Some days, I’m tired. Like super, can’t think about moving off the chair, don’t care about anything tired. It’s not just a “take a nap and feel better” tired. It’s a tired of worrying, thinking, planning, handling things tired and no amount of sleep will help that. And I know every one of you knows exactly what I mean about autism tiredness.
And I’m one of the lucky ones. For many, many years, Rob couldn’t sleep through the night. While he just played in his room (after sneaking a snack some nights) I heard him and often laid in my room listening for him to go back to sleep. Most nights, he would open my bedroom door, then Casey’s – and he never shut them quietly. I think he was checking on us.
Finally, he has either matured enough to sleep or we’ve found the perfect bedtime routine and meds to help him sleep. Though there are nights when it’s late before he sleeps, most nights, he is asleep by 10:30 or so and sleeps till I have to wake him up the next morning. Casey has an occasional night that it is hard for her to go to sleep, but those are finally rare, too.
So even though I get to sleep each night, I’m still tired. I’m tired right now. I spent three hours today taking an online continuing education course for the kids’ guardianship in addition to everything else that needs done on the weekend. I’m ready to watch TV and relax. And Rob is “Singing.”
By singing, I mean he is repeating the same sounds over and over in a loud voice and as been for the last hour. There isn’t a room in the house that he can’t be heard in. His iPad is on his lap – he has a pile of magazines and still he sings. Every time I go in to ask him to use a quieter voice, he says “GET THE VAN!” in the same loud voice.
Yep, he is still saying that. It’s the first thing he says to me every morning. And every time he sees me. When he comes home from the workshop or gets out of the shower. Every time he is in the car with me, I hear it over and over. Last week, we drove to a park less than 5 minutes from our house and he said it almost 50 times. I’m tired of it. I wish he could at least use a quieter voice.
My kids are the most important people in my life. I feel so bad that I get tired of autism. I’m tired of packing the same things in their lunches. I’m tired of helping them shower every night. I’m tired of wondering how people treat them when I’m not around. I’m tired of wondering what the future will be like for them. I’m tired of second guessing myself for the decisions I make.
I’m tired of his picky eating and her eating everything she can get her hands on. I’m tired of having to adapt every plan we make. I’m tired of financial worries for them. I’m tired of people telling me to take a nap and feel better. I know they mean well, but while sleep does help a little, I’m still tired.
I’m tired of hiding that I’m tired. I am supposed to be strong and capable, not tired. People tell me that all the time – how they could never do what I do. I don’t believe that. I think we all can do what we need to do. It’s just exhausting.
I know everyone of you reading this has days like this. It’s hard to be “on call” at all times – even when you are away from your child, you are still thinking and planning and wondering. A break from a special needs child is wonderful, but it is rarely truly a “break.” You are still worrying about them.
What I’m most tired of, though, is feeling guilty about being tired of autism. Autism has brought a lot of good into my life. I’ve learned so much – about disabilities, about friendships, about who I am. Autism has given me many opportunities that I would have never had. I’ve learned patience, tolerance, acceptance. I’ve learned to defend myself and my kids. But, I still feel guilty for being tired of it at times.
I worry that people will think I mean I’m tired of my kids or that I’m not proud of them. That is never my tiredness. I am so proud of all they have accomplished and can’t wait to see what else they do with their lives. I’m never tired of being with them – I just get tired of autism’s “quirks” sometimes.
When you get that tired, please take a break. Find someone you can trust to stay with your child – even if you are just going in the other room and take a long, hot bath. Try to stop thinking about the future and all of the “what-if’s” that we can’t possibly know. Believe me, I know how hard that is to do!
Think about all of the amazing things your child has learned to do – and remember that you worked just as hard as your child. Every little accomplishment should be celebrated! Shout it from the rooftop when your child tastes a new food or wears a new shirt. You both deserve the applause. Remember – those accomplishments are why you are tired!
Be tired of autism at times – that’s ok. Try not to feel guilty about being tired of it. (yes, Mom – I am still working on that part!) Know that you are not alone and you are doing an amazing job raising your children. Tell everyone when your child reaches a new goal. Jump, clap, shout for joy! Those will be the times that will help you the most when you are exhausted!