Re: I am back again, anyone remember me???

[Guest guest]

Hi ChickieMom, (Sorry, I forget your first name and you didn't sign it...

I am sorry you are in such turmoil. As I said in an earlier post,

sometimes I feel lucky that the autism is so blatant for us; there are no

questions. Note the word sometimes..... I can't say whether or not your

little guy has ASD or not. Getting another eval is a good idea. My

friend's daughter has many autistic characteristics, but I don't believe she

is autististic. She is WAY too social and appropriately so. As I recall,

in order to have the asd label, you need to fit into three

categories.....Communication, repetitiveness, and social. Maddie had high

scores in all three. I would discuss this with the developmental ped who

will do the testing. I know that Dr. Stanley Greenspan feels that many kids

are being over'dx'd. He believes they have something called multi-system

neurological disorder. Apparently, he came up with this term due to the

fact that so many kids were getting the PDD-NOS label which seemed too vague.

Here's a quote from his book Children with Special Needs:

" We have worked with a number of children diagnosed with autism or PDDNOS

between the ages of 18 and 30 months, who, now older, are fully communicative

(using complex sentences adaptively), creative, warm, loving, and joyful.

They attend regular schools, are mastering early academic tasks, enjoy

friendships, and are especially adept at imaginative play. We have

introduced the term multi-system neurological disorder to characterize

children who have communication problems and are perseverative but can relate

or have the potential for relating with joy and warmth " .

Not trying to add fuel to fire....just food for thought. My friend really

believes her daughter has asd, but she isn't even remotely like Maddie.

Certainly, ALL children are different, and that surely applies to kids with

DS/ASD as well. However, you just can't convince me or my dh that our

friend's daughter has asd. Not only is she very social, she's quite

communicative. She does not have much language, but she uses what little she

does have, very appropriately. And if she can't find the word, she knows how

to get her message across and she recognizes that she needs someone else to

get it for her. As far as I'm concerned she's missing major components of

two parts of the criteron. I've heard very wonderful things about DuPont.

Hopefully, they will be able to give you some answers!!

{{{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}} and keep us posted!!

Donna

[Guest guest]

Hi. I also thought had ASD, but she wasn't dx'd with it.

Anyway, we hadn't been in for her yearly check-up in over a year

(she'd been so healthy). So, when we finally had her blood drawn and

tested we found out she had Grave's disease (hyperthyroid). Some of

the symptoms of this are rapid heart rate which then leads to

fatigue, head aches, blurry vision, etc.... always wanted to

be alone to just watch her movies. She wasn't cooperative. Was

having a hard time at school (laid on the floor and refused to do

what they asked). She quit saying words that she previously knew,

she quit telling us when she had to go to the bathroom,

etc....Anyway, she's been on her med. for Grave's disease for only a

little over two weeks now and is sooooo much better! She's laughing

again, playing with her toys and interacting with us and her brother

and sister and the kids at school. She's only been back to school

since Tuesday, but has gotten great reports every day!

I re-read this and it seems pretty confusing, but I hope you get the

picture. I don't think is Autistic anymore. I think she just

couldn't tell us how lousy she felt and this could have been going on

for over a year.

I think we're on the right track now.

Hope this helps,

>

Hi I have been not posting here for about a month, maybe longer. I

> think i am in denial about the ASD. But in my heart I don't believe

> my son is autistic. I have wrestled with this for awhile now. He

has

> some of the behaviors yes...licking, obsessive, agressive, hard

time

> with change. But do these constitute a ASD diagnoses? I am at such

a

> loss. We are going to be getting him evaluated again at the end of

> this month at Duponts with a behavioral/developemental doctor. My

son

> does not have a lack of empathy, he does so well in so many areas?

> couldnt he be just OCD? (obsessive compulsive disorder?) Some days

i

> think, yea he must have this but this week i have been sick and my

> little one will check me for a fever cover me up and give me a

kiss:)

> I don't want to offend anyone here thats not my intent but what

> REALLY constitues a autism spectrum diagnosis? I am so lost. Could

he

> have some other sort of problem?

>

> His behavior lately had been better, less agression and accepting

> change much better. Being more cooperative. I dont know what bough

> about the change but i welcomed it. Some days it was a joy to be

with

> him again (is that a terrible thing to say? ) but little by

little

> this week i see him going backwards again...and there seems to be

no

> reason WHY???

>

> I am trying to figure this all out. If he REALLY is ASD, then i

don't

> want to spend my life in denial but if hes not then it means i

gotta

> find out what the problem is.

>

> We tried to meds that made him worse, paxil and luvox. He was manic

> on it for the first few days then he would eventually slide into

more

> agression then he shows off the meds. So no meds at all right now,

am

> very nervous about trying others. on a light note his behavior

seemed

> to improve after starting him on some vitamins , B complex and

> vitamin E....we also still try the epsom salt baths. hmm now i

think

> about it he hasnt had for one about a week and he's not sleeping as

> well, maybe thats an idea???

>

> well have been reading here and would like to get back into

posting.

> hope people remember me and ideas and advice would be appreciated.

> take care

[Guest guest]

Marie is that you? I remember the chick part! LOL Sorry you are having a

hard time. I think it's really hard to see our kids the way others do, but I

will always follow my instincts. I don't believe Seth is Autistic either,

but there is something more than Downs. But for now the label gets him what

he needs, so I'm not rocking the boat! LOL Please write again and let us

know what happens with the 2nd opinion?

Gail, Mom to; Seth-4 DS/ASD/PDD/PICA, jo-8, Becky-10, -23, Jen-25,

Grandma to Errick-4

and wife to -my hero

[Guest guest]

Hi

I remember you, but I dont' recall your name.

I think we all go through what you have described. When the psychiatrist

first told me Matt had " Autistic Behaviors " , I thought he was nuts and

told him so. I asked everyone I could think of- he was going to a full

day, inclusive preschool where there were 2 other little boys with full

fledged autsim. Their mom hired a private teacher to go with them,

" helping' them in this setting. This teacher told me in no uncertain

terms that Matt was NOT autistic, and since she had lots of experience

with Autism, I believed her-for a short time. As time went on, and more

and more of the behavior, the regression, aggression, insistance on the

same, side glancing, etc... none of it went away. He looked more and more

different from other kids with Down Syndrome. Not that everyone needs to

look alike, but Matt is different. Very different. I really think,

especially with our kids, that it takes a while for this diagnosis to be

fully manifested.

You are going about this is the right way-getting full evaluations from

knowledgable people. Remember, autism is a word. You son doesnt' change

because of a word. He is still who he is, you can just now look at some

other, possibly more effective methods for teaching him. It can explain a

lot of his behavior. Matt also has periods of time that he is more " on "

and can be sympathetic. I think these are more learned responses to

certain stimuli. But he does try. The Down syndrome seems to " soften "

some of the autistic charactertistics and the autism seems to change some

of the things that kids with DS usually do. Any way you look at it, he is

still the same boy you had, but it can be a hoop to jump through to get

more services that he needs.

Good luck

We will be praying for you from here.

mary S

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