Currently I am trying to get a proper diagnosis for her, she has already been diagnosed as having high functioning autism and hypermobility syndrome, but I want further investigation into the hypermobility syndrome in a vain hope that she will get better treatment in the future.
Earlier this year at the beginning of the school holidays, Star woke up with, what is effectively, a slipped disc in her neck. At this moment in time she still has that slipped disc and all the physiotherapy she has been given has strengthened her neck so she can hold this twisted position without so much pain. No treatment she has been given has actually improved the position of her neck and I'm beginning to believe that it may be permanent. The medical slang for someone with a rare or obscure medial condition is a Zebra. Medical students are sometimes taught 'when you hear hoof beats, think horses not zebras' In other words, always look for the obvious problem rather than the unusual. In many ways this is a good thing, but not when it gets to the point where people are forgetting what zebras look like, or even the fact that they exist. I believe that Star has Elhers Danlos Syndrome (or Hypermobility Syndrome type III) and this is considered a rare zebra condition.
The past few months have been difficult for the whole family but even more so for Star. First she had to leave a school where she was progressing well. She had lots of help in place and I had a good relationship with the school and we worked together. It was sad that she had to leave but we really had no choice. Then she had her neck problem, the hospital still insist she must have fallen or injured it somehow, they won't accept that it happened while she was sleeping. Most of the school summer holiday was spent in hospital or visiting hospital. We barely had time for anything else. Although we did manage a couple of days away in Blackpool.
Then we moved house. That was traumatic for all of us, I had lived in our old house for twenty four years. We left behind family and friends and although we didn't move very far, it's not the same being on the same street.
Next up was a new school. I'd had real problems finding a school for the littlies because there were no places for all of them at any one school and I didn't really want them separated. Also the school holidays hampered my looking and contacting schools, especially as the Local Education Authority in our area had recently handed back the school admissions back to the schools rather than taking applications themselves. By a stroke of luck I managed to find a school that had just take on a new teachers so they could have another year two class and the girls where accepted. This meant no planning, no visits, no preparing. Just one morning to say hello to the teachers and tour the school and then BAM back to school after nine weeks off. Of course, Star is still visiting the hospital twice a week so that has been another thing to contend with, as well as still having to wear a collar.
|back to school, finally|
So now we are currently seeing a severe regression in Stars behaviour. She's not sleeping again, she's having tantrums, being miserable and refusing to go to school. She has lost all control over her emotions and is constantly breaking down. I am hoping that this is just a temporary back step, only time will tell. It's half term this week but my plan is to go into the school when they return and see what I can do to make school life more easy for her and make sure she has everything she needs in place.
However, despite this being a fairly negative post I still have to think of all the positive things we have achieved. We had a lovely new home for one, after being cramped up in a tiny house for so long it's like a dream come true having somewhere big enough for all of us. Also, I did manage to find a school where they could all attend together, I really thought for a while that they would be split and I would be working out how to be in two different places at the same time every morning and afternoon. Finally, despite everything, Star has made a new friend. She doesn't make friends easily, but she has really clicked with a little lad who lives in our street and goes to the same school. They walk to school together and really enjoy each other's company. That's a big achievement for Star, a little shining light amongst all this stress.