The Truly Accommodating Splash Park Every Special Needs Parent Should Know About

Morgan’s Island Water Park is the place where kids with special needs aren’t just included; they are ushered in with open arms and free admission.

If Disney is the Magic Kingdom, this is the Magic Kingdom’s cooler sister.
Morgan’s Island Water Park is the place where kids with special needs aren’t just included; they are ushered in with open arms and free admission. Yes, you read that right. All kids with disabilities get into this water-themed park for free, and that’s just the beginning of its charm.
As the mom of a son with cerebral palsy, we know what “handicap accessible” usually means for a person who makes 90 percent of his movements in a wheelchair. It means ramps with bumps and peak-like curbs. It means elevators in dark corners far away from the main attractions. It means winding paths that you cross your fingers on, hoping they will wind you back to the main thoroughfare. It’s often a game of trust and secret doors and mazes that make you wish for the wheelchair edition of Uber.
But Morgan’s Island seems to be the anomaly. No more ramps. How about riverboats that rise to meet you instead? No more lugging my 40-pound five-year-old through the splash pads so he can get in on the action. They’ve got waterproof wheelchairs instead that run on air, the “PneuChair,” which you can check out – for free. It’s like a wormhole into Marty McFly’s better world.
We’ve had the opportunity to go to Disney World and let it pass us by. Even with the fast passes for those with special needs, it just felt too…daunting. But Gordon Hartman, the owner and creator of Morgan’s Island, seems to have thought of everything. He’s even installed areas for privacy when kids need to be moved in and out of wheelchairs. He’s got water-proof wristbands for tracking your kid if you know he or she is a wanderer.
Oh, and if your child is sensitive to water temperatures? No problem. The park can adjust the temps to their comfort level. And one of the biggest things for us: Hartman has limited attendance to half-capacity to keep the crowds down. One trip to an especially busy farmer’s market can send my son into a tailspin, so I appreciate the sanctity of a little space.
Hartman says his main goal is “inclusion for those with and without disabilities.” As the father of Morgan, a young woman with disabilities of her own, his foresight makes sense. This is what all parents of kids with special needs learn to do – think ahead to all contingencies. That’s why he brought in other parents, therapists, and doctors to consult during the planning phase.
Hartman has also created a workforce, a third of which is adults with special needs. When my son sees a grown-up spinning wheelies in his wheelchair or using sign language with him, he gets to see a glimpse of a successful future, and so do I as his mom.
When asked about this non-profit park, Hartman said, “It is the most fulfilling work I could ask for…. It’s better than making a dollar. This isn’t even work, this is something different. I don’t wake up for work feeling tired, I wake up wanting to get started.”
The park opened Father’s Day weekend to great aplomb, and we’re planning our trip now. I’ve shown the videos to my son. He points at the screen and laughs and signs for “more.” I’ve tried to explain that you can’t have more of something you’ve never had. But in this instance, I catch myself thinking “more,” too.
I want more of this in the world – more places where “all-inclusive” really does mean what it says. At least we’ve got a start.

The Botox Boost: It's Not Just for the Aging Anymore

It turns out, Botox does more than fight off the wrinkles. If beauty is skin deep, we’re reaching past that to get to the root of our son’s struggles.

I miss Dick Clark. I miss watching old re-runs of “American Bandstand” and ringing in each year with his New Year’s Rockin’ Eve. He was like a cordial but distant relation stopping by to wish me good cheer. He was always happy, or at least it seemed that way as the decades passed and that smile grew wider and brighter and tighter.
Of course, that’s what plastic surgery and a steady regimen of Botox can do for you: perpetual happiness, or at least some version of it. There’s just something about Botox that gives me the creeps. It’s like those Mardi Gras masks – frozen smiles that cannot shift from mood to mood. I’ve never liked clowns for that reason. I don’t trust someone whose face doesn’t change with intention.
And yet, I’m getting Botox for my son.
 
