Monday, April 07, 2008

Ground Gained

I noticed him right away. He was sitting quietly in a big overstuffed chair, reading a book. I had wandered into the children's book section of one of a huge bookstore looking to pick up a 'young adult' book for a friend.

The image of a child curled up in a big chair reading a book is a cozy one to me and it always evokes a smile. This time it did more than that, I teared up. The little boy had Down Syndrome and he was just quietly sitting reading, pages turning slowly, concentration on his face, words touching his lips with movement. It's been a long time waiting for this. Waiting to see a child, like him, reading in a place like this.

There really is little more to today's blog than this image. Nothing happened. No one said anything. I never saw his mom or his dad, though I glanced around at the other adults in the area and wondered. I saw several other children, some running and restless, others quiet and entranced. But I couldn't detect who belonged to him. It was as if he was put there, by the store, as decoration, as a symbol of the power of words and the ability of all to enjoy.

But to me he was a symbol of so much more. He was a symbol of where we are now, a symbol of where we have come from, a symbol of ability, if independance, of ground gained. Rushes of emotion ran through me. I didn't know what to do with them. I was born into a time of hopelessness and rejection. A time where children with differences weren't expected to learn, didn't expect to be taught. A time where children with differences didn't have homes they were placed in them. A time where children with differences didn't read in overstuffed chairs, they sat in bare walled wards.

I wondered what words touched his lips and made them move. What the story was that he was reading.

And I wondered if he realized that his story, the one that brought him here to the bookstore, to curl up and read, was more fantastic, more unexpected, more thrilling than any word on any page of any book that I've read thus far in my life.

I saw a child, sitting in a chair, in a bookstore ... reading.

Imagine that.

10 comments:

Ros said...

My daughter who has Down's Syndrome, could read before she could talk properly.

At 17 she left school with 6 passes at GCSE including a D, and 2 Es. All taken at a single sitting and the D was in French. She is English of English parents.

Her lowest grades were for double science (physics, chemistry, biology and earth science) and English Lit. But still she passed. She has better qualifications than many children who do not have a learning disability!

She hated English Lit - say compare and contrast to her now and she will still groan.

Then later she took another GCSE at college and got a C. All are academic - cookery does not feature - and she reads for pleasure.

Yet in England at the time she was born she did not have the automatic right to go to mainstream school. 15 years ealier she would not have been entitled to go to school at all ...

Ros

Kei said...

My son has been reading words and spelling since he was 4½, and now 3 years later, in 1st grade, he has a higher reading level than many in his classroom. William is currently the only child with Down syndrome in his school (pre-K through 6th, appx 130 students); the same school his 5 older siblings attended. I have always acknowledged Signing Time (www.signingtime.com) with giving him the skills needed for literacy and communication, for it was words from that series that he began spelling and reading.

This weekend he was curled up on his Daddy's lap, happily reading books. I glanced up and smiled as William sounded out new words and my husband turned to me and whispered, "Thank you for my son. I never thought I'd have a moment like this when we found out he might have T21."

WheresMyAngels said...

Dave, I work with adults with disabilities and also have two teen daughters with disabilities. I have been so lucky to meet individuals with down syndrome in their 50's that were raised in loving families and were believed in. One lady I have worked with took ballet as a child. Both her parents were doctors and can you imagine the guts it took back then to get their child Ballet classes. It would of been unheard of. Another Gentleman I work with can read and write in cursive so very well. I have met so many older adults whose parents boke the mold back then to help their children and then their children broke that mold. Unfortunately, I have never met any of the parents but one, because they have all passed away. But the one man with Down syndrome whom could write cursive so well, would spent time with his father in his assisted living apartment on the weekends and holidays. His father was in his 90's and the love just poured out of him for his son. I always wonder if I would of been that brave parent back in their day. I sure hope so.

As for my girls, one doesn't read very well, but the other one drives me insane with not putting all of MY books back after she reads them!! lol

Anonymous said...

Gabe, now almost three years old, is drawing "T"'s (which stand for "Dada", my husband's name begins with T). He also knows some words by sight, and he is the only toddler I know who would rather read than play with toys.

When you first described the boy sitting in the bookstore, I immediately saw my Gabriel. I'm sure sometime in the future, I'll be seeing that particular image, in person, myself.

Parents, like me, thank the brave and loving parents such as the ones that wheresmyangels talks about. It is their stories, and the successful lives of their children, that light the path for me and others new to parenthood of a child with special needs.

shiva said...

Interesting. The stereotypical image of the cognitive profile of people with Down's is kind of the opposite of that of Aspies and Auties like myself - really good (possibly even better than neurotypicals) at all the non-verbal/empathic stuff, but severely impaired in the verbal area - but ros's daughter sounds, with the "could read before she could talk" bit, like she's hyperlexic, which is a typical Aspie trait.

A lot of autistic bloggers have expressed envy over how "positively" people with Down's get portrayed as opposed to autistic people - i'm not sure about that myself. I kind of suspect that the reason Down's kids (and adults) are often assumed to be severely verbally impaired is because of the physical effect of the difference n face shape on their speech - and that obvious physical difference is also both why there isn't any "cure Down's now" or "inside your Down's child is a normal child struggling to get out", as analagous with what there is targeted at autistics, and why they get stereotyped as being "all the same" (in cognitive-profile terms). I bet people with T21 are actually as varied in spread of abilities as any other group of people...

