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Old 11-30-2006, 03:59 PM   #81
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Re: parents of autistic children

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Originally Posted by babamama View Post
i just read thru this thread & i'd like your opinions if that'd be ok...
my son will be 2 in july, & i'm just starting to look into Sensory Integration Disorder, so i'm still trying to grasp everything.
we lost our daughter at 38wks gestation around Christmas, so part of me keeps saying "there's nothing wrong, you're just trying to FIND something to focus on", but i truly don't think so (& i've soulsearched about it)

after reading a bit & thinking back, CJ's had these lil "quirks" since he was a newborn, but just in the last 10mo it's becoming really apparent.
first off, no grass lol- aboslutely HATES grass, finally got him walking in it if he's got shoes on (sometimes lol), & 'weird' feeling objects, like kooshballs & slimey type things. we did paper mache & that took him forever to play with (but thankfully he did, it was fun getting messy).
at his 19mo well-check, they'd asked what words he was saying "even if you're the only ones that understand him" well at the time, i think we rattled off 10 or so? & clear they were NOT, but we'd figured out what he was TRYING to say & the dr. counted that. but NOW, he says 'dada'.... actually started calling me 'baba' (used to call me MaMa- dunno if losing the "m"s means much tho). once in a blue moon he'll parrot "yeah" & "ok" but all the other things he was saying alot at 19mo, he doesn't say anymore.
& we're finding it semi-common for him to beat on himself when he's upset/mad (but a friend of mine told me this was normal 2yo behavior?? we don't hit so it makes me feel awful as i know some kids that are hit do this to distract themselves from the environment).
he's got this obsessive touching thing that drives me CRAZY sometimes- the look on his face is almost as if he's not in full control when it happens tho, its' hard to explain.
& then this obsession w/ 'softies'??? lol i mean, i'm a touch person too- if it's soft, i gotta feel it & enjoy it, but if he sees a tag on anything (blankets, pillows, clothes, etc) he just disappears mentally- his only goal is to reach the tag & rub it in one hand while he sucks his fingers. it's gotten so bad actually that i made him some tag-rags w/ poodle fleece/polar fleece & satin tags all around the edges. & now its' gotten even worse that we have to make sure we have one ALL the time or he'll have meltdowns the whole time we're out. give him his rag tho & it's like turning the power switch off. & i'll find him all over our house in corners w/ his rag, sucking his fingers. i mean it's cute & all but it just feels so sad in my gut for some reason.
& oh- is it normal for a 15+mo to organize everything by color??? i was totally shocked when he did this- gave him some fruit snacks & he grouped em by color & ate each color before the next. & it's extended to all food (has to eat all one color then the next), & his toys, he'll put all the colors of his giant legos together, if they get mixed, he gets quite 'flustered' & tears them apart to fix them.

i should add he is my first child, but i constantly feel crazy/stupid/paranoid all at the same time b/c i have no clue what's average for kids this age.
i'm going to see about getting his hearing checked next month too cuz there's lots of signs of some sort of hearing loss too.
am i nuts here? am i looking too hard & these are just normal kid things??
thanks ladies
~marcia~
I just found this thread today, and did not have time to read all the postings. I want to comment on the above post first and then I'll get a little more personal. I think you should use caution with this fixation of his. It sounds like he is self-stimulating on the tags. Stimming out is a bad thing. Sometimes to us mom's with ASD or SID kids, it seems like "Wow, that spinning machine is helping him stay calm for a few minutes!" But stimming out in not healthy and you need to go the opposite way. Do a lot of OT exercises with different textures. On a bad day we used to mix corn starch and water (just enough so it was close to liquid but when you touched it, it became close to solid) and let him play in it with his hands until he had enough. It would turn a bad Friday into a calm Friday. And for clean up, wait till it dries and vacuum.

That being said, my background:
My ds is now 5. We noticed something wrong at 4 mos. I thought he could be deaf. I did many tests on his hearing and his response. What I found scared me. He wasn't deaf. He just didn't always tune in. He could attend to music better than anything else. Anyway, at 11 mos he was seen by a PT friend. She said she didn't think autism--our concern--but suggested several things to encourage speech and said to have formal evals done at 18 mos. We settled into our routines, and pushed our concerns aside. At 26 mos we were horrified by his behaviors at my sister's wedding etc. When he was next to typical boys, we noticed how different he was. At 2 1/2 he was diagnosed with Sensory Integration Dysfunction. We read the Out of Sync Child and began speech, occupational, play, and family therapy through ECI. We moved from NM to TX just before his 3rd birthday. He was transitioned into special ed at ps. They did the CARS test and diagnosed him as moderate/severe Autism. After 2 weeks he regressed in MANY areas. The teacher blamed it on me because after all she has her masters! I pulled him out. We did private therapy--only speech because the OT was terrible. I did his OT myself.

Due to his temper I read The Explosive Child by Ross Greene. Great book, though a bit misleading. He says that Oppositional Defiant Disorder is with these disorders all of us are talking about. Not quite true. But his methods and suggestions and stories are wonderful! His agression worsened. We feared for ourselves. It's horrible being scared of a 4 yo!

He was evaluated again about 8 mo ago by a developmental specialist. She did the CARS test. He was diagnosed with Mild Autism. He went on Risperdal (an anti-psychotic) for his agression and has shown such wonderful improvements.

