Wednesday, August 29, 2012
Abe continues to amazes us daily. Over the last month he has said and done wonderful things. He played with a toy he received from the Ready for Kindergarten program with focus and used his fine motor skills to put the blocks correctly on the appropriate color plus he identified the shape of each piece. I was impressed because he usually just throws it. ABA therapy had helped him a lot with his behavioral issues one of which is throwing toys and banging his head. I am sadden to say that Tricare will no longer pay for ABA therapy under the ECHO program unless the child has an autism diagnosis. We have seen real progress and have learned from our ABA therapist beneficial educational and behavioral skills that we have not learned from OT, PT, ST, teacher for the vision impaired, special ed teacher or any other provider that has worked with Abe. I will be inquiring how to fight this because why would a medically complex, brain injury children not need ABA therapy? I also plan to get him tested for autism because I have had multiple people ask me if he has autism. I know adult stroke victims sometimes have personality changes after they suffer a stroke, some become violent due to expressive communication difficulties. I can imagine that behavioral training can assist with this even for an adult. However a child's brain is still developing and changing so why did a Federal judge in California make a decision to take this service away from special need children of active duty military? I guess my husband and all other active duty members risking their life so we all have daily freedom is just not enough for our special needs children to get to the therapies he needs in order to maximum their potential. What is the incentive for people even to join the military then? I also know some retired military that gave 20 years of their and now are struggling to find jobs, pay for their homes and food. Some are losing their homes. This also makes me sad since those people risked their lives, worked weekends, holidays, shifts that last more 24 hours, ect and now they can't provide for their families. There is a country song that talks about the sacrifices our military makes for our freedom. When I first started writing this it was about the Bible and Abe's accomplishments.One last fact about the prior topic if it was not for our military fighting for American years ago we would not currently have the freedom to read the Bible. Last night while I was doing the dishes he said "Bible", "read Bible" while opening the little Bible the Gideon Foundation gave him at the county fair. After I finished the dishes I picked him up to carry him to his room for a diaper change, he still had the Bible in his hands. While changing his diaper he said "Bible, book of Jesus" without any prompting. Another amazing thing he is doing, he pulls himself to a standing position on occasion. Tonight he went to the refrigerator and pulled himself up a standing position while asking for "mac cheese and chocolate milk". We gave him some chocolate milk to fatten him up so now he thinks all cow's milk is chocolate milk. He is determined to stand and walk but much like a stroke victim he has right sided weakness and balance issues. I wonder if there is any medical treatment that re-trains damaged areas of the brain to take over these functions. At an appointment with his new pediatrician he had gained 3 lbs according to the scale. He did not fuss so much when the core men did this vital signs. He is growing up so quickly. It is difficult to imagine what life would be like if I did have life support stopped in the NICU. He has far exceeded the expectations that we were told when he was only 9 days old. I honestly thought he would be unaware of his surroundings and have a different quality of life. His quality of life is different than typical 3 year old boys but he still likes to explore by crawling instead of walking, play with cars, get dirty, wiping his dirty hands on his pants and he tries to jump off the side of our coach. Abe also has started to pretend play. Currently he has a bowl from the NICU, (one we put his first bath water in, yes it has been cleaned), he is "making, cooking" "mac cheese". I will continue to post at least monthly. Our September is pretty busy, some appointments in Seattle, base ball game, Great Wolf Lodge, zoo plus Abe starts school. So glad some of the calender is not all appointments or therapies but some fun stuff too.
Posted by Karen Goddard