For a little girl who in non verbal, Sadie is very out spoken and she will tell you what is up and what she is thinking, what she likes and what she hates. This is not a new revelation. She has done this since day three of being alive when I tried to hold her and she wanted nothing to do with being held. We have come to learn her likes and dislikes and try to avoid them if it is possible.
Well 7 months ago we went for a wheelchair evaluation. We picked out a fancy, shmancy chair that had all the bells and whistles to it; shocks, tilts, completely comes apart, "light weight" (that's a joke, all wheelchair are heavy), child can face forward or backwards, different colors, hood, add different parts in the future if her needs changed, and lots of room to grow. It gave her great posture and support. The rehab people were going to have to adjust it and customize it just for her because of her tiny size and because of her arch that she gets when she gets mad, but they were confident that they could do it.
Like I said, that was 7 months ago that we ordered this chair. A lot can happen in 7 months. Why did it take 7 months? Insurance. They don't like to pay for expensive items. So they analyze it forever and debate everything. Finally , they agreed to pay for most of it and I had to cover some of it. Whatever! I just wanted a good chair for my daughter since she will be in it for who knows how long. But as I said, a lot can happen in 7 months. In the mean time Sadie's neck has gotten stronger. Sadie's back has gotten stronger. She moves much more freely then she did. She has more control over what she is doing. Don't get me wrong, we still has a long ways to go with strength and control, but she just doesn't need as much support as she did 7 months ago. This is a good thing. However, that means that this chair may not be the right fit for her anymore.
So the time finally comes for us to go and get "fitted" for her chair and bring it home. Hallelujah!! This is fantastic news. However, the closer the appt got, the bigger the knot in my stomach became. This wheelchair, from what I could remember, just wasn't going to work for Sadie anymore. It gave her too much support. Is that possible? Sounds odd, but that's the only way I know to explain it. It had a headrest on it that she no longer needed (plus we found that she HATED this kind of headrest. It is on another chair that we have at home and we had to remove it because of her attitude when we put her in the chair). The wheelchair had lateral side supports for her body, yep, didn't need those anymore because of her control (plus we recently found out that she hated those too, as we would put her in a chair at school that had them. Again we had to take them off the chair because of her attitude). She had this terrible arch that I just couldn't imagine them being able to adjust this chair to stop. She didn't grow in length like they were hoping that she would. I couldn't ignore this knot in my gut. The day before our appt I started making phone calls, tying to figure out if it was too late to back out of getting this wheelchair. I made a bazillion phone calls to the insurance company, supply company, rehab place, her physical therapist, etc. Finally, the consensus was for us to go to this appt and if it really didn't work then I wouldn't sign the papers for it and I wouldn't be forced to keep a wheelchair that didn't work for my daughter. This was good to hear, but the knot was still there.
We went to the appt first thing this morning. I decided that I wouldn't tell them that I was thinking of backing out of the chair. I would listen and watch and see if everything could be adjusted to her and who knows, maybe I was remembering the chair wrong. Maybe they could adjust everything appropriately to her. We began the appt and they started showing me all the awesome things about this chair and after seeing all this stuff, I was hopeful again that this chair would work. Then came the time to adjust and create the perfect seat for her. (Hahaha, oh boy, *shaking my head*)
They sat her down in the chair she started to scream. They looked at what needed adjusted, took her out, and adjusted it. The did this several times. Every time she screamed. There was nothing making her happy. She arched and arched and screamed. I'm pretty sure she was telling them exactly where they could go and to take the chair with them. Lol. Finally, they (there was 3 of them) just stopped, looked at the chair, looked at each other, and became pretty quiet. You could tell they really didn't know what to do next. I finally spoke up and said that I kind of had a feeling that this was going to happen and that I wasn't opposed to picking a different wheelchair and starting this whole, very long process over again. I just needed her happy and comfortable. After some more silence and him hawing around they agreed that they couldn't adjust this chair to be comfortable and safe for Sadie.
