Tuesday, 24 April 2012

Holland, Beirut -whatever...

15 years in life with disabled child has settled down somewhat – to a predictable routine and with regular respite life is good. It is a hard slog – something that respite puts into perspective when it is marvellously easy to do this and that with the girls.

He is happy and his frustrations are minor. It is relatively straightforward to cater to his needs and wants. He is demanding like toddler – but get it right and life is smooth. Though “transition to adult services” will be the next big hurdle in terms of decisions and no doubt heartache...

But getting to know two families recently has thrust me back into the early days... remembering and reliving the unknown and the traumatic times. With a child struggling to make sense of their world and parents and professionals struggling to make sense of him. Deep in the valley of a new and scary world...Losing friends. Not fitting into the “norm”.

But gaining new ones - who understood. Gradually finding a way up to the sunny slopes above... the search to make sense of it all.

One family has a five year old with undiagnosed probably genetic disorder. He has come a long way in last two years and gives lovely smiles but when round theirs one day he very neatly reminded me of the times over the years that Ix has smeared poo - the completely oblivious look on his face “so?” and the struggle to clean up. Also the many months Ix had undiagnosed constipation and horrendous overflow – poor boy. We recently went out on a lovely day out to local farm, with Ix at respite and older siblings on the trip there were many helping hands and he seemed to really enjoy the day.

Another family, a work colleague, has a three year old with Williams syndrome, another microdeletion. She is a beautiful little girl, friendly and sweet. But not talking, yet. The unknown of where she will be on the spectrum of her syndrome.... Their search for the right therapy and coming to terms with the fact that this was “not what we signed up for”.

Welcome to Holland indeed but they sure feel like it is Beirut. Though progress recently has seen a glimpse of light thru the fog...we went with S. to a kids rock show. Ix settled with his ipad and later enjoyed the music. S was scared at first and it looked like it could be a disaster...one of those “tried but failed” opportunities...and yet... gradually, she warmed to the rhythm and at the end was dancing on the stage with the other small people. It was lovely to see.

“You are the only person apart from X who knows she has problems..”

I remember that. Colleagues asking : “how’s the baby?” “is he walking yet? Talking yet? “and finding it so hard to say “well no. He isn’t. “

“Coming out” of the disabled closet and saying yes, my son has special needs. Yes he is disabled. And no he isn’t going to get over it like your cousin’s in-laws sister’s best friend’s child who didn’t say word til they were five but now is doing PPE at Oxford.... Shocking a group of parents worried their “neurotypical” child might not get into their first choice of primary school “well it is a different ball game for me anyway, my son will be going to the special school”. “oh, yes. Moving swiftly on...”

And - finding support .

On the internet. People in UK, in America, all over.... with similar undiagnosed children.

I had so naively thought that you only had to worry about Down syndrome! After all, that was what the doctor was worried about when early scans were dubious...

These people became my friends... still are.

Then real life meet ups – people who belonged to the club.

And I turned to books. I have always read.

"What to expect the first year" quickly found its way to the charity shop. My son merited more than a slight reference to the non-typical children in the few pages in one chapter at the back of the book, surely??

Now I turned to the books with the cured-by-diet/special programme/horses/dogs: these I threw out, frustrated. I enjoyed some saccharin chick-lit biographies in a fluffy kind of way but they promised a happy ending which consisted of a cure or a non verbal child talking or other miracle. Somehow I was seeing this was not going to happen...surely the ending did not have to only mean "cured"?

I devoured Greenspan (floor time, makes sense); the out of synch child (sensory issues, makes sense);

I found a cheap copy of The Hypotonic Child which showed Ix to a t.

Special children, challenged parents – the stages of grief; makes sense...

And two biographies which didn’t seek to sugar coat or suggest my child with the right love/care/therapy would change to “normal”:

Growing Up Severely Autistic: They Call Me Gabriel by Kate Rankin told me that life would go on, and I wasn’t alone in having a child with severe and complex needs.

And Jane Gregory’s Bringing up a Challenging Child at Home: When Love is Not Enough too showed the challenges of a complex child without sugar coating. And that if decisions had to made about residential placements – well it could be for the best, for the child...

I was so thrilled to “meet” Jane online recently! http://jgregorysharingsstories.blogspot.co.uk/

Later, with an autism diagnosis I again threw out the “cure” books and leaned towards reality:

George and Sam by Charlotte Moore (the 2007 first edition - but read the 2012 version) and

Joe: The Only Boy in the World by Michael Blastland which explained theory of mind and the logical thinking of a child with autism (when you say to an autistic child look! And he looks at your pointed finger – rather than the object you pointing too –well it makes sense...) better than any text book.

oh and Expecting Adam - love this book

Above all the connections with people – in real life and online who have helped along this journey.


Anonymous said...

Thanks for the links, have read a lot of them but will Amazon "Expecting Adam"

Jane Gregory said...

Thanks so much for the mention of my book & blog Natasha. Great post that all parents of undiagnosed children will relate to. I love your book selection too &, as an avid reader myself, have read some of them. Another one I recommend is 'Marie's Voice' by the remarkable Michelle Daly, who worked as a carer for a child with learning disabilities & ended up taking her home. http://www.amazon.co.uk/Maries-Voice-Michelle-Daly/dp/0863273408