Autism thread

Preliminary indication for my daughter: she'll be seen 3x weekly by the early autism intervention team. We've been through this routine with my son, who had 4 weekly sessions with the team. Scheduling won't be fun, but it really, really helped my son. Chances are my daughter will also need more support than my son with speech, since hers is much less clear. I will not be at all surprised if she qualifies for special ed/IEP. That means free preschool as well as transportation to and from. That will be a big, big help.

What I keep telling myself is how happy, smart, and loving both children are. What's hard with the assessments is hearing the phrase "not typical" over and over again. It touches a vulnerable spot in me too: why should I be surprised that my kids are little misfits when I always felt that way about myself? But that's not fair to me or them. Must stop.

Here's something I saw on that I thought was really helpful:

I had Philip write back. He said:

I am letting you know about eye contact. My eyes see very well. Most people seem to need to have to look long and hard to make sense of a picture. I can take in a whole picture at a glance. Each day I see too many little petty details. I look away to not get overwhelmed by a lot of little bits of information. I watch things that a teacher or person I listen to tells me to watch. This helps me concentrate on what I should be focusing on. I can search for a teacher’s voice to try to focus on. I am academically learning best when I sit side-by-side with a teacher. A seat on the side keeps me focused on your voice and not on visual distractions. I am assessing many sounds too. I have to erase some stimuli to access my answers to people’s questions and meet their demands. That is why I don’t make eye contact. I am always listening. I listen a lot to voices. I so love when people talk to me and are not talking like I am not there. I am active because I am unable to feel my body well. People think I am being rude but I can’t help it. I need to move to feel my body, but sitting down at least helps me not walk away from you. Please peacefully talk to your nephew. Let him know you understand. I am sad when people think I don’t like them. I love people.



Philip is an 8 year old autistic boy. If my son had the words, I think his answer would be a lot like this little boy's.

Wow, I need to post that next to my computer. Smart kid.

Double post for extra kiddo smartness. "Typical" is often overrated anyway.

Reminds me of both my son and myself.

Sounds like my daughter. She gets overwhelmed so easily. My parents used to think she didn't like them because she would hide under a table and cry for hours when they visited.

My parents are loud people. With big leaping dogs that they bring everywhere. Fortunately, they understand being overwhelmed by people and once we explained what was happening, they took it down a few notches and are now having much better interactions with both kids.

Thanks for sharing, Concentric. That certainly felt a bit close to home on a number of levels.
As for your daughter... Scheduling won't be easy, I can imagine, but at least you're being proactive, right? My thoughts are with you, this can't be easy.

+1, DoubtingT. My dad always has the news or some radio talk show on really loudly, I'm sure it doesn't help. Tonight, I only got my son to eat once I took him to the kitchen, away from the dinner table and the blaring TV.

I was listening this weekend to This American Life, specifically #544 Batman. "Batman" is the nickname given to a blind man who clicks to figure out his surroundings. He teaches other blind people to do what he says both in order to become more independent as well as to hold higher expectations. The latter especially seemed like a revelation to me. The hard part is figuring out what a higher yet still achievable expectation might be.

I stumbled across the Vaccines and Autism thread earlier and I had to walk away, because it was just too much for me. In a similar vein, I just can't deal with the Self indulgent parent and general parenting threads, because my reality is just so far removed from other parents'. I don't know if I'm right or wrong, it just is. Anyhow, as I was mulling all this over, I came across this article which really resonated with me.
I am not a scientist, but I am a mother — I know why my son has autism (The Independant)
I found really moving, and it really, really spoke to me on some many levels:

At the same time, I don’t want to focus so much on the what and when and where and how that I forget about the who.

Because I don’t care where it came from.
But I am kind of curious.

It doesn’t matter to me why Jack has autism.
But it might be good information to have.


He is broken.
He is whole.

Autism is no one’s fault.


Maybe this is my fault.

As you can see, my feelings about Jack’s autism diagnosis are as complicated as a prism with a thousand colors and angles and light. Some days, my doubts are soft whispers within my heart, other times it’s as though someone is shouting in my ear.

Hearing all this recent talk on vaccines and autism just makes me so angry because there's hard science out there which disproves the link between the two. Vaccines do not cause autism. Period. No "buts", "maybes" or "perhaps". And for some odd reason, I find myself almost offended when people make that claim, and I'm not exactly sure why. It's complicated.

Anyhow, I don't have much to add, since I'm still seeing my kids on weekends exclusively. I do see some progress. Matt is starting to say some words more distinctly (water, plush, mom, dad), but there's just so much ground to cover. And the gap between him and NTs widens every day. It's just really hard not to get discouraged during the meltdowns.

The problem is that the falsified lancet study that made the link is still out there thanks to the permanence of the internet. It was officially retracted, but goodness knows how much damage it did, and it turns up without the retraction when you google it.

