So many times I am asked, "Is it hard being a mom to a child with Autism?", "How do you do it?" and a big one I hear is "Better you than me. I couldn't."
To be honest, there have been moments where I have thought, why Mark, not why me. If I could change anything, it would not be the gift of parenting this angel who sees life with no fault. It would be to take the struggles away from him, to take the looks away that he receives from others in a not so good moment and to take away the blatant ignorance of so many adults who really should know better! And, note, these ignorant fools come in all shapes, sizes and socio-economic backgrounds. They don't discriminate!
I have learned patience to a new level. I am more aware and more sensitive. These are qualities I am very proud of. I also know I possess these in larger amounts because of what I need to do every day BUT, that does NOT mean I don't get angry, I don't get sad, and you know what, there are times I think about tripping people that have such stupid things to say!
Here are some of the things you should know about most special needs parents:
We are the ones you want on your team. We get things done, we do not give up and we work harder than the average person!
We will fight, and we know how to fight. I do not mean physically, although I think I could. Our words are strong and effective. We battle with schools, doctors, the state and government, whoever and whatever we need to. Like a bull, we don't quit! We don't back down.
We are NOT without stress. We have all the same things to get done in a day: laundry, dishes, shopping & bills. Add to that the additional load of wondering if your child will be able to use more than two words to answer how his day was, or the listening over and over to the movie list we need to buy while trying to help another child with homework. It is exhausting. Many of us have lost friends that could not handle the situation. We don't really know much about the girls’ night out and free time. Hey, while I am at it, did you know parents with special needs kids divorce more often? Great, one more perk, having to do it alone!
We learn how to function without much sleep. Most kids on the spectrum wake up, and when they do, they are ready to go! They do not care that it is 3 am. You don't just say go back to bed. We are tired, and we get cranky. Catch me on a day with 3 hours of sleep and maybe I will trip the next lady who tells me I don't know how to parent!
We are mind readers, for many of us, our kids do not verbally communicate, so we become skilled at reading body language, facial expressions and all in between. We know what you are thinking and sometimes your thoughts are not so nice! Watch that!
We have crazy big fears. All parents do, add to them: Will my child be able to cross a street alone? Will my child be able to live independently? If not, then what? (I can't go there yet) The list is actually too hard for me to even continue, but you get it, right?
As strong as we can be, we break down, we feel alone and we are scared. Many of us don't have a strong support system and we like to be hugged! This is not easy and always being on guard is hard. Our brain hurts from juggling all we do!
Many of us have other kids that also require our parenting. Our special needs kids usually consume our time leaving much guilt and feelings of inadequacy in letting our other kids down.
We know we are on a journey and our path is not paved nor does it have a clear direction. We live it every second of every day thinking and wondering. We try new therapies, read books and do crazy things. Anything that may help our child have a better quality of life. Wouldn't you? Relate it to a loved one that may have cancer, you would go to the highest mountain for a vial that may cure if someone told you it worked!
I have found my voice and it is to share, help and advocate for all families that do it a little differently.
To all of you that may think about crossing this Autism Mom- Think Twice: I am not giving up or going away!
