by Ilene, My Family’s Experience with Autism
I learned about the Oxygen Mask Project about 3 weeks ago. My first thought was, “That’s not for me. I can’t do this. Everything I do is about my kids – they come first, no question.” Then, about 2 weeks ago, I came to a realization. I NEED this. I have to start thinking of myself – maybe not first, but at least some of the time. My kids are in full day school and preschool programs. They aren’t by my side 24/7, even though they may be on my mind. I need to find some time where I can simply be “me”. So, I decided to try it, and immediately went to the Facebook page and asked for help on how to start.
You see, I didn’t even know how to START. That’s how far gone I was. I tried going for a drive which, in the past, is one of the things that I would do to relax. All I could think about the whole drive was autism, schools, placements, IEP Meetings, etc. You see, parenting a special needs child is all-consuming for me. I am reminded of a class project from 8th grade Sunday School. The teacher asked us to find 3 words to define ourselves (individually). And, most of the class chose words like “American”, “Jewish”, “Male/Female”, “Student”, etc. For the last 2 years, I have been defining myself as an “Autism Mom” and really nothing else.
Now, I’m not saying anything AGAINST being an “Autism Mom”. And I don’t think I’m ever going to stop being one. I love my children more than anything and will do whatever I can to help them. Now I’m choosing to help them by helping myself. “Ilene” will be an “Autism Mom”, but will also be a “Friend” and a “Wife” and a “Human Being” who loves to relax by a fireplace and watch her mindless sci-fi television shows or listen to Harry Potter books being read to her by her husband or, when he’s not available, by Jim Dale on the CDs. I can still be a blogger and a wanna-be parent advocate on the autism side of my life. But every day needs to be about more than that.
30 minutes a day. Right now, that seems to be all I can handle. And how did I spent that 30 minutes yesterday? Not by going clothes shopping or going out for coffee, but by helping my feverish NT 6.75 year old complete a Lego project when he stayed home from school. My job was to locate the pieces he needed from the pile on the table, and he did the heavy construction. It was fun, and it had nothing to do with autism. And I got to spend some quality time alone with my firstborn child; something that just doesn’t happen anymore, either because he has to share my attention with his brother and sister or because he would rather spend available time with his friends. It was a good 30 minutes.
If I can do it, then anyone can. There are plenty of excuses not to try. Believe me….over the last 2.5 years, I’ve tried them all. But, if you dedicate yourself for just a few minutes every day even after the kids go to sleep…..read a book just for fun……watch a movie you wanted to see but just couldn’t take the time to go the theater when it comes on TV……make a phone call to your best friend who you haven’t spoken to in months because your kids are being too rowdy for you to have a conversation…….all of these little things count.
Taking care of yourself will make you a better parent. I know this. I’m still working up to doing some of the “big things”, like leaving the house without the kids with my husband (and leaving the kids in someone else’s care) without talking (or even thinking) about the kids. I even know people who take overnight trips without their kids. I’m not there yet. And that’s fine. Hopefully, that will come (well, maybe not the overnights). Taking small steps is where I have chosen to start. Now it’s time to see where that will lead.
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My name is Ilene and I’m a happily married stay-at-home-mom to 3 wonderful children. My eldest is a typically developing 6 year old first grader. I also have a set of girl/boy twins who are recently turned 5, both diagnosed with Classic Autism. My daughter has also been diagnosed with ADHD.
Life is not what I imagined it would be at this stage, but it’s still my life, and it’s good. We have good days and we have bad days, just like everyone else. I started blogging to cope with things not progressing the ways that I wanted them to go. Sometimes I vent about problems. Sometimes I share in a glorious moment. Sometimes I try to educate others. It really depends on what I feel like saying when I sit down at the computer to “blog”. But I do promise that everything I write is honest and heartfelt, even though I may contradict myself from time to time as I learn new things.
I hope to share with others what we go through. And I hope you enjoy reading our stories.
I understand completely! I recently felt the same way and realized that I just wanted being ME anymore. We need to all work together and keep ourselves (along with our sanity!).
I had sworn this would never happen to me — I’ve seen it elsewhere but somehow felt I was immune. None of us are. Baby steps…..
Oh exactly, Ilene! I tell myself that I DO indeed do things for myself but when I think hard about those things well perhaps not so much. For example, I LOVE to read! Strolling through a book store is one of my most favorite things to do. I can’t remember the last time I bought a book for myself without also purchasing a book that is somehow autism-related. And it’s the autism books I read first and never seem to get to the ones just for ME! My hubby and I do try to make time for each other by watching our sci-fi shows together but usually that is at his prompting (which I am ever so grateful for!). Maybe the Oxygen Mask Project could have a side-forum for us mums to chat about our “mindless sci-fi” shows or favorite books!
LOL!!!!! My husband and I are FINALLY starting to get caught up (for the last year or so) on shows that we just stopped watching since becoming parents (thank you for streaming content Netflix). We finished Battlestar Galactica, Stargate-SG1 and are now working on Stargate-Atlantis. It’s so much fun to escape into the fantasy world sometimes!!!! And for the holidays, we each got a Kindle. We have loaded up the books. I still haven’t gotten around to reading much, but I’m going to work on it….
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