Shell shocked
I feel shell shocked although I really shouldn't.
I took my youngest son (DS-2.5) to a screening for an integrated classroom setting of 16 kids (2 teachers, assistants, etc.) and I so thought he would do well. I was hoping he would attend an ICT class for next year, but he had a total shut down, and was stimming in ways I haven't seen before. He could not be redirected, he was walking around tapping at his chest, he would run away and bury his head in a chair and could not participate in the activities with the other kids. He could not make very good eye contact, parallel played instead of interacting with the other children, would fall on the floor and refuse to get up or participate, but most of the time was more interested in focusing on the toys on the perimeter of the classroom to tune everyone out, and would not abide instructions to participate with the other students, no matter how much I or the teachers prompted him. He often ran away to a quieter part of the classroom and self isolated. On the way to the school on the subway he was very well behaved, sitting next to me and having a nice rapport. On the way home, however, he was a different child. He was flicking his fingers (never saw him do that before) and would not answer questions appropriately (would respond with out of context replies, saying names of subway trains instead, which were not even in view), and would body slam/jump on me while I was sitting down and intermittently poke at his eyes. The social worker who observed him said he was overstimulated and problems seemed to stem from extreme sensory overload. I witnessed this extreme reaction a couple of years ago when I took him and his older brother to a birthday party and he demanded to be outside the party room in a quieter area because it was simply too much for him. I thought he had outgrown this, given he has been able to attend the classes at Gymboree and be in crowds while traveling, so I'm quite disconcerted. Even his ABA therapist is in shock when I told her about what happened. Well, he didn't get accepted into that school, as he did not meet the minimum threshold for behavior. They said we'd love to have you but try again next year after he gets more therapy. It was discussed and decided to reschedule a similar tour/screening at a different school to see if his reaction is the same, at which point I will know he will need a smaller class and more restrictive environment rather than an integrated setting. When I asked him if he liked the school, he told me enthusiastically "YES!"---????? In the meantime I have put in a request to get him sessions at a sensory gym, stat. I'm still reeling.
I agree, it takes time to acclimate to a new environment. At that age, it would have taken me a couple of weeks (maybe more) to start to feel at home, although TBH, I was never any good at participating in group activities.
To me 16 children is too many for a 2.5 year old with ASD.
Many classes for typically developing children that age are 16-20.
I would be really worried about the noise and commotion and demands such an environment would place on my child and though I understand you are disappointed, maybe this is for the best. If your child's behavior changes negatively so much, yes, he sounds quite overstimulated and will be more able to learn if he has an environment that does not overstimulate him. And that's what you want, for him to learn.
I guess it is my own fault for having such expectations. This happened with my older son as well. He had done so great in Early Intervention that we mainstreamed him. And he held his own for a while, until he couldn't any longer and decompensated, and that's when I got called in for a meeting at his preschool to push for more support services. In both instances I was lulled into complacency by the affirmations of his therapists that my kids were doing so great, that they probably lost their ASD diagnosis. And because my younger son presents so differently, I was really thrown off because most times he seems so related and engaged with people that I really thought the Early Intervention got him to the point of nearly being mainstreamed. In fact, I was at the point thinking that maybe he wouldn't even need an integrated classroom and could certainly be mainstreamed. Boy did I get a rude awakening. I now again find myself in this limbo wondering where he's really at and what is going to be the best learning environment for him. I really thought I had it all down pat. I am now seeing that I am totally clueless about my kid. It's a very, very disconcerting feeling to be so wrong, and by so many degrees of wrong!
The weirdest things can set off a young child and the unfortunate thing is that he probably cannot tell you yet. It could have been the color of the building, the smell of the flowers outside, the physical layout of the room or building, the feel of the carpet, the smell on the disinfectant on the toys, the decoration of the walls, or ....
It may not mean that he isn't ready, but just that this particular place is not right for him.
