Ryan. Aka "Captain Awesome."
Meredith is in Holland.
The young mother actually lives in an apartment in Westchester, NY with her husband and her son Ryan. But her metaphysical arrival in Holland occurred when Ryan was just two.
“I was struck by the fact that all of his friends were really advanced talkers,” Meredith says. “Ryan had individual words at the same time as his friends, but they were all forming sentences. I thought they were just really advanced.” Meredith asked her son’s teachers whether he should be tested. “I was expecting them to say, ‘Oh no no no.’ It was the way they looked at each other (when I asked), I thought, oh crap I shouldn’t have asked. But of course I am really glad I asked.”
Ryan’s testing revealed speech and social delays. The specialists advised that he be moved to an exclusion school.
“I asked if they could just send speech therapists into his (regular) school. I didn’t know that that wouldn’t be enough for him.” Because he was her first child, and because she did not know that he didn’t talk when she wasn’t around, Meredith did not understand initially how different Ryan was from his peers.
“(Schools) don’t use words like ‘autism’ unless you use them first,” she says. “I think they don’t like to freak people out unnecessarily. I didn’t realize how classic a case of PDD he really is. They clearly did.”
Eventually, Meredith understood.
“I went into mourning for a period of time,” she says. “Mostly because it was something so completely alien to me. You are struck by the need to change not only how you think of your child, but how you think of yourself and your child’s future and learning what is a reasonable expectation and what is not. “
This is when Meredith arrived in Holland.
“Welcome to Holland” is an essay written in 1987 by Emily Perl Kingsley, a mother trying to describe the experience of learning that her child was disabled. She likened it to planning a trip to Italy, reading books for Italy, learning Italian – only to open the door of the plane and find she is in Holland.
It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills … and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
Meredith says that a lot of the adjustment to Holland has to do with grieving the loss of what she thought her life was going to be like.
“I get jealous of neurotypical kids because that’s the kind of kid I was ‘supposed to’ bring home and that kid doesn’t live here,” Meredith says. Ryan’s uniqueness is most obvious in public with other children, and it makes her worry about his place in the world.
“Seeing all the other kids in line and realizing how difficult it is for Ryan to know what to do standing in line makes us see that we’re different. You want your kid to stand out because he is exceptional at XYZ but you don’t want them looking at him like why can’t he stay there patiently and wait like other kids? It gets very anxious-making looking at growth charts, milestone charts – this is what your kid is supposed to be doing right now. That is not meaningful to me, it doesn’t apply to Ryan.”
Meredith has been forced to take an inventory of her expectations. “I can still reasonably expect that Ryan is going to do academically well in school. Is it reasonable to expect he is going to be popular and have lots of friends? -I think just because of who I am and who my husband is he’s going to get bullied a lot, just because we were.”
And this is what I like so much about Meredith – through her writing and in our conversation runs a thread of simplicity and honesty. There are no sugary moments in her blog, no vapid smiles and absolutely no platitudes.
“Now when I have my freak out moments, they’re more wistful than abject despair,” she says. “There haven’t been that many presidents in the United States and most people go their whole lives without being famous or more than just an extra. Ryan is a very happy kid, he brings a good time with him. The things that he finds a good time I don’t necessarily understand, but I can’t knock that he’s laughing like a maniac. Who who am I to say that reciting Chicka Chicka Boom Boom is not a good time?”
“Ryan is being the best Ryan he can be, I need to figure out how to be the best parent for his particular kind of kid to be. “
Meredith is acquiring a particular way of looking at the bright side, one that she inherited and has adapted to life as the mother of a special needs child.
“I have a girlfriend whose kids have horrible food allergies. One of her sons is allergic to 12 to 15 common foods, her other son has different allergies, so she has to balance this. And I think, wow, all I have to do is cut out wheat. I’m really lucky. But at the same time I have to cut out wheat. What a pain in the ass.”
“It’s not a competition of suffering,” Meredith says. “Both situations are challenging and it’s okay to accept ‘I’m having trouble’ even if other people are having more trouble.