I was so relieved that they agreed that this chair was not right for Sadie and they were not going to make me take this chair. I was also proud of Sadie for speaking up and telling them that she hated this chair.Sometimes All the time with a non verbal and cognitively delayed child there is A LOT of guessing; what hurts, do they want this toy, are they hungry, do they want to move, are they uncomfortable, too hot or cold, etc. You know, it's like having a newborn infant, everything is a guessing game. So for the fact that Sadie "spoke" up and voiced her opinion was awesome. It also confirmed to me that I really do know my daughter. I knew in my heart that she was going to hate this chair, and I was right. It sucks that we have to start this wheelchair process over again, but it's totally worth it. Plus, since we have been borrowing a wheelchair from her school that she loves, we already know what kind of chair we are going to purchase and we know she will love it. No guessing game this time. So on Oct 15th we have yet another wheelchair eval to pick out another chair for her (and we are going to eval her a stander for home also). Fingers crossed everything will work this time.
Well 7 months ago we went for a wheelchair evaluation. We picked out a fancy, shmancy chair that had all the bells and whistles to it; shocks, tilts, completely comes apart, "light weight" (that's a joke, all wheelchair are heavy), child can face forward or backwards, different colors, hood, add different parts in the future if her needs changed, and lots of room to grow. It gave her great posture and support. The rehab people were going to have to adjust it and customize it just for her because of her tiny size and because of her arch that she gets when she gets mad, but they were confident that they could do it.
Like I said, that was 7 months ago that we ordered this chair. A lot can happen in 7 months. Why did it take 7 months? Insurance. They don't like to pay for expensive items. So they analyze it forever and debate everything. Finally , they agreed to pay for most of it and I had to cover some of it. Whatever! I just wanted a good chair for my daughter since she will be in it for who knows how long. But as I said, a lot can happen in 7 months. In the mean time Sadie's neck has gotten stronger. Sadie's back has gotten stronger. She moves much more freely then she did. She has more control over what she is doing. Don't get me wrong, we still has a long ways to go with strength and control, but she just doesn't need as much support as she did 7 months ago. This is a good thing. However, that means that this chair may not be the right fit for her anymore.
So the time finally comes for us to go and get "fitted" for her chair and bring it home. Hallelujah!! This is fantastic news. However, the closer the appt got, the bigger the knot in my stomach became. This wheelchair, from what I could remember, just wasn't going to work for Sadie anymore. It gave her too much support. Is that possible? Sounds odd, but that's the only way I know to explain it. It had a headrest on it that she no longer needed (plus we found that she HATED this kind of headrest. It is on another chair that we have at home and we had to remove it because of her attitude when we put her in the chair). The wheelchair had lateral side supports for her body, yep, didn't need those anymore because of her control (plus we recently found out that she hated those too, as we would put her in a chair at school that had them. Again we had to take them off the chair because of her attitude). She had this terrible arch that I just couldn't imagine them being able to adjust this chair to stop. She didn't grow in length like they were hoping that she would. I couldn't ignore this knot in my gut. The day before our appt I started making phone calls, tying to figure out if it was too late to back out of getting this wheelchair. I made a bazillion phone calls to the insurance company, supply company, rehab place, her physical therapist, etc. Finally, the consensus was for us to go to this appt and if it really didn't work then I wouldn't sign the papers for it and I wouldn't be forced to keep a wheelchair that didn't work for my daughter. This was good to hear, but the knot was still there.
We went to the appt first thing this morning. I decided that I wouldn't tell them that I was thinking of backing out of the chair. I would listen and watch and see if everything could be adjusted to her and who knows, maybe I was remembering the chair wrong. Maybe they could adjust everything appropriately to her. We began the appt and they started showing me all the awesome things about this chair and after seeing all this stuff, I was hopeful again that this chair would work. Then came the time to adjust and create the perfect seat for her. (Hahaha, oh boy, *shaking my head*)
They sat her down in the chair she started to scream. They looked at what needed adjusted, took her out, and adjusted it. The did this several times. Every time she screamed. There was nothing making her happy. She arched and arched and screamed. I'm pretty sure she was telling them exactly where they could go and to take the chair with them. Lol. Finally, they (there was 3 of them) just stopped, looked at the chair, looked at each other, and became pretty quiet. You could tell they really didn't know what to do next. I finally spoke up and said that I kind of had a feeling that this was going to happen and that I wasn't opposed to picking a different wheelchair and starting this whole, very long process over again. I just needed her happy and comfortable. After some more silence and him hawing around they agreed that they couldn't adjust this chair to be comfortable and safe for Sadie.
I was so relieved that they agreed that this chair was not right for Sadie and they were not going to make me take this chair. I was also proud of Sadie for speaking up and telling them that she hated this chair.
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