I remember taking my son out for pizza one night. He loved restaurants and he loved going out. But two steps into the door and I felt his hand tighten on mine and everything in him go rigid. It was this one place. He said it was noisy, but I don't think was really as simple as that. There was more to it. But I learned that we could usually tell quickly - he would react and hesitate almost immediately going into a place that was a sensory overload for him.
If your child is like mine, this is all going to get worse before it gets better. Be prepared for that. You are going to have to let him guide you. Maybe you will see patterns in it all and maybe you won't, but often you'll see him react almost right away, very subtly at first, but look for it.
Personally, I think you honor it. I don't know if outgrow is the right word for how kids develop on the issue of sensory overload, but it does eventually become almost a non-issue. Or, at least, it has for us. I'd say somewhere around the time my son left elementary school was when I realized we were on the other side of it. You go through life aware that some places just "get" to your child and you look for it every time you go somewhere new. And you walk out, turn around, when you have to. Check out every classroom with him before he gets permanently enrolled.
We can now go to that same restaurant without a single hesitation, by the way.
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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).
You aren't clueless. You let yourself believe because it was easier that way. I've done that more times than I count. Sometimes I just don't have the energy left to imagine it won't all work out perfectly. And then life throws it back in your face. Oh I've so been there.
Face it, all this is going to be a "now," "today," "get through this" process.
Personally, I don't think you need to know exactly where he is at, you just need to be aware of what he needs, and do your best to meet it. You will be observing and learning about your child intensely for the next decade. And you will figure things out and find large periods of peace.
If your son is ASD, he will always be ASD. Any therapist trying to make you feel better by suggesting your child has probably lost his ASD diagnosis is doing you a disservice. Or they don't know what they are talking about. But I'd prefer to think they say it because they think that is what you desperately want to hear, and are trying to help you stay positive. An ASD child can make amazing progress and can learn to present NT, but he will always be ASD. You don't change how a brain is wired. As new situations come into your child's life and he has to face new challenges, this is going to become more apparent to you than ever. When my son was 7, I agreed with his diagnosis but didn't think he was all that ASD. But the time he was 12, I KNEW he was 100% ASD and it would be obvious to anyone who had a 30 minute conversation with him and knew anything at all about ASD. He picks out the other ASD kids in his school without anyone telling him.
But I don't think you should give up on being able to mainstream your child because he did not like this one classroom. As I posted before, HUNDREDS of variables come into play, and until you have a better handle on which ones are triggers with your son, you won't know that he can't function in any mainstream classroom, you only know that he can't function in THAT one.
My son has been mainstreamed his entire education and is now completely off IEP or services. He is friends with another child that went off IEP at about the same age, and will be off to college on his own next year. Things change. Kids develop. No one knows what the future holds for their 2.5 year old; no one. We have to discover it all with them.
Anyway, best of luck. Everything you are doing will pay off someday somehow. I can't tell you what your result will look like, just that what you invest is worth it, and your set backs will never be the most important part of the story. Believe in yourself. There is no perfect. Just good enough.
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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).
I'll reiterate what DW_a_mom says. You are learning just as your child is learning, and probably at the same pace about the same things. You and he, don't know what the trigers are or how they will express themselves. It's a tactile learning experience for both of you.
A book by Olga Bogdashina called "Sensory Perceptual Issues in Autism: Different Sensory Experiences" would be a big aid to your understanding about sensory issues. I've read the book and am happy to recommend it.
I am confused as to the age of this child and the amount of time you have worked with him. Is he two and a half years old? And did you take him to a party a couple of years ago... meaning 6 months old... where he demanded quiet? And at age 2 1/2 you think he has outgrown sensory issues because he does well at gym classes and in crowds while traveling?
What strikes me is, you probably have a fabulous kid on your hands. He probably has absolutely astounding qualities.... but you are missing them. Instead you are focused on integrating him or mainstreaming him in a real hurry. That he "failed" this test means nothing. Sensory issues become a lesser issue over time (not just a few months). In the meantime, get to know your little guy. Sensory issues may not have been the real problem. He probably was just uncomfortable with the new situation. There is no shame in not attending school at age 2 1/2. Attend to his strengths. Get to know him. Build your relationship. Ease him into things.
