Friday, June 28, 2013

Special Needs Blogger Weekend Link-Up: Celebrate your posts!

It's another Special Needs Blogger Weekend Link-Up. Come one, come all!

The idea

Link to a favorite post of the week—yours or someone else's.

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: I'm Changing My Middle Name To Chocolate Ice-Cream

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, June 27, 2013

This Is How I Do It: Meriah Nichols of With A Little Moxie

This is the latest post in the This Is How I Do It series, which features bloggers who have kids with special needs and their best tips for juggling parenthood, special needs and life in general.

Blogger: Meriah Nichols of With A Little Moxie

Her kids: Moxie, 3, who has Down syndrome; Micah, 5; and MacQuinn, 7 months

My biggest secrets to sanity are…
Yoga, running, painting and lithium.

I keep track of my child’s therapy and medical appointments by…
I use the calendar that comes on my iPhone—that way I just tap at the time/date confirmation email and it will add it to the calendar. I also have everything sent to me via email (I’m deaf).

One way I relax (actually really, really relax) is…
I think the only way I relax is with yoga. I think the combination of meditation and burn-my-mind-out exercise and focus is the only thing that actually gets my brain to STOP and let me just BE. And it’s only when that happens can I actually relax on a deep, inner level.

When I get bummed out about something related to my child, one thing that gives me a lift is…
I think my grief over Moxie having Down syndrome was very intense and lasted for well over a year. But when it was over, it was OVER, you know what I mean? I truly don’t get bummed out about anything to do with her anymore (other than the usual, gosh, I wish she’d learn how to do the dishes already!).

But what did help me when I was bummed was the “ Children” poem by Khalil Gibran in The Prophet:

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

I needed to know this, on a gut level. That my experience growing up deaf, with disability, would not be hers. That she is on her own path, has a rich and interesting life ahead of her that is not mine.

If it weren’t for [fill in the blank], I am not sure I would be able to get through the day
My iPhone.

The way my husband and I split up responsibilities for caring for our child is…
We just kind of dive in and do what needs doing. I think the piece we struggle with is caring for ourselves and our relationship—we tend to put the kids first and ourselves last.

The way I deal if strangers stare at my kid or say things is…
People do stare at Moxie and they stare at her a LOT. I think it’s probably because she’s so darn cute and tiny. She is the size of a typically developing 18 month old and yet she’s 3—so people’s eyes tend to pop when they see her climbing up to the HIGHEST slide, yelping with joy as it whips her down and rapidly spits her out onto the wood chips of the playground.

I just shrug for the most part. A lot of the time I can’t hear people when they say something to me, so I do the nod-smile thing (you know, like you do in another country and a bunch of people are saying something to you in another language —you don’t have a clue what they are saying but they seem to have a friendly tone, so you just nod…and smile).

One great therapy technique I recently learned for my child from her therapist is…
Running or walking on sand. It helps strengthen her ankles, legs and walking.

One site I’ve found lots of good ideas on is...
Lifehacker. I love, love, love it!!! It has something for everyone and is chock full of good information.

My favorite recent post is...
Child Safety: 5 Things That Will Help Keep Your Child Safe. I wrote this after Moxie figured out how to unlock and open the back door, slipped down the flight of stairs, under the foot or so at the base of the main gate and was found by strangers trying to cross the large street outside.

I rock because…
I roll!

Wednesday, June 26, 2013

A moment of serious mom bliss

"Girls! Stop fighting!" was a common refrain heard in our house growing up. My sister and I fought a lot over everything from who got the bigger slice of cake to turning out the lights at bedtime (we shared a room and I was a night owl).

At times, my mom seemed to deeply despair when we went at it. I never fully understood why until I had kids of my own, and realized how awful it can be to watch your children do battle.

For me, there's a whole other level of concern involved. I mean, it's good to see the kids acting like typical siblings, assuming they don't permanently disfigure each other. I like that Sabrina doesn't baby Max, and that Max can defend himself. Even from an early age, when he had so much difficulty manipulating his hands, he was amazingly accurate when he'd swipe Sabrina's pacifier out of her mouth.

But it pains me to see Sabrina being mean to him, or just plain ignoring him. It's normal, of course. Yet it's the opposite of what I yearn for: That she'll be kind to him. That she'll help him if he needs it, without prompting from me.

I do not expect Sabrina to care for Max; she's only 8, and I'd never put that responsibility on her still-growing shoulders. Sometimes, sure, I'll ask her to do small things, like picking up something for him if he's having trouble. Or when Max is saying something I don't understand, I'll ask her if she does. But when she does something for him on her own, that's just bliss.

