The title says it all…we are the very product of the lives we have lived and are living with our special needs children….for example:
Instead of rejoicing at milestones naturally achieved, we watched our children struggle to make these goals and sometimes not achieve them at all.
While other families attended football games or birthday parties, we would dissect into the smallest bits, just exactly how that game or party could play out, so we could decide if our special needs child could handle it.
Instead of waking up and pondering what we need to do that day, and enjoying the morning with our children. We would get up, praying our child would feel calm that day, their systems would allow them to go with us with no meltdowns.
My second daughter has two disorders that make our life full of the above mentioned scenarios, when she was younger each and everyday was filled with these situations and more. As such I became a different person than I was when I was the mom to our first child, a typically developing girl.
I can only speak from my experiences, but having encountered so many other parents whose children have so many other disorders, I think the core feelings might be the same.
The one memory that really was the moment I truly realized I was a special needs mother was when Elizabeth was two years old. She was in her height of fear and anxiety. Going anywhere with her was a huge challenge. The tears, arching back, meltdown…..We had not begun our search for a diagnosis yet.
We were at the park, enjoying the day, Elizabeth was usually okay here for a bit while swinging (makes sense right?) Emily was playing and having fun when my friend and her two children happened to show up. Out of the car comes my friend, her two children run out to my two and want to play… the sudden change in energy, talking, laughing made Elizabeth nervous…she begins to show signs of a meltdown. Emily wants to run and play with them but the park is big and I know that I need to go with her, but Elizabeth is looking pretty tough now. My friend is saying ” Just take her out of the swing, and she’ll be fine” Emily wants to play….Elizabeth wants to go….My friend could not possibly truly understand……I am ALONE with this….. that was the moment….I will remember Emily’s face and her wish to play, and the fact that I tried for her but could not make it work….forever.
I know that for Emily it was just a day in the park, for Elizabeth it was another anxiety filled moment. Butfor me, I took home some things to think about: Granted it was another good year before we really knew what Elizabeth had or how to begin to treat her and as such what could we really have said that day. But special need moms need some special things and we need to do some special things to help ourselves as well.
Here are some of the special things we can do:
Try to be honest- in other words simply saying ” We can’t come to your child’s birthday party” can be replaced with. ” We are sorry we can’t come to your child’s birthday party because our child has SPD” then explain what that is and how it affects your child.
Try to be honest about how you feel: I can remember smiling through it all, the fear, the pain of watching Elizabeth be so afraid. I guess I thought showing my smile would tell the world I was strong, but in reality. I needed to be honest. I needed to tell those around me and those working with Elizabeth how I was feeling. How watching the therapy made me feel. Then those close to me could understand.
Tell others what to expect from your child; I used to go somewhere and pray Elizabeth would hold it together until we left, but I should have told others what could happen and to ask for help with Emily if the meltdown did occur.
For those wondering how to help a special needs mom, here are some thoughts I have:
Try to simply be there for them, invite them to places but try to understand when they cannot come.
Ask the questions you are the thinking, in other words, let us help educate you on our child and their disorders,.
Try to explain our child to your child, that kindness and understanding from your child could make all the difference in the world to our child.
Know that if we could, we would be all the places we needed to be, and do all the things we needed to do. But simply, we can’t
Call us and see how we are doing, knowing you care, is a gift. Plain and simple.
Thank you for taking the time to read this, I hope my thoughts and words will help you think of ways to support those special needs moms on their journeys…speaking as one of them…we will always be grateful.