There are so many variations under the term 'autism'.
And, there are so many variations of cerebral palsy.
Dexter's cerebral palsy is spastic quadriplegia
and dystonic quadriplegia.
'Quadriplegia' means all his limbs are affected and
'Spastic' means his muscles can become very stiff and tight.
The 'dystonia' means he has uncontrolled movements of his arms, head and legs.
Dexter's cerebral palsy is severe.
He has been classified as level 4-5.
Level 5 is the most severe, so
it doesn't get much worse than that!
Unfortunately, that means some people put Dexter
in the 'most severe' category and never see him
as a walker, crawler, talker or eater.
Essentially, they give up on him.
We were told Dexter would be on a gastronomy feeding tube.
That's the green tube you see going into the nose or mouth of babies.
As a premmie baby, Dexter had one of these.
We were told Dexter would never breastfeed,
because he hadn't yet developed the sucking reflex.
Man, that was a battle!
There were many tears and much frustration
and hours of trying and persevering...
But, Dexter wanted to feed... and so, he did!
As an older child with a gastronomy tube,
nutrients would be inserted directly into Dexter's stomach.
He wouldn't chew or swallow food.
But, after incredible effort, patience and time on Lenice's part, Dexter is eating chunkier food and is really starting to understand the chewing concept.
He does need to be fed, but he's getting there!
During chemotherapy treatments,
Dexter's chewing and eating development suffered a huge set back.
The chemotherapy drugs caused mouth and throat ulcers,
and Dexter went back to eating pureed food.
Many children undergoing chemotherapy
end up on a gastronomy tube, but Dexter didn't.
The chemotherapy drugs caused Dexter to develop an egg allergy,
and that further complicates what he can and can't eat...
but, this little boy enjoys eating.
That's a huge step for him.
So, we taught him how to roll over.
We push Dexter and help him be his best.
We work every day on his physical development.
And, Zoe pushes Dexter.
She adjusts her expectations each time Dexter
achieves his little steps in the long road to walking and sitting.
And, Dexter pushes himself.
That little boy pants with exertion, he pushes himself that hard.
Dexter's hip surgery caused another set back in his development.
The surgery was needed.
The specialists advised it might take six months
for Dexter to return to where he was pre-surgery.
Six months! That's another huge setback.
Dexter had to learn how to roll over, all over again.
He's much better at doing that already,
but isn't quite where he was pre-surgery.
This determined, gutsy little guy will do it...
It's just heartbreaking that he has to try so much.
Someone once said
'What a special needs child
can do today was once a dream...
a hope, but is now a reality'.
We see this in Dexter....
And so, we continue to push
and encourage and support and hope.
Dexter may have been classified
as level 4-5 spastic quadriplegia and dystonic quadriplegia,
but no one told Dexter!
Life's tough for this little guy
(and that's not even considering the cancer!)
but he is a tough little guy and we'll never give up on him!
This poster has cerebral palsy information,
and an explanation of Dexter
in relation to some of the facts on the poster follows.
- At the moment, Dexter is non-verbal. He has communicated hunger a few times, and we've heard 'off' and "Mum'. When he's in pain, we do hear 'ow' - (ouch without the ch). That one's heartbreaking. We praise him for using his 'words' and hope he will find lots more words one day.
- We hope Dexter doesn't feel pain from the cerebral palsy. Some nights are bad cerebral palsy nights, but hopefully, he has been lucky enough to avoid this. We have heard of children with cerebral palsy screaming in pain while driving.
- 1:2 has an intellectual impairment' - This is a little difficult to assess yet. Dexter's vision impairment and lack of words makes it tricky to tell..., but Dexter shows understanding. He has a fun sense of humour. He is cheeky. He learns instructions quickly and already knows that a kiss on our cheek will most likely see him getting his way. I think he dodged this one, too.
- He does have a vision impairment.
- He does have trouble sleeping.
- He does have bad saliva days. Some medications seem to make this worse, and his Bowen Therapy Massages may help to reduce his drool. While he is still in a spitting for fun stage, its hard to determine just how much control Dexter has over his saliva.
My sister Knows (I have cerebral palsy)
The Good Pain (Therapy and exercise)
My cerebral palsy OT gear
My Staring Sign
My Staring Shirts
Cerebral Palsy - Blah!
CP Doesn't Stop Me Understanding 'Stuff'
My CP and Feeding
CP Awareness Day - 2013