Another Tree in the Woods

"A tree is part of the wood...the woods...a tree is part of the woods...a tree is a part of the woods... a lotta trees..."

I lie in bed with Elias on Sunday afternoon, exhausted after a weekend camping trip to Portage with a bunch of other families with kids. I tell him its rest time and he can't ask me any questions but he can talk to himself if he wants. I close my eyes and listen.

Elias whispers to himself before falling asleep. I've tried to listen to him before outside his bedroom door and have caught him sounding out words, practicing math facts, saying a version of the Pledge of Allegiance: I pledge allegiance to the flag of the United States of America, hello flag, what are you doing there Mr. flag...

"Lots of trees...there's an Ash tree in the garden...that's a silly place for a tree...and weeds...lots of weeds... we don't want weeds in the garden...go away weeds..."

I'm not sure who falls asleep first, but I awake with him curled up besides me breathing deeply. I stare at my perfect "damaged" boy and, like always, I find myself wishing I could be inside his head, just for a moment, to see the world through Elias's eyes.

On Friday, we saw another specialist from Seattle. The C.P. guy who flies up every 6 months to service Alaskan kids with Cerebral Palsy.  I like him. He seems to get Elias instantly, putting into words my Mama knowledge, as if he can read my thoughts, interpret my child, and speak in a simple language not always accessible to those with doctorate degrees.

"Last time you were concerned about Autism," he says, remembering my rarely spoken questions. "My guess is could fall somewhere on the spectrum and could end up with an Asperger's or Autism Spectrum Disorder diagnosis."

There it is.

And the ground didn't swallow me whole.

"I can begin the groundwork with this visit and see him again in six months but if you find you need to move more quickly just give me a call."

For four years now, this has been the shadow I've carried in my breast pocket, pulling out from time to time to discuss with friends, therapists or doctors, only to shove it back in, closer to my heart, when my fears were assuaged or dismissed. So instead of hearing the roar of thunder with his words, I feel a sense of validation-- I'm not just a crazy-making mother creating more imaginary labels for a child already noosed with diagnoses.

I feel believed.

Relief.

And once we get home, a downpour of gut wrenching sobs.

Nick finds me crying in the pantry as I attempt to pack food for our camping trip. "Just take a break," he tells me, understanding my need to climb under the covers and create my own rain.

And I do. I squeeze the comforter as if I could mold it into an alternate reality where Elias arrived full-term, with a midwife by my side, and we never once spent a night wondering if he would live or die. I pound the pillow and cry no, no no.  Not one more! Not one more fucking label for my beautiful boy! My beautiful broken boy! My beautiful boy! Why? Why this too? Why him? Why us? Why me? Why me? This was not in my plans. Why couldn't there be some other explanation for his repetitive questions, focus on small details, lack of empathy and social skills? Why?

And yet, I've known, in my heart I've known. And there is never a good answer for a flood of whys.

I fall asleep and don't dream.

When I wake, we are the same family that we were on Thursday. Elias is the same curious quirky kid who memorized all the roads from the Logan International Airport to my parents house on the Cape. The same kid who loved pointing out dumpsters and and outhouses on our camping trip and wasn't at all phased by the girl who mocked his diaper. The same boy who asked every adult, "Will you go in the woods with me?" and persisted until we all relented, one after the other, following him through the bushes as he smiled and said, "We're in the woods! We're in the woods!"

"It doesn't change anything about how we treat him medically but it can help with services and access to intervention for school and at home," I hear the doctor say.

We are the same family, we just may be joining another club. The Autism Spectrum club.

Why not? Why the hell not?

Just one more tree in the human collage that makes up the woods.

"We went to the woods...we took a long road to the woods...lots of trees together equals the woods..."

