I didn’t see it at the time, but Early Intervention, kindergarten and special school all helped me accept Julian’s disability at the same time that they were helping him to extend his abilities.
Now, as an adult, attending disability support programs, and getting one to one support from support workers his own age, he is extending his social skills and enjoying his identity outside of his family.
Julian has a right to integration into mainstream society, and with one to one support he can enjoy an activity like going to a hotel and playing pool. He has a right to lead the life he wants. We found out what he liked by giving him the opportunity to try different things. Sometimes he clearly led the way in demonstrating his needs, as he did with dolls, encouraging me to find him Sue, his companion puppet.
He has a disability and that’s okay. Like many young people, he’s keen on YouTube. He gets stuck on watching videos. Sometimes this can be a problem, because his disability makes it challenging for him to cope with transition from one activity to another. Like getting up from his computer to have dinner, or to get ready for bed. That’s where I need to help him with advance notice, reassurance that he will be able to return to his favourite activity, and friendly encouragement to partake in a meal or have a shower.
It’s taken many years for me to learn this, but now that I mostly have the knack of communicating with him on his wavelength, life with Julian is almost normal. The years are flying by. I’m in my sixties now. The next challenge will be how he is going to live without me.