Autism thread

I keep thinking of what I'd do in your circumstances gewy, but it always comes back to the same way I'd parent any child: Love and accept them as they are, have hope and trust in their future, and never allow myself to give up on them. Though the frustrations shared in this topic cannot possibly tell the whole story they speak volumes about how difficult it can be to hold to those 'simple' concepts.

What can you do besides provide the best most loving environment you can, include your son in everything possible, and hope that someday he might be granted the opportunity to thank you for that? I don't know. I do appreciate your continued willingness to share your struggles here. The same can be said for all of the parents posting in this topic. This sharing helps. Besides venting, it provides opportunities to connect and get outside ourselves for a little while. That added perspective means a lot to me.

sometimesdee wrote:

You know, frak it, gewy. I get it, my kid and I are "not like your child." I'm starting to think that you really meant this to be, for lack of a better term, the "non-verbal 'low-functioning' autism thread." Sorry that it took me a while to read between the lines; we Aspies are famous for being deficient in that area.

I don't really consider this my thread, and had no goal in mind starting it other than for people to share their thoughts and ideas related to autism. Everyone is welcome to participate.

Maybe I am the one deficient in reading between the lines. Do you feel like I'm minimizing your fears and concerns by comparing them to mine? If so, I'm sorry. I really do believe that most kids here have great potential and will eventually do OK in life and was trying to be encouraging though. Especially since you mentioned feeling guilty about passing on your genes.

But am I just coming across as bitter and jealous? Trying to one up everybody with how bad things are? Is my own pervasive negativity and worry a big drag? Do I just need to shut up and focus on the positive? Not compare my child to others? I guess I sound like a broken record talking about the same type of stuff over and over again. And what good does it do anyway? I guess I should see a therapist instead of just venting repeatedly on this forum.

gewy... I don't blame you for venting or being down. You've got it rough. With my last post I was trying to display one of my son's delays in a bit more of a humorous light, and your response was a bit... "You think you have it rough!" I don't know how to describe that better. I don't fault you for feeling that way, I probably would in your shoes. But I think you're right in that you definitely need some therapy of your own in this matter. I really don't know how you guys push through it.

Autism isn't the worst thing you can pass off to your offspring. My oldest boy is gluten-intolerant, severely allergic to peanuts, and with the allergy meds he got put on today (because his eyes were nearly swelling shut with unknown triggers), I'm pretty sure he got my wife's family's immune system. Which scares the sh*t out of me, given that her little sister died a few years back of MDS, her older sister behcet's disease (blood vessels swell for any number of reasons), and just about everyone else in her family (those that didn't kill themselves) died of cancer. Tristan is autistic, and that's very likely from my genetics. I won't agree to have a third child, partly for genetic reasons (on both sides), partly for career and family goals. I'm not home much as it is, which leaves my wife to do most of the stuff with our kids. I would say I don't think we can handle it, but it really comes down to I don't know if I can handle it. I'm pretty sure my type A personality wife would take it in stride. I've been home more lately, being on the project I'm on, and honestly it's made me realize just how much I suck as a parent. It's just something I haven't had much experience with, because I work such long hours. But I think I can improve, and I'm trying.

Overall, especially since he's been in MINC-P, I think Tristan's making good improvements. You're absolutely right, I do believe in the long run he'll be just fine. I don't know if he'll ever be truly on his own, but then again I have an older brother who's still living with our mother at age 35, because of generally stupid decisions made for the past 17+ years. Could the same be said of your son? I seriously doubt it. I certainly wouldn't wager on it. And while I feel bad for saying that, it's not meant to hurt you in any way, I'm only saying it to be honest about it. Your son has more than just ASD, he's severely handicapped. I think all you can do is to try to keep him healthy, and as happy as you can, whether he knows what's going on or not. One day he might develop some kind of system of talking to you, that you can work with. He may never get there. I think you should assume the worst, but try not to lose hope that things can get better.