Lately, I've seen spurts of it. She's been helping Max play on the Wii. She printed out Lighting McQueen pictures from the web at his request. This week, though, I saw the most amazing thing yet. We're on vacation at a resort, and we were in a little pool with a waterfall. It was Max's idea to venture in, despite the roaring sound, but then he was too scared to walk through it.

So Sabrina picked Max up and carried him through, both of them cracking up. Me, I laughed and laughed, for a different reason: I was so amazingly happy to see her doing that. And then, feeling brave because his sister had shown him the way, Max walked through all by himself.

Tuesday, June 25, 2013

8 ways pretend play can help kids with special needs

One of my favorite games to play with Max is Monster. It's totally basic: He pretends he is a huge scary monster, and I run away in terror. It's actually trickery on my part, because I am trying to get him to raise his hands up high in the air (not something his muscles are prone to doing) and also articulate words like "I'm going to get you!"

Pretend play can help kids with special needs in all sorts of real-life ways. Few people know this better than Elaine Hall, the dynamic former Los Angeles acting coach who started The Miracle Project in 2004, based on experiences with her son, Neal, who has autism.

The highly-acclaimed theater arts programs it runs in California and New York help kids with special needs express themselves through music, dance, acting, story and writing. Elaine was profiled in the documentary Autism: The Musical and has received honors from Autism Speaks and multiple other entities. There are currently 14 programs in New York and California; last year, CVS Caremark partnered with the non-profit to expand the Miracle Project School Inclusion program to public schools in San Diego and San Jose. With 300 more cities and towns requesting programs, Elaine says, The Miracle Project is gladly accepting donations.

"All children learn through play, and make sense of their world through play," says Elaine. "It develops the imagination and takes the big, loud, wild world and makes it accessible and understandable so a child can have mastery over it, in a small way. As Plato once said, 'Play is serious business.'"

Here's Elaine's wisdom on how play can help enable, empower and entertain our kids, plus some of her favorite games.
Pretend play can help kids get past their fears
Miriam, usually happy and enthusiastic, arrived to a Miracle Project class one day all upset—next day, there was a fire drill in her school, and she was terrified. To ease her fear, we took our class time to discuss what a fire drill was, and pretend play all of the scenarios that may occur with a fire drill like leaving the classroom, standing in line and waiting with others to know it was safe to return.

We also gave Miriam opportunities to express her feelings—terror that it might be a real fire, fear of the loud sound of the fire drill, fears she would get lost leaving her classroom. We acted out each scenario then problem solved each one. To close, we pretend played a "real" fire—this time with Miriam as the firefighter putting out the fire. She Loved having the power to put out the fire. The next week when Miriam came to The Miracle Project, she bounced into class and said, beaming, "We had a fire drill last week and I wasn't scared at all!"  

Pretend play can prep kids for new experiences
It's great to pretend-play going on a long trip or airplane. In my book Now I See the Moon, I describe in detail how we once prepared Neal for a flight: First we looked at picture books and videos about airplanes—today you can look online for pictures of the inside of an airplane, the outside, the security area and so on. We play-acted packing our bags, taking off our shoes when we went through security, sitting on an airplane, buckling our seat belts, placing our hands over our ears for the loud takeoff. We would go on imaginary journeys on our pretend airplane flights. When it was time for Neal to take the actual trip, he knew what to expect and he did great! FYI, some airports now have programs to help kids with special needs help kids "practice" going on an airplane.

Pretend play can help soothe anxiety about doctor and dentist visits 
We use our "Rehearse for Life" program to prepare to go to the dentist. We look at books and videos about dentists. Then we pretend-play being in the waiting room, going into the chair, opening our mouths. If your dentist is amenable, you can also do a series of practice sessions in the office. Neal would go for five minutes, say "hi" to the dentist and look around the waiting room. The dentist would say hello and then we'd leave. We'd come back another time, and the dentist would look into Neal's mouth in the waiting room. A third time, Neal sat down in the dental chair and opened his mouth, and the dentist just looked in. These sessions created positive emotional memories for Neal that became larger than his fears. When it was time for the actual dental exam, Neal walked into the room without fear, sat in the chair, opened his mouth and let the dentist do his thing.

Pretend play can help kids practice emotions
Playing out different emotions—show me a happy face, show me a sad face, show me an excited face—allows the child to know that they have choices in how they are feeling and what they want to express.

