This is very intriguing. My wife and I will have some big changes coming in about two years. We have had wonderful home-based care where we are and we send our son to a superb, state-subsidized nursery school. But the bottom will fall out under us when he hits kindergarten. This could be a real possibility.
We moved to C’bus for my Jr year in HS and I stayed there for 35 years (with some excursions). Do other cities love their sports teams like they love the Buckeyes?
Another school I am looking at is the Monarch School in Houston.
I don’t know if it’s available in every state, but if services are more of an issue than income, there are also pooled excess-income trusts which do pay rent (or even mortgage payments) but preserve Medicaid eligibility.
Wow. That’s powerful. I can’t even imagine. You have my respect.
How did the doctor visit go?
For what it’s worth, I really liked this article my friend posted (her sons are autistic). Not meant to minimize your concerns or shush away your distress, but it is a little bright spot. I’m glad that being different doesn’t seem to bother him!
Welcome to the club! It’s full of good people that didn’t actually want to join, but overall it’s a prettyspeical club.
Being mainstreamed na regular classroom is HUGE. It shows a lot positive signs. The more you can mainstream ther the virtuous flywheelstarts spinning.
Feel free to reach out in a forum or PM.You diefinately go though some rough days. I still don’t ven know how to explain it to stranger or acquaintances. I have a daughter on the spectrum, her twin is neurotypical…
One question: does your son have sleep issues"? China bambina has terrible sleep issues that were made manageable by a real mind hypertension drug. That kept our family from falling apart.
I hate to say this. Buy you and your hubby need to come to terms with have a child on the sprecturm in your house. Something like 80% of parents with special needs childs divorce
hang in there
He’s been in our house for six whole (mostly delightful) years now, and MrWhatsit and I are fine. My stress mostly comes from worrying about my kid’s future and not from any real problems he’s causing us right now in the moment. I mean, I’m sure his teachers wish that his behavioral issues were more under control, but he’s really doing pretty well, all things considered.
His appointment yesterday was… long. I spent most of it in the waiting room reading autism books while he was being evaluated by the team. Last week was the official diagnosis and this week was developmental/IQ/motor testing. I won’t know what the results were until they call us with therapy recommendations in a month or so. My guess is that they will recommend him for additional speech services at a minimum, and probably social therapy as well. We’ll see. Academically he is probably okay. The school district tested him at an IQ of 130 (which, I don’t even understand how this happened - I guess he must have had someone sitting next to him helping him stay focused on the test; or it was administered to him one-on-one) which hilariously means that he qualifies for gifted services on top of everything else that is happening.
I wish sometimes that I could just look in at what is happening in his little brain.
True dat!
Sometimes I forget that there is an amazing person locked inside that can’t communicate very well.
I worry about the future. Sign up for State services as soon as possible. At least in Washing ton state there is a years long waitlist.
Depending on how your child is at adulthood, as I understand quite a few go onto social security disability at 18.
I found the Children’s hospital autism center to be a lot of help.
Does you son have sleep issues? ~10% of kids on the spectrum (it took me a while to learn to say that comfortably versus neurotypical) have SEVERE sleep issues. You’ll know if it’s Severe. Childrens hospital sleep clinic saved my family.
My employer has the best insurance coverage in corporate America. We do intensive 1:1 ABA therapy almost every day. That has really helped China Bambina.
David Mitchell nailed it explaining what it’s like as a father on learning and then dealing with his son’s autism. David Mitchell: learning to live with my son's autism | Autism | The Guardian
Now that you know, you may start noticing spectrum kids a lot. At least it worked that way for me. I had been oblivious but that has sure changed.
Thank you so much for bringing up this show. I don’t have a tv so I rarely learn about shows like this, but I took in the entire first season in one day yesterday. I was a little disappointed in how easy it was for the parents to get services (not to mention a behavior “aid” who came in for several hours every day!) and find a great school they could afford. I am just shocked at how much that little boy resembles my daughter in behavior. Some of the plot lines could have come from my own family’s life since we got the diagnosis. I love how they make the character so high functioning, so that many outsiders don’t really recognize that the child has autism.
I wanted to chime in that I’m in a very similar situation. I have a 6yo with autism. He’s considered “high-functioning” because he can read and talk well, and has at least an average IQ, but the social challenges are still huge.
Ohio is a good state for autism, because we have the autism scholarship - any child with an autism diagnosis can receive $20,000 per year of autism services if they decline public school. Basically, private schools or therapies are better for many kids on the spectrum (not all!), and this allows more people to afford it. It’s working well for my child so far. We also have county funding for some other therapies (speech and OT) that insurance doesn’t cover. Unfortunately, our insurance, which is good otherwise, doesn’t cover autism. Some companies choose to offer insurance that covers it, many don’t. Some states mandate it for certain plans (but not plans given by a large employer - those only have to follow the national laws, which do not mandate autism coverage).
I know there’s a TON of skepticism about this end of things, but anecdotally we’ve seen huge, huge improvements with a gluten free diet (medically indicated by a genetic test) and with some vitamin and other supplements. I won’t go into it too deeply because I know a lot of people on here are very reluctant to the whole idea, but it’s been more helpful than I can even say. We have a great medical doctor who is supportive and actually pointed us to a lot of things we didn’t know about before. PM me for more info.
