Friday, November 5, 2010


First off let me apologize if my last post offended anyone in anyway shape or form. As I am sure most of you realize that is never ever my intention.

Secondly I want to let everyone know that I do not view wheelchairs as a "dead end." The post was never intended to be a bashing session for wheelchairs.

Toby received his first wheelchair around 1 1/2 and we loved that thing. We loved watching him go through stores and get around and play. It was an amazing life line for us.

However, with the progress Toby has made we would see going back to the wheelchair as a step backward because of how well he is walking now. Not that the wheelchair is in and of itself a bad thing just seemed like going backward.

My main goal in writing is to encourage all of us as we face the unknown, therapists, doctors, family members and friends. I look at us as a team raising our children and pushing them to be the very very best.

I see us as truly Redefining Spina Bifida. Not just wearing a shirt that says it. I see us as redefining the charts, the therapists, the things are children are told they cant do. I see us doing those things, breaking the charts, leaving the therapists in awe of our children's strength.

I hope that clarifies a few things for everyone. Again, I love Toby's wheelchair and I will always love his chair. It gave him mobility when nothing else would. The post was never intended to be about a chair but about potential.

Feel free to contact me with any questions or concerns about ANYTHING that shows up on the blog. I always want the chance to clarify or apologize.


Meilani said...

Thank you for the clarification. I think that you are doing wonderful things. Keep up the great work.

Colleen said...

I get what you're saying. I totally agree we should not limit our kids by what a therapist or a doctor says, and I totally agree that if you don't love your therapist, dump them! Because a good therapist can--for some kids--mean the difference between walking and not walking. I think this is true for my Nate.

I think a lot of us moms struggle with the wheelchair issue. We want our kids to be pushed as far as they can be physically, and at the same time, we want them to be as independent as possible, and for some that means using a wheelchair. For some kids, that is a fairly easy distinction. When you're dealing with full leg paralysis, by all means, get that child a great chair and work on standing programs and RGOs, if appropriate. And then you have some kids who just need some AFOs and they are off and running. But it's the majority of kids who are in between that present the gray area. Which is best--to get a wheelchair at a very young age so they can be independent, or don't get a chair because it might slow the progress toward walking? I'll be honest, I have no idea what the right answer is, and I have a feeling there isn't a right answer across the board. It's just what is right for that particular child with his or her particular personality and the family's particular viewpoint and lifestyle. But I know what it felt like when Nate was way behind in all the gross motor stuff, and I could have benefitted from someone giving me hope, telling me to not give up and if I didn't like the therapist who wasn't getting anywhere with Nate, I should find a new one.
I'm so glad you shared that therapy session, because I'm celebrating with you!

Kari said...

thanks for the encouragement colleen. i needed it! :)

Gretchen said...

Kari... I SO agree with you!! My son did not have a therapist that pushed him, and we live in a very rural area, so changing wasn't really an option for me... But I went online, I researched, I worked my A$# off, and can you imagine HOW SUPRISED my son's therapist was when he WALKED into her office??? She had written him off 18 months earlier as a "non walker", but I knew God had bigger plans for him :) And mind you Nat was FOUR YEARS OLD when he finally started walking! Now at 10 years old, we walk most of the time, but he does have an awesome chair for long distnaces (because he is so much more fun to be around when he is not exhausted!) and for when he has wonded feet (which he manages to do so often...) and I am jsut fine using it when it is needed, but I am also fine pushing him to his potential too :)

It is a fine line for many, and I believe a very personal choise too. I could not have managed when he was 3 without the chair (and having a newborn too) but at 8, 9, and 10 I am willing to push him harder and work long hours with him... it is what works for your family!

You do an amazing job here and I appreciate finding you so much!