Pretend play can encourage movement
Pretend play encourages kids to move their body in ways they may not typically move, and expand their movements. Neal loves the story of The Very Hungry Caterpillar. So we'd each take a blanket, wrap ourselves up in it and roll around on the floor, like we were cocoons. Here's another story: One of my students, Danny, is severely challenged and was in a chair at the time he started. But in class we'd pretend to be animals and do movements across the floor, crawling like a dog, hopping like a bunny, galloping like a horse. In the first couple of months, we'd wheelchair him across. Then we started to carry him. One day, he got out of his wheelchair and on his own scooted across the floor, like a dog! When he started using a walker, we gave him a part as a DJ in a performance, dressing his walker up with a turntable. He started using that walker more than ever, so much so that his teachers at school asked if we could make the turntable part of his walker! Imagery can draw a child out in ways that one foot here, one foot there cannot do.

Pretend play can encourage speaking
Sounds can come out in ways words may not. If you're reading a book to a child, act out the words: for the word "big," for example, exaggerate it as "biiiiiiiiig! and encourage the child's arms to go high. Also, don't just read to kids—stop and ask them to fill in words. When Neal was young and we'd play peek-a-boo, I'd say "peeka!" and Neal would add "boo!"  

Pretend play can build relationships with other kids
I used to work privately with a nine-year-old boy who only wanted to act out The Three Little Pigs. He’d explore the emotions of each pig, how he felt when the house burned down and the power of the wolf. Then we started bringing in other kids to play different roles. He became director and would say "You're the wolf, I'm the piggie whose house is made out of sticks." It created interaction. In time that game evolved into other stories and games, to the point where we were doing a whole time-travel thing together. Pretend play expanded his ability to be age-appropriate in story-telling, creative play and in his social life with other kids his age.

Pretend play can enrich parent-child bonds
When Neal was young, I'd put him on my back and we'd play horsie. He’d ride me and I’d stop and ask "Do you want more?" and he’d sign "more" and we’d laugh and connect. When Neal would flap his hands, instead of saying "hands down" I'd flap with him and suddenly we were birds flying around, connecting. And if he wanted to spin, I'd hold hands and turn it into Ring Around The Rosie. By joining his world and turning it into play, it made a connection between him and me. That's what every parent wants.

Photos courtesy of The Miracle Project

This is one of a series of posts sponsored by CVS Caremark All Kids Can, a commitment to helping children of all abilities be the best they can be. Like them on Facebook!

Monday, June 24, 2013

A super-inspiring film about girls with special needs: Miss You Can Do It

I brought a special guest with me to the screening of Miss You Can Do It, the new HBO documentary about a beauty pageant for girls and young women with disabilities. It airs tonight at 9 PM ET. The lovely Easter Seals people invited us (they service several girls in the movie), and I felt even more excited for my guest to see the movie than I was.

That's because my guest was Sabrina. I wanted her to see the girls in action—girls with cerebral palsy, Down syndrome, autism and other special needs—and the celebration of their abilities.

Abbey Curran, a former Miss Universe Miss Iowa who has cerebral palsy, started the pageant a decade ago to help girls live their dreams—and see the possibilities for their future. As one mom says, "It's a great way to show that everybody has potential, everybody has gifts." The film follows several girls' stories, including Ali's (above, a total scene stealer) and a couple of families who had two children with special needs in the pageant.

At the start of the film, Abbey says "Accomplishment starts with two words: 'I'll try.'" And the empowerment and encouragement just builds up from there. During an interview with the judges, when a shy contestant hid behind her fingers, the judges covered their own faces with their hands and spoke with her that way to make her more comfortable. Abbey hoped that the girls would draw inspiration from each other, too. As she noted at one point, if a child saw another tying her shoes, perhaps she'd think she could also do that.

The girls' excitement leapt off the screen; so did the parents' joy and pride. As mesmerized as I was, I kept glancing at Sabrina; she was just as drawn in. Later, I did a little interview with her to see what she'd absorbed.

So, what did you like about the movie?
The funny little girl named Ali. Do you remember when she said "Did Mommy tell you when I called 911? It's a secret."

What did you think of Abbey?
She was very nice. What does she have?

She has cerebral palsy, like Max does.
But she can talk!

Max can talk, he just talks in his own way. Cerebral palsy affects everyone differently, it depends which part of your brain got hurt. Why do you think Abbey started this pageant?
Because she has disabilities, and because she cares about kids who have disabilities. She wants them to have fun and to have a great time and an awesome life.

Did you see kids like Max in the movie?
Yes, they have the same thing, cerebral palsy. Some of them walked differently, some had trouble talking. Like that girl who read the essay about how she wished people could see her.

What does the movie tell you about kids with disabilities?
That they can do everything! And Max could be in a beauty pageant!

