Living the Dream

4

While I was pregnant with my first child—my special needs child, Oliver—I had this little thing I would do every night before going to sleep. It wasn’t exactly a prayer, or even some intentional form of magical thinking…but I would reflect on everything that I wanted for my baby. It was more of a list than a litany, but it still had that rote quality of repetition.

I would add to my list now and again, but for the most part, it didn’t change. I hoped that he’d be kind and generous, funny and handsome. I also wanted him to be earnest, self confident, intelligent, creative. And happy. I dreamed all of this for him and more. Because that is what we do as we sit in the waiting room outside our future as parents. We dream.

And when he was finally born, I couldn’t imagine a more perfect baby. At nine pounds, he was chubby and healthy. And I was terribly offended by the nurses’ exclamations of “Oh, he’s a BIG boy.” There is nothing big about nine pounds. He was tiny and precious, and it was my job to shield him from the dangerous world.

During those early months of taking quiet walks outside and letting him sleep in my arms, this level of protection seemed entirely possible. It’s a brief moment in parenthood that we often forget to treasure as we learn how to function on next to no sleep. It’s the first and last time that we will ever truly be able to stand between our child and…everything. It’s a simple “just you and me” time when the rest of the world disappears. A sweet symbiosis.

Oliver was a very typical baby.

Of course, he had his challenges. Like not sleeping though the night until…EVER. O.K., that’s not true. He got better after the first year, but let me tell you—I can name most of my wrinkles: “Oliver, April 5, 2005,” “Oliver, April 6, 2005,” “Oliver, April 7, 2005….” And he did go through that annoying Daddy’s Boy phase when he preferred my husband to me. Such betrayal. But all in all, he gave me every reason to be a very smug mommy. A few minor details aside, he was everything I dreamed about.

So when did we notice that something was “different?” It’s hard to say since it was all so wrapped up in the craziness of a surprise pregnancy that ended up being twins born 18 months after I had Oliver. Like any “normal” 18-month old, he wasn’t thrilled about two tiny creatures intruding on our perfectly lovely little family of three.

I use the word “creatures” because I got the impression that this is how Oliver viewed them. Even my healthy 5.5-pound twins were pretty scrawny looking. They certainly didn’t resemble any baby Oliver had ever seen before. In fact, I think I can pinpoint the moment when he realized exactly what was going on with these new “pets” of ours. I was changing a six-day-old George’s diaper when I caught Oliver staring intensely at this activity that he must have observed at least ten times a day at daycare. And it was like I knew what he was thinking: “Is that a BABY?!”

I couldn’t blame him, really. I, myself told people that taking care of the twins sometimes felt like playing with Barbies. And that with their little C-section legs curled up all “knee to chin,” it was “like changing kittens.” A very different experience from my chubby first born.

Then time passed. We all survived. Adapted. Became a family. And in the midst of all of that, we discovered that Oliver was not going to be the average, everyday big brother.

Some of my family members were shocked by how our friendly and engaging little guy had suddenly become so closed off and threatened by new people, places and experiences. And as he approached age two, it was obvious that he was not speaking nearly as much as other toddlers his age. People started talking to me about having Oliver tested.

The truth is, all of that really could have been chalked up to the major upheaval in his previously peaceful little life (did I mention that we moved to a new house three weeks before the twins were born?) And I have never been one to obsess over timelines.

I didn’t want to be that competitive mom, pushing her kids to be the best at everything. So his speech wasn’t progressing as quickly as other toddlers I knew…my brother didn’t talk until he was two!

But as Oliver’s second birthday approached and he had months of time to get used to his younger brother and sister, it seemed more possible to me that this might not just be a reaction to change.

Something was wrong. Or wasn’t right. Or wasn’t normal. Or wasn’t “typical”—the PC term that I would soon learn to use when discussing the differences between my child and others. So we had him tested.

It took years before we finally had a handle on what is going on with Oliver.

We got him into a full-time special needs preschool program through our county. We found him a neurologist. Then we consulted a pediatric psychologist who gave him an Autism Spectrum diagnosis (PDD-NOS or Pervasive Developmental Disorder – Not Otherwise Specified), something pivotal to getting him as many services and therapies as possible through the public school system. We sent him to occupational therapy (speech wasn’t covered by our insurance since it wasn’t “restorative”) and enrolled him in a social skills group. That last one ended up being a huge waste of time and money, but I did make a wonderful friend in one of the other mothers there. I like to say that I paid $2,000 for her.

We learned more and more about our son through trial and error. And the only thing I found perfectly clear was that Oliver wasn’t like other kids. My friend, the $2,000 one, has a PDD-NOS boy herself and jokes that it means, “There is something wrong with your child…but we don’t know what is wrong with him.” It’s very frustrating. And so much more common in special needs kids than one would expect. There isn’t a finite label or diagnosis for everything.

Like all other parents in this position, we tried a lot of things, and we learned to accept that there are no easy answers, no single set of directions to follow. We were muddling through like everyone else. Looking for anything that would help Oliver learn how to speak in more than three-word sentences, answering only “yes” or “no” while the other four-year olds were asking “Why?”

And during that time, we were raising a handsome, quirky, delayed boy who was still everything to me that he was as a newborn. Perfect. Mine to protect.

He deserved more than the necessary search for answers and helpful therapies. He had so much to offer us just the way he was. So much to teach. I doubt that there is ANY parent of a special needs child who doesn’t claim to be a kinder, more tolerant person now.