My guy wasn't dxd until age almost 9, but we always knew he was different. The advantage to that was that "experts weren't telling us stuff. We were learning about him.... FROM HIM! So we knew well enough to put him into preschool gradually - not as a test! We let him come to the school and meet the teacher with just family. He played in the classroom with his sister while I spoke with the teacher. I had playdates with the other students. I don't remember what else, but you get the picture. You want to know more about ASD and your son than the professionals do. Let them work with him, but you should know enough to direct them. You might have anticipated this reaction and never let him be tested this way.
I'm sorry to seem harsh because I know how terribly frustrating it is to understand a child!! ! ASD is terribly confusing. But the reality is that professionals will never understand him as much as you. Be patient with yourself, but do take the time to observe him in all kinds of settings. You must be doing this already if you are traveling with him and taking him to gym classes. Libraries have story times, counties have tot classes, mom's groups have meet-ups, there are usually tons of opportunities similar to preschool you can take advantage of.
Just my opinion. There is probably something in this picture I don't know, because it doesn't make real sense to me. I know NT kids who spend the first month of preschool sitting under a table before they are acclimated. Give this poor guy a chance not a test.
My bad. My timing is all off having two kids, sigh. DS2.5 was probably just under 2yo when he went to that birthday party. It was before my older son's 5th birthday, so maybe 9 months ago. These birthdays all blend into each other after a while LOL They both refused to go into the room where it was dim but had loud music, lots of kids and flashing lights. My son would scream and cry, shaking and would be inconsolable until we left the party area.
I don't think it matters whether the people that encourage graduating from services and looking normal by school age are right, or whether the people that say you don't outgrow autism are right, in fact there is truth to both.
What matters is that you look at and celebrate your child for himself.
It sounds like people may have given you the impression the goal is to make your son look normal. I've heard that, too, about my daughter, and myself. Looking normal only goes so far. The pressure to conform becomes very overwhelming. There is a thread right now asking how often WP members think about suicide and 33% said daily!
I feel that providing acceptance and support from a young age can change that figure for our kids. I don't want my child wanting to die, and I do want my child to function well. Mostly she does extremely well. Sometimes, I get caught up in wanting more, wanting "normal". But that's not the way to think for too long.
I don't want my child, or yours, or anyone's to feel she, or he,isn't acceptable for being a bit different. Let your son be himself. It is not necessary to be mainstreamed at 2.5 for it to happen, plenty of kids get services until they enter school or into the primary years, many are out of services by elementary school, many more by middle school. If we push too soon, kids start having trouble, at a time there will be much less available to catch them. And if he were to continue to need services, you will love him no less. But the fact they considered an integrated classroom and he does well in calm settings seems to me to be a really great sign. That really is something to celebrate.
What matters is that you look at and celebrate your child for himself.
It sounds like people may have given you the impression the goal is to make your son look normal. I've heard that, too, about my daughter, and myself. Looking normal only goes so far. The pressure to conform becomes very overwhelming. There is a thread right now asking how often WP members think about suicide and 33% said daily!
I feel that providing acceptance and support from a young age can change that figure for our kids. I don't want my child wanting to die, and I do want my child to function well. Mostly she does extremely well. Sometimes, I get caught up in wanting more, wanting "normal". But that's not the way to think for too long.
I don't want my child, or yours, or anyone's to feel she, or he,isn't acceptable for being a bit different. Let your son be himself. It is not necessary to be mainstreamed at 2.5 for it to happen, plenty of kids get services until they enter school or into the primary years, many are out of services by elementary school, many more by middle school. If we push too soon, kids start having trouble, at a time there will be much less available to catch them. And if he were to continue to need services, you will love him no less. But the fact they considered an integrated classroom and he does well in calm settings seems to me to be a really great sign. That really is something to celebrate.