Then I told Sabrina that my friend Janette used to enter beauty pageants when we were in college, and that she got to be in The Miss America pageant.

"Oh, she has special needs?" Sabrina asked.

Loved that.

Image: Screen grab/HBO trailer

Friday, June 21, 2013

Special Needs Blogger Weekend Link-Up: desperately need a break edition

It's another Special Needs Blogger Weekend Link-Up, an excellent reason to take a break from end-of-school-year chaos and, um, read about everyone else's end-of-school-year chaos. And other stuff.

The idea

Link to a favorite post of the week—yours or someone else's.

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: See Ya, School!

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, June 20, 2013

Did a disabled staffer really get treated this way? Really?

I heard Abbey Curran, 25, talk last night after the premiere of Miss You Can Do It. The HBO documentary is named after the nonprofit beauty pageant she started for girls and young women with disabilities, which celebrates its 10th anniversary this year. I'll share more about the movie, which is all sorts of wonderful, on Monday (it airs that evening).

Abbey, a former Miss Iowa 2008 who has cerebral palsy, did a Q&A with journalist/disability advocate John Hockenberry. She shared everything from wanting to be the "Martin Luther King" for people with disability to her desire to create a line of sexy shoes for women with cerebral palsy. And then, John asked her to name an instance when she'd faced intolerance. Abbey paused. From the back of the room a few people who seemingly knew her shouted "Disney! Disney!" And then she told.

Abbey had landed an internship at Disney World, at the Magic Kingdom. It was a dream job, she told us, and she was assigned to work at the Bibbidi Bobbidi Boutique. Abbey wanted to wear black Crocs, the only shoes she could comfortably wear all day (her feet splay out from the CP, and she walks with a pronounced swagger-limp). Abbey said she was informed she couldn't, because the rubber could catch on the floor. Then she said she had to park her car, which she had brought in from Illinois, in an area where she needed to board a shuttle bus to get to the gates of the Magic Kingdom, then walk to work. She joked about it feeling like miles, and John sympathetically said he'd had to do it with two kids.

At some point, according to Abbey, a supervisor had a talk with her about how she was arriving to work "all sweaty," Abbey told us. "She said she didn't know what to do with me." And so, Abbey said, the supervisor asked Abbey to stay in her apartment for the next three weeks of her internship. "I got seven dollars an hour to sit in an apartment," Abbey remarked. Abbey said her "final straw" was the night she decided she wanted to eat dinner at one of the parks. She drove there and tried to valet park. Except, she recounted, she was told that she couldn't use it because she was an employee.

After that, Abbey packed up her stuff and went home.

We are longtime fans of Disney World in our family. We all love it there, and the resort has been incredibly accommodating to Max the two times we've been there; I've heard the same from other parents of kids with special needs. So listening to this was particularly disappointing.

Given the fact that I did not contact Disney for a comment (no investigative journalist am I), take this for what it's worth. As can be the case with these sorts of matters, that supervisor may have been one bad Bibbidi Bobbidi apple sticking too closely to Disney dress code. And parking challenges for people with disabilities happens; Abbey also told of another job where she was informed she had to park in an area four blocks away from her building.

But when a go-getter like Abbey Curran tells a story like this to a roomful of people, ending on "Disney is not magic!", it's a shocker.

Image: Flickr/Loren Javier

Wednesday, June 19, 2013

A genius new auto-injector for allergic reactions and other revelations

If your Cars 2 obsessed child happens to leave his Cars 2 lunch box at the bowling alley where he attended a birthday party over the weekend, and you are not able to pick it up till the following weekend, he will somehow survive. 

Somehow, I always forget that June is the most hectic month of the year, next to December. My brain just keeps thinking that it should be easy. 

There's a new epinephrine injector, the Auvi-Q. It's a bit larger than a credit card and about 1/2 inch thick, so it's easy to tote around; it has voice instructions to guide you through the injection process; and it comes in kid and adult doses. Our pediatrician think it's going to put the Epi-pen out of business. I'm getting three of them, because I am extravagant that way! Er, I need one for home, one for school, one for the car/when we're out and about. 

End-of-year teacher and aide gifts sometimes stump me, but this year I got them little wind chimes with a purple hanging pendant, so they'll also remember Max. [Pats self on back.]

I could easily spend the better part of my life browsing Houzz. At least I have plans for retirement.

That old saying "Always get it in writing" is excellent advice.

It's actually humanly possible to retain all of the pieces for a toy for 10 years. Is there an award for that?

If it weren't for Guerlain Meteorites luminizing powder, some days people might not be sure I am still alive.  