Oliver taught me to take my dismissal of hard and fast developmental timelines to a whole new level. I celebrated every milestone and triumph, and didn’t immediately move on to anticipate the next one. I started living more in the moment and appreciating each day as it came to me.

I watched him play with his younger siblings and enjoy their companionship. It was clear that he thought they were the best friends to be found. He never pushed them aside to follow the older kids in the neighborhood.

He was (and still is) so true to himself. I don’t think I’ve ever seen him express concern over other children not approving of his preferred games and activities. At age six, he still loves Thomas Trains. If other six-year olds think trains are for babies? Fine, more trains for him. As much as he may want to be part of the group, he won’t sell out. But even more importantly, he doesn’t judge anyone else for their own preferred pastimes.

And when Oliver actually does say or do something intentionally funny? It’s like he knows. He looks at me and it’s so clear that he gets it. That he’s different and that it’s O.K. Even kind of great. And we have a moment of looking at the world through the same eyes. And laughing about…all of it. I love that.

These kids know so much more than we realize. By operating on a different frequency than others, they often catch things that the rest don’t. So many times, I’ve been smiling and laughing, and Oliver will look at me with obvious anxiety over the sadness or worry or anger that I’m feeling underneath it all. I’m a pretty good actress if I need to be. But he sees through me. He knows.

One of the greatest gifts I have ever been given is Oliver’s ability to talk to me; to have real conversations. Through a combination of auditory processing therapy and sensory integration therapy (two alternative approaches that we’ve discovered over the past couple of years), Oliver has started really talking. In full sentences. In conversations initiated by HIM.

This may not sound like much, but for us, it is monumental. To be able to talk to your child about their thoughts, feelings, wonder about the world…is basic to building a mature relationship with them. So to hear Oliver express why he’s angry or frustrated is like a miracle. It doesn’t matter if his “feelings” conversations aren’t exactly complex, because for the first time ever, they’re clear.

I love Oliver. He looks at the world in a way that no one else does. He marches to the beat of his own drummer.

It’s so easy to get mired down in the testing and therapies and worries of your special needs child. And to a certain extent you should. It’s your job. But there is also so much opportunity for pure, visceral enjoyment of them.

When I had my baby, I wanted everything for him. And now, six years later, I see that it is he who is giving everything to me. He is every single one of the dreams that I had for him.

He’s handsome and funny, kind and generous. He’s intelligent, self-confident and creative. And so earnest in how much he enjoys his life. He is happy.

I will always try to help him have the best life possible. I’ll dream more for him than could ever be possible. Because that’s what parents do. But I’ll never worry about whether he can realize all of my dreams for him. Because he already has.

Originally posted on Health News HERE.

4 Responses to Living the Dream
  1. Leslie
    November 11, 2011 | 9:45 pm

    So, so beautiful. (And I laughed out loud at the idea that you paid $2,000 for your friend. Adorable.)

    I can’t believe I hadn’t thought of sending my friend with a special needs son to your blog before – I just can’t wait for her to read this article. You said it all. Sure, there is the responsibility to fuss over treatments and get wrapped up in which programs work, but it is just as much a responsibility to just sit, laugh and breathe your baby.

    I hesitate to compare, but all of this is very similar to raising any child – we spend a great deal of time fussing over their care, the disciplining methods and if we’re screwing them up, their schooling (home? public? private?), teaching them to defend themselves without teaching them to start fights, and on and on and on… we really do have to stop and enjoy them. Enjoy them for who they are right now.

  2. K A B L O O E Y
    November 14, 2011 | 2:29 am

    I loved this post. Actually, “post” doesn’t do it justice, since it sounds too dashed off. This is a perfect description of the stages one goes through before, during and after immersion into the world of “special needs.” Like that journey, no one’s story is the same as another’s, but certain truths you mention really resonate. I can definitely say I’m a more patient, tolerant, relaxed mom since entering this community. Right now we’re in the “normal” school world, and I find myself sometimes missing the old world, where differences were the norm. I don’t want my square peg of a girl made to feel bad that she doesn’t fit into a round hole.

  3. heidi
    November 17, 2011 | 7:16 pm

    This is beautiful. And LOVE that you have a 2000 dollar friend – see, money not so wasted after all.
    Really, truly a beautiful post.

  4. CindiS
    April 18, 2012 | 11:31 am

    So, after meeting you the other night at Scary Mommy’s book thing, I am going back and checking out your blog, your writing, your links, your life that you are sharing with the rest of us out here, in the world. And I am so glad that I am. Your writing and your honesty feel “just right” to me and now I will have to find time to follow another blog. (as in…. I’ll be right up, hubs, I just need to read one more thing….)I have a wonderful nephew, W, whose Autism was identified when he was 3. In the past 3 years he has started communicating with us in ways past the scripted/practiced speeches of “hi, how are you? I’m fine” that he learned from therapy. The way, his way that he has found, is to speak through the Peanuts characters. He is Charlie Brown, and my SIL is Lucy. So he may say, “Luuuuuuuuucy, I don’t WANT to eat my mac and cheese.” When in the past, he might have just thrown the bowl. And my brother, (W’s dad) is Linus. So W, might say, “Linus, when can I play Wiiii?” When before he may have just cried. I could go on and on, but I am not a blogger. I just read them, and I will be reading yours from now on.
    ~CindiS (with the purple hair, that used to be blue for Autism Awareness Month.)
    p.s. to my nephew, W, I am Peppermint Patty.

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