So basically what I'm saying is f*** Andrew Wakefield.

(Full disclosure: my Dad had polio. If it weren't for vaccines neither my kids nor I would be here right now, autistic or not. So F*** Wakefield and f*** Jenny McCarthy too)

Anyhow, I don't have much to add, since I'm still seeing my kids on weekends exclusively. I do see some progress. Matt is starting to say some words more distinctly (water, plush, mom, dad), but there's just so much ground to cover. And the gap between him and NTs widens every day. It's just really hard not to get discouraged during the meltdowns.

They meltdowns are hard, no doubt about it, but it's great to hear about the progress.

Try not to worry about the gap. The goal is not to make an autistic kid neurotypical. It's to prepare that kid to be as much of a functional adult as possible.

It's hard work, the hardest I've ever done, but my daughter is much more communicative today than she was even a year ago. She still struggles with eye contact, but frankly so do I so I'm not too worried about that (I see so much of myself in her that I wonder if I'm just an undiagnosed, high-functioning autistic)

We had a big explosion in growth when we stopped asking her questions. My wife read that asking a lot of questions of an autistic person is very stressful, and causes them to pull back into themselves.

Instead we've been using open statements and letting her respond, or not, with no pressure.

So instead of "is that waffle tasty?" We say "that waffle looks tasty."

And instead of covering her ears and shying away, she says "yeah. I like waffles."

YMMV, of course, but it's been like night and day. It's hard to remember to do it sometimes, but I think she can tell we're trying to make our world comfortable for her, so she comes out of her world more.

Thank you, DoubtingT. The questions are definitely off the table, our ABA therapist was pretty adamant about that (even though I still relapse, out of habit). And eff Wakefield and McCarthy indeed, they've done so much damage...
I definitely don't care about Matt being NT, but it's hard to ignore the gap when it's staring you in the face. I'm currently substituting for an attending during her maternity leave, and she came to see us last week with her newborn and she just kept going on about how her 2 year old talks to his sister, holds her little hand. I remember how Matt completely ignored his brother when he was born. It's hard not to compare even though I know I shouldn't.
And I know exactly what you mean when you say you see yourself in her. I haven't spoken of this much, but I have a lot of unanswered questions too and am in the process of seeking answers. We'll see.
In any case, I know that he has his own standards. It's why I hate it when my husband says he's love for Matt to say "I love you, Daddy." I just don't care because he shows it in so many different ways every single day. But that's how it is in this world. You need verbal communication, those are the rules by which we play. So the plan is just to try to help him to be as functional as he can be. And that's that.

Well, my son got suspended yesterday. We have a meeting with the principal tomorrow.

His para (aide) was "on break" when he lashed out at a kid that (he perceived) was "teasing" him. Ugh.

Yikes, I'm sorry to hear that, Wink. Hope the meeting goes well...

My son now has some kind of stomach virus. Right now I'd love to believe at some point in his life, he will gain the ability to know to vomit into a garbage can or the toilet. It's all over the place now: carpet, bed linens, clothes, his hair. We've given up on cleaning because he just throws up again once we finished. The thought that we'll be doing this kind of thing (and quite likely changing diapers) years from now is so depressing.

Poor guy doesn't seem too miserable at least... Just acting like he usually does.

I'm so sorry to hear that, Gewy, I hope he feels better soon. Any chance you can give him something to lessen the nausea and vomiting?
We're dealing with our own strain of stomach flu as well, and my boy had a little accident on my parents' couch this morning. Hubby texted me there was feces everywhere, him, our son, the couch... Lovely!
Sending you good vibes, Gewy, hang in there. *hug*

Wink, how did the meeting with the principal go? I forgot to ask before now.

It's hitting here too. Little man had really acidic diarrhea that caused his butt to be raw and bleed. Many fits were thrown at diaper time, and I couldn't blame him for a lot of it. A few diaper changes ended up being one of us holding him down while the other cleaned up, and treated the area. Now my wife has it.

Tristan turned 3 on Monday, so we had to go deal with signing his IEP. The current plan is to have him start routine special education classes 4 hours a day, starting in a couple weeks. My wife has been a rockstar during all this, as a lot of it happened while I was on-call and couldn't commit to anything (ended up working over 100 hours last week). She was able to find a new daycare because his current daycare is so far away, and pretty much get everything else set up while I was out.

We decided for his birthday not to do anything big (considering the snow shut down roads around here for a couple days), so we ended up just taking him shopping for toys. Sabastian will always have the better birthdays just because he was born in August, and Tristan in February. August is just so much better for party or event planning. It makes me feel kinda down, but he really loved the one toy I picked out for him beforehand... I just wish those two would stop fighting over it.

I should have got around to updating the suspension status...

The meeting went well - he was allowed to return to class immediately after it.

