Cruel Summer: Why Some Kids With Disabilities Can’t Use The Pool

May 22, 2012 at 7:12 am , by Ellen Seidman

It’s the kind of news that seriously ticks you off when you have a child with special needs, but it’s the kind of news that should perturb anyone with a heart.

By March 15, hotels and city recreation centers with public pools and spas were supposed to install or order permanent lifts, or get pool ramps, to make them accessible to kids and adults with special needs; the lifts allow them to transfer from wheelchairs into the water. This accessibility is in compliance with the Americans with Disabilities Act (ADA). The deadline got extended by two months as the hotel industry and Congressional reps resisted. And now, hotels and places with public pools have until January 31, 2013 to comply.

This means we’re headed into one more summer that countless kids and adults around the country won’t be able to use their local pools. One more summer when parents will struggle to carry their child with disabilities into the pool because there is no other way, or give up and not go at all.

According to an article in the Los Angeles Times, pool manufacturers say the law applies to about 256,000 pools and spas around the country; only a small percentage, they estimate, are equipped with lifts. Even more mind-boggling is the resistance the accessibility legislation triggered. The American Hotel & Lodging Association urged members to push for a delay in enforcing the ADA at pools. Meanwhile, on March 14 South Carolina Republican Senators Jim DeMint and Lindsey Graham introduced a bill to inherently prevent the ADA from being enforced at public pools and spas. On March 16, Rep. David Schweikert (R-AZ) backed a similar bill.

What were they thinking? Well, as DeMint explained it, the enforcement of accessibility “could lead to increased litigation and heavy fines that could force pools to close or raise fees on families.” His proposal: “Pools with public access should have the flexibility to work directly with people with disabilities to accommodate their needs.”

I’d like to see Senator DeMint stand in front of a child with disabilities and tell him that, sorry, he can’t use his local pool because of concerns about lawsuits.

Of course, it’s important that hotels and rec centers get the right accessibility equipment and have a general plan in place before they comply. But how is it even possible there are any places left that haven’t gotten around to doing this, let alone major hotel chains? As for the hotel industry’s concern that permanent lifts could pose a safety hazard to children tempted to play with them, the fact is, pools are generally dangerous places for kids. Which is why you are not supposed to leave them unattended.

Surely hotels could figure out a way to make sure kids don’t use permanent lifts as pool jungle gyms. Surely hotels should get a grip and realize that kids and adults with disabilities deserves fair access to its amenities. Swimming is not a luxury; every child and adult deserves the right to enjoy this summer pleasure.

This spring, my town installed handicap-access ramps in our public pool, including one descending right into it. Progress? Yes. Overdue? Very much so. On July 26 1990, President George H.W. Bush signed the ADA into law. Two years ago, the ADA was amended to include pool accessibility. And now we’re here in 2012  and kids and adults with disabilities are still being denied access to pools. For shame.

 

Photo of father holding his son with disabilities in a pool via Shutterstock

7 ways family trips help kids with special needs (and their parents)

May 18, 2012 at 7:10 am , by Ellen Seidman

Some of my fondest memories involve trips with my parents: Our first venture to Disney World, car rides to the Vermont countryside and, when I was in college, a  jaunt to that land of wholesome-ness know as Las Vegas. Now that I have kids, I want to give them those kinds of memories (er, minus the slot machines). I also want to expose them to as many new sights and experiences as possible, especially Max. He has cerebral palsy and cognitive impairment, and a long time ago our beloved pediatric neurologist told us to expose him to as much as we could to help nurture his brain. Traveling for us isn’t just fun—it’s therapy. With housekeeping service!

We recently spent spring break in Scottsdale, Arizona, rated one of the best warm-weather family adventure destinations in the country by Travel & Leisure. It was a blast—and a game-changing trip for Max, in many ways. Some of the ways I’ve found trips to be an amazing thing for him:

1. Travel makes learning extra-fun. Count the Cacti became a favorite car game as we cruised through stretches of Arizona desert.

