April 1, 2013

Becoming Special


About a week after my son was born, some friends came to meet the new baby. Carla, who also had an infant, made herself comfortable in an armchair, threw a blanket over her shoulder and started nursing. She looked at me, smiled blissfully, and said “wouldn’t you just jump in front of a bus for him?”

I didn’t want to admit how tired and frazzled I was. Everything, including that “natural” act of nursing had been a challenge. While not exactly opposed to being a mother, I hadn’t quite warmed up to the whole thing. I nodded my head and said something along the lines of “uh huh.”

My transition into the joys of motherhood took a little while. But I did adjust. I learned how to click the infant carrier out of the car and into the stroller. I wore my baby to the grocery store and stocked the freezer with homemade organic purees. My son and I went to play dates and music classes and at four months to the day we began sleep training. And soon enough, I loved my chubby baby with jump-in-front-of-a-bus ferocity. 

And then, just about the time that I was comfortable enough in my role as “mother” to have a second child - six weeks after that second child was born, in fact - a woman with a white coat and distinct Canadian accent looked at me and said “your son has autism.”

Once again I found myself not quite sure how to feel. Only this time, I had no time to get used to the idea of being a special needs parent; there was no “transition” about it. While there was no denying the diagnosis—the signs had been building for months—I couldn’t quite make sense of the words I had just heard.

There is an essay often given to parents of newly diagnosed special needs kids called “Welcome to Holland.” In the essay, you prepare for a trip to Italy. You read up on the culture, pack the right clothes, even learn some of the language. You board the plane. And when you disembark...you are in Holland. Holland is a beautiful place, with windmills and tulips and lovely people. But you were supposed to go to Italy. Pasta! Gelato! Buongiorno! And now you see only wooden shoes and salted herring.

After Moe's diagnosis, my son seemed a stranger to me. Though people told me “he’s the same child he was before the diagnosis,” it certainly didn’t feel that way. In a single instant, he went from a happy, mellow toddler with some speech delays to a kid whose entire future was uncertain. Would he ever speak? Have friends? Go to prom? Yes, in those first days, I thought about high school prom, that silly yet quintessential hallmark of adolescence.

Even the terminology sounded all wrong. How do I describe my son? What reason do I give when I explain that we can’t go to playdates anymore because Moe has 25 hours a week of therapy? I practiced when I met new people. “He has special needs.” “He is developmentally delayed.” “He has autism.” “He is autistic.” 

I started reading blogs by people who called themselves “autism moms” or “special needs moms.” Was that me? I mean, I don’t have the special needs. “Mom to a child with special needs” was just unwieldy. They were accurate, but nothing felt right. How could this possibly be my life?

And all the things people said to make me feel better only made me angry.

God only gives you what you can handle.
Everything happens for a reason.
Special kids go to special parents.

I resented all of it. They say that people with autism have difficulty with transitions, but I was the one who couldn’t accept this new role. I didn’t want special. I didn’t want different. I just wanted my son back.

I spent hours looking for cures, researching diets or methodologies that would help my son “recover” from autism. I read blog after blog about kids who accomplished so much more than experts said they would. They graduated from college. They got married. Some of them even went to prom! And every so often, Moe would do something so “normal” that I knew in the core of my being that he would be okay. That he, too, would be a success story.

In the four years since Moe's diagnosis, I’d like to say that things have gotten easier for us. I want to share with you that story of amazing progress, of undiscovered talents or remarkable beauty. But that is not our story, at least not yet. In many ways, things have gotten harder. My son, who is approaching six years old, doesn’t speak. He is not toilet trained, can be aggressive and often goes for weeks without sleeping through the night. His disability and behaviors became so challenging last year that we pulled him out of school so he could return to a full time in-home therapy program.

I’m not yet comfortable with the life my son is forced to lead, though I suppose he isn’t forced any more than any of us are forced into our own neurologies. I’m not comfortable with the praises that are automatically given to parents of special needs kids. I’m not comfortable with the scratches and bruises I’ve acquired when Moe becomes frustrated at not being able to communicate his needs. I’m not comfortable with the uncertainty of his future, with the knowledge that my husband and I will never be empty-nesters or with the ongoing fights with school districts, insurance companies and therapy providers to make sure that my son is safe, educated, and treated with respect.

