Our gorgeous daughter was born in 2005. You may not know Erin but she is beautiful, kind, intelligent, has amazing creativity and to us, is perfect in every way (takes after me I think!). She was our first child and my husband and I were the ultimate proud parents – although we really had no clue and I thought I deserved a medal for just getting out of the house before 3pm!
We realised Erin was not happy with other children pretty much as soon as she was old enough to know they were there. She didn’t really crawl and when other babies would crawl over to her she would start to scream and cry – a real “end of the world” type cry. As time went on and we graduated to soft play centres, Erin would be the one sat on my feet, wanting to investigate the toys but from the choice of staying attached to me or playing, she would choose the former. She didn’t need me to acknowledge her there, on my feet, but she would not let herself go unless I went with her. It’s worth saying we weren’t with strangers, I had the most amazing post natal group of friends who became my life line of support and who we met with once or twice a week every week for 5 whole years! One even became Erin’s Godmother! Erin knew these children and their parents but it made no difference.
When Erin was up and walking we would go to the park. On one occasion Erin was sat in a timber car up a ramp. It had a side window, a tiny gap that was about 5 foot off the ground. Another child slid onto the seat beside her and Erin shot out of this tiny gap to get away – luckily I caught her! Our friends just accepted she wasn’t good with other children. Nursery was a nightmare. She went for one day a week so I could work. I lost count of the number of calls I had to go and collect her because she had been crying so much she had made herself sick!
Erin liked everything just so. But that’s not unusual, many children like things in a routine. Their drinks out of a certain cup etc. I can remember one day I was carrying Erin upstairs for her nap and I had been dusting and had not put an ornament back onto the window sill. Erin screamed and cried and was burying her head in me saying “put it back, put it back”. I think it was this final reaction that made me realise that something was going on.
Erin’s dad and I did some research and we realised Aspergers seemed to fit the bill. Erin was clearly very bright. We still had very little understanding though and kind of muddled through. Erin was so well behaved but just got sad. It wasn’t until Erin was in about Y3 at Primary School. It was Christmas time and she was standing underneath a gazebo at school and I could see her face twitching. By the time we got home the twitch was worse. Having no idea I said “what on earth are you doing with your face??” Now knowing that that was probably the worst thing to say! The twitch got worse over the next few days so much so that in one period of 90 seconds she twitched over 60 times. I made an appointment with our GP who immediately referred us to a neurologist. Terrified does not come close to how we were feeling as parents. But it was Christmas so we had put up all the decorations, cards were hanging from every wall space and we tried to cheer everyone up by constantly talking about Santa.
We saw the neurologist within a matter of days. He examined Erin and told us it was stress. Stress! What on earth did my 7 year old have to be stressed about? My God, were we really such awful parents? He was great and explained that a child’s stress is completely different to an adult’s stress. Even exciting, positive stimuli could cause stress to a child on the spectrum. Erin’s stress levels were so high they had manifested themselves into a physical release.
We were referred to CAMHS. Initially I refused to accept the referral. I was mortified that my child was stressed and felt that CAMHS dealt with really ill, depressed children and that was not my daughter. My GP spoke to me and reassured me that they would be able to help. I am so glad we went. The wonderful Dr we saw chatted to both me and Erin and felt that Erin did have Aspergers. She explained the importance of keeping stimuli to a minimum and taught us both about the spectrum.
I cringed at how we had done just the opposite of that over Christmas. The guilt you feel as parents is indescribable. I grew her in my tummy so ultimately I felt the blame rested with me. How could my daughter who is so loved, feel so sad? We analysed over and over again everything we had done “wrong”. Then the fears for her future enveloped us, would she be happy? How could we make her happy? How could we protect her from this huge scary world? Well, with lots of research (and I mean loads) and lots of support from some fantastic friends, family and school, we put in place some great strategies for keeping routines and helping Erin know exactly what was coming next and importantly what was expected of her. Erin simply transformed.
Erin, at times, had a kind of sadness about her. People have said to me since, “oh she was such a miserable baby” (yeah thanks, that’s really great!) but now we understand why. Now that we understand so much more about what works for Erin she has absolutely blossomed.
I could write forever about our experiences, this all just seems so brief, but I think knowledge is truly key and Erin is the one who gives us, as her family, so much knowledge about where she is coming from, it makes it a privilege to be able to help her overcome the massive challenges that she faces in a simple day. We couldn’t be more proud of our Aspie-Kid and we love her to bits!