I generally look at the bright side of things. It drives some of my closest friends crazy. This post, however, is about the reality of the future for my gal, RJC, and I apologize ahead of time for the less than perky attitude I have about this. I considered not writing it. I've tried to be careful of the feelings of people reading this, especially those with younger children. It's really important to me to keep positive and look at all the awesomeness of having my RJC in our lives. Yet when I started this blogging adventure I promised myself that I would stay genuine and include the ups and downs of our lives. If that included showing myself in a less-than-really-good light, so be it. I would be honest. This is where I am now...so I am sharing.
This month RJC turns 21. The 11th of this month actually. I started this blog last August when I was just considering what life would be with a 21 year old child with autism. No more mandated services. No more school. I was wondering what I'd find and how things would be for her. It's been quite the year. I've learned alot about "The Adult System" yet still do not feel like I can comfortably navigate through it and be the best advocate for my girl. I've learned alot about myself. Not all positive. I've learned alot about my RJC. Always interesting and always complicated. In fact, the overall lesson of this year is that life with RJC is, and always will be, interesting and complicated. It's finding a sense of peace with this fact that is the challenge. And right now I am soooo losing that challenge.
When I think about her long-term future - ten, twenty, thirty years down the road and more - I find it so terrifying that I literally become ill. Having seen what I've seen and spoken to other parents whose children are already in The System, I cannot imagine what her quality of life will be. It worries me that at some point she will need to find her way without me and I am concerned that I've not prepared her for that. We are making small steps toward this, I suppose, with the two weekends away and the planned two weeks away at camp this summer. She doesn't know about those two weeks since separation from me causes such high anxiety for her that it's not fair to upset her this early. Not to mention the fact that I have my own anxiety around other people caring for her. Even so, temporary vs. permanent - a whole different ballgame. How do we really, really prepare her for a more permanent separation? I think about it. I consider it. I agonize over it. I wake in the middle of the night and am sick over it. Literally. Yet I've got nothing. I don't like to discuss it if I can help it, even with my husband or closest friends, as it is such an emotionally raw issue for me that I can barely have a conversation without becoming extremely emotional. I am not rational or practical about this issue. I am concerned that I am being selfish and only thinking of myself when I decide to play the turtle and not deal with this issue. I push it off, telling myself we have plenty of time. It feels morbid and somehow unlucky to consider the thought that something will happen "prematurely." On the other hand, I feel incredibly irresponsible in not making a long-term plan now, so that she is prepared. It's quite the quandry.
Thinking long term is an emotional and complicated process. I have at least come to one certain conclusion. There is no "right" or "wrong" way. Everybody deals with the issue in their own time, in their own way, with their own child's needs being the most important consideration. Truly, I have never met a "selfish" parent of a special needs child. I have heard parents speak only with passion and concern about their child and how difficult it is to make decisions concerning their child's future. I've never spoken to one single parent who did not, very carefully, consider every angle about their child's well being - emotional and physical - when it comes to makind decions about their child . They did not consider their own needs but only the needs of their child. How awesome. I have learned from them and have been grateful to them for leading the way.
That having been said, why is this so hard? What I've learned in this past year, up close and personal, is that there are limited options because we are limited by resources. I knew this before but I was so focused on getting us through the school years that I had not spent any time really researching the adult word. Now, with my gal on the brink of being thrown into that world, the reality is setting in. It makes me sad. And it makes me mad.
These decisions would be so much easier - or at least less gut wrenching - if there were programs available that supported whole familes. If there were a recognition that this is not about one person, but about a family dynamic. Adult programs that would include parents in their children's lives on a daily basis, while working to help the child gain their independence, allowing the parent to slowly get a sense of peace around not being the primary caretaker on a minute-by-minute, day-to-day basis. Where there is a slow process of separation for the benefit of all family members' mental health. What a concept. From what I've seen, it does not exist.
I daydream that we will be able to develop a program for RJC and her friends. I can picture it. I see a big farm with horses (she loves riding and it getting quite good at chores) and a greenhouse, small cottages surrounding the area that are quaint yet spacious for the residents. A guest house for when people want to visit. Perhaps a small bed and breakfast that the residents can help to run. She chooses work based on her ability and her preference. I picture a community area where everyone eats their meals together, planned by a licensed nutritionist who understands the complicated issues around food choices. There is an indoor swimming pool complete with a hot tub (her favorite), snack bar with healthy choices, ping pong tables, table games to choose from, a reading area with plenty of picture books, a computer lab, and a music area. There is a sensory room. The staff are well paid, have excellent benefits, and are motivated to work with my gal and her friends by their passion for helping people fulfill their potential. Various therapists are available - speech therapy, OT, PT. There are classes for those who want to continue making academic progress and classes focused on life skills. Caring and trained medical and dental staff are there on at least a monthly basis and at other times they are accessible when needed. Visiting artists run workshops. I see vans that take her and her friends into town so they can enjoy the movies, going out to eat, shopping, getting exercise, and participate in community events.
Then reality sets in because unless we win the lottery (with a very big jackpot) we have limited options for her future.
I do not know what will be. On the positive side, she has a day program to start after her graduation and I am very happy with that choice. It will be an adjustment but we can do this. It's the type of adjustment that will be somewhat tricky but definitely attainable. It will have its ups and downs, no doubt, but this one transition is in our realm of capabilities.
For the longer term? I can use some help. Anyone?
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