I am the mom of an eight-year-old child with special needs. He has challenging behaviors and severe ADD, as well as speech delays, educational delays and a myriad of other issues. It is hard to categorize him, so I usually describe him as “just not like other kids.” If most children are on an upward trajectory, mine is all about ups and downs and curves. But he also has the greatest capacity for love and the biggest smile of any child I know.
When speaking of my son’s moods, I have often said, “You just never know which way the wind is blowing.” Since it is difficult to understand how he processes things, it has always been hard to predict how he might react to different situations. In short, every day is a crap shoot.
But not lately. I am not sure why there has been a change, but I looked at my husband one night and commented, “Things are simply easier lately.” We pondered for a minute what the cause might be. Was it camp? Is it the new school? Is it simply that he is getting older and understanding more? Are his communication skills improving so that people understand him better? Or is the change actually in us? Are we calmer? Do we have a better handle on how to deal with the situation? Is the fact that we have fully accepted who he is, and what our life is, the reason for this new calm that we feel? Or is it a combination of all of these things?
A few months ago, I woke up one morning and realized that my life was difficult. I know this sounds ridiculous considering that everyone else on earth already knows that life is tough, but it seems I was a little late to the game. I simply thought (and often verbalized) that everyone has to play the cards they are dealt, and these are my cards. I had believed that there are no choices — as a parent you do what you have to, and that is it. I downplayed my situation. It wasn’t that I didn’t have meltdowns or find it hard when issues came up or when we had a rough day. It was more that I looked at the total package and spoke about my life as if it just was. Then one day, I vocalized that my life was hard — as if it was some great epiphany! That was a turning point for me. It was in that moment of fully accepting that it was hard, and that it was okay to say so, that I began to feel more comfortable in my own skin as a mother of a child with special needs. In the recognition that it was okay to admit it, I let out a major sigh of relief and acceptance.
Though I am no expert, I have this to say to parents who are in this journey: don’t think that just because you are the parent of a child with special needs, being a good parent to your child is a given. We often think that we are just doing what we have to do and playing the cards we are dealt. But in thinking this way, you are selling yourself short. Faced with our challenges, many people would simply pull the covers over their heads and not get out of bed. They might not respond to their child’s needs with full acceptance. They might not be their child’s best advocate. So pat yourself on the back and admit that your life is difficult. Fully accept your child and your situation, and in that moment, you too may begin to feel the season of change.
Miriam Mark is the Director of Community Development at Farmigo, a company working to change the food system and bring healthy, fresh, locally grown food to homes across the US. She is also mom to three children ages 8,6 and 3. She chronicles her experience as a mom of a special needs child in her blog.