First the hope. Yesterday, we visited a respite house a few towns over. Janey's first grade teacher had told us about it, and I did an online application and got an email inviting us to visit. It was wonderful. The house is on a college campus, and is all set up for being a place for children and adults with disabilities to spend time and have fun. There is a great rec area, a fantastic kitchen and a floor full of dream bedrooms, for overnights they sometimes have, and a lot more. And best of all, they actually have openings! Janey started the tour by freaking out of her mind, screaming hysterically. So they got to see that. She calmed down quite quickly once she saw some of the great things they had there, and tried every bed in every bedroom and by the end was hugging the woman who works there who gave us the tour. We signed her up for two Saturdays this month. One will be a trip to the Children's Museum, and another to a local beach. We are holding our breaths---it almost seems too good to be true. It's exactly what I had wanted, and even wrote about, and it actually exists! There are scholarships available, but if we can't get one, with a little belt tightening we can manage---it's not crazily priced. There are 6 overnights a year for girls, and we might even try one of those next month, and there are vacation week camps! I keep thinking something will go wrong, or Janey will be too much for them to handle, or SOMETHING---it really feels like a dream. I'll write more about it after the 12th, when Janey goes for the first time.
The holiday blues---that was today. It's the 4th. Tony and I felt a little down all day, and talked about it tonight. Lots of reasons, but a big one is the isolation that having a child with a disability brings, especially on holidays. Gradually, we have stopped going almost anywhere. When we used to go sometimes to cookouts or the like with family and friends, it was almost always a disaster. Janey would get hysterical, and we couldn't stay long. Most all of our friends and family now also have littler kids around---grandchildren or kids of their own. We can never be sure how Janey will act, and I think there is fear on both sides about that. We don't reach out to go places, and we don't get invited, probably because people know we wouldn't go anyway. Even if somehow Janey acts perfectly, we are still on edge. We can't ever relax. Someone has to be following Janey at all times, within an arm's reach, especially at other people's houses or public places. And so we stay here. And usually, we are okay with that. We aren't hugely social people. But on holidays, sometimes it feels a little sad.
We were planning a family trip to a beach tomorrow, but talking about it tonight, we decided to make it just Tony and the boys. The beach is quite a drive, and once there, it's not like we can all have fun as a family. I want the boys to have relaxed, fun, happy times with their father (and with me) and if that means us not all being together, it's better than just skipping the outings.
The two themes tie together there. If the respite works out, and Janey can have fun, and be a place where there is paid staff and volunteers that are there just to take care of her and the other kids, then we can have some time with just the boys. We can relax a little, but it's bittersweet. It's not a full family without Janey. I had a moment just before going into the respite house of an overwhelming feeling of sadness. I was so happy to be getting a chance to see about the respite we've craved, but it felt sort of...I don't know the word. They start taking kids at 8, and I guess that's because that's an age where you know it's not something the child is going to grow out of. This is our life, this is Janey's life. We are at a point where we need more help than just home and school can provide. And in a way, that breaks my heart, although I am so happy there are wonderful people who will be able to give us that help, and give Janey a great time at the same time. But it's not normal family life. Or maybe it is---"regular" kids go to activities and sleepovers. Janey will be able to also---just with a little more support. Maybe I think too much about things. Maybe I am overthinking this.
Either way, Happy 4th of July to all my USA readers, and happy start of summer to everyone!
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
7 comments:
I know how you feel. It will be ok eventually and I think you have a good outlook. I know what it is like to not go on family vacations or not be invited to places you use to go to.
It is ok though because you are on a new journey and you will find different ways to have your family time.
We have been getting a respite service from the community since the beginning of the year. We get 3 days with two overnights almost every month.
It looks like Ville has been taking it well. Like the social worker said, it is not just for us to have a break, but also for Ville to prepare him for the day when we are no longer capable of taking care of him.
The first time felt really strange after being on the "alert mode" for thirteen years. You suddenly have so much time without interruptions that you are not sure, what to do with it.
No need to feel guilty or overthink.
Suzy, I know this is a big step and in some ways a hard one. From what you've described, though, it sounds like it's a really important thing for you all to do. As I read your blog post, I couldn't help but think about the history of all this--and how not so very long ago, families with who had children with developmental disabilities had little option but to turn kids like Janey over full time to institutions. It's amazing that there are now intermediate options--ways that you can get help so that you can pay some attention to yourself, and ways that Janey can perhaps learn new ways of getting by in the world. Love to you.
I also think the respite care sounds like a wonderful idea.
But I'm thinking of just the daily things you write about that are difficult--not just holidays, but trips where you no longer feel able to manage Janey by yourself since she has gotten bigger and stronger.
Have you ever thought of looking into hiring a one-on-one aide to accompany you? I know that this is the model for many school programs for disabled children. The aide's sole job would be to keep eyes on Janey and help with any management issues.
Boston has so many college students, who need money, that I think you would have a large pool to choose from.
Just a suggestion. Best to you. I love your blog.
Mary
Laura, I've thought about that a lot---how in the past, it wouldn't have really even been considered an option to raise Janey at home, then the pendulum swung to a feeling that if parents were truly devoted, they should be able to take care of their kids totally themselves, and be endlessly devoted to them, despite any toll it might take on them or on siblings. I'm glad society seems to be arriving at a midpoint, where people like Janey are part of the family, but it's understood that the the families need some help to make this happen. I do think it's important for us all. Antti, I love hearing about how respite is going for Ville. That sounds wonderful. And it's a great point that it helps our kids too. "Normal" kids would be starting at their ages to live lives a little outside of home and school, and our kids need to start doing that too. I'm sure it will be amazing the first day Tony and I have with just the boys! You are right, Dena, it's a new journey and we will have to readjust a little, if it all works out, and figure out how this new stage will work for all of us!
I've thought about the aide, Mary, like a mother's helper type thing. At this point, I don't think we could afford it, and there isn't really money available to help with the cost. I can also picture that I'd have a very hard time not staying right next to Janey! But that is something I bet I'd be able to overcome in time, and I think in the future it might be pretty much necessary if we are going to take Janey out at all, when she gets big enough so holding hands can't contain her---which is getting close! Thanks as always for your support, Mary!
I'm so happy to hear that the visit to the respite care center went well! It sounds like an amazing resource and something that your family, and especially Janey, will grow to enjoy….
I hear you about the holidays. We often were in the same boat…just hearing about other families plans was almost painful (many plans involved multiple families getting together, fireworks, etc. - things my DD,at the time, just could not bear). The good news is that after many, many years, as we have slowly gotten back into the fold with our old friends again, almost all of our friends have welcomed us with open arms. (We did have one couple kind of drop off our radar; not sure if was related to our long "social" absence or other circumstances).
The true friends you have will always understand your child, your need to have to take two cars to places (in case one of you has to leave early), or the special conditions you need in order to make the outing successful. Sometimes I felt like *I* put up a huge barrier…not wanting to inconvenience people. I don't think we truly ever did make things difficult for others , but I have come to realize that many of our friends missed us (*all* of us!) and would have welcomed a visit from us, our DD in tow, regardless of all the "conditions" we put in place.
Maybe the respite care will help with some of that..you need to have that energy to brave social situations, regardless of how "relaxed" it is.
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