Max learning about pythons at the amazing Out of Africa Wildlife Park in Camp Verde

2. Travel gives kids opportunities to not be themselves.  Max is usually scared of loud music; he’s never been to a concert. But he did venture into the lounge at our hotel, the Hyatt Regency Scottsdale Resort & Spa at Gainey Ranch, as a band played one night and he was enchanted. When kids are in new environments and out of their usual comfort zones, it sometimes emboldens them to try things they otherwise wouldn’t. Max wanted to go back every single night. It helped that the guitar player was named Max. Here’s my Max and, yes, he’s with the band.

3. You get a break you need (and deserve). If we’re going to a resort for vacation, we usually choose one that offers childcare; my husband and I need time to ourselves to decompress and be together. I always check in with the childcare or day camp manager ahead of time to discuss Max’s needs; most places are usually accommodating. One day, we visited the beautiful Fairmont Scottsdale Princess. The kids checked into Bobcat Billy’s Clubhouse for activities, arts and crafts and fishing in a pond; the staff couldn’t have been more awesome. My husband I checked into our own cabana. We nibbled, napped, watched TV, swam and vegged, and it was heavenly.

4. And then you can take even more of a break while your husband watches the kids. I got a Desert Hot-Rock Massage at The Willow Stream Spa, and I can’t remember the last time my muscles were that happy. First, the masseuse rubbed warm oil all over my body; next, she massaged with hot, smooth riverbed rocks. One word: OMG.

The waterfalls at the spa. Wish you were there? Me, too

5. Travel lets kids do therapy in new ways. Here’s Max in the Sonoran Splash Pool doing aquatic therapy. Of course, there’s nothing like the physical, occupational and speech therapy he regularly gets every week—but being on vacation gives kids a chance to flex their muscles in different ways. Even better if it involves a floating plastic car.

Physical therapy: The nice walk we talk around the pond

Occupational therapy: “Cooking” in the Children’s Museum of Phoenix

More occupational therapy at the Musical Instrument Museum in Scottsdale

6. Travel encourages independence. Max tends to be more of a do-er at school than he is at home. By that I mean, he’ll gladly feed himself at school but at home, he tries to get me or my husband to feed him (I refuse, Dave often caves). At school Max is fully potty-trained; at home, he is still working on it. When we’re away on vacation, though, our routines are upended—and Max is more willing to do stuff on his own. It helps to be motivated by tasty treats like guacamole; Max developed a passion for it. When we had dinner at La Hacienda Mexican Restaurant, Max downed an entire bowl of guacamole by himself (and helped make it, too). We all enjoyed the Roasted Corn Soup, Mexico City Fajitas (chicken and steak) and Cinnamon Churros.

Mommy’s favorite: Tuna Ceviche with ahi tuna, red onion, mango and mole verde vinaigrette (I apologize if I’m making you hungry) (I’m about to make you thirsty, too)

The evening entertainment: Flaming Coffee

Mmmm, mmmm, mmmm

7. Travel opens kids’ eyes. Everything we did on our vacation was new, and everything was exciting to the kids. One of their favorite experiences was our tour of the Sonoran desert through Green Zebra Adventures. Max was practically in a trance, he was so fascinated by everything we saw.

He thought the bumpy part of the ride was a laugh riot

We all came home from Scottsdale happy, relaxed and craving guacamole—I’m already planning our next trip. Max, meanwhile, wouldn’t let us put our big family suitcase away; it’s been parked in a corner of his room. Sometimes, he gestures at it and I’ll say “Max, you want to go on a trip?” And he’ll say “Eeeee-yah!” ["YEAH!"]. And then he’ll ask, “Too-aye?” ["TODAY?"]

Celebrate Yourself Today, Too!

May 15, 2012 at 7:17 am , by Ellen Seidman

Flowers! Cards! Chocolate! Breakfast in bed! Hopefully, you got your fair share of Mother’s Day treats. All I wanted was to sleep late, and my family gladly obliged.

