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

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?"]

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  

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 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

A video of a boy with autism playing Billy Joel’s Piano Man went viral over the weekend. It’s awesome to me not just because this child, Ethan Walmark, has autism, but because he’s a six-year-old playing like this. Billy Joel was pretty impressed, too. As a statement he issued said, “I think I like his intro to ‘Piano Man’ is better than mine. And this kids plays with a lot more energy than me. Maybe he could teach me a few things.”

http://www.youtube.com/watch?v=CpF3326_b5g

That’s just one of several amazing videos on Ethan’s YouTube channel (I was totally charmed by Dear Prudence; also, I desperately wanted to pinch his cheeks). Last year, Ethan wowed a crowd of 15,000 at the 2011 Autism Speaks Walk with his rendition of Imagine.

At first, as a local news site reported, Ethan’s parents weren’t sure if encouraging Ethan’s interest in music was good for him. They said that friends told them it would allow Ethan to escape to another world, instead of interacting with people. But they went with it, and Ethan’s been seeing a music instructor for several years.

My son, Max, has cerebral palsy. I can say with certainty that music has been incredible therapy for him. We’ve had a music therapist come to the house for several years. You can see part of a session here, a song dedicated to one of his friends at school:

http://www.youtube.com/watch?v=MzUgdWz_c5c

Max has issues articulating words, and he’s actually sang several before he’s ever spoken them. At school, he’s now part of a group learning to play the keyboard and the teacher says he has a big smile on his face the entire time. One Max’s favorite activities is hanging in our playroom, playing made-up tunes on his guitar and singing along. I’m often not sure what the words are but to me, anything that encourages Max to use his voice and communicate his feelings is An Awesome Thing.

How has music made a difference in your child’s life?

From my other blog:

Max is now a barfly and a groupie

10 ways to encourage your child to talk

On the road of special needs parenting

Screen grab/Ethan W and Piano Man video

April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers who have kids with autism. Today’s guest post is from Emily Willingham, an autism parent, science writer and self-described “compulsive biologist” who blogs at The Biology Files and Double X Science. She also is author of The Complete Idiot’s Guide to College Biology and science editor at the Thinking Person’s Guide to Autism.

What autism means to me and my family:

I can’t say how autism stands out as having meaning in our family because it has always been a part of our family. It’s just a part of who we are, of who my son is. We don’t know anything different, and we aren’t particularly interested in knowing anything different. What we do find is that because of autism, we have become educators and advocates in ways that we hadn’t anticipated before we had children.

My child is awesome because…

My son is passionate about many things, including acorns, science, Pokemon, reading, Mario Bros., Mystery Science Theater 3000, and nature documentaries, but he’s awesome because he is effortlessly the funniest person I’ve ever met.

Three things I want other parents to know about my kid and others like him are…

1. Never underestimate his abilities. 2. Never underestimate his potential. 3. Never underestimate him.

One misunderstood thing about kids with autism is…

Many people have an impression of autism as a monolith or as two populations of people, those who are like Rain Man and those who are like Temple Grandin. In between and on either side of those high-profile representations of autism are a million gradations, and a person’s place on the autism spectrum can itself vary from day to day. As my son says, some days are more autistic than others.

Some of the best things I’ve found to help my child are…

Being there for him, using my instincts to understand him, having patience and waiting for the right moments for specific activities, conversations, and interactions, working always to understand what his behaviors are communicating to me.

My most effective parenting strategy is…

The same as the best thing I’ve found to help my child–being there for him and always focusing on what his communications tell me about his needs. One of the best decisions we made as parents was to homeschool him because I can adjust every day to his specific in-the-moment needs, cutting back on certain things on his more unfocused days, homing in on weaknesses like anything related to executive function and really taking time with it, speeding through the things that he grasps immediately, and always being able to separate the social and the academic so he can focus on each appropriately.

One of my favorite stories about my child is…

We were walking through a pretty empty mall for indoor exercise one rainy day during homeschool, and he was hanging on my arm as he always has done and continues to do. It gives him support because of his low muscle tone in his trunk, and he also likes to squeeze my arm a lot. A lot. As I often do–and as he appreciates–I said to him, “You sure are my barnacle today,” and he responded without missing a beat, “Shhh. Quiet, Mama. I’m filter feeding.” See? He’s funny.

April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers who have kids with autism. Today’s guest post is from Lisa Quinones-Fontanez, who describes herself as “a secretary by day, an MFA creative writing CCNY student/blogger by night, and Mommy round the clock.” She’s mom to Norrin, who’s six, and blogs about autism, family and life from an urban Latina perspective at Autism Wonderland.

