Its been a good week of support groups this week and one theme to seemed to grab me about some discussions was how we as parents always have to find a balance between what our kids are capable of and what they struggle with.
If you've filled in any form about your child with Autism you'll know it becomes a time to reflect on the worse case scenarios and a lot of the time thinking of the negatives. I attended an annual review the other week for my sons EHCP (Education Health Care Plan) at his college. My son also attended and was only able to give limited input but I do love the fact that he is included in these discussions whether he can answer questions or not, after all it is his life.
I came away with mixed feelings really knowing that his progress is really good but then I feel for him on the topics he has to work to improve, as it's always in the back of mind as to whether he'll ever achieve them. That's just negative thinking though isn't it? It does get you down though sometimes.
I had another discussion this week about adulthood and Autism. My son turns eighteen this year so for me this made me think about everything to come. Will he ever be independent? Will I be caring for him the rest of my life? What happens at eighteen? Do I still control his decisions as a parent or do I need to consider a power of attorney? These are all things I will consider in the coming months. I can tell you though I will continue to try and help him to be as independent as possible after all who will look after him after I'm gone?
I'm so used to making a lot of decisions in his childhood and it is sometimes hard to shake that responsibility off. If you have other children who are not on the spectrum then they progress into independence gradually and us as parents learn to let go gradually too but with our kids with Autism I personally feel I'll never let go.
For now I know I'm the best person to care for my son and I've decided that I will just cross every bridge as it appears, I'll take advice and listen to others who have been through this stage already as that's the best thing I can do and hopefully things will work out. I think I'm going to find out how different the adult services are compared with children's services and I feel if it needs shaking up maybe I'm in a situation where I can along with my fellow parents. Can we conqueror this? YES WE CAN!!!
Whenever I feel a bit down or beaten by Autism I start to think about what can be done and bring it around to the positive. I have to as being positive is the only way I can go forward, if the provision isn't there and available for our kids then lets make it happen. Let me know if you're fighting for services at the moment, feel free to share your stories.
For now though take care and please feel free to join me tomorrow for Pass the Remote Sunday.
Every Saturday will be about Autism, family and life.