Friday, August 29, 2014

The Special Needs Blogger Weekend Link-up: Last summer hurrah

It's the Labor Day Weekend link-up, and it'll be here through Monday, for your posting and reading pleasure.

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: The life skill more kids with special needs should learn

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, August 28, 2014

What's that perfume I'm wearing? Eau de Pee

Tap tap. Tap tap. That is how I get woken up these days, a bunch of taps on my shoulder or boobs or whatever body part Max happens to hit. He has to use the bathroom.

This is major. It used to be that sometimes Max wet his bed in the morning, but for the last few months he has stayed dry overnight and when he wakes up, he's gotta go.

He is heading toward being fully potty trained, except for two things. One, he cannot pull his bottoms or undies up and down on his own. And two, when he pees it goes everywhere. Although the same could be said of some fully grown men I know and I am not naming names, nope, not me.

We've been trying to figure out what might help with pants independence. Buttons and zippers are way beyond Max's fine-motor skills at this point. A while ago, I met a woman at a fair who was sewing magnets into pants closures, and one of these days I'll find someone nearby who could help me figure that out. Meanwhile, I'm going to be buying sweatpants one size too big and sew in some loops.

The free-for-all peeing is a whole other story. Like I was saying, fine motor skills are a challenge, so holding does not come into play, hence the spray. That old trick of teaching boys to aim at Cheerios floating around the toilet isn't yet something Max is capable of.  Our bathrooms are on the cozy side, so pee on the floor is just one problem.

Pee has gotten on the walls.
Pee has gotten on the shower curtain.
Pee has gotten on the bathroom vanity.
Pee has gotten on the bathroom rug and floor.
Pee has gotten on the bathroom towels.
Pee has gotten on my work shoes.

Max is entirely too amused by his reach. You know, like a boy.

Once, pee got on the bottom my blouse, only somehow I didn't realize it till I was on the train headed to my office and I thought, Ewww, what's that smell? And I realized it was me. A quick stop at Ann Taylor Loft saved me. Really, parenthood is generally hazardous to your work wardrobe. When the kids were babies, at times I had the distinct scent of Eau de Spit Up. Once, I went to work with a piece of spaghetti on my chest.

I do realize that the free-form spritzing is a relatively good problem to have. I'm grateful for Max's potty progress. And he even puts the toilet seat down when he's done...unlike some fully grown men I know.

Wednesday, August 27, 2014

If it makes you happy

We're vacationing on The Crystal Coast this week, North Carolina's Southern Outer Banks. It's glorious here—the beaches are beaches at their best, untouched and uncrowded. The water's amazingly warm. We're staying in an Emerald Isle Realty rental house with this view from the back deck:

Max has loved jumping into waves and just sitting on the deck and staring out at the ocean. But there's another view he can't take his eyes off of: that of every single fire house we've passed. We've been doing the fire station tour of the area; three down, at least several more to go. Above, the Indian Beach fire department.

Atlantic Beach Fire Department
Emerald Isle Fire Department
Now, everyone has their idea of what a good vacation means. Happily, all four of us love exploring new places. We enjoy staying in hotels and vacation houses. We like hitting new restaurants. Well, mostly; sometimes Max still gets jittery but he's much braver than he used to be. Last night, the kids tried tapas for the first time at Circa 81 in Morehead City. We discovered that Max has a thing for brie, sweet potato quesadillas and chocolate chip cheesecake, and that all of us can eat alarmingly large quantities of small dishes. 

For Sabrina, vacation is playing football or doing cartwheels on the beach. For me, vacation is sleeping late. For Dave, it's a lack of schedules. For Max, vacation means a chance to explore fire stations, and make sure the local firefighters are aware that he plans to be a firefighter when he grows up.

I could bemoan the fact that I (Fireman Max's escort of choice) have to drive to firehouses and trek through them while Dave and Sabrina frolick on the beach. Or I could roll with it. I've done both! Although I'm getting used to the daily fire station trips. Sort of a parallel to parenting a kid with special needs, right? 

The joy on Max's face when he bounds into the fire stations is a trip right there. It's so cool watching him interact with them, trying his best to articulate "I want to be a fireman when I grow up" and saying "WOW!" when gear impresses him. I get to chat with some nice guys about the area and places to visit as Max checks out the trucks, sits inside them and makes new friends.

Once, thrill of all thrills, an alarm went off while he was upstairs checking out some living quarters, and Max shouted "LET'S GO! FIRE!" and made a mad dash down the steps, leading the charge. 

This is his idea of a good time. And now, mine, too. 

Tomorrow morning, though, this firefighter's doing beach patrol. 

Tuesday, August 26, 2014

What got you through the early days of your child's diagnosis? Group therapy

"We have a long way to go in terms of seeing how my son is doing," says the mom of a young child diagnosed with Angelman syndrome. "I've joined some Facebook groups, but have trouble putting my true feelings on display. Those feelings being that I'm a big puddle of sad and confusion lately. I realize I probably need to talk with someone professionally, but I would also love to know what other working parents did/felt/tried to get through the early days. Any advice would be helpful right now."

So many of us have been there. My first year with Max was one big haze of sadness, with occasional bursts of sunshine when I let myself take comfort in his cuteness. 

I was relieved to return to the office after my maternity leave. I've always enjoyed my work as an editor, and I needed to sink my brain into it. I refused to feel guilty for leaving Max at home with a sitter; I knew I'd be a better mother, not worse, if I had the balance of work and motherhood. Our sitter and the Early Intervention therapists shared what happened during the day in a notebook, and I'd occasionally organize conference calls with all the therapists. I was lucky to be able to work from home on Fridays, so I could take Max to aquatic therapy and use the extra hours I saved from commuting on getting house stuff done. 

