Should we follow a “typical” timeline?
Should we listen to our mommy gut?
Should we be the catalyst for getting new equipment?
Should we assume our medical team and therapists are the experts, and wait for them to bring it up?
The art of pushing, respectfully
In our case, I often push a little. I ask a lot of questions like “how will we know when she is ready?” and… “would it be worth trying one out just to see how she does?” and… “when the time comes, what is the process for getting this new device?”
I always want to know WHY. I have this problem in all areas of my life, but it serves me well when advocating for Lily. Why, you might ask? (see what I did there? ) Well, if I understand why someone believes what they do, I can better figure out how to influence them to give Lily what I think she needs.
When I convinced myself Lily was ready to start working with a posterior walker, I persistently brought it up in conversation with her Physical Therapist. Respectfully, but persistently. Slowly, I made my case for why I thought she was ready while little by little figuring out how the process works. Turns out they had a loaner we were able to use before ordering one for her ourselves!
Don’t get me wrong, I listen to her medical team’s opinions, and I consider what they say very thoughtfully. I compare their opinions to what I know about my child, and try to figure out for myself what I think is “right” for her. At times, I have decided to wait a little bit because they made a good point and I realized it was a bit too soon. However, in other cases, I simply felt I knew my child better, and wanted to do what I thought was right for her. These are the cases when I persistently and respectfully pushed.
Is she ready for crutches?
At our last clinic visit, we asked one of the doctors when they thought Lily would be ready to start trying out lofstrand crutches (cuff around arm with hand grip). Their response was “definitely not before she is at least 3 years old.” They went on to add that with starting preschool, they think staying in the posterior walker for a while beyond her third birthday would be safer because she will be less stable with crutches on the playground.
She was 2 1/2 at this time, and their answer bothered me a lot. I couldn’t shake my dissatisfaction because from what I saw, she seemed ready. And truthfully, it was getting harder and harder to motivate her to work during PT, because we weren’t introducing anything that new or exciting to her.
If they knew her like I do, they would see how she muscles the walker around, how she uses it to run and jump and hop, and how she can walk with it while balancing on her forearms instead of holding onto the handles. They would also realize that the walker actually makes most playgrounds really difficult because the wheels get stuck in the mulch and she uses all her energy to simply move from one place to another. In my mind, crutches = freedom to enjoy the playground more like a typical kid. Yes, there is a risk she may fall, but all kids have that risk… and we wouldn’t put her out there with crutches until she is able to use them in a stable way.
As luck would have it, a month later another child outgrew her lofstrand crutches and passed them down to Lily. We asked her Physical Therapist if she could simply start introducing them to her to gauge interest and ability, and she was up for it… so we did!
It will be a while before she is ready to use her “sticks” independently, but that’s ok. We follow her lead. Sometimes she’s really into them. Sometimes she’s not. It’s not a race, and we don’t push her when she seems frustrated or uncomfortable – we just work on something else. I simply want her motivated to keep making progress in order to help her continually gain new independence. I want to give her extra freedom as soon as she is ready, and not hold her back simply because of what is considered typical.
In all honesty, she probably will be three before she uses the crutches independently because it took her a good 8 months of working with her posterior walker before she was ready to use it on her own. However, if we had waited to introduce them, we’d still be struggling to keep her motivated. Having the “new” crutches has gotten her much more engaged and wanting to do physical therapy again. So, in her case, I think it was the right call.
Helping kids be kids
As I was reading a few articles on this topic today, I came across the following quote: “Beyond clinical practices and theory, early intervention is ultimately about one goal: allowing children to be children, regardless of disability. Through the right mobility technology, at an early age for those children who have the properly assessed abilities, we know that early intervention fosters emotional, cognitive and social growth. This creates not just a child’s mobility, but his or her health and happiness.” Source: Mark E. Smith, Mobility Management
I love the idea that what is “right” is what allows our children to be children, regardless of their disability. The right timing for getting a particular device is different for every child, but as long as we are guiding them towards health, happiness, and simply enjoying being a kid, I think we are on the right track.