You have to change the way you deal with this child, change to suit their needs. Bring structure to the family, address things differently, say what you do and do what you say. Be very clear. Don't use things like 'in a minute', or 'later'. It is too vague, unclear.
Rose helped us on our way. We discovered that Amy's room was a sensory nightmare. she did not like sleeping in there, she told us the colours would get into her head. Amy had chosen a bright pink wall paper with huge hearts in neon colours when we did her room up.We redecorated it in very pale blue with the occassional dolphin dotted around. This calmed things down a lot around bed time.
Mealtimes were addressed. We started looking at them using auti-glasses. If you break things up, you see all the elements that Amy experiences seperately, every aspect of it being an assault on the senses: the smell of the food, the different textures on a plate, the chatting at the table, the clanging of cutlery, every meal being different from the previous one. It was too much.
We decided that mealtimes had to be safe and enjoyable. So back to the drawing board. No more telling Amy she had to eat the food on her plate. Instead she got what she liked. Luckily she loved homecooked pasta sauce and soups. Lots of veggies can hide in these dishes, as long as you blend it all within an inch of its life. Being given the same food everyday, was a safety net rather than a bore for Amy. When this was going really well we introduced new flavours and textures. If she tried a few bites of the new food, she was given a sticker. 3 stickers meant she got to choose dessert. 7 stickers (a whole week's worth) meant she could choose the whole meal. This usually meant a pineapple pizza, but that was fine! She was allowed to get up from the table when she had finished witth her meal. Social niceties were really not important. Getting Amy to feel safe again was!
We had to break all daily routines into much smaller steps, using lists and pictos for visualisation. 'Get dressed' is too vague a term. So this became: take of PJ's, change your underwear etc.
The front door had pictures on it showing her what needed to be done before we left the house (get coat, zip up, get bag etc) and the bathroom had pictures showing her what needed to be done to have a wash.
We found out that Amy could take things very literally, so we had to be very careful in our wording. This did lead to some hilarious situations.
For example when it had been snowing and the children had all been outside to play and the teacher then hurries them back into the class room. 'Come along, children, coats off, hats off, take everything off....' Nice one for an Aspie. Amy's coping strategy was copying behaviour of other children if she was unsure what was expected. We are still very thankful that she decided that her teacher could not possibly have meant what she said...
We no longer took Amy to parties outside the house. They were a sensory disaster for her.
We learnt how to prepare her for all eventualities and events, using the Give me 5 method (What, Where, When, Who and How) and were shown how to plan for changes in a schedule.
We learnt how to always include a safety net for Amy: who can you go to when things get hard, who will take the necessary actions when you cannot.
We learned how hard it was for Amy to engage in play with others and work together with others. That sensory overload led to meltdowns, what a sensory integration disorder is and what it meant for Amy. We learned how there is safety in repetition in every situation. But we also found out that even though we repeated things a 100 times for her, the smallest change in detail made it a whole new situation and she could not apply anything she had been taught.
We were shown how to go through her day after school, using drawings we made up together, so we could clarify what might have gone wrong. This is a visual way to discuss things and it was so much easier for Amy than words. We used the ABC method in our drawings: Antecedent, Behaviour, Consequence. Together we figured out how another form of behaviour would have led to another consequence. It gave her new handles on social interaction. And visualisation was added to our vocabulary.
Spontaneity disappeared from our family. Instead we got into routines, structure, planning everything, forever scanning the surroundings for pitfalls, trying to intercept as many of them as possible. But we gained safety and trust in the process. Amy very carefully started to flourish again.
While all this was going on and we were as a family adjusting to having a child with autism, we had a huge amount of help from a very tiny dog: Katie. Such a happy clever creature. She was a joy to work with. When the assistance dog trainer, Joop, came to meet her for the first time, all he could say was that she was too cute!
The bonding between Amy and Katie was the first priority on the way to become a fully fledged assistance dog. Amy's attention span was about 10 minutes. During this time he would work with her and then he would teach me how to work with Amy and Katie until the next session with himself.
The main thing was that Katie had to work for her food, and Amy had to be the main food provider and the person who would give her the treats. One of Katie's jobs would be 'making contact', so unlike other assistance dogs, Katie should be allowed to be cuddled. But only on Amy's terms. Amy would have to give permission. This meant engaging in conversation with strangers! Something she tended to avoid at all cost.
But somehow she did it! She explained about Katie, about her autism and before we knew it she had this same little titbit of exchange with an awful lot of people.
Katie needed to be exposed to as many situations as possible. But up till now home was the only safe place for Amy. But again...it happened! She came along to shops, restaurants, crowded places.
She would be exhausted afterwards, but she did do these almost impossible tasks!
Katie had been with us for all of three weeks when Amy sidled up next to me, cuddling Katie. She leaned into me and said: 'Isn't it wonderful, Mummy? I can just be myself when I am with Katie'. I can tell you, when your 7 year old tells you this, your heart shatters! When a child this young knows exactly she cannot be 'herself' because the world thinks that's weird, the pain you feel is awful. I did not show her how I felt, held her close and agreed. 'That is indeed wonderful'
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| Training Katie, Focus and control |
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