He is also on a low-dose medication for his anxiety that helps a lot. We tried a few meds before this one that really seemed wrong, they made him too tired or just…different. This one seems to work. There isn’t medication for autism per se, but if there is depression, anxiety, ADHD, or other things in the mix, it can help with those symptoms.
I can’t help at all with the adulthood issues, I need to look into that myself.
Let me first say, I don’t have kids and I don’t have any scientific basis for what I am about to say, its all anecdotal, but here it is.
My nephew is 14, and has asperger’s syndrome (I know I botched the spelling, sorry). He lives in the Dallas area (Plano).
He has a really really hard time when it gets hot outside. He can’t focus, he can’t interact with people very well, and his symptoms (if you call them that) get more intense as the heat ratchets up. When he stayed with me I just kept the house set on 60 degrees and he did better in school and with focus and everything, understanding facial recognition, etc… I don’t know how far down asperger’s syndrome goes before it goes to Autism, but my nephew probably won’t ever live on his own, and cannot understand most of what is spoken to him that doesn’t have anything to do with what he is talking about. But if he is reading it its completely different. Those symptoms really subside if its nice and cool outside.
Its really damn hot in Houston. It may not be as hot temperature as when I lived in Dallas, but the humidity is brutal, and the heat indexes regularly climb to 110+. I don’t know if that is a consideration for you guys or not, but that is a big one.
My nephew is the only person I know that is on the Autism spectrum so I don’t know if that translates to all people or not. It is just something that affects HIM. A LOT.
Anyways, hang in there MsWhatsIt. We were so damn scared at first but he is my favorite guy in the world. Sending you some love.
I have calmed down a lot since I initially posted this thread. I didn’t think that getting a real diagnosis would be such a shock, but it kind of was.
I feel a little weird about living in a place with such fantastic private schooling options for autistic kids and declining to use any of them, but my kid just seems to be doing so well in his public school that I can’t imagine pulling him out. I think he’s benefiting from being around the other “regular” kids on a daily basis, too. We may well end up enrolling him in private speech therapy or other therapies, though. We’re waiting to hear back from the autism center about their recommendations, which could be a few weeks.
This whole thing has been a little bit of a roller coaster, emotionally. Whatsit the Youngest, of course, is blithely unaware of any of it and is cruising along happily through his days. Biggest news from his life in the last couple of days: He defeated a new level on Plants vs. Zombies, and he has a loose tooth.
You’re reaction seems par for course. Certainly we knew China Bambina had special needs, spent about 4 months getting the official diagnosis once we moved back to the US, and the actual diagnosis was still pretty overwhelming when it came.
If your son is mainstreaming, I would encourage you to stick with that and then investigate ABA therapy or speech or physio depending on his situation. Mainstreaming is really helpful. It’s a huge breakthrough for China Bambina that she is mainstreaming in one class per day now in the 3rd grade. She models what is around her, and a mainstream class is much better than a special needs class.
I’ve heard that a lot of spectrum kids get challenged in middle school or high school because these are often much bigger schools and they end up in classes with kids they didn’t grow up with. Kids that grow up together in the same school seem to be accepting of spectrum kids much more easily. But it is one day at a time and that’s a challenge you may not even face down the road.
My kid is mainstreamed, and I was quite happy with that in earlier grades. He is now in the fifth grade though, and with 18:1 or so student-teacher ratio, academically that time in class when the teacher is in front of the class is completely lost for him. He just turns off - daydreams or something. On one hand I know the kids are very tolerant (I have never heard of any bullying) but he is yet to be invited to any birthday party this school year.
The attraction of “special” schools like Monarch in Houston or Haughland in Columbus, is that the student-teacher is much much lower (3:1 or so) and the instruction is individualized. I think he would academically do much better in such an environment.
Yes, we are struggling with the mainstreaming idea right now. My public school district offers an autism class where there is a special ed teacher and special classroom, but the kids are sent to mainstream classrooms (with an aide, in many cases, including my sons) for a part of the day. It really does sound good.
However, he’s currently in a private program with 6 kids and 2 teachers, and his excellent speech and occupational therapies are right there. They are so good with him, and can offer such specialization that we haven’t moved him. Despite looking closely at our public school option.
It’s such a hard decision, the struggle in our case is that academically I’m not sure his current program will meet his needs going forward (he’s very academically advanced). But I don’t really feel comfortable with the behavioral supports or ability to help him socially in the public school. So it’s tough and if you’re happy with your current school, then there’s no need to switch. I would certainly get supplemental therapy, if he needs it even a little bit.
Odd, here I am hoping that one day China Bambina can mainstream. Her public school special needs class lumps together students from different grades and levels. Last year, she was a second grader in a class of first and second grades. That wasn’t so good. She picks up on some bad behavior and practices of those around her.
Now she is in the higher functioning 3-5th grades, and mainstream science and art with 4th graders. It’s better role modeling.
deweyDecibel, sounds like you have quite a good set up. I don’t think I’d move my child in such a situation…
MrsWhatsit, this piece by Irish author David Mitchellmight be interesting for you. I think it may resonate even more with with MrWhatsit. David Mitchell is married to a Japanese woman, they have an autistic son, and together they translated “The Reason I Jump” by an autistic Japanese boy Naoki Higashida.
At least for me, David Mitchell really nailed the experience of a father coming to terms (for lack of a better word) with his child’s autism in the Guardian piece.