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[Guest guest]

Hi,

This is my first time on this site and I'm already thinking I could

spend the rest of the day reading through all the messages - but

alas, my son Sam's video will finish shortly and so to will my 'time-

out'. My husband and I() live in Auckland, New Zealand and we

have a son who has DS-ASD. He will be four in June and was

diagnosed with Autism at the beginning of last year. At the time,

had I known more about Autism, I could have made the diagnosis myself

alot earlier. I had always had a feeling that Sam just wasn't quite

like his peers that I knew with Down Syndrome. Whenever I queried

some of our ongoing issues with various Therapists, they all assured

me they had dealt with other similar children with Down's (now I'm

thinking all those kids may have also had undiagnosed ASD aswell??).

Sam is non-verbal and does very little to communicate his needs. He

certainly lets us know if he's not happy with something, but like

most parents, we have become very good at anticipating his needs and

following a routine usually keeps him relatively happy. We have many

challenges and issues with Sam, but the two stand-out ones are 'Food

and Eating/Drinking' and 'socialising'.

Sam still eats pureed food and basically eats the same three meals

every day. He is not interested in finger food of any type (tasting,

touching, or holding) and gags or vomits (often on purpose) on the

slightist lump or different food. He only drinks milk from a special

cup with a spout, and still requires us to lie him on a pillow and

hold the cup for him. He also has a protein intolerance to chicken

and egg which just further limits the variety of foods we can offer.

All of these food related issues are further compounded by a constant

battle with his weight.

As far as the social aspect goes, Sam is very loving and affectionate

with myself and my husband and some other familiar adults and is

usually Ok with adults if he's with us, but does not like big groups

of people, particularly (young) children. This can make socialising

with a pre-schooler just about impossible as most of time these are

group situations with lots of kids! Last year I enrolled Sam at a

local preschool for a term and even accompanied him during every

session, but Sam would spend most of the time crying and when he

wasn't crying he was using alot of 'blocking behaviour' or 'stimming'

by constantly rolling a ball or something equally monotonous. This

was such a contrast to what he is like when he's at home or in a

familiar environment that I felt he would be better of at home where

he at least interacts with adults. I now pay a support worker to

come for two hours, twice a week and play with him while I have some

time out. He is usually OK if we have friends with one or two kids

visiting us, but is still very unpredictable - especially at other

peoples places.

I have recently checked out two local schools for children with

special needs, but still feel completely overwhelmed at the prospect

of Sam actually having to go to school when he's five. I really

don't know how he will cope, but I guess I'm not the first parent of

a child with special needs to feel this way. The frustrating thing

with a dual diagnosis is feeling like your child just doesn't really

slot in anywhere.

Apart from all that, we recently had what we thought were 'routine'

xrays done of Sam's knees after noticing a couple of boney bumps

which didn't go away. Two days after the first lot of xray's I was

asked by the hospital to bring Sam back in. I assumed they just maybe

wanted another view or something, but was discovered that the

radiologist had seen something unusual and wanted a full body set of

xray's done. After meeting the radiologist, I was told that he, and

two of the top experts in New Zealand (an American Paediatric

Radiologist and our leading Geneticist) had all looked at the first

set of xray's and have not seen anything like it before. They are

unable to tell us anything more and have sent the xray's to some

expert in America in the hope that he may be able to shed some light

on it. Of course in the meantime all the worst scenarios are going

through our minds and this has just placed an even bigger question

mark over what Sam's future holds. I trying not to dwell on it while

we await more news, however the prospect of getting any sort of

diagnosis looks fairly slim. It seems crazy to think that my son has

something wrong with his bones and is the only person in the world

with this particular problem??

Anyway, it looks as if my time on the net is up for today. I look

forward to reading more of your messages and reminding myself that

there are other people out there going through some of the same

things!

Ciao for now

(Proud mum of Sam)

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