It’s bedtime and I ask my six-year old, Norrin, to pick out his bedtime book. He taps his chin with his index finger and says, “Hmmm let’s see…I know!” He pulls out a book we’ve read hundreds of times before: Frog and Toad All Year.

My head hurts and I want to skip the story. But I don’t. It’s part of our routine. Instead of reading all the stories in the book, I flip through a few pages and start reading The Corner, a story about the anticipation of spring. But Norrin likes to start at the very beginning—winter.

I’m glad winter’s over. It’s been a mild one, but I couldn’t wait for spring.

When I was pregnant with Norrin, I knew that parenting wouldn’t be easy. I knew that some days would be rougher than others. And I read a bunch of parenting books, thinking they would prepare for the seasons ahead.

But parenting a special needs kid? Nothing prepared me for that. Rough days can easily stretch out into weeks, sometimes months. Months where everything seems uncertain. Weeks, when progress seems stagnant. Days, spent in waiting rooms. Nights, when no one sleeps.

It’s been a long month.

There have been appointments to make, doctors to see, evaluations to read and forms to fill out. I have spent hours on hold. Leaving voicemails. Writing emails.  Waiting for calls to be returned.

And when I come home from work, there is still dinner to cook, dishes to wash and homework to do.

I am tired, frustrated and discouraged. There is so much to get done and there is only one of me. Getting the appropriate services for a special needs child shouldn’t have to be so difficult. And I question myself constantly. Am I doing enough?

But no matter how tired I am, no matter how long the day, I read a bedtime story to Norrin. And tonight is Frog and Toad All Year.

When I finish reading the story, I close the book hoping Norrin picks up the cue that it’s time to go to sleep. He doesn’t. He asks me to continue. And as I open the book again, I notice the familiar scrawl on the very first page.

Whenever I purchase books that have some kind of sentimental value, I write a sentence or two and date it. On February 27, 2010, I wrote: I love reading to you. I cannot wait for the day you will read this to me.

It’s two years later and Norrin can read entire books. He can tell me the names of the authors. And when he tells me the story he wants to read, he looks me right in the eye.

At bedtime, he is able to put on his pajamas with very little prompting.

He can pour his own juice.

He can tell me when he has to use the bathroom.

He can zip up his own coat.

He can put on his book bag.

And when he does something wrong, he says, “I’m sorry.”

I think of all the things Norrin has learned to do in the last two years; all the smallest of smallest things that can be challenging for a boy like Norrin.

I think of all the appointments and days spent in waiting rooms.

The phone calls and the waiting on hold.

I think of every email that I needed to send and all the copies I needed to make.

And I’m no longer discouraged or frustrated because it’s all for Norrin. Everything I do makes a difference for him. While I’m still sort of tired, I am in complete awe.

It’s like those first few days of spring, when you notice the buds on tress. You wonder when it happened, because you couldn’t remember it being like that the day before. But it doesn’t matter when it happened or that you didn’t notice—you just take the time to appreciate its beauty.

What autism means to me and my family:

One of the nicest parts of parenting an autistic child from an autistic vantage point is that I feel my son and “get” each other in special way that encourages  teamwork between us. His autism and therefore his need for assistance is more evident than mine, but he isn’t content to just receive help. He wants to offer help too.  He notices when I get into trouble, and without my even having to ask him, he passes along skills that I never mastered, especially in motor planning, an area in which he’s conquered many difficulties that I still haven’t. It’s been much easier for me to put my shoes on correctly since he’s started teaching me what he’s been taught. Sometimes non autistic people are amused when they see a highly educated, verbal person like me struggle with simple motor tasks that come easily to most adults. My son is one of the few people I can count on to never, ever laugh at me for that sort of thing, and that makes me feel safe around him.  I suspect many parents have to wait until their children are grown to experience that kind of reciprocity.

Three things I want other parents to know about my kid and others like him are…

Alone time is critical,  not just so that my son can avoid sensory overstimulation, but also because he needs quiet or even stimming breaks so he can deeply process all he’s observed or been taught on any given day.

Assume empathy. Despite reports to the contrary,  most of us are as empathetic as typically developing people, and I believe my son has a surplus of that quality.

When my child breaks something or pushes another child, he faces consequences. If he behaves in an unusual way  that is not hurting anyone or anything, I don’t apologize for him, or expect him to apologize for himself. I cannot imagine raising a confident child in an atmosphere poisoned by shame and self-loathing. When others have a problem with nondestructive, unaggressive evidence of his or my autism, it is their problem, not ours.

