Thursday, 2 January 2014

Lucy's History

I'd waited an awful long time for my little girl, it felt like a miracle when I finally fell pregnant and stayed pregnant. She then came early, but only a couple of weeks so was classed as full term. I had her at 8pm but wasn't taken to the ward until around midnight. I didn't sleep that night, I just kept looking at my little girl, not quite believing she was here.

She cried a lot as a baby. We believed she had colic, each evening she would scream relentlessly for at least two hours solid. Then at three months old she calmed down. She didn't sleep through the night though. She still doesn't at eight years old.

We had trouble toilet training her. She just didn't get it, despite all our efforts, and we tried everything. She would simply scream the second we put her on the potty or the toilet. She started nursery at 3 years and 3 weeks old and I thought I could get away with putting her in pull-ups, but they said no. We had to keep her home until she was trained. Eventually, we managed to get her to sit on the toilet. She screamed, but then she pee'd, and that was it. After the first 'hit' she wanted to do it again and again. The number two's were a different story though. At eight years old she still doesn't go on the toilet. I've mentioned it to several doctors but they have not believed it to be a medical problem. I've tried everything, believe me, I could write a book on all the methods we've tried, but I am more and more sure that she's just not feeling it. She does not feel the need to go, and does not feel it come out, I'm sure of it. She gets so upset when she's messed herself. We've stopped being angry, but we'll never be resigned. We will keep on going, and I will keep on asking doctors. Maybe one day she will feel it differently, or maybe the right doctor will tell us why.

For as long as I can remember, and as long as Lucy has been able to tell me, she has been getting pain in her knees. Mostly at night, but sometimes during the day too. The pain is bad and requires me to massage her knees as well as a dose of pain relief. We also use wheat bags warmed up on her knees, but these are not always practical as they fall off while she's asleep. I've told the doctors and she did have x-rays. They found nothing but did point out that her joints were hypermobile and this could be a cause of the pain. She sometimes has trouble walkings, even the walk to school is too much for her some days and we either have to walk very slow, or she has to stop and rest. Some days she is fine and can walk and run just like any other child.

Lucy has also suffered from really bad headaches, at one time they were getting quite regular so the GP gave us beta blockers to take on a daily basis for a few months to break the cycle. They did seem to work for a while, but she still gets headaches.

When she was at nursery her teacher said she had problems playing and working with the other children. She thought that maybe she showed signs of autism. At three years old I thought that maybe she was just immature but I'd been here before with her older brother. I'd buried my head in the sand and convinced that he would grow out of it. He never did, and I knew Lucy wouldn't either. I did leave it for a couple of years though. I wanted to be sure that there was something wrong before I sought a diagnosis.

At six years old Lucy was diagnosed with high functioning autism. Her teacher at the time was brilliant, she researched everything she could to make Lucy's life easier at school. Lucy had extra help at school from the autism team. She had occupational therapy, speech therapy and physio therapy. She was coming along brilliantly.

Then this summer things went pear shaped. She hurt her neck, we moved house and school and now all the help she was getting has to be set up all over again. Of course with her neck it means she has lost a lot of time at school. I hope that this year we can remedy that and get her back on track. We only have a couple a years before she has to start secondary school and the real trouble begins. I can't afford to let her slip now.

My plans for this year are:

  • get her a proper diagnosis for her condition so that if anything like this happens again the doctors will know what they are dealing with.
  • liaise with her new school so she can have her support system in place again.
  • work with her to catch up with the other children on her actual school work 

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