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Joined: 20 Nov 2005
Gender: Female
Posts: 7

21 Nov 2005, 7:33 pm

Hi there,
I found this site while looking through and thought that i could chat
and talk about things that have been and are still happening with my 9 year old son and our family.

My son was diagnosed with a heart murmur aged 11 months after lots of visits to the doctor and being told that i was a neurotic mother.
When he went into hospital for tests it showed he had a hole in the pumping charmber (left ventrical) and also his arteries were narrow.

He had open heart surgery when he was 4 yrs old, where the hole was closed and the main artery had a balloon inserted to widen it.
The whole ordeal was terrifying mostly because of the not knowing
what was happening (we ended up changing hospitals)

We were told he would probably need more surgery in 5 - 6 yrs time as his other arteries would need seen to and this time is drawing nearer and im getting worried for the dreaded letter to come.

Apart from his heart problem i felt there was something different
with his behaviour and the way he was with other kids and how he
played etc and after a long battle with his school and teachers and
then having to change his school (they said he was uncontrolable and unteachable) he was diagnosed on 30th september 05 with asperger syndrome.

Now that he has been diagnosed things have been tough with seeing occupational therapist, getting things sorted out with learning support, teaching assistants, educational phsycologist and just trying to get my head round the last 7 weeks.

Anyway, apart from that i have 5 other children aged 18, 16, 14, 12 & 7. The eldest 3 are my stepkids and have been with them over 12 yrs now. We all live toger (yes all 8 of us)

Times are hard just now but i know we'll get through it and just take 1 day at a time.
Hope to maybe be able to chat with some of you about things we're all going through or have been through.

Take care
Julie x

joku_muko
Veteran
Veteran

Joined: 9 Dec 2004
Gender: Male
Posts: 710
Location: Oregon

21 Nov 2005, 7:39 pm

Wow.

Welcome to the board Julie!

Paula
Veteran
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Joined: 15 Feb 2005
Age: 64
Gender: Female
Posts: 728
Location: San Diego Calif

22 Nov 2005, 1:44 am

I fell in love with this poem and have it posted in my Sunday School Class. Wish I knew it when I was in school.So here it is for your boy. "Here's to the kids who are different, the kids who don't always get A's. The kids who have ears twice the size of their peers, and noses that go on for days. Here's to the kids who are different, the kids they call crazy or dumb. the kids who don't fit with the guts and the grit, who dance to a different drum. Here's to the kids who are different, the kids with the mischievious streak. for when the have grown, as history's shown, it's their difference that makes them unique. You've found a good place here. Hope you stay.

jewels
Emu Egg
Emu Egg

Joined: 20 Nov 2005
Gender: Female
Posts: 7

23 Nov 2005, 7:58 pm

Thank you for the welcome Joku,
Hope we might get a chance for a chat sometime soon.
Take care
Julie x

jewels
Emu Egg
Emu Egg

Joined: 20 Nov 2005
Gender: Female
Posts: 7

23 Nov 2005, 8:06 pm

Hi Paula,
Thank you for the reply and i think the poem is fantastic and will show it to my son soon.
I havn't yet told my son about his AS as i want to find out a little more myself as i know what he's like and will ask all sorts of questions till they are coming out my ears and i just want to be able to answer them as much as i can.

As it's only been 7 weeks since he had the diagnosis im still trying to get my head around things and a he's only 9 im finding it hard to tell him.
He's already asking questions why he had to see the communications clinic and last week when i took him to the OT.

I suppose there will never be a "good time" but im really not ready myself to tell him :cry:

I look forward to chatting to you all and hopefully read some much needed advice.

Hope you and your family are well.
Thanx again

Take care
Julie x

I fell in love with this poem and have it posted in my Sunday School Class. Wish I knew it when I was in school.So here it is for your boy. "Here's to the kids who are different, the kids who don't always get A's. The kids who have ears twice the size of their peers, and noses that go on for days. Here's to the kids who are different, the kids they call crazy or dumb. the kids who don't fit with the guts and the grit, who dance to a different drum. Here's to the kids who are different, the kids with the mischievious streak. for when the have grown, as history's shown, it's their difference that makes them unique. You've found a good place here. Hope you stay.