After a week of continuous illness - Matthew followed by Abigail, lack of sleep and other stresses, I had that multi-disciplinary meeting that I was so dreading.
I woke yesterday morning with such a feeling of dread, determined somehow to do the best for Abigail. Having received a letter from our paediatrician during the last couple of weeks, I felt the focus of our meeting would not be on the very real challenges that Abi faces, but about our family history and how that was most likely the cause for her behavioural difficulties. I have also always had the impression that there are no issues in school.
All professionals involved with Abi, excepting one who sent a letter with recommendations, attended the meeting. I had my parent partnership worker and our Nanny/Behaviour Therapist with me for support. There had been no seating plan, but interestingly all the professionals sat on one side of the table, until our OT arrived. It felt very much like looking into the eyes of the firing squad. From my perspective I felt I was there to prove myself and to prove to them that there are genuine difficulties, lets face it, not too many families find themselves in my situation with not one child with "needs" but all three. Thinking about this objectively, it really could be perceived that I have nothing better to do than dream up problems.
But back to the task in hand, school went first and as I suspected, it was stated that Abi was an exemplary student, she achieves well and she wants to achieve, lovely girl, no problems and then it came, that lightning bolt I simply was not expecting, for me it completely changed the direction of the meeting. Suddenly I am hearing that my daughter can not work in groups, she works best in a pair but she has to be in control, she has only a couple of strong friendship bonds but with issues,she does not have the confidence to approach all adults and she is so expressionless they can't even tell when she's happy! I felt the whole tone of the meeting change, no-one was expecting that, having been repeatedly told that there are no problems in school.
Abis Paediatrician gave me the chance to offer my opinion next, but I asked the OT to share her assessment. In my head, it made sense for the professionals to go first and then I'd say my piece after. I noticed that even though she had written a report, it was very different people having to listen to her account of Abis challenges first hand rather than reading it on a piece of paper. This meeting really wasn't going the way I had imagined, as it was explained exactly why Abi behaved the way she did. Not only that, it was made clear that whilst Abi has significant sensory processing disorders this did not account for all of her difficulties. The OT said, there is another child in the house with Sensory Disorders who has responded very well to intervention but we are not moving forward with Abigail as we should be.
Then it was the moment I dreaded, my turn. I felt so choked up and really didn't know how to start, but somehow I did without crying or showing any anger, and oh boy I was angry, at least five years worth of angry! I sat and described the difficulties my lovely daughter has that I can not explain. Immediately I was challenged from the one direction I knew it would come, not only was I expecting it, I was ready for it. In that moment I felt nothing but cold anger and determination. I would not sit and have the blame put squarely on my shoulders for some perceived parenting crime. I laugh in retrospect, as at one point boarding school was suggested, as it would be interesting to see how she behaved if she could not come home and "let go"! I found it hard being asked to justify my statements time after time, but I was prepared. I described Abi as a fantastic artist, she loves drawing but she only draws about her current obsession, I had organised myself enough to bring with me a whole host of drawings, changing as her latest interest changed. I was asked for them, but only one person used a negative tone.
As we started to plan how to move forward, a very bold statement was made by a member of the group. "You are talking about an autistic child, that is what you are describing". It got a little bit heated at that point. It would be fair to say that Aspergers has been mentioned on more than one occasion, BUT thats not where we are, there is no diagnosis. Whether thats the road we end up on remains to be seen. What I needed/need is a plan, where do we go from here, what happens and how on earth do I help her? Sadly, social services need to be informed again, for my protection, to ensure nothing is twisted around on me.
We now have plans, there are assessments and meetings planned with no firm thought for a diagnosis which might not be forthcoming, but there is definite movement. Sadly, my position hasn't changed, there isn't any extra support available right now and no magic answer but there is progress and for that I am grateful.
The one thing that I really took to heart as I left that meeting was this comment "It needs to be recognised how much work Vicky has put in". The same person then said, "I don't know how I would cope in your position" (or similar words, its late, I'm tired). Its the first time I've received that kind of public acknowledgement of just how damn hard things are for me personally and it meant alot.
I don't often feel sorry for myself, I'm not that type of person, but recently I have felt defeated. So many difficult things have happened in the last few weeks, but with that one comment my feeling of defeat lifted. It has been made so clear just how bad things are and that there is the potential for a catastrophic event unless there is some input, and quickly. It's been acknowledged and recorded, it just remains to be seen what is actually done.