If you are on the commuter train in the quiet car, where people aren't supposed to talk, and the guy sitting next to you is mumbling continuously as he works on his laptop and you say "Excuse me, this is the quiet car" and he says "But I'm talking to myself!" it's best to just move.

If your 8-year-old has been asking for a year to get her ears pierced and you finally give in, you will no longer have any good threats left to make her clean her room or otherwise behave. But she will look very cute.

If your child needs to bulk up, consider feeding him macaroni and cheese pie (what Max calls this recipe made from acorn squash). Max consumes vast quantities of it, and whereas at his annual checkup the doctor was concerned Max was maybe on the puny side, at a follow-up appointment four months later Max had gained TEN pounds and grew an inch and a half. Thank you, macaroni and cheese pie.

It is not a good idea to DVR the season's first episode of True Blood and watch it right before you go to sleep. 

You're never too big of a kid to enjoy the rides at the mall.  

Tuesday, June 18, 2013

How to (mostly) have patience when your child acts up

"In one post (I can't remember which) you mention having endless patience for your child. Really? I struggle with this so much," the email read. "My little girl is 3 1/2 and her more challenging behavior makes me want to scream with frustration. The refusal to eat by herself (even though she can), the fits of screaming in public places when we take her to something we had hoped she would like, the running away when we ask her to come, the constantly taking off her clothes (although I'm obviously proud of her new skill)... small things mostly but frustrating nonetheless. I end up feeling angry and resentful with her and wishing that life were easier, then guilty and wretched for not accepting her as she is. If I don't, who will? Endless patience? I wish! Do you have any advice?"

I instantly: 1) Knew how this mom felt; 2) Realized she must have mistaken my blog for one Mother Teresa used to write, or something like that. I most definitely do not have eternal patience, I told her, and have felt similarly distraught when Max has screechfests or refuses to do stuff I know he can do.

If we're at home, my go-to solution is to put Max in a place where he can lose it safely, like his bedroom, and let him cry or shout it out for a few minutes. Bonus: This gives me time to regroup. If I run out of patience I often let Dave take over, especially if we're in a public situation; he is less emotional about dealing with meltdowns. If we're at a restaurant, for instance, he'll grab Max and head outside.  

We've also learned that timing is everything. Max is most in danger of losing it when he's hungry, so we'll leave the house only when he's well fed—and give him a snack before we hit restaurants, so he's not starving. Headphones have helped with transitions. When Max screeches, I've been known to put them on myself. This has the effect of cracking Max up; distraction can work wonders, though it's not always possible.

Taking care of me helps, too. I try to grab time to relax every week, whether it's girls' night out or having an iced latte in a coffee shop and reading for a half hour. When I recharge, when I have treats to look forward to, I'm better equipped to handle whatever the kids throw my way. A time efficiency expert I once heard at a seminar recommended that on Sundays, you plan something fun for next weekend instead of leaving it to, say, Friday; it helps power you through the week.

Yes, sometimes I wish life were easier. But that comes with the gig of parenting a child with special needs, and it's nothing to feel guilty about. You'd be hard-pressed to find a parent who hasn't wished her child would behave differently—special needs or not.

What tactics help you deal when your child has a meltdown or acts out?

Monday, June 17, 2013

Toys aren't us: Dealing with special needs parent buying compulsion

I did a huge toy purge this weekend—perhaps you heard me screeching "I can't believe how much crap the kids have!!!" as I unearthed yet another game that was missing approximately 97 pieces. 

It's been years since I sorted through the kids' games and toys, and there is a mind-boggling amount of them. This is mostly because of the buying sprees I went on during Max's early years, when I figured the more toys to simulate him, the better. I looked to toys for salvation, hoping they could spark his intellect, encourage him to better use his fingers and hands and even get him to walk.

Toys have most definitely been therapeutic for Max. The Mozart Magic Cube, with its different instruments and bright lights, encouraged Max to reach at a time when it was a real strain for him (cerebral palsy messes with your muscles that way). The Fisher Price Laugh & Learn Fun With Friends Musical Table encouraged him to pull to stand. When he started taking steps but needed support, we'd load up a toy shopping cart with cans to give it weight and he'd walk around the house with it, Dave and I joking that someday Max would make a great personal shopper.

Problem was, I couldn't stop buying toys. Whenever the therapists recommended a toy, I got it, hunting it down on eBay if it was discontinued. If Max's teachers said he took a particular interest in one at school, I got it. If we were at a store and Max took a liking to one, I got it. No occasion necessary; every day was a day worthy of more toys. 

