Thursday, July 10, 2008

The Sad and Worried Autism Post

So I'm a little sad. And I'm a little worried.

Most of the time I feel pretty good about Jack. I know he needs extra help and I know he has a tougher road ahead of him than many. But I feel good about him.

He's smart. He's loveable. He has charisma.

He seems happy most of the time.

A lot of the time I feel that he just needs to grow up a little. He needs to learn to be comfortable and confident in himself. If he can do this, I think, he'll be fine. He'll be normal. Or as normal as anyone else.

I know he's autistic. I know he will be autistic for the rest of his life. But I feel that he can learn to compensate for his autism. And he'll be fine. He'll be happy.

And then there are times when I look at him and I wonder if I'm in denial. I wonder if his autism is more profound than I am aware. I wonder if he is going to struggle in life more than I am willing to admit.

I wonder if this mostly invisible disability he has is invisible to me too.


I've been trying to find him private therapists lately and it's tough. They won't call me back or they don't take my insurance, or I don't know if they're any good or not. I'm looking for speech and OT and maybe some social skills groups, because I am aware that he needs help in these areas. But what else does he need?

If I knew, really knew, what he needs, I would get it for him. But I don't know. Don't worry, I'm not in freak-out mode like in the past. I just wish I knew how best to help him.

Because I want him to be happy.


I watch Jack at a playgroup. There are five kids, ages almost-two to six-and-a-half, playing together on a swingset. Jack has climbed a tree across the yard and is watching them.

He seems happy, but I wonder if he is content to sit and watch, or if he wants to play, but doesn't know how.

I want to live inside his head for a day, or for a week. I want to know what he thinks, how he thinks, and what he wants. I want to know what I should help him do. Should I help him be comfortable by himself? Or should I walk him over to the group and help him join in?

I end up just watching him.


I watch Jack at karate. It's not going very well. At first he is happy and running around, but when his instructor tries to get him to listen, Jack falls to the ground, limp. He shakes his head and looks away. I have to intervene to get him to listen enough to participate.

Halfway through class, Jack starts to sob. The instructor tries to talk to him but obviously can't understand what Jack is trying to tell him. I beckon for him to come off the mat and he does, telling me that his tummy hurts. Does he want to do karate today? He says no. Does he want to come back next week and try? He says yes.

He tells me he wants enough stripes on his belt to graduate. But this is only his fourth class.

Once he has settled down, he seems to forget that his tummy hurts, if it ever did. He is happy again. I wonder if he will improve, or if maybe he's not ready yet for karate.

We'll bring him for the rest of his free trial month, but if things continue like this, it is unlikely that we will sign him up for the six-month contract.


I want all my kids to be happy. I think Jack is going to have the hardest road to get there.

Sometimes it makes me sad. And sometimes it makes me worried.


  1. Hey there,

    I know I've never really talked to you about Jack before, but you have done a phenomenal job with him. Seeing him in the classroom this year, I've seen such a change. I've seen him laugh with his classmates, I've seen him say "sorry" to people (even without being prompted by an adult), I've seen him ask if one of his classmates was "okay" when she wasn't feeling well, I've walked into the boys' bathroom and hearing Jack and Daniel giggle about something (to this day...I still don't know what they were laughing about). And on the days that I co-op, he sometimes decide to plop on my lap and is content to say "read to me" or ask me to play with legos with him.

    He's a great kid, and a heck of a smart one too! You're doing a great job!

  2. I think all parents struggle with this - wanting their children to be happy and successful, but not knowing how to help them find the right path to get there. Yes, the road may be rockier for Jack, but at least he has a dedicated mom who's trying her best help him along the way. Don't ever doubt that you're doing a great job.

  3. Oh Stimey, there's so much here that I'm afraid of highjacking your blog! :-o momma hu's words are VERY important for you to take in. Sure, Jack struggles with many things and it will look different on different days; overall, it sounds like he's doing pretty well.

    Have you had any discussions with a developmental pediatrician to get some preliminary input on what Jack's most challenging areas may be? My personal feeling is that you should atart by finding the best OT you can —— someone with sensory processing training or at least a really firm handle on it. As I was reading about karate class, it struck me that maybe some of the challenge for Jack is sensory overload or an inability to process multiple kinds of input at the same time.

    As you observe and tune in to Jack you may start to see patterns emerging. e.g., Nik loves lights and music; he also likes playing with and listening to his OT, Miss D. He cannot focus on all three at the same time though. When Miss D tries to join in with what he is doing (playing with a lighted musical toy in the darkened room), he can't take it in so he stops what he's doing and moves on to something else.

    Jack may be having difficulty with his own variation of that.

