psyko_kitty says:

    I don’t read your blog that often anymore, but I wanted to see if you had your baby. Congratulations.
    . . . and then the stuff about the hoarding. . . and the tantrums about thrown out schoolwork. . . and the teachers comments on the social stuff. . . and just. . . yeah
    My six year old is such a sweet, wonderful kid, but the “sensory” stuff is hard. He’s “high functioning” or whatever and still it’s so hard. I read your description of an evening and it just exhausts me. I’m grateful that, even though it still takes him hours to come down in the evenings, he can pretty much do it on his own and he almost never tantrums at bedtime. So sorry for what you’re going through.
    There is a difference between loving our children for who they are and accepting them living a life that is clearly not joy-filled for them. One is the imperative of good parenting, the other is just burying your head in the sand and ignoring your child’s suffering. ::hugs::

  • Anonymous says:

    How old was Tempest when the signs of autism started emerging?
    (I usually read you on OD)
    TrippyNina (Christina)

  • fallingwthu says:

    Re sleep overs

    Way back when my oldest was young enough for sleepovers we had one of her good friends over.

    She has ASD, and her dad had written out a list of things we had to do or keep away from her so she wouldn’t get distracted, upset or off balance (their words not mine) when the friend arrived, i was well prepared to keep her calm or if she needed an extra bit of “me” time I allowed it. My oldest totally understood her too.

    Here’s the thing, she arrived and had a list of things the kids were supposed to do: eat pizza, chips, etc, play skipping rope, talk all night long. It was (for me) a funny list, but she was serious.

    They didn’t get to do all the things he listed, and I could see how it would upset her. so we promised her to have her over another night and we did within a couple of weeks and they continued that list.

    Sadly, the family had to move away back to the US, but we’ve kept in contact with the kids and family. We made such a great impact that Jennie will just call my daughters up and talk via skype and they talk about how they loved to sleep over and Jennie said my child was her only good friend.

    I do hope this little story can put a little light in your tunnel as I think she’ll have sleep overs.

    And we did have one moment where I was shocked and dealt with it. A doll head came off the doll (barbie) and she wouldn’t hold it, or want it, or even be in the same room with it. Frightened her a great deal, soon as I hide it away while she wasn’t looking she felt such great relief.

    Anyways, I hear ya, I do not raise ASD children, but I understand it isn’t easy. Heck, I have kids who put up a fight every night as well, (for different reasons) and I think I want to throw in the towel.

  • nicolechan says:

    I’m sorry you all have to go through this. It’s just not fair! I can only imagine how hard it is to deal with a situation like this. I wish I had more to offer than e-hugs.

  • Anonymous says:

    ::Hugs:: I know hugs won’t make handling these situations any easier, but it’s all I can offer. It also makes me feel better to know I was in the right to chastise a friend that described Asperger’s as an “excuse parents make for their children not behaving” and a “weird twisted gift.” I could have slapped her.

  • I’m a little late replying here but I was compelled to comment. My son, Austin is almost exactly like how you described Tempest. Austin was diagnosed as ADHD with OCD as a comorbid condition at three, almost 4. His worst years so far were 4-5. He is seven now and was IQ tested a year ago in Kindergarten. His IQ was found to be 142-148 (there are several areas). I petitioned for GSP services and once he began gifted services he began to blossom. There are still issues. He still toe-walks, stims and is socially awkward. I stress about the inevitable coversations with new teachers and friends about how he is “different”. Nobody will address the toe walking, tics and stims, anxiety and fine motor/coordination issues.
    I feel like nobody knows what is “wrong” or can give me any answers.
    The tantrums and walking on eggsheels subsided greatly six months ago when we switched to a different medication (Intuniv). I believe the stimulant medications made his anxiety issues worse and this medication does not have that effect.

  • inertiaflux says:

    I am a PCA for a autistic little boy, he was adopted by my adoptive family. I honestly get really sick and tired of people acting like that, how special it is, how fun it is. No it’s NOT, every day is a struggle, every day you will probably get bit, kicked, scratched, or spit at. He is 7 years old, but mentally 5, and cannot speak except for noises. It’s NOT easy and I resent parents, and other people who think it is. Yes, he’s adorable when hes starting to learn a word and he smiles because he’s getting it. It’s cute when he laughs because he’s learning how a bike works so he can ride it. But it isn’t not shits and giggles all the time.

    • admin says:

      It’s actually kind of a relief to know that even sometimes aides feel this way as well. I hear SO MUCH bs from people in your position (or similar) who say things like, “In my experience all they need is extra love!” and as parents you want to break down in tears because they only see your kid for a few hours, generally on their best behavior… so, it’s a relief to hear someone NOT say that and admit it gets frustrating even in a limited capacity. Thank you.

      • bluealoe says:

        My sister works as an in-home behavioral therapist for autistic children. Generally she doesn’t talk about specifics, due to privacy issues, but I’ve seen her come home exhausted and covered in bite marks. She’s been stressed out and desperate to find *something* that will work with a particular kid. She loves her job and it’s very rewarding, but it’s pretty clear it’s not all fun times.

        • inertiaflux says:

          Yes sometimes when I run into people who don’t understand a giant tantrum in public…I kind of want to say yea he’s super adorable but my scars let me show you them. It is rewarding but…it’s an up hill battle often.

  • the_ambience says:

    I just want to say, that since I have been reading your journal, that I have been completely educated and inspired by you. I am 23, unmarried, and not going to have children for quite some time, but it is because of you that I have suggested to many of my pregnant friends to not let doctors convince them that they can’t give birth to their child naturally or whatever way they choose to.

    I don’t have a lot of experience with any special needs children, but I can imagine the immense frustration that you, your family and Tempest encounter every day. My brother grew up with ADD and I remember my mom trying to get him to do homework at night…it was a 7 hour battle. The homework never got done. I do not blame you for putting boundaries on Tempest to try and cut out any triggers for her, that is what she needs. Not all children are made equally and those parents who think you don’t love your child enough or aren’t compassionate enough need to suck up their pride and realize that they have NO idea what your situation is. I do not doubt that you love your daughter and that you praise her good behavior and the wonderful things about her, but there are probably a LOT of things that you wish she could just cope with, like any normal person.

    You are truly and wonderful mother and the fact that you can be honest with yourself about the frustrations of your struggle is just one more reason why.

    I hope that Tempest can one day find a happy medium where she can cope with her ASD in an almost normal way. She is a beautiful and bright little girl. πŸ™‚

  • victorymarch says:

    I read the Holland thing. I didn’t read through all the comments, so I’m not sure if you’ve seen this, or anyone pointed you in this direction, but have you read the “Holland Schmolland” rebuttal?

    http://www.autism-help.org/story-holland-schmolland.htm

    I can appreciate people seeing the bright side of things, but I wonder if they realize just how much stuff like that can de-legitimize your struggle. It is so important to acknowledge the aspects that are terrible, that are a struggle, that are just plain fucking difficult. It’s amazing what people will try and apply a silver lining to, as well! I noticed one of your commenters talking about having anorexia talked about as a “learning experience”. What kind of fucked up shit is that!? I know it’s not nearly the same thing, but there were a lot of issues with my younger sister when I was growing up- drug abuse, mental illness, violence, etc etc etc, and people would say things like “At least you’ve still got two good daughters.” Yeah, as if that erases the pain and heartache at helplessly watching your child destroy the life you worked so hard for her to have? It’s nice that people want you to feel better, but it takes away from the struggle and makes you feel like you should be grateful instead of powerless and struggling. Blech.

    Vindication is much more helpful than platitudes. Acknowledgment of struggle, strife, and the issues you’re facing is not only deserved, but required at times like this.

  • thank you thank you thank you. EXACTLY HOW I FEEL.

    I am forever trying to figure out how to deal with this shit/vent about it without parents coming in and saying things like “yeah ___ was over tired too last night” they make me want to throw things at them when they say that. ITS NOT LIKE THAT!

    Also why don’t people fucking respect my wishes? If I specifically say a certain thing isn’t allowed in my house I said that for a reason. It becomes an obsession and it takes over our lives.

  • j_lew says:

    rather selfishly ( and irrationally ) wish you could of written this 5 years ago when I was getting my ass flamed on autism comms for saying the same thing. back then it was the ‘in’ thing to say how much you JUST lOVED your kids “uniqueness” and to be upset about it at all, well that meant you just couldnt possibly love or accept your kid because AUTISM is all they are and it defines them!

    I can see my sons ‘real’ personality sometimes, cheeky, clever, mischievous but most of the time he’s locked behind this thing, hes 15 this year, he cannot speak more than a few words, cant wipe his own arse, knows no danger and is like a toddler in a teens body. will NEVER live independently, and worry over what will happen to him should anything happen to me shreds my heart and soul daily, yet I was told by some hideous smug bitch ( who had deemed her kid autistic cos he didnt like washing his hair ) that I should see all this as a gift?

    fuck that.

    if I sound bitter, its because I am. but thank you. x

    • admin says:

      I don’t know what’s worse: those who act like it’s no big deal and can’t possibly be as challenging as we say, or those who claim their child is (or they are) autistic because they’re “quirky” and start putting cute little words on it like ‘aspie’ and acting like it’s a new fucking fad.

      • crunchynurse says:

        Are you talking about people who self diagnose? I kind of cringed a little because I use that word. Only because it is easier to type. My son does have a formal diagnosis though. I wouldn’t want in on that fad! LOL

        • admin says:

          Yes and no… a lot of people legitimately self-diagnose and do their best to cope. Though most of the self-diagnosing-with-Aspergers community tends to do it because they’re socially awkward, not because they legitimately struggled throughout their childhood. I’m talking about the people who self-diagnose because they did a quiz somewhere, or read an article, and have decided that having Aspergers is “cool” and then bring it up whenever they can to excuse every bit of rude behavior, or they go out of their way to very obviously ‘act’ the way they perceive people with aspergers should act. I see it a lot on AS communities, and I can’t stand to be near them as a result. With all the shit I went through in childhood… all the pain and frustration and rage and therapy… it’s an insult. A huge, fucking insult.

        • chem_nerd says:

          Yeah – I actually have the diagnosis, but I also use Aspie a lot of the time because it’s faster to type, and a combination of dyspraxia-induced coordination problems, a fiery passion against text-speak and, indeed, many common and accepted abbreviations, and an inability to accept a typo and move on – abbreviations that don’t drive me nuts tend to be used a lot.

  • Anonymous says:

    very well

    why not:)

  • I can’t recall what meds Tempest is on, but if it’s an ADHD med, those evening crashes can be hideous. My 9yo son is on Concerta, and it was recommended that we look into an herbal supplement called Nurture & Clarity that has had a promising scientific trial on ADHD kids and can be taken alongside meds. It was suggested as a means of helping lessen or eliminate those evening crashes as well as help out with the appetite loss issues we’re having. We are giving it a try this summer, and hoping that by the time school starts up it will be having a positive affect on him. He’s not consistently taking Concerta this summer for a variety of reasons, so I don’t know if the supplement will help with those behavior crashes or not…yet. I have, however, seen some behavioral improvements since he started the supplements…but it’s too difficult to know whether it’s that or the change in routine or the 9 hrs of swim team practice every week or what. Hopefully we will know this fall and if you’re interested, I will let you know what our conclusion is.

    • admin says:

      I wish she was still on Concerta, it worked SO WELL for her. :-/ But it’s not fully covered and we can’t afford it.

      • Check into the “generic” that just came out…at least here. Don’t know if it’s available in CA but here it’s actually the exact same drug manufactured by the same company, just distributed by another company (there’s a long explanation as to why). Our insurance didn’t cover Concerta totally, but they do cover the “generic” in full. It just came out in May, I think.

  • Anonymous says:

    sounds just like my house!!

    I have been reading you since around the time Tempest was born. I started reading you on Open Diary. I don’t think in all these years that I have ever left a single note, but this entry just got to me. I have a son who will be 7 soon and he is on the spectrum also. He has been tentatively diagnosed with Aspergers. I understand every minute portion of your description, even the parts that you didn’t write out. I have no magic answers. I can only say that you are not alone. I understand the overwhelming grief that goes along with knowing that your child is going to experience intense pain in his interpersonal relationships, if he ever gets that close to anyone. Hugs!!

  • lalicopa says:

    I’m so there with you. It’s so very difficult. I know she’s on meds and I remember reading recently that she asked if she could take her meds at night as well…is that an option?

    My son recently went on medication and it’s done wonders for the entire family, because my stress level is so decreased from not having to deal with his extreme tantrums and constant questioning and interrupting.

    Granted, I don’t know what meds she’s on or what the indications are, but it would seem to me if it’s such a nosedive once it wears off, that she should be kept at the same level as steadily as possible 24/7.

