Counting Our Blessings at Christmas

We moved to North Carolina about 2 years ago for several reasons. One reason was to get away from California because it is in a horrible financial crisis and nobody is dealing with it which means more crises. We knew that budget issues were a big factor in deciding what services and which providers of these services Parker would receive through the school district. We could also see what the idiots in Sacramento either don’t want to see or are too stupid to understand, that things can not get any better in the near future. Since we found ourselves in a constant battle, attorney and all, with our district, we knew we had better look to other states for educating our child. Like I said, there were several factors that influenced our move and the education aspect was a big part of our decision to move across the country. I must say that North Carolina has definitely been much kinder to us than California in terms of the medical professionals and the school district. After all we experienced with our district in California, it could not possibly have been any worse, and we could only get better. Since moving here, we have been able to find a wonderful neurologist and get some real concrete answers and solutions to treating the seizures. We had one lousy neurologist after the next and not one of them ever educated us about epilepsy or bothered to explain what was happening with Parker. We were never given any input into how to treat his seizures and so we never knew much about them or what our options were. We also were finally able to get a diagnosis of Mowat Wilson Syndrome. We were followed from the day Parker was born by a geneticist, but, she was unable to diagnose this syndrome. He was tested for just about everything under the sun, but, apparently she had not learned about MWS. Getting a diagnosis and a handle on the epilepsy was enough for us to be eternally grateful for moving to North Carolina. We also were and still are impressed with the school district’s system for special education or as it is referred to here, Exceptional Children. We never found a classroom setting in our California school district that Parker would fit into. Because of this fact, he got his teaching at home from a special education teacher. She was wonderful with him and taught him for 3 years and at this time of his life, it was the best possible situation for him. When we moved to North Carolina, he was ready for the 2nd grade and ready to attend school; and, we found a wonderful classroom and a wonderful teacher. In terms of Classroom placement, we have been very happy. That is excluding this past summer when the head of EC tried putting him into a class where we didn’t feel he would be well cared for and was further from home. Once that issue was resolved, we found him in a very nurturing class setting and he is once again getting all kinds of good teaching to help his specific needs. So, there is yet another reason to be grateful for our move across the country. Since Parker is in the EC program and has so many physical issues to deal with, he gets speech, OT (occupational therapy) and PT (physical therapy). All 3 are given to him 2 times a week at school. The first 2 years he had speech in a private setting with the speech pathologist. Since I wasn’t told anything else, I assumed this year was the same and I was shocked and upset to find out last week that he is only getting the one on one speech for 30 minutes 1 time a week, every other week. I was asking about when he had speech so that I might attend a session or 2 and that is how I found out that his private speech sessions were no more. They are telling me that this is now the new model. Okay, but how come we were not told? I get the reason for the “new model”. Budgets are being cut all over the country due to careless spending in the federal through the local governments. I get why we need to cut and I agree. I can’t say yes we need to cut budgets and then complain because my part is cut. I just would like to know why I can’t be informed of such changes. Now that I am aware that school speech is just about non existent, I have begun to inquire about more outside speech. Parker gets 1 hour every week after school and I will get another hour worked into his day. I take him out of school about 30 minutes early for the current speech session and I will take him out early or during the school day, if necessary, to get the second session. For Parker, speech is one of the most important components of his education, so if he must miss more school to get enough speech sessions in, that is what we will do. It is looking like we will be able to get another session worked into his week and it will require me to pick him up mid morning and bring him back just before lunch. But, it is wonderful that we are going to be able to get another outside speech therapy session and it is wonderful that his speech pathologist is so great and works so well with him. Yes, it is definitely worth him leaving school to get the speech session. We are very fortunate and blessed to have found such a fantastic speech pathologist to work with Parker. Even more to be grateful for in North Carolina!


About Lori Linn

Besides writing, Lori has been an Actress both on stage and in film, is currently a member of SAG and AFTRA, and is a credentialed teacher as well as her full time job as a mom.
This entry was posted in genetic disorder, author, Mowat Wilson Syndrome, disability, special needs and tagged , , , , , , , , , , . Bookmark the permalink.

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