    I know you're not going down the rabbit hole (please, please don't's so ugly down there, trust me!!). Take a deep breath and just keep doing what you are doing; you're doing fine. Honest. xo

  4. I have felt this, and continue to feel it -- all of it. Sadness, worry, wondering about my denial and his future. It's hard.

    But I will tell you that in our experience, time --and "growing up" -- does make a difference. My guy (diagnosed at 4, now 11) is fully mainstreamed, plays two instruments, and takes accelerated math. He has a best friend. Is he happy? Yes. Does he still struggle with situations due to the autism? Yes. But his life, and ours, is good.

    What the future holds remains to be seen. It does keep me up some nights. But he is succeeding now in ways that I couldn't have predicted when he was four, five, or six. Why shouldn't he continue to surprise me?

    Jack is so very young, and off to such a great start. And with two brothers and a family like yours, he has a built-in social skills group. (My older son was always my younger one's best speech/play skills teacher.) Keep watching, but have faith in yourself, and in him.

  5. Jack is lucky to have a Mom like you, who is so willing to do whatever it takes to make him happy and help him make his way through life on his own terms. You will figure things out, I am sure, although it will probably take time. And just having you as his advocate is going to help make Jack's life a lot better.

  6. Jack and Bub are so alike. Bub does that drop to the floor thing too, whenever he's anxious or embarrassed by his feelings of perceived failure (i.e. he has made an incredibly minor mistake and been gently corrected for it). Yesterday he went to pick out some clothes and he was all proud of himself because he found some pants. I told him it was a hot day so he needed to find some shorts and he just collapsed, wailing. "Are you embarrassed?" I asked.

    "Yes!" he wailed.

    So I did a whole shtick about how everybody makes mistakes and it's okay, we just say let's try again, and it actually seemed to work a little bit. He insisted that I be the one to say "Okay, let's try again!" and then when we went back into his room I played dumb for a bit and couldn't find the shorts, so that helped restore his sense of competence.

    The anxiety is what I find so troubling and worrisome - the pit of despair that yawns open for him whenever he falls short of his expectations of perfection.

  7. Sounds like me watching Joey grow up. ;)

    To a more practical end, we use a place for OT called Helping Hands in north Stafford. Not sure if that is in your striking distance or not, but they are very good. Fleming Speech is in the same building, and Carrie Fleming is wonderful. We also had the Matthew's Center, which is in Manassas, but they send folks out to you. They mostly do the ABA and visual learning stuff (like PECS), but they may also know about good therapists in the area, or connect you with parents who know. Also, the folks at Helping Hands may know of other places closer to you.

    Let me know if you want the contact info for any of these folks.


  8. Oh, this sounds familiar... sometimes I worry that although I'm a real parent with Mimi (I mostly just help and advise and protect), I over analyze everything with Rosie. I try to predict, to avoid, to mitigate, and through it all I just worry.

    I know for both of us, as well as for Jack and Rosie, that it will all be OK. They will be just fine. But it won't stop the worrying.

  9. *Hugs*

    Honestly I think every parent goes through what you are. I know I am. For some kids it is a little harder to figure out what is going on. I have a stepson who has never been tested but does show signs of autism (long story there) and now he is 12 and it is still hard for us to figure out what is going on and how we can help (plus he has the teen thing going).

    from here Stimey you are doing a great job!

  10. You put into words exactly how I feel about my own son. I worry and wonder all the time. Does he notice that he wasn't invited to any birthday parties this past year? Does it bother him to hear other kids talking about playdates and best friends? When he gets older and I'm not able to help him navigate through things as often will the anxiety overwhelm him? Will he be sad when he figures out why he's different from other kids? Will he ever figure it out?

    Cripes, it's hard. Hang in there, the fact that you even think about this stuff says a lot about you as a parent. Jack's already got a lot going for him with you on his side.

  11. You are a mom and you have every right to be sad and worried! But unlike so many parents out there, you are an amazing advocate for Jack. Even though you can't live inside his head, you are willing to push for what you know he needs and that means so much. Believe me, that will make all the difference in the future. Hugs!!!!

  12. What you describe, I don't think it ever goes away. I think it changes, evolves, but it's there, always, regardless of how well our kids are doing or how much they struggle, regardless of what the experts say or do--it's there. Our challenge is learning to live with it. To trust ourselves and our kids to do the best we can.

    And on the days when we can't do our best, well, it never hurts to close the blinds, pop in a dvd and eat lots of popcorn.

    Sending you a hug.

