I don't know how much more I can take.

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Sounds a bit like my son, before his therapies. He was diagnosed with autism, but with therapies, he is now pretty much recovered. My thoughts: for the sound sensitivity, I would put him an elimination diet. You don't have to have an allergy test for that. Whittle down his diet to just a few basics, then slowly add new ones in on a schedule. Keep a log of what he has consumed. Definitely leave out dairy products in any form (milk, cheese, cream, whey, etc) and gluten. REmember that these things are hidden in most processed foods, so it's best to stick to basic, homemade foods. Also don't feed soy products.

Also for sound sensitivity, try Therapeutic LIstening. Helped my son.

If constipated, there is clearly something amiss with his diet. Give probiotics 3x per day. Cut out foods as described above. Give enzymes with each meal. Cut out sugars, artificial colorings and flavorings, preservatives. Not easy, but with my son, it worked wonders. Went from frequent diarrhea to great poops.

Your son needs an OT with sensory processing training or certification. Is it possible for you to see one? If not, the suggestion to read The Out of Sync Child is useful.

Definitely it's a good move to dump that pediatrician. Useless, but pretty common. You need a professional to get on board with you pronto. Your child is going to be kdg age soon, and you of course want him to be able to handle a regular classroom.

Speaking in the third person is a common trait with autism. Being smart does not mean the child does not have autism (my son). To teach him how to speak using proper pronouns, we had to constantly work with him on it. I don't agree with another person who posted to let it go, but it's your decision.

Where do you live? If in California, I could certainly point you toward ways to get help....Good luck.

I second doing an elimination diet. Has worked wonders for one of my kids and has improved the other. I think sensory issues are particularly hard to deal with and treat! It can be very frustrating so I feel your pain.

Please if you have time go to this website and just spend time reading all about how even fruits and vegetables can affect certain children.

It wont allow me to post the website but if you type in Sue Dengate and Fed Up you should find the fed up website:)

Oh and gluten can take 12mths to get out of your body!! ! But I found one the gluten and dairy was out then the kids could eat more foods with little problems!

Cat

our autie has always had serious sleep problems stemming from sensory issues, starting from as soon as he was born. now at 5 1/2, we can get him to sleep most nights at a decent hour, all we have to do is what works for him. that means going to sleep against my back or his dads, and staying there all night. yup, he still sleeps with us, and one of us wakes up every day tired and with a sore back, but at least the other had a half way decent nights sleep and we trade the "back monkey" back and forth from night to night. this is the only way to get him to go to sleep and stay asleep.

just keep trying various things, and dont get caught in the trap that a child must sleep in their own bed in their own room and must sleep x amount of hours. kids are different, those with sensory needs especially so.

and i hear you on the fan thing. last summer when he was 4, he was constantly turning off the AC. not good when its 90 degrees out and our house is a geek's haven, with tvs, computers, and game consoles constantly pumping out heat. this summer it hasnt been a problem, as he hates being hot, and decided its better to hear the noise than to be hot.

I have to confess, I have a lot of trouble with the popular term, "recovered." Most members at this website do. I realize that food sensitivities and other issues can make a child act as something other than his best self, but they don't cause the child to be lost. Recovery implies that you take back something that was lost, as if the child was not autistic before or after. But the child is still autistic after "recovery," just less impaired by it. The term also suggests there is something wrong with being autistic, when many members here will testify that there isn't. Certainly, there is something wrong with feeling sick all the time, and some of the more severe possible aspects are life impairing, but there isn't something wrong with simply "being" autistic. I've watched many, many recovery videos and testimonies and one thing is clear: those children are still ASD after so called recovery, just as my child is, just now functioning well enough to make a life, also just as my child is.

I really wish the discussion would change. That one word drives a huge rift between different segments of the AS community, that might otherwise really help each other. I feel that mitigation is a much more appropriate term, that more accurately describes what is achieved through therapies, appropriate parenting techniques, and diet changes.

We have discussed diet much on this forum, btw, and figuring out what the child is sensitive to can make a large difference, there is no question. Anecdotally on this community I would say gluten is the number one culprit, casein or lactose second. After that it seems to be up in the air with soy, eggs, and food dyes. My son is soy sensitive, so I was very glad that you remembered to list that! I always worry about parents going GFCF and replacing the C with soy. The main caution I generally give is not to overdo it, because that can deprive a child nutritionally and make things stressful for the family. But, it is a question of balance, which each family must find for itself, based on how sensitive their child seems to be, and what all the other considerations involved are.