Playing with them and Max wasn't always fun; at times I'd be so anxious for Max to better engage. (Also: Floor time can get really boring. What an awful parent am I!) I'd put stuff in bins so it wouldn't distract Max, but then I'd forget about those toys, and the clutter built up, threatening to take over our kitchen—I'd already converted the dining room to a playroom. 

In recent years, I've gotten better about not over-buying. Experience has taught me that more toys does not equal better kid. And buying educational toys that Max has no interest in does him no good, and wastes money. I still ask therapists for recommendations at birthdays and holidays, and we just have a leetle Cars 2 merchandise problem, but in general we no longer OD on toys. I just never dealt with the pile-up. Now that our basement's done we've socked away a bunch of toys there but still, our house felt like toys gone wild. And so, this weekend, Dave took the kids out and I mercilessly tossed stuff into big trash bags to donate. 

I hesitated the most over Max's fleet of dump trucks and fire engines, because he still loves pushing them back and forth and back and forth, but I chose some favorites and out went the rest. I had no problem getting rid of the bazillion party-bag favors we'd accumulated; those plastic things oughta be illegal because the kids forget all about them the second they are home from the birthday party, they consume space and they are a waste of resources. If you happen to be interested in owning 42 hand-clapper things, though, contact me.

I felt good knowing the toys would go to deserving kids, yet sad because I had such a vested emotional connection to so many of them. The echoes of play and therapy sessions past filled the room as I sorted through everything. I could picture Max trying so hard to hold them and use the toys, and me, Dave, our babysitter and his therapists sitting on the rug, encouraging him. 

"Push it, Max!"
"Touch it there, Max!"
"Use two hands to hold it, Max!"

I'm about three-quarters done and I've filled five huge bags to give away. Sabrina started looking through them last night, complaining that she still needed a bunch of stuff, exactly what she did the last time we had a garage sale. I suspect she may be destined for a starring role in Hoarders (like mother, like daughter) but meanwhile, I reassured her she still had a whole lot of playthings. 

Happily, Max didn't seem to care. I carved out a cubby for him in the wood organizer completely filled with Cars 2 stuff, and he was ecstatic. Play is still plenty therapeutic for him these days; Lighting McQueen is excellent motivation to get him to talk and stretch his arms when he drives him around. Mostly, he just has fun with it—like any kid with any toy. 

Friday, June 14, 2013

Special Needs Blogger Weekend Link-Up: It's addictive!

It's another Special Needs Blogger Weekend Link-Up, almost as addictive as chocolate, Chunky Monkey ice-cream and reality TV. Almost.

The idea

Link to a favorite post of the week—yours or someone else's.

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: Can You Believe I'm Still Obsessed With Purple?

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, June 13, 2013

Special needs dads are so hot when...

Dear Special Needs Dads,

It's not that your muscles aren't impressive or your hair's no longer gloriously thick or your smile any less dazzling than it was when we first met (they are, it is, always will be). It's just that we moms find some other stuff just as hot, sometimes even more so!

You're SO hot when you drive our kids to speech therapy, physical therapy, occupational therapy—really, any therapy.

You're SO hot when you patiently go over letters or numbers or spelling or math with them, again and again and again.

You're SO hot when you help them eat an ice-cream cone or enjoy a Slurpee because they can't yet do it on their own.

You're SO hot when you load photos onto the speech app or help program it.

You're SO hot when you load the dishwasher, too.

You're SO hot when you play T-ball, basketball or catch together, figuring out ways to make it work and make it fun.

You're even MORE hot when our kids finally grasp a ball or the concept behind a game and you get a huge look of pride on your face. 

You're SO hot when you latch up their foot braces.

You're SO hot when you give them a bath. 

You're SO hot when you massage their muscles so they're less stiff, do the ABA exercises, Google information on the Ketogenic diet and toss around sexy phrases like "I'll deal with the insurance company."

You're SO hot when you fall asleep next to them after you read them the bedtime story.

Did we mention you're SO hot when you load the dishwasher?

You're SO hot when you get all demanding at the IEP meeting.

You're SO hot when you remember to give the medication. 

You're SO hot because you do things other dads don't have to without complaining, you don't get to cry to friends the way we moms can but still hold it all together, you (mostly) keep your cool when strangers are rude or places are unaccommodating, you cheer our kids on constantly and tirelessly even if you regularly fall asleep on the couch at 9:30 p.m. and snore as we're trying to watch HGTV but we're not complaining (mostly), you make our kids giggle like nobody else can with your Daddy jokes, you comfort all of us with your big Daddy hugs, and you do whatever possible to enable our kids, empower them and help them have the best life possible.

Love you.