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It turns out, Botox does more than fight off the wrinkles. If beauty is skin deep, we’re reaching past that to get to the root of our son’s struggles. His leg muscles are stiff and tight as rubber bands stretched to the breaking point. He’s a rusty tin man trying to move like a gazelle every time he walks.
His dystonia – which sounds like a trendy Paleo eatery – prevents his mind from telling his body what to do. Though the cerebral palsy that caused these developments has not limited his understanding of the world, it has limited his exploration of and interaction with it.
So, we stretch. Each morning when I put on his clothes, we count to 10 again and again, and I hold on to those ankles as they shake with the effort to loosen. I lean in to his hamstrings with a gentle but unrelenting pressure that will help him sit unassisted and stand in his walker and bend over in his wheelchair.
But it’s not getting any easier. As he gets older, he’s fighting a rapidly growing body, fighting the tide of what should be the natural process of moving from baby to kid. His growing pains are more painful than most. So, with our pediatrician and physical therapist’s recommendation, we’re getting Botox. And I’m researching the heck out of it.
We said no to Botox once before. When another specialist wanted to inject it into the glands in his throat to reduce his drooling, we felt it was unnecessary. Even with his trach and enlarged tongue and feeding difficulties, we still did not feel comfortable choosing an elective process that had risks. Did I really want something injected into my son that might lead to botulism? I could deal with the drool.
But now, now it has become necessary, and we say yes if it can help him walk and find his rhythm in the flowing traffic of the world.
Because Botox essentially induces paralysis, it can target those wire-tight muscles that none of my stretching can reach. It can go in there and tell those guys to sit back, relax, and enjoy the ride so his other muscles get a chance to shine. The hope, of course, is that when the Botox wears off, the newly used muscles will help to keep the tighter, more curmudgeonly ones in check. His body will find the yin and yang of it.
Botox is a commitment. It’s not a one-and-done thing. He will need continuing treatment every three to six months. But isn’t that what life and parenting really is – a continuing series of adjustments in the hopes of improvement and strength?
Botox doesn’t bring happiness, but for us, it could bring freedom. It could mean the ringing in of a new season in life. I think Dick Clark would be happy for us.

The Handy Dad He Didn't Know He'd Need to Become

Parenting a child with special needs requires you to ignore 90 percent of the material out there for “kid tips and tricks.”

HandyDad
I bought this book, “The Handy Dad“, for my husband on his first Father’s Day: “25 awesome projects for dads and kids.” How could I go wrong?
I didn’t know just yet the limitations we would face, despite the fact that our first Father’s Day was mere weeks after coming home from the NICU with a preemie son who had undergone a tracheotomy to breathe and would soon need a g-tube to eat. I couldn’t foresee that skateboard ramps and climbing walls were not our kind of “awesome.”
For the first few years, the book stayed on the coffee table, taking up prominent residence with tomes on local walking trails and world maps – places we had been or dreamed of going. The pictures in the book were cool, and I had always wanted to rig a zip line or rope bridge. It was all still workable, still possible in the list of possibilities all parents hold for their kids.
The problem, I told myself, while changing diapers or suctioning out the trach, was that my son was too young yet. Give him a few years, and we’d start dog-earing pages. The projects would come to good use.
 
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Now it is another Father’s Day. Years have passed, and I stumbled upon this book in my son’s bookshelf, at the back, propping up a nightlight. We have not climbed walls or constructed skateboard ramps. But I’m not sorry. My husband has written his own book of sorts.
His table of contents now includes: 1) How to Repurpose a Highchair Tray for Wheelchair Use, 2) How to Extend the Life of a Hiking Backpack to Carry a 45-pound Toddler, 3) Where to Rent the Best Beach Wheelchairs, and 4) How to Turn a Kid Bike Carrier into a Handicap Swing.
He didn’t know what he was getting into with fatherhood. He’s a numbers guy. He works with computers and likes to hear the statistics on all the possible outcomes for each problem. But parenthood is not – for us or anyone – a simple equation. Sometimes the odds work in our favor and sometimes they don’t. Sometimes the specialists give us a thumbs up for all the good work, and sometimes they find new mysteries to solve.
Parenting a child with special needs requires you to ignore 90 percent of the material out there for “kid tips and tricks.” My Pinterest boards are filled with speech activities and ideas for how to sneak in physical therapy on vacation. We’re not that into fun foodie adventures or homemade teeter totters.
Not long ago, my husband got stuck in a McDonald’s slide. There aren’t too many rules in the McDonald’s PlayPlace, but we managed to break one. Adults aren’t allowed on the equipment – for good reason it turns out.
One minute, I see a hairy leg dangling from the entrance, and the next I see his face, in the clear bubble at the top, calmly yelling (if such a thing is possible) for help. I did what any good wife would do. I laughed and took pictures.
He got himself out eventually with our son in tow. You see, that’s why he risked it in the first place. He couldn’t stand to let our kid miss the fun. Where most see limitations, he sees potential. So, he unstrapped our son from his wheelchair and shimmied him up the tubes.
When they finally emerged, sweaty and laughing, all I saw was my son signing for “more.” With a deep breath and a French fry for the road, they began the climb again. It turns out my husband is, in fact, a pretty handy dad.

