Into the Woods Living Deliberately

just notes from jennyalice

Jennifer Byde Myers

Jennifer Byde Myers
Location
SF Bay Area, California, US
Birthday
February 03
Bio
Jennifer Byde Myers is a writer, editor and parent of a child with autism. She has been writing since 2003 at www.jennyalice.com, chronicling her family’s journey from diagnosis to daily living with her son’s special needs. She is a founder and editor of The Thinking Person’s Guide to Autism. Her writing has been featured at Salon.com, Dandelion, Care.com and in several books including My Baby Rides the Short Bus. Jennifer has been interviewed on NPR, most recently on Forum with Michael Krasny, and is a Parenting.com Must-Read Mom. She lives on the San Francisco peninsula with her supportive husband, two wily children and a dog named Gus. Follow her on Twitter at @jennyalice

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FEBRUARY 8, 2011 7:39PM

The Old Red Barn

Rate: 13 Flag
Grocery shopping this morning,  a mom and her son passed by me in the floral department. She is probably in her 50's because her son looked about 10 years older than mine... and yes, her boy plays for our team: Autism. Right down to the 6 foot 2 inches of young man flapping his hands next to the strawberries and "oooo--Wheeeeing" in the dairy section. I could tell before the stims though, it's amazing how quickly I can spot a child with autism who's in the same part of the spectrum as Jake.

When I see another family with a special needs child, I ALWAYS try to smile, at the child, or the parent, hopefully both, and even though I don't have a badge, a stamp on my forehead or my son with me to prove to her that I understand a little bit about her life, I always hope that a friendly smile will make her feel there is more good than ill-will in this world. I know there are days when I just hope that we can get through one single transaction without a struggle, and knowing that there are compassionate strangers nearby can make all the difference for me. But she wouldn't make eye contact with me, or anyone else for that matter, except her son.

And while I thought it was precious that she spoke to him so clearly, looking directly into his face, in an undistracted and meaningful way, I also found it a little distressing to think that perhaps she has had to block the rest of us out. I felt compelled to go over to her, and make some benign comment about her shoes to initiate a conversation, just to make sure she knew that there are those of us out here, who would help if we could, and know a lot of resources, and could take the cart if things got a little hairy in the parking lot (even though her son was doing an awesome job), and ugh,  I just wanted to take care of her...jeesh. Which then made me feel like a creepy stalker, because maybe she just isn't that social to begin with, but I think what I really wanted to know is this: will I become like her? and will Jake be like her son?

Will I be so over other people staring at us by then that I will stop bothering to make eye contact? Will I look a little more resigned, but braver just the same. Will I look that tired, which is even more tired that I look now? Will my shoulders be that hunched? Will I look like I *really* need a break?

and will my son be pushing the cart? Helping a bit, pausing for a little stim, then back to the cart, not running anyone over, not escaping? Will Jake still be with me, daily, when he's 20? 30? (and will he be that handsome?)

Jake wears a size 6 shoe already (that's an 8 woman's shoe in case you need a little frame of reference.) He is taller and stronger and more like a young man every day. It's getting harder to pretend that he is going to stay a little boy forever when you're shopping for shoes that big. And like so many parents, the future seems so far away right now.

http://www.moore-warner.com/barns.php For awhile things were so hard I couldn't wait for Jake to get older, and grow out of whatever those troubles were. Then he got older and surprise! that age had its own pile of troubles. And certainly we experienced a lot of joy in there too, but it always seemed like a better version of our family was just around the corner. I am trying to be more aware, and happy with exactly where I am at any given time, and now that we've gained some stability (aside from some childcare dilemmas which are offline stories only), I've been been neither looking back or looking forward. We've just sort of been living, and enjoying, which I think is okay as long as I get back to that planning for the future thing, fairly soon. Sniff some flowers, but stay on the trail. And I want to make sure there's a plan for me too; maintaining my friendships, increasing the vegetable intake, getting more sleep.  I don't really want to end up looking like that old red barn we pass on our way to the coast: confident, but beaten down, still in use but possibly not structurally sound anymore.

Of course I went to the grocery store without a shopping list and came home with 8 bags of groceries, and no plan for dinner, so perhaps I'll start with feeding my family before I move on to the rest of my life.

