5.4.12 Honey Bird

Aimee's new mask (the pixie) for the BiPap machine came last week. This is the third one we've purchased and we're hoping it is a charm. We've actually been trying it without the chin strap, just because we hate the strap so much. It is uncomfortable and big. Just like the previous masks, the strap is designed for use by adults. The pixie is the first mask they have made for children and it just came out. In fact, it is so new that when we were at the pulmonary department trying it on, all the other doctors, sleep technicians, and nurses kept poking their head into the room to get a look at it.
We are still having some difficulty with the fit of the mask. As Aimee is growing the right side of her face is quite a bit less pronounced than the left side, so the mask is always somewhat tilted.

I am excited to tell you about a book that I have been reading called 'Kids Beyond Limits'. It is written by Anat Baniel who has been working with special needs children for over 30 years. Rather than focusing specifically on fixing what the child can't do, she uses gentle methods to connect with the child and stimulate their brain to learn. It is all about maximizing their potential, just like we want for all of us. She says that children with special needs have the potential to be even more brilliant than their peers if they are enabled to learn how to overcome their limitations their own unique way. Through her therapy kids with autism, asperger's, brain damage, ADHD, cerebral palsy, sensory disorders, and undiagnosed developmental delays have seen amazing results.

Some of the things that she says in her book that have caught my eye:
-If the child could do it, they would. Basically, the solution isn't that you just need to show them how to sit repeatedly. If you do, she claims, you are actually teaching them to fail over and over again. The inability gets repeated so many times that it is the pattern the child's brain learns.
-The brain is amazing and has the ability to compensate for missing parts, damaged areas, and other limitations. We want for them to develop their own ability to awaken their brain to learn and grow.
-Goals are important, but they should be flexible goals. When we are teaching the brain to make more connections, it is going to pick up new skills and understanding. We don't get to choose what skills those connections become.
-Believe for the impossible for your child. Don't give up hoping and being enthusiastic.

There is so much more to tell you about what I have learned in reading this book. Two things that I will tell you for the moment though. First, I have discovered a mom in Bellevue that learned Anat Baniel's method in order to work with her own daughter who struggled with sensory issues. She now offers clinic part time called Seattle Sensory Education. I talked to her today and she is going to do a free consultation/lesson with Aimee in a few weeks. The lessons are quite expensive, but I know God will provide. I'm excited to begin!
The second thing I wanted to share was this little poem I started writing about Aimee yesterday. I have felt inspired these last several days since reading this book. It is really very rough, but at least you can see that there is great hope for our little honey bird.

Honey bird in charming cage
No hatch to let you fly
Yet lithe, swift with poised wings
Ready to soar high

Affectionate bird in baffling snag
Sparse light does find your eye
Yet bright, whole with full sight
Ready to see why

Treasured bird in partial maze
Squeezed between tight bar
Yet strong, complete with possible
Ready to journey far

Peaceful bird in murky fog
Muffled fragments heard
Yet joyful, comprehending
Ready to sing the word

Miracle bird in doubting world
Hopes elusive held
Yet faith, tomorrow loves its part
Ready to contraries weld

Honey bird in charming cage
One day soon you'll fly