I understood the school's (legal) need to protect the students... including him (reminder - he's 11, grade 6). I couldn't fault their decision.

We came up with a 5 point scale of "I'm calm" to "Hulk SMASH!" (using Minecraft characters - Steve through Creeper, actually). To help him, more easily, communicate his mood to his teachers. We'll see how it goes.

I love the Minecraft scale.

Vomiting has subsided thankfully. Now it's just usual cold symptoms again. He just got over his last cold a few days ago- so frustrating. Tomorrow his asthma will probably act up. We'll have to hold him down for his nebulizer treatments and I'll miss more work.

All of this is stressful, but what makes it intolerable for me is the thought that this may never change. We'll be doing the same crap when he's a teenager and adult.

Good to know that the vomiting is subsiding, Gewy. I hope the next days will get better. My thoughts are with you.

I'm glad to see so many updates from people. I've been posting less regularly since this term has been very, very busy. But I've been reading all of your posts and thinking of you all. My daughter has been ill very frequently this term, so, like you, Gewy, I am dreading the thought of missing more work. I hope your son stays healthy.

My son's spring preschool conference was today. He's made decent progress on one IEP goal without meeting it, and none on the other. Still, he's much further along than last year. The big task will be figuring out a good placement for him in kindergarten. Namely, will it be support in a mixed classroom, or 50/50 time in the autism or behavioral issues classroom and the mixed classroom? The school will have a functional behavioral analysis done to see what the cause of his meltdowns in school might be, and improvement in self-regulation will likely be included on the IEP for next year. Kindergarten will be a big transition, since he'll be in school all day, the classroom activities will require more focus and independent work, and HOMEWORK will begin to be assigned. HOMEWORK.

My daughter began her work with the early autism intervention team today. She's further ahead of where Alex was at the same age. One of the therapists who worked with Alex is also working with my daughter, and it's good for me to see her do the same exercises with my daughter. We'll see how it goes.

Good to know that things are moving along nicely with your girl, and that things are falling into place for Alex. I can't imagine the transition to Kindergarten will be easy for him, though. Thanks for keeping us updated though. I'm thinking of you and yours, Concentric.

Guess I can throw in a little update.

We too, survived the flu, although it was respiratory in nature. After 3 weeks of being sick, we got Owen checked out and he had a very minor ear infection and we were given the option to fill the antibiotics if he wasn't getting better. We eventually did, and he's finally on the mend.

He is in his 4th week of IBI and it's going well. We've had very good success with visual scheduling with him every morning. It seems to click in his little head and he doesn't throw a tantrum when we tell him it's time to go to "school". They are working primarily on toileting at this point and he is wearing underwear all day and diapers at night with a few accidents here and there throughout the day. His speech is improving so much, it shocks us regularly how well he is talking. He comes out with 5 and 6 word sentences sometimes that just blow us away. IBI seems like a good primer to school as he goes for 4 hours a day, 5 days a week. The only problem is he works 1 on 1 with a worker, and doesn't get any socialization. Thankfully he still goes to daycare in the afternoon.

He's sleeping very well, almost 12 hours at this point with the caveat that he is sleeping in bed with us. We've resigned to the fact that if we are to get any sleep it's going to be with him in the bed until we have the energy to get him back in his own bed. He's such a restless, fitful sleeper that we end up waking up multiple times in the night when he is in his own bed.

His socialization is going very well. He has 2 best friends now, and it warms my heart to see him play with the boys, and not just beside them. I know school is going to be hard, but I'm glad to see him getting some life skills that might bode well for him as he gets older.

Unfortunately the one thing that isn't going well is the relationship between my wife and I. It is by no means in danger, but I see us drifting apart a bit. Both working full time jobs, with 2 teenage girls and a special needs toddler is starting to wear us down. My wife is asleep by 8pm when she takes Owen to bed, which leaves me the evening to watch tv, play games etc. Something most people would love, but I miss hanging out with my wife and spending time with her. I know this is not uncommon when parenting a special needs kid and I think we are going to need some counselling. We don't fight that much which is good, we just don't spend much time together that isn't parenting. I'm not worried about our marriage breaking up, I think we just need some work.

Concentric, Owen had terrible speech at the time of his diagnosis (2.5 years old) and he has made incredible gains. I'll comment once again on how similar our kids seem, as Owen frequently gets the "not typical" monicor from various disciplines.

To all going through this, hang in there. We are super parents x10000

I forget if you mentioned whether you have (or looked into the availability of) respite..?

For us, it's awesome! I'm not sure how standard it is, but having 1 24hr (Ie: sleepover) and 8hrs (can be broken up in any amount) "breaks" in a month, is amazingly helpful.

I admit we got very (very!) lucky in his relationships with, now two, "workers". One is a very nice university student, and my son likes her a lot (it probably doesn’t hurt that she's pretty, too). The other is our best friends' oldest son - a fairly typical 17 year old - likes games, and "guy stuff"; he jumped at the chance to make some cash on the side, and my son lives hanging out with him.