I found it a relief to occasionally duck out on my own for a few hours, to hang with friends or just  wander the aisles of Target and CVS. I readily accepted offers of help from family of friends to do laundry, bring food over or research stuff that would help Max. And I found it a relief to connect with other parents online and learn about stuff they'd tried, and to look into alternative therapies; assuming whatever control I could in a situation where I generally felt helpless offered relief. I also saw a therapist for a few months. 

What got you through the early days of your child's diagnosis? Share your thoughts and help another mom. 

Monday, August 25, 2014

The life skill more kids with special needs should learn

School officials in Jurupa Valley, California, apologized last week for having Patriot High School students in special ed sort through campus trash bins for recyclables. The activity was part of a functional skills program, which also includes doing a budget, purchasing groceries and cooking meals. Outraged parents condemned administrators for humiliating and stigmatizing students with special needs.

This got me thinking about the life skills Max is learning. At school, he's gotten guidance with feeding, dressing and toileting. His teacher has been wonderful at helping us reinforce manners; Max now regularly says "please" and "thank you," especially if you take him to visit a fire station. But there's one life skill Max isn't picking up at school or at any of the special programs he attends: socializing with so-called typical peers. It isn't happening much at home, either.

This has been on my mind since we returned from family camp, where Max loved hanging out with the siblings of kids with special needs. Really, it's been on my mind for years, and I haven't put as much effort into this as I should mainly because Max has been content with the school and programs with which he's involved and I have, too. Through a Friendship Circle program, 13-year-old twins come to visit with him once a week; they're great, but it's not enough.

Including him in our local public school isn't the best option for him, for various reasons, as much as I'd like it to be. So we're looking into inclusive camps for next summer, along with year-round inclusionary programs. I'm also going to ask around my neighborhood for kids who would be up for hanging out. I've tried variations of this before and nothing has lasted, but it's worth another go.

This would benefit other kids, along with Max. They need to learn how to communicate with kids who have special needs—as in, they need to better understand that in many ways, they are just like they are.

It's good for all children to be exposed to kids of all kinds of abilities. But it's especially key for kids like Max who have been living mostly in a special needs world. It's up to me and Dave to expand his horizons, and prepare him for the real world.

Friday, August 22, 2014

The Special Needs Blogger Weekend Link-up: Read and relax

If you haven't yet gotten your fill of summer (do you ever?) then follow these directions: 1) Get your partner to take the kids out; 2) Grab a cold one; 3) Kick back and read some good posts.

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Let him do it his own way

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, August 21, 2014

Dear schools: Would you please automate the forms already?

Max and Sabrina both attend excellent schools that have one thing in common: Their form systems are stuck in the 1950s. Before the start of every single school year, I fill out piles of student information and health forms.  

Yesterday, I spent my commute to and from work huddled over forms. I'd say that 95 percent of the information I filled out was the same as the previous year. My kids had the same names and addresses! They had the same birth dates! And the same doctors! Their vaccines hadn't changed! Heck, they even had THE SAME PARENTS! 

"Where do you think they store all the forms?" my friend Maryellen asked over lunch, as I complained about the time I've spent writing down information, sending forms to doctors to fill out and then tracking them down when they don't arrive. "Probably in filing cabinets!" she answered herself, and we both laughed. Sadly, she's probably right. 

It's so old school.

The kids' schools are well aware of the invention of computers; each has their own website, where you can get info on classroom activities and upcoming events...and download forms to print and fill out by hand. Both schools are innovative in other ways. So what's up with the paperwork? It's not just the schools in my area; parents I know around the country complain about that annual dreaded ritual, The Filling Out Of The Forms.  

Camps are now enabling parents to complete forms online. It's time for more schools to create online systems where parents can enter information, then refresh any necessary info year to year. Yes, the nurses would have to make sure the systems are secure and compliant with the Family Educational Rights and Privacy Act (FERPA), the school equivalent of HIPAA. And yes, it would take effort and funding to get systems into place.

But then: How much effort would online info ultimately save school staffers? How much quicker could they access it? How many trees would be saved? And how much easier would this make parents' lives, especially ones of kids with special needs who already have just a few responsibilities (and forms!) on their plates? (JUST. A. FEW.) 

After I finally finished Max's forms last night, powered by a glass of Pinot Grigio, I jotted a note to the nurse asking about an online form system; I'll be following up with her, and possibly the principal. I can't recall the last time I wrote a letter instead of an email, come to think of it, but I was in handwriting mode. Ack! The forms are making my brain revert! Next thing you know, I'm going to give up blogging and start writing a diary. 

As you read this, parents somewhere are hunched over their desks or kitchen tables, pen in hand, wearily filling out school forms. Let's send them our sympathy—and press on for computerization.  

Wednesday, August 20, 2014

Still taking shameless advantage of the firefighter obsession

We're at the office of the physiatrist Max sees about once a year. I've brought him here with this promise: "You can tell him you're going to be a firefighter when you grow up!" And it's worked. Max sits patiently in the lobby as I check in, then again in the waiting area.

A nurse calls his name and I stand up.

"No!" says Max. And I ask, "Would you mind calling him Fireman Max?"

Max makes a motion to close the door and for me to sit down, I realize he'd like a total do-over.

"Do you mind starting again?" I ask, only she's already gotten it. This is a nurse at a center for children with special needs.

She closes the door, I sit down. She opens it and says, "Fireman Max."

"YEAH!" says Max, jumping up with a big grin and trotting in to an exam room.

"Max," I say as I remove his foot braces, "why don't you tell her what you want to be when you grow up?" I am trying to distract him from the fact that I am readying him to get on the scale. For whatever reason, he's always had an aversion to standing on it.

