Thank you all so much for the ideas/advice. I will look into everything mentioned and see what I can do for DS. He's been a little better since my last post, so hopefully he is coming out of it. I kept him home from school yesterday, but I sent him in today. He had an overall poor day, but he did not have any aggression, which I'll take at this point!
Now that he is 8 he might be old enough for CBT, I last checked over the summer when he was 7. I'll have to call around again. I do think part of the problem is the ASD diagnosis. People make a lot of assumptions about a kid on the spectrum (and as I've said in the past, I don't think I'll ever be 100% convinced he is on the spectrum). Half of the appointments I take DS to the docs speak to him like he has no language/intelligence. Because autism is on the chart. The idea that a kid on the spectrum could benefit from CBT is apparently entirely foreign to them. They are usually surprised he can even count. I'm not sure why his chart doesn't have his IQ on it. I have shared it with them. DS has actually expressed feeling very insulted by the way some doctors have treated him. Autism does not equal cognitive impairment.
Some of our trouble is that our regular insurance does not have mental health coverage, so we have to use MA for all such services and a very limited number of providers take it. We use the local children's hospital (which is top ranked in the nation) for most of the services we get, except for wraparound. We recently spent 6 months switching to a new wraparound provider in hopes of getting DS ABA therapy for the first time in his life, as well as getting him into their social skills group. Turns out now that we finally got all of the paperwork and pre-evaluations and who even knows what else done, DS is doing too well at school to qualify for school services and they aren't recommending ABA, which means insurance won't pay for it. Our private insurance won't cover ABA due to some loophole. This has been an ongoing issue for years and I don't think DS will ever get ABA. He has a friend who gets daily ABA at the company we switched to. This is why we switched. Unfortunately DS lost all other wraparound services in the interim and it looks like we still won't be getting the ABA. He and his friend are at very similar levels of functioning/IQ, but they have a private insurance that covers ABA.
And to top it all off, the social skills group, which sounded great on the website, is just a glorified daycare. DS needs to be in a calm environment to learn social skills, I'm looking for passing the conversation ball, staying on subject, asking follow up questions, etc. This was our 5th try at a social skills group and they have all been the same, a room full of kids running crazy and a few adults trying to get them to do crafts/follow a schedule. That is not the level DS is at! Not to mention the crying. Even I could not function in that environment!
All of the rest of our medical/mental health services are through the children's hospital. The pediatrician just refers us to specialists for everything... or ignores us. DS has severe eczema, but the dermatology department isn't even taking appointments. We've been to GI since he was little for reflux and later constipation, which got so bad it eventually led to pee accidents. He was only going twice a week and was all backed up. The only thing they recommend is more medication. I can't understand why a kid who eats so much fiber doesn't poop more. He once went over 2 weeks without a poo as a baby! And they don't seem at all concerned that it takes him half an hour to poo even though what comes out has never been formed at all. I don't really get to see it anymore, but when he was little it looked so weird and fluffy and usually had all sorts of food in it. I always brought it up to the docs. They asked if there was blood, I said no, they said it's fine. I expressed concerns he was not digesting his food well and I was worried about his nutrition, they said just give him a multivitamin if I'm worried. I had asked about a celiac test when he was maybe 2, but they said it's exceedingly rare in young children and didn't run the test.
He is rather small for his age, around 47 pounds and 47 inches. He is very thin (you can see his abs) and we have to work hard to increase the calorie count in everything he eats. The doctors want him to drink ensure, but he won't drink anything but water and absolutely hates dairy (other than cheese) or anything that has the texture of dairy. He is not a picky eater though. He eats tons of veggies and fruits, nuts and beans, meats and fish, and no sweets at all. He eats a lot more than other kids his age. I have no idea where he puts it!
