Welcome to Illinois

Getting it wrong and telling it right

Posted in Attitudes to disability, Campaigns, Personal, Screening by Matt at WelcometoIllinois on January 2, 2010

My older sister is currently expecting her second child. Being a few years older, and therefore statistically more likely to have a child with Down’s syndrome, and also having seen from our experience that it pays to be prepared, she is likely to have a combined test in the coming weeks to assess the possibility that my new niece or nephew has DS.

However, this post isn’t about my sister or the next addition to our family. Its about the health care “professional” who told my sister that she shouldn’t be overly concerned there is a history of Down’s syndrome in the family since the link is via her brother (me) and Down’s syndrome “is passed down the mother’s side”.

The ignorance revealed in that statement is staggering. To be clear, Down’s syndrome can be the result of inheritance from one of the parents (who would not show any signs of chromosomal abnormality) but that form of translocation occurs in only 1/3 of 4% of cases of Down’s syndrome, and in any case can be inherited from either the father or the mother.

This information itself would only be relevant in my sister’s case if G had Translocation Down’s syndrome, which he doesn’t. But then it sounds like the health care worker concerned is having trouble with the basics, let alone the difference between Trisomy 21, Translocation and Mosaic Down’s syndrome.

It is frightening to think that someone lacking a basic understanding of Down’s syndrome is providing advice to expectant couples.

It is also a timely reminder that the Down’s Syndrome Association’s Tell it Right campaign involves a petition to the UK Prime Minister to provide high quality information in the diagnosis of Down’s syndrome. For those in the UK there are just five days left to sign the petition.

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“He’s a little Down’s boy isn’t he?”

Posted in Attitudes to disability, Personal by Matt at WelcometoIllinois on December 30, 2009

Since we received the diagnosis that G would be born with Down’s syndrome one of the things I have feared most, to be completely honest, is the comments that would be made by complete strangers. I have read and heard some horrendous stories of strangers feeling the need to pass comment on the fact that a child has Down’s syndrome – offering the parent pity or unwelcome advice (or insults).

It took 15 months, but recently while out Christmas shopping I had my first experience of someone commenting on the fact that G has Down’s syndrome. Not just anyone, but the type of complete stranger I fear most: the kindly old lady (KOL).

I am used to be stopped by KOLs while out shopping since they are naturally attracted to babies/children and their favourite variety is one with ginger hair. They swarm around J’s “orange hair” (as he like’s to call it) like bees around honey.

Attracted as usual to J’s personal Belisha beacon this particular KOL quickly moved on to G and his lack of gingerness before surprising me by asking “he’s a little Down’s boy isn’t he?”

The question was so matter-of-fact that I could only respond in the same way. “Yes he is,” I replied.

The KOL told me all about the group of teenagers with Down’s syndrome that goes to her local swimming pool and “really enjoy themselves” (a bit random, a bit patronising but she meant well and I was still too disarmed by the fact that I was talking to a complete stranger about Down’s syndrome to do anything other than smile and nod).

“So he’ll have a few challenges when he’s older,” she continued, before adding something about how he didn’t seem too badly effected. I don’t really remember what I offered in response to that. Again her tone was so matter-of-fact that the comment seemed entirely reasonable thing to say.

So that was my first experience of discussing the fact that G has Down’s syndrome with a complete stranger in public. Something tells me it won’t be our last. Especially if we keep going shopping with J.

A year ago today

Posted in Personal by Matt at WelcometoIllinois on September 17, 2009

…almost to the minute, a certain little boy was born. What a wonderful year its been.

Developmental milestone

Posted in Personal by Matt at WelcometoIllinois on August 30, 2009

G just shoved his first thing (his hand) into the video recorder.

You won’t find it in Gina Ford, but in my experience shoving things in the DVR is a critical modern developmental milestone, following fascination with mobile phones and preceding obsession with computer keyboards.

I’m not entirely sure why we still have a video. We never use it and the last time we tried it didn’t work. Time to get rid, I think.

In more traditional milestone news, G has developed this really cute bottom-shuffling technique based mainly on rotation. It’s not very efficient but it gets the job done. He’s also getting really good at standing with a little support. It wouldn’t surprise me if he by-passes crawling entirely.

Down’s syndrome is awesome

Posted in Ability, Attitudes to disability, Genetics, Personal by Matt at WelcometoIllinois on August 26, 2009

Adjective: awesome
1. Causing awe or terror; inspiring wonder or excitement.

As I was sat watching G feeding himself his lunch the other day I was suddenly struck by a realisation of how fascinating Down’s syndrome is. I’ve written before about the scientific genetics of Down’s syndrome, and I’ve also written a little about G and his development.

What occurred to me, thinking about these two aspects together, is how biologically fascinating Down’s syndrome is. Here’s this little boy sat in front of me and every single cell in his body is different from mine, and yet for the most part he is no different from me or any other human being.

He can sit up and feed himself; he is learning to communicate and can say Dada and Mama and also a variation on his brother’s name; he is close to crawling and standing with support. He’s maybe a little slower at some things than others, but isn’t everyone? Don’t get me wrong, I’m not ignoring the negative effects of Down’s syndrome, but I do think it’s fascinating that they emerge in quirky little differences rather than great big ones.

He is fundamentally different from other babies, and yet fundamentally the same – and that is something that is not only difficult to express in words (I realise this post may not make much sense) but is also very hard to understand from the outside.