  • bluealoe says:

    I just spent a week with my five-year-old nephew. He’s a great kid; he’s smart, funny, creative, sensitive, and I love him more than I can put into words. However, he’s also frustrating as hell. He has to have things JUST RIGHT, and if someone does something that goes against his mental image of how things should be (like, say, putting ketchup instead of mustard on a hot dog), he absolutely flips out. When he gets upset, it’s like he descends into his own world, and nothing we do can retrieve him. The only thing that helps is just ignoring his tantrum and let him cry until he’s done, and that only works part of the time. Bedtime is a special kind of hell, involving at least an hour of nonstop screaming.

    Through it all, only two things kept me from simply strangling him; he was away from home and not dealing well with the disruption in routine, and I know he’s actually much better when he’s home. The second thing is that I know this is actually fairly typical behavior for five-year-olds, and most likely he’ll grow out of it. (My mom says I behaved the exact same way at that age.) I just kept repeating, “It’s a phase, it will get better.”

    All of which is a long-winded way to say that dealing with a neurotypical child can be frustrating and exhausting and make you question your competence as a parent/grandparent/aunt/caregiver/whatever. But at least you have the knowledge that they will probably grow out of it. With a child on the autism spectrum, the future is a big unknown. There’s still hope, but there’s no guarantees, or even likelihoods. All you can do is struggle on, and keep doing the best you can.

    *hugs tight* I’m not going to say I understand what you’re going through, but I feel for you, I’m thinking of you, and I love you and your entire family. If they lived closer, I would totally take my nephews over to play with your kids with no hesitations whatsoever.

    • admin says:

      Thank you, Blue. And yes, that’s definitely a big part of it: the unknown future. I have no idea if she’ll be a perfectly well adjusted young woman, or someone with so many problems that she ends up in a residential treatment home… and that scares me to death.

      • bluealoe says:

        No one can predict the future, obviously, but as long as Tempest has a loving and supportive family willing to fight for her and help her cope, I think she’s going to be an amazing woman.

  • gardenmama says:

    This entry resonates with me on so many levels. My first thought was, “I guess Tuesday (when I totally lost it and was literally begging random parents to take my children home with them) wasn’t as bad as what Heather is going through.”

    It resonates with me on a totally different level that I feel guilty for. For years, we were the parents who didn’t want to be around the nephew who was eventually diagnosed as ASD/Aspergers. Family gatherings were awful, and insults were flung far and wide about parenting skills. We weren’t the only people in the family to say that if only they spanked-disciplined-etc-etc-etc he wouldn’t have tantrums like that. Now he’s on Concerta and Risperidol (sp?) and in a school for kids with special needs, and the family is a lot more understanding about not throwing him for a loop, and we can finally get together with the in-laws again. In the meantime, relationships with my two nieces weren’t even formed, but are coming together now πŸ™

    And lastly, this made me think of one other aspect to this situation that you didn’t mention. The affect that having a child with special needs has on any other siblings. I swear that with all the attention we need to devote to our older son, I’m surprised that his younger brother ever learned to walk or talk or do any of the other things he’s so good at. Actually, maybe it’s not surprising that he’s so self-sufficient at four, he’s had to be πŸ™ I’ve been glad to get to know him as his own person in the past two years since his older brother’s been in school, but I still spend every day dreading the phone calls that come home from school.

    Also, I know what you mean about not journaling about your daily aggravations. It seems to give them too much power. But then I find that I’m never writing in my journal. I want to be able to use it to type out my thoughts when I’m frustrated with life. Feeling comfortable and happy doesn’t make me want to sit at the computer and type about it. But I don’t want my journal to be a record of how much my life sucks.

    I haven’t seen the Holland story you refer to, nor do I know a reference to magical special snowflakes. The phrase I most often hear that makes me grit my teeth is “If you know one kid with ADHD/Autism/Special-Needs, you know one kid with ADHD/Autism/Special-Needs.” I don’t particularly want to be isolated in my own special bubble with my unique special needs kid. I know there’s no magical solution that worked for someone else that will work the same miracle with my kid, but it helps a lot to know that there are other parents who lock themselves in their bedrooms when they can’t deal, and who cry themselves to sleep at night feeling like an epic parental failure.

  • Anonymous says:

    I read about a behavioral modification app for your i-whatever

    meant for teachers and caregivers (parents?) where ABA theories and applications are tested against common situations. I don’t know if that would be interesting or helpful to you and Curtis. Behavioral modification methods seem to be the most reliably successful approaches in dealing with ASD kids, which I think you must already know since you’re trying your hardest to shape Tempest’s behaviors to be more successful.

    My 2nd DD is not on the spectrum, but shares many of the challenges you face with Tempest (although certainly not to the extreme you’ve described). We pull doors off hinges in our house after the 1st slam. Recently I rehashed a tantrum with this daughter the day after living through it, and identified some of her behaviors as stemming from her incredible stubbornness. She took that as an insult, but I feel it is a fact. Temperamentally she is incredibly stubborn and has been since birth. This is going to be a blessing and a curse for her. She is only 9 and can’t see how it might be a good thing, but we frame it for her this way.

    Tempest’s challenges in making and keeping friends would break my heart more than the evening tantrums because I think that’s harder to address. We chose to medicate my eldest daughter’s ADHD because of social issues and her negative behavior toward us and her sister. In two years she has gotten much better at socializing, but it is usually her choice to stay home on weekends and not initiate social contact. Her behavior at home is much, much better and she and her sister sometimes even play together happily (they are 26 months apart). I’m thankful for this, and for when I see her establishing friendships and hopeful that she’ll eventually want to spend free time with folks other than us.

    I hope you are able to find a nighttime medication that works for your family. Tempest would prefer, I’m sure, to live without the tantrums and anxiety in the evening. And I know the rest of you would welcome that as well. {{{{HUGS}}}} to you.

  • devilgrrl says:

    Four o’clock is our witching hour. We literally could almost set a watch to it.

    Add me to everyone else who’s been there and understands. I hate the Holland story; it’s not Holland, it’s a crappy little sandbar on a cold, drizzling day with the tide coming. My stepson is ASD and we’ve been through a lot of the same issues. You love them and you learn to adapt, but it doesn’t suck any less.

    • jenrose1 says:

      I’m all about the pregnancy-as-journey metaphor. It just seems that more often than not it’s a ride on a friggin’ seasick camel through the desert without a map. And actually living with my special needs child is a lot less like Holland and a lot more like living in a big wack-a-mole game, where I’m the mole.

  • Anonymous says:

    I’m so sorry

    I know what it’s like. I was a behavior therapist for kids with autism where we used to live. Do you have any ABA therapy options there? It sounds like you are doing everything right. Once a tantrum explodes they really just need to cry it out in a safe place. Afterwords when they are very stimmy it helps to do very mundane routines, speak in few words, use pictures for direction, and a timer to signal that it’s time to start a new task. It also helps to reduce intervals between tokens and rewards. These are all ways to prevent a tantrum if you can see one building too. Before my training I really had to see it to believe it though. I hope you can find a way to get through the evenings more peacefully though, whatever you decide to do. -Fran

  • crunchynurse says:

    Homeschooling an aspie

    I also get the joy of watching my son take 2 hours to do four math problems. I could set a visual timer if I want to hear him scream and tell me that he should have unlimited time. Right now I just want to slap him in the head. And I feel like a sucker for only making him do four math problems instead of 10.

    • admin says:

      Re: Homeschooling an aspie

      With us it’s restaurants, or going out to the bakery. Getting her to pick something off the menu is ridiculous. If we don’t walk up saying, “Okay, they have x y and z and you have 3 minutes to choose what you want” with constant prompting and explaining every 15 seconds or so… it results in a fit, and no food. She can take days to choose. We’ve had to print out menus or take home copies so she can pick DAYS IN ADVANCE if we go out to dinner.

      • crunchynurse says:

        Re: Homeschooling an aspie

        The math thing has two components. He has legitimate issues with focus and attention. I get that multi-digit multiplication has a number of steps in each problem and he gets lost in the process. The other component is what my autism specialist calls “lack of respect for other people’s agendas.” That causes him to not try very hard to work through the attention problems. He doesn’t give a crap, and he doesn’t respect my authority to assign schoolwork to him. Don’t I know that he should be entitled to do whatever he pleases all day long?

  • _delphiki_ says:

    I understand what you’re going through. My son is like this all the time. Even good days are days when I hope the explosion happens at home. We’ve had exactly one good day his entire life and I wrote about it on my LJ. It’s heartbreaking and soul damaging to raise a kid that needs so much.

    Oh and the OCD shit. I get that. My son hoards everything. He is only allowed a set number of things he can own because he just gets out of control with it. He also hoards food so all food intake must be monitored closely. I can’t look away from him while he’s eating or he’ll run and shove food under the couch or somewhere else. He doesn’t have a logical reason for this and it isn’t because he’s hungry.

    • admin says:

      The hoarding thing gets out of control SO FAST if you’re not on top of it. It’s not about the “thing” it’s just about anxiety, and this weird sense of safety. Like with her schoolwork: we can’t keep it around for longer than a day or so otherwise it becomes an object for OCD and anxiety. We have to have a special goodbye for it (hence the going through each piece together) and then GET RID OF IT. I mean, christ, the trouble we have simply with pictures that she’s coloured in from colouring books or internet printouts… back before when we used to think, “It’s no big deal!” their room was covered in tiny little torn up pieces of paper 100% of the time. It looked like a dump. And then she’d freak out all day and all night because she kept finding pictures that had torn edges, or were ripped, or Xan had stepped on… it’s just this constant anxiety loop. So now we have stupid rules about how long pictures stay around. They’re fucking stupid, but you know what? They work. Now she doesn’t have OCD panic attacks around drawings anymore and she can actually enjoy doing it. But that doesn’t mean I don’t feel like a dumbass for having rules about shit that no one else does.

  • allenjaphy says:

    Good partners don’t…

    My husband was diagnosed with asperger’s this past Feburary, at 31. He also had severe ADD. This is not easy shit, what is easy is that I know I love him, I know that he’s had asperger’s since we met, just not named. Now, he’s scared that he will be alone, that he doesn’t and cannot read people well. He had rather wild mood swings, and more often then not they do _make sense_ they are logical, but our three year old daughters are not always logical, nor am I. He’s lonely.

    I found a book, 22 rules for women who love men with asperger’s or some shit. The book says, he’ll forget birthdays – so make your own friends, he’ll have trouble committing – so you’ll have your own life, he won’t want children – so have friends, he won’t want sex – masturbate. written by a women who dated a man with asperger’s and then got a dipolma is autism studies or something, she didn’t marry someone with asperger’s, didn’t have children with him, and didn’t hurt for him when he felt that his whole life changed at 31. She cast the role of the AS person as one single set of behaviors/thoughts and the rest be shunned.

    I love Jed’s mind, I love his passion, but this is hard hard work. Also anyone who calls me neurotypical may be strangled, the moment we have mental/neuro illness and mental/neuro typicality, is the moment we are all crazy. I have no idea if either of my daughters have any AS or ADD traits, if they do we will do our best as parents to make the informed choice for them until they can consent themselves. We are all, all parents just getting by moment to moment hoping we made the best choice a moment ago.

    • admin says:

      Re: Good partners don’t…

      Thank you for sharing this. I realize that sounds trite, but I don’t want to pass vulnerable stories like this by without saying something.

    • gardenmama says:

      Re: Good partners don’t…

      This made me LOL. What is “neuro-typical” anyway? Don’t we all have our own coping mechanisms for the things that we have a hard time dealing with? Just because we function “normally” in society, doesn’t mean we’re “normal.” My husband never realized that I’m OCD and that I count things constantly when I’m anxious and overwhelmed. After all, I don’t count out loud! He just thought I did things the exact same way every time because that’s the way I do things. I was well into adulthood before I realized why other people don’t do things the exact same way every time. I remember getting teased for always opening a piece of gum the same precise way. I got good at hiding those quirks from my friends, while wondering why they didn’t. After all, once you’ve found the perfect way to do something, why would you do it a different way πŸ˜‰

      My husband has found many of his childhood traits to be similar to the issues our older son is having. Now we’re getting “labels” for these things and he’s starting to question whether or not he’s normal. For fuck’s sake, he’s in the medical profession and is a respected member of our community, but he still remembers the teasing he received as a child for being “weird.”

      Life sucks, and there’s no such thing as “normal”.

    • jenrose1 says:

      Re: Good partners don’t…

      That list… *headdesk*

      DH figured out it might be Aspergers or similar around the time I was getting to know him. So I’ve known from the get-go.

  • tastyanagram says:

    Reading your posts over the years have made me much more sensitive to “invisible” difficulties like what you describe. Thank you for that. And thank you for being such a loving parent to Tempest even though there’s no way to get it “perfect”.

    Totally unrelated: NEW BANNER! *squee*

  • smellykaka says:

    Sometimes I wonder where you find any time for writing about joy in life at all. It’s amazing that you can still do it with all the shit you have to go through. Kia kaha.

