Special Child, Special Situations
My son, Michael & I.
My son, Michael is a special needs child. No, he was not born this way. What happened to Michael is something that could happen to anyone. Michael was in a car accident at the age of 4 that left him with multiple disabilities, all stemming from a traumatic brain injury. One day I had a perfectly “normal” child, and the next day I didn’t. It happened that fast, and that was it. My life, and Michael’s life, was forever changed. There was one thing that didn’t change, which was how much I love my son. He may not be the child I always pictured I would have, but he is mine, and he is here. After nine years of dealing with his recovery from his traumatic brain injury, I have learned that there is one stigma that our family, and families just like mine, cannot get away from. The ignorance of the general public when it comes to special needs children.
Michael was in a coma for about five months. For any one person, that is a long time, but for a mother watching her child each day by his bedside, it’s an eternity. Seconds turn into minutes, minutes into hours, hours into days, and days into months. Therapy going on practically every second. Tracheotomy, G-Tube, you name it, I learned all about it. How to care for him, how to clean him. It was like being in some sort of warped parenting class that I didn’t ask for. I still did it all. Late at night, after he would fall asleep (I knew this based on his heart rate monitor), I would sneak into the family computer room at the hospital and research traumatic brain injury, pediatric brain injury, recovery time, prognosis for his age group-all of it. I didn’t realize it at the time, but this was me, learning how to be a mother to a special needs child. This was me, adapting to change. I didn’t have to like it, but here I was, doing it for the love of my child.
I remember the day they discharged Michael from outpatient care I was a nervous wreck. It was like having a newborn again, but this one weighed about 45 pounds. I had so many questions. Could I really do this? What if something happened to him? Who was I supposed to call if I had a question? My whole world was surreal. It was as if my family was moving slowly throughout a fog, lost and confused. We pressed on.
I recall taking Michael out to the mall in his wheelchair for the first time, and the stares we would get. My husband would gently touch my hand and whisper in my ear, “Who doesn’t want to look at a badass kid with a mohawk and a cool scar on his head?” He meant well, but even you know they were staring at the kid in the wheelchair. Eventually, you get used to the stares. Sometimes you even stare back. Often times, I would overhear a child ask loudly, “What is wrong with that boy?” and watch as the parent would shush them to the ends of the earth and run in the opposite direction. Oh, how I wanted to scream “COME BACK! Let me educate you!” I never have.
As my son began to recover, the wheelchair switched to a walker, and since then we now mostly hold his hand for some added assistance. His speech is very difficult to understand, as he was later diagnosed with aphasia, apraxia and dysarthria -all speech disorders that happen when there are injuries to the brain. He can see, but needs glasses. He can eat most things by himself, but if they are difficult to get onto a fork, I sometimes still have to feed him. He can use the bathroom by himself, but can’t undo buttons. All minor things when you look at the bigger picture, I know. At least, most times they are.
In the nine years since Michael’s car accident, there has been one, singular person who has ever had him over to their home to play with their child. Popular as my son is in school-and let me tell you, he most certainly is-he very rarely gets invited anywhere. Birthday parties are scarce, play dates were practically non-existent. I had one person, a “friend” whose child I always welcomed into my home to play with my daughter, tell me right to my face, “I would invite Michael over to play with my son, but I just don’t know what I would do with him.” I never invited her child over again. This may sound extreme, but I really just couldn't bare to look my friend in the eye anymore. How could I, knowing how she felt about my son? My beautiful boy, who had survived so much?
Recently, we moved to a new town not far from where we used to live. The homes are much closer together, and once Michael started school here, he made tons of new friends. I was so excited to come home from work one day to find bikes all over my front lawn. I walked in the house, and my husband said there were about 10 children piled into Michael’s room, all wanting to hang out with him. Moments like this are so few and far between in our life that I cherish them every single time they occur. I hold onto them for as long as I can, take photos, blast it all over social media pages. I revel in the days when we feel “normal” again.
A few weeks ago, Michael was invited to a birthday party. Birthday parties make most parents panic, but for a special needs parent, we go into a full-blown anxiety attack. I texted the mom and told her that I would be willing to stay, since Michael had never been to her home before. She quickly replied back, saying she would love it if I would stay and hang out with her. I felt a twinge of relief here, because I was thinking that this mom might want to get to know me. Maybe I was going to gain a new friend out of this. This could be exciting! I try not to do this to myself too often, because it usually leads to disappointment.
I get to the party and Michael quickly runs off (as best he can) with his friend, the birthday boy to the basement. I help him as little as possible, because I am in a position where I know he does not want me to embarrass him, but he still needs a little assistance. I’m checking out the rest of the home, and it’s not too big, nor is it terribly difficult for Michael to maneuver. I have a seat on the couch in the living room and am offered coffee. I start to get comfortable, and make an attempt to relax. It never happens.
It’s a birthday party for a kid I don’t really know, and whose mother I really don’t know. I’m still new to this town-a small town-where just about everyone knows everyone else. The mother’s friends are knocking at the door, not even coming inside, just dropping off their kid and yelling in “See you at 7!” This happens at least ten times, and all the while I am sitting on the couch alone.
