Autism and Caregivers – The Need for Self-Care

I’ve said many times that caregivers need to take care of themselves as much as they take care of their loved ones with autism. It’s hard to do – hard to think about yourself when so much of your time is revolving around their care. But, as someone who has crashed more than once (and hates to admit it!), you have got to think about yourself. Autism is hard on everyone in the family. It also can bring endless joy.

My mom will be very proud that I’m admitting this, as again, I’ve told you I hate asking for help. I’m supposed to be strong. Everyone tells me that I am. I can’t let anyone down and I have to handle all that life throws at me by myself. It sounds good, doesn’t it? And many days, I still feel this way. But, those crashes always remind me that I am NOT always strong and everyone needs help at times. It was a hard lesson to learn, but I’m getting there. 🙂

Autism can be hard some days. It can be physically, mentally, emotionally and financially exhausting. While my life is no longer a circle of doctor appointments, therapies and phone calls (times two!), I remember those days clearly. Add to that a lack of sleep for most families (for us – three years, then a break, then almost 10 years of either no or broken sleep), the every day stresses and often, financial issues (many families need two incomes, but with a child with autism, it isn’t always possible to find help – or to afford special care. Sometimes, it’s easier for a parent to stay home. And don’t forget the costs of therapies, doctors and medicines that insurance is only in the last few years been possibly willing to pay!).

Which brings me to my point. You will crash. You are strong. You are independent. You are everything to your child. And you will crash. You have got to find ways to take care of you. Sometimes, you have to be really creative – and let go of the preconceived notions that other people put on us!

Think back to before you had kids. What did you like to do? Exercise? Read? Craft? Fish? Play sports? Sleep? 🙂 Now you just need to find a way to do some of those things again. You need to eat right, even when you serve chicken nuggets or frozen pizza rolls for many meals. Just because your child is eating nuggets, doesn’t mean you can’t have something else. At least nuggets are easy to make!

This best way to take care of you would be to find something you and your child can enjoy together. Casey and Rob love to go hiking. When it’s a decent day (we don’t let cold stop us from walking at the park but the bitter cold and crazy weather has prevented us from going for a few weeks.), we go to the park and walk a few miles. The fresh air feels so good and it’s amazing to be doing something together! During the summer, we’ll explore state parks with Tracie. Besides being fun – it’s an inexpensive way to spend the day!

How about crafting with your kids? Or just coloring a picture? Casey and I both like to color, while Rob would rather line up the crayons and wait till he can scoop them up and run to his room with them. Would your children like to make cookies? Obviously, I don’t know your children – I’m just throwing out ideas of things you may be able to try, even with their possibly short attention spans.

If you like to play sports, have you tried teaching your child? It may not last long, but imagine how good it would feel to actually toss a football with your child. (That’s on my list for Rob this summer – just to try it. He used to love baseball, so I’m going to try and find a bat and ball and try that again.) How about shooting hoops? Swimming? (though if your child has no fears, that may be something you want to avoid.)

You need to recharge your batteries as a person, too – not just as their mom or dad. Here’s where you may have to get really creative and forget what you think you should be doing and do something fun! When your child is occupied with a movie or their iPad, read a book. Do a craft. Exercise. Watch a movie you love. Take a long bath. Build a model. Do some woodworking. Whatever you love – do it. Leave the dishes – you can wash those while your child is hanging on your legs.

Leave the dust. It’s just going to be back in a few days. Leave the laundry in baskets – you can fold that while you watch them. Yes, I know it’s easier without their “help,” but you need some time for you! Besides, if you fold laundry with them, they can help. It may not be folded exactly as you want, but it will be done, and your child will be so proud that they helped you. Rob used to draw pictures in the dust and then I gave him a Pledge wipe and he “erased” his pictures. Same thing with steamy windows – he would draw, then he would clean. Casey helps with laundry.

I know that time together is important to spouses, but if you can’t manage that often, take times getting away from the house with your friends. Take advantage if someone offers to watch your child. I know how hard it is – I really do, but you have to do it for you and for them. Invite friends to your home. Again, I know it’s hard to open your home to people or may not understand a naked child might come flying through the room, but you won’t know until you try. And truly, if someone is offended by your child, do you really want to be friends with them?

Let your child have the iPad or watch TV. Yes, too much screen time is frowned upon, but if it means ten minutes for you, who cares? You need to do what is best for you and your family – not follow the rules that “experts” make up. Take advantage of those minutes and relax. Watch crazy videos on Facebook and have some laughs. Have a snack without someone begging for a bite. Rest.

As for me, I do strength training and yoga several days a week. I walk as often as I can. I crochet and read. I stay up later than I should so I can have an hour alone. I eat junk food and enjoy every bite of it. I try to ask for help when I need it. I know this may sound impossible to you, but remember, my kids are older and are able (finally) to entertain themselves for a while. Plus, I’m always listening – when it gets too quiet, I run to see what is going on. 🙂

The point of this is to understand that it is really okay for you to think about you at times. I know it sounds selfish (and honestly, I still feel like that at times – I have to fight those thoughts!). Just keep telling yourself that if you can’t take care of yourself, you won’t be able to take care of your child…. and then what? You are in trouble.

It’s not easy to think of yourself first. It’s hard to put all the chores around the house on hold when you have a few minutes. It’s hard to get away and not think about your child. But you have to do all of these. You have to stay healthy – physically, mentally and emotionally to give your child the best care possible. That starts with you taking care of you, no matter how selfish that makes you feel.