  • in_this_love says:

    like so many have said, this really touched me & it is obvious you are a great mother.

    I too have autism in my family & forgive me if I missed it.. but what is your opinion on the cause of this epidemic?? It would be nice to hear from someone who is obviously level-headed, logical and informed.

    • admin says:

      I don’t really have an ‘opinion’ on it as an epidemic any more than I have an opinion on cancer as an epidemic: it’s terrible, stressful and life-shattering and I hope that one day there are better and easily accessible treatment options. I wish that there was more education about it, and more acceptance of the realities that ASD brings.

      I used to have a much more vocal opinion on vaccines, but to be honest I never really believed they caused autism in the sense that — boom you have a shot and you have it. Which imho is kind of a dumb idea. If there was a magic ingredient that automatically caused autism in otherwise perfectly healthy people, we’d be seeing it a helluva lot more (even more than the 1 in 95 figure that is quoted often). More like, if you are genetically or environmentally or whatever inclined toward it, there appears to be a definite possibility that something about vaccines may trigger that… but that’s not so much a cause as it is a little push over the edge. And who knows what that is. I think there is probably an environmental trigger (whether that be toxins, or pollution or pesticides in the water or whatever) that is more prevalent today than 500 years ago, and I hope that one day we know enough about autism to make a difference to that end (if we even can).

      All of that is simply my opinion and personal hypothesis, ftr – not to be confused with cold hard fact or even lukewarm squishy fact. πŸ˜›

  • gen_here says:

    (I promise this isn’t going to end in the “I get it” way you’ve heard a billion times by now.)

    We’re going through a really difficult (for us) stage with my 4.5 year old right now. We went through this + with her 6 year old brother… and we still have days when his horrible side comes out. She seems incapable of following simple directions given 3 seconds before her actions – like “don’t touch the sink handle – I’ll turn it off with a towel” which immediately is followed by grabbing the handle to turn it off. We continuously find more things she has written on (walls, books, my doll house, the driveway and brick house in crayon). She has completely emptied brand new tooth paste tubes, wiped her poopy butt with TP and then put it on the floor or bathroom counter, is insistent that she has to wear the long sleeve thermal shirt and corduroy overalls when it’s 95*F outside, asks for food then won’t eat it… I could go on. My husband and I are completely worn out, and I’m often in tears, by the time she’s finally really laying in bed for the night – usually 1.5-2 hours after first being sent there. And I feel like the world’s worst parent after it’s all done… especially on the day when she wakes up and asks why we don’t like her.

    I just feel defeated – especially since we feel like we barely survived her brother doing this stuff (he was much more physical – hurting her, us, himself, breaking things). By the time she’s asleep, I still have housework and paying work to do. Then I’m still up at 2 (like now), constantly nodding off, only to go down to bed to have to nurse the baby and wake up to do it all again on 4-5 hours of sleep.

    Why did I write all this out? Because I know, as exhausting and unnerving as it is to us, it’s a “season” of her life. She will eventually outgrow it… it’s semi-typical kid behavior. And I know that it’s not that way for you. I don’t have any “have you tried fish oil and a GF/CF diet?” advice that you’ve heard 3 million times before, and I won’t assume I have even a fraction of the experience of what your days are like based on what we’re going through with Mikaela. All I can do is offer my support. You’re doing the best that you can for her with all the outside help and (real) advice you seek out. You are keeping her safe and loving on her when she’s acting neuro-typical and when she’s not. You’re meeting her where she is and working to help her moderate her life to make it manageable in the future.

    She may not be able to say it, so I will: thank you. Thank you for not sugar coating life with Tempest while not making her out to be a curse. You (and Curtis) are doing an amazing job! We’re nowhere near where you live, but I wouldn’t hesitate for a second to let my kids play with yours. Those who do have no idea of what and who they are missing out on!

    • gen_here says:

      I just wanted to add – I clicked on “leave a comment” before reading any of the other comments that have been left. I really and truly did not mean any offense to the other commenters by the “disclaimer” at the beginning of the comment. I hadn’t read any other comments at that time.

      • admin says:

        Don’t worry about that, I don’t think anyone who is being sincere would think they were included in that, ‘omg I totally get it!’ variety. People that I figured you meant are generally like the anonymous noter above you.

      • delababy says:

        People who actually have a special needs kid in their family will not get offended by that statement. The feeling of “we are all in this together” is really strong. We would all like to find something with real results for the kids in our lives. What we all “get” is the defeat that comes in that search πŸ™

  • Anonymous says:

    Why don’t you just help her find the spelling book? (Or whatever thing it is each night.) The information could be important to her. It could be mildly traumatic to part with something that she has used as a reference for many months. (Perhaps she just needs more time to make a more gradual transition, rather than a harsh one.) Some kids are very picky and detail-oriented–I was one myself. Perhaps she just needs validation that her feeling is OK, which could defuse the entire panicky situation and all the escalation as you and your husband essentially tell her she is dead-wrong each night, fueling her idea that she is alone and needs to do everything by herself, and must get it exactly right if she is to get any pats on the back for her way of thinking. They must come from within, because you do not give it to her, instead enforcing your way as the only OK way. Give the poor kid some leeway. πŸ˜‰ She’s creative and picky and brilliant!

    • admin says:

      I understand that the situation may look somehow easily solvable to someone who has never raised a child with these difficulties, but you’ll just have to try and understand that if the issues could be defused with that kind of simple logic… they would be. Believe me, they would be. Your approach might work well on a neurotypical child – but not in the least on one whose brain just simply doesn’t work that way. There is a reason why we’ve spent hundreds of hours with therapists who are specialized in helping families learn coping skills, and why our approaches – as flawed as they may be, and may continue to be as we find our way through – come from years of trial and error, research, education and even *seminars* attended on the topics.

    • jenrose1 says:

      Because it’s not about the spelling book? The fact that it’s each and every night means that if it wasn’t that, it would be something else, always, and at some point you have to set boundaries as a parent about what kinds of behaviors you’re willing to cater to and which you aren’t, and sometimes even if you are willing to cater, it isn’t enough, and can never be enough.

      When a child screams at you because there’s no more sky blue paper, and then when you’ve found the sky blue paper they switch to screaming about the fact that it’s not the right PIECE of sky blue paper, but that they want the one that so-and-so over there has, you quit worrying about the paper and start looking at things disrupting the child’s coping mechanisms/impulse control/behavior filters. In a 2 year old, this is normal because that part of their brain just hasn’t wired in yet. In a seven or eight year old, it’s a Problem.

      In that particular example, I saw what was happening, saw the baffled look on the teacher’s face, turned around and walked out the door and down to the cafeteria, and asked what the hell they’d changed about what they were feeding her. And it turned out they’d switched to a bread that contained soy flour… THAT DAY, a few hours prior to the incident. Because for my kid, that’s the problem. Catering to her demand for sky blue paper would have done jack shit for the actual problem, which was an allergen.

      For a kid whose brain just doesn’t filter out stimulus or do impulse control without the help of medications, it really wouldn’t matter what the hell Babs did, it would be “wrong”, because it’s not about the spelling book, it’s about what’s going on in Tempest’s brain. And it’s something that they need to work on systematically, not symptomatically, and may involve more pharmaceuticals or biofeedback training or simply toughing it out, but judging her parenting based on a single example is just kind of shitty.

      As a teenager, my daughter tells me that sometimes the noise in her head gets to be too much, and that the only way to make it quieter is with caffeine. It doesn’t really matter what the hell happens in the outside world when the noise in your head is too damn loud.

      From a biological perspective what happens in the brain of a kid with true ADHD when they take a stimulant is that it stimulates the part of the brain that is responsible for impulse control. Which is why some of us have freakish paradoxical reactions to caffeine where we drink it, and fall asleep because it helps our brain shut itself off for the night.

      This is an issue of biochemistry and physiology, not parenting.

      • admin says:

        It’s so ridiculous to try explain to people who have never been there, that it’s not about what it appears to be about… it never, ever is. That just happened to be the trigger of the moment.

        On an aside: when people make Caption Obvious suggestions like that (see: “yoga!” or, “Have you tried losing weight?”), do you think they honestly believe that simply hasn’t occurred to you after all this time? I mean really? And that maybe there’s a reason the Answer™ isn’t that simple?

        • jenrose1 says:

          I’ve taken to telling doctors, “Yeah, about that weight loss. Find me an exercise that doesn’t make me ill, and figure out why the fuck I don’t lose weight on a 1600 calorie diet, and I’ll get right on that.”

          And when I told my PT that someone had suggested yoga for me, he looked at me, kind of horrified, and said, “The last thing you need to do is teach your joints to stretch more.”

          I said, “Yeah, I kind of figured that.”

          Of course now, the easy answer to “why don’t you exercise” is, “because standing up to make a sandwich often makes me vomit.”

          I’m a very, very intelligent woman. If there was an easy answer, I’d totally be all over that shit.

          And yes, I’m fat because I have a friggin’ hormone problem. For reals. And one no-longer-quite-so-close family friend actually dared to say, “Did you ever think your problem with exercise might be psychological?”

          I freakin’ LOVE feeling strong and in shape. But exercise terrifies me, because I work out for a couple of weeks, then end up flat on my back in bed for a couple of weeks sick as a dog, and end up below my baseline on muscle mass. Something about adrenals that are okay with ADLs, but not really okay with anything beyond that. But steroids, which let me do things like walk for exercise (to a point), make me gain weight and form life-threatening blood clots.

          I’d LOVE a simple answer. Sign me the fuck up for that shit… except it doesn’t exist, because the PROBLEM is not simple.

          • admin says:

            And this is why my mom is on the waitlist for gastric bypass even though she is nowhere near the weight that most of the other people in the support group are.
            Weight loss would help her disability and her pain level significantly, but she can’t lose weight for a million reasons, and can’t exercise. People pop in to say things like, “Have you tried such and such diet?” as though she doesn’t already have a nutritionist and hasn’t been seeing her for 2.5 years. Or, “have you tried such and such exercise?” as though she hasn’t been in PT for just as long. Really people… IF THE ANSWER WAS THAT SIMPLE, THERE WOULDN’T BE A PROBLEM. Good fuck people are stupid.

            Anyway, yeah: doing yoga and eating celery. I’m on that. It’ll cure my spinal fusions, I hear.

          • Anonymous says:

            From billiebutton

            (*side note, I hate that I seem to be only able to post in anon so just stick my nick name in the subject so you know who I am)

            I totally hear you on this one. If I had a dollar for every time someone has said to me, “maybe you just need to push yourself.” I would be a rich woman. They often relate it to when they’re struggling and feeling exhausted and I think, yeah that’s right, cause being a bit run down is totally the same as having CFS/ME. If “pushing” ourselves was all it took, I’m pretty sure everyone with CFS/ME would be cured by now! When I try to relate to them what happened last time I pushed myself because I was in denial, the way I left my body with such little resources that when I did catch something (because I was so depleted I was going to catch something at some point) I managed to get tonsillitis, then two lots of gastro in less than 4 weeks which left me in hospital at 38kg on a drip for 5 days straight and separated from my not even 1 year old for 7 days. With that in mind I might just try it again, you know, cause it was so fun the first time around.

            After that conversation they usually look at my tiny underweight self and suggest that I eat a bit more (cause I can hear them in side thinking that I must be anorexic) and some aren’t even discrete about it and just ask outright “so are you going to admit you’re anorexic?” as though that is a fair question to answer… Not even “are you anorexic” it’s “are you going to admit you’re anorexic” like they’ve already decided the answer and I just need to confirm it for them. If not that they usually suggest I have another baby cause my health was at it’s best when I was pregnant with my son, as though that is wise considering how shitty my health has been and that I’m still recovering over a year after the hospital stay. As it was I did get pregnant, slightly unintentionally, and surprise surprise I don’t feel spectacularly well I actually feel spectacularly shit. Well, it’s a surprise to all of them anyway.

            When I first got sick as a teenager I got lots of “oh yes, I get really tired all the time too” ( cause being tired compares to the exhaustion and other pain, discomfort, and issues that come with CFS/ME) or from my peers “you’re so lucky you get to stay home all the time” (u hu, the isolation and loneliness is doing wonders for my overall mental health). *sigh* I could go on for hours about how people JUST. DON’T. GET. IT. and I know it applies to everyone who is experiencing something slightly different to what people are used to. With others I usually just try to acknowledge that I don’t get it because I haven’t been there but am willing to listen. Most people though, haven’t had the experience to even realise that they don’t get it. They actually think they do. I think it’s a bit like the bucket theory http://www.insightbooks.com/Default.aspx?tabid=83&mid=419&newsid419=6& (which is about grief) but for people with an illness or disability. Maybe we should write one of those.

