This blog is about my journey through life with a special needs child. Anyone who has read the bit about going to Italy or Holland knows what I mean. Anyone who hasn't can find out a little more by reading this blog. We (my husband, daughter, and I) have had many adventures thus far and have come to know quite a bit that might be helpful for other parents of not so able bodied children. We walk the medical path, the alternative path, the management path, and the healing path. We live in the healing paradigm, meaning we believe that our child's brain can heal versus just be managed as if it were in a static state. I will explore the consequences of the management paradigm, the fallibility of doctors and the medical paradigm and also focus on nutrition. Mostly, I will share what has worked for us to get our child to heal.The perspective I am coming from can be understood through the avenue of language. Here are some thoughts on that.
Special. You have to love that word. Especially how "they" apply it to children or adults and everyone in between with disabilities. I have heard all kinds of politically correct (PC), corrections to using the terms normal and abnormal. PC terms used to describe my daughter who has cerebral palsy: differently abled, not typical, disabled, special needs, and handicapped. With their opposites - able bodied, typical, and normal.
What most parents of special needs kids, some therapists and nurses understand is that "special" means a great deal more. Special, in our world, refers to the fact that we live a life with an angel. Yes she is a kid. Yes she whines. Yes we have to learn to discern from a whine and an approximation of language so that we can discipline her at times and answer her at others. Angel, because it's a miracle that she is still here. Angel because she has opened our hearts wide enough to let a torrent of love in, painful as that can be to a new parent. What people don't get is that, sympathy is not necessary. We have not "fallen on hard times". If you come to understand our world you will be in awe of it. The spiritual, emotional and mental unfoldment is something to be in awe of.
When I think of special, I think of my daughter who amazes me daily with her courage, intelligence, love, and ability to extract joy from life. Someone said to me today that we were "low incidence" - meaning there are not a ton of kids like my daughter in the public school system. I think that there is a low incidence of kids with CP in the mainstream population centers like school, and the library, and on public streets because of poor accessibility. It horrifies me to think where all of these kids and people have been shunted away to. But yes, on the other hand, and thank God, most kids do not suffer traumatic brain injury at birth.
The most important realizations have come from conversations with other parents we have met along the way in the NICU, at the therapy centers we go to and the most surprising places. One mother ran after us in the Home Depot parking lot, her child in her "special" stroller bouncing along, because she spotted our daughter in her Kid Kart. That was a particulary excellent outreach move on her part. More pieces of the school navigation puzzle were answered by her - at just the right time. There is so much syncronicity or coincidence in our world it's quite weird at times how our struggles and questions get answered - even when we don't always ask them aloud. I would like to know more parents and kids in situations like ours, because it's a rather isolating thing to have gone to Holland when everyone else goes to Italy. So do chime in, any time! I will share what we have learned here. If any of it helps even one other mother or father or person in similar circumstances, then I have succeeded.
