by Laura Rena
I am a parent with a disability. My disability is a severe traumatic brain injury, and it was caused by the event of a head-on car accident. I had to have a craniectomy, which is a surgery where a chunk of skull is removed to help reduce brain swelling, and is later replaced when the swelling dissipates.
This injury has caused me to have a permanent disability in regards to several things, but my memory is one of the main things that was affected. I had one child that was two when the car accident happened, and had two more in the years following. So I am a disabled mom with three kids (18, 12, and 8 years old).
One of the hardest things that my kids (and I) have had to deal with is the fact that I’m not as able to help with schoolwork as I’d like to be. Instead of knowing things at the snap of a finger, I now often have to either read up on it or watch a YouTube video on how to do it correctly.
Another thing that my family (my husband, my children, and I) have had to deal with are child protective services (CPS) phone calls, because of the impact that the disability has on my speech at times. I’ve had the nurse at my children’s school call to speak to me about things regarding my children, and I was completely lost as to what they were trying to say to me. I tried my hardest to grasp what she was trying to tell me, but I know I sounded clueless about the situation. There was also one instance where I’d woken from a nap because they were calling, and I had the “OMG my brain needs to wake up” feeling. I had to call (I didn’t have any transportation at home) three or four different people to pick up one of my children for being sick, and it took a little longer than they’d have liked, so the nurse asserted it was neglect (knowing I didn’t have a license and had to call to find someone to come and get my child). Because of my speech problems and occasional failure to grasp information quickly, along with other nonsensical reasons, the nurse decided it was necessary to call CPS.
That’s one thing my children have had to deal with regarding my disability—fictitious calls to CPS because of my speech and memory problems. I truly feel that this isn’t something to just look past, and I have to wonder if this happens to any other children that have disabled parents also.
There have been times, as I’ve been going through their binders at home, taking out things in the “keep at home” section, and looking through them before tossing them, and then not realizing that somehow some of their homework has been placed in that section, so it gets thrown away. Then when homework time comes, they don’t have it because it’s in the trash. This is why I’m grateful most of their learning is done with Chromebooks now.
They’ve also had to deal with my emotional difficulties stemming from the brain injury, and I don’t wish that on anyone. I think about that, and I get really upset with myself sometimes over it. I’ll sometimes get irrationally upset, depressed, or irritable/angry, and my whole family deals with the challenges that I go through with emotional regulation that I’ve had since the injury.
I feel super guilty about the fact that I struggle at times with emotional regulation, and that my kids are the ones that see that. It’s really hard to try to teach your children how to be competent with emotional regulation and how to deal with emotions when I can’t even always deal with them myself. I truly hope I’m not causing my kids to grow up with a disadvantage regarding emotions. I’m super thankful to my husband in this regard, because when things happen in this aspect, he’s there to explain to them that sometimes things don’t work in my head the way they do in most people’s heads because of “what happened to mom’s head.”
I’d imagine that living with me gets truly difficult at times for everyone in my family. Along with the things I’ve mentioned already, I also now deal with adult ADHD. Even with the medications, it’s hard to not have times where I’ll start doing one thing, and before I know it I’m moving onto other things, and with the memory issues that I have, I’ll completely forget about the first thing that I’d started off doing. At times, I won’t even remember that I was doing something else at first until I see the remnants of the unfinished task. (Or don’t see. For example, we’ll say I forgot to take the meat for dinner out of the freezer because I got distracted by cleaning up something or some other task.)
Overall, my husband is my rock. He’s been there for me for most of my life (20 years) for literally everything that I’ve gone through. I’m lucky enough to have somehow managed to find my soulmate at 15 years old. We were married before I turned 19, and it was most likely the best decision I’ve made in my life.
Let me sum up just a few (super shortened versions) of the absolutely crazy things that we’ve been through together. Together, we went through the loss of my pregnancy with our first son when I was nineteen weeks and five days pregnant. That was its own personal hell. There’s a lot to that situation, but we’ll leave it as I almost lost my life. Then, six months after that, we were in the aforementioned car accident, and I almost lost my life then also. Again. He was by my side through it all, and I love him more than I’d ever thought it was possible to love someone. Together, we have an amazing life, despite my disability and the traumas that we’ve faced. Yeah, life has been hard, and I face some challenges regularly regarding memory and parenting that most people don’t—my life has been more rewarding in so many aspects that I see the average person not having. Yes, I’m a disabled parent, and it makes things a bit harder sometimes. In the end, it’s all worth any effort it takes.