What it's like to be the parent of a child with a learning disability. The blog was created in 2005 and discusses anything to do with Down Syndrome

Sunday, 22 March 2015

Stan's a teen; and his own person

Stan's latest heart check went well, so why did they ask us to come back in 18 months, rather than two years? Cause for concern? No; it's because he's being sent off to the adolescent unit. Because he's now a teenager. Then, when he's old enough, he'll be discharged from Great Ormond Street and go off to another hospital. 

We've seen the same cardiac consultant since before Stan's operations in 2002. We send him and the surgeon Christmas cards. I said in my book that not a day goes by when I don't think of all staff at the hospital and thank them for saving Stan's life. 

So, the latest news is a challenge. He'll be off. Away from a children's-cardiac-unit-safety-blanket to somewhere unfamiliar. 

And it's such good news. In 2002 we couldn't think of this day coming. I've said before, that for the first year of Stan's life, Down's Syndrome was the least of our problems, because of his heart. And just now, Stan and I have discussed a range of options for tea tonight. He's having exactly what he wants. But the important thing is that we had the discussion. And he's 13. And he's his own person. 

I feel like we're moving into Phase Two. He now knows the difference between right and wrong. He won't always do the right thing, but at least he knows that he probably should do that right thing. 

It's just that as he grows older Stan needs supportive (and yes, firm) parenting. I've just been re-aquainted with a former colleague from the travel agency. I haven't seen her since 1993 but she found me on Facebook. She always used to laugh at my jokes. So I've cracked a few more on Facebook personal message. She shouldn't encourage me. I've always been a joker, so providing that firm and supportive parenting should be a doddle, heh? 

Especially as, while I'm writing this, Down's Mum is rightly pointing out that I should be attending to said parenting, as described above. It's probably a hopeless case. 

But I'll give it a go. Welcome to the teen years, Stan. 





Sunday, 1 March 2015

Down's with the kids - the book ~ Written and audio

“This is my brother. He can be cute; he can also be a little shit”. Down’s Bro. 

Written version from Amazon

Audio version from Audible - Instructions on how to download 

Down's with the kids: The life and times of Stanley Matthew Palmer. By his Dad. 


It'll take about an hour to read Steve Palmer's book about his son, Stan and extended family. Stan has Down's Syndrome and Steve's book is an honest account of life with this "endearing, infuriating, loving and frustrating" boy. If you’re a parent with a new diagnosis of Down’s, this book’s for you; when you’re ready. Because it’s warts-and-all; maybe you’ll prefer it that way. There's also the memory of a night in Cardiff in 2002 from this Stoke City-supporting family. From school days to holidays, from clich├ęs to relationships with siblings, Steve offers you family life - with a child with a learning disability - as it really is; hard work, worth it and at times, a bit of a laugh quite frankly. 

Reviews: 
'On 5 October my sister in law gave birth to Cooper, a wee Downs baby. I want to be a support to them and a good uncle to Cooper. This book has helped me learn loads about a condition I previously knew nothing about.'

'Fantastic, no-nonsense insight to the highs and lows of life generally, but just with an added chromosome. Recommended reading for anyone - not just the family and friends of people with Down's Syndrome.'

'I read this in one sitting: I just couldn't put it down. I loved Steve's observational wit combined with his music and film analogies. Looking forward to him writing more.'