Having at least 1 "date night" a month helps us have the time to reconnect.

(I feel like I'm "bragging, and don't like it :(, but I can't help but preach the awesomeness that is "respite" that works. Our first worker wasn't great, but we kept looking.)

El P, it's great to hear that Owen is doing well with IBI and that he's getting enough sleep. And playing *with* children, not beside them.
About your relationship, a word of caution however. I'm not saying it's the same, because Matt's father and I had a lot of stuff going on, but it kinda started out like that for us. Drifting apart with no time together.

As for me... *sigh* Things aren't that awesome. Matt just isn't progressing as much as he's like him to, and getting help is complicated and not that easy. As you all know, I work in Paris, so I don't get to see my boys at all during the week. Our ABA therapist is supposed to supervise us, but I haven't seen her in weeks. She's taking on additional courses too, and spending weeks in the Netherlands with her own supervisor. And this morning she had the guts to send us an email kinda criticizing us and saying that we aren't filming ourselves enough. I'm with my kids barely 48 hours a week, and when I come home, I have laundry loads, grocery shopping, cooking and cleaning to do. If I'm lucky, I'll get 30min tops one on one with Matt, because there's also his one year old brother to take care of. I'm so pissed at this email (and she has the gall to remind us that we need to act now for Matt, when things have been dragging along for months), I'm so angry I could spit nails.

It's just hard not to despair. There's no relief, no help to be found, the government help isn't going to come through until several months from now, and it'll probably just be 600€ a month (a pittance when you know we're spending 5k€ a month. The specialized centers are all full with extensive waiting lists. I'm doing the best I can here.

Sorry Eleima. I can relate to most of what you're going through unfortunately. Our therapists haven't been so explicitly critical, but they definitely push my wife to work with our son more. It's hard though, with all the chores and lack of good sleep and depression. Then she feels guilty and resentful whenever she meets up with the therapy supervisors. It would be tolerable if our son was making se kind of clear progress with our efforts, but he's just not. Part of us has just given up to some extent.

And yeah, the strain on the marriage is pretty immense. I feel like our physical health is suffering as well.

double post

gewy wrote:

Sorry Eleima. I can relate to most of what you're going through unfortunately. Our therapists haven't been so explicitly critical, but they definitely push my wife to work with our son more. It's hard though, with all the chores and lack of good sleep and depression. Then she feels guilty and resentful whenever she meets up with the therapy supervisors. It would be tolerable if our son was making se kind of clear progress with our efforts, but he's just not. Part of us has just given up to some extent.

And yeah, the strain on the marriage is pretty immense. I feel like our physical health is suffering as well.

Gewy, I don't think any of us should be surprised that our marriages are going through hell. I sometimes have such resentment towards friends of mine with neurotypical kids, who think that their trials and tribulations are so difficult. I sometimes feel like saying "do you have ANY IDEA?".

Right there with you. I was just reading the parenting thread, they're all going on about potty training which is no more than a dim hope for me.
As for marriage... What marriage? My husband has basically severed all ties in all but name. *sigh*

What I've been wondering while reading your posts, Eleima and gewy, is whether your therapists might be expressing their frustration by doing a little push-back, though it's not professional or accurate for them to do that. But getting that feedback really hits in a very vulnerable spot. I had to limit the amount of therapy my son was getting every week, because the commitment was just too demanding. You are both doing quite a lot for your children, as well as providing for your families. I truly admire that in both of you (and in all of us too). In my heart, I think that things will get better for all of us and for all of our children.

Thanks for your post, Concentric, I've been wondering the same thing. What concerns us, as parents, is that the therapists doesn't seem as implicated in the process as she should be. As it is, Matt stays at a home daycare all week. This person had an older boy under her care when he himself was diagnosed, and she became very involved, learning ABA and the like. This older boy now goes to school in the morning, and comes to the home day care in the afternoon. So she only has Matt and the other boy. But the therapist who is BcABA, only comes a few hours, and is away on trips on a regular basis. I myself haven't seen her in weeks (because I come home on Friday afternoons and leave on Sunday evenings). And as much as I think it's important that we all are implicated in the process, I don't think watching and commenting on videos is truly an efficient way to go about things. I don't think it's helping Matt. Matt needs one on one time.
Anyhow, the bottom line is that I'm trying to find other centers for him in Paris. As it is, we don't think we're getting our money's worth, so to speak and that he isn't getting the care and attention he needs. It's good enough for now, but it's not enough. The only problem is the waiting lists.
Anyhow, sorry, I'm rambling. He is making progress, though, pointing at things, and rambling away in his own little language. He did wave and say something that resembled "bye" (au revoir) when I left last night though, which had me tearing up.