"I want to be a fireman when I grow up!" Max tells the nurse, and I explain what he's said.

"Oh, that's good, you want to help people?" she asks.

"YEAH!" says Max.

So I say, "Let's see if you are at a good weight to be a fireman!" and he gets right on the scale. And then, "Let's see if you are at a good height to be a fireman!" And he is.

Then it's time to visit with the doctor.

"Oh, I see you've become a fireman since I last saw you," says Dr. D.

"YEAH! I want to be a fireman when I grow up!"

I translate and Dr. D says "That's great!"

While I'm catching up Dr. D on Max's walking, his ability to climb stairs and how much better his hands have been functioning, I see Max peering intently at Dr. D's computer screen. He is making sure that his records refer to him as Fireman Max, I suspect.

Dr. D hands Max that knee tapper thingie to check his grasp. I mention that Max is now spontaneously using both hands a lot more. Max's left side is the better functioning one; his bilateral stroke was bigger in the right side of the brain. (The left and right parts of the brain control the opposite sides of the body.) Traditionally, his right hand has been the weaker one, more of a "helper" hand. But Dr. D thinks it's coming along.

Next, Dr. D wants to see Max's gait.

"OK, Max, let's pretend you are a fire truck—go! Go fast!" I say. Max dashes out the door and makes his pitch-perfect siren sound as he zooms up and back down the hallway.

Then Max is sitting on the exam table and Dr. D is manipulating his feet, flexing them and pressing them. Max winces, and I wince, too. I hate seeing him hurt.

"Both feet are pretty tight, even the left one," says Dr. D. "I think he's resisting me when I press."

Now Dr. D wants to see Max's gait with the braces, so I put them on again and say, "Max! Let's pretend there's another fire! Go!" Again, he does his siren wail as he runs around.

"His gait is much better when the braces are on," says Dr. D.  They're relatively new, and we decide that we'll come back in four months to see if they've helped stretch his foot out. We are trying to avoid having to do serial casting again.

He shows me a website for a cool rock-climbing gym a colleague has started for kids with disabilities, and the video.

"Max, do you want to try that? Firemen need to learn how to climb."

"NO!" says Fireman Max, who has run out of firefighter patience. He picks up my pocketbook (with both hands, I am psyched to see) and starts to head out the door.

"Hold up, Max, you haven't yet told him about your firefighter boots!" I say. I've promised to buy Max a pair. So Max talks a little about boots and I manage to squeeze in more conversation with Dr. D before Max heads out the door.

I have to stop at the nurses's station and fill out paperwork, only Max is about to leave the area. I spot a fire extinguisher in a case.

"Max, if you just let me take a couple of minutes to fill out the forms, I will take a picture of you with the fire extinguisher!" I say.

He says OK. I finish the forms. I take the picture.

On the way to the car, we pass a little boy and his mom heading into the building. The boy points to Max's hat and says something.

"He also wants to be a firefighter!" his mom translates. "Maybe they can be firefighters together!"

Max is smiling.

"Do you want to drive the truck?" I ask the child.

He nods.

"Then you'd make a great team, because Max wants to sit in the back," I say.

"YEAH!" says Max. He gives the boy a high-five and we head to the car.

I hope his firefighter stage lasts a looooong time.

Tuesday, August 19, 2014

Let him do it his own way

A toy dog arrived in the mail the other day, sent by Hasbro—a FurReal Friends Get Up & Gogo My Walkin' Pup. Max was curious at first but by yesterday afternoon, infatuation had set in and he was walking Maxina (Sabrina's name chose) around the house on a leash. She wags her tail as she walks, sits on command and makes little dog noises. This is both very cute and a welcome diversion from his firefighter obsession. 

Max had been spending quality time with Maxina in his room last night as I worked my computer when he walked into my room carrying a little green bag. It was one of those crinkly diaper bags, a holdover from his days of dirty diapers. I couldn't wait to toss the box of them because it would mean Max was fully potty trained, but now that he's holding out through the night I keep forgetting to throw them away because, life. 

Anyway, in strolled Max with a crinkly bag. He pointed to his butt and said something, and I realized he was telling me that Maxina had made doodie. I started laughing and couldn't stop, and then Max began giggling which always makes me laugh even more. 

"What's so funny?" Sabrina wanted to know, and when I told her she cracked up, too. 

"Max! Let me show you how to pick up the poop!" she said, snatching the bag out of his hand and running into his room. 

"Sabrina," I said, "let Max pick up the poop his own way." Because these are the seemingly ridiculous statements you utter when you are the parent of a kid with special needs but, really, Max needs to figure out how to do stuff on his terms. 

Ignoring me, Sabrina opened the bag. "You want to pick up the poop like this," she explained, making a grabbing motion at the floor, "then turn the bag inside out so you don't touch the poop!"

"Sabrina," I said, "please, let him do this his own way. He has to make it work for him."

I so love that she wants to teach him. Often, Max does need a helping hand, like when it comes to opening boxes, jars or packages, getting something off a shelf or any number of other tasks that require fine- or gross-motor feats that exceed his muscle capacity. When possible, we use adaptive equipment like a special spoon (you might recall my rant about that), foam tubing for pens and a holder that attaches to a cordless phone.

But there are things Max needs to figure out for himself, because his muscles work differently than ours do and showing him the "right" way to do things typically doesn't work for him. Like handling those green little bags, the kind that can be tricky to open even for people who don't have issues with fine-motor skills 

Max walks up the stairs his own way. Max grasps toys his own way. Max holds his fireman hat and puts it on his head in his own way. This is going to be the story for the rest of his life; his cerebral palsy isn't going away and he will forever have to figure out how to best manipulate his hands and limbs. 
This is why it's so important right now to encourage independence, not codependence—which he will happily fall into if we don't push him, as we've seen with his eating. 

