A little piece of heaven

Okay these videos are primarily for the ABR team in Canada to check and make sure we’re doing things correctly.

I have been thinking a lot lately about responsibility. What is society’s responsibility towards children with special needs? What is the role and responsibility of friends and family of children with special needs?

The government, for example, understands that they do have some responsibility to help children with special needs. From an economic point of view, I am sure they realize they have to give families some assitance as, if they don’t, these kids are more likely to end up in institutions which is more costly than keeping the kids at home and leaving most of the responsibility to the parents. So the government helps with medical expenses, they sometimes help with therapies and equipment. So there is some recognition that society and the government has to help these children and their families.

I have noticed there are so many movements and non-profits and support systems set up for people with cancer. If a child is diagnosed with Leukemia, for example, other people step up and help, they offer to cook and clean, they offer to watch the other kids. There is a lot of support in general. But the difference is, leukemia is a condition that can be treated. If the kids get better, the leukemia ends and life goes back to normal.

Brain injury never ends. Perhaps some of the less affected people recover and don’t have to continue with therapies etc. But kids that are more seriously affected don’t just “outgrow” or “recover” from cerebral palsy. It is a life long battle.

So I wonder if this is one of the reasons there is so little interest and willingness to help? Maybe people are only able to muster up compassion for short periods of time, and can’t bear to be in it for the long haul.

I wonder when Nathan was first diagnosed in utero and when he was first born we had lots of support. People thought it was a one time battle, and that it was just about him surviving birth, so we had tons of people offering to help. But afterwards, not so much.

So I have just been wondering what the role of community and society is when raising a child with special needs.

It saddens me to see how little support there is. Most of the families that I have met are doing it on their own. Are doing their very very best to make things work for their kids, without the help of others. It breaks my heart.

So I have decided to write more about the daily difficulties of caring for a child with special needs. The catch 22’s that we face, the common and uncommon challenges.

Maybe if people are more informed they would be more willing to help. Maybe what we’re lacking is information.

But maybe I’m totally off base. Maybe our kids are no one’s responsibility but our own and we need to do what we can on our own.

I honestly don’t know.

Amidst my jet lag I didn’t have much concentration to get important things done, so I ended up spending most of today tying up lose ends.

One thing I finished which I am very happy about is getting ALL of Nathan’s medical records in thick heavy duty folders. I figured it’s time to stop chasing paper and I just put it all together in one place. So next time we go to a doctor’s appointment I can just bring the folder and they’ll have everything they need in front of them. I can also collect and add to the folders with new appointments etc. I also started a binder for evaluations and a binder for alternative therapies.

I also went out and got the last bits and pieces that I need to start ABR. We should be ready to go on Monday! I got the little crib for positioning and a pillow to help with his position.

I also followed up on the walkers and it looks like we’re just 1-2 weeks away from having both walkers. Not only can I NOT wait but I am starting to get bummed out about how much time we have lost because of all the paperwork.

I also talked to Hulet Smith from RehabMart.com today about Gtherapy and some of the stuff that he’s doing and was amazed to hear that we’re both exactly on the same page. He’s into the nutritional stuff, he has a mild hyperbarich chamber, he does the doman delacato stuff, and give his daughter gtherapy. He believes that our kids need a comprehensive approach and in his private physical therapy practice, this is what he teaches parents.

Anyways, I am happy at how things are progressing and am just waiting for Nathan to fully recover from his croup. He has been incredibly happy, even if he’s sick, and has really been having good days.

Okay, time to sleep.