Let me preface this post by saying that this is not brought on by anybody in my life or in my recent encounters. So, please do not re-examine every interaction you've had with me in the course of your relationship with me. This post comes from the discussions I have been following on various support forums as well as on Facebook posts from the Children's Hospital Boston and Parents Magazine. The posts have centered around the top things parents with special needs or chronically ill children don't want you to say.
Now, we all have to admit there are insensitive and uncaring people out there. There are also people who don't think of the impact of their words before they leave their mouths. They are curious, or they have no filter - I accept that these people exist. I once had a mom who said to me, after working with Molly's class, "Your daughter absolutely needs a 1 on 1 aid, she can't even hold a crayon." Now, I knew this, and I had probably shared this sentiment with friends in a different way. But this mother, with no expertise, just decided to shout it out across a crowd of parents. I have a good friend who still wants to jump her and it happened over a year ago! Insensitivity is one thing, but caring and not knowing how to express it, is clearly another.
I was really put off by the discussions that resulted from these posts. Some of these parents of special needs kids were down right offended by someone saying "I don't know how you do it" or "I don't think I could do it if I were in your shoes". Now, I will admit, I was not a member of the audience to witness the tone of these comments, but the thought that it would be insulting has been bothering me.
Upon hearing my story or a day in my life, or what have you - I get this comment a lot. I've always taken it to mean that they person listening to me or observing me is truly in awe of the struggles that life presents us. They are trying to commiserate, but without having direct experience to draw upon, expressing that is the best they can do. I see it as someone admiring me and what I do daily.
I don't think I'm all that special. I think that just about anybody put in my position would do what I do. I've gotten to know a great deal of parents with special needs kids. It does change you. It changed me for the better. Are there days when I wish I could trade places with the parents of typical children? Sure, but only for about 5 minutes. Some of the quirks that make Molly and Kennedy "special" are also what make them Molly and Kennedy - and I wouldn't change who they are for a second!
So, my answer to people who express the sentiment of "I don't know how you do it" is, I don't know how I do it either, I just do. This life is my typical. I find my strength in my girls, and in my faith that I've been put here for a purpose. That purpose may not always be clear and the path may not always be easy - but it's our lives and we're thankful for each day we get.
My mom shared with me a sweet story a few years ago after an event that changed me. Molly was probably about 2 1/2 and we had gone through a horrible medication change, where I didn't know who my little girl was. She would meltdown at the drop of a hat. We couldn't go any where in public without her screaming her head off - it was a very difficult time. She was always a taller child (after she outgrew the preemie stage) and looked older anyway. We took her to Friendly's - a kid friendly restaurant. She was tired, she was altered and she was crying. I was trying everything. An older woman in the booth behind us leaned over to Molly and said "you need to be quiet you are hurting my ears". With tears in my eyes, I picked Molly up, told my mom to cancel our orders, apologized to the waiter loud enough so the woman would hear and said, "I'm sorry, she has special needs and she just doesn't understand". I bawled my eyes out. It wasn't that the woman was so callous towards my daughter. It was just that that was the first time I realized this was my new world and my life. That I wouldn't have those typical excursions that other families were enjoying. Of course, I've come a long way since that day. I've found ways to help the girls cope, I structure excursions around their schedules and not mine, I even utilize technology if they have to wait. We have structured our lives to make them successful in the outside world.
After that moment in my life, my mom told me something along these lines. She had been traveling for work for quite some time and would encounter many families and children on airplanes. Her first instinct at a child throwing a tantrum in the middle of the airport or having a meltdown at a restaurant had always been to judge the parents. What weren't they doing, what were they doing wrong? She told me that since having Molly in her life, she's learned that it isn't always the parents. There are so many kids out there that just can't help it. Now, I'm not excusing every poorly behaved of tantrum-throwing child you encounter, but I do think that before you judge, you should consider the possibility that the child's behavior is out of the parent's control for medical reasons.
Feel free to ask me questions about my girls. When you ask me, I know you are trying to understand our lives and them. You are being my friend and you are showing you care. Just know, not every parent of special needs kids feels this way - a reality check to me! So perhaps instead of "I don't know how you do it", you could instead just ask them how they are doing or how the child is doing. Never worry about what you say to me! I'll always give you a straight forward answer. I'm human, there are bad days and there are amazing days and then there is every other day. One thing never changes though, I do it because of my two very special little girls!