Mom sits with me for just a few minutes, and then reality hits when she looks me in the eye and says “I’m so glad you stayed. I’ve just never had to deal with someone like Michael, I wouldn't know what to do.” The doorbell rings, and she pops off the couch and is back to her friends.
She has now moved to the next room chatting with the other girlfriends that did stay, and I sit in the living room on the couch, only acknowledged when Michael asks a question they can’t understand, or when he needs to use the restroom, or come up from their basement.
Pizza arrives, and I am relieved to see it’s from a chain restaurant and not a local pizzeria because the local pizza is difficult for Michael to eat on his own. I take a breath knowing I won’t have to be the only parent feeding her almost 13-year-old son pizza in front of his friends and some of their parents.
Mom pops her head in once in a while to make sure I am okay, but never invites me into the kitchen to meet her other friends or get involved in the conversations. My professional field is Social Media Management, so I am quite the social person, and yet, I couldn’t even bring myself to try to get to know these people. It has been years since I felt so singled out, and frankly, I had no idea what to do.
Now time for cake, I pray that it’s something that Michael can eat on his own. My heart sinks when I realize it’s not. It’s a fluffy cake that he can’t seem to get on his fork. Right there, with onlookers and everything, I sneak in and put each bite on his fork for him and watch him struggle to get the bits into his mouth. I try not to look at the people around us, the ones staring, but i can’t help it. They are doing it, and I am creating all sorts of scenarios in my own mind about what they must be thinking. It was so uncomfortable for me, but not for Michael. He happily sat there with his friends, who didn’t stare and didn’t judge, and laughed and made messes themselves.
As soon as cake was finished, I packed up my son and we headed home. My big concern was crying like a baby in front of my Michael. He sat in the back of my car on the short ride home and asked me “Mom, did you have a good time?” If my son only knew how many times I have had to lie to him since his accident. “Yes, of course!” I cheerfully say.
When my husband gets home that night, I bawl my eyes out in his shirt. I’m having a “life’s not fair” moment, which I don’t have a whole lot anymore. My husband, my amazing support system that I could not survive in this life without, just holds me and tells me as long as Michael had fun, we will get through the tough stuff on our own.
My upcoming plea is not just to parents who have children who are not special needs, but also for parents who are. Parents who feel this pain as I do, who go through each day, dealing with the stares, the whispers, and the blatant disregard for your feelings. I know the days of being an advocate are full and difficult. I know we are tired of repeating ourselves, of dissecting every medical term for people who are lucky enough to not have a clue what you mean. We have to keep on keeping on. The only way for people to understand how we feel is if we open our mouths and speak. It is our job, our duty to our children, and to all the children of the future who will suffer from the diseases and disabilities that our child is currently facing, to educate the public on how to treat these children because they cannot do it themselves.
To the parents of children who do not know what it’s like to have a special needs child, my best advice is this:
- Think carefully before you speak to a parent who has a special child. Sometimes, you come off cold and heartless, and we know you aren’t. If you know you are going to sit down and get to know someone who has a special needs child, take a few minutes to think about questions you want to ask, and how you think it’s best to ask them. We are used to giving the answers, so don’t be afraid!
- Don’t shun us, or our children. While there are many special needs children who have needs that don’t allow for sleepovers or parties, the feeling our kids get-or that WE get as their parents-to know they were thought of enough to be invited, it means a lot. We are parents, just like you, and they are children, just like yours. The only difference is something that we couldn’t control happened to our child. It could have just as easily happened to yours. Be thankful, but be kind.
- Plan. As a special needs mom, I have to meticulously plan my entire schedule so we have a routine that works around countless therapies and appointments. If you know you are going to have a special child over your home, think about asking the parent to come by for coffee beforehand so the child can get used to your home, and so you can ask questions, privately. You may realize that that special child really is just like your child, and you can manage to supervise the child alone.
- Don’t pity us, but especially do not pity our child. While I am always open to making new friends, I certainly don’t want to get to know someone who simply feels bad about what happened to Michael and thinks they owe it to us to be in our lives. You don’t have to be friends with every parent who has a special kid, but make a real attempt to get to know us, and you may have a friend for life, as well as a friend for your child.
Addressing a special needs parent can be a delicate situation. For the mom with the “normal” child, as well as the special needs mom. With open communication, and understanding that we are just parents like everyone else, we may be able to create a world where kids like Michael aren’t stared at, aren’t treated like glass, but are embraced and accepted. We are all parents together, and the special needs parents should not have to live in a world full of anxiety, fear and sadness that we sometimes do. So, if you have been on either side of the story that I shared, think about what you would have done differently, and do it. “Be the change you want to see in the world.” -Mahatma Gandhi
Nicole Wight is the mother of two children, Mackenzie, 14, and Michael, 12. She lives in Lakehurst, NJ with her husband of nearly 15 years, Aaron, who is proudly serving in the US Army at Joint Base MDL. If you have questions for Nicole, you can e-mail her at firstname.lastname@example.org
Michael with our cat, Stormageddon.
© 2015 Nicole Wight