Wednesday, December 31, 2008

New Year, new beginning and all that stuff...

New Year's Eve has never been my favorite holiday. I tend to think too much about where I thought I'd be by this time. This is especially true since autism came into the picture. Every year I've thought this would be the one when we'd reach recovery. Becca's getting older and I keep thinking we're losing precious time. But then, I have to think about all the wonderful changes that have occurred this year. GFCF is bringing about improvements, Becca has had several little language explosions, and we're getting much better services and therapies. We're also no longer dealing with our school district! Getting her out of the school system was probably the greatest change we could ever make.

Right now we're enjoying a mini-vacation, visiting my family in Rhode Island, and as far as vacations go it's not too bad. OK, it's New Year's Eve and we're snowed in, but it could be worse. The hotel room is comfy, and I consider booking the hotel rather than actually staying with family a real sanity-saver. Becca will never tire of the hotel pool, and I've enjoyed the hot tub. Yesterday we went out to breakfast, went ice skating, and saw a beautiful Christmas light display. Sounds almost like a regular vacation, right? Well.....

Will we ever be able to go to a restaurant and not ask to see ingredient labels before ordering something as simple as a hamburger? Will we always have to explain what gluten is and how cross-contamination occurs? It's not so bad when it's just Ron, Becca, and myself. But we're visiting family and friends here, and we are constantly explaining to them why we can't eat in certain restaurants. Then there is the issue of Becca's stamina. We can't always make plans in advance because we don't know how much Becca will be able to do. Ice skating had to be cut short after just a half hour because that's all she could handle. Ron and I are used to this. We enjoy what we can and make the accommodations Becca needs. But this is no fun for the rest of the family. This has happened on so many visits here, and not everyone gets it

I also feel my son is getting short-changed. James is twenty-five, and he really does understand Becca and her needs, but I can't help feeling this isn't fair to him. I know it would be worse if they were close in age and he had to experience this on a daily basis. He's an adult and has his own life, but I would still like to be able to be there for him and also spend time with him without autism always being our main focus. I find it hard to even have a conversation with him or with anyone without autism and Becca's needs being brought into it. And it's not just when we visit him here. When he comes home for a visit he finds a home that is centered on Becca's needs. I can't cancel all of her appointments. He will come along with us to speech or OT. Not once has he ever complained, but it can't be much fun for him. Maybe I wouldn't feel like this if he hadn't been through so much in his own childhood. His early years were so traumatic. Maybe that's why I still feel he needs some undivided attention even though he's an adult. He was still a teenager and living at home, struggling with his own issues, when we first started getting services for Becca. I found it so hard then to meet the needs of both a teenager and a baby with complex needs, so maybe I'm still feeling some guilt over that.

At least James does understand. I can't always say that for everyone in our life. There are those that avoid spending time with us. We're probably not much fun to be around. There are others who are disappointed in us because we are not meeting their needs, being supportive of them, etc. I guess New Year's is as good a time as any to take a good hard look at the relationships in my life and really think about what is healthy for my family so that we can move forward. I have to stop putting myself in situations with people where I'm constantly walking on eggshells. Ron and I have talked about this at length and we know we have to make changes. I have to stop pretending that everything is normal and that I can do everything and meet everyone's needs when we really have almost no real support. For my family's well-being and my own sanity, this is one New Year's resolution I can't afford not to keep.

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Before autism