Posted by: Leigh Reynolds | January 16, 2013

The New Normal

It is a new year, and it’s all new… Again. The last year has been nutty. OK, who am I kidding – life has been nutty. It’s a roller coaster ride, and every time I think we are back at the station and I may be able to get off, I hear the tick-tick-tick of another climb up another hill. It would be easy to get annoyed, tired, frustrated, scared, nauseous… But it is just as easy to think about the thrill of the ride. To revel in the wind in your hair, the blur of another exciting turn, and the shrill scream of  excitement. I choose the latter. Sometimes I have to choose it each and every day, and some days it is easier than others.

But still, I choose it. I choose to claim a life God promised me. I choose to claim joy. I choose amazing.

When a dream falls apart, I choose a new one. When a person I love disappoints, I choose to learn, move on, and push us both on to something better. When I fail myself, or my family, or a friend – miserably – I stubbornly choose to get up and deal with it and work to be better the next time. (I seem to choose the last one more than I care to admit, but hey, who’s counting?!)

I think I have plans, and then I hear God giggle and remind me that His ways are higher. His plans different than mine.

A few years ago, I was embarking on a career path that took me to meetings at the White House (Yea, really. Me. There.) I thought that my lifetime of non-profit had led me to that place, to make a huge splash, to change the face of philanthropy. To be important.  Um, not so much. But I learned so much from that experience – about me, about building something new, about how other organizations work. From that dream, and the path I took when that dream-job died, I learned enough, became brave enough, to embark on my own. But that’s another story, for another day…

Back then, my kids were getting older, more independent, and though I loved them fiercely (still do!) I thought I was entering that new phase of motherhood, where I got a little more of my own life back… Not so! Enter surprise baby number three. By the time Wil was born, I couldn’t imagine life without him. I count him pure joy. I used to hold him at night, and cry, thanking God for being so much wiser than me. I would look into his sleeping face and say, “I can’t believe we almost missed you!”

When Wil was about 5 months old, he came down with horrific eczema. Scary, infected, horrible case, requiring twice daily rub-downs with a strong hormone cream, nightly baths, and a greasing up from neck to toes every night. It is under control now, but still requires a nightly greasing up.

When he turned about 18 months old, Wil stopped talking. He chattered all the time, smiled constantly, played so well… But he quit saying “momma” and “no” and “mine” and the other few words we had thrilled to hear him say. Then I noticed he stopped looking at people at church – people like “Momma Mindi” who was there when he was born and every week since, and Becky who showered him with neck kisses every Wednesday and Sunday at church… It was like they weren’t even there.

People in the nursery would say, “He self-entertains so well. What a happy, sweet baby!” And we’d smile and say, “I know, isn’t he wonderful?!” But I began to wonder… Our wonderful pediatrician suggested a speech and hearing eval, just in case. But in the months we waited to get in, I did more than wait.

I used to have a friend that ran the National Autism Speaks Walk, so I had been to their website – I went back. They have this handy online tool – a simple test you can take that tells you if there is need for further testing. I took it 5, 6, maybe 7 times. Then I found other similar tools and did the same. All came out with the same results – Wil warranted more tests.

The long and short of it is this… After months of waiting, various Dr appointments, enrollment in First Steps for speech delay, more questions, and finally a specialist, we got the answer we already knew. Wil is on the spectrum… he’s autistic.

We are lucky. So very, very blessed. First, he is pure joy. Easy, happy, brilliantly smart, clever, and a host of other wonderful adjectives. He just communicates in a different way, when he chooses to communicate. He transitions well, he almost never gets upset, he doesn’t rock or hit or hide. He’s just blissfully present in his own world. A world full of letters and numbers. On the rare occasion that he gets upset, a little of the alphabet song, or counting to 25 cheers him right up.

Second, I am thankful for the eczema. As he began to retreat, we had a  reason to connect each and every night. I will admit there were many nights I was ‘over it’ and I wanted to skip the routine and just chill out. But if we did, he was red and itchy and sore the next morning, so we sucked it up and made a game of it – singing and laughing our way through another nightly routine. I now believe – I know – that helped him stay connected in his own way and, as the autism crept in and pulled him away, that nightly routine kept him tethered to us in a way many kids on the spectrum are not.

Third, I am forever thankful that I know who and what I know after 20 years in non-profit. I am forever grateful for every parent I ever met that talked to me about being their child’s best advocate. It is because of them that I knew to push, to ask, to ask again, to get to the specialist, to get him help. Now, not later. It is because of them – the mom’s I have served and supported in some small way over the years – that I had the support and help I needed, in their voices, whispering in my memory. And it is because of them that Wil was diagnosed so early and will get so much help to have his best life.

It is strange, to be ‘on the other side’ a little… To be looking into support groups, wearing the awareness bracelet, planning for the walk (not for work, but for my own child), trying to keep all of the medical records straight, make all the Dr and therapy appointments, getting him enrolled in the pre-school for special needs, figuring out how to give him all he needs, while never neglecting the two amazing kids who came before him…

In 20 years of working for non-profits, I always respected and admired the mom’s so much – the team captains, the support group leaders, the advocates, the heroes who give so much for their kids, every day. They have been a force to be reckoned with. Now I am just trying to keep up. To keep the plates spinning. To give Wil – and Jake and Tess – the best.

There are many days, as I sit on the floor with Wil, working just to get eye contact or get him to respond to his name, that I ponder just how different my life is than it was a few years ago. Not thinking about how much I’ve lost – thinking about how much I’ve gained. How much I am learning… though all of this, through Wil.

I am trusting in the Father who has trusted me. Wil is a blessing and a gift, one I am privileged to have entrusted to my care. I am not sure what lies around the corner. I am not sure when the roller coaster will slow down, or if I’ll ever get off. But I am throwing my hands in the air, smiling into the wind, and enjoying the ride.

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Responses

  1. Thank you so much for this post. My son was just diagnosed yesterday, he is 2 and a half. He also used to say little things such as “mama” or “baba” around 10 months but by 13 months they disappeared. He’s still completely nonverbal. But he also seems to be very similar to your son. He doesn’t have a lot of the loud and self harming behavior that kids with more severe autism have, he just seems to be happy in his own little world. He is obsessed with letters, numbers and arranging all his matchbox cars by size and color over and over. I have hope that now that we have an answer, he will talk with the proper therapies and lead a somewhat “normal” life. I know it sounds selfish but I just want to hear “mommy” and “love you” so bad… it’s hard. Thank you for sharing.

    • Joanie, thanks for reading and commenting. Somehow in the business of life I missed your comment and am just now seeing it. But I guess the timing was perfect – I needed to hear it today. It encourages me that this post encouraged you in some way and it’s good to hear from someone who ‘gets it’… I have been longing to hear those same words of late, and I hold out hope that someday in the not too distant future, I will… And I pray that you will too.


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