From the perspective of a lurker who's used this thread to gain a much deeper appreciation of the struggles you've all been facing, that came across as a pretty low blow Dee Most likely born of similar (completely understandable) frustrations, but still...

I agree that this should stay a safe place to vent (or brag, even) without ruffling any feathers. Sometimes just having somewhere you can "tell your story" can make a difference in keeping some shred of sanity.

Trying to shoulder it alone can break even the strongest.

I hate to play the mini-mod, but can we please all just settle down? This thread is about support and sharing our trials, it's not about who has it the worst.

Gewy, I beg you, please do not leap to conclusions, no one said your son was a damaging trope. The problem with the media is that they have and protect a very narrow view of what autism is and what autistic individuals are like. That's it, nothing more, nothing less. Need I remind you that autism is a spectrum, there are so many different people on it, from all walks of life, with a bunch of different personalities, but a few distinctive traits. And the issue is that the media (not just games, but movies as well, as the article points out) systematically projects a very limited image of what autism is like.
As for your son... I get it, I really do. I also have a tendency to do that, look at other kids, neurotypicals or even kids in this thread and say to myself "you think you have it bad?!?" It's so easy to focus on all the things they don't do, the skills they lack. But you have to shift your perspective and focus on what he *does* do. My son always complains about our son being non verbal, and how he would love to hear him say "I love you, Daddy" some day. Instead, I try to see all the little ways in which he does show his love, like when he smiles or hugs or tries to do a very sloppy version of a kiss. And it might be something totally different for you, you might have to look for it. But in all likelihood, there's something there, no matter how small.
It might be difficult to see, because it's a tiny thing, but perhaps also, and I hope I'm not overstepping my bounds, because there's a very good chance you are depressed. And no matter how hard you try, depression is hard to break free of, and will not let you do that (ie focus on the good things). I'm a very big advocate of self care, particularly because if we parents don't take care of ourselves, there's no way we can take good care of our little ones, special or no. Depressed or not, we need help, and there's no shame in therapy or medication or respite care if that's something we need to lean on.

Dee, I understand your concerns and frustrations, truly I do, since I'm in a position all too similar to yours. Unfortunately, there's little you can do about your genes. They are what they are, with their strengths and weakness, and there's not a damn thing you can do to change that. All you can do is try and help him as best you can, whether he is on the spectrum or not, and wherever he may be on it if he is. At this stage, it's too early to tell, right? And you got him into early intervention, right? You're doing the best you can with what you have, and that's all anyone can ask. Yours seems a little ahead of mine at the same age, but if I may be so bold, try not to ask him questions. Keep it simple, make sure he looks at you then the glass of juice, and then hand it to him saying "juice". That'll keep the different words straight. That's what I've been taught by our ABA specialist, anyhow, maybe the professionals you're working with will have different pointers.
And I get being a proponent of neurodiversity, but being neurodiverse doesn't exactly make life easier for you. I get it, I also wish my kids were neurotypicals, but there it is. There isn't a damn thing you can do about it. They are what they are, and you're trying to be the best mom you can.
I know you were a bit anxious and uneasy at the prospect of another child, and only you and Absurd can really know and decide where to go from here. Only you know what's best for you and your family. Sending you tons of positive thoughts and vibes, and you know where to find me if you want to talk.

PurEvil, thanks for sharing the dick, I mean stick story. That definitely brought a smile to my face.

