I've never gone this long before between blog posts. The longer I go, the harder it feels to get going, so I thought tonight I'd just write, even though my thoughts aren't that organized.
Why has it been so hard to write? It's hard to say. Janey has been herself---which is to say, up and down, here and there, but not really that much different than in the past. We had a few very, very rough patches with tons and tons of crying and screaming, but also some wonderful patches with lots of happiness. We've also had times of her being awake for nights in a row, and other times of lots and lots of sleepiness. As the years go by, the most consistent thing with Janey is her lack of consistency. She is very, very cyclical, and although it can be hard to see in the middle of the tougher cycles, it's helpful for us to remember that even the worst times get better after a while.
I think part of what is making it hard to write is that the closer Janey gets to 22, which is when she will no longer be in school, the more I am terrified of the future. From what I can see from others in our state, it's very hard to get anyone into programs. We are aiming for a good day program, but even without looking for a residential placement, I hear so often of others getting nothing---nothing at all. From how Janey does during vacations and even to some extent weekends...well, that will not be good.
I am not very political, but I have to say the current scene here in the US doesn't seem to be one that cares much about people like Janey. I worry that the things that make us able to get from day to day will disappear---the social security that allows us to afford what Janey needs, the structures that will at least give us a shot at an adult program for her. And I fear very much that those younger than Janey will not have a public education like she did. We have had so many wonderful teachers, therapists, aides...so much love and caring from extraordinary educators. I despair when I think of the possibility of that not being the case of others like Janey.
And my own ageing---that is scary. I will be 60 next year. It seems impossible to believe. I don't mind getting older, but I wake often in the night in terror thinking of life for Janey when Tony and I are gone. She has her brothers, and I know they will do all they can for her, but I think what scares me most is that she won't understand some day when we are gone. We lost Tony's brother last month, and although of course we tried to explain this to her, I know she has no understanding of death.
There are so many times lately when it all just gets to me. Sometimes I let myself fall into feeling the unfairness of it all---a useless feeling but one I will admit to. Why is Janey autistic? Why didn't she progress much at all after her horrible regression at three? Why are things still often so hard with her? Why does it seem impossible to completely toilet train her, to help her speech get better, to keep her from screaming during the tough spells, to get her to sleep during the awake spells? What are we doing or not doing? I feel like I used to be better at staying positive.
So...maybe this is why I have had such a hard time writing lately...fear, discouragement, tiredness, worry.
However, through it all, there is luck and there is love. I am so lucky to have the husband I do, the most wonderful father Janey could have ever had the luck to have. I am lucky to have the friends I do, including the ones I have made through this blog. I am lucky to have my amazing sons. And Janey, I am so lucky to have you as a daughter---my beautiful, mysterious, fascinating, frustrating, amazing daughter. The fear I have is because you deserve everything. You deserve a world that values you, that will protect you, that will invest in caring for you, and for all others living lives like yours. I will work toward that world until my days are through.