Years ago, when Max was about six, I visited his school for a meeting, stopped by his class during lunch time and literally gasped when I saw him sitting at his desk, contentedly spooning rice and beans into his mouth. 

"When did he start feeding himself?" I asked the teacher, because at home me, Dave and our babysitter were feeding him all his meals.

"Oh, he's been doing that for months now," she said. And just like that, we were on to him. 

So, yeah: I wanted Max to figure out a comfortable way to handle a poop bag. 

"Okaaaaaaaay," Sabrina said, reluctantly, and handed the bag back to him.

Max grasped the bag and swiped, effectively pretend smearing the pretend poop all over the floor but, hey, it was a start.  

"It smells!" he said, and I nodded, holding my nose for good effect. 

Max walked over to his garbage can and tossed the bag in. Heck if I was going to notify him that it was going to stink up his whole room. 

Later, I brought him a drink of water and he insisted I give some to Maxina. Then he wanted to make sure Maxina, positioned next to his pillow, had blanket covering her. He evidently wasn't concerned she'd pee on his bed at night.

Pure sweetness. Yet tomorrow will bring more challenges, ones I want Max to rise to. Maybe we'll be giving Maxina some pretend food, and Max will have to figure out a way to handle holding a scoop of pretend food and dump it into a bowl. I don't just want solutions handed to him on a silver platter. I don't always want for to us to be the solution. 

He needs to do it his way. 

Monday, August 18, 2014

Another kind of holy land

Last Wednesday, I headed to family camp with Max for five days. I figured we'd have fun; I had no idea how meaningful our time there would be. It was full of firsts for Max—and the discovery of a whole other kind of holy land.

As a a teen, I was a counselor at two Camp Ramahs in New York and loved it. After I found out that the Ramah in the Poconos had a five-day Tikvah Family Camp for kids with developmental disorders and social learning disorders, I signed us up. (The Ramah Tikvah Network offers family, day and overnight camps at nine locations.) The plan was Max and I would go on Wednesday and Sabrina and Dave would join us on Friday, after she returned from camp, only she liked being home too much to leave again so soon. So Tikvah Mommy and Fireman Max Camp it was.

We arrived just in time for the afternoon petting zoo. Max was into the cow, but was completely enchanted by the goat who pooped pellets in front of him. As the zoo was about to close, Max decided that he wanted a horse ride, and two staffers helped him up.

Fireman Max and his firehorse
All of the staffers were warm and welcoming to everyone in the fifteen families who attended, especially wannabe firefighters. Max got an assigned buddy, Shana, a super-friendly counselor who hung out with him at activities. Our dedicated waiter regularly hooked Max up with assorted pasta dishes. Meanwhile, we had a spacious cabin all to ourselves, impeccably decorated with plaques from bunks past and wads of dried toilet paper stuck to the wood cathedral ceiling. Camp!

A rare photo of Max without the fireman hat. Signed prints available for $5,000,
make checks payable to Fireman Max.
The grounds are hill-y, as camp grounds tend to be, and at first I thought Max would need golf cart rides to get around. He did well walking on his own, but he has a thing for golf carts so he tried to score as many rides as possible. During our first hour there, he slammed his foot on the gas pedal as a counselor had his foot on it and drove the cart right into our cabin's porch. But the broken railing was fixed within minutes, and they allowed Max back on the carts the back seat.

Every morning, there were separate activities for kids with special needs, their siblings and parents, then family stuff in the afternoon. Max did arts and crafts, cooking, music, dancing, story time and swimming. One of his favorite activities: Walking up to the mic when announcements were made after mealtime and telling the crowd, "I want to be a fireman when I grow up!"

Meanwhile, the siblings of kids with special needs did their own activities, which included discussions about what it's like to have a sibling with disabilities. Parents had their own kind of fun; we could take our pick from Zumba, basketball, tennis, boating, archery. I joined Dina of the lovely Commonplace blog for two blogging/creative writing workshops, which also included the proper technique for throwing wads of wet t.p. onto ceilings. OK, not that. I took a bike ride down some back roads with beautiful scenery. I added a square to a group quilt:

Afternoon was family time; we could choose from tennis, volleyball, arts and crafts and swimming. I went boating with Max and Shana; my bad shoulder is still bad, so she did the rowing...until Fireman Max decided to take over.

It was the first time Max had ever rowed before, the first time he ever wanted to. One of the cool things about being Max being in a setting where he felt completely comfortable was that he was game to try new stuff, which included participating in kickball games. The biggest boating challenge: making sure his hat stayed on. 


After kids were tucked in, counselors came to the bunks to babysit so parents could head out for the night's activities. We did an Iron Chef Competition, a trivia game and karaoke; we rocked Borderline, Let's Give 'Em Something To Talk About and Dancing Queen.

While Max sat out Ooey Gooey Stickiness (kids could paint, make Silly Putty, play with shaving cream and otherwise get completely messy), the campfire was a highlight, as befits a firefighter. Max arrived by making his fire engine siren noise, zooming through the crowd and up to the edge of the fire so he could douse it with his pretend hose. He also eagerly participated in the Saturday evening family talent show, with me and Shana; we sang Let It Go and Max did the chorus. The MC had asked people not to clap, at Max's request. So they held up their hands, wiggling their fingers to show their appreciation, and he took a big bow. Max didn't mind the applause he got on the last day at the Paper Plate Awards, however.

