"I like your wheelchair!" & thoughts about accepting assistive devices

We were celebrating! We had the wheelchair parked at school for the whole of the first term... and then one day... she rode it and owned it! I admit there may have been some bribery involved (pink lunchbox like her friend, Gia), but at least she never looked back.

Redd Tedd was so excited about the wheelchair that he came home with Sarah-Hope for the weekend! And that happened to be a weekend when we were going camping in the Cedarberg for a friend's 40th. 

We drove in the bus to the Cedarberg and took the wheelchair with. The ground was firm enough there for Sarah-Hope to drive around the campsite a bit with the wheelchair which was great. We had a mobile ramp so also managed to put that down over a little canal so Sarah-Hope could make her way between our site and the next door one.

Kids were running around, some on bikes. A beautiful moment stayed with me when my friend's son, Charlie, came over. This was their simple and beautiful exchange:

Charlie: I like your wheelchair.

Sarah-Hope: I like your bike. 

What I love about young children is that they can see the clear benefit of getting to drive yourself around in a wheelchair. In fact, they want a turn themselves! Sarah-Hope is the lucky one who gets to drive AND who even has a little hooter. But what a lovely problem to have - when people are wanting to be around it.

Adults usually have an automatically sad association with the wheelchair. I can understand this - they can sense the loss it represents. 

I'm always thinking about how these assistive devices are interpreted in the world around Sarah-Hope's world. My hope would be that they promote discussion and inclusion. 

Sarah-Hope's Grade R Teacher, Pam Berry, had an idea about a tablet that Sarah-Hope would start using occasionally in class. She could invite a friend to join in with her by doing an activity on the tablet. That way, the potential for the tablet to separate Sarah-Hope from the class was reduced. This idea has been an important one in designing Sarah-Hope's support going forward in life.

Where does my help come from?

It was so interesting to see Sarah-Hope engage with a new school environment. She was so excited. In her pretend play in the months before, she had been talking about facilitators. She had been driving the wheelchair around on holiday at speed and with joy. And then as a six year old she suddenly enters a new space with new children around her along with a fresh sense of wanting to be one of them. She wants to do things on her own and not need the help of her facilitator. She wants to walk to the hall by herself like the others and not go in a wheelchair. Even if it meant walking on her knees the whole way there and back, a couple of times a day!

 

 

The school mentioned to me that they were chatting to her about it, that the wheelchair and facilitator are part of her story. And she also began to realize, I think, that she couldn't keep up with the other kids. A hard one, but regular part of the grief cycle, acknowledging her losses. But then that resolved. (see the next post on celebrating about the wheelchair).

 

She also had to make the adjustment from the teacher assisting her (which had been the case in the previous little school) to asking her facilitator to do so. I had the same battle at home - I occasionally had someone at home, I would request that she ask them rather than me to take her to the toilet or get something that was out of reach for her. In my mind she had to realize that she needed to accept the assistance that was provided for her - as she wouldn't always be in a position to choose this in her life. And it was important for her to exercise the muscle of asking for help from anyone around her in a way that made them comfortable assisting, even if they were strangers. This ability would help her navigate institutions and unpredictable events. And she improved - from reliance on her teacher only, to including her facilitator and then also friends later in the year. 

 

 

One afternoon we were getting our things together to go for a swim. People usually feel uneasy watching me carry my kids (Sarah-Hope as she needs to be carried, and Libby as she wants to get the same assistance as her sister), as well as their stuff. But because I have often needed to figure out how to get through these logistical challenges on my own, I don't ask for help until I really need it. So one day Sarah-Hope says to me, 'why don't you accept help when people offer'? What a question! And I realized how important it is to model those things which you want your children to catch. Yes, she needs help. But so do I.

As I've pondered much in the last few years, I have come to believe that long term living in interdependent community is the only sustainable solution. Every person deserves to be supported, and have the privilege of strengthening others. Working out what load we should carry on our own, and what we should shoulder with others is one of wise discernment and in my family it changes frequently depending on health levels in particular... and then boundaries have to be reestablished in terms of who does what and how we ask for and receive support. It is not always clear cut. And so because of the amount of support I've needed since becoming a mum, I've wanted to reserve it until I really do need it. My asking for support shouldn't be driven by the immediate response others have when they see me in a given situation. Although sometimes participation in each other's stories can mean sharing not out of desperate necessity but out of the joy of being and doing something together. 

May I model dependence on the Lord's help by receiving and requesting support regularly - and being the Lord's help to others as often, even if its a simple genuine question asked about how someone is or knowing embrace offered with no other words. And may Sarah-Hope know the Lord supporting her through many - and the strength that she can offer to others as well.