I guess I gave off the impression that I'm somehow unhappy about my child, which is totally not the case. He is my little sunshine, and he gives me so much joy regardless of what is happening in all this mess of a school system. I accept him no matter what. He is a cherub! I just feel like the rug has been pulled out from under my feet, is all. If my son needs therapies for the rest of his life I'm fine with that, it isn't even a concern. If he needs it, he needs it. There is no dispute, I will make sure he will get what he needs. I want him to be able to accomplish whatever it is he wants to find satisfaction with his life and be as self-actualized as he can be. My main gripe is being led to believe that he is further along in his development than he really is, and then have to backpedal so much. I have a hard time adjusting and reorienting. It really is me, not him!
Right, the constant adjustment and decision making is extremely difficult, but is the constant in the life of any parent of an ASD child. I don't know if we ever get used to that. No rest for the weary.
But also, don't get extreme in your thinking. It is possible he is just where you thought he is, and could have acclimated to that class just fine, if introduced gradually. That makes a night and day difference for my son when he is introduced to a new program. You just don't know yet what conclusions to draw from this experience. It probably doesn't mean he needs extensive therapies all his life, and it may not mean anything at all.
The hard thing is that you have to keep part of your brain in objectivity mode, always. It is emotionally draining b/c who does not want to think all is going swimmingly? It is easy to get misled by statements made by people who don't see the whole picture.
Some of it is that they want to show you evidence that they have helped your child, part of it is that they think "graduating" into clinically not significant territory is what you need to hear, part of it is that they don't see the whole picture.
Whenever an ASD child is functioning "well", even in multiple environments, but not others, you always have to figure out if it is because it has become routine or something that doesn't translate to all places. We have had our son function "well" in places you would not think an autistic child would be Ok with b/c of odd details regular people would never figure out. We had to figure out what was similar about those places that did not translate to "easier" locations. We still don't know everything, and his reactions to stimuli change. It is hard.
Even as my son adjusts to sensory stimuli, and it seems to translate to multiple places, there are just some environments he just will not tolerate. He can be upset by something as simple as not liking the font in a sign.
I agree that another place may be a better fit, for your child, but you won't know until you see. A smaller class might be better too, as was said before, too. Little kids are loose cannons of unpredictability and too many in one room can be an issue, especially if there is a lot of unstructured time when they crash into each other, and touch each other and you know...
You also have to keep in mind how well your child does with adults he does not know. Even if your kid ends up in a SPED environment, it is not the end of the world. Kids graduate from there into inclusion and mainstream, and at that age it is easy to do the academics at home, if needed.
Feeling sandbagged is the worst of it, though, I know.
I just wanted to say I really love you guys/gals. You just really know what I'm going through, and it means a whole lot!
My youngest son was Dx'd with mild PDD-NOS when he was quite young, like 17mos old. Early on, the concerning signs were his delayed speech, his obsessive/repetitive behaviors that would cause tantrums if we tried to redirect him, sensory issues, gross motor delays/clumsiness, hyposensitivites and inconsistent eye contact/not responding to his name consistently. I do believe that his relatedness has improved tremendously and in situations that are comfortable for him, people find him very engaging and sweet, and he exhibits great joint attention. It seems that only in overwhelming sensory circumstances he shuts down. But he is SO affectionate and his eye contact and speech has improved (aside from the occasional bouts of echolalia) so much in the last few months, nobody off the bat would ever suspect he is ASD. Even his "obsessions" have sort of calmed down a bit, well at least for the time being (he was obsessed with letters, numbers and the US map for a while, and prior to that, elevators and opening/closing doors continuously). I don't know if he would qualify as ASD if he were administered the ADOS, as he does have some reciprocal speech. It makes me wonder if he really ever had ASD to begin with or just some severe SPD. Or if it is just the magic of Early Intervention giving me a false sense of complacency of a muted ASD. Sigh.