I am homeschooling my dd who is ADD and 6 (she is non-medicated). I also do all David's therapy and schooling. He is behind in speech and social skills by 1 yr. We do a lot of pic stories about social skills and acceptable behaviors using MAS on http://www.do2learn.com. I have nothing to say but wonderful things about the company, their customer service, and the program.

Another WONDERFUL book: Helping Your Child with Autism Spectrum Disorder (a Step-by-Step Workbook for Families). Emphasis on Families! I talks about getting your ASD child to be a part of the family team. It wants all members of the family to contribute. I have begun using it and already see improvements in our family and my ds. Oh, and wonderful sign videos: Signing Time. Ds knew sign but never used it. When we used it, it helped him become more vocal. After buying the 1st Signing Time video, he now signs as he talks.

And we always got the comments too about David just being a boy. One ped even accused me of wanting meds because I couldn't handle my 2 yo son. I gritted my teeth and told him I wasn't leaving without the referal to ECI. My MIL also said, he's just like dh. What I got from that is that my husband is also special needs!

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Old 01-08-2007, 04:22 PM   #82
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Re: parents of autistic children

my oldest son is high functioning autism . and oppesitional defiant conduct disorder, and autism spectrum, also non verbal learning disabled...
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Old 01-12-2007, 08:37 PM   #83
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Re: parents of autistic children

theres lots of us here!

right now I am havign issues with Caden eating.. he just isnt eating anything ( other than his favorite and non healthy foods) and when we encourage him he just makes himself gag and throw up I am giving him instant breakfast in the mornings and when he doesnt eat his meals.. but I know he isnt gaining any weight, just wondering if you all have suggestions
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Old 01-14-2007, 07:34 PM   #84
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Re: parents of autistic children

MAMA..I have been in the same boat with Riley for years. He eats about 5 foods. He is extremly picky and he is underweight. He was sent to the GI for failure to thrive and other GI issues. Does Caden receive any OT services? Riley gags like that too so it sounds sensory related to me. We have been working intensely with a wonderful OT to help him eat. Do you think it is certain textures he has a problem with? A good OT could really help with that. We were told that the next step is a feeding tube if we can't get him to eat..so I am hoping to find some answers myself. PM me if you want to chat about it more...it is very upsetting and most people don't get it.
mamma....
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Old 01-28-2007, 08:36 PM   #85
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Re: parents of autistic children

if you Christian, iwanted to share a link that I got from our director this weekend. http://www.findinggodinautism.com/fgia.htm
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Old 01-29-2007, 09:26 AM   #86
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Re: parents of autistic children

Today on The View (abc), the entire show is dedicated to the topic of Autism. I'm watching it now.
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Old 01-29-2007, 10:29 AM   #87
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Re: parents of autistic children

I missed the show today but wanted to add My 2 1/2 yr old Daughter is Mid Level Spectrum. She started Speech therapy 2 1/2 weeks ago and I can already see improvements...shes very visual so shes picking up things quickly after we show and Direct her. She actually had a tea party with me and pretended to slurp her tea! :lol:

She has Sensory integration Disorder as well and I am currently going through the referal process to get her evaluated for OT.
Shes an AWEFUL sleeper lately and barely sleeps at all during the night, she went to bed at 11pm and was up at 5am this morning and wont go to bed till about the same time....have any suggestions? My husband said he wants to look into getting her a sleep aid but I dunno.
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Old 02-21-2007, 01:47 PM   #88
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Re: parents of autistic children

I just wanted to say HI. My DS is 6 and also mildly Autistic.
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Old 02-22-2007, 12:41 PM   #89
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Re: parents of autistic children

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Originally Posted by joyce View Post
I missed the show today but wanted to add My 2 1/2 yr old Daughter is Mid Level Spectrum. She started Speech therapy 2 1/2 weeks ago and I can already see improvements...shes very visual so shes picking up things quickly after we show and Direct her. She actually had a tea party with me and pretended to slurp her tea! :lol:

She has Sensory integration Disorder as well and I am currently going through the referal process to get her evaluated for OT.
Shes an AWEFUL sleeper lately and barely sleeps at all during the night, she went to bed at 11pm and was up at 5am this morning and wont go to bed till about the same time....have any suggestions? My husband said he wants to look into getting her a sleep aid but I dunno.


to you mama..I have been there with DS. My DS also has SID like your daughter. Does she crave deep pressure? There are a few games you can paly before bed. here is a link (hope it works)http://www.coping.org/intervention/s...vyactiviti.htm

some are for teachers, but lots are very helpful for kids with SID to held them relax and sleep..we have had great response from the hotdog game.
Also, have you tried wraping her tightly in her blanket or a heavy blanket on her to provide deep pressure? This has worked for my guy . We even have him wear spandex under his clothes and this has helped.

Hope some of that is helpful.
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Old 03-07-2007, 05:07 PM   #90
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Re: parents of autistic children

wow...I had no idea there were THIS many of us on here. My 2 older children have higher fuctioning ASD. My oldest is moderate, middle one is mild. With both SP & OT therapy BOTH girls have come a LONG way this past year. to all of you b/c I know the struggle all of you go through to just get thru one day at a time. dh is also a marine and is currently deployed. HOW do you explain that to an autistic 4 yr old when she SCREAMS for daddy??
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