Shana gave him the award—wait for it—Most Likely To Be A Fireman When He Grows Up
So, lots of fun happened, the communal kind you have in camp. But there was also a spirituality to our time there. Although Max is not usually one to concentrate during prayers, he was really into the interactive kind they had. He got up and stood at the pulpit, participating in a reading of the Torah, after being called up as Fireman Max. He observed and listened. He offered musical accompaniment.

I had my own spiritual awakening when my iPhone died, and realized that for the sake of my inner peace I needed to unplug more often. We also celebrated the sabbath, a day of rest when you don't drive, turn on electricity or talk on the phone (although Max didn't get the memo about taking a nap). I sat with parents on porches and talked about raising our kids as they played on the grass.

Max made some incredible connections all his own, befriending other kids with special needs and reminding them when they said "Hi, Max!" that his correct name is "Fireman Max." (We have yet to make it legal.) Once, a boy picked up Max's bandana bib. "Don't grab!" his mom said. Only what he wanted to do was dab the drool.

In the evenings, the siblings hung out in a gazebo near the cabins we were in, and Max wanted to be with them. The first night, I sat there trying to be invisible as the kids dug up a time capsule buried beneath the deck and debated what to do with its contents. Max kept saying something until I finally translated: "He's saying 'police' and he wants to make sure you don't get into trouble!" The next evening, Max told me he wanted to be with them by himself. I watched him trek up the hill to sit with them in the twilight, the first time he'd ever hung with a group of kids on his own. I'm sure it felt so good to him. Me, I was thrilled. These are moments you dream of as a parent of a kid with special needs.

After that, Max sat at the siblings table at meals. I was there to help him eat, but again I was invisi-Mom. This was a unique group of kids, ones who didn't think twice about welcoming a kid with special needs because to them they're a natural part of their lives. They included Max in kickball games, too. "My friends!" Max said as we left the gazebo one night.

He really adored June ("Ooon!")
Max held this in his hand the entire car ride home
Max is a friendly kid, but this kind of socializing—the kind that happens naturally at camp, the kind that happens with siblings of kids with special needs—was a whole new experience for him. This is the what I long for Max to have in everyday life: People who get him. Kids who welcome him. An entire world that's welcoming to him. We found it at camp. Obviously it's a special setting, a holy land all its own. As is often the case, it's up to me and Dave to figure out a way to forge opportunities for Max the other 360 days a year in which he'll feel included by so-called typical kids. But Tikvah, which means "hope" in Hebrew, had given me plenty.

We both came home happy and rejuvenated, thankful for a good time...and more.

Rainbow photo: Dina Relles

Friday, August 15, 2014

The Special Needs Blogger Weekend Link-up: What's your share?

The weekly link-up has arrived, and if you can't decide on one post, share two!

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Teaching Your Kid To Be His Own Champion

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, August 14, 2014

That sad you feel when you think about your pregnancy

Dave and I went out for breakfast yesterday morning, an unusual work week treat, and bumped into the woman who lived in our house before we did. We were happy to see each other; we shared a love for our house, and she'd been so warm and welcoming when we were going through the sale. I was a nervous first-time homeowner and hormonal preggo woman; I was five months pregnant with Max when we moved. She'd kindly let me in to take measurements to make sure all our furniture would fit, and given me various pointers about where to buy stuff and good places to eat in the neighborhood.

We talked about the house, and how the beautiful flowers and greenery she'd planted comes up gorgeous every year. We discovered that living in a house was a first for each of us, as we'd both grown up in apartments. We talked our kids. She had four, and it had seemed so extravagant to me at the time that we were going to be a family of three living in a house that had held a family of six. (Of course, then Sabrina came along as did a whole lot of STUFF that has filled every single storage space available, and then some.)

"How is your boy doing?" she asked, looking concerned.

We've bumped into each other over the years, and she knew that Max had a stroke at birth.

"He's doing really, really well," I said. We discussed his school (she'd heard of it), and how Sabrina and her kids, now all grown up, were doing. We agreed that the years zoom by.

We exchanged emails and promised to keep in touch; I told her she or the kids were free to stop by the house anytime. Dave and I ordered at the register, and sat down at at table.

"Isn't it so nice to see her?" I said, and then a wash of emotion overcame me and my eyes filled with tears.

When I see this woman, I think about my pregnancy with Max, and how thrilled and filled with optimism we were—and how we had no clue what would happen to him. It's the same way I feel whenever I glance at a photo hanging in a bulletin board in our kitchen snapped on a day friends came over for our first barbecue at the house. It's similar to how I feel when I look back at Max's birth, before he ended up in the NICU.

We couldn't have known. We couldn't have known. We couldn't have known.

I've accepted that the grief will always be a part of me. And that, rationally, it's out of sync with the reality of my Max—because I can't imagine having any other child, nor would I want any other child. There's no rationalizing grief, though. It's subsided as the years have passed, in terms of the moments happening less often. But when they do, they are just as intense—a shock to my system, something I cannot control. My chest tightens up. The tears rise.

The sadness doesn't hit Dave in the same way, and he's always able to draw me out of it. He brought up the time, after we signed the contract on the house, that we were so excited we drove over at around 11:00 p.m., parked across the street and just stared at it, until the husband looked out a window and spotted our car, and we quickly drove off, giddy house-stalkers that we were. Then we moved onto other topics of conversation, and within minutes, the sadness dissipated. Dave brought over my waffle and his omelette.

I waved to her as we headed out of the restaurant.

Just another moment in special needs parenthood.

Wednesday, August 13, 2014

Time to watch what we say around him

"Ooooh, look at that belly!" Dave jokingly said to Max the other day, after he'd downed a man-size breakfast. Max has put on a few pounds and when he eats a lot, his stomach protrudes. It's partly because the muscles there are slack from the cerebral palsy, but mostly, this boy likes to eat.