As for me. Well, same old, same old. Mostly. Kinda. I'm still trying to get government help and services for my eldest. As it is, he's costing us 6k€ a month, which is quite a financial burden. My husband wants us to stop working with the home daycare (the woman who runs it has ABA training and asks extra which is why we shell out 4.5k€ for her alone in between salary and labor costs). And he's happy there, he likes it, but he was supposed to be the only kid there in the mornings, and yet there's another kid sometimes. And my contract ends on May 31st. My husband wanted me to take up the mantle and stay at home to take care of him, at least until October. Which terrifies me to no end, because I don't know that I'm the best person to take care Matt, being on the spectrum myself, and finding it all too easy to just let him do his thing and really "work" with him. I need to work. I've just finished med school last year which just about took me 14 years, I'm just starting out, and if I stop now, I'll only have 6 months working as an attending, and my CV will be about the same as others who will finish their residency in November. It's all the more distressing since I'm fairly certain I'm about to land a new job offer (I have an interview next week and they seem *very* eager). It all hinges on how much they'll offer to pay me and when they'll ask me to start...
And I'm also concerned about my second child. He's become more withdrawn, more cranky, he's changing. He's only 13 months, but he doesn't hold out his arms when he wants to be held, he doesn't answer to his name, and eye contact is lacking compared to the other kids in the day care. Maybe I'm imagining things, but my husband is concerned too, and I'll be taking him in for early evaluation in a couple of weeks. I hope I'm wrong. May Matt forgive me, but I hope I'm wrong.

Time to drive this thread away from the awkwardness...


PurEvil wrote:

Time to drive this thread away from the awkwardness...


That reminds me. Last year at the Marshfield fair my daughter shocked my wife and me by asking to ride a kiddie roller coaster. She's been asking about doing it again now that the weather is getting nicer. She even suggested she might like to ride a pony (my son rode one last year, and proudly announced "now I am a cowboy" afterward) which she was afraid to do last year.

This year we'll be getting the unlimited rides bracelets.

We get season's passes to Kings Dominion every year, which was where this was taken. Tristan does ok for the most part, but he's not great about standing in lines waiting his turn.

I think he'll likely turn out like me. I calm down and relax on rollercoasters. Its just comforting, and he's pretty much fearless.


I was just hoping you were wrong.

Edit: Read that as, "I really didn't know how the respond to it without further information." Honestly, at 13 months it could really just be a phase, or him not feeling well. I'd at least give it a few more months. We were worried we were jumping the gun at 18 months, and I don't think most doctors really like giving any kind of diagnosis before age 2, if not age 3. At least that's been my impression of the doctor's we've seen.

DC Malleus wrote:

From the perspective of a lurker who's used this thread to gain a much deeper appreciation of the struggles you've all been facing, that came across as a pretty low blow Dee Most likely born of similar (completely understandable) frustrations, but still...

I sincerely apologize for raining on gewy's pity party. I now understand that while invalidating someone else's concerns is not a low blow, calling someone out on said invalidation is.

I mean, from what I'm seeing, it's okay for my feathers to be ruffled.

If anyone can instruct me on how to get threads off my "tracked" page, I'd really appreciate it, as I didn't mean to even click on the thread in the first place, because anything else I say will be an even lower blow than anything else I've ever said previously.

The button to remove from favorites is on the original post.

*ducks his head in* Threads can't be removed from the tracked section. It's a list of threads you've made a post in. You can manually curate your own list of threads by using the favorites section, and the 'add to' buttons found in each thread's first post.

I can't fault you for it, Dee, but I wish you wouldn't go. This thread should be a safe haven for all, whether autistic individuals, or parents of kids on the spectrum.

And thank you, PurEvil, truly. As it is, though, he's been like this for at least six weeks. The "he's not feeling well" rationale might've work a month ago when he had his major bug flu which left him dehydrated and I had to take him in for IV fluids, but no longer. I've had my doubts for about two months, but now I'm certain. And my husband, who has always been the skeptical one, the one who wouldn't believe me when I came to him with my concerns about our eldest, he's fairly certain of it too. Believe me, I'd love to be wrong, and if they do tell me otherwise in two weeks, I'll be glad of it. But as it is, I'm not hoping anymore. Hoping would be just setting myself for disappointment. There are just too many red flags.

I guess the benefit there is that (at least I think) the earlier you begin early intervention strategies, the better the outlook tends to be. Like I said, we didn't really push our concerns until Tristan was about 18 months, and it was more due to the gap in development between Tristan at the time, and Sabastian when he was that age. I don't think we started any actual therapy until he was closer to 2 years old. We didn't know much about autism until I started looking it up, we just knew something wasn't going the way it should.

