RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays

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Is that where the song "Jamaican in NY" applies?

am launching a sports/interest club especialy for other people with severe or profound autism and/or intelectual disability,its been in the making for ages and have already got some members lined up.
the idea is we will meet up to do something that usualy cant be done without other people involved such as ten pin bowling or to offer understanding and a feeling of what its like around others with similar needs to develop tolerance as well as our parents and carers getting to chat with each other when they can.

am looking for a bit of feedback;especialy from those who have kids [adult or child] with severe autism but anyone is welcome to answer.

what sort of hobbies or interests does everyones kids have?
does the idea of this actualy sound of interest to anyone?

is it legaly and otherwise allowed to have a mixed disabled adults and kids group? have been in one before but dont know if they were allowed or not.
just wondering whether we shoud open it up to youngsters as well, the group is open to people with all levels of disability but will be especialy planned around the likes/needs of the most complex/challenging.

Hi KOR, see my responses

Yes I knew somebody who runs a sports club for children and adults with various disabilities. My daughter has an interest in physical activity such as swimming, tennis, playgrounds, balls etc but not much interest in team sports.


The sports club I know of has mixed age, gender and disability. Obviously you can't leave your young disabled kids in the care of older disabled adults so there is always parents around mainly to make sure nobody gets hurt.



My understanding is there is no trouble mixing up groups as long as there are parents around. One thing you need to keep in mind is that these clubs are not going to be attractive for all disabled folks but that's not to say they cant join in.

My teenager likes to take pictures/ videos, and to run. He runs with me (long distance) but I don't think he would be okay running with multiple people.

My preteen likes swimming and trampolining especially, but he any time he's allowed to be as energetic as he wants, he likes that.

We belong to a similar group. I think it's more about the parents than the kids though, to be honest. Our kids don't interact much and we don't generally have high expectations regarding their participation. A few weeks ago, we went trampolining, and I think all the kids went on for a while, but my teenager mostly just wandered around (not on the trampoline). We booked the whole place though, so it was nice because I didn't have to worry about him freaking someone out; I could just let him wander by himself a little bit (since all the caregivers know him and are looking out for him and know to stop him from self-harming, etc.). I think he likes that freedom of not being followed constantly, too.

Our group started off for parents of autistic children, but now our kids are all growing up! Soon they're going to be autistic adults!! ! I don't know about the legality of it.

Until a few weeks ago I organised a gym for ASD kids (still running I just handed over to someone else) that we run once a week. As all our kids operate at different levels there are some challenges to overcome. The place we hire is a large indoor gymnastics gym with trampolines, beams, crash pads, bars, climbing frames, and a large padded floor space etc etc. Some of the kids (e.g. my son) do not participate in games because that is not what interests them, or they do not see the point or do not understand. But that is OK, we would have some kids religiously following what they were told to do, and some kids trying their best, and then other kids just running around and doing their own thing and jumping on trampolines. Slightly chaotic but the way I see it at least everyone gets some sort of exercise and has some fun out of it.

So it's a great idea, but as I say you do need to cater for different people. And maybe Ten pin bowling is a good fit for that. You could have some people who are actively interested doing bowling and competing, maybe some others who have difficulty with the balls can use the ramps, and then some people might be interested in just being there and having a bit of food and drink and watching. And you can encourage them to have a go. Pool is another one I have seen people with various SN have a go at successfully.
My suggestion though might be to just be aware of busy times/noisy times and plan to go when it is less so, but then I'm sure you're fully aware of all that! One thing we had trouble with was some of the real young kids like 3 - 5 could be very screechy or cry at times and that would set some of the noise sensitive kids off, so we split the group into two classes ages up to 7 and then 7 and older to mitigate that.

Hi

I'm in the process of setting up a special needs trust for my son. How do you find the institutional trustee?

Most commercial banks (such as Wells Fargo) will act as an institutional trustee for your son's trust, especially if you bank with them. It is a bit expensive as they charge a percentage of the net asset value as their fees for creating and maintaining the paperwork for auditing & tax purposes, and for administering the trust. If you leave your son under a million dollars, the trustee fees alone can quickly deplete the trust, leaving very little for your son to live on. On the flip side, though, is that you have real peace of mind knowing that no one can steal your son's money or swindle him out of his fair share of your estate (especially if you have other kids that you may not really trust or want to have access to your special needs child's assets).

