The (Other) R-Word I Dread as a Special Needs Parent

Regression.

That’s the R-word I dread hearing as a parent to a child with special needs.

I don’t use the word “dread” lightly. This word fills me with fear and apprehension. To hear this word spoken over any person, child or adult, can be heartbreaking. Yet parents of children with special needs, especially those of children with progressive conditions affecting cognitive development, hear it often.

Regression.

It signifies loss, going backwards, the lack of ability to do something the person was able to do before. It is real, and, at times, it is scary.

All children regress sometimes, they say. That is true. Stress, trauma, neglect, illness and change in family circumstances can all contribute to moments of regression. It’s common for a toddler, for example, to “forget” the skill of toilet training when a younger baby is born. Or for a young child to take a few first steps only to lose nerve and go back to crawling for a while. It’s widely understood that during illness or even long school holidays children can forget reading skills or physical skills they had long ago mastered. I get that. This is often temporary regression. And many children regain the previous skills when their health, education and/or daily life return to a stable place again.

But how do you live with the fear of regression permanently? What if every single skill your child could regress?

I have a video of my 6-year-old son putting numbered pieces into an inset puzzle. It was a huge achievement for him. Now a year later, and presented with the exact same puzzle, he struggles to use it. He is not guaranteed to master skills and then move on to new ones. His development is not that straightforward. He has potential. It is just inconsistent.

He once said, “Mummy.” Last week he was saying what sounded like “oh no.” Some days he can point to letters in a book if I ask him to. School sent a video home a few months ago of him ordering the months of the year with support. I have a video of him using a game on his iPad to put letters in the right place to make words. Today he cannot do these things. As fast as we gain one skill, we often lose another.

So what if this is your child too?

I can’t take away the pain of watching your child face challenges, but can I encourage you to treasure memories? Take photos, make videos, record moments and remind yourself your child overcame so much to master any skills they do have. 

There is always hope. 

In the right environment, at the right time, and often when you least expect it, you may once again see progression. Never stop believing in your child, whatever diagnosis they have.

Don’t allow the fear of regression to steal today’s joy.

My son has global developmental delay, autism, neurofibromatosis type 1, and learning difficulties. We hear the R-word often. According to professionals, this happens.

But there is one word I love. And that is progression. The P-word. So every day without fail I believe for that. I look for it and celebrate it.

Will you join me in looking for it with your child too?

Follow this journey on Faithmummy.