So if that's the way things are leaning for his development, at least you'll be jumping on it incredibly early. At least it doesn't hurt to begin using strategies now, it's not like we're talking drugs or anything, mostly just different styles of education and therapies.

For whatever it's worth, I wasn't trying to invalidate anyone's fears, but to provide some hope and reassurance.

I should have provided more context I guess. For about two years, after my son was diagnosed, I spent a lot of time seeking out stories of similar children, trying to get an idea of what was in store for my son and what we should be doing to help him. I read a lot of accounts online and in books of kids with delays that sound very much like most of the children here. It seemed like for the most part, they did make progress and develop and learn and I really believe in the long run, many if not most will lead satisfying, rewarding lives, despite their struggles.

Honestly, I would absolutely LOVE if someone who has any knowledge of child development or autism (not my in-laws for example- they're clueless) could tell me the same thing about my son: that they really think he'll be OK in the long run. So I guess it's very surprising to me this would be taken in a negative way.

That response left me feeling more alone and isolated than ever to be honest. But enough of that. I'm over it. I'll cut down on my pity party going forward, because it doesn't do any good and nobody likes a pity party, so I hope we can just move forward in this thread.

I've been wanting to post, but partly I've been really busy, and partly I just haven't known what to say. I would really like for you to stick around, Dee. And gewy, I do appreciate your thoughts about our children. Here is mine for your son: he knows you love him, and loves you just as much back, however he shows it. He really needs you and your wife to protect him and raise him well, just as all our children need from us as their parents. This thread should be a safe place for all of us to share.

Eleima, I love your words. I hope you can get more than adequate support for your children. I think I'm in a similar position as you, with my daughter's delays. It's really easy to see yourself as being responsible for your children's disabilities (and I definitely know where you're coming from). For me, it's not me or my husband being on the spectrum. Rather, these are the thoughts: were we really too old to have children? Is this the result of two neurotics having children? And so on. PS: Your husband brought up the idea of full-time parental support, so let him do it.

We got a couple of Road ID's for my son: one on a wrist strap and another for his shoe. He is enamored with them, because they have his name on them. He actually asked to get a haircut last weekend, and for the first time did not scream and cry through it. We have no idea what happened to change his attitude. Something funny: he kept asking for a haircut because his "hair is CRAY-ZEE!" I had no idea he cared about his appearance.

Very true, PurEvil, and it's already what we've started to do, implementing techniques we've picked up for our eldest (using his name only for "pleasant" things, working on social games, and eye contact, echoing back the sounds and syllables he makes, that sort of thing). Wait and see now. We're doing the best we can with what we have, that's all anyone can ask.

Gewy, I don't think you need to cut down on your own venting, for what it's worth. We all have our burdens, and unloading a bit of them here fits the purpose of the this thread, I feel.

Concentric, great news about Alex taking well to the IDs and the haircut, that's really good to hear. I suppose it won't alleviate any of your concerns and fears, but maybe just a bit? I'm guessing you're still in hyper vigilant mode after his last escapade, though. And thank you for saying you love my words. I do try to put a lot of thought into them, at least most of the time and particularly in "important" threads like this one. And I know what you mean about seeing ourselves as responsible, I struggle with the same questions, since I'm on the spectrum myself, and my husband was 38 and 40 when our kids were born (I was "only" 28 and 30). As it is, though... I try not to dwell on it though, because there's nothing to be done about it now.
As for full-time parental support, my husband isn't too keen on it either, and he's already done it from November to February, and he's filling in for a maternity leave until September. I'm holding out until Wednesday when I have a job interview, but if they aren't offering sufficient pay, I guess that'll be the end of that discussion. Wait and see...