My son did, btw, seem to outgrow most of his sensory issues. Many AS kids do that, just as many kids of all neurology stop being such picky eaters by a certain age. It can be really hard to know what is cause, and what is effect. I think the peak of sensory issues was around age 6 or 7, right up there with the pickiest eating years. Now that he is 14 I can't think of any sensory issue that still gets in the way for him; they have all been managed. And the funny thing is, we didn't work that hard at it. We honored the sensory issues, mostly, but did nudge him to tackle them when he seemed able. I can understand not wanting to rely on that, of course, but having been in on the earlier years of the diagnosis wave, it is interesting to see how the results have played out between our approach, and that of parents who have taken a more aggressive approach: pretty much exactly the same.

I really do think that milk/dairy affects him negatively; I brought it up to the (old) pediatrician a LONG time ago after the "snowpocalypse" of 2009 (we were trapped indoors for about a week and ran out of milk and I coincidentally noticed that his behavior much improved--his ped. thought I was some crazy lady and insisted that could not be true). I've taken him off milk, but I haven't completely taken it out of his diet. I think I need to work on that.

I live in PA. I would ideally like for him to have OT, but I'm not sure if it would be covered by insurance depending on diagnosis (I'm not sure if my insurance covers SPD since it's not in the ICD or DSM; if he got an AS/PDD diagnosis I'm sure they would).

He has been horrible the past few days. Last night he had a meltdown and I remembered that wrapping him in a blanket helps and he calmed down. After he was calm last night I asked him if he knows why he cries and hits, and he said he doesn't know. Today we went to the science museum and enjoyed a lot of it, but cried and covered his ears for a lot of it (there was a "life-sized mousetrap game" he really wanted to see, but it was really loud once it started). I'm glad he didn't completely flip out.

I used to swaddle my son until he was about 4 1/2 years old. Totally helped in the sleep department. He wanted to be touching me as much as he could while going to sleep. But, I just couldn't do it. So, I started swaddling him, like I did when he was a newborn and he LOVED it. After temper tantrums, he asked that I wrap him up.

Think he might like something like that during hte day when he's agitated?

We do that! He loves being wrapped up. . .sometimes now when he's having a meltdown/toward the end of one, he'll ask to be wrapped up.

So my update: we had an evaluation with a pediatric psychologist, which basically resulted in a. . ."I don't know at this point"? She thought he did have some traits of AS or ADHD or a mood disorder, but he was too young to tell. She also felt like his amount of "joking around" at his age pointed AWAY from AS?

The new pediatrician said he wouldn't be surprised if he has a diagnosis of ADHD in the next few years, but also said there might be something going on with him neurologically because of the extreme sound sensitivity. Since I get migraines AND have a seizure disorder (and both are frequently comorbid with AS), it's really hard to tell at this point. He started wraparound services which have been. . .I don't know. Kind of a waste of time so far. But the more helpful thing is that he's started preschool. He really LIKES it, though his teacher said it's hard to get him to talk sometimes. He seems very "babyish" to me compared to a lot of the kids there sometimes?

We also started Music Together class, which he is really into usually at first, but when the class gets loud he starts covering his ears and wants to leave. He's doing okay with it though. OVERALL he's doing a lot better, but still has his moments (more often than I'd like!).

Did the psychologist perform the ADOS? What are "wraparound services"? Does it include OT? Is his preschool a special needs class through the school district, or a neurotypical class?

My son jokes around. He has a great sense of humor. Many of the Aspies on this forum have killer - very very dry - sense's of humor.

But, in more severely affected individuals, you will see an inability to "get" many jokes.

Hopefully the professional you are working with has some sense of what the modern spectrum looks like. It can vary a lot. Yes, it is really difficult to diagnose some kids at younger ages. My son wasn't diagnosed until he was 7 and I don't really feel it could have been definitively done before that.

Glad to hear preschool is going well!

I don't think the psychologist did the ADOS. Wraparound is, basically, in home (and/or school/community) behavioral therapy. I'm not confident that our therapist is quite expert on the spectrum. I'm not sure how long I'll continue it. I'd have to get an OT referral from his doctor.

His pre-k is a general classroom. I'm pretty happy with it; his teacher is pretty great, so far anyway.

Today I had two incidents of being upset at his inappropriate response: first, he was watching "Caliou" and one of the characters got hurt and had to go to the hospital, and he thought this was hilarious? Later, we were transferring his chrysalises (he is doing a caterpillar/butterfly house) and he knocked two of them off the disc and they died, and he just kept fooling around with no care in the world. Now, that might not seem that odd, but he was so excited to grow these butterflies. I asked him if he understood what "dead" meant (and explained it) and he said yes, but he still didn't care. I asked him if he'd care if our cat died and he said no.

He is so loving and affectionate and at the same time...I don't know. I'm not sure if it's his age and I'm making more of this than it is, but it really upset me. I tried to talk to him later but getting him to talk about his feelings in any way is pulling teeth.

