The Advice I Needed to Hear as a Parent of a Child With Disabilities

As a mom to a child who has disabilities, being open or receptive to some messages is not always easy for me. My daughter is 19 years old now and has made amazing, wonderful gains in life. We are so proud of her. She was diagnosed at 2 1/2 years old with sensory processing disorder (SPD) and dyspraxia. Both disorders affect her life each and every day.

SPD is when there is difficulty with how the nervous system takes in sensory information and turns it into the appropriate motor response. This means things like wearing shoes, taking a bath or eating certain foods can be painful. SPD can take many forms. For Elizabeth, many sensations felt wrong or offensive, and she cried because her system could not process the sensory information that was around her. This was every day for the first two years of her life.

 

Dyspraxia makes learning new skills or tasks difficult for Elizabeth, as it is a motor planning disorder. Steps need to be broken down and repeated over and over until the skill is mastered. Dyspraxia has hidden effects as well. These can include difficulty with short-term memory, the ability to organize the steps necessary to complete a task, or the ability to initiate the steps even when they are already known. It also affected her speech, as she did not talk until the age of 5.

When we got the diagnoses, we started therapy right away. Therapy and hard work brought success. It was slow. It was hard. And truth be told, I wanted to do anything and everything the therapist asked us to do so we could help her and improve her life. And I wanted it now. I was willing to put my chin to my chest, hold tight to the “to-do” list from all our therapists, and work.

It did not matter how many other things I was doing at the same time; I was determined that the work get done. I was focused on getting to the goal of “fixing” this young Elizabeth who was now 3 years old.

Until I got my message — the one I could not ignore.

“Love her, Michele. Simply love her. And enjoy her. Time will pass and you will know that through it all, you did this.”

The message came from a dear friend. Actually, she was a former colleague of mine, someone who knew me before I had children of my own. Who knew how I used to be and wondered where that person had gone.

I remember just where we were at the time, and I remember that her words stopped me in my tracks. It was the first message that made it in. I had heard others offer words of support and advice. But when one is focused on a goal, those words simply do not get heard.

But this one did. I think I turned around to look at Elizabeth, to really look at her and see that child. A beautiful child, with these huge blue eyes. Who laughed…now, who hugged me. Who had bright eyes that let me know she was happy. Who was trying to learn to talk. I let it in, and it changed everything.

It made me aware that no matter how much work needs done, I need to be in the moment.

It made me realize that time passes quickly and moments need to be treasured along the way. This is ironic, as I was and am the kind of person who hated the end of all vacations because I was going to miss my family. I hate the end of summer for the same reason. I wrote the date I found certain seashells so I could hold onto the memory. But somewhere and somehow on this journey, I lost this part of myself. It was like I thought I could get back to this mindset after our work was done.

I thank my friend for the message that changed it all.

It has stayed with me now for over 15 years, and I can say I listened to her.

I can say that I never went back to the mindset I once had.

I can say that as I look at Elizabeth, now graduating from high school, I have no regrets.

I loved her through it all.

I love her for who she is.

And I enjoyed every moment with her.

Thank you, my friend, for the message that got in.

Editor’s note: This story has been published with permission from the author’s daughter.

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