Wednesday, June 12, 2013

More special needs mom fantasies: Stuff that would better my child's life (and mine!)

Aside from harboring fantasies about naps, winning a lottery so we could have a live-in therapist and George Clooney becoming a pediatric neurologist, I regularly dream of equipment in our home that would help Max. Sort of like if George Jetson had a kid with special needs. I'm talking about installing an escalator instead of stairs. A bathtub with mechanical arms to bathe Max. A robot who could dress him, help him drink from a cup at meals and, in her spare time, do all my housework and be my personal trainer.

Last night, I took Max to the pediatrician, which is pretty much the opposite of a fantasy. Not that I don't love this doc, because I do—he is down to earth, realistic yet encouraging and the type of guy you genuinely enjoy talking with. We were visiting because Dr. G had been concerned at Max's annual that he was on the short side. Wouldn't you know it, in the last few months the kid has grown a good inch and packed on 10 pounds (and for that, I have macaroni and cheese with ketchup to thank, although it sure doesn't look as good on me). I was so relieved.

On the way out, Max stopped at a low-lying water fountain. For a good five minutes he pressed the front panel on, slurped, pressed the panel again when he lost his grip, slurped some more, held the panel while I took a drink and, just for fun, pressed it on and off and on and off and....

This was awesome, because Max could drink away without water pouring all over him (as often happens) and because pressing that panel was good flexing of his fingers. And now, I'm fantasizing about having a drinking fountain in our house. Wonder if the insurance company would cover that? BWAHAHAHAHAHAH.

What's on your list of fantasy house stuff that could help your kids? Bet you've got some good ones.

Image: Flickr/ Hamed Saber

Tuesday, June 11, 2013

This Is How I Do It: Scott Price of Glad To Be Your Dad

This is the latest guest post in the This Is How I Do It series, which features bloggers who have kids with special needs and their go-to tips for parent sanity.

Blogger: Scott Price of Glad to be Your Dad 

His kids: Anna, 15, legally blind since 4th grade due to an optic nerve glioma; Jay, 11, who has congenital bilateral sensorineural hearing loss and hears with a cochlear implant.

My three biggest secrets to sanity are…
• Faith that God, the Father, loves my children more than I can and despite what I feel about their disabilities, he knows what he’s doing.
• Periods of creativity, whether focusing on our family business (Sandlapper Soaps), writing for Glad To Be Your Dad or teaching and coaching.
• Piling up in the den with the whole family, watching a movie and eating popcorn—moments when all seems right with the world.

I keep track of my child’s therapy and medical appointments by…
My wife and I use Google Calendar to schedule appointments and activity pickups and drop-offs.

One way I relax (actually really, really relax) is…
Being near big water. I’m too active and pale-skinned to be a beach bum but plant me on a South Carolina tidal marsh with a crab net, a fishing pole, or a pad of paper and pen, and I can stay all day. Also, this will sound goofy but if I can spend a few days at a Disney property, I can relax. I really enjoy the execution of excellence and nobody does excellent customer service like Disney.

When I get bummed out about something related to my child, one thing that gives me a lift is…
Those moments when I can stop being the Character-Molder-in-Chief and just hug my babies. When Anna was diagnosed in with her tumor in the 4th grade, I noticed that I was one of the few fathers that showed up at the cancer clinic. I also noticed that I was one of the fewer still that would go into the back and hang with the kids, my Peeps during their treatments.

My company allowed me to alter my work schedule so I could accompany my daughter to the hospital each Thursday, Anna’s chemotherapy day. Thursday was brain tumor day at the clinic and through Anna’s 18 months of weekly treatment, I got to know a lot of kids and a lot of moms, but not too many dads.

I decided that I would be a dad-figure to any kid there that needed a dad hug. I stopped off each Thursday at a local candy shop and bought bulk candy for the kids in the clinic to wash the taste of the drugs out of their mouths. I became the losing-est checker player in the history of the Palmetto Heath Children’s Hospital, a title I hope to carry to my grave.

I lost too many of my Peeps to cancer and I recognize how very precious a gift I have been given in my own two children. So, in those times I can just love on them, I’m lifted.

If it weren’t for [fill in the blank], I am not sure I would be able to get through the day
You may have noticed that during this tale, I’ve spent much of my writing on Anna’s story, but it was Jay that set us on the path to advocacy.

He was born bilaterally deaf. We learned this the day after he was born. I wheeled him down the hallway from Robin’s recovery room to the newborn hearing testing room. At the time, I worked for a medical device manufacturer and designed cardiac monitoring devices. I got caught up in the science of testing a newborn’s hearing and barely processed the technician’s news that my son failed the test.