 

 

Comments

[niksmom]

Christy, I'm sorry for the additional label and for the angst it causes despite the opportunities for more/different/new services for Elias. We walk the same road with Nik, yet every time we get a new diagnosis the sting is sharp and it's hard to breathe. Sending youlove, peace and understanding of one who is sharing the journey...you are not alone and there are tons of fantastic resources for both information and support from moms in the trenches. They have been my lifeline these last couple of years. xo

[ghkcole]

You would think, as Rooster's mom, that I would know that there is no perfect thing to say to a mom questioning their boy's diagnosis, that there is no right answer or explanation or perfect response to a mom who wonders about her son's possible place on the spectrum. Yet I found myself here almost not commenting because I could not find the "right" words. Well, that didn't turn out to make sense to me at all when I thought about it. When I was asking myself if Rooster would get diagnosed with autism, and when he in fact did get a diagnosis, the single best help I got -- far better than doctors or books or agencies -- was the friendship of other moms. So, I want to tell you that I've been reading your blog a long time. I cherish it. I miss it when you are not posting for a while. I think your kids are adorable. I'd be happy to count you as one of my blog friends, and to help in any way I can if ever you want to talk. You are absolutely right that you are still the same family and still have the same Elias, with our without the label of autism. Your doctor is right that the label can help with resources. And Elias is absolutely right, too. There is a long road into the woods, with lots of trees, and there are friends there who enjoy smiling at the beautiful trees together. I send you a giant hug. Alaska is a little far, or I'd send you a margarita and some Cherry Garcia Ben and Jerry's, too, because that is what friends are for...

[Susan Halvor]

Oh, friend. I wish I had good words. I love Elias, and your family. And if you need a good drink or Ben and Jerry's, let me know!!! I find a lot of hope and strength, deep, rooted breaths and hope of blossoming, in being one of a lot of trees together in the woods. love you guys! Susan

[Ginna]

<3 <3 <3 <3 <3
love love love to all of you
also, the murmurings of Elias to himself sound kind of like poetry to me.
I wish I were there to give you a big hug.
Ginna

[Sara]

Hang in there Christy. You have an awesome team of folks on your side - family, friends (near and online...), AND 'professionals' too. That doctor sounds like a gem...

You know all the pieces - as you say, he's still the perfect gorgeous boy and son he has always been. Greg Walloch's 'cake story' always helps me put it in perspective - 'May I feel like I feel when I'm about to have cake' is just a perfect mantra, plus the part where he says CP isn't even near the top of his list of worries (I am pretty sure I have linked it before - gregwallach.com and The Cake Story - it's on his website and on YouTube).

Mwah dear Christy - Sara

[danielle in zurich]

Oh Christy. Big hug. Big, big hug. Hang in there.

[Courtney]

Christy, I was born prematurely. I weighed about 3 lbs at birth and struggled for awhile, though not nearly as hard as Elias. I had "issues" growing up with schoolwork and socialization, and it was never suggested that it could have been related to prematurity until adulthood. Although I appear "normal" and can function fairly well, I wonder how much better I would be had I had the services to help as a child. I know it hurts, but Elias is so loved and nurtured. What a lucky boy to have you for his Mother!

[Alison]

We don't know each other, but I read your blog because your writing is beautiful, and as a mother of an almost 5 year old, your descriptions of motherhood move me. You talk about the beautiful and the ugly, and I for one appreciate that. And so, I was thinking of you and Elias yesterday as I sat on the commuter train next to a man who looked to be in his late twenties, who used crutches to maneuver quickly off the train when his legs and hands clearly don't work so well, and who sped away to work in his suit leaving me in the dust. He looked to me like he had CP, and he looked to me like a great vision of adulthood with CP. I'm not writing this to minimize the difficulties of getting there - but it was a moment that made me happy, and that like I said, made me think of your family.

All the best,

Alison

[Hairy Farmer Family]

Oh, Christy. I wish I had helpful words. Big hugs to you.

[Liz]

your blog is an inspiration to me as a PT working with kids age 0-5.

you are doing everything elias needs you to do. just keep remembering that--it will always be true, because you are the mom and you and nick know your family's needs best.

