This gallery contains 45 photos.
Yes, he's asleep!
Yesterday, a blogger I like, Love that Max, teamed up with her friend Scary Mommy for a great discourse among their collective readers. Love That Max (LTM) is a blog about raising Max, who has cerebral palsy, and Scary Mommy (SM) is about raising kids. They asked their readers to read each other’s concerns and answer each other’s questions.
LTM asked her readers to post comments telling people what they’d like them to know about raising a special needs kid and to go over to SM and address their questions. The comments range from “Stop staring at us” (many have had very negative experiences) to “Look, we all have challenges. My son’s medical issues don’t trump your potty training woes”.
SM encouraged her readers to read the comments on LTM, and asked them to post questions they’ve always wanted to ask special needs parents but have never had the chance to ask. The questions were great. They ranged from “How can I offer help without feeling like a jerk?” and “Do you join support groups?”
We are lucky in that we have never had a negative experience… in public or otherwise. But Max is not in wheel chair and he doesn’t have scars or any outward appearance that anything is wrong. When people realize he can’t really talk, they sometimes ask. And I tell them all about him. (What? Me talk a lot?) I find that the more I talk, the more information I get. I’ve found fabulous practitioners for him just by talking to strangers.
So, since I have so many friends with special needs kids, typical kids, multiple kids, one kid and no kids, I want to know what you have to say. Please comment with what you’d like other people to know or what you want to know from them.
One day last October in the Nashville Airport, I became MomGyver. Yes, I had a little help from Mr. Dyson, but he was merely a cog in my machine.
Near the end of a three-hour layover on our way to California, we decided we better take Max to the bathroom. We had been putting it off, because it is often a fight. (So, really, everything that ensued was our fault.) But I got him to stand up and quickly realized that he was soaked. He NEVER has potty accidents… he holds it like a champ. But he also won’t tell us when he has to go. We were stunned. And we had no extra clothes with us.
So, I took him into the bathroom to at least clean him up, and then plot my next move. I washed him off and rinsed out his underwear with the hopes that I could find a pair of shorts or sweatpants in an airport shop… in THE NEXT 15 MINUTES before we were supposed to board.
Then I saw it. The Dyson hand dryer. If you have never used one of these, hunt one down. It is an amazing piece of engineering. I had used one before, so I knew the power… and that it blows air from two sides. So, in a matter of five minutes, Max had dry underwear. I just stood there with Max, his shirt long enough to cover his parts, and moved his little boxer briefs up and down in the dryer. I even got a couple of “so been there” looks from other women.
OK… he’s covered, but his sweatpants are still wet. And we board in 10 minutes. I delivered him to Cris, and ran to all the nearby stores, but not one had bottoms of any kind. They all had T-shirts and sweatshirts. We can’t possibly be the first family to have this happen! There was a pricy kids’ clothing store, but she only had up to size 4. The lady working there said that there was a Life is Good store, but it was in the next concourse. Ugh! So, I got in line with the Cohen Men feeling slightly defeated. Cris just carried Max on the plane. If anyone noticed, they didn’t even look sideways at us.
We get settled, and right after takeoff, Cris goes to use the restroom, so I asked him to rinse the sweatpants so they won’t smell. Then I realized that the middle seat in front of us was empty. Score! He returned with the wet pants, and I hung them slightly over the seat and aimed all three of our air vents at them… oh, and flipped them half-way through. Damn if we didn’t land in San Diego 3.5 hours later with dry pants. And it’s a good thing, too, because while Max and I waited at the end of the tube for Cris (who was getting the gate-checked stroller), Max channelled the Mayor of San Diego. He said “hi” to literally every person who came off that plane. Even groups of three, he’d shout “hi! hi! hi!” And they all said “hi” back. I so wish I had video of it … it was ridiculously priceless. But I seriously doubt anyone would have thought it was so cute if he’s been standing there sans pants!
In the last couple of years, I’ve gotten into making felted purses and hats. I just love the whole process. You knit something that ends up looking big and unruly. You put it in hot water and you end up with something beautiful. Here is my latest… a felted backpack (pattern by by Black Sheep bags):
Before
After
Max loves the rain, and will get as close to it as he possibly can.
Now, this might not sound like big news, but, trust me, it is.
While delayed, his motor skills are pretty good in some areas. He has no trouble hitting a ball off a tee or making a basket. He mouses like a pro. He can carry several things at once. He can work a spray bottle. But, the hand-eye coordination needed to catch a ball has eluded him. Last night, I tossed one of his favorite balls to him – it is maybe 6″ in diameter – and he caught it! And he did it five more times in a row. Cris and I cheered, and Max just beamed and laughed.
One of the things that happens when you have a special needs child is goal-writing. When you meet with teachers and therapists, everyone comes up with goals they want your child to meet. And it is usually phrased this way: “Max will successfully catch a ball three out of five tries.”
So, the fact that he caught a ball six times in a row is huge.
When I was a teenager, Christie Brinkley and Billy Joel had a daughter and named her Alexa Rae. I LOVED the name and decided that if I ever had a girl, that would be her name. Thankfully, when the time came, Cris liked the name, too, and we decided on Alexa Rose, so as not to be total copycats.
Deciding on a boy’s name, however, was much harder. And we needed one because we were not finding out the sex. I had always loved Noah, but Cris thought Noah Cohen sounded like a Chico Marx joke: “There’s no-a Cohen here.” And so many boy’s names end in “en” or “on”, which we didn’t like with Cohen. We almost decided on Chase, but we couldn’t think of a middle name, and Cris thought Chase Cohen sounded too close to Cris Cohen. One day, I said “How about Max?” He loved it. Maxwell Chase, it would be. But we weren’t telling anyone. Instead, we posted a list of names we were not considering on our refrigerator and asked people to contribute. There were names like Corky, Kiki, April, May and June, Peabo, Butch and, since it was 2001-2002, Osama.
One weekend while I was pregnant we were visiting my mom. A woman from church called and I answered. Her name was Alexa. I had met her a couple of times, but knew her mother, Maxine, well. At the time, Cris wrote a weekly humor column for my hometown paper, and Maxine was his biggest fan. She used to carry his columns in her purse and make her friends, or anyone else she encountered, read them. So, it was a fitting coincidence that we chose a boy’s name that was a derivation of her name.
Anyway, I couldn’t help but tell Alexa our girl’s name choice. She was so excited. It turns out her middle name was also Rose. I pointed out that it was an unusual name. She agreed and told me that while her mom was pregnant, she was reading a book with a feisty female protagonist named Alexa. And since Alexa seemed feisty in utero, she decided it was perfect.
But she had more to say that didn’t seem pertinent at the time, but did later. Alexa had an adult special needs child. Her daughter had Angelman’s Syndrome. She told me not to worry in the event I had a special needs child… that it would enrich our lives in so many ways. I thanked her and kind of put it out of my mind, which is funny because by the time I got pregnant, most of my friends had already had all of their kids — and they all had normal kids. For years, even before I married Cris, I thought “It’s going to be me.” But, at that moment, late in my pregnancy, I didn’t feel that her heartfelt advice applied to me. But, what did I know? I was convinced the baby was a girl. In every baby dream but one, it was a girl. The one dream where I had a boy, the baby looked Middle Eastern. Maybe that was a message… your baby will be a boy and he will be different.
And Alexa was right… having a special needs child is nowhere near the end of the world. And, just like everyone’s kids, he has enriched our lives in countless ways. But, thanks to him, we have a more varied circle of friends that we ever would have imagined.
Suburban Walkabout 