My Daughter is Watching Me Parent a Special Needs Child by Joanna Kent

My daughter is watching me parent a special needs child, even when I don’t think she is. She sees me with her brother. She sees me cooking and cleaning. She sees me all the times I say I can’t play right now. But mostly, she sees my disappointments even when I think I’m doing my best to hide them.

The other morning was one of those moments. First, I got the call canceling the appointment for my son that I desperately needed. Then I got the second call that they wouldn’t be able to help us at all. This isn’t something new or different. My son’s needs are complex, and I can appreciate it when I don’t have to waste my time, but it still is hard to hear you don’t have access to someone who could help your child or at least no one who is in-network with your insurance. I hung up the phone and went back to what I was doing, and my daughter saw me. She said, “I can finish this work later,” and I insisted she continue so that we could take a break after.

But the reality is, there are no breaks. If I do take the time and don’t keep pushing, then it’s just more delays. If I do enjoy a break, I am filled with regrets later because it wasn’t a break, it was me possibly sabotaging what could have been. That is a tremendous amount of burden for me to carry daily. That enjoying life and ignoring the never-ending list of to-dos means that my son can miss out on an opportunity.

I am always cautious never to tell my daughter I am disappointed in her. My parents drilled into me that disappointment was the worst thing, so I never want my daughter to comprehend that feeling that still haunts me as an adult. It’s like the word hate. So strong, that emotion behind that word. If she does say it, we always talk it through. My daughter sees that I carry the pain of disappointment, but she doesn’t know what it is or what it means on this level and hope she never does. Regardless she loves me enough to see I’m suffering even when I try to hide it with a smile and keep pushing through.

Like so many other special needs parents, I have the burden of too much on my plate, all of the time. I will never catch up. My son will never have all the things he needs. I will always need to fight, and my daughter is watching this.

When I lose my cool because I pushed myself too far that I can’t even handle the rage that lies within me from all the disappointment, rejection, abuse that I take, my daughter is watching me, learning from me – a whole other level of pressure.

The failure is mounting daily.

My daughter is watching me when I’m strong, and I smile through it. When I do a workout or make the healthier choice to eat a meal instead of drink a smoothie. She sees me taking care of my family; but not my own body. She loves me when I’m sad, angry, or hurt. She wants to be like me, and because of that, I want to be better.

Being a mother has taught me so many hard lessons. The first was, I will make mistakes, and when I do, I admit to them right away. I tell my daughter the truth. I don’t make excuses, but at times I share with her my frustrations, confusion, and what led me to cry or need to excuse myself. When I yell, I tell her why I was wrong and how I want to get better. I honestly think I am.

I was ill-prepared to be a parent. I am not equipped to be a mother to a child with such high needs in the age of COVID where help is so limited, and demands are so high. The failure is mounting daily.

But my daughter is watching how I deal with this. So I don’t take a nap even though I’m exhausted and barely slept for the last few weeks. My daughter sees how I speak to other people, so I smile, say my thank yous, and keep kindness first. She repeats the phrases I use, so I try not to utter the self-deprecating things such as, “I’m fat,” or, “I’m weak,” or “I’m always wrong,” and, “I’m done,” all the things that bubble in my mind when I feel the worst.

I want to give her the ability to be anything she wants. I know that pressure will be a lot for her someday. Knowing that she has a brother with such high needs means future pressure for her, which I will never know. So for today, as everything hits the fan and my life seems to be a mess, circle time leads to hair pulling, and lunch leads to throwing up, I remember my daughter is watching me as I clean up the messes. She is watching me to see how I react. She is learning from me, even when I don’t want to be a teacher.

Share this:
Joanna Kent
Joanna is mom to a "typical" 7-year-old and a special needs 4-year-old son with a rare genetic disorder. She is a full-time mom, caregiver, and content creator for OHS. She wants to share experiences hoping that others can benefit from what she has learned along the way.

Leave a Reply

Your email address will not be published. Required fields are marked *