A day in the life of a child with CP consists of therapy.
In fact everyday consists of therapy.
When we left Stord we had a Special educator 6 hours a week,an assistant at kindy, a physio and an occupational therapist who we saw twice.
Stord council could never dream of giving Jennifer the opportunity she has here.
It wasn’t the personell that worked with Jennifer, rather the size and scope of the offer.
Jennifer has a special educator 50% (18 hours) of the time in kindy, and an assistant the other 50%.
I’m not allowed to mention their names, or show their faces but if you close your eyes and think of angels you’ll get the picture.
She has a physio, an occupational therapist, who’s been integral in helping us design the extension to our house and making sure we have the right equipment now and in the future.
Jennifer has a music therapist in kindy too.
She has an 18 page training and intergration plan designed to stimulate, teach and develop her motor skills, her understanding and her self belief.
Her goals are simple, like helping clothing herself by reaching through her jumper, or rolling onto her side so she can get more comfortable, or just saying yes or no. Simple, but still within reach.
You don’t get to choose these services or these therapists. I don’t think we could’ve chosen better even if we had the chance anyway.
They all have Jennifer’s best interests at the fore.
And never forget, the therapist’s don’t get to choose the child either, they’re given the child. Tiring sometimes, challenging always!
It’s not all shits and giggles when the child is throwing up, or has diaré or won’t eat or has an epilepsy attack.
But it is rewarding when what you’ve been working on for 6 months finally clicks.
You can see it in their eyes how fond they’ve become of Jennifer, and how fond they’ve become of the children they’ve worked with before.
If it wasn’t for the therapists, our children would not be living at home. That is garaunteed!
Before we moved here, we were told we were going to be in for a hell of a fight trying to get the services in place that Jennifer requires.
In reality, it’s gone exactly as it should.
The media in Bergen hound the Council, and so they should sometimes, they do make some strange decisions!
We’ve been Lucky so far, not everyone is.
Without warning, there goes a part of Mali’s therapy.
Mali’s parents, like most parents are extremely gratefull for the support they’re getting.
But it’s important to stand up and be heard when something that effects your childs already difficult enough existence, is taken so abruptly away.
One of the most frustrating things about the case above is that we parents really don’t have much more energy to fight cases like that.
We put alot of effort in to getting the therapy our kids need and have the right to.
If you can imagine having a very busy job, where your days pretty much fly by and you don’t really stop for lunch……
Then coming home to the same.
Sure the kids go to bed and you may get an hour or 2 to relax.
But generally we don’t, we write out applications, or discuss the weeks meetings, or discuss and choose equipment, or discuss how we’re going to fix the ever growing list of problems knocking down our door, or send complaints about decisions given to our children we know just don’t abide by law.
Somehow we get up in the morning, somehow we get out the door and somehow we come home again in one piece.
And if you think we’re ever going to give up, you can just keep going on thinking!!!
Having said that, you probably wouldn’t want to live in any other country than Norway if you have a child like Jennifer.
Therapy for disabled children in Norway is heavily subsidised.
It’s just a shame that someone sometimes decides he or she is going to cut funding, or remove assistance, or just go out on a power trip!
The greatest thing is the therapy is working.
For us, for Jennifer, for every child that needs it.
It might seem miniscule, it might not even be seen. But it’s there!
She’s communicating back to us verbally, it might only be an uh or an ah or an eeeeeee or even a heeeeeey.
But it makes things a hell of a lot easier to understand her needs.
Just knowing that things are moving forward!
Even if it is one step forward and two steps back…….