Being a special needs parent comes with so many complex feelings, it is hard to describe. Much like standing over the Twin Towers after the fallout, when you have a special needs child, at times it can be unimaginable. Most come with a myriad of health conditions and concerns, that pretty much keep you occupied with the distraction of life saving and during the time, you don’t even notice that your friends, your family, and what you consider “normalcy” are no longer in your life. What no one really understands from the outside is how lonely and isolating special needs parenting can be.
It Isn't Easy, and at Times, it is Horrible
From the minute women conceive, most have already named, envisioned, and planned out the life of a growing fetus. Almost all of us have the expectancy of a “normal” child, a normal household, and a normal day-to-day, but then things become what feel very abnormal. When you see special needs parents the one thing that stands out is the commitment that they have to caring for and defending their children. From someone who has been there, you may fail to see the war-torn emotions that lie just beneath the surface. Although most would never say so for fear of it even being uttered out loud; it isn’t easy and at times, it is horrible.
We Learn to Dance
We learn to dance in a way that protects our child from the world, the world from judging our child, and ourselves from feeling the sting of the rejection that is so obvious. People try not to gawk, stare, or comment on what they see, but as a special needs parent, you see it and you feel it. Perhaps what is hardest is that we feel pity pretty much everywhere we go, and sometimes pity is worse than scorn.
What you also can’t see or hear is our inner voice. On the outside we play it like we’ve got it handled and that everything is doable. After all, it is your job as a parent to accept your child, provide care and love, and most importantly, to stand up for them. But, how do you stand up to the worst critic, the one judging the harshest, and even at times, the one who doesn’t accept your child fully the most; yourself?
Shame Can Keep us From Being Engaged in Our Own Lives
For special needs parents, the shame of being ashamed is like a double edged sword of guilt that cuts extremely deeply and can keep us from being fully engaged in our own lives. When you think to yourself, “Thank God I don’t have to deal with all of those medications, IEP appointments, doctors evaluations, lost nights of sleep, worry,” we are thinking it too. You, however, don’t have the guilt of feeling what you do because you are being sensitive to our plight. We, however, feel guilt because we shouldn’t feel guilt - yep, the shame of being ashamed.
You Hate the Things that Saddle You
There have been moments in my life where I wished that my family was normal, but then I have to recognize that that would mean a life without Tayt and within that thought lies the most shame that a person can feel; not wanting your child to be who and what they are. Of course you love them, but at the same time, you hate the things that you are sometimes saddled with. You hate not being included in normal activities with other normal children and friends. You hate the quiet whispers about your life, so as not to offend you. You hate always being on the outside looking in. And most importantly, you hate yourself at times for feeling that way. You have witnessed first hand the hardships that your child has endured, lived through, been ostracized with, and the resilience that it truly takes to be a person with disabilities, and the thought of making it all about you feels selfish, ugly, and everything that a parent is not supposed to be.
We are NOT in Denial
That shame is something that you try to shelf, put out of your mind, turn into a positive by doing all that you can to make your child as “normal” as can be. Sometimes, from the outside, that can feel like denial, but I can tell you with some assuredness that nearly all special needs parents are a lot of things, but not in denial. We live in the most “normal” world we can and the one that people will let us fit into.
It Can't be all Ugly, Can it?
Writing about the feelings of shame that I sometimes experience and harbor is shameful. It feels wrong, dirty, and uncaring to even put such things in writing, but if I put it out there into the universe and help someone to feel okay about not being okay, then it can’t be all ugly, can it?
Parenting is Hard Enough
For those special needs parents who are out there, you are doing more than you know. Parenting is hard enough, when your child has special needs, it can consume you, make you feel like an imposter because the strong person that you display to others is sometimes only a mask.
There are times you want to run, say “That’s not my kid,” give up, un-care, let things be, but you can’t. Much like running a marathon, you have to get over the finish line. The cruelest part of it all is that unlike other children who cause trouble in your life, rob you of sleep, immerse you in worry, and exhaust you with their behavior and needs, special needs children don’t just grow out of it.
You don’t wait for a time that they are adults and capable of being on your own. You don’t know that eventually they will grow, learn, and not be a burden, they will be children forever, in the respect that they will always need you to survive. And yes, at a certain point, they stop thriving and are stuck at a stage that they won’t move past or grow out of.
Give Yourself the Grace you give to Others
It's okay to hate some of the things that come with being a special needs parent, it says nothing about your love, commitment, or value and worth of your child. It is just hard, yes, it can suck, and it can be an energy suck, but as only you and I can understand, on those days when things aren’t going terribly wrong, it is worth it.
Hang in there and know that we are ALL human, do what we can with what we’ve been given, and deserve to give yourself the grace that you give to others. You aren’t alone and there is no shame in being ashamed of things that fall outside of normal, that is why it’s called normal. It is the way it is supposed to be, for which it is not.