I have started and deleted quite a few posts lately. I worry about how things I write will be perceived. I never want to sound as though I'm complaining about my life with RJC. While it's certainly complicated at times, I am very aware that there are families dealing with much more than ours. More than that, I would not want my life any other way - I adore, love, cherish, and need both of my girls, just as they are. I started writing in the hope of bringing an awareness of our successful moments and less than successful moments, so that when our family or other families with a child diagnosed with autism ventures out in public and has an issue or two, there will be compassion instead of judgment toward us and our children.
As RJC gets older, I am incredibly aware of the responsibility of raising a child who will never be able to be independent. It is beyond overwhelming. When she hit the age of 21, it became super-duper overwhelming (yes, that is a Barney the Dinosaur reference). Most of my days look like everyone else's days. I go to work, pay our bills, do the grocery shopping. I visit with friends, chat with family, and take care of business. There is an underlying anxiety, however, that generally causes me to feel distracted and deal with stomach issues and sleepless nights (such as tonight - it is currently 4:30 a.m. and I've been up for an hour and a half) on a pretty constant basis. I cannot remember the last day I had where I wasn't worried. I've always been a worrier, I swear I was born that way. Even as a young child I could take a small issue and turn it in to the world ending in my mind. I've mastered that now, thank you very much.
So the question is - how to get through it? Until I started to really focus on that question, I did not know the answer but I have discovered through a great deal of soul searching that the way to get through it is to count on the people around you for help. That can be tough, but really, isn't that what the world is about? Helping each other get through it.
Here's who I count on:
1. My husband. He is much less anxiety ridden and has been known to talk me off a ledge here and there. He tends to deal in facts and much more in the here and now. While my imagination takes me to all sorts of bad places, he pulls me back to where we are at the moment. I remember years ago when RJC was Kindergarten age, I was in high anxiety mode. "What about" and "What if" and "How will we" was just oozing. He finally said something like, "Can we just get through Kindergarten?" Ok, the man had a point. While I find it beyond amazing (ok, and in truth, sometimes annoying) that he can be practical and logical, I am also grateful.
2. Moms of special needs children. Over the years I have been blessed, and I mean truly blessed, to have met some amazing moms of children with autism as well as moms of children with other special needs (ok, on a personal note I don't care for that term but haven't found a good replacement yet). We all parent differently, we all deal with different issues, but we all understand. It is a deep understanding that brings with it an emotional connection. We may not hang out the way other people do with their friends (we are often limited by child care issues), but we are there for each other. It is amazing how caring a community this is. When we do manage to get together, at some point talk is inevitably about our children. We don't offer sympathy, we listen and we empathize. We don't offer solutions, we offer strategies. We don't compete we support. Communication is easy in that we speak the same language. While it's not often we can get together, when we do, I leave feeling "I've got this." And I know that on those days that I may need help, there are people I can reach out to for help. There are also days that somebody will recognize that I need help and reach out on their own.
3. Family. We have been very lucky to have a family who understands if we cannot be at a wedding, funeral, Bar or Bat Mitzvah, birthday etc. Both my side of the family and my husband's side of the family are accepting, concerned, and supportive. Nobody takes it personally if we cannot make a visit happen - we have never once had an issue with a family member who is annoyed by our limitations. On the flip side, when we do attend a family event, there is no pressure. Nobody expects our gal to behave perfectly nor does anyone flip out if she doesn't. We've actually been to weddings (we never take her to the ceremony but we've partied with the bride and groom), family dinners at restaurants and plenty of visits at people's houses. We've celebrated Passover and Thanksgiving together. By far, the most memorable family understanding moment - when she literally went through a wall at a summer house that somebody was renting. Um. Yah. True story. AND that family invited us back the next summer and still invites us places! We once spent a weekend with something like18 people one big house and subjected them to Barney videos...over and over and over again. They, in turn, helped us at the beach so RJC could play in the water and I could play Scrabble. I sure came out ahead on that one! Our first family vacation only came about because of a family member who insisted that we spend a week with him at the beach. Before that we had never even attempted a vacation. It is a cherished memory. Our family has accommodated us in so many different ways - they've gone to restaurants that they know RJC can handle, even if it's not really where they want to be. They've sent us articles or links to websites they've run across; not because they think she needs "fixing" but because they care about our gal. While our family is quite spread out now, we still find a way to stay in touch and best of all, get together.
4. Friends, special needs organizations, synagogue, and various professionals. Over the years we've built relationships with friends who do not have children with special needs but who completely and totally "get it." They understand when we take our own car in case we need to dash. They come miniature golfing or bowling because they know RJC can handle those activities. They ask about our gal and are truly concerned, but not in a "poor you" sort of way. In a true friendship sort of way. They cheer us on and they feel our pain.
We've been involved for many years with Special Olympics - cannot even begin to say what that has meant to our entire family. That may need a separate blog post.
Friendship Circle offers programs so she can participate in Jewish holidays as well as general fun stuff - like cooking and drum circles. There are program that are not only for our gal but for us. We've met awesome teenagers who are incredibly capable of getting her involved in the activity of the day. We've also met people who we can simply chat with while our gal is engaged in some fun and safe activity. It's fun for her and serves as a bit of respite for us.
Our synagogue has also been an amazing source of inspiration and support. It's a safe place for us to take RJC where she is accepted and appreciated. She can actively participate in the service. By far, the most unforgettable day that I still think of as a miracle - her Bat Mitzvah. Amazing. We'd have never attempted a Bat Mitzvah if we were left to our own devices but we were encouraged and supported and the people at synagogue never waivered on the idea that she would be successful. I still look back on that day and can feel the emotion.
We have spent years developing relationships with professionals who understand our gal. Doctors, dentists, even hospital personnel (shout out to Ct. Children's Medical Center)! In her younger, more volatile days, we were given appointments at times when the office was especially quiet as there was a true understanding of her needs. We hunted around and found those professionals willing to accommodate or gal. It's stressful enough to have a sick child or child in pain, so having people to make things as easy as possible? Priceless.
There are people who take RJC out and about in the community which gives her the opportunity to do things that she'd never do with us. She meets new people and makes her own personal connection. At the same time, this gives us a chance to spend time together as a couple or spend time with Naomi without the distraction of how to keep RJC amused and safe.
5. Work. Sounds strange, I know. However, when I'm at work and focused on what I'm doing, it's a distraction from the worry. As a side note, I also happen to be very lucky that I work with caring people and have some flexibility. It can be overwhelming in some ways to hold a full time job while trying to take care of everything that needs to be done with RJC (there's appointments, phone calls, and paperwork galore) but work is also a place where the focus is on something other than autism.
I think about the world as it is, the future of both of my girls, and what I can do to get us through the day safely and it is scary and overwhelming. The key is to remembering that I am not alone. And together, we will get through it.
No comments:
Post a Comment