A blow out has been long overdue, from me, with our quest to find the matter with our beautiful girl. Im quite proud that Ive kept it back until now as things seem to pretty much be on an even keel. I can't apologise for my blow outs, they feel so much better when they have been written and hopefully, someone - somewhere, may identify with it and help them too.
So - Its all making sense? Why? Well, right now, I feel equally aggrieved and delighted in the same breath when I say that we are almost certain that Ellie's problems may no longer be problems. In effect her problems could well be assigned to a syndrome and when you have a syndrome, its no problem! Its an answer.
For a few years I have been overly concerned about Ellie's behaviour (on top of her physical probs). I know for certain that other people have seen it as me being paranoid and worrying unnecessarily. But as a mum - you just know these things, don't you? You try to balance their judgement with your determination and let me tell you, it really does hurt. Ignorance far outstrips determination in my book, Im sad to say. But the hurt? Man, its an awful pain you get in your chest like a gaping hole from where a nasty explosion has ripped through your heart and you sit there wondering why it happened but carry on regardless - still hurting and still wondering when the ignorance will strike again. So let me tell you about Ellie's behaviour. Well, she is not a naughty girl and she is far from erratic or disruptive. No, our Ellie is a very quiet child, a girl who has her routines and likes them and whom loves her comforts. She won't give people eye contact unless she is familiar with their frequency of contact, seldom socialises with kids her own age (much preferring adult company - even in school). She is obsessed with facts about animals. And I mean OBSESSED. She can't solve problems really easy and finds communicating very difficult using monosyllabic answers or gestures to get her through. Aside form her physical difficulties, this is a separate problem.
I have screamed at the doctors explaining her unusual behaviour on millions of occasions (immaturity, insecurity, emotional distress from frustration) but no, they focus on her physical issues and even then that's every 12 months now. So I set about trying to gather notes myself. It has always felt it was going to be fruitless and I can see why people think Im just being "a silly" but I honestly refuse to be beaten. Truly, I do. And Im not going to lie that Ive often wondered if Ellie had a slight form of Autism but nobody has ever taken me on to that assumption. So I would put it to the back of my mind and try and ignore it niggling me. But the more I observed her behaviour and how things like understanding time and understanding a written problem were not sinking in,the more incensed I became that only I seemed to noticing it. School just thought it was part of Ellies undiagnosed physical problems and family just thought "oh, its just Ellie". Well, Im sorry everyone, but that is just not good enough. I can't say that my quest to be unbeaten hasn't left people thinking I'm bloody nuts/erratic/paranoid but now, as it comes close to understanding what the matter is, I only hope people take all that back. I really do. It would make me feel so much better and less angry. I don't mean to harbour that anger, Im sorry, but its just how god made me.
Then three weeks ago somebody mentioned Autism to me again with regards to Ellie. And I dug up my research again but I wasn't entirely convinced. I had advice from facebook friends telling me to get it checked anyway although some said that perhaps she is like she is because of her physicality. The latter advice did not motivate me one little bit but again as a mum - you just know, you know. Then all of a sudden, somebody recognised what I was saying and they said that they had suspicions that Ellie has Aspergers albeit in a slightly different form. So I rang school this week to enquire as to whether I would be barking up the wrong tree. The schools SENCO was absolutely brilliant and decided that it would be a great idea (with her backing) to seek the advice from CAMHs. The more I researched Aspergers after that call, the more I am completely convinced she suffers with it. And let me tell you, I have researched many things in the past that could relate to Ellies condition but I have never been tempted to consider any of the suggestions up until now - after 14 blasted years!
I rang a local Autistic and Aspergers group to have a casual chat about my thoughts and feelings and to also get them to affirm as to whether I was barking up the wrong tree or not. The guy that answered the phone was incredibly empathic and he could tell I was a bit nervous about the call. Perhaps its because I didn't want to be wasting his time. He asked me a ton of questions which I answered regarding Belle. And when he had finished he said I had to not to worry one bit and that I should go the Doctors for a referral for a check on Aspergers Syndrome. Of all the answers I gave he was convinced that Ellie shows the characteristics of a child suffering with it although he said that he couldn't rule out that she may have a lighter form of Austism (but that its hard to tell with girls, as girls are harder to diagnose with it than boys). He said he couldn't wait to meet Ellie as he had other children that attend their meetings with fascination about animal facts and that Ellie would fit in so well. I can't measure the relief of how I feel this week. It really does feel like a heavy burden has been lifted from my shoulders. I know thats so cliche, but its true. Ive never been so convinced of that weight being lifted until this week.
Just now, Im trying to come to terms with this new chapter because in one way I feel jubilant that this could be the greatest treasure we have ever uncovered about our girl but in other ways I feel so upset that I have had to take years of emotional injuries to try and get to the bottom of it. So my advice to you is if you are a friend of a mother with a child who has special needs, please understand the emotional journey she is travelling on and not judge or pity her. Instead you should just love her, support her and don't, for crying out loud, thinks she is nuts.
Phew - Im glad thats all out.
Please share with me if your child suffers with Autism or Aspergers. Im very keen to hear your stories xx