Ty and I had a fight today. The kind that brought me to tears and left me really sad. It's a fight that we'll have a lot as parents of a daughter with special needs and one that will never go away. It's a fight not with each other but with the outside world, and in today's case was with our daycare. It's a fight for Leah, to give her the same opportunities as other kids, to have others accept her for who she is, and to be comfortable with her disability. It's not easy. It sucks. It's what we have to do. And so we fight.
We have been pushing our daycare to move Leah out of the infant room and into the toddler room. She should have moved 2 months ago, but she's still spending her days with the babies. So today I think we both reached our breaking point and got frustrated. Their concern, which is totally legitimate, is that they want to make sure she is safe. She'll be in her wheelchair with a roomful of other toddlers who like to push and who don't have boundaries or social graces. We see her being a little bored and think she needs to be with her peers who are on the same level with her cognitively, mentally and socially. If she wasn't in a wheelchair, she'd be moved by now. And so we fight.
Ty and I both had a conversation with the daycare director today about Leah, and we both understood his point and appreciate that he's doing his best to keep our child safe. I think we're just losing a little patience in how long it's taking for her to get there. She'll be in her wheelchair soon (more on that in a minute), and I have a feeling she will absolutely love it. It will put her up higher than she sits in the zip-zac and more at eye-level with other toddlers. We see all the benefits of her being with her peers. They see a wheelchair and a child who need extra care, and they will be faced with something different than they've seen before. I can understand their concern. I can also see that my daughter needs more. And so we fight.
Usually when I'm at work, I can focus on my job and think about Leah only intermittently throughout the day. I wonder how she's eating and if she's napping, but I generally don't worry about her. Today I thought about her a lot and missed her more than normal, and I couldn't wait to pick her up and squeeze her tight. How can I protect her and prevent her from ever feeling discouraged? How can I teach her to keep fighting? I suppose I have to keep fighting and hope she learns that she's worth it... and hope someday she doesn't have to fight as hard.
Now on to more fun and exciting news. Leah already has a zip-zac. Her full-size wheelchair has been delivered to the medical supply company here in town for modifications and should be in our home by early June. Yesterday we got another really cool piece of equipment, called a dynamic stander. We saw a little girl at the roller skating party using this and of course Ty was drooling all over it! It's a stander, kind of like what we have, but it is on wheels so she can stand and roll! We put her in it yesterday and she went crazy. She was rolling all over the house and we could tell how excited she was to try it out. Last night after dinner we brought it outside and she rolled to the end of the driveway to wave to all the cars driving by. It's a much different sensation to be fully upright and tall instead of sitting down. However it is a big bulkier than her zip-zac and barely fits through our doorways. Ty thinks we should save $20 every month so we can fix the baseboards and walls that are going to be destroyed over the next couple years with her wheels. Oh well, a small price to pay for a little girl's independence.
Just in the last couple weeks I've seen an incredible transformation in her mobility. She can successfully wheel around the entire house, from the kitchen to the bedrooms and back. (Have I mentioned how much I love our 1-story house??!!) She turns on a dime, which is pretty impressive to watch. Neither Ty nor I can figure out how she learned to pull with her right and push with her left at the same time. We also are amazed at the coordination it takes to maneuver a wheelchair, especially the turns. You use your right hand to turn left, and vice versa. She can make it down a fairly long, narrow hallway to our bedrooms and goes pretty straight, something that just a few weeks ago ended in tears halfway down because she got stuck and then got frustrated. After PT this week, her therapist told me I probably didn't need to bring the zip-zac anymore, since she's pretty well mastered it. I will bring the wheelchair once we get it so she can teach Leah how to get in and out of it. The therapist is also still working with her on getting up and down from high places, like the couch. Today, Leah tries to go down face first, but we're trying to teach her to get off backwards, something that is a little difficult because she can't feel anything until her butt touches the ground. It takes some spacial awareness and also her trusting herself that she can do it.
All in all, PT will probably wrap up sometime mid-summer, at least for a while, as all of her goals will be met by then. We will still come back from time to time when Leah needs help to figure something out. I think about her being totally independent, and that means she'll need to get herself into bed, into a car, onto the toilet by herself. The things that we do everyday are the same things she needs to figure out how to do too, just in her own way. Luckily she's a pretty smart little girl. It took 2, maybe 3, PT sessions for her to figure out how to do turns. Our therapist told me that Leah will not be a forever patient, but will see her when, like I said, we need help on a few very specific activities. The therapist did say that she would benefit a lot from hippotherapy, which is horseback riding, because it works to strengthen the core. I would love to get Leah on a horse, and I think she would go crazy for it. I love that it could be another thing we would be able to do for her.
I've talked about a bunch of really cool pieces of equipment for her, so I must get pictures up of them. Check back in a few days and hopefully I'll have my act together and show off her awesome new wheels!