But some transitions happen no matter how hard we fight them. I am no longer a tourist in this foreign country. I know the terminology, able to throw around acronyms with the best of them. I have learned to speak Dutch, as it were. I have become adept at advocating for Moe's needs and have immersed myself in local and online communities of special needs moms, some of whom have autism themselves.

I am no longer trying to cure my son or make him into the “normal” child I expected to have. I wear proudly the title of autism mom, just as I want Moe to grow to be a proud autistic adult.

I am Moe's mom. It is a special role indeed.



12 comments:

  1. This is wonderful!!! I have tears in my eyes.

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  2. Perfectly said Jen, as I read this I realize just how long we've already known each other for. I'm glad I've been able to follow along with your journey with Wesley, he's so lucky to have you.

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  3. An honest and compassionate story. Well done!

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  4. Wow Jenn!!! This has got to be one of my favorite pieces. I'm trying to figure out why I'm crying and I think it's because we are going through the exact "same" transitions here. Griff has had so much trouble staying asleep over the past 7 weeks. We are seeing a child psychiatrist here in the valley who has been an absolute angel. If angels exist, he is surely one!! So we have had three full nights of sleep in a row!!! Yay!! I can talk to you more about how if you're interested. I think I am also crying from relief. I know I am not alone -- but sometimes I feel so lonely. Please keep on blogging. You have helped me in so many many ways. love you and that precious boy and his adorable sister. xoxo

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  5. This was a difficult transition for me as well. I really never liked the "Welcome to Holland" poem because it really didn't encompass what I was going through at the time of diagnosis. Although I worked with special needs kids, especially kids with Autism for years before James was diagnosed and knew of the potential, having someone tell me that my son had Autism was horrible. We are now 6+ years past diagnosis and James has made a lot of progress. He is that success story in a lot of areas. He now just needs a lot of fine tuning and some adjustments that may be life long challenges for him. I don't know if he will go to prom, graduate from college, live away from home independently or even drive a car. I do know that every day with him is still exhausting but in the end, he will be better for all of the energy put into helping him. I am glad that you wrote this because many people will find strength through your words. PEACE

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  6. Beautifully stated!! Your son is so very blessed to have you as his mother! Watch for blessings in your family's life!

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  7. Beautifully stated! You are a very blessed mother… Watch for blessings to continue to come into your life!

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  8. I never did get that "Welcome to Holland" letter.

    Having only just found this post (it's Dec 15, 2013), I hope you'll find my comment. My husband and I have been parenting for almost 30 years - our 27 year old son is "on the spectrum." Back in the day, his formal diagnosis was ADHD with auditory processing issues and an anxiety disorder. We were lucky in the sense that he had early interventions and, because he was red flagging questionable behaviors in nursery school, we asked for and got him identified as "special needs" before he was placed in a kindergarten class.

    Fast forward to 2007/2009 - having graduated from high school in 2005, we had our son tested to find out what services he might be eligible for as a "young adult." That's when the Asperger's Syndrome diagnosis was made. What we started finding out, that year our son graduated from high school, is that the road map that was so easy to follow while he was in school, goes away for those who are deemed to be too "high functioning" to need services. You fly by the seat of your pants sometimes, holding on with a stubborn grit and determination that there can be a "happily ever after," if you don't give up.

    You're a long way from where I am. And, I know in my heart, that by the time your son grows up to be an autistic adult, there will be many clear road maps for your family. As one of those parents out there forging the way for meaningful employment and housing for adults on the spectrum, I promise to leave a trail of bread crumbs behind me.

    More than that, what I want to say to you is embrace the village of support that has already found you. I didn't have that and, it's only now, when I raise my head and look around, that I see so much online about almost every stage of parenting kids with autism.

    PS My son did get to go to one prom.

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