It's something you can't understand unless you're there. The life of a special needs mom. Being a mom (or dad) is hard as it is. Being one to a child who has special needs is something entirely different. Sure, we take it in stride, often making it look easy. Don't let that fool you... it's never really easy. There are things we don't tell you. Things we don't complain about for fear of looking weak, showing fear, or being selfish.
Most parents take their children to the doctor for their routine checkups. Immunizations... well visits... anytime they get sick... maybe a total of about 12 times a year. Our kiddos go about 12 times a month. Therapy... specialists... more specialists because the first didn't have an answer... more therapy... with the immunizations and well visits thrown in there. Not to mention being in constant fear that you're doing SOMETHING wrong. Side effects and symptoms ALWAYS hovering in the back of your mind so that anything out of the normal sends you spiraling into a mixture of sheer panic and trying to stay calm and convince yourself that everything is fine. There is a constant fear that the doctors and nurses have labeled you as "the crazy lady" because your only way of telling them what's wrong is "something just isn't right". And the satisfaction of hearing, well, you were right... followed by the punch in the gut of realizing that means more doctors and needles and scars.
Therapy four times a week with four different people. All giving you "homework" to do. The fear that if you can't get to all of the homework, the next week when you return, they will think you a horrible parent. Spending 20 minutes working on sitting... and 20 minutes working on crawling, and 15 minutes designated play time where you have to do these certain things... it's hard to squeeze that into an already crazy schedule.
The worst is when you stop getting invited to anything because it is just assumed you won't be able to or don't want to go. When you invite us to go do things with you... it isn't that we don't want to go. We have to prepare. How long are we going to be there? Are they going to have balloons? Dryden can't be around latex. Will they have somewhere for us to sit? How many other kids will be there, Dryden is very sensitive to sound. Will people be staring at his scars? Will we have to answer a million questions? Do we have to hear the constant "what's wrong with him?" that comes with every new encounter?
YES, we want a "girls night out"... but wait... can I find a sitter? One that I can trust to do everything Dryden needs. Make sure he wears his brace. Don't let him just sit in front of the TV. Oh, wait, watch that leg! Make sure you don't feed him this. He can't feel his legs so make sure you are aware of them for him!! So while you have your girls night... although we are the ones who NEED IT THE MOST, it is rare that we will actually get to go.
When you invite us for a play date... Dryden will rarely get to actually play. He is just getting to where he can sit up, but is still pretty wobbly. The other kids his age are crawling and walking and climbing... very rarely sitting still. He will be sitting alone watching the kids pass him up. And while right now, he doesn't care in the least... as a mom watching, it hurts deeper than you could imagine. But we hold it all in... until we get home and have a breakdown.
I remember when Tina was little... when she was ready to sit, she sat.
When she was ready to crawl, she crawled.
When she was ready to walk... she just did it.
To a child without any disabilities, things just happen. You don't have to DO anything except watch and be proud. Imagine if that wasn't the case. Imagine that instead of only worrying about feeding, napping and bathing you had to teach your child how to do everything. While it may seem a minuscule task... it is not. It is at times very overwhelming.
While you watch your kid sit up for the first time, we have to teach Dryden how go from laying down to sitting up... over and over and over and over.
While your little one is crawling around, we are watching as Dryden struggles SO hard to get that toy that's just out of his reach.
While you watch your child stand for the first time, we have to get Dryden to realize that he even has feet... that something he can't even feel is somehow attached to his body and can be used to stand up.
While you are getting frustrated because your child is running away from you, we are quietly sobbing inside wishing that just for one second, it was our child.
I'm writing this, not because I want pity, but because you should know. If you know a special needs mom, just tell them they are doing a great job. Be prepared for it to be shrugged off as if what we do isn't THAT bad... but don't let it fool you! Give a hug. Sometimes, we REALLY need it. And if we break down crying... it's nothing you did... we are just overwhelmed, over-stressed, and -just for a second- can't be supermom.
I found this online recently too and wanted to share it with you. It is from a blog about Special Needs Parents. Please read through them... I found myself in awe that someone had the EXACT same feelings as me.