That's What it FEELS Like to be a Special Needs Mom

I often hear parents of special needs children saying that others just don't "get it". They feel judged by outsiders who think their child is a “wild-child” or just needs discipline.  I try to remember back before I was a special needs parent.  How quick I was to pass judgment and say “well, if that was my child…” as if I had all the answers.  

I remember when JC was a bit younger, he was having an especially difficult day.  We were involved in a parent group activity I felt so horrible that my child was acting this way.  I was so worried about what all of the other moms thought and how I must look like a horrible mother.  No one knew of JC’s diagnosis or history.  So to them, he looked out of control – and I looked like I had no control.  But one mother said to me, “I have been so impressed by how you interact with your son.”  I almost cried.  How wonderful of her to notice, and then share that with me!  From that day on, I no longer worried about what it looked like from the outside.  Because for every one person who may think negatively, there are 5 others who may realize that I am doing the best I can.  And it doesn’t really matter anyway does it?    Aren’t we supposed to be oblivious to what others think of us?  Aren’t’ we supposed to know that we are strong and have our child’s best interests at heart no matter what anyone else thinks?  I hope you are having better luck with that than I am.  

We are our own worst critics as mothers (all mothers, not just special needs moms).  We second guess ourselves, feel an overwhelming amount of guilt over things that we realistically cannot control, and hold ourselves to expectations that are unattainable.  So it’s no wonder we feel judged by outsiders because maybe we project our own feelings onto others.  

Bottom line, being a mom is hard.  As the mother of a special needs child, our struggles may be different than someone else’s but when you look deep enough the feelings are very similar. 

So I wanted to put together examples of what it feels like to be the mother of a special needs child.  Examples that all moms can relate to and maybe when we all realize we are more similar than we thought, we can all judge each other(and ourselves) a little less.  

What does it FEEL like to be the mother of a child with special needs?

Think about...

That feeling when your child is sick, but you can't do anything to make it better. You feel helpless and all you can do is hold them.

That's what it feels like when my child has a meltdown because of the slightest frustration or variation in his expectations, and I can't do anything to fix it. I feel helpless and wish I could do something to make it better. 

That feeling of heartbreak when your child didn't make the football team, or cheerleading squad, or basketball team.

That's what it feels like when I see my child struggling to self-regulate, rebound from frustration or deal with social situations. My heart breaks for him, but I can't turn the situation into a life lesson about trying hard and "better luck next time". It's a constant struggle, and the only lesson seems to be that slow and steady progress will take time.

That feeling when you have been working for  hours to help with a project of studying for a test, and the longer you try to help, the more frustrated everyone becomes.

That's what it feels like when I try to teach my child how to play a game and the rules are so abstract that he refuses to participate in any way other than his own. Or when he becomes set on doing things a certain way, and as much as I try explaining that it doesn't work that way... He continues to insist. 

That feeling you get after the unending fight to get your kids to eat their veggies.  The frustration, the "just one bite", the "no dessert until you eat!"

That’s what it feels like every day.  Imagine your child refusing to eat ANYTHING.

That feeling when your child starts a new school. You are anxious about how they will fit it, hopeful it will be a good fit, and worried that it won't be.

That’s what it feels like almost every day as we enter any situation. Even a common experience can feel new depending on the mood, level of stimulation, subtle changes in environment rile expectations... or any other factor. 

That feeling when you have had such a long day and you can't stand the argument over whether or not they can watch TV before bed because all you want to do is have peace and quiet.

That's what it feels like when you see us in the grocery store or restaurant and I allow my child  to watch the ipad or eat cookies out of the bag because I have fought him all day over far more important issues like wearing clothes, and at this point I just want to finish the shopping trip or restaurant meal without a meltdown. 

That feeling when your child lashes out at another or jerks a toy away and screams. There is an expectation that 2 year olds don't want to share. We spend time teaching them appropriate social habits, and they learn them through experience and through watching others. 

That’s what it feels like on a regular basis because my child struggles to understand those social rules. "Teaching" means not only telling him and redirecting his behavior, but also using social stories, video modeling and a whole lot of hovering. The end result may eventually be the same.  He will learn what behavior is appropriate and what is not.  But the path that we take is long and winding. 

That feeling when your child cries for you after you leave then at kindergarten for the first time.

That’s what it feels like when my child is so attached go me that he will not allow anyone else to care for him.  I love having such a close connection, but for him it is a security issue. I "get him". I have always been there with him. I know how to make rough situations easier. I am the only one who can calm him after a meltdown or tantrum. It drains me to the core, but I am the only one he wants in those situations. 

That feeling of embarrassment after your child knocks over a display in the grocery store or spills his drink at a restaurant.

That’s what it feels like anytime we go out.  Loud screams, running around (unless buckled in a cart), climbing over chairs and under tables in a restaurant. We don't go out much unless it is a place with a playground. 

That feeling of exhaustion when your baby is a newborn and is up several times a night and then needs your constant attention during the day too. 

That’s what it feels like, even three years later.

That feeling when you are the first of your friends to get married or have a baby.  Everyone else is still living the single life. You don't fit in anymore. Your lives are so different.  You lose touch.

That’s what it feels like as the parent of a special needs child.  You have no time for play dates because of all the therapy sessions.  In fact, you look forward to therapy sessions to have someone to talk to that understands what you are going through. And even if you had time to schedule play dates, you know your child isn't that great at play dates so it isn't a fun experience for either of you. So you relinquish yourself to hanging out at home and are so thankful for the other special needs parents you find along the way. 

That feeling of defeat when your child is given an antibiotic or steroids that hype them up so much that they are bouncing off the walls.  And all you can do is count down the days until the medication is over.

That’s what it feels like every day for a child who has sensory issues.  They play hard and crash hard. Any it never wears off. 

But now think about…

That feeling you get when your child takes his first steps, says his first words or smiles at you for the first time. That amazing feeling that all the sleepless nights are worth it and you can't imagine life without that sweet face.  The pride you feel when your child wins a competition or advances to a new level of something after trying so hard. 

THAT’S WHAT IT FEELS LIKE even after the smallest accomplishment, because I know how far he has come.  The most simple request to “help me” brings tears to my eyes because he is FINALLY using language to ask for what he wants.  The act of saying “I’m sorry” after a tantrum or meltdown has such huge implications that I can’t even describe how proud I was at that moment.  THAT is what every day feels like as a mother of a special needs child.