Also, if you are going to leave him a house to live in, you may want to consider an irrevocable QTIP trust for his benefit and for his use for his lifetime. I am not entirely sure if *you* can set up a QTIP to benefit someone who is not your spouse, but it is worth looking into. We just sold our house and if / when we ever buy another house, we would buy it in the name of his special needs trust, not in our names. Just making sure that he always has a roof over his head.

Good luck !

My son has been ever improving at listening and following instructions, and this makes me very pleased.

An example is often in the morning my son will get up, open the fridge or freezer, have a look for something and then leave it open. It then beeps until shut. So we have to get up and shut it. This morning while my wife and I were lying like sloths in bed, we decided to see if he would do it for us. He wandered off down the other end of the house, not much happened. We kept shouting "James - shut the fridge please" then we hear the sound of the door shutting and the beeps stop.

A small triumph!

Toilet training, not so much success, but I guess you take what you can get.

That's exactly what I find with my kids. I'll tell them to do something with no expectation that they will, and sometimes they just do it!

That's exactly what I find with my kids. I'll tell them to do something with no expectation that they will, and sometimes they just do it![/quote]

Yeah. My son, out of the blue, just suddenly asked me for chopsticks to use eating rice.

We are actually getting somewhere with this. He will use the toilet for #2 but not usually #1. If he is wearing a diaper he will just go in the diaper but if it's underpants he will usually ask for the toilet.

Have you tried letting him go around pantsless? Some people have success with this method. We did it for a day but I'm not sure if it hand any effect or not.

My son is toilet trained now but still has to wear pull-ups in school and therapy...otherwise he will purposely wet himself to get out of doing work...

Excellent news Wreck-Gar. One step at a time.

HI everybody, I'm quite new to the forum, but I guess I fit better in this section rather than in others.

My son has just turned 7, he was diagnosed with mild autism at the age of 4, but he has echolalia, speech delay, and recently he received ADOS 2, from which he came out severely autistic (he scored 18).

For the moment it didn't come up any mental impairment, but both his new neuro-psychiatrist and is ABA supervisor suggest it will come up, though apparently his IQ seems to score high in some areas and very low in others.

He is enrolled in a Montessori primary school, where he will attend 2nd grade in a few days, and seems to have found an environment that suits him, other children welcome him and as his teachers said, "the class dances around him".

Despite this, we have observed that his ability to interact with peers is decreasing constantly. We will try again this year some small group activities he enjoys with other classmates, and see how it goes.

But during summer we met some family friends with other children he knew before and it was constantly retiring himself, more than during previous holidays.

Re: toilet training: he has control, but tends not to communicate his needs, which ends in us having to stay alerted to take him to the toilet when he needs (and having his pants dirty quite often... I must confess having used reusable diapers it makes 7 years washing pants and I'm a bit fed up!)

I've read bits of this huge thread and found common concerns with other parents (he's one child), especially about his future as an adult.

I do hope that in the meantime the situation where we live (Italy) will improve, since as far as I know currently there is only the option of institutionalize him, which I will avoid try by all means as far as I'll be able to.

Thanks for offering this space to share experiences.

I'm sorry my English is getting worse since I've stopped practicing it all the time. Hopefully, staying here will allow me to get back on trail.

Hi, welcome to the group.


At some point over the Summer my son started "accidentally" wetting his pants. Not big accidents. Just a little bit because he was stubbornly refusing to go til the last minute and/or (I think mostly deliberately) missing the toilet and getting it on his pants. I think he just liked having an excuse to change his clothes in the middle of the day, I expect he'll stop doing that now that he's back in school again.

He's also recently started talking like Cookie Monster, I think a negative side effect of his Dad always letting him watch a particular toy reviewer over and over on YouTube who has a couple videos featuring Cookie Monster so she does a Cookie Monster impression. "Me want this, me want that." ... trying to correct that now, of course now that he knows it bugs me he occasionally does it deliberately.

Hi Mei,

What does your son score "high" in?

It's very frequent for there to be a large difference between "verbal" and "performance" scores within IQ tests administered to people with autism.

Is he able to have conversations with people, even if he doesn't desire to have conversations?