When Your Child’s Disability Consumes You
A reader asked me yesterday…’My son has autism and I’m not depressed. I know that. But I feel like his disability is consuming me. Help me please. Why is this happening? I don’t even recognize myself anymore.’
I reread her message over and over again. I related to her with every fiber of my being. At 34 I have been on the Autism journey for almost five years now. I work. I have two kids. I have friends and family. I have a full, busy life as most would say. And yet, I struggle every day with self identity. I often say…I have become my son’s disability. And it’s the truth. I can’t really tell where autism stops and I begin. We are one in the same I guess.
Being Consumed
For me it started out small. When my son was diagnosed I jumped into advocating for him at full strength. Each day it seemed like his care needed a little bit more of me. And eventually, I stopped caring for myself. I wasn’t eating healthy. I wasn’t sleeping. I was too exhausted to exercise. I was drinking way too much caffeine and a few too many glasses of wine. I noticed I was only showering once a week because Cooper couldn’t be left alone for even a second. I struggled to concentrate at my job. I found myself calling insurance companies and the county from my desk more than I was actually working. My to-do list for Cooper took precedence over everything else. Then I had to cut back my hours at work to take Cooper to his therapies. I started losing friends. I was too tired to see them. And if I brought Cooper it would end in a disaster every time. When I did get a second of free time I opted for quiet over calling anybody. And at the end of the day I would look at my phone and see all the text messages and just cry. I didn’t even have the energy to respond.
Before I knew it my life seemed so foreign from everyone around me. I was living Medicaid, gluten free, severe constipation and ABA. And I withdrew even more. I lived and breathed Autism. I was my son’s disability. And before I knew it his disability had consumed me.
Now, I am almost seven years in. I’m trying every day to find some sort of balance. It’s a struggle though. And the biggest contributor I think is the isolation. That’s what tears a person up. You start to feel disconnected from the world. And furthermore, you live in a bizarre world. For example, I live in a world where the door are always locked. Our toothbrushes are hidden. My lamps don’t have light bulbs. I have 3-4 therapists in my home a day. I could go on and on. This is my normal.
My Answer
Here is my answer to the beautiful person who asked me for help. I think our children’s disabilities consume us as parents. We are human. And we are damn good parents. But, eventually, we have to dig out. We have to figure out who we are…and we have to do it in our own way…and on our own time.
When your child’s disability consumes you…
Having a child with a disability changes every aspect of your life. When my son was diagnosed I jumped into advocating for him at full strength. And before I knew it his disability had consumed me.
For me it started out small. I stopped caring for myself. I wasn’t eating healthy. I wasn’t sleeping. I struggled to concentrate at my job. Then I had to cut back my hours at work to take Cooper to his therapies. I started losing friends. I was too tired to see them. And if I brought Cooper it would end in a disaster every time. Before I knew it my life seemed so foreign from everyone around me. I was living Medicaid, gluten free, severe constipation and ABA. And I withdrew even more. I lived and breathed Autism. I was my son’s disability.
A reader asked me yesterday…’My son has autism and I’m not depressed. I know that. But I feel like his disability is consuming me. Help me please. Why is this happening? I don’t even recognize myself anymore.’
Here is my answer.
#autism
Posted by Finding Cooper’s Voice on Sunday, July 23, 2017
I soooo relate to this. We have 3 littles and the youngest has a significant disability. She’s 4 and her behaviors have intensified quite a bit in the last year or so and she has no safety awareness, so leaving her alone to play while I shower isn’t an option. We are juggling 4 therapies, 18 doctors, chronic constipation, she sleeps about 4.5 hours a night and currently, Medicaid changes in our state are requiring a ton of research to make sure her stuff is covered. We moved to a new city right after she was born and my world since then has been all about her genetic disorder and getting the rest of our family through each day. It’s like constantly living in crisis mode. Who I am and all the ideas and plans I had for once my kiddos were all in school are out the window; I’m not sure I’ll ever be able to have a job again, let alone go back to school. I’m frankly too tired at this point to even contemplate how that would happen. Hearing that balance comes, even in the form of more frequent showers, gives me hope. I can’t see quite how it will work, but the mamas who have been doing this longer carry a wisdom and a peace that I haven’t found yet and I trust you all. I want to get there.
It’s easy to allow yourself to become consumed with it. My son is 5 and when he was (finally) diagnosed with autism I became a researching crazed maniac mom. We didn’t sleep for about a year. We are in Mississippi so ABA was seriously hard to find-as in, we waited for over a year. I have two other children-girls-16 & 9. I have to be their mom too. We have no family help. It’s tough. We pay $$$ for babysitting-Thank God I found 2 people I can trust. I’d be nuts without them. Anyway, I’m not sure who I am outside of motherhood. Outside of being an autism mom or a teenager’s mom or a tween’s mom. Dang. Now that I think about it…it’s pretty overwhelming. But you are right…gotta dig yourself out.
Hi. I saw your video on Facebook this morning. I sat here and cried, while drinking my coffee. I soooooooo relate to you. My son is 4. I just had his preschool teacher tell me she thinks he is slightly autistic. WHAT? What does that mean? I have no idea and don’t know what I should do about it, as I just thought it was typical for him to act like that. After reading your website stories, the one that stuck was you saying you have become your childs disability. I couldnt agree more. I have lost myself as well, being a full time stay at home mom AND try to run my business from home. I get the kicking, pinching, hitting, just pure anger from my son. When he gets mad, he tells me he is going to break me, or break whatever is near him. 4 years old! Can you imagine him getting older and being like that. He will sometimes grab my face and shake his whole body , looking at me with this evil. I feel I cant go anywhere with him as he makes huge scenes. He is still in diapers as he refuses to go #2 in the toilet. He is incredibly smart tho. He can read books which amazes me!!! Not even sure how to test him, where to go for it. I too am exhausted by the end of the day…feel my drinks relax me and i get to sit down for at least an hour, then off to sleep I go. The next day will be here soon enough. Thank you for making this page and will continue to watch ♥