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As today is World Down Syndrome Day I thought I would take the opportunity to revise this blog a little and make it a celebration of who Luke is and what I have to thank him for.

Luke is having a fantastic time at college and we are constantly being blown away by his vocabulary and ability with language. The other day he told us that he was shaved by one of his support workers under the tutelage of his key worker. Where did that come from? I can't remember ever using the word. He is constantly curious about language and word play. He is far better at joining in conversations aorund the table and telling us his awful jokes. Although there is hope, I think they're getting a bit better. Unlike mine.

My whole involvement with I Love Thunder was due to him being invited to take part and me tagging along as chauffeur. All my teenage dreams of being in a band came true because of Luke! We are able to communicate musically. We can pick up various instruments and make some noise. We can sing terribly together, although Luke is now taking lessons at college and hopefully will be able to pass on a few tips in my direction. We have played on stages all over the place, as far away as Oslo. We are still trying to work out our our text exchange is going to be put to music. Clandestine Archways.

We have cycled on our tandem for many a happy mile. Not so much recently, as I'm a bit fragile, nothing to do with Luke. It has taken us round Richmond Park for coffee and ice cream on many an occasion. We stopped and watched all sorts of things going on. The boats on the river. The polo horses warming up as we pass Ham House. The struggle up the hill just after Ham Gate, especially when it's the first ride in a while. The whizz across the top to Pen Ponds, when we go so fast it feels as though nothing could catch us. Fortified after our coffee and ice cream we climb up past the Ballet School and then race down the hil towards Sheen Gate trying to get airborn when we hit the speed bumps! 

He loves travelling and visiting new places. Loves visiting old castles and churches. He loves trying out new food. He eats mussels. YUK. 

His curious daily routine whilst at home. The balance of computer time, DVD time, music time, family time. Him falling asleep on my shoulder as we watch a movie together.

He is not able to travel independently at the moment although he is being close shadowed whilst walking around Brighton. When I say that, he leads the way and makes decisions about when to cross the road and which way to go. His support staff have been brilliant in feeding back to us. 

In the midst of all this, yesterday I took Luke along to see another doctor about his ongoing absences or temporal seizures. I was expecting to talk to him about having an ambulatory EEG which I thought was the reason for our referral. However , after viewing out video evidence, he thought that Luke would be better off controlling his seizures with Lamotrigine. I was sort of fine with that, he explained that this would reduce the risk of anything happening to Luke if he had a seizure whilst crossing the road, for example.

After the appointment Luke and I headed off to Brighton so he could return to college. Whilst on the train I thought I would look up the drug and see what it entailed and what side effects there were and whether there was any history of use with people with Down Syndrome. After all, this is a question of getting the balance right and how it could affect his quality of life.

I also wanted to talk to Anne before Luke started to use the drug. It is just so scary and I'm a little overwhelmed at the moment. Just reading through the list of side effects and then trying to imagine how Luke would cope with understanding what was happening to him is bad enough. 

Whilst we were chatting Luke came up with the expression Day Dreaming Disorder as being a good description as to what was going on. Now that might be a gross over simplification but that's the way he sees it. So for the time being we're just going to try and find out a lot more and talk to other parents that might have been through a similar process. 

The whole dilemma is to come up with a solution that allows Luke to continue to grow and develop both intellectually, spiritually and physically. I would hate for that spark to be obscured by potential pharmaceutical side effects. How would he be able to determine when any of these were present? He's bad enough at telling us when things aren't right at the moment. 


Nick Radclyffe writing about Life at EalingHELP on 20 March 2018

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