Special needs parenting changes everything. It changes how you look at every single thing in your past, present, and future.
I catch myself asking all sorts of questions…
How did I get here?
Why do I feel so alone and tired? Is it possible to throw in the towel today?
Do I have it in me to keep going at this pace?
Special needs parenting will push you to the utter limits of exhaustion, with bags under your eyes, pounding headaches, and the desire to just lock yourself away with your child for what will feel like forever.
It will test your marriage, wreak havoc on your health, drain your bank account as you find ways to pay for every waking hour of private therapy available, diminish your friendships and definitely keep you from making new ones.
You’ll have moments of pure elation when your child hits a milestone you didn’t see coming followed by days of tearful pleas to God, and whomever else can possibly perform miracles, when your child plateaus with progress and seems to be stuck in neutral.
But, when life is good you relish in every single second of it. You try to slow down time so that you can feel this sense of nirvana for as long as possible because you know it may not last much longer, but for your own mental, emotional, and physical health you need it to.
You take hold of the moments when your child is content. He’s smiling and laughing, playing appropriately and working so hard to use the wealth of words you know he has plenty of in that wondrous and brilliant brain of his.
You grab your husband—your partner and best friend—and burst out crying with tears of joy—and not despair—for a change because you feel a sense of hope and relief wash over you. This sliver of euphoria transfers to every other facet of your life and for that brief moment in time all seems right in your universe. You wish you could capture it in a bottle and consume a little every time your spirit starts to wane.
I wish I had that magical elixir right now.
We’re currently plateauing with Nico. There’s really no progress and it has my anxiety and despair at an all-time high. I’m trying to reach him; drowning out all the distractions and pushing him to just look at me and listen to my voice on a daily basis.
I tell him over and over again that I understand how hard his brain works and I know it can be tough to focus, but that it’s just him and me right now. I kiss him and hug him and profess my utter adoration for him because he is such a great kid!
“Talk to me, Nico. Use those words that I know you have. Ask me a question. Or, answer my questions. Mommy wants to talk to you so badly. Don’t you want to share something with me? Tell me what you’re watching? Why do you like this video? Please! Anything!”
Nothing. I get nothing. Just eyes looking through me and past me. There’s language, but not for me. It’s him scripting something he has read or watched recently that he is now fixated on. I’m angry and jealous because his therapists tell us a different story when we pick him up from his sessions. How he answers questions. How he asks questions appropriately. How he uses his words with them.
What is it about me that keeps his communication at bay?
I kiss his forehead and hurry to the bathroom so he doesn’t see me fall apart…again.
I have been clinging to some promising news that he has friends from class who have RSVP’d to his birthday party. This has been keeping me afloat as of late. The first party ever that we were brave enough to invite kids from his class. We were encouraged when we heard that he had lots of “best friends” in his class who “helped him” and thought he was “so cool.”
We decided to take the leap. Invite the class to his party. We are thrilled with our 2 RSVPs and hope more kids can make it, but this birthday party will be fabulous for Nico no matter what like all his other birthdays have been because of our family who shower him with love and always show up. His “protective shield” as I like to consider them.
They’re my protective shield these days too.
Special needs parenting is truly throwing me for a loop. I’m trying to keep up as best I can. When it’s good, it’s great, but when it’s tough, it’s debilitating.
I am working very hard though to be thankful for all that I have and all of the growth we have seen in Nico. ‘Tis the season.
I’m BEYOND thankful for his “best friends” in his class who keep an eye on him and accept him for who he is.
I’m thankful I have a husband who is on this journey with me; it’s infinitely easier when you have someone who can pick up the pieces when it’s too difficult to do anymore in that moment and has a glass of wine waiting when I’m working to bounce back.
And, I’m thankful for our little one, Max. Sometimes we don’t even have time to think about being special needs parents because we have a child so drastically different than Nico that he makes Nico and his Autism look like a walk in the park.
Max is giving me the healthy dose of perspective I need and the jolt of exuberance and laughter necessary when I am drowning in moments like today.
I know Nico will be fine. We will make sure of it because he deserves nothing less. He has given us nothing but extraordinary love which fuels me every single day to get up out of bed.
Today was a crap day. Tomorrow, I hope, will bring with it renewed hope.
Yes, special needs parenting turns life upside down. It throws curve balls and wrings you dry of almost all life, but then….
in an instant, can transform you into a version of yourself that looks and feels even better from the inside out. I promise. Just trust and believe in yourself and your kiddo.