OT-Autism Question for mommies

mechanicmom

Or friend's of autistic mommies...or whoever might have an answer.
One year ago (this month) Alex was diagnosed with Autism and neurosensory disorders. He was severe last February, but now he is mild to moderate. He's 3 now. All his therapists and friends of ours have told us that he would be better, almost "normal" in a matter of months. To all of them, he is doing great, but they don't see what is going on behind closed doors. He behaves well for and in front of other people, which I think is pretty normal. He's improved a lot in speech and in other areas. The area we are having a problem with is change. If anything is out of the norm he goes ballistic! If daddy takes him to the bathroom instead of me, he screams and cries. He won't settle down until I take care of the situation. He will literally carry on for hours if we don't do something about it. My question is: do we push him out of the normal routine some times and try to help him grow? Or do we keep him in a routine and keep him happy and ourselves sane? It's not just a bathroom issue. If daddy so much as removes the tray from his booster seat after eating, he gets mad. He wants me to do everything because I am home all day with him so that's what I do. Oh and if I leave to go somewhere, he has no problem letting daddy do those things. Any advice?
Thanks!
MM

mechanicmom

Or friend's of autistic mommies...or whoever might have an answer.
One year ago (this month) Alex was diagnosed with Autism and neurosensory disorders. He was severe last February, but now he is mild to moderate. He's 3 now. All his therapists and friends of ours have told us that he would be better, almost "normal" in a matter of months. To all of them, he is doing great, but they don't see what is going on behind closed doors. He behaves well for and in front of other people, which I think is pretty normal. He's improved a lot in speech and in other areas. The area we are having a problem with is change. If anything is out of the norm he goes ballistic! If daddy takes him to the bathroom instead of me, he screams and cries. He won't settle down until I take care of the situation. He will literally carry on for hours if we don't do something about it. My question is: do we push him out of the normal routine some times and try to help him grow? Or do we keep him in a routine and keep him happy and ourselves sane? It's not just a bathroom issue. If daddy so much as removes the tray from his booster seat after eating, he gets mad. He wants me to do everything because I am home all day with him so that's what I do. Oh and if I leave to go somewhere, he has no problem letting daddy do those things. Any advice?
Thanks!
MM

lovechocolate

Hi there,
I have a son with asperger's syndrome. He is 5 now but was diagnosed when he was 3 so I am two years down the line from you. The good news is that 2 years ago my son is where you are now, but he keeps progressing. So it won't be like this for ever, he should become more settled and able to cope with changes as he grows up.

I think from experience, that your son is trying really hard to moderate his behaviour in public, but it can be overwhelming and exhausting, so when he gets home he needs to 'let it all out'. This is normal for a spectrum child. My advice would be to go easy on him at home, it needs to be a place where he can feel safe, then you can put strategies in place to reduce his anxiety.

Also, in terms of changing the routine, try to do one thing at a time. Don't tackle everything at once. Maybe change one thing in his routine, but tell him about it first e.g if you always give him his bath, tell him maybe an hour before, that daddy will do the bath tonight. Have you been using visual timetables? These were really helpful when my son was little, but now he doesn't need them anymore.

Please feel free to message me if you need any more advice!!

Debbie

amyalwaysonline6

I've worked with a lot of autistic kids, I work at a special needs daycare. Autistic kids are very stubborn. I'd stick to routine as much as possible, but it can't be you all the time. He'll scream and get mad, but it wont hurt him.

lovechocolate

Yes they do need routine as much as possible, but they need to learn how to cope with changes. There are strategies that can help :-)

Also, he may not scream and get mad. Some children show anxiety in other ways such as flapping or repetitive behaviours. A child lashes out when they are in distress so we need to try and reduce their distress rather than let them tantrum.

When my child was diagnosed I went on a course to learn how to manage and modify our child's behaviour. Is there something like that available to you?

Kind regards,
Debbie

mechanicmom

Thanks Debbie,
I may PM you when I get a chance. It's nice to know that I'm not alone.
MM

AmandaJ

HI, my dd has Rett Syndrome which is on the spectrum. She has seizures and is completely non-verbal. She also has no use of her hand whatsoever. She has a routine and just screams when things get messed up in her way of thinking. I just want to offer you hugs, it is difficult I know.

mechanicmom

Thanks Amanda for the hug. I need it! :flowerforyou:
Debbie, I don't know if we have a course available or not. I know there are support groups around here. I was wondering if we need to get involved in one. I think, with all the people that have told us he will be fine, we have been in denial that this could be a very permanent thing and we need to learn to deal with it. I know he will continue to progress. Do you think some of this is just a phase since he's three? I just don't know how to break the routine some times and get him to calm down enough to do what we ask. We are trying to adopt a child or two so I would like to know how to help him in those situations better, so we can prepare him for all the changes that will be coming up. One thing I have noticed is that after a good temper tantrum/meltdown he does seem more "awake" and aware. I'm going to talk to his OT about all this and see if she can help too. Thanks!
MM

mommachag

I deal with the very same thing here with sammy. everything can be a battle and it gets old fast

what we do for sammy is have picture scedules up. near the potty there is a picture of mom and dad.
near the bath its the same thing. everything he needs help with there are pictures of the people who ay help. that way he was able to adjust to the idea without having to do it. and when it did happen it wasn't terrible. i dont know if that helps

this is hard. but everyone says it gets better

lovechocolate

If I was you I would definitely go to a support group. They can offer you advice and companionship and you will realise that having a child with ASD isn't really so bad!!! My son is absolutely wonderful, clever, funny and gorgeous. The strategies we have learnt (e.g. Picture schedules, reduced language etc) have helped immensely. My in-laws had trouble accepting things, they were always saying "It's just a phase, he'll grow out of it" but the fact is that ASD children need special strategies and the earlier these are put in place the better. Please don't bury your head in the sand, go and find out more get as much help as you can for your son. Take care x