We came back to the hospital two weeks later and Jay failed the second screening. He was scheduled a couple of weeks later for a more thorough testing and like the first test, I became enthralled with the science of measuring the hearing ability of a newborn baby. Halfway through the third round of testing, I realized the audiologist was telling me that my son was deaf.

We got digital hearing aids on him at 9 months of age and he kept them until he was two and a half. His hearing continued to deteriorate until he became a candidate for a cochlear implant. I had real misgivings for a time about the technology, which was still new and untested in children. I feared him being shunned by the deaf community but, decided that he could make his own lifestyle choice at the age of majority and while he was in our care, I’d do what it took to give him as much of a mainstreamed life as possible.

Anna was our family champion. Robin and I took and picked up Jay from as many as eight hearing and speech therapy sessions a week during the height of his treatment. Anna read to him, got in his face, talked to him, and would not believe that Jay could not hear every word that she spoke. Every day. All the time.

Jay is now mainstreamed in school and is an A student, in large part due to Anna’s innocent intervention.

In April of 2008, Jay was named the South Carolina Speech, Language and Hearing Association’s Ambassador. Robin and I developed a presentation advocating for early intervention and cochlear implantation of children. We lobbied South Carolina’s General Assembly, we met the governor, and it is the month Anna was diagnosed with her brain tumor.

May not only became Better Hearing and Speech Month, it also became National Brain Tumor Awareness Month, and our story with Anna began.

Sometimes, I don’t know how I get through the day. Sometimes I want to wrestle with God, asking how he could allow this to happen to any child, much less either of my own. Dang, it’s hard. I just have to believe that his knowledge is greater than mine and though this is not the route I would have chosen, it’s the bus I’m on. And I’m going to make the best of it; where I am.

Maybe that seems fatalistic, maybe that seems I’m powerless, but believe me, if I could have flipped a switch for either of my kids, I’d have done so a long time ago.

The way my wife and I split up responsibilities for caring for our children is…
Like in most cases with special kids, the mom, Robin, my wife, is the primary nurturer and caregiver. We have been fortunate that our employers have been very flexible with our work schedules and that Robin has been able to work part-time. Now, it’s mostly splitting time transferring the kids between activities and appointments, IEPs and MRIs. As a friend once said to Robin, “You have a different normal than the rest of us.” So true. Anna is at the age where she qualifies for help from the SC Commission for the Blind, so we’re about to learn about a new new normal. Hopefully she will learn, we will learn the advocacy Jay had been taught.

The way I deal if strangers stare at my kid or say things is…
Education. I’m a teacher at heart. Jay plays travel baseball and wears a “baseball” haircut year-round, his behind-the-ear processor and loop are great conversation pieces. He wears a cochlear implant processor and a loop attached magnetically to his scalp; each device is very obvious unless he’s wearing his batting helmet. Most adults ask if it is the same device Rush Limbaugh uses to hear. I guess Rush is the most prominent celebrity who uses a cochlear implant, though my personal favorite is Heather Whitestone McCallum, Miss America 1995. We met her at a function and yes, forgive me, I’m just a man. 

There was that one convenience store clerk who asked what cell phone company we used. I guess she liked Jay’s “Bluetooth headset." LOL.

Anna stubbornly refuses to admit she’s legally blind. She’ll tell her friends and teachers that she has vision problems but, she refuses to be classified as blind. It is with great difficulty that we can get her to use her white cane or sometimes, her magnification tools at school. As a fifteen-year-old high school freshman, she won’t willingly touch any assistive devices unless we force her to do so in crowded situations like Walt Disney World, a big city like New York or a crowd like a wedding reception. I don’t blame her; at fifteen, I couldn’t ask a girl out on a date without breaking into the hives. I can’t imagine being a fifteen-year-old girl, holding onto a white cane while waiting on Mr. Football to call.

One great therapy technique I recently learned for my kids is…
A-D-V-O-C-A-C-Y in all forms: self, parental and teacher.

One great site I’ve found lots of good ideas on is…
After searching the Interwebs about everything it said about bilateral sensorineural hearing loss, cochlear implant technology, optic nerve glioma and Pilocytic Astrocytomas, I decided to stop researching any term that had more than three syllables. Now, I look to inspirational sites and created one of my own.   

I rock because…
I’m old enough to be my kids’ grandfather. So, I guess I rock because I’m the original Paleo? LOL. Really, I rock because I refuse to let my children be defined by their disabilities—or be limited by being their dad. I can, at the start and close of each day, tell my children, "I'm glad to be your dad."

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