I remember it very well. I fretted aloud that my second-born son must be deaf and/or mute. At 18 months, he had no words, minimal mutual correspondence, and displayed eccentric behaviors. My mother-in-law turned to me and quietly said, “I’ve been wanting to say something. Perhaps you should get him tested.” My heart jumped into my throat.
As the next few years unpacked, they were full of speech therapists, testing, occupational therapists, and more testing. He presented as “autistic” – or, as it is termed nowadays, Autistic Spectrum. (The official diagnosis was PDD-NOS.)
Daily, we swaddled him into a “hot dog”; we gently scrubbed his body with a surgical brush (he hated this but within minutes, he would calm down.) Diligently, we strived to gain his attention. On those rare occasions, we celebrated.
For as unreachable as he appeared, disinterested in making conversation or entering into relationship, he sure was aware of his environment. I chose not to wear makeup because it clearly caused him to be on edge. Seldom did we trek anything but the same route to church or the grocery store. Anything different was devastating to him. Like, “I’monfirepleasegotherightwaymooooooooooommmmmmmmmy” kind of thing.
Life with this kid was an adventure!
I had an older son, a younger son, and one on the way by the time we really began to realize the full extent of his unique learning style. People have asked if I was overwhelmed. OH HELL YES. People have asked if I was disappointed to have a special needs child. NO. (Not even for a minute?) NO.
It’s not some saintly thing on my end. Really. I just accepted right from the beginning that there were no guarantees that life would be easy-breezy when bringing children into the world. There were risks. Big freaking risks.
But I’ve learned to view risks as adventures. I have preferences regarding the outcomes of these, er, adventures. But I’ve also taken the attitude that life is happening FOR me, for my growth and evolution. (That which doesn’t kill us makes us stronger? I really do detest cliches, but there is truth in this. We can CHOOSE to allow shit to turn into sugar by our perspective. Easy-peasy? No. Possible? Yes. With practice.)
And a TEAM. I think that this is what helped me the most. I did not raise my children alone. During my toughest moments, I’d call my Mom or mother-in-law. They listened to me for hours. Unpacking my emotions and fears over those years kept me sane. And hopeful.
There’s so much to share when it comes to motherhood. It has been my greatest adventure of all! I wouldn’t trade a single second. My children have been the best teachers ever. They have grown me into the woman I am today.
I’ll tie this up with a story that touched me deeply when I first read it (1995.) It helped me to see with new eyes this adventure I was being beckoned into… reading this changed my perspective on what it meant for me to have a child with needs I wasn’t expecting.
If you’re in the midst of surprises, please know that you’re not alone. Gather a TEAM. Life is full of trying times and tears, yes… but life is also shenanigans aplenty. Opportunities abound. Dig all in!
A Trip to Holland
By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans… the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!”
“Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.
So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, ” Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Energiegal here… Love works. LIFT the vibe of our world!