Shabby Miss Jenn

Friday, October 22, 2010

Seeing is Believing

Believe it or not, I've finally gotten around to posting some videos of Wade in his wheelchair.  I have a bad habit of putting off things I think will take a lot of time.  But really, how long does it take to upload some videos to YouTube and then post here???  So, without further ado, here we go!

This first clip is of Wade at therapy, the day he received his chair.  He was a little apprehensive, but he hadn't sat in one in 6 months.  Yes my friends, that's how long it took for insurance to process his chair!!!

This next clip is of Wade showing off his new skills to our friends.  We are so lucky to have such a wide street that is not at all busy for him to practice.  Because, it seems like A LOT of practicing is in our future!

This last clip is a little long, so feel free to do some fast forwarding!  I would edit it a bit, but since it's taken me so long to even get these posted, I think I'll save that for another day!

Wade got his chair the last week of August.  When we first tried it in the clinic, we had the head sensors set to just turn right and go forward.  Once we got the chair home, being the anxious parents that we are, we decided to give Wade the ability to go left, right, and forward.  We quickly learned that with these options, Wade's favorite thing to do was to spin in circles!  Also, even though we live on a wide street, Wade always seemed to find the curb!  Thank goodness for the remote stop that we hold onto for emergency situations.  After talking to our wonderful therapists, we realized that all the directions were just too overwhelming to start out with.  So now, the only option he has is forward.  Once he learns to stop and go on demand, we'll add right and left back.

It's now been about 2 months, and he seems to be getting the hang of it.  We take it to school everyday, so he has a lot of opportunity to use it.  I can't wait until he is a lot more proficient with his chair.  It's going to give him so much freedom!

Saturday, October 2, 2010

An Open Letter to All Professionals

Taken from
Thank you for putting into words what so many of us feel!

An Open Letter to All Professionals


New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

Friday, October 1, 2010

A Disorganized Mess

As you can tell by the dates on these blogs, I'm really not doing very well at recording events. A lot has happened in the past month. I have a running dialog in my head of what I want to write about, but those thoughts never seem to make it to this blog. Quite frankly, my life is just a disorganized mess!

However, I do have hope!!! About two weeks ago I went to the doctor and was prescribed medicine for ADD. My world inside my head has completely changed! I have so much more focus, clarity and motivation. I can see the light at the end of the tunnel instead of completely shutting down because the tunnel seems too dark. I've taken one nap in the past two weeks! It's amazing because sleep is my favored mode of escape and denial.

Unfortunately, medicine is not the cure all. The medicine has given me clarity and a sense of positivity, but now I have to teach myself how to gain control and organize my life. Just because I'm feeling better doesn't mean I automatically know how to do this. I am so used to living in a state a chaos, that this is new territory for me. I LOVE the thought of being organized, but I just can't manage to get there. Hopefully I'm beginning to walk down a new path that will finally bring a sense of calm to our household. I recently purchased two books: Unclutter Your Life in One Week and ADD Friendly Ways to Organize Your Life.

So, my goal for this weekend is to start reading the books. And with any luck, I'll get at least one post up about Wade's new wheelchair!