“There’s a teenager in my neighborhood that has tubular sclerosis and he’s going to be in diapers the rest of his life, and he may live a life that’s meaningful to him but not one that I recognize as desirable. Ryan will be able to live a life that I consider desirable. I have no doubt that Ryan is going to eventually mainstream and be a functional member of society.”
Much of Meredith’s coping skills were inspired by her great Aunt Yetta.
“She was an adorable, tiny little woman,” Meredith says. Before a planned trip to Las Vegas, Yetta broke her arm. She decided to go anyway.
“She thought, ‘ I could have a broken arm at home or a broken arm in Vegas.’ Her friend hit the jackpot, they were being driven around having a great time. It’s a great way to look at things. You could be miserable looking at things or miserable having a good time.”
One of the unexpected challenges of life with a special needs child is the way Meredith struggles in the culture of neurotypical children. The societal judgment all parents face for Meredith and Ryan takes on special significance.
Often, Ryan’s behavior is unfairly judged by people who don’t understand how hard he’s working.
“I would like parents to really understand that this situation that they’re seeing is a moment, they’re not seeing how we got there,” Meredith says. “If my kid pushes another kid, it may be because that kid got into my kid’s space and my kid didn’t know to deal with it. I feel bad that a kid gets pushed, but I have to deal with what’s going on in his head that’s making him push somebody. I will ask if you’re kid’s okay, but you should also not lecture me that my kid is a bully and that am not taking care of him. I want people to be empathetic and I don’t see why it’s so damned hard for people to see that we’re all trying to do what’s best for our kids.”
“I wish every school had an inclusion committee. I wish that special ed didn’t have to come with a stigma. That was certainly how I thought of the special ed kids when I was in school. It’s the ‘R’ word. I think when kids throw that word around it’s hurtful and it’s a sign that they don’t have empathy for special ed kids.
“Ryan is not stupid, Ryan is really smart. He may not have the conversation skills that other four years olds have. There are great benefits to having a mind that works differently.”
One of Meredith’s favorite illustrations of how her son is different is Mom-NOS’s essay ”A hair-dryer kid in a toaster-brained world.” This essay quickly became a favorite for me, too. It speaks to the core of what we parents should be trying to create in our children’s communities — a world that recognizes and has no fear of difference and appreciates each child as a unique gift.
So I ask Meredith – “What’s the best thing parents of neurotypical children can do to help include Ryan and his way of being?”
“Have frank conversations with your children,” she answers. Meredith’s wish for her son is a world in which parents work to teach their children that neurotypical is not the only right kind of kid to be. “The parents are the biggest influence on how their kids are going to treat my kid. I wish all parents of typical kids would teach their children the many different ways there are of being.”
Check out Meredith’s blog at The Ryan Files.
Meredith is also a talented quilter.
This is a crib-sized quilt, hand-made by Meredith, with gorgeous fall colors. We’re auctioning it here at damomma.com. If you are interested, drop me an e-mail with a bid and I’ll pass along the highest bid to Meredith. Winner gets the quilt, and an autographed book from me, along with our thanks. The proceeds will go toward Westchester Arc, and our dreams of a world that celebrates the joy of many different ways of being.
What’s with all the cups in the freezer?
To celebrate my sixth year of blogging, the extremely talented Miss Kimi, the designer of my fabulous cartoon banners, sent along six gorgeous ripe peaches from the farm at which she works in Brentwood, California. While I read Kimi’s note the girls — fresh from painting the club house — stuck their fat fists in the box and helped themselves. Six peaches were gone inside of thirty minutes with no evidence of them remaining except sticky faces and fingers and a pile of peach pits they plan to plant in all hopes for next season. (I did get one bite — sweet and golden. And they’re organic, folks. Wow!)
personalized jewelry in a variety of metals and stones and each piece is made to order. You can lose hours playing around with their design options.
In celebration of Year Four, DaMomma.com is offering one special Tilty-Floored Farmhouse care package. It includes a bottle of lime fizzy water, gummy bears, an autographed copy of my book personalized for you, a pressed blossom from the spidery tree and a copy of View From the Top – the movie I was watching the night the fever finally broke.
$25 gift certificate good at any b. good location. That should be enough to feed yourself and your kids burgers and fries and maybe one of those mango shakes Eden is so addicted to. 
