Years ago the hubbo came up to me and told me he wanted to go out on a date night. At the time I was exhausted and overwhelmed with trying to manage everything that comes with raising a child on the spectrum. I turned him down, but he was adamant. He arranged to have one of the tutors babysit and made dinner reservations.
The night came and we went out. As we sat there eating I shared with him everything I was learning about autism. We brainstormed how to help my son. He assured me we would get through this. After dinner, we decided to go to our local bookstore. Once we got there I said, “OK let’s go see if they have any new books on autism.”
And then he lost it.
“All we’ve talked about is autism. You’re in a bookstore, go find something you like, anything except autism” and he walked away.
I looked out at the rows of the books and didn’t know what to do. I couldn’t remember what I liked, or was interested in. I could feel tears welling up in my eyes so I quickly went into the bathroom and locked myself in a stall.
I sat there silently, tears rolling down my face until I was able to pull it together.
I remember walking up to the mirror and staring at my reflection. I was on a date with my husband and I was wearing no makeup, my clothes were faded and wrinkly, and I honestly couldn’t remember the last time I had a hair cut! What was happening to me?
I washed my face and walked back into the bookstore. I looked out across the store and saw the hubbo, standing next to a woman, in a red dress who looked like she was ready for a date. She flipped her hair back and smiled at him and I thought, “I’m gonna lose him.”
I could feel the tears coming so back to the bathroom I went. I don’t know how long I was in there the second time but it was a while.
Finally, when I felt calm enough I walked to the hubbo. The woman was still there, he introduced me, I grabbed his hand, and she sauntered off.
I looked at him, tearing up again and said, “will you help me because I don’t know what I like anymore.”
He took my hand and started talking about books, music, and stuff. I really can’t remember exactly what he talked about. What was important was the feeling that he was trying to reach me. He was trying to pull me out of the fog I found myself in.
I got there because I approached working with my son like a sprint. I knew if I just held on, gave it everything I had, fought for every service, read every book, and made sure we had the absolutely best program (evidence-based of course) we could fix this.
This mentality started to destroy my marriage, my mental health, and my family. During that time my typically developing daughter was completely lost in the whirlwind.
I became so fixated on “fixing” my son that I was losing the joy of being his mother. He was and is an incredible artist, he is kind, funny, interesting, and as loyal as they come. He is an incredible person and I feel so blessed that he is my son.
After twenty years I can tell you there is no quick cure and no quick fix. The truth is autism wasn’t destroying my family I was. Once you allow yourself to get completely worn down it hurts everyone around you and takes some time to get healthy again.
Take Care of Your Mental Health
It is so important to manage your mental health. It's important to find a new normal, with boundaries so that everyone can get some rest and support. Here are a few things that have helped me. Please note I am still learning and I have a long way to go…
Take time to laugh and laugh at everything. A life outside of the norm brings with it misadventure and lots of fun stories. Enjoy them, they are yours. If we get a chance to meet ask me about maple syrup.
Say no and say it often. I once had a therapist tell me, if you can just do this one thing… I told her no. No is a sentence! Therapists get to go home, sleep through the night, and have the weekends off. Therapists are wonderful people but if I as a parent am not doing everything you wish I could please understand that you are not the only therapist I am working with.
Cut yourself some slack. I have learned to say I am doing the best I can with what I have. I am not rich, I am not all-knowing, I am just one person. I need to take care of myself or I will hurt my family.
Whatever you do let go of guilt!! I can’t emphasize this enough. As soon as you hear yourself saying the word should - stop. For example, I should schedule that appointment this week, I should just cancel meeting my friend for coffee. Should is my warning word that I am going to make a decision I really don’t want to make or add stress to my life.
Why my child has autism is not important. A 2007 study conducted at the University of North Carolina suggests that "Mothers of children with autism may be prone to depression if they feel responsible for the cause or outcome of their child's disorder...". Also in that study they found that 50% of mothers with children with autism had elevated depression scores, compared to 15% to 21% in the other groups.
If you associate taking care of yourself with compromising your care for your child you will lose. You will not make it through the marathon. You will hurt the people you are trying to help. For family members or therapists reading this please keep this study. Please take a moment to let the results of this study sink in. If you are reading this and you are trying to guilt someone into doing something, make them see the “reality” of the situation, or give them a loving push- instead of being helpful you could be counter productive. Piling on guilt is often destructive to mental health.
Ask for help. Ask for lots of help. I kept cash on hand and asked my neighbors if you are going to the store could you check to see if I needed anything. I asked for rides both ways for my daughter so she could do things. I asked the copy shop for their misprints because my son was drawing close to 50 pictures a day (copy shops use to be a thing). I asked therapists to tell me how to fit their goals into my schedule.
Protect your marriage.
I can’t tell you how many people I have watched tune out when I talk about this. I have heard many stories of people who thought their marriage was strong who end up divorced and don’t know how it happened. Carve out time for you and your spouse. It's not easy but somehow you’ve got to take time to connect with your spouse. If babysitting is hard plan a date night in. Get some good take out, watch a movie together. Or meet for a lunch date while the kids are in school.
Give each other breaks. It's important to give each other time to recharge and if possible get out of the house. At one point this looked like me reading the Sunday paper (this used to be a thing) while eating a maple bar at the donut shop. This was a one hour once a week break and it really helped my mental health.
Be open when your spouse shows concern for your mental health. It’s easy for me to get defensive when my spouse starts to notice things are a little off with me. Why do I do that? I don’t know - but it's dumb because he loves me! Who better to see when I’m getting overwhelmed and may need to rework my schedule or let go of something.
Last but not least celebrate the small stuff and keep on celebrating. Don’t just celebrate IEP goals but everything. When my kids were young and we had leftover birthday cake we would bring it out and keep lighting the candles and sing the happy birthday song until the cake was gone. Why not? I still had candles and extra birthday plates. It was fun and it made the cake taste better.