By now, you’ve returned to your uncoddled life and the 99,999 things you do for your kids, particularly if you have one with special needs. This week alone I will…

• Drive my son, Max, to and from assorted therapies

• Take him to his annual pediatric neurologist appointment

• Look into finding a good drinking cup for him (he has trouble grapsing things)

• Work on putting together words to form a sentence, using his speech app

• Call the insurance company for the bazillionth time to go over dozens of unpaid claims (and then get that person’s supervisor on the phone, most likely)

• Fill out medical forms for summer camp

• Get the doctor’s office to sign forms for summer camp

• Re-order the anti-seizure medication

• Continue to work on potty training/pray it will happen

And that’s not counting the other ways I take care of him, or his sister, or my family.

Your tasks may be different, but I have a feeling you can relate. As moms of kids with special needs, we do more than other moms. And we don’t get ourselves credit for it (probably because we don’t have time to think about all that we’re doing). (Which is probably a good thing.) (Otherwise we’d feel even more tired.)

So I’m here to say, today is Mother’s Day, too. So is tomorrow. And the day after. And the week after. Every day should be a day to give yourself props for all you do, and for holding it together without losing it. Well, usually without losing it.

GO US!!!

 

From my other blog:

Top 20 reasons moms of kids with special needs rock

20 more reasons moms of kids with special needs rock

 

Image of mom with little hearts via Shutterstock  

The God Box: Lessons My Mom Taught Me About Life…After She Died

May 9, 2012 at 7:09 am , by Ellen Seidman

This guest post is from Mary Lou Quinlan, author of the new book The God Box: Sharing my mother’s gift of faith, love and letting go. Quinlan is an accomplished writer who’s written for Real Simple, More and O: The Oprah Magazine, and authored several books including Just Ask A Woman. She’s appeared on Good Morning America and the Today Show, and is considered one of the country’s top experts on women’s behavior. The God Box is a beautiful, inspirational book that’ll remind you of what’s most important in life. Check out her message to busy-busy-busy moms (in other words, every mom!), just in time for Mother’s Day.

If you’ve ever lost someone, you know that the sadness doesn’t end with the memorial. What’s harder is missing the “every day” of that relationship. When my Mom died, I longed for the nightly phones calls, the sound of her contagious laughter, and even her constant stream of advice, asked for or not.

But I was lucky. Mom left behind her God Box, actually ten boxes filled with 20 years of handwritten petitions. Mom turned to the God Box whether asking for help with finances or pleading for a cure to her blood cancer. Through her God Boxes, I could hear her again, still by my side. Here are glimpses into what I learned inside.

Writing things down is an amazing spirit-lifter. Most of us write ‘to do’ lists to de-clutter our minds. But why not write down our deeper worries rather than letting them fester? Whenever anyone expressed a worry, Mom would simply grab whatever was at hand, even a torn paper towel and write it down and put it in her box.  Giving voice to a concern is the first step to moving on.

Giving over your needs doesn’t mean giving up. I am a Type A, self-reliant sort of woman. If there’s a way to fix something on my own, I am on it. But Mom knew that asking was not only a way to lighten the load but a sign of strength. She wasn’t afraid to ask for guidance with the smallest issues. I’ve learned how good it feels to get the support that comes from just asking.

Say thanks, even when the answer is no. It’s easy to be grateful when things turn out well. When I got the “all clear” after radiation for breast cancer, I even thanked the corner coffee guy. But how about when I got the diagnosis in the first place? No happy dance of gratitude then. Yet that early mammogram indication was a gift. Mom said “Thanks” more often than “Please”. And somehow, more good things came her way.

Never, ever, ever lose hope. I can be impatient, whether I’m waiting for my nails to dry or the sun to come out. Mom knew that life’s tougher obstacles take time, so she wrote repeated pleas, not out of desperation but from her deep well of perseverance. I found multiple notes, re-asking “Please sell our motorhome” as well as praying for a miracle at the hematologist’s office. Mom was relentless. To her, losing hope meant she hadn’t tried hard enough.

