Moms of kids with aspergers

[Cat]

I need some advice on how you moms parent your kids that have aspergers or sensory issues. Do you parent them differently than your kids who are okay? I need to be educated on how to parent him since he has both adhd and also the possible asperger's with sensory issues. In other words I dont want to punish him or fuss at him for stuff that he cannot control or that his brain sees as different.

I know we will be getting the counseling for this but I need to know some stuff now. Its really stressful to have to deal with this sometimes.

[Aunt Sponge]

We have 5 kids - and our oldest has asperger's, our 2nd has other issues - overall we hold them to the same standards of honesty, behavior, manners, etc. Our oldest can and does understand all of those things.
The big difference with him is that it just might take him longer to understand - or he needs more explanation, etc. But he can comprehend everything if given the chance.

My son's sensory issues are muted pain (aka - he has high tolerance for discomfort which can lead to infectins and such going un-noticed. And he shuts down if he's in a stressful situation that he doesn't understand - this is involuntary, he can't help it.

The shutting-down is the hardest issue we deal with because it isn't easy to avoid, sometimes, and it can be the most problematic. If I ask him a question and don't use the proper tone and I come across too harsh - even if my words aren't harsh - he'll tune me out and then nothing I say will get through to him, regardless.
So then he has to take a few minutes to "snap out of it" so I can re-address the question, comment, etc, with a different tone.

He is, also, emotionally "mingled" - he feels emotions but they sometimes get confused. sometimes he feels happy when he's really sad - sometimes he shows sadness when he's feeling happy, etc. And that's something that he had to learn how to deal wit on his own.
Really - he had to deal with his emotional mix-ups logically - so we started using social-stories for him to grasp all these emotionally-charged situations and what to really do in response (aka - acceptable behavior) (if you type "social stories" into a search engine you'll find all sorts of information about them - they're very benificial)

He's written all of social stories and we keep them in a book for his reference.

One of his social stories is:
"Sometimes people have animals that they call pets. When a pet dies it is sad. Sometimes people cry and sometimes people are mad. It is ok for me to cry and get mad when a pet dies. It is not ok for me to laugh and be happy when a pet dies."

and so on.

It took us a long time - several years - to fully realize his exact issues. But once we finally figured them out it made communication with him so much easier!

and goodluck - I know it's frustrating.

[Cat]

The shutting-down is the hardest issue we deal with because it isn't easy to avoid, sometimes, and it can be the most problematic. If I ask him a question and don't use the proper tone and I come across too harsh - even if my words aren't harsh - he'll tune me out and then nothing I say will get through to him, regardless.
So then he has to take a few minutes to "snap out of it" so I can re-address the question, comment, etc, with a different tone.



this is almost similiar to what robbie does too. alot of times he will just shut down and wont even answer us when we ask him whats wrong or try to get him to talk about stuff. He just clams up instead or tells us he doesnt want to talk. that in itself is very frustrating. He also tries to point alot when communicating instead of using the words he knows he has.

[Aunt Sponge]

Yeah - I know what you mean!
When my son was younger (right now he's 10) it was the biggest problem we had and I had no clue how to deal with it - I'd get really upset with him and that just didn't help. It just took a lot of strength on my own to keep check over my voice, words and attitude - and the more restraint I showed the less often it was a problem with him and the easier the days were.
AFter I finally figured that out the self-restraint became habit and it was no longer a personal struggle and it didn't "get to me" and irritate the crap out of me

He, also, obcesses over things - clocks ticking, a fan spinning. And when he started school (7 years ago) that was just pure hell. It took a lot of interception and redirection from the teachers and everyone to teach him how to stay focused.

There were other things that were major issues for a while - like items having two words. "trashcan and garbagecan" If I used the wrong term he's correct me - I would actually argue with him about what word to use and when
Eventually we had to just teach him that "it is impolite to correct someone else's words." and "sometiems things have more than one word."

Awe - fond memories.

Hang in there - the most benificial things to him and you probably are patience, self-control and logic.

Also - some children with aspergers (not my son in particular) but others sometimes have alot of help when they war a weighted jacket that makes them feel snug - like they're being hugged - all day.
I don't know much about it, but ask your Dr or a specialist about the symptoms that this relieves and if he can be tested for use of it.
If your Dr says it might be worth a try - go for it. Iv'e heard that in some children with extreme sensory discomfort it can make a huge difference.

[Cat]

thank you so much for your story and advice. I need all I can get. I have tried to tell robbie that I am not a mind reader and dont do the pointing thing and he needs to use his words with me to tell me what he wants or how he feels. My DH has had more issues with the voice tone and attitude and occasionally I do as well but that just makes him shut down even more which isnt being productive at all. so its going to take us alot of patience to deal with this and I truly hope that as he continues to mature that he can outgrow some of the sensory stuff too.

[Trey]

Cat, did he get an autism diagnosis?

Is he in any therapies right now for either the autism or the sensory stuff?

I have a WEALTH of information I can share, but I am headed out the door right now to take Tooters to preschool. Let me know specific habit and traits and behaviors you are having a hard time with and I will share what I know from Riley's therapies, my brother and working with children with special needs.

[deewix]

I do have to do things differently with my son than my older two daughters. After realizing how he did handle things and how he reacted.......I have had to change some. It is harder for my older two sometimes........more the middle one than the oldest, because my middle child who is going on 11.......her whole theory is everything is unfair to her. My son, I let some things go with him, just because of I know his reaction or how it is going to affect him.........so when the middle child doesn't get to get away with it.........everything is unfair. Those are my issues right now dealing with all of my children and Jonathon's diganosis of Asperger's.