[Karolyn]

Hi there. I've been reading for a while now without ever posting, taking quiet comfort in your words and experiences. After reading your most recent entry, I felt compelled to share with you that your blog has become a beacon for me; a light in the wild darkness of my child is "different," my child has "special needs." I don't why: why your son, why now, why you, why me, why my daughter. But if I did, I would share.

Here's what I do know: IT SUCKS, it's not what any of us planned, and you are not alone. Thinking of you and your family and hoping your heart aches less soon.

[Jessica]

(((((((((((((HUGS))))))))))))))))) to you. Like you said it won't change who he is or how you treat him, but another label is no fun.

[Meg]

Hi Christy - I'm sorry about one more thing on the list. Sometimes it feels like the weight is too much. The best thing is that he's still a bright, charming, funny guy who has a niche to fill in your family. The one thing you will find is lots of other parents in Alaska with kids on the spectrum to bounce ideas off of and share in this part of raising Elias. I feel that Casey's personality is so intertwined with his autism and he wouldn't be my boy without it. It's about learning to think of new ways to show learning....because believe me....they are learning and new ways of having people see your son. It's a challenge, but he's the same kid and now you might get some more help with some of his problem behaviors. I'd love for the boys to play together...they seem like two peas in a pod. Casey phrases EVERYTHING as a question!

Meg

[Shelley]

Some answers are really just more questions, aren't they?
Prayers and good vibes for Elias and all.

[Christy]

Even when I don't write for days I check for comments multiple times a day and read your words like dark chocolate, savoring each bite. I love knowing Casey phrases everything as a question too Meg, and that you see his personality entwined with his Autism b/c I was thinking yesterday that there are pieces of Elias's different way of being in the world that I absolutely love and can't imagine him without even as I long for him to be able to "fit in" every now and again. And Karolyn, thanks for letting me know you are out there reading finding hope even amidst the "wild darkness" and understanding at that gut level that it does suck even as we go on because what else could we do? Because maybe one day Elias will be like the man on the train, thank you Alison for taking a moment to write and share this image,its one I will hold onto during the ugly days when beauty is harder to find. Courtney, your perspective as a former preemie without early intervention services reminds me how far the community has come in responding to our tiny babies and I thank you for sharing. Sara I'm off to re-read the Cake Story next, oh wise woman, you and Niksmom and Rooster's Mom, all fellow travelers, your words always help, I know if we lived in the same community we would hang together a lot and cry over wine or icecream and laugh just as hard as we sobbed. Susan, i may take you up on that offer soon and Ginna I know we'll connect one of these missed phone calls, keep trying my friend, and Shelley and Jessica and Liz and HFF and Danielle thank you all for your words of support. Whew, what a community. Love you all!

[Emily]

oh this post was hard to read. Autism, huh? Part of me wants to say, "welcome." But I'm not really a member of the club, I'm an honorary member. I've posted comments before and mentioned I'm a Behavior Analyst (BCaBA), but more than that, I'm someone who deeply LOVES people with autism. By choice I've dedicated my life to understanding them and helping them find their own voice in this crazy world. It's a passion and my clients tell me, it's clear I love my job, they see it in my eyes and hear it in my voice. I read books written by parents with kids on the spectrum in my spare time so I can better understand the reality of having a kid labeled, diagnosed. I spend my days pointing out the positive, giving parents hope, so they don't give up in the exhausting daily struggles. And then I show up and give them a few hour break. But mostly, I just really like people with autism. They seem to "get me" and I seem to "get them" in unique way.

So, I realize services might be hard to come by in AK, and the road is long no matter where you are, but I want to offer my help. If you need someone to talk to, who does "get it" but who also doesn't live it, let me know. I find myself thinking about Elias and his surge of new behaviors, it's recent- he was always "such a sweet boy" in your earlier posts. I'm not sure what that's all about, but it's interesting.. and an atypical profile for ASD. But I know Elias is a far more complicated boy.