Max always laughs when Dave says this, and we've thought nothing twice of teasing him about his food baby. Until the other day, when we stopped by a cafe to grab some afternoon coffee. On the way out, a large guy was seated on a bench. Max walked up to him, gestured at his stomach and said "ig!"

He meant "big!" but there was no mistaking what he'd just said.

Ohhhhhhhhh. M. G.

I thought fast. "He's saying that he wants to be a firefighter when he's big!" I said, completely plausible since Max was wearing his Fireman Max firefighter hat. As Max started to repeat himself, I smiled at the man and hustled Max off.

In the car, we talked about how it was not OK to tell someone their belly was big, because it could hurt their feelings. That people's bellies come in all sizes. And that Daddy and I were just joking with him when we talked about his belly after he ate. Max's social development skills are still emerging, and he (evidently) didn't yet get what's wrong with commenting on someone's size.

It also seems that he's arrived at the stage where if you say something to him, he might unintentionally repeat it in an inappropriate way. Sort of like when Sabrina was little and a friend of the family gave her a doll as a birthday gift that she already owned. "That's OK, we can give it to someone else," I told her. The next time she saw that friend, who asked how she liked the doll, she informed her, "Mommy said we can give the doll to someone else."

Max may not yet be up to speaking in sentences like that, but he can communicate plenty well in other ways. He is definitely up to spelling out all sorts of words on his iPad speech app. Like, "You're bald." (He hasn't. Yet. But if ever decides to add an "insults" tab, I will require therapy.)

I wasn't sure Max completely got what we were saying, but yesterday morning, I knew for sure he didn't. Because he came into my room as I was dressing, looked at my stomach and said "Big!"

Ohhhhhhhhh. M. G.


I explained to him that my stomach had gotten bigger after I had babies. (Explaining my love for cheese would have been too much to get into.) Again, I explained that it wasn't nice to tell people their bellies were big because it could make them feel sad.

He pointed to my stomach, cradled his arms and rocked them back and forth. Read: Do you have a baby in your belly?

This is going to take some time.

Tuesday, August 12, 2014

Teaching your kid to be his own champion

I am so used to advocating for Max in every which way that I've neglected one key thing: encouraging Max to advocate for himself. That occurred to me as I read through The Journey To Life After High School, an incredibly comprehensive report by AbilityPath that's worth reading no matter what your child's age.

The report, out today, gives an overview of life that lies ahead for our kids. It details our children's rights by law, what makes for successful IEPS, employment opportunities after graduation, housing and benefit options and legal decisions to consider, plus resources including a national directory of state agencies and a "What to do and when to do it" list.

There's a section on self-advocacy, too, which is when I had my lightbulb "Better start encouraging more of this with Max" moment. It's going to be a big mind shift for both of us.

"Teaching children to self-advocate is a hard lesson for both parents and children, regardless of whether the child has special needs," notes Michelle Ficcaglia, PhD, BCBA-D, Director of Children's Services at Community Gatepath in California. "Added to this, parents of children with special needs have been in the role of champion and advocate for their child during very tough and critical battles for much of their child's life.... It can be challenging to allow children to advocate for themselves. But starting young means you can teach children to self-advocate gradually. It is easy to find low-risk situations. These small successes will build confidence and comfort with self-advocacy."

Self-advocacy involves six key elements, the report notes:

1. Understanding your disability and being able to explain it through words, pictures or gestures
2. Knowing your rights that are protected by law
3. Speaking up for yourself and your interests
4. Asking for what you need in order to live day-to-day
5. Negotiating on your own behalf so your needs and wants are met
6. Utilizing the resources that are available to you.

This may seem just a wee bit overwhelming, but it boils down to baby steps. The report notes that self-advocacy can start with small tasks, like allowing a child to decide what he wants to wear in the morning or what they'd like to eat for breakfast. Choices help a kid feel empowered. The idea is to help a child feel confident in himself, and in his wants and needs in life. Perhaps there will only be so much a child, teen or adult can ultimately do in terms of self-advocating, but letting him try can help you better understand how far he can go.

I already give Max choices (what to wear, what to eat) but need to work on bigger ones—say, what do you want to do this weekend, where do you want to go for our next vacation. Max sat in on his last IEPhis idea. It ended up being a great thing, and I'm going to encourage this, going forward.

The other afternoon, I sat down with Max and added a button about having cerebral palsy on the About Me page on his speech app. Max knows he has CP, and is comfortable with it. Next up, we'll add a button that lets him explain what it is.

Baby steps, for helping a big kid come into his own.

Monday, August 11, 2014

Firefighters are some of the best people ever

Stereotypes are typically not a good thing, but I've got to say: Firefighters are some of the most warm, welcoming people I have ever met. This I know because we are meeting a whole lot of them lately. Every time our family visits someplace new, we hit the local firehouse. Max insists on it.

This weekend, we did a road trip to Pennsylvania. We passed a fire station in Scranton around 7:15 p.m., and a group of guys were hanging out in front. Dave pulled over and I jumped out with Max; he prefers to do firehouse tours with me.

"I'm Fireman Max!" said Max as he trotted past the entrance toward a fire engine.

"I'm Firefighter George!" said one of the men, following us inside. "How old are you?"

"Eleven!" Max said. Then he told him where he was from, and that he was going to be a fireman—but that he had to be eighteen.

George gave Max the grand tour, showing him the different engines and their compartments. He lifted Max up so he could sit at the wheel. He smiled as Max pretended to slide down the pole and when Max told him that his favorite engine at home is number 31.

My favorite part of every visit is when Max makes the swishing sound that extinguishers make; it's really accurate. America's Got Talent, perhaps?

