It is quite something to look into the face of discrimination and realize that it is pointed squarely at your daughter, your love, your one and only little girl who lights up your life.
We are investigating what it would involve to take on our own health insurance in case their are changes in the future.
What we found out thus far is pitiful and shameful. Our current carrier would insure us all - minus Quinn - at a huge price. But because of changes in the law, we are lucky that in a few weeks they will begrudgedly insure our daughter at an even higher rate. Oh that is reform. AND all this is even before they know the details about her previous bill for a medication for $120,000 for the treatment of infantile spasms, so can we anticipate that the price would increase even more. It isn't much better with the other companies we looked at - and you want to bet when they see the medical concerns she has had, the price will only go up.
And I personally don't understand this health care reform because I have been to busy dealing with possible closure of my main job, Down syndrome, seizures, stereotypic movement disorder, and now a looming evaluation for pervasive developmental disorder. Plus a million and one other things.
Neal posed this question, "Well what did these insurance companies think would happen to Quinn when she became an adult, didn't they think she should be insured?" I responded, "Don't you know the answer is no. They think she should have inadequate health care because they expect she will die at an early age." It is nice to know people have such optimism for your child - the sarcasm is dripping from my finger tips.
The other day Aidan was having a crying fit about something that is now inconsequential. The cutest thing then happened, Quinn looked over at him and did a frownie face. At first I thought it was empathy, she was feeling for her big brother and everything - but maybe it was because his crying was bothering her. :>)
I studied psychopathology in graduate school. Now I teach the course and regularly look to my DSM-IV-TR as I complete psychological evaluations for my private practice. I will be completely honest with myself and say that one diagnosis that I never really thought much about pre-Quinn's own diagnosis with it was 307.3 Stereotypic Movement Disorder. Now I just can't look at certain things the same way. Every time I page through my DSM I stop for a moment and look at that page. That never happened before. And then there was yesterday when I saw a lifeguard at an indoor water park that we were staying at. I know that this lifeguard in all likelihood does not have a diagnosis of Stereotypic Movement Disorder, but I couldn't help but to think of this disorder as I watched her stretch her neck back and forth in the same way that Quinn does when she is doing these movements. No other lifeguard did it quite the way she did it and it looked just like Quinn stuck in her movements. Back and forth. Stretching the neck from side to side. Over and over again. Now the lifeguard was trying to look by the side of the pool and make sure no one was needing assistance, but my daughter does these things not for a job, not for any purpose really except to perhaps stimulate herself. Some days she does this a lot, other days not so much. But I will never look at certain things the same way. I now notice things that other people do not. I think Neal and I were the only two people in that huge waterpark that looked at that lifeguard that way, thinking of our daughter. Stereotypic Movement Disorder is just one thing that has changed my life.
When I drove up to our house last night after my typical 12 hour workday, I noticed something, or rather somebody standing by our window and looking out over the neighborhood. And this little person was not so little anymore. Miss Quinny was standing there watching the cars and people walk by and, more importantly, waiting for her mother to get the heck back home. If it wasn't for that pesky desire of wanting to avoid an accident, there would have been no way I would have turned away from watching her watching me and standing by the window. I parked the car and then like a stalker walked to the front of my house to watch her some more. I don't know why, but it just warmed my heart so much seeing her stand there watching over her universe.
My baby boy is turning six today. I remember his birth just like yesterday. It had all the drama consistent with Aidie - ha ha. I was watching him sleep this morning thinking where did my baby go? Here is a photo signifying just how grown up he has gotten (ha ha). Happy birthday my sweet.
It may seem like a small thing to some, but WAY COOL is that Quinn climbs up on the couch or recliner and likes to sit back and relax. I don't know why, but that makes me feel WAY GOOD!
By the way, I would like to make a formal announcement to the world that she is NOT walking on her own yet and please REFRAIN from asking me this repeatedly. I don't know how many times I have to have the talk with people that it is best to ask a vague question like, "Is Quinn doing anything new?" versus specific skills like that and then looking shocked when you have to answer in the negative.
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.