Dear Special Needs Parent,
I see you as you wipe the tears from your eyes after another really long day. You are exhausted and stressed out and at the end of your rope. Nothing is going right, nothing is easy, and nothing feels like it will ever get better.
I can remember the first time I had the thought that things will never be okay again. That this was how our life would be, forever. It’s a moment that took my break away. A moment quickly followed by tears( lots of tears) at my own failures and then at the horror that I doubted that he would get through this. It is so isolating being a special needs parent. Sure, maybe you have friends, and they try to understand, but then you have friends who don’t. And soon it feels like maybe it’s just you against the world. And part of you might even envy your friends who have typical children, and you know you love your child fully, but it’s there. You can’t remember the last time you went out on a whim, did anything without mountains of prep for your child to participate and all you wanted was to do the pumpkin patch, a farm, or bounce house like any other family without leaving halfway through. You can’t go to a place where your child hasn’t had a meltdown, everything is fair game. You’ve endured the eye rolls, the suggestions, the criticism from strangers, family, and friends. And none of them see the hours you put into therapy, in the work you do daily with them on your own, or the constant emails and phone calls with the school, all to ensure that you are doing everything in your power possible to improve their life.
And just when it feels like maybe it’s all too much, you meet another mom in the school library while her kid rolls around under your feet and you think. Oh. My. Goodness. She gets me! It has been almost 6 years ago since that chance meeting in the library and it’s something that truly changed my life. For the last 6 years, I have started to build a little tribe of strong, thoughtful, caring women, who all happen to be special needs moms. I cannot stress enough that you find another special needs parent who understands, no, truly gets your life. These were the first people that I turned to when we went through a particularly challenging moment, and the people who point out the good that sometimes even I cannot see.
The emotional wear of being a special needs parent doesn’t just feel exhausting. It is exhausting, In fact, it’s been the focus of multiple studies, in 2005, Johnston and Mash concluded that the presence of a child with ADHD results in increased problems with family and marital functioning (duh!), disrupted parent-child relationships, reduced parenting efficacy, and increased levels of parent stress. And that was just ADHD! Parents of children with ASD, Down’s Syndrome and severe developmental disabilities are found to have higher rates of depression, more likely to experience divorce, and often report feeling very isolated.
I do not want that for you, and I hope you are reading this and thinking of the person who takes this journey with you. It is too much for one person to endure alone. We live in a world with support at our fingertips, online support groups by diagnosis, friends from our past who might be on a similar path as us, and huge social media sites that connect you to almost every single group, and all of these are good if you aren’t lucky enough to live in a community where there aren’t many special needs families. But do not discount the power of a friend sitting on your porch sharing a bottle of wine, or tray of cookies sharing in the laughter and tears of special needs parenting. Support is one of the biggest factors of success. We know this because we advocate for support for our children every day. Start advocating for yourself today.
I leave you with these thoughts,
❤Take time to check on your fellow special needs parents, you know exactly what they need, take 5 minutes and do something for them.
❤ Find one positive moment every single day, because I promise there is one, it might be when that kid finally goes to sleep, but that counts!
❤ Tell your partner/support person you love them, even when it’s difficult.
❤ Grieve the friends you have lost along the way, but don’t let it hold you back from meeting a mom in the library. ( Special needs moms might be found at other locations, try the sandbox, swings, coffee shop, we’re everywhere I promise)
❤ Remember this, Not everyone will let you down.
❤ You can do this, wait, scratch that, You DO this every day, but I promise, it’s so much easier to get through this crazy life with the support of a good friend.
“A friend is someone who helps you up when they can, and if they can’t. Lays down beside you to listen”
Winnie the Pooh, a wise old bear