"I want to be a fireman when I grow up!" Max told him, I translated and George said, "You will be a very good firefighter!"

This is exactly how things have gone every single fire station we have visited: The men (we have yet to meet a lady firefighter) talk with Max, gladly show him around, take care to understand him and encourage him. Over at our local firehouse, every week they let Max write his name on the assignments board.

These guys have significant, serious jobs. I've wondered whether Max's glee about the work they do would ever offend any of them, but they take it in stride. Plenty of kids have a thing for firefighters and to them, Max is just another obsessed kid. I like that, Max being like every other kid.

George apologized that he didn't have any paraphernalia to give Max, and I said that wasn't necessary, unless he happened to have an extra hose. Kidding! I'm getting this Firefighter Hose Backpack for Max for Halloween:

When we headed back out, Max wandered over to the bench where the other firefighters were sitting.

"Hi!" said Max.

"Hi, Max!" they said.

"No!" said Max. "Fireman Max!"

"Hi, Fireman Max!" they said.

Max plopped down on the bench next to a big guy, then patted his belly. We are still working on personal space and he likes to pat people when he wants their attention. The guy grinned at him.

"I want to be a fireman when I grow up!" Max told him, and I translated.

"That's great!" he said. "I wanted to be a fireman when I grew up, and now I am!"

"You still haven't grown up!" one of the other guys said, and they all cracked up.

We hung out for a few more minutes, then it was time to head out.

"Hey, Max, can I have a high-five?" Firefighter John asked. Max obliged, with a round for everyone.

"Bye!" said Max.

"Bye, Fireman Max!" the guys said in unison.

They waved as we drove off. Max had a happy smile on his face and I did, too.

It's so great to feel welcome this way.

Friday, August 8, 2014

The Special Needs Blogger Weekend Link-up: Oh, yeah

Go to it!

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: My Kid With Special Needs Understands You

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, August 7, 2014

In which Max plans a fantasy trip

"Max says he is going away with Dad for 6 days, but I don't know where—he is trying to spell something that starts with an 'f,'" read yesterday's email from Max's teacher. He wrote "frey." She had no idea what he meant.

I started laughing uncontrollably. The word Max was trying to spell was "ferry." The thing was, there's no trip planned—Max has dreamed the whole thing up.

Back in June, our family took the Cape May Ferry in New Jersey to Lewes, Delaware; we were going to Ocean City, Maryland for a few days. A few weeks later, Max started talking about going on the ferry, just with Dave. Then he was talking about going on the ferry and staying at a hotel overnight. Then it was for six nights. Oh, and they were also going to visit some firehouses. And eat a lot of sushi.

I love traveling, and it's been fun hearing about Max planning a trip. (Also: To hear stuff coming out of his mouth that doesn't only have to do with firefighters and fire trucks.) But things are getting a little out of control. Last Sunday, Max announced that he and Dave would be leaving on Monday for their trip. Our sitter is on vacation this week, and I think Max convinced himself that he, too, would have vacation, even though he's in school.

"No, Max, you can't go away tomorrow—you have school," I said, and Max burst into tears. I eventually calmed him down by saying that, yes, he and Dave will go on a ferry ride, but didn't promise when. Then we went off to pack some clothes in his Cars 2 suitcase for the trip. (I fully realize I have enabler issues.)

This is typical of how Max operates; he gets fixated on something, and can think and speak of nothing else. What's unusual is that he currently has two obsessions going at once, although he has nicely integrated them with a ferry-ride jaunt that involves firehouse visits.

I'm not particularly concerned that he told the teacher he's going on a trip. Making up stories for teachers isn't uncommon, as I discovered when I got into a discussion at the office about what Max had done. One coworker told me that when her daughter was in preschool, she informed the teacher that her mother was having a baby sister. My friend found out when the teacher congratulated her on her non-existent pregnancy. Another woman mentioned that as a kid, she'd tell her teacher that her brother could never leave the house or go out in sunlight (not true). 

For now, I'm choosing to be amused...until Max tells his teacher that he's quitting school to travel the world. 

Photo: Flickr/Lil' El

Wednesday, August 6, 2014

My kid with special needs understands you, so don't ask me—ask him

"How old is he?" people ask me.
"Ask him!" I say.

"Which flavor does he want?" the guy at the ice-cream shop asks.
"Ask him!" I say.

"Would he like a balloon?" the lady at the bank asks.
"Ask him!" I say.

It's a phrase I've been repeating a lot lately: Ask him. Ask him. Ask him. Because again and again, people assume that Max is incapable of responding because of his special needs.

I took this in stride when Max was younger. Asking a little kid's mom a question for him is commonplace. But now that Max is a big kid, it gets to me. Max knows what's up. And he is more than able to answer questions, let alone simple ones.

His answers, people can't always understand. Max sometimes doesn't have his speech app handy, which speaks words for him. So I, Max's faithful translator, immediately pipe up:

Yes, do you have a fire truck balloon?

The fact that people presume inability when it comes to Max says something about society's perceptions of people with disability. It's as if his cerebral palsy consumes all of him, rendering him wholly incapable, rather than giving him some challenges.

Of course, I am glad for the times when people want to talk with us, even if they are not speaking to him. People who stare or glare from a distance are rude. Max doesn't notice them, though; it's far harder to ignore the fact that people are speaking over you. It doesn't bother him now, and I hope it never does. How awful would it be if it made him feel inferior? How awful would any of us feel if people we met ignored us?

Technology continues to evolve; last night, I found out about an app at Indiegogo, Talkitt, that translates unintelligible speech into understandable speech. It could be a game-changer for kids and adults with speech impairment.

