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Saturday, July 29, 2006

Handicap Placards and New Car Purchase in Summer's Heat

Metro West is a low land cauldron of summer heat. Air conditioners drone as the heat and humidity compete for what little oxygen is left in the atmosphere. People move slowly and perspire just the same. We take refuge in our ramshackle house that does not know what style it is and is perpetually in renovations. Walls knocked down in order to be able to see her at all times and get to her quickly if she is choking. Doorways widened to accommodate the "chair" and all windows and cabinets with lead removed. She already has brain damage - why add to the problem. Still it is our home - ours. Our refuge from the heat and outside world. It is quiet and accommodating and filled with the good vibes of happy past inhabitants. Babies born in the downstairs tub. Hand prints of children in the foundation. Nicks in the door frame from forbidden inside ball games. All happy bits of laughter and love haunting our house with a great benevolence. We are peaceful here.

The winds of change are blowing a cooler wind our way. This week we were able to acquire a car that will fit "the chair" and allow all the discs in my back to stay in place while getting her and out of the car. Now I sit higher on the road when I drive and in doing so feel less back pain. It took 7 months to get the handicap placard. The clerk at the RMV told me when I called after the customary month that the website says it will take that they were running two months behind and to call in two weeks. She said that they were usually two months behind. So I called two weeks later and another clerk told me that there was no record of the paper work. This put me over the edge. The RMV makes it a bit difficult for a handicap person or caretaker of such a person to get a handicap placard. First, you have to get a signed form from your doctor. This I have no problem with. But I do have a problem with the fact that it expires after one month. So tell you doctor not to date it. I got my first form signed by my child's doctor in December and then my child got sick and we were house bound. By the time I could have gone to the RMV it had expired. So I started again. So that is the first thing wrong. In February, I brought my daughter down, forms in hand only to be turned away by the clerk who jotted down the number of the medical advisory office and said I would have to come back to get the picture taken in another month once I was sent a letter telling me to come down. OK - a disabled person has to go to the RMV TWICE in order to access handicap parking spaces that were created for them! That is ridiculous. I should have right then and there asked to speak to a manager.

After one more month I called and that is when the clerk told me all of my child's records were lost. This is when I really got mad. I asked to speak to a manager. I communicated to her my story of woo in a near hysterical but strangely crystal clear coherent raised voice. She told me the clerk should have never turned us away when we went down there. I could hear an older man in the back ground expressing his outrage at our situation in a gravelly Boston accent in the background. In the end I had to have my doctor fill out the forms for the third time and fax them to this manager. She alerted the RMV that I would be coming down again and told me to ask for the manager when I arrived. I did so and upon arrival and a 2 minute wait they took Ellie's picture right away. We were out of there in 20 minutes. The placard arrived two days later. So there is some humanity in the RMV - you just have to find it.

For all parents of a disabled child - know this: if you have a handicap placard and you are buying a larger car to accommodate your child and all their equipment needs the law exempts you from paying sales or excise taxes. You will need your doctor to sign the RMV form 33 and bring it with you when you purchase the car. And if the dealer tells you they have never heard of it they are ignorant. Here is the link to that webpage:

The only reason we knew about this was because another parent of a disabled child told us. Take advantage of this!

Ok - there is my rant for the day regarding the RMV.

Friday, July 21, 2006

Introduction to Life with a "Special Child"

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.