Love like there’s no tomorrow. In the God Box, Mom detailed the smallest joys of her life with her family, as well as her wide circle of friends and strangers. Mom didn’t save up for the big moments to say “I love you.” She said it on the spot. She was creating her own legacy to us, even when we didn’t realize it. She taught me not to wait to say what is in my heart, even if it’s just on a scrap of paper and saved in a box.

The Special Needs Care Crisis—And What Can Be Done

May 3, 2012 at 6:57 am , by Ellen Seidman

“The special-needs population is growing. Government funding is shrinking,” proclaimed the recent Newsweek piece The Coming Special Needs Care Crisis. Reading the realities the piece laid out was depressing—and not total news to me. I already know that our state’s funding for adults with special needs is getting cut back, and that the wait list for housing is very long. I know of the stats about higher stress levels among parents of kids with special needs, both because I’d reported on them and because I live that life. I know all about the day-to-day care and concerns of raising my son, Max.

The article also spoke of the isolation parents of kids with special needs can feel, thought it didn’t mention how incredible online support groups and blogs have been for sharing inspiration, information and virtual hugs. It didn’t touch on the implications of ObamaCare for kids with special needs. It also didn’t include, sadly, any constructive ideas for what could be done to help our kids get the services and care they need, now and forever. (It also referred to autism as the “800-pound gorilla in the room,” a dubious choice of words.)

I don’t have the answers; I’m not an expert. But I can share what’s helped me fund my son’s care, along with my thoughts on what could help boost his chances (and other kids’) of getting good care down the road:

• Ask for help. When Max was an infant, we knew he was at risk for serious issues; he’d had a stroke at birth. So we got him a ton of therapy. The insurance company often didn’t reimburse us, and costs were getting out of control. So I asked my parents to start giving him the money they were going to put into a college fund. The fund could wait; Max needed intensive therapy early on in life. There’s no shame in asking relatives to make contributions to your child’s care. One new way to get help: Tadpole Adaptive’s new special needs equipment registry, where parents can register for gear their child needs and friends and family can contribute.

• Find local resources. Years ago, I signed up for a respite care program through our branch of The Arc that gave us 14 free hours of caregiving a week. Over the years, I’ve also found qualified sitters by posting notes on bulletin boards at local colleges that teach pediatric physical, occupational and speech therapy; the students have always been eager for the hands-on experience and generally wonderful.

• More government regulation of insurance payments. There are currently proposals in several states, Kaiser Health News recently reported, that would require insurance companies to limit the co-pays for physical, occupational and speech therapy. Most would require that the fees cost no more than a visit to a primary care doctor (currently, some insurance companies consider these  ”specialty” visits and charge increased co-pays).

• Pool parent funds. Last year, I went to a local seminar on Medicaid. The administrators talked of ridiculously long wait lists for housing and how often those who needed emergency placement (say, an adult with disabilities living with an elderly parent who died) took priority. The ray of light came when one rep spoke of parents pooling money for their kids; she knew of several families who’d combined funding they received from the state to buy a home, staffed with aides, for their children with disabilities. That seemed promising to me.

• Push Congress for more funding. With the recent news from the U.S. Centers for Disease Control (CDC) that 1 in 88 kids have autism, it’s a sure thing that the forces behind that disability will lobby fiercely for increased funding for kids and adults on the autism spectrum. Yesterday, protestors packed the Capitol Rotunda to speak out against proposed cuts for programs for those with intellectual disabilities, with representatives and senators joining them. One simple thing anyone can do: Write your congressperson and urge him or her to push for funding for the care of children and adults with disabilities (find your rep here).

What hopes and ideas do you have for navigating the financial costs of our children’s care, now and in the future?

 

From my other blog:

Myths and realities about financial planning for kids with special needs 

An autism-friendly performance of The Lion King: May we come too?

 

Photo of girl in wheelchair via Shutterstock