At any rate, please feel free to email me and I'll send you my number, if you ever want to talk about autism or therapy options. I'm a behaviorist by trade, but I've also worked closely with people who use Floortime and Sunrise, which are developmental models of treatment. l could literally talk all day long about autism and treatment, like I said, it's sort of my passion. all the best to you and your family-
Emily

[Paige]

I haven't posted in a long time here, but I check in nearly every day, still.

Yesterday I had a great conversation with the oldest son of my Writing Project directors. He's a young adult and he has autism. He does not have Elias's physical issues, but he graduated high school a year or two ago and he's attending university. He and I got on very well and had a very good conversation about reading, our favorite books and how the Summer Institute is going for me.

I don't know what the future holds for your family or for Elias..but as I've said before, he's a lucky guy to have you for his parents, just as you are lucky parents to have him for a son.

[bec]

Oh! The trees in a forest...Like Emily I'm someone who fiercely loves children on the spectrum. I'm a pediatric neuropsychologist with a huge portion of my practice dedicated to working with kids with a spectrum diagnosis. I often talk about the trees and forest with parents when we're talking about their children. These are children who are so exquisitely adept at sensing and appreciating things in their tiniest detail, but to a greater or lesser degree might miss the bigger picture. The old saw missing the forest for the trees. Reading this, I realize that it's equally important to turn this metaphor around. As parents and providers, sometimes we are so focused on the forest, we might be overwhelmed by it's enormity.

In a way, Elias and lots of kids are forests: beautiful, sometimes mysterious, with complex and intertwined parts that make a whole. A diagnosis is just a way to focus in on part of the forest and see one or some of the trees in tighter focus. Like you said, he's still the same quirky wonderful boy you've always known. You've just now had someone also notice some of the trees there that will also need nurturing. But it's all part of a whole, not something new, just a way to parse what's been there all along.

As Alison said above, your descriptions of motherhood move me. You are just the right person to walk through these woods. I know that it is sometimes so hard, but you are a wonderful advocate and an amazing mother, particularly because you see both the forest and the trees. I think I've offered at some point before, but if I can be of any help, I'm always happy to do whatever I can.

[Christy]

Paige, thank you for your kind words, for letting me know you continue to follow our journey, and for sharing a bit about your conversation with this young man. A slice of hope is always welcome here.

Bec and Emily, how lucky am I to have the two of you as readers with your wealth of knowledge and love for children and adults on the spectrum. Bec your words: "These are children who are so exquisitely adept at sensing and appreciating things in their tiniest detail, but to a greater or lesser degree might miss the bigger picture" fit Elias to a tee. I will be emailing both of you when I transition from the manic Alaskan summer state of mind where all I want to do is play in the dirt and forget everything else and return to a more contemplative inside mind. I read both your comments three times and shared pieces with Nick. Thank you again for the work that you do!

[Linda]

Christy, my love to you and your family. Elias is one of my favorite people -- he makes me smile.

Have you read anything by or about Temple Grandin? She's an accomplished and distinctively talented woman with autism. I'm going to look for more information about her, for my own information and understanding.

Your road seems a hard one, but I have confidence in you.

[DiVaughn]

Christy, I've been struggling with what to comment. Evan was also early (32 weeks) and has borderline CP (hypotonic) and an educational classification of Asperger's. But since we don't have a medical diagnosis I can't totally say 'I know how you feel'. And yet, I know how you feel. It sounds like you've already wrapped your head around the first thing that I tell people...Elias isn't any different...your perception of Elias is different. It's just a label, just another name, and in fact gets you into a club FULL of other moms (and the occasional dad) who are totally willing (and maybe moreso than any other group of special-needs parents) to share what they've learned, lift you up when you're down, cheer with you when you're successful, and support you in all things. Sure, it's one more thing, but it's only one more, and like you say, it's not unexpected. People ask us how we do it, as if we have a choice! It sucks that we don't get a choice, but the "why me" doesn't get us very far, so we put on our big girl panties yet again and get to it. Y'all are going to be fine. :)