We have yet to take Owen to the dentist, mostly out of total fear of the experience on our end (selfish I know). His dental hygeine hasn't been the best, but he is finally good with letting us brush his teeth.
Unfortunately I'm sure he has some cavities, and one looks quite bad.

We are going to a pediatric dentist that our pediatrician recommended, but I'm sure they are going to have to put the poor little guy out.

We know we do such a good job with Owen, but on this end I feel like we've failed him a bit.

Oh, teeth. This has actually become one of my biggest problems after I became more symptomatic again. I've tried to desensitize more, and I think I've tried every kind of toothbrush on the market, but I think I just need to start seeing my dad's sedation dentist instead.

It's not a failure to have to get put under, though... think of all the stress you'll be saving his little system from! Not being able to lower his sensitivity "enough" isn't a mark of insufficient therapy by any stretch.

Eleima, I didn't realize your husband had already done the full-time at home parenting for a while. I really hope you can figure something out. I am very fortunate that my job is flexible enough to allow me to take my son to appointment. Not everyone has that luxury. Fingers crossed for you - I get the feeling that you'd really like to continue working.

El-Producto, I also don't think it's a failure that your son might need to be put under for dental treatment. clover's right - the less stress the better. I think it is a very big deal that he now lets you brush his teeth. And some people (like me) are just more prone to cavities, etc., than others (like my husband, who finally got a checkup last summer after going 10 years without one, and no decay).

I was really commenting on the fact we weren't more aggressive with his dental care, there are just some times you don't want to battle over everything.

We'll see how it goes.. he'll probably surprise us all and be totally fine... he has a habit of doing that

That's totally understandable. Hopefully all goes well, whatever way you decide to do the dentist-ing.

Right there with you, El P. We haven't been very aggressive with dental care (pick your battles and all that), and getting him to brush is tough. I think they'll have to put him under the day we do take him. And if he's like me... Concentric, I'm just like you, I brush two-three times a day, and I still get cavities, whereas my sister who'd be a bit more lax about it when we were young teens, would get off scot-free. I'd rather have him put under than have to strap him down kicking and screaming, which is what we'd have to do, that's for damn sure.
And yeah, you're right on, Concentric, I really need to keep working. Taking care of the kids full time... Ugh, I don't think I could do it. Last week, I was alone with both of them, and they were crying for whatever reason (number two was hungry, number was... I don't even know), and I had a bit of a "I can't take it anymore" moment, and, ahem, tipped over a chair. Worse, most heartbreaking part was my eldest coming over to right it. Yeah, as stressful as my job can get with all the people skills involved, I need a change of pace.

Dentist went much better than expected. Owen was quite happy to show the dentist his teeth.
They definitely agree that he probably has a few cavities, and will need sedation in order to get proper xrays and fillings done. This will happen in May, the dentist and his staff were excellent.

Glad things went better than expected, El Producto.

"Smells like 'Victory!'"

Owen went to his Junior Kindergarten class for an afternoon to check it out. He did amazingly well.

When we first arrived, he looked overwhelmed as anyone would be walking into a class of 20+, 4 year olds. Organized chaos is the best way to describe it. They had 2 Educational Assistants in the class, one was working with another boy who had autism. He was clearly high functioning as his speech was quite good, and he took right to Owen. It seems that when the class gathers for circle time, etc. and the special needs kids don't/can't participate the EA works with the child. This was a huge relief, as Owen doesn't generally do well with circle time type activities.

He was immediately the hit of the class, everyone wanted to play with him. He did really well interacting and playing with kids he had never met. He helped clean up the classroom when the teacher told them too, and went out to recess with the class where he proceeded to play happily. He didn't want to leave.

I feel so much better about him going to school in September. He had a great time, and didn't seem to withdraw at all which is his usual behavior when he becomes overwhelmed/overstimulated.

It's heartwarming to see kids this age, because they don't care if a kid is different.

Thoughts about this?

I think it's pretty rotten that getting something to eat that's hot requires a first-class ticket.