Ros, what's your daughter up to now?

jypsy said...
This comment has been removed by the author.
jypsy said...

Shiva said: A lot of autistic bloggers have expressed envy over how "positively" people with Down's get portrayed as opposed to autistic people - i'm not sure about that myself.

According to the Canadian Down Syndrome Society "Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention."

The CDSS also ran a large ad in the Globe and Mail, expressing their ideal that in the future, ignorance will be cured, not Down syndrome.

Compare that to The Autism Society of Canada's view of autism & autistics. Drop over to The Autism Society of Canada's website. Top of the page,. ASC is supporting a Run (and helping to decide how any funds are distributed) by a guy who is promoting us (autistics) as a "burden for the rest of their lives" to our parents, family members, teachers and social support groups. He wants to "promote a unified and effective approach in Canada to dealing with Autism, and ultimately preventing it or finding a cure."

This attitude, that we are a "burden", "a national crisis", in need of extensive behavioural intervention (ABA) is the message the ASC has been promoting for years. They support others who describe us as "devastating", "a parents worse nightmare", "a plague" etc and never have I seen them take anyone to task for promoting this kind rhetoric or spreading misinformation as the National Down Syndrome Society in the US did recently.

I wouldn't call hyperlexia "a typical Aspie trait", in fact, it was the autistic in this household, not either of the 2 Aspies, who read before talking.

Thanx (again) for this post Dave.

Ros said...

Hello Shiva

My daughter does have significant speech and language issues which are a source of great frustration to her. She usually knows what she wants to say but can't always put the words together.

One reason she read before she talked was because she didn't really begin to talk until she was nearly 4. We had two word 'sentences' and putting two concepts together in signs earlier but she didn't buck the trend re delayed speech.

As to what she is doing now - well she lives in a community and is incensed because the charity who run it want to close it. She told me I have to "be on her side" and "do something!" Her contribution was a speech in Manchester last December and another to our local county big wigs (senior social services people, county councillors etc) last November.

She has her own website
www.kylie.cswebsites.org for anyone interested. We haven't got round to re-recording the message and she is 23 now not 21 ...

You will see that she gives speeches and presentations to anyone who will pay her - a fee and expenses for her and me as she cannot get to places unaided. We get to do a number of these each year which I don't try and get - people just ask us. She also works for an organisation called Clear - www.clearforall.co.uk which does some very good work.

She has to read her speeches because of the aforesaid speech and language issues but hopefully we will be working on that this year. Sometimes though we don't manage to get together often enough for her to have enough time to practise and one speech she did cold. She writes out her ideas when I tell her the topic, then we brainstorm and sometimes I suggest things she hasn't included. Then I put the words together and she edits. She always changes something!!

She always starts her speeches to professionals in French - to shock them out of their complacency. It amuses us both.

She is totally uninterested in cookery, gardening, taking care of animals and the usual options given to people. Doesn't in fact like getting her hands dirty. So I help her find work she enjoys though she would really like to look after children with problems. She reckons she understands them better than most people.

Ros

Ettina said...

From what I've read, the speech problems in DS are a combination of physical differences (hypotonia, large tongue, etc) causing poor articulation, as well as poor auditory short-term memory (which is theorized to be why many DS people leave out the small words in sentences, because they ignore them in order to focus on the meaning). Reading bypasses both of those to a certain degree. Many DS people are fairly visual and both reading and signing tend to be easier than speech as a result. Both of those also help speech development, in somewhat different ways.
Regarding what Dave Hingsburger is discussing, I remember reading about parents who were told they could not take their disabled child to school, because the child couldn't be taught. Some of these parents started their own schools for disabled children.

Ros said...

Hello Ettina

I understood that many of the problems including the large tongue (if present - my daughter's is a fairly normal size) is due to the middle third of the head being smaller possibly due to cessation of growth at critical stages. The fact that many babies are smaller than average (mine was 5lb 10oz) suggests growth is indeed a factor.

The tongue, coupled with the hypotonia, makes it difficult to get words out with good enunciation but in most cases can be overcome with good help - including tongue gymnastics. John Down (eponymous man of Down's Syndrome) knew that 150 years ago. Amazing man.

Anyhow the staccato speech where they focus on the important words and ignore the little words can also be overcome. My daughter uses all the words because when she was little I made a big point of emphasising them so she did take notice.

I don't think the speech problems are simply to do with short term memory issues. There is a cognitive aspect too or since memory can be called a cognitive issue perhaps I should say another. My daughter often knows what she wants to say but can't put the words together. Eventually when you have questioned her a while, listened to the single words she can generate and put it together for her she says an exultant YES!!

For ordinary conversation mostly she is fairly fluent but if she gets stuck she needs help to get unstuck.

But that takes time, patience and commitment which a lot of people don't have unfortunately.

There is an enormous spectrum in Down's Syndrome - both personality and abilities of various kinds. They are most definitely not all the same -despite the stereotyping.

Ros