Reduced capacity, slight retardation, possible learning disabilities. What the heck does that mean? I keep stumbling across words like these when I try to read up on Abbe’s syndrome.
I asked Solveig (the 22q11-doctor, you know), when I met her at the 22q11 society meeting, about this.
– How common are learning disabilities in the 22q11 children, Solveig?
– I’ll be honest with you. More or less all of them have problems. Approximately 50% are classified as retarded to some extent, but all of them do have problems with learning.
Did I really want to know?
24 March 2006
18 March 2006
Annual meeting.
It was kind of creepy. The 22q11 society had their annual meeting. It felt unreal.
One of the lecturing rooms in Queen Silvias Childrens Hospital had been put in order for the meeting, there were coffee and sandwiches, fruit and buns. All as nice as can be. But I felt like a UFO.
This is a small society run by a number of enthusiasts, with relatively small funds. After having gone through the obligatory paragraphs of an annual meeting, like elections for various posts, the chairman’s report, economic matters and such, it was time for the information part and the questions. And this was when I started feeling awkward.
I think I was the only one there with a child as young as Abbe. The questions brought up felt extremely far fetched. And unreal. I mean, Abbe’s not like their children, is he? My little piglet wont be facing difficulties like those, will he? No, this must be wrong.
During the break I just stood there listening to the others talking. They all seemed to know each other. With a sandwich in one hand and a cup of coffee in the other I stood – numb – listening to discussions about special schools, children asking questions on why they’re different, ADHD, Autism, you name it. It all melted in my head and formed one giant lump. A not so pleasant one.
Afterwards I talked to Solveig (the 22q11-guru) who had also attended the meeting. I told her I had trouble relating to the whole thing. She answered “Of course you do. Just take one day at a time. I think you’re brave for showing up here today.”
I’ll drink to that.
One of the lecturing rooms in Queen Silvias Childrens Hospital had been put in order for the meeting, there were coffee and sandwiches, fruit and buns. All as nice as can be. But I felt like a UFO.
This is a small society run by a number of enthusiasts, with relatively small funds. After having gone through the obligatory paragraphs of an annual meeting, like elections for various posts, the chairman’s report, economic matters and such, it was time for the information part and the questions. And this was when I started feeling awkward.
I think I was the only one there with a child as young as Abbe. The questions brought up felt extremely far fetched. And unreal. I mean, Abbe’s not like their children, is he? My little piglet wont be facing difficulties like those, will he? No, this must be wrong.
During the break I just stood there listening to the others talking. They all seemed to know each other. With a sandwich in one hand and a cup of coffee in the other I stood – numb – listening to discussions about special schools, children asking questions on why they’re different, ADHD, Autism, you name it. It all melted in my head and formed one giant lump. A not so pleasant one.
Afterwards I talked to Solveig (the 22q11-guru) who had also attended the meeting. I told her I had trouble relating to the whole thing. She answered “Of course you do. Just take one day at a time. I think you’re brave for showing up here today.”
I’ll drink to that.
16 March 2006
13 March 2006
Club activities.
Abbe is a member of two clubs, or societies. Or, rather, our family is. We became members of the Heart childrens association as soon as Abbe had undergone his first surgery. His obviously had a heart condition and it felt natural to join.
The other one was different. The chromosome aberration they told us that Abbe had, felt unreal and very distant. I mean, there are no signs of it yet, he’s to young for it to be noticed. Having said that, he has got very long fingers. We noticed that as soon as he was born and later found out that it’s connected to the 22q11 syndrome. But other than that, there are no signs.
We’ve been hesitant on what we’d actually get out of a membership in the 22q11 society. Besides, we try to maintain some sort of normality in our lives and not just hang out with other parents of sick children. Enough is enough. Does that strike you as odd?
We finally decided on joining, anyway, and their annual meeting is on saturday.
I’m going.
The other one was different. The chromosome aberration they told us that Abbe had, felt unreal and very distant. I mean, there are no signs of it yet, he’s to young for it to be noticed. Having said that, he has got very long fingers. We noticed that as soon as he was born and later found out that it’s connected to the 22q11 syndrome. But other than that, there are no signs.
We’ve been hesitant on what we’d actually get out of a membership in the 22q11 society. Besides, we try to maintain some sort of normality in our lives and not just hang out with other parents of sick children. Enough is enough. Does that strike you as odd?
We finally decided on joining, anyway, and their annual meeting is on saturday.
I’m going.
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