  13. Hi,
    I hope you don't mind that I have stumbled onto your blog :) Even though I am echoing what the other's have said, I think you are doing a fabulous job. You don't know how many parents I have met who just get angry and shutdown when an autism diagnosis is made. Jack is so lucky to have parents that are willing to find (no, demand to find) any interventions that they can find. I know so many kids who have been very successful in their lives and studies show that early intervention increases the potential for success. So, in other words, although I am sure it feels so scarey, crappy, horrible, you are so on the right track and a wonderful momma.

  14. What THEY said!

    You really are doing great!

  15. such a brave raw post. thank you for sharing

  16. I know these feelings well.

    I'd be happy to share some names of speech and OT people with you.

    Finding the good ones can be hard; getting in even harder. I've made a zillion calls this week trying to get an appointment with a child psychiatrist (I don't want to go back to the one who diagnosed SB with Asperger's .... long story). The earliest appointment I could find was August 19th.

    It's wonderful that you've given Jack the opportunity to try things like karate. But I also know the sadness and frustration you must feel from knowing something could be so good for him ... if only it wasn't too much for him. We tried karate last year and SB couldn't get past all the "noise" and "violence".

    It's not easy watching your child do their own thing while all the other kids seem to be playing TOGETHER happily and without a care in the world. When I've tried to encourage joining in SB always says he wants to be alone. And yet like Jen, I wonder if it bothers him that he hasn't been invited to a playdate or a party since starting at his new school last October. I'm fairly certain it DOES bother him. And yet he doesn't make the connection between the annoying behaviors he gets in trouble for and his lack of friends. Sometimes it seems like a vicious cycle.

    Anyway, I'm not trying to hijack your comments. Just wanted you to know that I GET it. All too well.

    We just have to keep doing the best we can, right?

  17. Hi Stimey,

    My sadness and worries are about different issues, but they're there just the same. I think it's part of the burden/blessing of having a child with special needs.

    I get so much inspiration from you, who struggles with the day-to-day of ASD but also tries to think always of the big picture. I'm trying to find that balance myself.

    I hope the day you wrote this is just a "blip"--one that'll probably happen again, but not one that'll take over your entire radar.

  18. I have felt that worry and heartbreak - I hate it that we can't fix everything. But for every bad day there is a good day - and I just live for the good days. I hope your today is good day.

  19. One of my friends has a child on the autism spectrum. She said the doctor told her that one way she could estimate how difficult a time her child will have "out in the world" is to look at how many adjustments she'd had to make for her child. Parents tend to make these adjustments automatically and not really notice them until they have to explain them to other caregivers. It's things like, "Well, when we go out she has to wear her earmuffs. And her sunglasses. And she has to have this item and that item. And then we have to count each step as we go down, and we have to get in on the right side of the car only. And then she has to check the seatbelt three times and then we say 'alla alla alla all in free.' And then she has to squeeze her eyes closed when we go past the..." and so on. The more adjustments, the harder the time later on.

    But do I have actual concrete info, such as number of adjustments that are normal (since basically ALL kids need SOME adjustments)? No. Am useless.

  20. I can so, so, so relate. But for my two cents, you make me embarrassed about my parenting skills. Here I am blogging away instead of hanging with D. And I certainly never made up any camps for either of my kids! But we did just have a rock-fest in the jacuzzi - just D and I. That was fun.

    My point... oh yeah. I can't even get a diagnosis so you are my hero. I'm sure if you have an Autism Diagnostic Center anywhere in your vicinity they could give you some wonderful recommendations in the therapy dept. Or you could just do what I do, bug everyone I know with the same subject over and over taking suggestions until you have a general consensus. My friends love me. Ha!

    PS. Did you sing "Erie Canal" on the boat trip? I would have been all over that.

  21. Your last couple of sentences ring so true - my kid isn't autistic, but I want her to be happy and it worries me and it makes me sad. Because I know there will be hard days. There always are.

    You're a good mom to him.

  22. My son's name is Jack as well and I feel your anguish. The concerns you express are normal I believe there would be more reason to worry if you did not feel them.

    I hated martial arts as a kid, although I knew it was doing me some good. It's rigorous and competitive which makes you feel like you're in the spot light some times, especially if you're shy.

    I got over my shyness eventually but much of it came from within and not overnight.

    You have my best wishes

  23. "I wonder if this mostly invisible disability he has is invisible to me too." Really struck a chord with me, a real lump in my throat.

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  25. Stimey, I am glad that I had a brief moment to meet you at BlogHer, wish you could have stayed for the panel. I was thinking that you might be interested in writing on a community autism blog that I started. Anyone can write, just shoot me an email(in sidebar at Autism Sucks) with your email, I will send an invite, and you are in. It is a place to throw down, throw up, throw in the towel. Obviously, autism sucks, but our children don't. We just want to be real. We live in the trenches and we need to talk about it.

    (sorry for multiple comments, had a typo)


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