Well by all, I mean us families of these remarkable little children that decide they just have to have the latest designer genes and do things completely different than other children.
|Hide and cringe|
Breaking the mould is the way ahead, they insist.
Who wants to be a sheep, they smile.
It is my way or the highway, they state.
Gabe, it seems, has decided that the lifestyle he wants is one that is more suited to the son of shipping magnate.
I'd tell him to get back to his roots, remember his hardworking fore-fathers and to reign in the expensive tastes except it is not a back stage pass to latest concerts, a limited edition pair of trainers or even a gap year in Monaco that he is after.
It isn't actually about what he wants either but more about what he needs now he is on the cusp of turning three and hasn't quite managed to get to grips with independent mobility. In fact, Gabe hasn't quite mastered any of the things that we hoped as yet:
- sitting by himself
- standing without an aid
- playing appropriately with toys
- feeding himself
But he is trying so very hard. And the good news is that there is so much more that we can do to help him to try and achieve more. Don't get me wrong the NHS has provided some great equipment and we have access to some fantastic therapists but as we all know it is not a bottomless pit and the waiting lists are long. Meanwhile Gabe's brain remains sponge-like waiting on specialist intervention.
That is why (whilst cringing behind our jumpers) we have decided to start fundraising for him. The first is a quiz night at our local parish church but as he grows and his needs change we will do more events in the future.
For details of this fundraising event go to https://www.facebook.com/events/588372144542773/. The aim of this event to try and raise money for the following:
A child's first bike is a rite of passage but for a child like Gabe who has hypotonia (decreased muscle tone or floppiness) there is not a chance that he could even sit on a normal bike. Add in his learning/processing problems, he just wouldn't know how to make it work. This is why companies like Tomkat Trikes are a godsend. They custom make trikes for children with learning and physical disabilities. Apart from the fact that every little boy should get to feel the whoosh of the wind blowing in their hair as they ride through the park, the specialised trike ticks so many boxes for Gabe:
- It will help him develop his leg strength
- It will help him learn cause and effect - he pushes, the bike moves
- It will aid his sensory processing problems by giving him vestibular and proprioceptive feedback that other children get from walking, crawling and running
- It will give him vital social interaction with his peers and siblings
- And as importantly, it is fun.
Sadly the trike comes at a specialised custom-made price of £1400.
Gabe's brain is taking its time. Once up and running, it is easily distracted and very good at forgetting what it has just learnt. Although we don't know the cause, the myelin (the insulating layer that forms around nerves) in Gabe's brain is delayed so the nerve messages from the brain to the body are slow, delayed or sometimes just like to nick off for a sneaky fag before coming back to deliver their message.
It is improving all the time, but specialised (expensive) private therapies can make it improve faster (the NHS just can't afford them). The Brainwave Programme rests on the theory of neuroplasticity and uses qualified and experienced staff drawn from the mainstream fields of physiotherapy, psychology and education. All Brainwave therapists have also received additional training in cognitive and communication techniques.
This private service consists of a two-day assessment in a Brainwave Centre followed by reassessment visits every four-six months. An individual exercise programme (with equipment) is set for Gabe to do at home for 10 hours each week. A number of his SWAN friends are on the programme and have seen amazing results.
Now he is nearly three, Gabe has entered a grey zone in terms of toys. Lots of baby toys are actually too baby-ish for him and some of them he just can't do because his fine motor skills are very delayed due to tactile defensiveness (another sensory problem). He is light years away from the toys of his peers, but yet play is essential to his development. A catch 22.
Step forward special sensory toys, step forward special prices.
And Gabe is so very good at banging.
Fundraising for our child isn't something we have done lightly (it is quite embarrassing and not quite top of the list of things I'd like to do before I am 40) but it is an essential evil.
I want his brain to develop now.
I want to unlock his potential now.
I want him to be the best he can be now.
I want to get him walking (or work hard trying)
I want to get him talking (or work hard trying)
I want to get him eating (or work hard trying).
I want to be able to sleep knowing that I am doing everything I possibly can do to help this boy of mine.
So if you are a friend (or even a stranger) from Birmingham and fancy a jolly good night out come along. It will be great to see you.
If you are a friend from beyond the 2nd city, dig deep in your cupboards for that manky bottle of wine or old box of chocolates and send them along. I'll make sure the quiz goers are so drunk, they won't care what their raffle prizes are.
I still believe in this boy so much and with your help maybe he can be anything he wants to be.
|A famous cyclist |
(this is him trying the trike BTW)
|A famous swimmer|
|A concert pianist|
|A champion runner|
|Or just a little boy trying his best.|