            • jenrose1 says:

              Re: From billiebutton

              I’ve pushed myself. The piper has to be paid eventually, the harder I push, the higher the price, sometimes as high as days in the hospital. Just not worth it. At least I think my family finally gets that when I can, I do, and berating me because I *can’t* is just pointless.

        • Anonymous says:

          I’ve only been reading your blog for about four months now, but even so I feel you are one of the most educated and information-seeking people I’ve ever encountered. Anyone who reads you would know that since you’ve moved on to the more complicated solution attempts, you’ve clearly tried the simple ones. While I suppose it is statistically possible that someone might offer you the Magic Answer, there is absolutely no reason to ever “offer a suggestion” in the critical and condescending tone that anonymous commenter used. I will never understand why people think others aren’t trying to improve a desperate situation. I have a debilitating musculo-skeletal condition and I’ve just been diagnosed with CFS/ME. Because I needed another invisible disability. What a fun collection, what should I get next! πŸ˜›

          So while I don’t know what it’s like to have your situation, I do understand what it’s like to have to micromanage treatment. How one tiny change can wreak havoc on every aspect of your life. How even the thing that worked perfectly for so long can suddenly fail and leave you grasping for a new solution. And then for your child to be in that situation, and they don’t even understand why they’re in this hell… You’re not a bad mom, no matter what you’re feeling. You’re just a real mom. “Perfect moms” with “perfect children” are only made of plastic πŸ™‚

      • Anonymous says:

        I can understand all that, but I would appreciate it if then maybe you can also understand that for those of us who have been reading for awhile, with Tempest’s behavioral issues only recently being mentioned now, at first it comes across as glaringly alarming lack of compassionate parenting. I’m not trying to sound harsh, but the kind of talk that is being said about these children in the post and in the comments just sounds really unfeeling. I am used to the touchy-feely natural parenting circles. I am not as familiar with this issue or the approach. I feel that the answers to my comment were rude as well, since I do not raise a child like this. It might be a “shitty” reply, but as Babs said herself directly below, it’s hard to explain…BECAUSE its’ also hard to understand, try as we might, without a little more info given, from the outside. It might be a good idea to lead with a big header that explains that issue or that it will be talked about at the beginning, for those reading who are not used to this disease or the approach. Just to hear everyone bitch about their kids is like”What the fuck?!” and takes a moment to get used to, when I’m used to reading about homebirth and pretty clouds and teaching your kids about the world and all that. Just walked into a topic I didn’t realize I was walking into. Give me that credit as well, if you will, if I’m supposed to understand why you blame a child for “violence” and be so angry at them. I have not had the years to understand the background and context as you all have as raise your child with neurological difficulties. Obviously, you learned gradually, and it became obvious. You said it yourselves. Outsiders cannot readily understand what is going on and what is being written about. In my LLL-parenting world, children lashing out is handled completely differently. I am not very familiar with this world. That is all.

        • admin says:

          Okay, so… I get that idealistic vision of child-rearing because I was like that once too. Hardcore like that. After I read Katie Allison Granju’s book when I was pregnant it was like MY LIFE WAS TOTALLY CHANGED and I wanted to read passages out to random strangers. I couldn’t imagine ever yelling at my kid, or being angry, or anything but 100% lovey dovey perfectness. I judged other parents for yelling in public. I thought medicating your kid was horrible and that ADHD didn’t exist. Seriously… I was that kind o person, and to be honest it makes me cringe. The kind of pain I inflicted on others with my ignorance is insane, an I understand that now. I inflicted the same pain by being ignorant of white privilege and passing racism as well. Fortunately, I learned a lot in the last few years… and continue to learn every day, so maybe I’ll fuck up less and have more compassion as time goes on.

          The thing is, thinking that way is totally cool for yourself, but it gets problematic when you put those expectations on strangers whose situations you are unaware of and don’t take the time to learn. Even worse when someone is actively TELLING you that their situation is not the same, and you choose to ignore that (like you’ve done in this entry, where I’ve clearly said I’m raising a child who has severe challenges and you’ve told me that I have to excuse your very eyebrow-raising ideas about how I ‘should be’ handling her because you have no idea what it’s like).
          One day you have two year olds, and three year olds, and four year olds, and you may have neurological difficulties to deal with, or behavioral problems, or isolation, or death or a lot of other life changes and you learn that life isn’t always like that and you have to cope with how that changes the way you parent and the way you think about your parenting. I identify as an attachment and natural parent, which is part of why it’s difficult to put in boundaries that are stricter than I ever thought I could be. It doesn’t matter that they dramatically reduce stress, anxiety and rages in children with neurological challenges. It doesn’t matter that, without those boundaries, she has nothing and the fear that builds is insane. IT doesn’t matter that it took YEARS of trial and error, a lot of heartbreak, guilt and reaching out… it’s STILL hard to do. Let alone to talk about.

          I get that you may not have experienced those things (and hopefully, you never experience them and continue to have an idyllic parenting life), but that is not an excuse for lack of compassion and empathy toward those who have. Particularly as someone who identifies as an attachment or LLL-style of parent; tolerance and acceptance are the priorities of those styles of parenting. Comfort, love and understanding… even when things are challenging or difficult.

          I don’t need to add a disclaimer for every random person who comes in with an idyllic vision of what children and parenting “should be” because it isn’t my job to educate the masses every time I feel like venting about how hard this can get. It’s the masses job to be compassionate and give those who may not be typical (or in whatever way, “like them”) a little more leeway. That’s what being aware of privilege is. That’s what being aware of luck is. And that’s just… being a good person.

        • jenrose1 says:

          “glaringly alarming lack of compassionate parenting.”

          You can seriously tell me that you’ve read this journal for a while and you could think that about Babs? I shouldn’t really be surprised, as it’s clear you’re not really paying attention to the actual content of what she’s writing, and are instead picking out the parts that conflict with your world view and jumping on them.

          Word of advice… when you come into something unexpected in a blog like this, and you feel like offering advice or criticism… first read the post three times, go away from the computer, think about it, read the post again, read all the comments, and then really ponder what you have to say before you put your foot in your mouth.

          ” I’m used to reading about homebirth and pretty clouds and teaching your kids about the world and all that.”

          And this is reality. Real life. Where a lot of us start out where you’re at and get slapped in the face with the fact that you can have a homebirth and have it be brutally painful. That you can hold your baby every minute for months of their life and end up with a child who is violent whenever you are close enough to hit. That you can go through hell to breastfeed and end up with a kid who bites you every chance they get. Not out of malice, not because you’re a violent parent, but because their wonky neurology makes them lash out, clamp down and there’s not a damn thing anyone can do to help, no matter how many herbalists or medical doctors or therapists you see.

          When your eyes are busy being opened, it’s probably better if your mouth isn’t.

          Do I blame my child for the violence she inflicts? No. I don’t blame myself either. She’s missing a fundamental piece of her chromosomes, and the rest is out of balance, and no matter what I do, it’s never quite enough to make it better. But as a parent, it’s still devastating and hard and upsetting to have someone you love hit you or try to hit you, daily. If she was anyone but my child, I would have recourse. They would be in jail. I could walk away. But as a parent, I cannot.

          “I am used to the touchy-feely natural parenting circles. I am not as familiar with this issue or the approach.”

          I quit frequenting a lot of touchy-feely parenting circles around the time someone told me that signing with my hard-of-hearing child was poor parenting and indicated that I simply wasn’t “in tune” with her enough to understand her. At age 6, signing is still her strongest form of language because she flat out lacks the ability to make half the consonant sounds.

          Natural parenting has a lot to offer, but it also fails parents profoundly when their kids don’t respond in the picture-perfect Waldorf way. If I tried to parent my special needs child by most of the “natural parenting” methods I’ve looked at, I’d be black and blue, and/or she’d still be belly crawling. I’ve taken what works for me, what works for her, and we’ve found a way that gets us through each day reasonably intact. And ironically, going to public school and being in a highly structured environment there with teachers has been better for her than anything we’ve done at home.

          No one is saying that your methods are wrong for your kids… but we’d be lying if we said it was all daisies and sunshine with ours. And I know that Babs and I both started out from a natural parenting perspective. We’ve both cloth diapered, breastfed, worn our babies, paid attention to diet, etc. etc. etc. And those things aren’t bad, but they’re not everything, and sometimes our kids need pharmaceuticals, and sometimes we have to put them in another room so that they can’t hurt themselves or us, and sometimes it’s so brutally hard that we can’t smile about it.

          “Outsiders cannot readily understand what is going on and what is being written about. In my LLL-parenting world, children lashing out is handled completely differently. I am not very familiar with this world. That is all.”

          When you find yourself in a world that is unfamiliar to you, I suggest you pretend that you are an anthropologist, watch, and learn the customs before offering advice and criticism. As it is, you come across as an ugly tourist, talking louder and slower so the stupid natives will understand. Maybe if you slow down and listen, then we might make sense to you.

    • Anonymous says:

      While I dont have a child on the spectrum – It’s my understanding that even if they HAD given her the book back – she would have moved on to another aggravation. She was wound and it wasn’t about the book – its just that when they are wound like that they lose it – if not the book then something else.
      Am I right, Heather?

      Shelley

      • admin says:

        Yep, exactly.

        We actually had the spelling of that child’s name on a shelf next to us at the time, as she was in a prior class. Doesn’t help. She’s already onto the next thing.

    • chem_nerd says:

      Because it isn’t really about the book. The book is merely a physical symbol of a far more complicated emotion – feeling inadequate and out of control of the situation. Producing the book won’t make that feeling go away, and when it doesn’t go away, it will intensify and attach itself to goodness knows what else.

  • admin says:

    Damn. I’m sorry, mama… that’s… awful. πŸ™ And I don’t mean awful for him, as obviously it’s what he needed to be stable and happy… but awful for you, because I both can and can’t imagine it coming to a point where that would be the reasonable and most healthy step to take. I was once put in a home too. I don’t resent my mom for that, because I know it was that bad and it was the only thing she could do.
    At the time I did… I did for a long time, for a lot of things that weren’t her fault at all (severe institutional abuse; things that don’t happen anymore due to a lot of changes in the way we approach mental health care for children). Knowing what I do now, I can’t think of how hard that was for her… sometimes I think about what I would do if it came to that for me and I don’t know if I could make myself do it, even if it was the best, I don’t know if I could get beyond my own selfishness, and my own terror; even at our expense. I have nothing but respect for you.

  • tmuses says:

    behavioral problems

    Sorry if this is a repost. Accidentally forgot to sign in and I couldn’t find it in here.

    My daughter is 13. Since she was pretty young, maybe by 8 or earlier, she became noticeably more defiant. As a baby, she was stubborn. She got more shy as she became a toddler, but we were sort of withdrawn so that made sense. She did talk to people but she didn’t go out of her way. She did talk to children. In her first year of school, she would try to play with kids and they didn’t seem to want to play with her. I wondered why. She was nice and not bossy. I think they could see, not knowingly, that she was not confident, but I only feel that now or I would have taken her to fun classes when she was younger. My husband got really depressed when she was 3. It didn’t help. He got better but their relationship has been strained since. They still did things together but they weren’t really close, just sort of. He didn’t put tons of effort in, only when he wanted to. I know that he regrets that. Eventually, she stopped calling him dad. Now, she doesn’t answer him when he asks her questions ans shows interest. She ignores me too, but I make her answer me. It’s easier for me because she is around me way more. I didn’t work when she was young so I was home all the time. Today, I am home after school. It’s normal for her to talk to me. Our relationship is just different than theirs. As far as friends, she tries. But she got tired of being ignored and kids are mean little dicks. It has rubbed off on her in the last couple of years. She has learned how to smart off back to them. Now, she gets offended at EVERYTHING. She still wants friends and has a good time with them when she has them. She gets so excited when she has a new one. Usually, she ends up irritating them somehow. I think by being too silly in her desperation to keep the friend.

    At home, she picks fights with us all the time. She has chosen to be vegetarian and nearly vegan. This is not a bad thing, and possibly, if done right, a good thing. But I truly believe that she is doing it, maybe unknowingly, to test us, push us, make us upset. I think she also enjoys it when we (her parents) don’t get along. She absolutely hates it when we hug or I rub his foot, or give him a small kiss. She always tries to get me to come see her when she sees that. She also says she is gay. I think this, again maybe unintentionally, is part of her way to fight with us. I know that might seem ridiculous, but I really do think this. She also likes to play the abuse card after we have tried to ask her to not do something and she won’t listen so we tell her to go to her room, and she won’t listen. We give her many chances to go and tell her that we will have to take her to her room and it won’t be pretty so she should just go now. She won’t. So we physically move her. She gets this stubborn look on her face that says “Fine, I dare you to move me”. She fights as we come near her, and when we end up grabbing her very firmly, because she is strong and fighting, we are abusive in her eyes. She gets to her room and we shut the door. She will open it and stand there, acting like “I’m in my room. What?”, with a smug look on her face. She can never give in. She tests us like this all the time.