My son has made a lot of progress with dealing with some of his issues. He doesn't have as many meltdowns as he used to. I usually can sense when it gets to a certain point........I try to redirect or drop the situation and come back to it later. I have pointed out to his teacher's at school........he is getting close to his breaking point when he starts running his whole hands through his hair, almost pulling his hair. Once he becomes frustrated or aggitated at that point.........if you don't back away from the situation, he will go into a full meltdown usually. I think it is a learning process with him everyday.

[Cat]

Originally Posted by Rileysmom Cat, did he get an autism diagnosis? Is he in any therapies right now for either the autism or the sensory stuff? I have a WEALTH of information I can share, but I am headed out the door right now to take Tooters to preschool. Let me know specific habit and traits and behaviors you are having a hard time with and I will share what I know from Riley's therapies, my brother and working with children with special needs.

oh no he didnt get an actual autism diagnosis because they are still testing but they did say that it falls in the aspergers/autism spectrum and there might be some other issues with that but thats what we will find out when they finish the testing. I know he has some sensory issues and auditory is a big issue. He is in individual therapy and we are doing family counseling as well. once they have completed the testing and determine exactly what he does have then I am sure we will be receiving some help for the sensory stuff. I just dont understand why sometimes certain things will bother him and that at another time it wont. Is his brain just confused or just doesnt work right at certain times?

It would take alot of my typing out what his main issues are on here. It would be easier to talk on the phone.

[Cat]

oh I do have one question. as far as the meltdowns go do all kids with aspergers or autism have meltdowns or can some react and have a meltdown in different ways from like a physical meltdown to an emotional meltdown like just getting really angry. robbie doesnt ever throw himself on the floor and kick his feet when he gets upset so thats why I dont think its severe, but he mainly gets really angry when we try to get him to talk to us or either he will tell us not to talk. sometimes he will growl at us too. He cant stand it when we ask him the same question over and over again but if he doesnt answer us the first time we are going to ask him again.

[Aunt Sponge]

Well - diagnosis always help to read up on the proper information. But sometimes all the diagnosis and tests in the world just won't help. They can be benificial - but if your child has symptoms that are all over the place it's not as helpful. (this is our problem - we've had him officially diagnosed with 3 different autism-issues. Made for interesting reading but people at school will pick one to go with - and that's caused communication issues.)

It's completely normal for children who fall within any portion of the autism spectrum to have a variety of very different problems (like physical tantrums sometimes - and shutting down other times) It's all mental-processes that get "hung up"

We found that it was easiest for us, both, as a couple to decide how to deal with ___ and ___.
If he was angry and throwing toys we always ____ or ____. (no more than two consequences/methods of dealing with it or it would get confusing ) If he was being "slow" on purpose (like if I told him to "hurry up, we need to head out the door!" he'd intentionally slow down) then we'd have another set of specific reactions to follow.

Every now and then we'd change it up - but everything we did was agreed on between us as a couple so our reactions were always the same. Just a stress-relief and it helped me out a lot when my hubby was deployed and I was a mental mess.

Autism-spectrum children need routines - and so if you adopt routines of your own that will allow your family to function more smoothly then things will mellow out a bit.

Per the questions and not answering them.
It's probably not that he can't answer them - it's that it takes autistic children longer to fully process and udnerstand just WHAT you're asking.
"did you feed the dog, today?" - in their mind is a comprehension process of "where is the dog? He's outside? Did I go outside and feed him food? Yes? When did I feed him food? Did I feed him food, today? Yes, I feed him food, today. . ."
So just try slowing down a bit - pick your words and qeustions carefully so things are simple, precise and plain and then give him time to think about it.
I, also, squat down on his level so he doesn't focus on me towering over him - and it lessens distractions.

But we've been dealing with this for years - in the beginning when we realized we had some major problems to figure out I use to have to get him to focus when I was talking to him - he'd get distracted, want to play, watch tv, etc. I'd have to physical block his vision so he cuoldn't see things or touch his cheek to direct his eyes back to me. AFter a while he got pretty good at being able to focus on his own.
So it's a 2-way learning process. You need to learn how to deal with him and he needs to learn how to deal with you. the younger they are the more difficult that is because communication isn't strong. I remember my son getting very frustrated when he was trying to get me to understand what he wanted or was thinking because his vocabulary wasn't efficient. And he still can't tell me why things are difficult for him to process - how can anyone explain "i think differently than you do" to anyone, especially if it's a child. So we had a lot of hit-and-miss when it came to how to deal with things.
Practice makes perfect.

And there's how they learn - how they learn how to comprehend. Often such children have a "glitch" in the learning process. When a "normal" baby is learning what things are called they can learn by listening, watching and through contact. If you often tell a baby to "back up" in order to get out of a corner that they crawled into then the baby will eventually figure it out - you might have to show him/her what "backing up" is - but they'll understand and they will never forget and will always know what you mean when you say "back up" once they get it.
For autistic children - not all but some - in the beginning this process is slowed or disrupted and such things aren't so quickly learned - or they're easily forgotten. So frequent reminders are necessary to teach these things and frequent "hands on" as well.
Even now I come across things that he doesn't understand and it throws me for a loop. Like the other day I realized my son really didn't know what the phrase "back up" meant. Once I explained to him what I meant when I said "back up" he was like "oooh, I didn't know that" - because it often doesn't occur to him to ask "what does that mean?" Instead of asking for clarification he's gone his whole life not really getting it and who knows how many odd situations that's led to outside the home.

I know it's so hard! But patience is a virtue and if you don't have much ('cause heaven's know we didn't have ANY - I swear we were horrible about it) then practice patience and it'll become habit.