One misunderstood thing about kids with autism is…

There’s an assumption that the less verbal a kid is, the less independent they are in daily life, even if they need intensive support in school, as my child does. I suspect that talking is the single most difficult task that’s consistently demanded of my child. To compensate, he has learned how to do things at home for himself because he finds it easier to solve his problems quietly and creatively himself than to formulate a verbal request. He’s all action, very little talk. When a typically developing friend complained about the impossibility of reaching a cup on a high shelf, my son just got a stepladder and delivered the cup to his friend. Of course it’s important to encourage as much speech as possible, but I’m still really proud of him for cultivating self-sufficiency to cope with his language delay.

Some of the best things I’ve found to help my child are…

My son not only enjoys music and physical activity, they also help him self-regulate and regain focus. Both are inexpensive DIY coping mechanisms to address anxiety and promote focus.

My most effective parenting strategy is…

Autistic people are so often patronized or treated like we’re invisible, many of us have not experienced what it feels like to be approached with respect. So my husband and I try to consciously teach my son the concept by treating him with respect and by making a special effort to treat others with respect in his presence.

One of my favorite stories about my child is…

It’s just too hard to choose, so I’ll just offer up this week’s excitement. A few nights ago my son did something that reminded me to alway assume his comprehension. He needed a  haircut and I said so in front of him. Before I got around to taking him to the barber, he became rightfully impatient with my dilly-dallying and cut his own hair in the middle of the night. The action was his, but the responsibility for it was primarily mine. As we surveyed the bald patches the next morning, his only comment was “Not going to the barber.” I advised him not to jump to any conclusions about that. One buzz cut later he looks like a tiny,but noble, Marine. Semper fi.

Always real, ever funny, his stories portray how an ordinary dad makes the most of life with a teenage son, Griffin, who has autism. He is also the author of Big Daddy’s Tales From The Lighter Side Of Raising A Kid With Autism. The following is an excerpt from his latest e-book, Son of Big Daddy (a collaboration with blogger Lynn Hudoba) and is available on Kindle.

Griffin, my fourteen year old son, is autistic. I could sugar coat it by saying he is merely developmentally challenged or gifted. But the truth is, no matter what label we use, Griffin is significantly disabled by this perplexing disorder. Autism is a huge part of our lives.

One morning, about a year or two  ago, Griffin said to me,

“Daddy!  I dream last night!”

That got my attention. Up until then I didn’t even knew if Griffin dreamed. Of course I suspected it. However, he never told us he did. It was still a rarity for him to talk about something as abstract as a dream. So I pressed the subject by nonchalantly asking;

“Oh yeah? What did you dream about last night?”

Without hesitation he blurted;

“Last night I dreamed Barney was at the Weather Channel talking about severe weather alerts in the Northeast! Do you believe that?!?”

Yes I did and I still do. It may be odd that my teenage son dreams about an imaginary, purple dinosaur broadcasting storm alerts. But this is my life. In spite of the fact that it is not always easy, life with Griffin is, humorously bizarre. We believe the only way to approach it is to kick back and enjoy the show.

Griffin loves elevators, Wilford Brimley, and the Weather Channel. He has embraced these simple pleasures with the same passion some kids reserve for their favorite sports teams.

Griffin’s infatuation with the weather started after Hurricane Wilma blew through Florida. His fear of thunderstorms has been incredible ever since. Desperate for anything to ease his anxiety, we thought if he could see weather reports and know what’s coming, his angst would be somewhat allayed. So we introduced him to The Weather Channel. It wasn’t long before Griffin became a weather junkie.

While being constantly tuned into the weather has done nothing for his trepidation of thunderstorms, it did give him something to talk to his family about. Obsessively.

During one recent squall, Griffin hunkered down in the closet and sobbed about how much he wanted to be storm chaser. When his mom, Mrs. Big Daddy, calmly explained that storm chasers don’t hide in the closet when it drizzles, he nearly vomited. Since crying so hard you puke is not what the Weather Channel is looking for in its on-air personalities, our plan for Griffin becoming the next Al Roker seems to be fading.

In a way, being told your child is disabled is a death. A death of what you had planned for your life. Griffin has taught us that getting too attached to having things go as you planned, is a recipe for disappointment. By accepting that we have little control over our futures, we spend more time living in, and enjoying, the present. Even when it rains.