    Continued in a reply to this comment.

    • tmuses says:

      Re: behavioral problems

      We’ve looked into it and believe she might “have” Oppositional Defiant Disorder. Made up? Who knows. They have to give it a name at some point. It isn’t just badly behaving kids. Google it. It is her. A big part of me truly feels that she lacks confidence. I feel that if she had more, she would make friends easier and feel more balanced. She has no siblings either. We left the religion that had a few friend like people for her, though we didn’t do a lot with them but saw them in the church 2-3 times a week. We haven’t joined another religion. All she had was school and us. A couple of cousins, but since leaving the religion, they don’t spend a lot of time with her either. Some, but not a lot. And when she does, it is quietly apparent, but known to my daughter, that we, her parents, are not okay for them to talk to because we are apostates. She can feel that. Sometimes she believes that we knew what would happen when we left so we should expect that we won’t be invited to have dinner and such. this hurts for my daughter to feel that way. Anyway, we signed her up for a writing camp this summer. Two weeks, just during the day. We didn’t give her a choice because she would just fight it. We told her the day before she was to go because she would have had too much time to convince herself that it would be so horrible. We know our child. Other people seem to think we should have given her more notice or a choice. We know that would not have worked. As it turns out, she met some new people, she had a good time after the first two days, and will go back if any of the other girls do. Now she is even willing to move to a new city where these girls live, where before she absolutely thought it was the worst thing ever, even though she gets treated badly at her school and her school is poor educationally and offers nothing to her.

      I can’t guarantee that she will be happy at a new school in a new town. But one of the girls is vegetarian (when her parents don’t cook something delicious like steak) and one of the girls went to the gay pride parade/event. Even if my daughter changes her mind about the food and her sexual orientation, at least I know that there are people that are a little more accepting.

      Anyway, this was long. Basically I wanted to say that sometimes I hate my child. It makes me feel terrible. It is partially my fault. I really should have gotten her more involved in interacting with people/ children. I was in a religion that didn’t allow organized sports, didn’t allow association with people out of the religion accept at school and that was limited, and didn’t allow college even though people did it a little. Finish high school, that’s it. It isn’t the religion’s fault entirely. I was in it, but they are basically a cult. It’s hard to get out of that and I am so thankful that we did. Even had we not been in it, we were still quiet and not overly motivated people, especially me. She still would be shy and somewhat lacking confidence.

      I feel for you. It’s a hard life and I never want to have another child. If I do get pregnant, I would keep it and hope that our new outlook on life and what we have learned about parenting our daughter would help. But right now I am 33. My daughter will be out of high school when I am 38. That is young and if I have to kick her out of my house if she is as disruptive as she is now or worse, I will. I will move to Florida with all the 70 year olds if it means peace. Then again, she wants to move to Canada because of the gay marriage politics. I love her terribly, but I cannot handle how she manipulates every situation into a fight.

    • jenrose1 says:

      Re: behavioral problems

      Why would her being gay or vegan be a symptom of defiance?

      When my daughter came to me and said she didn’t think she was straight but she didn’t know what she was, all I did was give her a hug and my unconditional support.

      • admin says:

        Re: behavioral problems

        I think she may have been speaking about within the religion/cult, and/or that her daughter may inherit traits from the people she’s around as a way of trying to find or create an identity?… I know many kids with neurological problems, particularly social ones, tend to do that.

        • tmuses says:

          Re: behavioral problems

          Thank you for responding. Yes, since around around the summer before she entered the 5th grade she has felt the need to relate to something. For 5th grade it was being “emo” (not the original emo, but the one that turned into an emo/hot topic/sort of goth look. She got into the band Tegan & Sara. Good band. Rock, late 20s, twin sisters, lesbians- these are all part of their identity that I think are directly related to who they are as a band. She started dressing as emo as she could being a small, even for the 5th grade, child. Skinny jeans, darker shirts, no flowers or sparkles. She also would dress kind of boy like, which I was always okay with. As a baby, she had a good amount of boy clothes and I despised pink and poofy, mostly. She never got overly girly clothing so when she started requesting very boyish clothing it wasn’t too weird. But it was her insistence on calling herself emo that didn’t sit well with me. I could tell that she was latching onto an identity instead of just being herself.

          Sixth grade saw her trying more to fit in. This meant shopping at all of the “normal” stores. Expensive, popular clothing that everyone else wore. This also didn’t feel like her. Not entirely, anyway. But again, it wasn’t exactly the clothes as it was that she was trying to fit in. At least she was doing it to try to fit in so that she could make friends, which I hoped for, but I also knew that if it wasn’t really her, then how would she really fit it. Besides, we live in a terrible town and we don’t get to pick the school she goes to. it’s trashy and I’m pretty sure that most of these kids are doomed to a life of smoking, cussing at their own kids, no college, and never doing anything to learn outside of school. They’re stuck, really. Anyhow, since she didn’t feel comfortable with herself, at least I assume that’s why, she still didn’t really have friends.

          7th grade she was still dressing “normal”. She likes the clothes but she feels desperate to have what the other kids have. Like it isn’t for her, but for their approval, which never matters because they still don’t invite her to their parties and still are mean to her. She has acted out at home for years, but only in this grade do I see her acting out towards the kids. By acting out I mean saying mean things. Keep in mind, these kids are mean and she has taken it for years, but I have tried to instill in her that we should be peaceful even to our enemies. I understand that this is very hard for her to do, however. It isn’t just about defending herself either. She starts getting offended for things that aren’t even directed at her. Anything that could be remotely irritating will make her mad at them. She never gets violent, just really pissed and she hates everyone,but not in a demented way.

          • tmuses says:

            Re: behavioral problems

            About November, she tells me she is bi. We had a good conversation. She felt mostly comfortable, even though it was hard for her to tell me. She had just been to her aunt’s house who she told first, who is bi also and lives with her partner of like 10 years. The days that followed were not so good. She seemed to constantly try to challenge me about it. Now, here’s where I will say something that will make people mad, but I’m not going to pretend that I don’t feel this way. I don’t agree with the lifestyle of being gay. I know it isn’t a choice. I know gay people are great people like anyone else. I hope that my credit be taken away because I feel this way. I try and feel successful in loving people, no matter their sexual orientation or their political views, or their religion/non-religion, what have you because where are all humans. But I don’t have to agree with everything. So, what started as me trying to make her feel loved and comfortable, turned into her constantly pushing me into fights about how I feel about gay things and people. I promise that I am not trying to put my daughter in a bad light. This is just what she does. It started years ago with music, her dad, food, things she wanted me to get her, how he room is, things she felt she was entitled to, just whatever she wanted to fight with us about.

            The thing with her is that when she does something she will get stuck on it. Always has. As a child she had the typical thing she had to carry with her. When we, as parents, let them so this, the get attached to it in an unhealthy way. We break them quickly and it’s better, usually. I didn’t ever do this. I think she partly has an addictive personality. She would carry tissue with her everywhere. She would get frantic if she didn’t have one on her hand, all crumpled up so she could squish it up to her nose all the time. She had a cold, which is what started it. It quickly turned into a phobia/addiction when the cold was long gone. Months of this. She did it for a while with tissue in the pants too. She would pee on the toilet and later she’d feel her underwear had a little wet in them. She started using tissue in her underwear to control it. Again, months later she still did it even though she didn’t need it.

            As she got older, she was able to look every symptom up on the internet. She gets sick, she looks it up and thinks she has cancer. She DOES have to identify with things. She is trying so hard to be something with a name. She struggles with trying to fit in and, at the same time, trying to rebel and be different. I think she is so used to being different, first with out religion because no on ever understood it, and being cast out because of the differences, that she never fits in. So she chooses something, subconsciously, that will make her stand out to both rebel and relate at the same time.

            • tmuses says:

              Re: behavioral problems

              I know it seems very politically incorrect to say that I don’t know if she really is gay (she started with bi but it quickly changed), but it doesn’t feel like her to me. But we all know that kids have a hard time fitting in and go through styles and phases. I don’t think it’s so weird that kids can do the same thing with their sexual feelings. They do it with so many things. I saw something she wrote once. It said the reason she felt she was gay was because she liked the way the gay community acts, as in this idea that all gay people are sunshine and rainbows and peaceful and accepting. Now, this isn’t actually realistic, just idealistic. The outside view seems that way, just like the view that we, today, have of hippies back in the late 60s. Not realistic. It was the idea of what they seemed like. The gay community is usually more accepting because they are used to being mistreated. But she has this idea that they’re this tight knit community that has only love for everyone. Point is, she likes that they seem loving and accepting and she wanted to fit it. To fit in means she would be like them. She could be accepted into this community, especially if she is gay. The gay community won’t second guess her, they will just be nice to her. She would have instant approval and friends, whereas at school, wearing the clothes and listening to the music didn’t make the kids instantly like her like she thought it would.

              The vegan thing is much the same. I think that when she became vegetarian, which started slow, that as time went on, she could tell that many vegetarians were gay. So she already identified with vegetarian, then sort of vegan. It all kind of went together.

              She really wants to fit in and be comfortable. The gay community is a great place for that. But I don’t feel that she really fits in because it doesn’t seem like her. It feels like a cover. She liked boys so much. I know that’s normal and kids do just mimic adults with that. Puberty changes things, although she went through that by 11 and still really liked boys a lot. She told me she knew she liked girls because she thought they were pretty. She would see them dressed up and think they looked good. Me too! I loved women when I was a kid. Way more than men! I always saw women as beautiful and attractive and would attach myself to them. I am not gay. This is totally normal for a little girl to feel this way. Earlier I said she liked to look for symptoms and put a name of a disease to them. This is the same thing. “I liked women and thought they were beautiful and didn’t feel that way about men so it must mean something”. All it means is that you identify with females because you are a female, and women are more beautiful because they are gentler, and tv makes them dress up and wear makeup that tells us to believe they are “pretty”. I think all girls feel this exact way. But my daughter has always tried to attach a name to whatever she feels, because for her it can’t just be normal, it always has to have a name.

              So, to the person that asked about the vegan/gay part, and to you. This is what I think and it may not be correct or accepted, but it is how I feel. I’ve watched her grow and see things about her that make me feel this way. I’ve seen her personality. She gets stuck in situations. As a little child it was easier to take something away that was unhealthy for her. I think that, for her personally, she isn’t gay but is attaching herself to an identity. If it were real for her, that would be different. Being vegan won’t hurt her, but if she is not really gay and she is attaching herself to it, it is just as unhealthy and detrimental to her as it is for women that think they are straight because they are trying to fit in, and when they are 30 they realize they are gay. Only after sleeping with numerous men, maybe getting married or in abusive relationships, and messing up their lives, they are unhappy and get into drugs. All kinds of stuff. It isn’t real for them. And it hurts them so much. I don’t want this to hurt her. I worry that it will because she is stubborn and will get stuck because to stop believing it would mean that she was wrong. She can never be wrong or she fails, in her mind.

              Thank you.

              • nprincess_m says:

                Re: behavioral problems

                I so don’t want to come in and sound like “one of those” people. But I work in behavioral health (inpatient) with children on the spectrum, children with ODD, etc. etc. She sounds angry and it sounds like she spends a lot of time being angry. This may be a very stupid question, but does she go to individual or family counseling? Sorry if I missed that part in your comment.

                • tmuses says:

                  Re: behavioral problems

                  Hey, no problem. I hate it when people immediately jump to ODD, ADD, ADHD, autism. And then the first solution from everyone, including doctors, is drugs. Eff that. To answer your question, no she doesn’t and we don’t. We had briefly thought of sending her to counseling. First, we sent her to summer writing camp, because she likes writing and needed to see life from outside of our terrible town. I think it was a really good thing. Ultimately, I think she needs to feel comfortable with herself and get confidence. Then friends will be easier to come by. I’m not ruling out counseling, but I’d be lying if I said it was something I like the idea of. I’d rather try things here. Only after reading about ODD are we learning how to handle her negativity. And, like I said, trying to help her be confident. I think it actually IS helping. If it doesn’t, we will look further into it. I’m hesitant.

                  • nprincess_m says:

                    Re: behavioral problems

                    I can totally understand. I think for some people mental health and counseling still carries a “stigma.” And it sounds to me like you’re trying really hard to understand her and to see things from her side and to figure things out. At her age and with how angry she seems (total outsider’s perspective and I’ve NEVER met her, just from the info I read) it may be helpful for her and all of you for her to have that unbiased, neutral party. The hope is that some healing can occur now so that it doesn’t continue to infect your family and lead to lifelong issues.

                    I know we don’t know each other, I’m just reaching out human to human, mom to mom. It’s hard to know what the right choice is and it’s hard to then DO what that “right” choice is, whatever it is. Thanks for not taking offense. If you’re ever interested in any de-escalation techniques (again, you may already know of some that you’re implementing) feel free to message me.

