Nobody is perfect. We’ve all got something going on — something that makes us different from everyone else; something that may physically, emotionally, or socially disable us in some way; something that makes it more difficult for those we know and others we love to deal with. Parents of children with special needs know this truth deeply and they feel the truth of the meme at the top of this post deeper still. Yesterday on The PediaBlog, we caught a glimpse of the emotions parents of children with special needs feel in the daily struggle to raise a child with attention deficit and hyperactivity disorder. But ADHD is just one of many cognitive-behavioral and medical conditions that challenge children, families, teachers, pediatricians, and neighbors. Many developmental, cognitive, and medical “imperfections” often don’t occur in isolation. Rather, there can be a number of challenges related to one or more primary diagnosis. Regardless of the specific diagnosis or diagnoses, parents of children with special needs often feel alone, unsupported, unloved, and misunderstood while at the same time comforting, supporting, and loving their child with every fiber of their being. A friend of mine posted this open letter recently on Facebook that resonated with me. While I envision every parent of a child with special needs nodding along knowingly as they read it, I hope this letter, posted here with the permission of the author, resonates with every parent.
Dear Autism/ADHD Parent,
This is *hard*. Special needs parenting is isolating, scary, and completely heart-wrenching. This gig comes with an unfair share of stress, strained relationships, and uncertainty. People don’t understand what they can’t see, and they sure as hell can’t see the invisible yet all-consuming force that is ASD/ADHD. Parenting such a child is full of intense ups and downs that often makes it feel like I’m not actually living, I’m just surviving. Empathy and support seem to be in short supply when I need it most and things start to feel unmanageable and like I’m losing my damn mind. Sound familiar? Then hear this:
I SEE YOU. YOU ARE NOT CRAZY.
You’re doing the impossible. Anyone in these circumstances would be struggling. Most people aren’t strong enough to handle what you go through every single day. You are not crazy.
Some people will leave your life because they don’t get it. They lack empathy and you can’t fix that for them (although I know you would if you could). It’s not you, it’s them. You are not crazy.
Friends and family with typical (or no) children can’t see past their own expectations of “normal” and they will judge you. Do NOT get caught in the trap of comparing your “normal” to theirs. You are not crazy.
They don’t know how hard you work just to get out of the house with your kid and how the most ordinary of tasks can take hours to get through and that’s why you’re always late;
How always being late for everything impacts your life;
How limited your options are because of demanding needs and challenging behaviors;
How little you sleep because your child can’t;
How you’re juggling constant appointments that interfere with your job and livelihood and there’s literally never enough hours in the day to get everything done;
How when something has to give, you sacrifice more of yourself and you’re afraid you’re forgetting how to be a complete person;
How there’s no one around to help you de-stress, calm your fears, and wipe away your tears;
How you haven’t had any real downtime in years;
How you blame yourself and feel like you’re failing no matter how many mountains you move;
How you’re learning to navigate the complexities of healthcare and legal systems at a superhuman pace;
How the services and resources you and your child so desperately need often aren’t available, and when they are it’s a never-ending battle that takes everything you have left just to access them;
How you love endlessly while being kicked in the face and cleaning pee off the floor five times a day;
And how sometimes you just need to meltdown because you’re legitimately overwhelmed but you’ve learned the hard way that people you should be able to lean on tend to judge or leave you because they don’t get it so you go through this alone when you shouldn’t have to.
You are NOT crazy.
I don’t have all the answers and I don’t know if or when it gets better, but I do know I’m not the only one going through this, and neither are you. It doesn’t make you a crap parent or crazy person to feel all the feels and let it all out when you need to — it makes you human. Don’t let anyone tell you otherwise. Reach out. If there’s anything I can do to help you, let me. I’m so tired of doing this alone. Let’s not.
(Image: Daddy and Mummy quotes)