Thursday, June 16, 2011

Freedom for my daughter

I'm delighted to share another post with you from a parent member of Holland Bloorview's Family Advisory Committee. Louise

Freedom for my daughter

My daughter (above) is a fabulous, bright and fun little girl. She was born with athetoid cerebral palsy. She is affected in all limbs, as well as in her speech and overall control and balance. She will be six this summer.

Last year we began working with a doctor in a coaching role, to help coordinate our daughter’s therapies and organize our goals.

When she was four, she was seeing six different therapists and going to over 10 therapy sessions a week. At the same time, she was not making progress and anything new we wanted to try caused tension with the therapists we had.

With the help of the coaching doctor, we got focused and took control of the therapy program, working on measurable goals that were a priority for us and having all our therapists work together to create a plan for our daughter. There was improvement almost immediately – in our daughter’s strength and abilities as well as in our stress levels. It was and continues to be a challenge to get our therapists to communicate effectively, but it's worth the effort.

Last summer the doctor encouraged us to try it a water exercise program she had developed. We had never tried anything like this and were excited to try something new. We got our daughter a hydrofit wet vest -- a unique wet suit style floatation vest designed for athletes, so that she could do deep-water jogging three times a week. We hoped to improve her balance, encourage reciprocal motion in her legs, and build up strength and stamina.

The improvement was phenomenal. Our daughter had been taking swimming lessons for a year but it was a challenge because she had trouble controlling her body in the water. It seemed that when she went into water she became more spastic and had more uncontrolled movements than on land. Generally, she can sit well on a chair or bench, but when the swim instructors wanted her to sit on a table in the water with the other kids, she couldn’t keep herself up. Floats and glides were difficult even with a lot of assistance.

The wet vest changed all that. My daughter could sit easily on the table and float and glide on her back with minimal assistance. Needless to say, her swim instructor was pleased. The vest provided my daughter with just the right amount of input and floatation. It was so much better than a typical life jacket, which would just tip her right over.

When we first started with water jogging, my daughter had trouble keeping herself upright, even with the vest. It was a new experience and it took time for her to learn this new skill. She quickly progressed to being able to keep herself upright for two to five seconds before falling over to the side or onto her back. With more and more practice we saw this time improve. After three weeks she was able to stay upright and jog for 30 seconds consistently. After four weeks she could do a minute. By the end of the summer, she could jog on her own, easily, for more than 10 minutes at a time. I'm a good swimmer and 10 minutes of treading water is tiring for me, so I was impressed. Not only could she tread for an extended period of time, but she was doing it totally on her own, she had good form, was in control of her body and was having fun.

The improvement in my daughter’s stamina and strength was noticeable out of the pool too. Even though she had lots of therapy, before last summer she didn’t really have any cardiovascular exercise. She couldn’t run and play like other kids and tired easily. This is no longer the case. Her strength and energy improved greatly. This allowed her to walk longer distances in her walker and translated into an improvement in speech volume.

All that aside, the most amazing thing that came out of the water program was independence for my daughter. She is so physically limited that before last summer, she was never without an adult to hold or support her. Now, she has unrestricted movement in the water. She can swim on her own. We can swim together as a family, for fitness or fun. She began to wake up every morning asking to go swimming or saying that she had a wonderful dream that she swam to one place or another with one of her friends. I will never forget the look on her face the first time she jogged from one end of the pool to the other on her own.


I enjoyed reading this SO much. I'm sending the link to my daughter, who has athetoid/spastic CP. She's in her twenties now; I wish such a program had been available when she was a child! I'm going to check out your links to read more about it, and maybe she can find something similar. Thanks for sharing your experience, and I'm very happy that you found something that helps your little girl.

What an amazing story and such a gorgeous photo.
Louise I would love to hear more from Shoshana about the doctor she is working with and how the coaching role evolved.

Thanks for your message Galen. I hope you find the links useful.

Lisa -- just click on the link for the water exercise program -- it is on the doctor's website :)

Galen - there is a great post on that site from an adult with athetoid CP using the program on her own.