I drove past a billboard today that read Don't burst their bubble, give them some space. It was directed towards drivers of course. Yet it is certainly applicable to those on "The Spectrum".
The whole thing with my daughter is about getting the right space at any given time. Amy can handle being close to other children and seems to enjoy the chaos of several children playing in a small space together. How long this will last is anybody's guess. The first push is a sign that she has exposure anxiety and wants to get out of there. Yet instead of just removing herself, she will carry on actually physically pushing children out of her massive air bubble until someone - usually me - removes her. Except for last week when she told her friend Tina on a playdate that it was time to go home! We've been telling her to use her words: at least she was honest! Tina stayed for another forty-five minutes. Amy asked her to leave another time and when she didn't she started pushing Tina. I was impressed that Amy was able to tune into herself and recognised she was sensory overloaded - she did warn Tina several times before the pushing started.
My husband and I both did Celeste Littek's course Introduction to Advanced Strategies: Implications for Learning last Thursday. It was very good and covered everything you need to know about autism. Basically it saved reading fifty or so books or researching for hours on the Net. Celeste is a great speaker. She has over 20 years of personal and professional experience in ASD and knows her stuff. She currently works with the wider community in developing training courses for those who care for children with ASD. There were 84 on our course and only a handful of parents - most were educators/teachers. The parents were nodding their heads in recognition of some of the autistic traits and the educators gained an invaluable insight into the world of autism. Amy's Head Kindy teacher sat next to us which was great. It was interesting for her to learn a little more about Amy pre-Kindy.
In a way the course was like a summary of our journey thus far with Amy. It was emotional. I am still processing some feelings that were stirred up as a consequence of the course. Some say they go through a grieving period when their child is diagnosed with ASD. However I didn't. I just got on with it, and did what I had to to help Amy. I had a lump in my throat a lot of the time when dealing with specialists for the first few months, but I just carried on. Now I feel like I am a bit of an emotional mess as I acknowledge what we've been through as a family while carrying on with the ASD challenges that are part of our lives.
On Friday I also did the Introduction to Advanced Strategies for Autism Spectrum Disorders. This was also taken by Celeste and was great too. But admittedly I was still reeling from the course the day before so found two days of autism courses quite emotionally taxing. The second course basically named a lot of Amy's ASD traits - and helped me understand them more. Both courses confirmed that Amy's diagnosis is correct and that we are on the right track towards helping her. A woman I met on a business course a couple of years ago sat next to me. Her son had been very recently diagnosed although he is a bit older than Amy. She had the tissues out and I told her not to worry, that I had shed a few tears myself the day before. It certainly isn't an easy course for parents to do.
I do agree with Celeste's message which is not to change the child with autism - but to help them. Apparently this is what the autism sector has said. They know they are "different" - but they don't want to be one of us!
It takes a lot of energy for the child with ASD to act the "appropriate" way socially. Celeste said to think of socialising as a second language for these children - it's not easy for them to use, doesn't come naturally and when they are stressed - it is going to be very hard to understand what they are saying - in their own language. No wonder the poor things get frustrated.
Amy has a lot of people in her face right now egging her along so she can fit comfortably in her social world. Yet I know she feels the pressure. It hit me how pressured she was feeling when after an anxiety-filled morning at home with us, her parents, one morning - she completely relaxed with our neighbours (our respite carers) when my husband and I went out for coffee. I realised there are no major expectations put on her there and that she can just cruise around and hang out with the three children aged seven to eleven years old.
Home should be a sanctuary and I've been trying to recreate that for Amy.I have been playing a lot with Amy - nothing new there, I've always played with her. But I've been role-playing and speaking through her toys. It is exhausting for both of us at times. So I'm endeavouring to allow time in our week when the two of us can just "be". I feel I have a certain amount of pressure on myself to keep Amy's progress moving along. When one of the specialists came into our home the other day and forced Amy to look her in the eye while physically moving her head I had enough of it all.
Amy has several social stories now. They are effective yet I'm aware they could be over-used. At the beach the other day, she was paddling in the water in her clothes. I told her not to go out into the water any further and she said "Yes Mummy" followed by "Write a story about that? The beach?" Obviously she has picked up that the social stories are basically about correcting unwanted behaviour! She is on to it more than we realise a lot of the time.
I'm looking forward to a meeting on Wednesday with the Head Teacher at Kindy, the early intervention teacher, CDS (child development services) and myself to make some goals for Amy for her next year before starting school. I will be calling the shots. After doing Celeste's course I feel it's important that Amy isn't pushed too much. Celeste did share how her nephew had post-traumatic syndrome as a result of some negative interventions and I could see how that would happen. I don't want Amy to feel like she's not good enough or that she needs to change. All I want to give her is some direction socially so she can fit in as naturally as possible with her peers.
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