That explains why most people (me included) faced with a diagnosis of Down’s syndrome respond with terror and fear. It also explains why for most people faced with bringing up a child with Down’s syndrome, those feelings quickly turn to wonder and excitement.

The education dilemma

Posted in Attitudes to disability, Learning disability, Personal by Matt at WelcometoIllinois on May 22, 2009

The Guardian has published another interesting article about Down’s syndrome, this time about the question of inclusion within mainstream schools.

According to the article mainstream schools are increasingly demonstrating reluctance to make the necessary arrangements to help include children with Down’s syndrome.

“The Independent Panel for Special Education Advice (Ipsea)… which gives legal advice to parents whose children have special needs or disabilities, says three times as many children with Down’s syndrome have been refused a statement of special educational needs in mainstream schools this year compared with last.”

The issue of inclusion has been on our minds recently after the matter was covered in Channel 4’s Born to be Different, which follows the lives of a number of children with disabilities.

The most recent update saw the parents of a boy with Down’s syndrome realising that at the age of nine his learning difficulties were such that perhaps it would be best for him and his ongoing social life, to be educated in the future in a school that is specifically designed for his educational needs.

That decision matched with our early thoughts about our hopes for G’s education. Depending on his abilities we would like him to be included in mainstream education for as long as seems appropriate. However, if there were signs that he would be happier in a ‘special school’ as and when the delays in his education become more pronounced I would have no problems in making that change.

That is not an attitude shared by all parents of children with Down’s syndrome it would be appear. In the Guardian report one girl’s parents have reluctantly given up their “moral crusade for inclusion” in the face of reluctance to provide her with occupational and speech and language therapy.

While I would currently disagree with the idea that a child’s educational requirements should be the subject of a “moral crusade” it would also, unfortunately, seem that it is getting increasingly difficult to have the choice to include a child with Down’s syndrome.

Gillian Bird, director of education and information at Down Syndrome Education International, says more children with the chromosome disorder are being told they don’t need speech and language therapy, according to the Guardian, while Bob Black, education information officer of the Down’s Syndrome Association, says that ensuring that occupational therapy is on a child’s statement has become “increasingly difficult”.

“Schools are digging their heels in,” Black says. “We are getting the sense that schools, already overburdened with work, are feeling they have enough on their plates and don’t want to make adjustments for this group of children as well.”

Happy birthdays

Posted in Personal by Matt at WelcometoIllinois on May 13, 2009

We were so busy celebrating J’s 3rd birthday yesterday I forgot to wish Prince Vince a Happy 3rd Birthday too. Happy Birthday Vince.

All clear

Posted in Personal by Matt at WelcometoIllinois on March 27, 2009

The good news is that G’s six-month heart scan shows that everything is fine and he doesn’t even need to go for any more check-ups. We were pretty confident he was okay given how strong he is but you never know. The even better news is that in just a few hours I will be boarding a plane to head back to London to see him and his Mum and his brother. Can’t wait.

Happy World Down Syndrome Day

Posted in Personal by Matt at WelcometoIllinois on March 21, 2009

As previously mentioned today is World Down Syndrome Day, marking 50 years since the publication of Professor Jerome Lejeune’s discovery that an extra copy of chromosome 21 was responsible for the syndrome identified by John Langdon Down.

wdsd_logo_550

I’m not entirely sure how one is supposed to mark World Down Syndrome Day, and there are no events planned for the UK anyway, as far as I can tell, but it is somewhat fitting that I will be spending most of the day on a flight to California, the state I was physically located in when I entered the metaphorical state of Illinois as we received the news of G’s diagnosis.

As it happens the anniversary of that day falls on the last day of my US trip and is also the day G is scheduled for his six-month heart scan. Obviously I would rather be present for such an important occasion but rather than wait for another appointment we decided to go ahead with the scan while I am away.

Obviously I am hoping that I am not awoken by another late night phone call. I don’t want to tempt fate by saying any more at this stage.

Adjusted expectations

Posted in Attitudes to disability, Personal by Matt at WelcometoIllinois on February 12, 2009

I was thinking about the issue of acceptance or patronisation and mascots on the way into work on the tube this morning and have refined my thoughts a little. My point is this:

When we found out G had Down’s syndrome I began adjusting my expectations for him. This was hard to do, and sometimes remains so, but over time I have accepted that my expectations for G are not *lower* than those I have for J, they are just different.

Sometimes when I let my mind wander I imagine J one day being a professional football player, and if I get carried away I maybe daydream about him playing for my team, Southampton, or even for England. (I assume all parents do something similar).

As J grows up and we find out what he is good at and what he is capable of my hopes for him will adjust to fit his capabilities.

When I daydream about G I imagine him one day playing football for a team of people with Down’s syndrome or other learning disabilities, and if I get carried away I maybe daydream about him competing in the Special Olympics or representing his country in a similar event.

Similarly as G grows up and we find out what he is good at and what he is capable of my hopes for him will adjust to fit his capabilities.

What I don’t daydream about for G, however, is that he sits on the sidelines of the school team for years before someone eventually decides to give him a token five minutes in the last game of the season.

If G wants to be part of a team in that way I will of course support him, and if they do give him a token chance – whatever the motivation – I will of course be happy for him and proud of him. But I can’t help wanting so much more for my son. G’s achievements will be limited by Down’s syndrome, but they should be defined by it.