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Erin's Story

My daughter is precious.  Erin is 7 years old and it is both a challenge and a privilege to be a mother to a child with Asperger's Syndrome.

 

Up until April 2005, I had never heard of AS and will admit to being quite ignorant about autism.  We knew from Erin was about 4 that something wasn't quite right and when I first saw the pediatrician I was told that my concerns about ADHD were unfounded.  To put my mind at rest he referred her to a child development pediatrician (CDP) and so the journey began.  The original pediatric consultation was in September 2004 and we eventually got a diagnosis in February 2006.  We live in Northern Ireland and from discussing this with other parents the diagnostic process was very quick for us.  This is largely due to the pediatrician who saw Erin originally and who kept her case on file and pushed hard for the diagnosis.  We owe our thanks to Dr Mark Rollins of Causeway Hospital in Coleraine for his efforts. 

 

Asperger’s Syndrome was first mentioned after the first school visit by the CDP.  It was a smack in the teeth.  I knew nothing and started searching for information.  Tony Attwood gave a lecture in Belfast in September 2005 and it was total enlightenment.  Everything he said during that lecture was Erin to a tee.  (I have to think sometimes if it's ok to use little idioms like 'to a tee' because I know Erin doesn't understand them).  We came away with positive feelings and adopted many of the practical suggestions he made during that lecture and it really made a difference.  Tony if you ever read this - you're a genius and you make a real difference to people's lives.

 

Erin's side of the story is difficult and hard for a mother to tell.  She was bullied, teased and completely friendless and insular for her first 2 years at school.  We approached her school several times about the bullying and we were told that Erin was aggressive, confrontational and badly disciplined.  This was pre diagnosis but the school were in no doubt that the problem was down to us - her parents.  Because we were seen by the school as "troublesome parents" they took it out on Erin.  The vice principal sent Erin to an unoccupied classroom for the remainder of lunchtime one day as a punishment because she was being echolalic (I later found out this is a common trait of AS).  Erin came home from school that day really distressed and I followed it up immediately by asking for an apology.  We pursued it to the Board of Governors but they sided together and refused to apologise.  Erin never went back to that school after that.  I knew after everything that had happened they would vindictively make her pay.  She had suffered enough bullying from both staff and pupils at that school.  She started the following week at another local school and we've never looked back.  Although we still didn't have the diagnosis at that time, I made the school aware that is was suspected AS and from the day she went in, the staff couldn't have done anymore for her.  Mr. Kelly and his staff of St Columba's Primary School in Kilrea have been patient and kind, made efforts to accommodate Erin's "little ways" and have done everything to develop and nurture friendships for Erin with her classmates.  Within the first few weeks of her starting her new school, she was rushing home with excitement to tell me about her new friend who was "nice and kind" to her.  We were delighted and although we had been apprehensive about her moving schools because she finds change so difficult, everything was working out perfectly.  Then tragedy struck.  On the same day we went to hear Tony Attwood speak, the little girl she had forged a friendship with fell off her horse.  She died 3 days later.  The whole community was unsurprisingly distraught by the tragic death of such a young and innocent child.  She will always be in my thoughts because she was obviously a very special little girl.  Albeit for such a short time she was Erin's very first friend.  There is nothing like death, especially of one so young to make you feel grateful for what you've got and although Erin may always have difficulties with social acceptance, she will always have the love, support and guidance of her family and we will have her in return.  When I told Erin that her friend had died, I told her she had gone to heaven and Erin thought for a few seconds and then asked if her friend would get her own wings.  There were no tears from her and when Erin saw me crying at the funeral, she asked her daddy why I was crying for nothing.  Obviously a lack of empathy is another trait of AS!

 

That's 10 months ago now and in that time, although it seems callous to say she has moved on without this having affected her, the one advantage of living in her world is that a lot of things do wash over her.  She has formed a new friendship with 2 girls in her class and they're inseparable.  They accept her for who she is and her confidence is as high as I’ve ever seen it.

 

Erin will always be special to us.  I accept that it’s hard sometimes to get through to her and it takes patience to get her to understand what she can and can’t do.  But with the support of her new school, her friends and her family, Erin is a very different child than she was when we first set out on this journey.  She is beautiful, happy, confident and the most wonderful daughter you could wish for – well most of the time anyway!  We look forward to the rest of the journey with her and after what we’ve already been through we know that as bad as things get some days, there are a lot more good days just round the corner.