He is allergic to eggs. The allergy center at the children's hospital initially refused to test him for the egg allergy because they said there is a 40% false positive rate. I refused to leave until they tested him as I knew he was allergic (he would break out in hives when exposed). It was positive, but they said it shows nothing due to the high false positive rate. They told me to give him eggs anyway as he was more likely to develop a worse reaction if we restricted them. We did continue to give him some eggs until we figured out that they were also the cause of his severe joint pain and eczema. He has not been tested for any other food allergy as they refuse to do screening tests for food allergies. DS was eczema free for a while after we eliminated eggs, but now it is back again and we can only keep it under control with prescription ointment twice a day. And it's still not fully controlled. I have considered doing an elimination diet, but DS eats so many foods I'm not sure where to start!
Since we moved a year and a half ago, we are now close to another children's hospital network and I am in the process of switching over to them. We have a dermatology appointment in March and if that goes well we are going with them for everything. The network we have been using is the same one that originally diagnosed him with ASD (dev peds) and refused to diagnose and treat his ADHD (hyperactivity is part of autism, so they would not diagnose clear ADHD) and said the only medication option they were willing to pursue after the 2 we had tried was risperdal. I had to go out of pocket to get the ADHD diagnosed, but once we got the diagnosis and started the med we were able to continue getting scripts through the pediatrician. We have not been back to the dev peds since.
Another fun fact, the dev peds and other specialists gave me scripts on multiple occasions for the alert program through OT, but their OT provider does not do the alert program. Each time we would go in with the script, be told how annoyed OT therapist is that they keep getting these scripts, and told DS does not qualify for medical OT either. He also does not qualify for school OT because he does not have any fine motor concerns. Yay.
Some friends of ours have had great success with interactive metronome therapy, which the children's hospital we are switching to offers. I wonder if their OT also offers the alert program? Or if they do CBT? We went in for an appointment with the psych at the top rated children's hospital and I begged them in person to try CBT for my son, but they said no. They did however work with his dad on parenting skills, which helped a bit. But it was all behavioral stuff as usual.
I feel like this reads like a giant complaint, but I'm so frustrated at not being able to get DS what he needs. We are saving up some money from not having to pay for the private school anymore, but we have 2 serious (and expensive) house maintenance things we need to pay for before we can afford to pay for out of pocket medical expenses for DS. If I can't find anything through MA I'll do my best to save up to pay for something over the summer. We have paid for therapies in the past, speech (for social speech) and some sort of dubious play therapy, and the costs add up fast! I don't understand why we have such trouble with the top ranked children's hospital. They must be good, right? Maybe they have gotten too big... Or maybe DS is just too much of an outlier? One thing they always do is give me a list of providers to contact for services such as ABA/speech. Unfortunately (other than stuff in their own network) they have never given anyone who takes our insurance! When I have brought up the insurance thing the docs always say that unfortunately they don't know about the insurance side of things. Too bad there is no program to match a provider with a patient's insurance!
But at any rate, your stories and advice are greatly appreciated. I will renew my fight for CBT now that DS is 8 and I will look into all of the other info/links. When you have a child you just never think you could end up with a kid like this. You understand your child could have a mental or physical impairment or a debilitating mental illness or a genetic disease. It's a small chance, but you have an awareness of the possibility. But I never thought, hmmm, maybe this baby will have autism, TS, ADHD, mood and anxiety issues, severe behavior problems, and generally be significantly neurologically impaired, but also be crazy intelligent to a degree that actually worries me. I often wonder if the impairments somehow inadvertently caused the high IQ or if they are totally independent. How much of any of it is genetics and how much was something going wonky in early development? Is this the expected result from the crazy combo of me and his father? It's not like our families have a bunch of super weird crazy geniuses running around! I'm not saying we are normal either, but we all made it through school without getting kicked out or needing full time assistance or mastering a few grades ahead without formal instruction. I know I should love my kid just how he is, but if I could trade 30 points of IQ for 30 points of normal, I'd do it. Not for me, but for DS. I just want him to be happy and healthy and right now he just isn't