  • This brought me to tears, because I honestly thought I was the only one going through this…

  • mammaopal says:

    All you Mama’s need to pick up a copy of this book, The Elephant in the Playroom. http://www.amazon.com/Elephant-Playroom-Intimately-Extraordinary-Heartbreaking/dp/1594630356
    No life altering ideas, methods or “cures”, just stories of what other families are going through and the heartbreak that can come with raising kids with special needs.

    Heather, I understand this so well.
    Linden has an entire room in our house with walls that have been reinforced with one inch plywood, has the window barricaded and plexiglass over the lights and nothing else but carpet, foamies and a sumo chair. It’s called his “angry room” and he goes there for his meltdowns. We had to do it because he was putting holes the size of car doors in the walls in our home. He still does if we’re not fast enough to redirect him to his safe room.
    He can’t be in school with the other kids at all, which is so frustrating and makes me cry all the time at the unfairness of it all.

    I also totally understand the hard decisions that have to be made regarding medication. Medicating our son goes against every fibre of my being. It comes down to quality of life. Honestly, with our experience, reading about Tempests evenings and the struggles you’re going through with her, my first thought was “sounds like this warrants an evening sedative”. It’s hard with sedatives, because that’s the one kind of drug that scares the shit out of everyone. It’s not one that’s ever been offered to us, but we don’t have the evenings you have.

    Anyways. I’m not trying to give advice, just saying that I understand how hard it can be. Especially the lonliness.

    When I was postpartum, I felt rage inside of me towards Linden’s meltdowns when they happened in the same room as his baby sister. I still get mad, but we have an exit strategy now, where as soon as Linden appears to have been triggered, one of us leaves the room with the baby while the other one deals with Linden. I just feel furious that she’s going to grow up witnessing these intense emotional blowouts. The screaming, the damage to property. It’s really scary. I worry about the effect on her, and it makes me mad. I’m sure you’ve been feeling that way for years now with Xan. I just remember the hormones making it so much harder to deal with it.

    Love.

    • admin says:

      Thank you.
      Sometimes I worry about the effect on Xan, because he is very sensitive and sometimes she gets him to do really inappropriate or dangerous things… only ever in the evenings. During the day when her medication works and her impulse control is better? She’s really good with him. I mean, they still fight like cats and dogs but she’s not convincing him to shit in corners of the room (to be fair, that hasn’t happened in six months… but it was a legitimate problem for a while).

      She’s never purposefully violent toward anyone other than Xan, and the times toward Xan are relatively mild and within the realm of normal sibling stuff (like a swat or a slap; nothing I would consider very serious or autism-specific, but definitely still stuff we interfere for) but when she tantrums she can be unintentionally violent just by the nature of her flailing and swinging and throwing herself around. And when she’s like that she’s freakishly strong. A rage room is an idea my mother employed with me as a child and it worked really well, though the execution was different, but I’m not sure Tempest would take to it. She has such a hard time expressing herself, especially in a tantrum, and even with permission she won’t do that kind of stuff. :-/ I’ve tried a number of times. It seems like really the only solution is to send her in her room until she screams it out… it’s not even like we have to lock the door or anything, she’ll just stay in there and flip out all on her own. It’s just a matter of getting her there. She sees her room as ‘her space’, particularly when she’s upset.

      This is rambly, I’m sorry. Anyway, the point is thank you for sharing your experiences.

      • jenrose1 says:

        The freakish strong flailing may ultimately have Shiny living somewhere other than with us, once she’s too big to contain. Seriously, she’s only six and she’s caused so much damage already.

        It’s not even the tantrum flails that slay me, it’s the ones where she gets super happy and then *BOOM* hauls off and hits us. On purpose.

  • Anonymous says:

    Re: billiebutton

    My partner isn’t diagnosed either. We started the process but he decided he wasn’t comfortable with it. There is a pretty huge waiting list here too. I also didn’t push it because the woman I spoke to on the phone was so abrupt, that every time I spoke to her (because I had to do it all on his behalf) she made me cry and it takes a lot to make me cry. At the moment he’s been able to meld his life in such a way that it isn’t too much of a problem and is able to function relatively normally.

    I know what you mean about needing to live with him and even then sometimes people son’t see it. My partners parents just thought he was difficult and weird. He wouldn’t be involved in family things, would have screaming rows with his parents or else not speak to anyone at all. He didn’t play as a child, not like “normal” kids, his mum told me. He would watch chitty chitty bang bang over and over all day long if his mum let him, which most of the time she did. He now has no recollection of this and doesn’t even know how the movie goes. By the time he was at high school he was smoking, drinking and taking drugs which I’m pretty sure was self medicating. His parents of course knew about none of this because he was so reserved and secretive, no one really knew anything about him…they were also in major denial.

    It wasn’t until he left home and moved in with myself and my parents that anyone questioned it. It was my mum who was a learning support teacher at the time, who first pointed it out. She and I noticed the way he does little twirls on the spot for no reason, his little habits, the way he won’t touch certain fabrics and says that just thinking of them make him cringe, the way he very rarely showed emotion, would often misunderstand people or not realise about things like implied language etc. He used to have a hat that he would wear all the time when he was out and suffer major anxiety if made to take it off. He now has gown out of the hat but has lots of issues with his hair. He doesn’t like to be in crowded places and I have seen him go from normal, rational adult to frightened, overwhelmed toddler, in a matter of seconds because something really unpredictable happens. A few weeks ago he was willing to turn around after driving an hour to the city to meet a big client (he owns his own web design business and rarely meets with people face to face) because the traffic was bad, there were too many people and we were running a few minutes late. He doesn’t have friends. I know that sometimes he is lonely and misses the friends he had as a kid (he moved here from the UK with his family at 16) who just accepted him for who he was because they’d known him since he was a baby, but most of the time he is happy just being on his own, with me and our son. When we do go out he rarely talks to anyone because he doesn’t really care enough to talk to someone unless it’s something that interests him. He doesn’t see the point.

    I know that compared to many people his issues are minor and don’t really get in the way of our daily lives. I think the spectrum thing in this case is hard. I have CFS/ME and find the same thing. I know people with CFS/ME who can’t get out of bed to pee and others who can still manage part time work, then there are people like me, who fluctuate between bed ridden and about 70-80% of normal functioning. With things that vary so much it’s hard for some people to really get how bad it can be because if you’ve only met someone high functioning you assume that’s what it’s like for everyone when it really really isn’t. In a world where it can be challenging for people with really severe cases to get diagnosed, it can be near impossible for high functioning people who often spend their lives being told they’re bad, weird, lazy, difficult etc when really there is a reasonable explanation for the way they are and none of it is intentional.

    • Anonymous says:

      Re: billiebutton

      That last bit wasn’t clear. I meant to separate the whole, people making assumptions on how easy/difficult something is based on minimal experience, and the diagnosis thing. The assumptions thing can be so hard and I imagine made harder when people who know people like my partner, assume all people on the spectrum are that easy to live with and just don’t really get it.

      The other thing was separate and more me wanting to acknowledge to those that love and live with people on the high functioning end of the spectrum, that it still isn’t all butterflies and sunshine and that the difficulty in being diagnosed can sometimes be one of the hardest battles because with no diagnosis or label, people in general can make so many assumptions about someone who is a bit “different” but not obviously different enough to feel sympathetic or caring towards….I mean that counts in loads of ways though. Things like autism, psychosis, CFS/ME are all totally unrelated conditions but are all “invisible” so people just assume there isn’t anything wrong and that the person is just difficult or for younger children or teenagers, that they just have shit parents. Which makes everything else just that little bit harder. Anyway I’m rambling. I just wanted to add that cause I realised it didn’t make sense.

      • admin says:

        Re: billiebutton

        Don’t worry, it does make sense. πŸ™‚

        And yes, the assumptions/invisibility thing is definitely one of the most difficult aspects. In public she acts just ‘off’ enough to attract attention but not ‘off’ enough for people to understand why. So it’s an immediate host of random judgments: we must be awful parents, we must spoil her, we must not control her, we must give in too often.
        If someone sees us take control of a situation with her where we have to put limitations and boundaries on things to prevent anxiety and OCD attacks, it’s a whole different set: they’re making a mountain out of a molehill, why are they so needlessly strict, that poor child is deprived, what does it matter if she has xyz?… people who have absolutely no idea that it really, really doesn’t matter what the trigger is about because once it’s started that part is insignificant. It’s about preventing the triggers as much as you possibly can, and dealing with the breakdown.

        It’s not like she has a temper tantrum over a cookie in a store, and we won’t give it to her because we’re in some sort of power struggle. The people around would be going, “Just give it to her, what does it matter? Geez…” like that will actually make the situation better. But the thing is, the cookie doesn’t matter: it wasn’t the point. It was just the trigger. It took us years to figure that shit out. Maybe if she was neurotypical, giving in to the tantrum would actually make it go away, but that’s just not the way an ASD brain works. That’s not the way an ASD tantrum works. It’s a whole other set of rules for a whole other game. If we give her the cookie it suddenly wouldn’t be the right shape, or size, or flavour, or it was two rows to the left and underneath another one, or we didn’t do it fast enough, or we touched it… and none of THAT truly matters either. Once she’s triggered, everything becomes a trigger. It’s now a battle to try and defuse the situation by removal of ANYTHING and EVERYTHING that could potentially become yet another trigger, and simultaneously help to rationalize and remove the original one so she doesn’t become obsessed with it (which leads to a psychological loop that can last hours upon hours).

        So when people act like we’re insane power hungry parents for actually having a rule about how many blankets she can have on the bed?… I know in an instant that they’ve never, ever had an ounce of real hands-on experience trying to help a child with neurological problems feel safe at night. It’s like fucking opposite land: more blankets = less safe. The more she wants them = the less safe she believes herself to be with them. Putting a limit on the blankets she can have = one night of tantrum, the rest of her year feeling safe with one blanket without anxiety or OCD attacks about any and all blankets, no matter what time of day, for the next 5 years. We learned that one the hard way and it took almost two years and therapy to undo.

      • jenrose1 says:

        Re: billiebutton

        My DH is on the spectrum, and while normally he’s a great spouse, he gets fixated on how things should be, and interacts with the world as if it was the way it should be rather than the way it is. Which can be a Problem.

        At age 44, he’s learned to do consciously what most people do without thinking about it, but sometimes getting to the point of appropriate behavior is grueling and heartbreaking. And if he’s tired or hungry? Oy.

        • Anonymous says:

          Re: billiebutton

          Yeah that. It fits with us a lot. There are somethings he can force himself to do because he’s old enough and rational enough to know he needs to (like in work situations) but if he’s tired, stressed, his hair isn’t sitting right, etc it’s really hard and the rational part isn’t as rational. Sometimes he will bypass family gatherings or other high stress situations completely cause his anxiety levels go through the roof. He sat in the car for a few hours at the beginning of the year when he was meant to be driving to his, soon to be BIL, bachelor party. The combination of having to be in his sisters wedding, which meant wearing the same clothes as the other groomsmen and standing in front of people, navigating to the city at night, being around drunk people and crowds and conforming to what his family wanted from him, was just TOO much on the anxiety scale. The reason he works for himself is because it is too difficult for him to work for someone that wants him to do things in a way that is clearly not as efficient or good as the way he would do it. Even now he has clients who want him to do stuff he doesn’t agree with but at least because he’s in his own home and able to vent about it privately it’s not such an issue. I think for an adult who’s on the higher functioning end of the spectrum life is as you say, pretty normal but it’s never going to be like with other people where you can say, “hey lets go to the beach today” because it might be windy, which might make his hair blow about and then the rest of the day will just be filled with reasons why we need to go home, now (or countless other similar scenarios) and I’m pretty sure that stuff like that just isn’t an issue with other people. At least I know there are others in similar situations to us and we can all be slightly out of the ordinary together πŸ˜‰

  • heavynleigh says:

    I could have written all of that, subbing Aidan for Tempest and eliminating the school stuff because we homeschool. But otherwise, yeah. The hoarding, the meltdowns, the “funny”, all of it. Having a kid with Autism is definitely not a fun ride. It has it’s moments, sure, but it’s more like an out of control roller coaster. Every now and then it’s fun, when there’s a new turn or dip in the track, but when you’re whipped upside down and plunging 1000 feet and whipped all over the place in the span of a few minutes, it’s not so fun anymore. At least not for me. I’ve never particularly cared for roller coasters though.

  • ruethee says:

    <3 I'm so sorry. Thank you again for being so raw and real.