But I like to think that people can evolve, too.

So here's my ask:

When you meet a kid with disabilities, talk to him, not just his parent. If he doesn't seem up for interacting, back off. If he can't answer with words, don't feel badly. Some children may not speak like so-called typical kids do, but they are communicating. Other children may only be able to respond with their eyes but make no mistake, they are also communicating.

Presume cognition. Presume understanding. Presume ability.

Tuesday, August 5, 2014

A dad sets out to build an inclusive playground, in memory of his son

I first connected with Josh Bauman in 2010; he and his wife, Annette, had found my blog, and wanted to say hi. Their younger son, Kade, had a genetic disorder that caused epilepsy, vision issues and global developmental delays. In June 2011, I featured Josh in Why Dads of Kids With Special Needs Rock. That October, Kade passed away in his sleep. Since then, Josh has gone on to raise money to get an inclusive playground built, in his son's honor. With luck, it should be completed by Spring 2015. Josh answered a few questions:

The ball field where the playground will be built
When did you first come up with the idea for an inclusive playground?
In March of 2011 we went on Kade's wish trip to Disney. We stayed at Give Kids the World and we saw our first accessible playground, Matthew's Boundless Playground. Kade was able to swing on a playground for the first time. Shortly after we returned home I saw a local news story out of St. Louis about Zachary's Playground, the first playground by Unlimited Play Playgrounds. After seeing the story I emailed Executive Director Natalie Blakemore to ask if she was available to start the ball rolling on a project in my area, about 40 miles south of St Louis. She explained that she was busy with a few other projects, but was willing to give me a swing if I could get it installed by my town. 

The family's trip to Disney World
How did you get the ball rolling on the playground? 
Kade passed away before I could get my town to agree to install the swing. About six months after his death, there was an article in our local paper that the City of Herculaneum (a neighboring town) was thinking about contracting with Unlimited Play Playgrounds to build an accessible playground. I found out when the city council would be voting on the contract and we filled their chambers with supporters. I gave a statement to the need of a playground that is accessible to ALL children regardless of ability. We had at least 20 individuals wearing 3e Love shirts in the chambers, we were a force to be reckoned with! During that meeting, the Herculaneum City Council voted unanimously to approve the contract and to start the process of designing and fundraising. Shortly thereafter the city asked that I help them with logistics, design and fundraising. The city held a kickoff party to officially start fundraising and to unveil the first design, and it was during that party that they unveiled the name of the playground, Kade's Playground. 

How did you fundraise? 
My only fundraising experience was selling candy bars and magazines for school fundraisers. Thankfully the Unlimited Play team is skilled at fundraising and between trivia nights, raffles and dinners, we raised just over $350,000. Unlimited Play took the lead during "official" meetings with local businesses. They also organized our kickoff event and secured our first major donors. The surrounding communities and school organizations stepped up and had fundraisers for this project as well. Several local schools did penny wars between classrooms; it is amazing when a school brings several hundred of dollars in change. We also held a raffle for an iPad. A local beautician school held a haircut-a-thon, and donated the fees they charged. The owner of our local Diary Queen held a dollar pin-up program in the three local DQ's. The most unique event we held was a "Cupcake 5k" where runners ate a cupcake every 1/4 mile to shave time off their run, sponsored by a local gourmet cupcake shop. Tracy, the owner of the cupcake shop, raised more than $6,000 during that event! 

What are some key things you've learned about fundraising?
Asking people for money can be a tricky situation. When soliciting I try to make it clear that my feelings would not be hurt if someone is not willing to donate. You never know where your next donation will come from. We have had kids sell lemonade and donate their profits, and some have donated profits from yard-sales. When approaching a business it is important to tell the story of why a playground like this is needed in our area. Most of our business solicitations happened during weekday business hours. I would typically meet the Mayor and reps from Unlimited Play, then we would meet with the business for an hour or so, or even meet over lunch. Jackson, our older son, attends school with several local business owner's kids, so the connection was easy to make at times. Never underestimate the power of a conversation between parents on the soccer field sidelines. It continues to amaze me when we get a message on Facebook from a person who has read about the playground online or in the paper and would like to make a donation. Thankfully social media is a great tool for spreading the word about this project. We have followers from as far away as Ohio, Mississippi and Washington State.

You just won a $350,000 local grant—how did that happen?
Our local hospital was sold to Mercy Health Systems, and the proceeds of that transaction were deposited into a foundation trust. The Jefferson Memorial County Foundation has committed to providing grants to health initiatives in our county. Unlimited Play applied on our behalf, and we were awarded the maximum grant amount of $350,000.

Has working on Kade's Playground been helpful to you in healing?
It has been an interesting journey. At times we know he is present and has a hand in some of the happenings. A friend of mine told me, "I really admire you, you are building a pond for other people to sail their sailboats, and you don't own a boat." That statement really caught me off guard, I had never thought of it like that. Yes, it would have been great for Kade to play on this playground, but Annette and I get the satisfaction that kids with disabilities won't have to sit on the sideline any longer.  While it does hurt, there is great satisfaction to see this project move forward the way it is. 

You mentioned that you're on to the next great project already, Swing With Me. What's that all about? 
Unlimited Play has started a new program for cities, organizations, or schools to install accessible swings in existing playgrounds. They are also offering grants to offset some of the cost. The total cost of Kade's Playground will be more than a million, and not every city can afford that. They are calling it "Swing With Me" and the page has a paragraph "Our inspiration," which is about Kade. Annette and I are very proud that our original goal of just installing a swing in our local playground has turned into a initiative that could very easily spread across the country! If someone is interested they can mention this idea to their local parks board, city council, or mayor. You can find more information at Unlimited Play.

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