After the diagnosis

And that was that. We were thrown into the deep end. The practice did give some advice about the kind of therapy we could enroll Amy in, but basically, that was it.
Our child has autism. Asperger's. Now what?
Our concept of autism was more or less limited to 'Rain Man'. Non communcative people who would bang their head against a wall. Lost in their own world. But Amy was nothing like that. Sure, her social development was not great, but she was a highly intelligent girl, very sensitive and caring. I felt I had lost my Amy. Amy was autistic.

It really is a process of grieving. You have to let go of the child you thought you had. Your child becomes a stranger. You feel at your wit's end, you have lost control of the situation. How do you deal with this stranger?
I kept this up for about a week, lost in my grief.
Amy's head teacher finally had the words to shake me up. She asked me never to lose sight of the fact that, though Amy's path was never going to be what we had expected, it was still a path worth walking, and we could join her along the way. We did not have to be a spectator to her life.
We really needed to let go of the child we thought we had and instead embrace our daughter, label and all! Try looking at her through her perspective. Let go of everything we had ever learnt as a parent, and start anew.
This helped me tremendously. It made me realise nothing about my child had changed. It was how we would deal with her, help her, from now on that had to change.
Somebody who had loads of experience in the field of autism once told me: it is OK if you get cross with Amy, you just have to learn to be cross differently!

The end of that particular school year was near. Time to evaluate and get things in order for her new teacher, making sure Amy would make a good start next term. That conversation was the first confrontation with the amount of prejudice, disrespect and oblivion to what autism means, we would have to deal with for the rest of our lives.
Amy had two teachers at the time, both part time. While one of them apologised for getting things so wrong with Amy, the other could not wait too tell us in hysterics how silly Amy had looked in class the other day. I was stunned! Had she not heard a word we said? Wasn't this behaviour completely understandable? It made things quite clear! We had to become Amy's advocates and make sure that the people surrounding her would have the knowledge to give her the proper support.
For us, this meant reading up, watching Amy, trying to figure out what made life unbearably hard for her and how to help her get through this.
And the worst of all: trying to find the right moment to shatter her illusions completely and telling her life would always be hard, telling her she had autism.

With the SEN teacher a plan was made for Amy for the coming school year. There were organisations that could help us find our way through the maze of therapy, funding, making sure her label was officially endorsed by the government so help could get started.
This made us discover a new permanent feature in our life: the waiting lists!
Yep, they are there and they are long! Who cares about your struggles, your need for immediate help. Bureaucracy is there to stay and waiting lists most certainly as well. Your problem, not theirs.

At home, we started implementing some things to help Amy. We studied everything in sight about Asperger's. One of the things we had noticed about Amy was that dogs helped calm her down when it all became too much for her.

We had the summer holidays ahead of us and while we were on our first waiting lists, we used the time to really look at our daughter. What was it that caused her to completely withdraw, what made her scared, with what did she need our help. This would help us find the proper help immediately, rather than struggling through more waiting lists.

And we saw...we saw her panic in large groups, we saw her struggling waiting for something or queueing, we saw her withdraw when people outside her family touched her or wanted to shake her hand, we saw how a restaurant became a huge challenge rather than a treat, we saw how her body was never still, we saw her distrust against the world. We saw how repetition of actions calmed her down, we noticed her hightened senses, how a simple touch could hurt her. We saw how, without thoughts, she would launch herself into things, how she would speak her mind all the time.
We started to learn about her ASD, and recognised why it is called a pervasive disorder.
One tiny step at the time we started to understand Amy's challenges.

One thing was certain, we could not do this on our own. We needed guidance. We needed people to translate Amy's autism for us.