  • I like reading articles like this because it reminds me to try and see the realities behind public situations, like meltdowns, for example My ex live-in boyfriend (we’re still friends) has a really nice little boy who is on the lower-functioning end of the spectrum. At 6, he’s just now becoming verbal, and then only when he really puts effort into it can he say a few words. He’s OCD with his movements and ferrets away little items. However, he is also visibly impaired. Most people will realize he has something going on behind the scenes because of how he moves, looks around, and verbalizes constantly. It was a half-blessing. He wasn’t held to the same, and unattainable for him, standards. Few people were disgusted with his behavior, but there was *that* fear. Seeing how other people reacted and interacted with this boy who I loved and we all struggled with made me face the fact that I wasn’t the most kind person in my reaction to other families in public. Being exposed to people living with issues you aren’t familiar with is so important because it cuts so much of that stupid judgment crap. I know this was all kind of rambly, but I just wanted to thank you for sharing.

  • Anonymous says:

    I am so sorry, this sounds horrible and exhausting.

    I am sure you get really tired of suggestions and people’s bright ideas – but I still want to throw this out there for you: Have you heard of the GAPS diet? It’s pretty intense but I have read/heard numerous success stories for autistic children. If you check out the blog Health, Home, and Happiness you can read alot about it and how dramatically it has helped this woman’s daughter. Best wishes to you and your beautiful family.

    -Jordan

    • admin says:

      Dramatic dietary changes were the first things we tried, back before medication was even an option.

      It works for barely 5% of cases, and generally those are cases were food sensitivities and gut problems have symptoms that mimic neurological disorders, which is why they respond to dietary changes (ie. removal of the trigger).

      • jenrose1 says:

        K was never diagnosed with anything, but when she was getting peanuts all the time, or accidental exposures to soy, it was truly Jekyll/Hyde. Her behavior became SO bad, nightmarish, irrational… give her a few days of clean diet and it was like magic.

        But most of my friends who are on the spectrum have food issues… and even avoiding the foods they have issues with, they’re still on the spectrum.

        • admin says:

          As a kid I was like that with peanut butter. I grew out of it though, it doesn’t bother me anymore. We did so many, many, MANY elimination diets with Tempest. Hell, she spent the first many years of her life a sugar-free vegan who ate absolutely ZERO processed foods, dyes, refined sugars or refined flours (and was GFDF for 1-2 years)… plus expensive organic vitamin and oil supplements. We slowly added foods in and checked for behavioral or mental changes. Zip.

          • jenrose1 says:

            Yeah, I can safely say that Shiny’s behavior issues have NOTHING to do with food. She doesn’t tolerate citric acid, but that’s chemical burns, not behavior, and not an allergy, and totally chromosome related. Other than that, she can eat just about anything (and does, including wood, paper, metal, lightbulbs…sigh. Okay, so her behavior issues have something to do with food, but it’s not what most people think of…lol!)

  • skyrose says:

    **hugs to all of you**

    Change “her” to “him” and I would think you are writing about one of my two boys.

    They seem to set off each other so.. umm.. well? Ethan’s Tics (Tourette Syndrome) bother Liam (PDD-NOS) and they each have opposite sensory issues — Ethan can’t feel pain and craves deep pressure. *head desk*

    Thankfully (*knock on wood*) Liam’s responding really well to his medicine (he’s on Strattera) and the GFCFSF diet. But even with that, he’s still having tantrums and making me doubt myself as a good parent.

    Ethan’s not on anything, and we have a summer of feeding clinics, OT evals, and MRIs ahead of us for him…

    Yeah, I’m with you on the damned magical special snowflake shit and the whole trip to a “different country” where you need to learn their language. If I could figure out my kids’ language/behaviors, I wouldn’t be pulling out my hair every day.

  • bondo says:

    I cried reading this. My daughter has autism or PDD, but she has the same OCD shit, same awkward or lack of social skills, etc.

    I HATE movies portraying people with Aspergers or Autism as just extremely brilliant, quirky and so funny people. Yeah, Ruby is quirky alright, he life is HARD, it’s not magical. She struggles everyday. We struggle along with her.

    Oh and yes, the people who pretend to care. I have lost all of my old, life long ‘friends’ since Ruby came along. No one can understand why she just refuses to wear pants in the house and why I just let her do this. We got tired of the fights. They aren’t just little meltdowns, they’re full blown on the floor kicking and very shrill screaming over fucking pants!!

    This is hard.

    • admin says:

      With Tempest it’s the same thing: except shirts. As soon as she comes home the shirt goes off.

      • bondo says:

        Haha, shirts just made a return for Ruby. She was full nude for about a year.

        At this point I don’t even think it’s a sensory thing with Ruby. I think in her mind she just makes rules for herself. I have no idea why, but right now it’s shirts and no pants at home. She has many rules and none make any sense! It just seems like she’s very hard on herself and way too structured. I NEED the Raffi CD to just end in the van everyday!

    • skyrose says:

      OMG the pants comment killed me! *lol* Ethan spent years (literally until he was about 4) wearing no clothing. He hated clothes.
      One night after the boys went to bed, we had a guy over looking at a mold problem in our basement. Karl and I were talking in the kitchen and we hear a kid waking up. Ethan comes walking out COMPLETELY naked.
      Why you might ask?
      He wanted to show the “nice man” his penis.

      When my older son, Liam, was getting ready for his TSS to start, I told his BSC that they had to warn the TSS that Ethan will be naked. If the TSS couldn’t deal with Liam’s little brother running into the room naked or stripping in front of her, then she needed to find a different case πŸ˜‰ I refuse to deal with the tantrums. It’s not worth it for when we’re home.
      Now they overly praise him when he stays dressed for a session (Liam’s former TSS is now Ethan’s TSS). Of course now he’ll stay in the same outfit for DAYS. I’ll peel him out of clothing while he’s asleep and sit different clothes out for him for morning.

      I’ll leave him in the same clothes until they are ready to walk to the laundry under their own power… I don’t care. For a while it was PJs. I was so happy that he wasn’t running outside nude, that I went and bought him 10 pairs of the PJs he loved. It was worth eliminating the screaming tantrums to buy him a ton of “special” PJs.

      • jenrose1 says:

        Nude wasn’t an option for us because Shiny isn’t potty trained and will shred her diapers if she doesn’t have clothes on. We first resorted to cutting the feet off pajamas and putting them on backwards, but when that failed we went to button-up rompers put on with the buttons in back. When she outgrows them completely come fall, I will cry.

        Oh, and the pajamas failed because Ms. Hypermobile SuperStrong managed to RIP her pajamas open from the front, get her arms out the top and then strip herself naked. Seriously, we could do a vegas act.

        • jenrose1 says:

          Oh, and that was after duct tape belts failed because she would bruise her hips in order to pull the diaper off anyway.

        • skyrose says:

          Wow! She’s a little Houdini it sounds like! *lol* Take the act to Vegas and maybe she can earn enough money to be able to afford new clothes when she makes escapes from the current ones? I was tempted to get Ethan a baby straight-jacket to keep him in clothes. (And then there is always Duct Tape… Duct Tape solves everything!)

          And what is it with kids and picking their diapers? My Godson (diagnosed Autistic with Pica at age 3) ate his danged diapers. Drove us BONKERS.

          When Ethan did the majority of his nudist-act, he wasn’t potty trained (tho he was on the verge of daytime, so it wasn’t “too” bad). We were “lucky” that he’d leave his cloth diapers on most of the time during the day. Night was another story. He’d never leave them on then. I was so tired of being peed on when he walked into my room in the middle of the night to nurse. I slept on plastic sheets until about a year ago πŸ˜›

          When we pulled up the carpeting in the hallway, we found HUGE pee-stains. He would wake up, walk a foot, fall asleep and apparently pee. Wake up, walk another foot, fall asleep and apparently pee again. It was a trail of Ethan-Shaped pee stains. I swear if I didn’t laugh about it, I’d still be crying…

          I swear my kids are why I have an eye twitch now.

          • admin says:

            The Ethan-Shaped pee stain anecdote? BWA HA HA! I’m seriously loling over that.

          • jenrose1 says:

            The only problem with taking her to Vegas is that I’m afraid that if I decide to profit from her strip act, Child Services will come and take her away. Some days, that doesn’t sound like a bad thing….

            We’ve done duct tape. She totally defeated it, and I’m a duct tape artist. (Quite literally, I made a mei tai out of duct tape once, with a heraldic panel.)

      • bondo says:

        Hahaha! That’s hilarious!

        Ruby will wear clothes when we’re out, she knows she has to and it doesn’t seem to bother her. We went through the same thing, if she stayed dressed through her sessions she was praised.

        Ruby wore one dress last summer, ONE! I had to go and buy about 5 of the same dress. Thankfully that is over and she never wants to wear that dress now. It was hideous too, looked like something from Mama’s Family.

  • bicrim says:

    yeah. I’m so sorry, mama. It’s so hard when they are awesome and smart and funny but also fucking aggravating and infuriating, and you know it’s not their fault, but you are angry anyway, and then you feel like shit for yelling.

  • Anonymous says:

    billiebutton

    This must be so hard. The only experience I have with living with anyone on the spectrum is my partner who we believe is high functioning. We are lucky that his experiences are very mild even as a younger person ( I have heard that it can be much more obvious and challenging in the early years). Now, because he’s moulded his life in such a way it’s rarely and issue and I don’t notice it unless something he wasn’t expecting happens which triggers his high levels of anxiety or when people comment on how quiet and emotionless he is, or when I notice them noticing his little quirks.

    My sister on the other hand has psychosis. I don’t really remember life being challenging when she was Tempest’s age but by the time she was in high school and I was just hitting puberty, through to now as adults who live separately, it has been the kind of hell you describe. I swear that there were times when her psychotic behaviour had the rest of us behaving in ways we never would have otherwise. I could write novels on the ways in which living with someone with psychosis has affected my life and on the whole it would be negative. It’s not fun and it’s not easy and there were times when she wanted to die so badly that I started to wish she would because at least it would make her happy. She is mostly (and I say that tentatively) ok now but by ok I mean, ok in relation to what she was like at 16. Compared to most people she’s still a very challenging person to be related to.

    I am so sorry that you have to face this kind of stuff as a parent. It must be so hard. I am glad you were able to write so openly about it though. I can say with certainty that your honesty has helped many people in many different ways.

  • Behavioral stuff is messy and exhausting. And I say this not as a parent of a child with behavioral issues, because I’m not, but as a former teacher and tutor who dealt with these issues in “a couple hours a day a few times a week,” which compared to all the time is absolutely nothing.

    I’m really impressed (if I can say that without being patronizing) at the script you gave for how you and Curtis handle these issues. That must take a LOT of restraint and self-control.

  • ppplmgwiw says:

    Somebody called that magical? For serious? How is having a child with any kind of challenging chronic health issue even remotely magical?

    • admin says:

      Ever read that Holland thing? Google, “special needs” and “holland” and you’ll probably find it right away. That’s just one of MILLIONS of other pieces with the same tone: this is beautiful in it’s own way! Love! Magic! Sparkles! Special needs is awesome! I understand what they’re *trying* to do, but it ends up sweeping the reality under the rug… and parents who are having a hard time end up feeling sort of isolated and guilt-ridden when they have days where they resent the disability an all the BS that comes with it. It creates this illusion like we’re all magical strong people who love 100% of the time and never crack under the pressure because we always see our kids as superawesome special gifts.

    • jenrose1 says:

      I’ve had other parents of special needs kids say that “My child is the best thing that ever happened to me.”

      I say that about my older kid. But not my younger. Seriously, set your sights higher.

      Yes, having Shiny and her special snowflake rare chromosome disorder has been educational. It’s pushed me to learn constantly. And sucked my energy away from everything else I’ve wanted to do with my life. I love her. It’s not what I chose or what I would choose. And it’s certainly not flippin’ Holland.

      • ppplmgwiw says:

        It’s not the same, but it reminds me of when people have said of my 20+ years of anorexia, “It’s a learning experience.” I just want to say: fuck you–as much as I learned about myself going through it, there are many days that I wish I was a little less knowledgeable and a little more happy.

        • jenrose1 says:

          Oh god. The whole “What doesn’t kill you makes you stronger”. I’ve had days when I looked up at the sky and said, “COULD I HAVE A FUCKING BREAK NOW? AM I NOT GOOD ENOUGH????”

          Spare me the learning experiences. I’m too smart for my own damn good as it is, or so I’ve been told.

        • admin says:

          To think anyone could say that about 20 years of ANOREXIA… jesus.

          • ppplmgwiw says:

            I think most people really just don’t know how to deal with other people’s suffering. A lot of people try to “fix” it or make it better–i.e. justify it somehow, show the silver lining in the cloud, etc.–and it makes them say dumb shit.

            • admin says:

              The people who are honestly well intentioned don’t get on my nerves the same way the ‘clueless experts’ do. The ones who have no experience whatsoever on the topic but miraculously have a cure for you because they read it somewhere, or they babysat some kid once, or they’re a teacher’s aide or ECE or something (those are often the worst for this) or are simply some random person who totally knows your kid is fine and just needs some love that you’re unwilling to give them. As though all the years you’ve spent in this have simply made you too close to the issue to see clearly. Like this person, for instance.