Is It Discrimination? The Reality of “Choice Scholarship” for Kids With Special Needs

The Choice Scholarship Program allows kids who win the lottery to apply to both secular and religious private schools. But what if they have special needs?

I was listening to NPR, as I usually do on my way to pick up my son from preschool before the soundwaves get hijacked by Bubble Guppies DVDs. This is my 15-minute news window, where I fill my head with as many current cultural events as I can before re-entering kid kingdom.
I didn’t know what I was getting into that day. That one bout of radio news would send me into a sleepless night that I would spend erecting a soapbox from which to issue my grievances. The segment was on public versus private school usage of vouchers in Indiana. I live in Tennessee. This should not have triggered me, but it hit me all wrong, like a sharp jab in the funny bone.
The current policy of the “Choice Scholarship Program” allows kids who qualify and win the lottery to apply to both secular and religious private schools. According to NPR, “how it came to be, how it works and whom it serves — has become a national story of freedom, faith, poverty, and politics.”
Because here’s the thing: If a kid with special needs wins the golden ticket, his or her options are still limited. There’s so much leeway in the private school’s jurisprudence that the child can be turned away for having special needs – something a public school could not do under the Americans with Disabilities Act. Private schools have been turning away kids, not because they are unwelcome, but because their needs will not be able to be met. The funding is just not there.
 
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And that’s what got to me. That’s what led to my insomnia and mind melt. My son is five and has cerebral palsy, which has resulted in global developmental delays. He attends a private inclusive preschool for children with both normal development and special needs. Many of his peers are siblings of other kids with disabilities or the children of the therapists that work there.
The school is a magical unicorn of hope. It’s been his castle on a hill since he was two. But it ends in a year. We’re already pushing it, keeping him until six and past “senior” level. I’m rallying the board for a kindergarten, but time and money are hard to come by despite the need.
So, a year from now we will be attending assessments and requesting doctor’s recommendations and touring the public elementary school in our zone. We moved to our current county – one of the best in the state – specifically because we knew this day was coming and wanted to be prepared.
If you’re a parent of a child, with special needs or not, you think toward their future more than your current comfort. We couldn’t be in a better place as far as we’ve discerned from backyard talk and the cross-examining of his therapists. It’s going to be okay. But it doesn’t change the fact that we don’t really have another choice.
One of the women from Indiana interviewed in the NPR segment has three children – two girls and a son on the autism spectrum. She lucked out. Won the lottery. Her daughters attend her church’s school. She loves it dearly. But her son is not on the roster. They very graciously explained that, though he “can” attend, they cannot meet his needs. They simply don’t have the therapists, the specialists, the money to teach him.
Is this discrimination? Honestly, I’m not sure.
Wendy Robinson, Fort Wayne’s superintendent, says it is. Yet as a former teacher in both public and private schools, I’ve seen the reality of government funding. I know what money can buy. It buys special needs departments, speech programs, physical equipment, occupational therapists, training days.
It buys a future for my son.
I had been teaching for five years at the private school where I envisioned my children would attend when I became pregnant with our son, long enough to qualify for half-tuition – the dream and the goal.
But when my son was born 10 weeks early and diagnosed with CP one month into his NICU stay, I knew the dream would have to end. The school did not have a special needs program beyond general learning disabilities. They just weren’t equipped to deal with a kid who would come home with a trach and eventually need a wheelchair and speaking device.
They wanted to love him. But they could not teach him. To me, this is not discrimination. It is a recognition of limits.
But it still breaks my heart. It still led to our move into a different county. It’s still enough to keep me up at night asking – along with my compatriot in Indiana – why can’t my child have the same options as all the rest, even the same as his siblings?
I’m a realist. I get it. But I don’t have to like it. I don’t have to let it pass as easily as the turn of a radio dial.

What the Very Young and the Very Old Do for Us in the Middle

We need the verys – the very young and the very old. They are the emphases, the parentheses that bookend life.

