Yesterday I picked up Miranda at daycare, and she was full of excitement: “Guess what Mommy, tomorrow we get to do valentines! We’re going to have cookies! It’s going to be a party and we’re supposed to wear pink and red and it’s going to be so much fun!!” Her eyes were sparkling and she was practically bouncing with joy… It was just wonderful to see her enjoying herself so much, and I thought for about the hundredth time how glad I was that she had the opportunity to go to this daycare while I work.
After Miranda was diagnosed with Fibrodysplasia Ossificans Progressiva, I despaired of her ever being able to do things “regular” kids can do. However, I gradually learned about all the health care and other professionals who devote themselves to helping special needs kids like Miranda. My little sweetie is able to go to her daycare/preschool 3 days per week, 9 AM to 3 PM, because of a non-profit organization called the BC Centre for Ability, which operates the Supported Child Development Program. The SCD Program assesses preschool children with special needs, determines what’s necessary to help them integrate into daycares and preschools, and then provides funding and resources to make it happen. In Miranda’s case, SCD provides funding to the daycare to have an extra caregiver on staff whenever she’s present, so as to keep her safe amid all the other excited little tykes running around and playing. It’s allowed Miranda the opportunity to have a terrific daycare/preschool experience just like her older brother did.
We’ve also had access to some terrific occupational therapists (OTs) and physiotherapists (physios). The first OT we dealt with at Children’s Hospital made a few different neoprene headbands for Miranda to wear to protect her head when she falls or bumps it. That was an evolving project, but the OT patiently went back and made new models when we asked. The next OT is Miranda’s current OT, a delightful woman from the Centre for Ability. This wonderful lady, AJ, comes to our home about once a month and offers suggestions for how to help Miranda in her daily business. One of the main items she told us about which I really appreciate is the Stokke Tripp Trapp chair, which I featured in a previous blog. That chair is great for seating Miranda at the dinner table so that she can reach her meals, which is difficult because of her shoulder and right elbow limitations. AJ is currently working on helping Miranda figure out the best seating and mouse arrangement for learning to use a computer. I understand she’ll also help later with easing Miranda into kindergarten (fall of 2010, gulp!!).
Miranda is also seeing a physiotherapist from the Centre for Ability. Miranda’s PT comes once every 4 to 6 weeks, and since she is a former swimming instructor along with being a PT, she has agreed to work with me to teach Miranda the basics of swimming. Miranda can’t take regular lessons because her arm, neck and back movements are pretty restricted. So far it’s just been a lot of paddling around, but Miranda’s starting to learn a bit and she REALLY enjoys going for “swimming lessons” just like her big brother…
Finally, we have a great pediatrician and medical geneticist who take care of the medical end of things. These two gentlemen have been really exceptional, helpful and supporting.
I am extremely grateful for all of these magnificent people who help allow Miranda to live her life and do the things other 4 year olds do. FOP is a bitter pill to swallow, but these kind and wonderful folks demonstrate to us time and again that Miranda’s life didn’t end when she got her FOP diagnosis. In fact, it’s only just getting underway…