              • itsyspy70 says:

                A+ awesome for the comment being from anon as well.

                It doesn’t seem to matter what the condition/event/reality of whatever no-really-this-isn’t-magical-mostly-it’s-fucking-awful-and-i’d-never-willingly-choose-this manifests as… from Aspergers, anorexia, cancer, chronic pain, yes, you can learn valuable lessons from them that can have a positive impact on your life. Yes, I doubt I’d have the specific insights I have (and at the age I’ve had the “fortune” to develop them) had nothing bad ever happen to me.

                It wouldn’t take me two fucking nanoseconds for me to pick “yeah no thanks on the cancer thing” were I given the choice.

                Also fun: when people think that because you’ve dealt with something for an extended period of time that it has somehow become less of an issue.

                • jenrose1 says:

                  I had a miscarriage a few years back, and a young woman who knew me came over and ran through a whole laundry list of “shit you don’t say to someone who has just had a miscarriage”. The only way I got through it was to mentally envision a drinking game.

                  I don’t remember it word for word, but it went something like this.
                  “At least you can still have another baby” *swig*
                  “Well, it’s probably better that it happened now” *swig*
                  “At least it didn’t hurt very much.” I just stared at her and said, “Actually, it’s been excruciatingly painful.”
                  “It’s just nature’s way of taking care of a flawed baby.”
                  There was more, but I thankfully don’t remember the full list at this point.

                  When someone goes through a shitty experience you have no experience with, if you find yourself trying to fix it or find a bright side, shut the fuck up, LISTEN, offer them a hug, bring over a meal, do a load of laundry, and then go home. Some things are just not fixable.

  • bolton_bunch says:

    Interesting read, and I’m sure its very rough. You’re a great mom, I can tell.

  • starfish11 says:

    I hardly ever comment, but this really touched me. We deal with similar things every day and sometimes I get so damn tired of it.
    And when I try to talk about it people try to cheer me up with the old, “But you do such a good job! I could never cope with what you do!” until I could just scream myself. I DON’T do a good job, we just cope in whatever way we can because there isn’t any other bloody choice. These kids are mine and they’re here and I have to do it whether I want to or not.

  • crunchynurse says:

    Parenting aspergers kids

    I’m sorry you have to deal with all that every evening. You are right, parenting kids on the spectrum just plain sucks. My aspie son is 9. He’s very difficult to love. He argues with everything I ask him to do or not do. He has no respect for anyone else’s boundaries. He is sensory seeking. Never satisfied with anything that I give him or do for him. I have a six year old also, who is a very sweet little boy being ruined by his older brother. They fight constantly. But on the rare occasion that I am alone with my younger son, he is a delight. I hate that his brother turns him into a frustrated ball of rage. And I hate myself for feeling the way I do about my 9 year old. I hate that I can’t teach him to behave and be respectful of me and others. I feel like a complete failure as a parent, often.

  • jenrose1 says:

    Christ, that fucking Holland thing makes me want to bite people, and not in a special snowflake way.

    Our tribulations are different, quieter, but still soul destroying. I’m a fucking attachment parent who can’t stand to be in the same room as my child because I’m just that tired of being injured by her. If I hear her demand Napping House one more time I just might scream. Except that I know I’ll hear it a dozen more times tonight in the hour before bedtime.

    We just got genetic testing done, and people on pregnancy boards are all, “I don’t understand how anyone could abort a child just for having special chromosomes, Down Syndrome kids are so sweet.”

    And I’m like, “Yeah, and if my kid had down syndrome, our lives would probably be a hell of a lot easier and more predictable.” And I cannot do it again. If I find out tomorrow that our tickets read “Holland”, the trip is fucking canceled and that’s all there is to it. The special tulips can be stuck where the sun doesn’t shine, I’m too old and sick and tired to do this again if it can be avoided.

    • admin says:

      The one thing the scared the fuck out of me about having to take so many meds while pregnant was that. And no amount of logic, research and talks from my specialists, midwife and doctors about how completely NOT POSSIBLE that is on my dosages/types would take that fear away. So really, I don’t blame you.

      • jenrose1 says:

        I seriously don’t think I could do this again. Under any circumstances. The being pregnant thing. It’s just… it’s too much worry, too much ill, too much waiting. But I’m in a lousy place right at the moment because the test results should be in tomorrow.

        • admin says:

          I hope the results are… I don’t know. Good. Whatever that is. :-/ I’d be terrified. That’s a big part of why we opted out of prenatal tests: we can’t handle the stress of it.

  • Is she on a medicine that you can give her a half a dose after/around dinner time to help her remain calm through the evening hours? I only ask cause I see that you mentioned that the evening routine of feeding the baby, eating, doing other things got you to the point that she was past her medication working so I was just curious of that was an option for you or hell, maybe it’s BTDT and it doesn’t work or it keeps her up even later or something. I’m just throwing it out there!

    • admin says:

      Stimulants don’t stimulate kids with ADHD brains: it focuses them.

      We’ve experimented with short acting pills in the evening, but she has a ridiculously fast metabolism and they seem to go through her in about 40 minutes. We’ve also tried half of her long acting, which did give a lot more control but it was far from ideal. She said she feels better with it, but right now we don’t have a script for that (it was just an experiment we tried with some leftovers we had laying around from an earlier script of the generic brand), so we have to organize it with her doctor before we can do that regularly. His last advice was to give her clonazipam and we just… don’t feel comfortable with that. I mean, I understand in many ways why it would be beneficial and why it could legitimately help her… but it just seems like a lot of pills. Choosing to medicate, how to medicate, and finding the balance between your comfort zone and what helps is a lot harder than it looks.

      • That’s what I thought! But one of the girls I babysit for was recently diagnosed ADHD and the doctor told the mom to only give her half at night if she needed it or it would keep her awake longer. I didn’t think it sounded right then!

        I don’t blame you at all. I’ve mentioned before that my mom’s a special ed teacher and while I don’t know the struggle parents go through day to day, I have seen how hard it is for them to decide which meds to use and how to use them and how to deal with it all. Several of my mom’s behavior kids have ended up in the hospital this last year because their doctors over medicated and then had to wean these poor kids off the meds and restart the whole regime. It’s a hard, hard thing to balance what works with what she needs to make sure she can function to the best of her ability.

      • _delphiki_ says:

        I hope I’m not stepping on toes with this comment.

        As a parent who’s had a kid on almost everything imaginable- any benzo is a bad idea for a kid. It almost always revs them up after 2 or 3 doses. If you decide to medicate for sleep (which sounds like it might help at this point) then Clonidine, Tenex, Trazadone, or any of the tricyclic antidepressants would work better (remeron or elavil.) My son has been on clonidine since he was 3, with no apparent side effects.

        • admin says:

          Clonidine, that’s it. I said clonazepam but I meant clonidine. That’s the one we have. We have a bottle of it, but they’re all 0.1mg doses and we tried one once and it had zero effect. The ASD therapist said it’s just a starter dose and that she’d probably do better on one much higher (particularly in light of the fact that she’s redheaded, and redheads generally need more dosing to feel an effect), but I’m battling my own demons and it’s really, REALLY hard to try… even though I know it may help her significantly and make her happier. :-/

      • Anonymous says:

        I know you have tried a ton of stuff – but for the adhd portion of the gig – have yall given the patch a shot? Maybe that way you can remove at bath time shortly before bed so she can sleep?
        Just a thought!
        And no – it’s no picnic. I dont have a child with Austism or that falls on the spectrum – but I actually read an artical today that may have been of interest to you (damn me for throwing it out so quickly), but it was about a mother who “didn’t like her child.” It wasn’t that she didn’t love her – and for the longest time she didn’t know WHY she didn’t like her. Then she found out about the autism and realized that the idea of the child she had in her mind and her real one didn’t match up and it was disappointing and frustrating. She also worried about how her daughter wouldn’t get the same chances SOCIALLY in life.
        My thoughts and heart go out to you – it certainly seems like a tough road. But as long as yall don’t give up and continue doing the best you can – you are doing GREAT!

        Shelley

      • chem_nerd says:

        For what it’s worth…

        (Background – I’m an adult Aspie, and I clicked my way over here after reading something interesting you said in dot_gimp_snark)

        Goodness knows there’s no one answer that’s right for everyone, but I’ve found that an SSRI (prozac and family) does wonders for a lot of my issues – in addition to dealing with the chronic depression-like symptoms that we think are the result of my not producing enough seretonin, it also acts as a mild mood stabilizer and anti-anxiety drug. It doesn’t tend to have a lot of side effects, and it’s got enough of a half-life that it doesn’t have a sharp now-you’ve-got-it-now-you-don’t crash-point – I had a much worse crash-point when I was still taking stimulants for ADD than I’ve ever had with the prozac. I can actually go two to three days if my prescription runs out before I feel the effects of not having it, though admitedly, my mother can tell within about two hours if I miss a dose. It does make me a lot less volatile, though, and also a lot less prone to panic attacks and other anxiety symptoms. It also greatly helps my insomnia, likely because seretonin is the biological precursor to melatonin, so a shortage of it can cause all kinds of screwy stuff. It might be worth looking into – hanging around the Asperger’s community, I’ve noticed that an awful lot of us seem to have problems with seretonin levels, and I’m not sure it’s a coincidence. Similarly, if she has problems settling down to sleep, you might want to ask the doc about trying commercial melatonin supplements.

        As for ADD stimulants, I took them as a kid. They helped my attention span then, but now I get terribly overstimulated from them, and my ADD goes unmedicated, because I can’t safely take any of the medications for it. If she seems really twitchy, or overexcited (my husband and I refer to the state as ‘jazzed’), it might be worth checking.

        I hope you find a working solution for all your sakes. I haven’t had a chance to find out what it’s like as the parent (yet – hubby and I have only been married for 8 months), but I do know I have yet to find anything more frustrating than that point of complete meltdown, and I can’t imagine that it was ever any easier for my parents than it was for me. *e-hugs*

  • briannablade says:

    Thank you so so much for writing this. This this this is EXACTLY what I’ve been wanting to say but can’t. This is the kind of stuff I have to deal with with my son. Thank you for having the courage to say it. It’s not a magical thing and it pisses me off that people say it. There are times that it’s beautiful and there are times, like most evenings here as well, that they’re not and you want to scream and you can’t because you’re the parent.

    You’re so not alone. Parenting a child with Aspergers is so fucking hard it hurts sometimes and the feeling of failure and absolute frustration can be overwhelming.

    I’m sorry that you’re dealing with this too but it feels good to know that I’m not alone.

    • admin says:

      Why is it that it’s always the evenings?! I mean, not that I’d want it to be any time of day in particular… but why the evenings? It’s ALWAYS evenings that are bad.

      And, thank you/you’re welcome.

      • briannablade says:

        I’ve been asking myself that same question over and over. The only answer I’ve come up with is overstimulation from the day/getting tired. Except they don’t go to sleep. I wish I had an answer. If you figure it out, let me know because I’d really like to fix it too.

      • ashosaurus says:

        My cousin has tourrets and OCD (which, as an adult is well controlled with a miracle drug that the FDA approved a couple of years ago). She says that getting tired makes it a million times worse. Almost like the brain/body is just over it and everything starts misfiring.

        Either way, I think the magical part is your compassion – not the process. There are parents out there who would beat, abuse, or otherwise mistreat their special needs kid(s) D:

      • smellykaka says:

        Evenings are bad for me too. But that’s dysthymia, not the spectrum. I find life much easier to cope with in the morning.

      • delababy says:

        The evenings were really bad for my little brother too. Now that he is older and can verbalize the feelings and what was going on, he says it was because when he was little (oh wise 12 yr old), he spent all day struggling against noticing every single little thing going on in the room, in his head, in other people’s heads, etc. that he just couldn’t keep doing it well once he was in his home and safe from outside people watching him. He had too much stuff in his brain. He either had the severe tantrums, or swung into a seriously blue/self hating mood. Neither were pleasant, both were awful actually.

        When he was 7, my mom got a trampoline for the backyard. She says that the trampoline and 3x weekly swimming lessons did more to help his Autism than anything else at that age. Every day after school, he went on the trampoline for 10-15 minutes, and whenever he was getting worked up, back on it. It seemed to help pull him through dinnertime. The repetitive, physical motion helped him clear his brain out a little. Not saying it was a miracle cure, but it helped. Also, at dinner, he started taking one Calms Forte (by Hylands). It is a homeopathic sleep aid and they have a children’s type. Between the two, the evenings were more manageable.

        I know there are tons of “it can be just fine why are you struggling” stories out there, but the people who are struggling nightly don’t have the time to sit down and write out their stories to pass around the internet. Just know that you are very much not alone.

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