Thursday, March 1, 2012

Lots going on

Hmmm....let's see. Thanksgiving and Christmas went great. I had Thanksgiving at home for the first time ever. It was just us with two of our nieces. Christmas went better than expected. January was a flurry of activity. I took Grace to see the doctor in November over concerns with her swaying all the time. I suspected hyperactivity, but I didn't want to suggest it yet. The doctor was not very nice. He basically laughed at us and told me that sometimes mothers see problems where problems don't exist. I asked for a recommendation for an OT, and istead he gave me a recommendation for a neurologist so I will "see that nothing's wrong". her appointment was on January 10. The neurologist listened to my concerns, then said that Grace has sensory processing disorder. (SPD) Since then I've learned that she is a sensory seeker. She also told me that Grace has all the facial features of Fetal Alcohol Syndrome. Boy, was I shocked.

Since then it's been a whirlwind trying to get her the services she needs. The neurologist did prescribe OT and PT. We are having a lot of fun trying to figure out what her sensory diet is. This includes activities that she can do that will allow her to settle down and concentrate in class, as well as activities that will allow her to participate in story time appropriately. It will take some time working with the OT before we find that magic combination. My only regret is that we had to leave our doctor after all this time. He was there for us when we received word that we could not have children. He worked with us through our depression. He was ecstatic with us when we decided to adopt. He was so excited to help us fill out all our medical forms. He almost cried when we brought our daughter home and had her first appointment. He's really enjoyed seeing her grow and develop. Unfortunately, he's missed several big flags, and I've just had enough.

Whenever I would bring her in I would mention how gassy she was and expressed concern how that wasn't normal. He just kept insisting that she was just gassy. Fast forward a bit, and we learn that it was lactose that was doing it. We had a similar battle just recently and discovered all dairy and soy causes issues, too, but I had to do all my own detective work to figure that out. I have been concerned about her size. She is very small for her age. She will be five in a couple days, yet some two and a half year olds are bigger than she is. Her two year old cousin wears the same size pants! However, I was met with "she's just petite".

The diagnosis of FAS totally explains her size. It also explains her digestive issues, as I later discovered that a lot of children with FAS tend to be intolerant to several foods. It also explains the SPD. When I confronted our doctor with the evidence of FAS, he ignored it and said she just looks Russian. I've had enough. He expressed concern over "labeling" her too early because it will follow her the rest of her life. However, we have to acknowledge what's before our eyes. There are certain behaviors and habits that need to be addressed if she is to become a well-functioning student, and ignoring the FAS diagnosis could prevent her from getting the help she needs.

Currently, she is working with an OT to help us figure out what she can do to settle her system. We are also seeing a PT to help with gross motor issues. We are waiting to make an appointment with a developmental/behavioral pediatrician so we can confirm if some of the other behaviors are FAS related or if there is additional ADHD to work with also.

All in all, we are having a busy Winter/Spring. Hoping to write more later.