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I wish you and your son courage and everything good. I know this is harder than I can ever know but I know that parents like you and children like your son need all the help and friends they can get. Rated
A very thoughtful piece. There does seem to be some hope for a workable place for many of our special needs kids (as if everyone doesn't have special needs, including you). But first, you are right to try to be kind and connective, even if it isn't always reciprocated. Second, when they become adults, there is a point at which we have a right, and perhaps a responsibility (certainly a choice) to let them go and resume our own lives. We did this. Our friends with the multiply handicapped preemie did this. Our friends with the Down Syndrome daughter did this. Most kids, as they become adults, prefer in some way or another not to live at home with mommy and daddy. You should wind up with a more independent relationship, always loving your son but comfortable in the knowledge that in some way he is an adult too. I'll keep you in my thoughts. R
Love this post. Good job. Rated.
I am a sister of a person who had special needs and for the last 17 years, it was pretty much just the two of us against the world. I am one of those crazy stalker chicks who like you wants to give a fellow traveller a hug, just like I'd like to give you one right now. And smile at your son. And mean it. I used to be mortified when people stared but eventually I genuinely felt sorry that they did not have the experiences that would help them feel at ease and see my brother in all his gloriousness (and he was also a pain in the ass as any brother would be). Take it day by day. Breathe. DO take care of yourself. Sometimes I looked tired and haggard. Love is like that sometimes.
I hope I'm not depressing the hell out of you, but my 50+ brother still lives with my parents (mid-80s). They've been working for the last 10 years to get him into some sort of supported housing. He's on two waiting lists. He's been on them for a long time (over 5 years?). My mother has now lived longer than both of her parents and battled cancer. My father has lived longer than his father by at least 10 years.

As a side point, my parents worked hard on the appearance of normality. My brother doesn't stim in public. My parents used classic behavior mod. Every tantrum was written in a book, my brother got rewards for fewer of them. He now gives rather muted moans when he gets upset.
Too many chemicals in the water. That's it. Its like the romans with the lead pipes. None of this vaccination stuff. We live in a chemical world. I go back to Italy and they have none of these problems.

BTW: you are a cutie pie!
Thank you all for your encouraging comments. I really appreciate your kind words.
Antoinette... it doesn't depress me, in fact, it's probably best for me to continue to see all of the different way families look when their children with disabilities grow in to adults. If myBoy will still live with me as an adult that's fine, but it might make me think about remodeling the downstairs living area before I ever whip myself up a dream kitchen!
Jennifer - oh I did not think it depressed you, not at all! I can tell from the pictures and what you've written you get it. And while it may be best for your son to live with you, I'd encourage you to start now to explore alternatives. My brother loved me, loved coming home every weekend but I learned he really want o eb with his peeps. Everyone is different of course but with the love you have, you'll figure it out!!
Antoinette, my son is just starting to form some stronger friendships at school...it's been the coolest thing to watch, and of course I can already tell that he's had a crush on a girl...
One year ago tomorrow my my ten-year-old cousin passed away. He had a chromosomal condition that, among other things, caused autism. He has been very much on my mind when I stumbled across your article. His name was also Jake.

Thank you for this honest, well written piece. Jake was only with us for a relatively short time, and during his time here he never spoke, but he taught us so much. The feeling you describe of wanting to help in any way hits so close to home. Whenever I see a special needs child I always want to show support in some way to honor my cousin. I feel, at the very least, that I understand a little bit more than the average person how hard things can be with a child that needs more specialized attention. This is such a hard time for my family, but it helps to know there are people like you out there who show empathy and compassion for others. I cherish the time I spent with my Jake. I hope you always do the same with yours.
Jenny-
Thank you so much for writing. I'm so sorry for your family's loss. I cannot imagine the depth of that pain.
For however hard it has ever been, I am so grateful for this life; I have beautiful children, a strong marriage and great family and friends. It would be hard to extricate Autism from the fabric of our life, and I know I have learned some amazing things about myself and others being Jake's mom.
Thanks again for writing in. I wish you and your family all the best.
Jennifer
Thank you for this wonderful piece. My boy also plays for the "A" team and I make it a practice to never think about the future. To focus on today. And yet I know that tomorrow will come and I have no idea what it will look like. So for now, we enjoy every little triumph (no matter how insignificant) and steel ourselves against the world.