Raising a special needs child is full of ups and downs. When we first received the diagnosis, I could never have anticipated how different things would be from year to year. How one challenge can mean the whole world is closing in on you, and then one day you wake up and realize that overcoming one challenge can also give you your life back.
Right now we are experiencing an easy existence. Sometimes I forget to be thankful. There were a few years when I thought we couldn’t do it. It’s hard to say that unless you are surrounded by other parents who understand what you mean. It isn’t that you aren’t willing to do anything you can for your child, but in the back of your mind you really do wonder what will happen when you fail. But these thoughts come and go.
My husband is the stay at home parent, and at one point it was clear that he needed help- or at least an escape. Truthfully, there were many nights I didn’t want to come home. But I cared about him too much to be the selfish person I wanted to be. Raising a special needs child is hard, but it does not destroy marriages. I think it reveals the truth about what was already there. You will either become stronger or weaker based on what you started with, and we were lucky to have started with something great.
There is a disconnect that is possible when you are not the primary caregiver in the home. It has nothing to do with how much you love your child. I can’t begin to explain the guilt I felt as the working parent who sometimes daydreamed about working more. Just thinking about it once will feel like failure, but I now know better. I would arrive home knowing that until our daughter’s bedtime I would not be able to relax. My husband would be overwhelmed and looking for me to make it better. I was always watching the clock. We had our home set up in a way that she couldn’t get into certain rooms, and things were put out of her reach. It was me who insisted on that. I was always looking for new ways to keep her out of trouble with minimal effort.
And still, she found a way. She would run a constant loop that would include attempting to push over the TV, creating a water mess in the bathroom, jumping off something dangerously high….and going to the bathroom anywhere she could. An unstoppable, obsessive, constant loop. We couldn’t communicate. Her receptive language skills were only newly emerging, and it seemed as if we didn’t even exist to her. Plus, she was getting bigger and smarter. We could barely keep up.
Maybe I knew that my husband had already cleaned poop off of her, and her bedroom wall seven times that day. How many baths and loads of laundry had he done? And he was on the spot the moment it happened. Not me. Sure, I would give her a shower while he cleaned up the mess. About once a day. He was so used to the routine that he just went on autopilot and never asked for help. Meanwhile, I sometimes didn’t even know what I should do because it was already done.
This had become his life and there was no end in sight. Some of you have no idea what I am talking about, and some of you are feeling this way right now. I should have been smarter about it. I should have found some help for him during the day. But what would he do? We had moved away from our friends, and he was living in a city where he didn’t know anyone. I had a connection to the outside world. Coworkers and things I did during the day. All he had was me.
Just a little time and the right choices can make all the difference. It would appear to be very subtle to an outsider, but our whole life has changed. While our daughter still cannot have conversation or play with other children, she is so much more connected to us. Her understanding of language has grown to a place where we can give her direction and she follows it. She hasn’t had an accident since last May, and her bathroom water play is now mostly limited to washing her Barbie’s hair. I can live with that. She still jumps from high places, but she has at least become skilled at it.
She goes to school full-time during the day, and my husband spends a good amount of that time working on creative projects. We moved back to where our friends are, so we have a social life again. We even have a regular babysitter. I look forward to coming home at night and relaxing; our kid is silly and energetic- and fun to be around. Sometimes we lose track of time and accidentally let her stay up way past her bedtime. I still can’t believe that happens. I now know that she is very capable of learning all sorts of basic life skills. Eventually she will be able to wash her own hair and brush her teeth. Make simple meals. I feel like this will only get easier.
Of course, I am much quicker to get onboard with this new existence. My husband still gets stuck in the land of waiting for the other shoe to drop, or obsessing over small setbacks. I know it has become a part of his identity, and even if he wants to let it go- he isn’t quite ready to trust it. It makes sense to me, but often I have to remind him that a lot of her current behaviors are no different from any other seven-year old. Sometimes she attempts a cart-wheel and breaks something. That isn’t autism. She still gets stuck in loops and OCD rituals that can go on for hours, but they rarely result in any serious damage. She has learned what she can get away with.
I’m not naïve. There are days when I get glimpses of what could be. I know it could get harder. I know for many it only gets harder. We have plenty of challenges, but they just feel easier in comparison with where we were. I can do this now, and I didn’t really believe that before. This blog has often been a series of pep talks to myself. Sometimes I believed the words, and the rest of the time I simply believed that I would believe it again eventually. And see? I was right about that.
We are never guaranteed that anything good or bad will stick around for long. Life always has something new waiting just around the corner for all of us, until one day there is nothing at all. I plan on enjoying this tour of the easy life for as long as I can. For now, life is pretty darn good.