I agree that Asperger's children can be very humurous. My son is hilarious. He has a very dry, witty sense of humour. The so-called professionals also suggested bipolar disorder when my son was young because he was very violent. He still has meltdowns, but violent lik e used to be. I am conviced it was due to the frustration of not being able to communicate effectiely and livin in a world that doesn't make sense to him. He is learning how to cope and compensate.

I didn't see it here anywhere - I may have missed it - but have you had your son evaluated by the Intermediate Unit? It sounds as if you are in the US. Your son is in preschool so he can be evaluated by the county intermediate unit and they can recommend interventions and impliment them quite quickly. At kindergarten age, the school district can evaluate him and put an educational plan together.

It seems pretty clear from your descriptions that your son has - what sounds like - distinct sensory issues. Any doctor that knows even a LITTLE bit about sensory issues would never tell you 'to wait'. I agree with others - you need that developmental ped ASAP. I had a doctor tell us the same exact thing for years - pleasepleaseplease - don't wait that long.

I've been using melatonin with my daughter for years. One of the biggest helps at bedtime was as much physical activity during the day as possible - which is a challenge. And a long bedtime routine designed to wind down about an hour before bedtime that included warm bath, lavendar scenting the sheets (no smell sensitivities here), lava lamp projection type nightlights (almost hypnotic to watch) and other stuff. We change up the techniques because ADHD has her losing interest at varying intervals. Putting her to bed right after a snack - with a full belly has helped her stay asleep longer too. Not recommended weight/health wise but fluctuating blood sugar was a huge issue for us. Keeping a stable sugar level really helped bring an end to tantrums. Our most recent addition to the list has been an iPod which has also helped quite a bit now that she is older.

You definitely sound as if you are having some significant issues that need to be taken seriously. Hang tough mom!

Yes, actually the IU was where I started (even though he got "waitlisted" for public Pre-K--who knew one can get waitlisted for public school!). They basically said that they only deal with "educational" issues, and that he tested very advanced academically so whatever "issues" he has isn't interfering with his ability to learn. I was like. . .yeah, but I don't think the bar is set very high (here at least!) as far as academic achievement: I mean, if he's smart enough to get into Harvard and the school system can only get him to Pitt, they've failed him, as far as I'm concerned (if that makes sense). Anyway, that eval was before he ever started Pre-K; they said that they'd keep a file on him and basically check in on him when he starts public school; if there are any problems they would re-evaluate and start an IEP. Another thing that bothered me about that eval was that the OT wasn't there.

I talked to his Pre-K teacher today, and she said that his behavior at school is pretty good in general (he's only there 2 1/2 hours a day, 3 days a week--I can't even afford that!). BUT. . .she is concerned that he generally only plays alone. She said he seems CONTENT to play alone, but she's trying to encourage him to interact with the other kids more often. She kind of tried to blow it off as "just being his personality," but combined with everything else it concerns me. The other kids there just seem so much more. . .socially mature.

I'm just bringing this up to see if other people's kids do this: If someone asks him how he is ("how are you?") he always responds "I'm four." Always. He only recently (in the past 6 months or so) started responding with his name (If someone asked "What's your name?" he'd respond, "Name").

It just seems weird to me, since he can explain scientific processes way beyond his years, but can't. . .you know, respond to "how are you" appropriately?

Hoodie sweatshirts or headphones are a great idea. Also if you can find anyone in your area, I have heard great things about auditory integration therapy. It can help reduce sensitivity to noise.

SO; here's my update on where my kiddo's at:

He still has no diagnosis. He has a new pediatrician, who thinks he will probably be diagnosed with ADHD or another disorder at "some point", but he referred me to a specialist. That specialist doesn't do evaluations and referred me to another agency. I feel like I'm running in circles.

His tantrums/meltdowns have improved a lot, or at least we've been able to circumvent them more effectively? I can tell when he's getting worked up and have been trying to work on him communicating his needs with me, which works sometimes better than others.

Preschool isn't going as well, though. His teacher says he's very advanced academically, but the furthest behind socially/maturity-wise. I've watched him interact with the other kids, and just observing the other kids, he's just not where they are at all. He tries to make friends but he's so socially inappropriate: he's up in people's faces, says weird things, repeats weird things, etc. Kids basically just think he's strange. I always had (have) trouble making friends, but it's more of an issue of coming off as shy/cold/aloof. He's got more of the golden retriever approach.

I didn't care so much about diagnosis before, but I really hope this agency gives him an AS/HFA diagnosis because there are social skills classes in our area that I think would be the best therapy for him. That and OT for his sensory issues (sensory time is included in the social skills classes, though). Ugh. It's hard to be taken seriously if someone's more. . .borderline, I guess, than a clear-cut case.