“I love you very very very very very very much,” I say until the words run together into nonsense, until he’s laughing so hard in my ear he finally makes noise. I’ve hit the magic number with the huge and silent and then resounding belly laugh.
Very, verys have carried us in ambulances and hospital rooms, where monitor beeps have marked my verys like a metronome. Verys have carried us through tears and pain, when stretching gets too hard and ankles shake. Verys have carried him away from me and back again on stretchers. Pre-op to post-op, my verys march down the hall, persistent and unshakeable where I cannot go.
He is my son, but he often goes where I cannot follow.
 
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“I love you very very very very very very much,” she used to say to me before I fell asleep at night, holding her hand in case she tried to escape. She always tried – when it was time for the Chevy to roll back to Oklahoma and trace the highways to the red dirt to the mobile home made permanent on the lake.
I would explain, eight-year-old me would explain that grandmas aren’t supposed to leave. They are fixtures, like lamps, illuminating the dark corners of childhood that parents cannot, or do not have time, to see.
Grandmas chase the shadows away. Grandmas always wear sneakers and make salmon patties and let you pick all the flowers in their garden. Grandmas don’t care if you dig through their sewing drawers and glue every spare button onto construction paper. Grandmas hold your hand gently, without fear or impatience when you cross the street.
“Vvvvvvvv. Can you say it with me, son?” We practice together, him with his five-year-old mouth, a thirty-years-younger version of my own. “Vvvvvvvvvery good, my boy,” I say when he puts lip to teeth. I say it into his cheek, his neck, his belly. I let the “very much I love you” sink into his body, humming like a chant all the way through. He does not repeat it back, but I feel its acceptance in the muscles that relax.
“I love you very very very very very very much,” I tell her when she cannot speak. When she stands next to a teenage version of me, and her husband is lowered into the square bit of earth dug just that morning. Next to it is her spot, on reserve. I see her eyes roam over it. She does not know what to do with her hands, so I put a flower in them, and together we toss them down back to their origins in the red dirt.
Fifteen years later, and I have no words as she takes the place my grandfather saved for her. I wonder, under the hot sun, where her shoes have gone, the sneakers she always wore with pantyhose. I have not seen her in years, the boy in the wheelchair at my side keeping me home, keeping me close, because he is an extension of me just as I was of her.
The lifeline trails at one end now, waiting for me to pick up the tail like a lost balloon. I cannot look anymore, cannot bear the crank of the machine at the end as she’s lowered into place. So we walk and roll down the tree-lined paths between other lifelines, other bylines than our own, and I lean down and whisper the words he knows to expect, “I love you very very very very very very much.”
He reaches up a hand, pats my cheek, like a little old man.
We need the verys – the very young and the very old. They are the emphases, the parentheses that bookend life. The “very” years are our cocooning out and back again. We parents are a middling group, the most unsure of the crowd. We run the show, but the ones below and above have the better perspective.
That is why they always hear the ice cream truck and do not hold too loose or too tight when crossing the street.

Jimmy Kimmel Pulled at My Own Congenitally Defected Heartstrings

I can take the multiple open heart surgeries, the complications, the insurance battles, the fears, and the changed life. But you do not mess with my kids.

Jimmy Kimmel’s recent monologue about his son Billy’s heart condition and the whirlwind that was his birth, diagnosis, and surgery has struck a chord with many of us. I know that it pulled at my own congenitally defected heartstrings.

Let me explain: I was born with a bicuspid aortic valve (BAV). Basically, the aortic valve of my heart looks like a fish mouth (two leaflets) instead of a Mercedes symbol (three leaflets), which is, incidentally, a pretty good metaphor for my life. I am not all that special. An estimated one percent of the population has BAV, making it the most common congenital heart defect. Though some are diagnosed at birth, many, like me, do not find out until they experience symptoms or a catastrophic event later in adulthood.

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I found out when I took way too many decongestants my senior year in college because sometimes nurses make mistakes on prescription bottles. Sometimes mistakes result in a trip to the hospital to understand your tachycardia. Sometimes that isn’t so bad (really) because you get to leave in the middle of a final exam and by that point you had run out of things to say about Beethoven anyway. Luckily for me, a full cardiac work-up sometimes results in life-saving incidental findings.

My diagnosis is cataloged in a file in my brain where I store memories that make me want to take a time machine back to kick myself. The cardiologist who told me the news could not have been more blasé. I was twenty-one years old and alone at the appointment with no expectation of bad news, watching as he looked mindlessly at my echocardiogram report and said big powerful words in the distracted monotone of a man who could use a vacation, “You have a blah-biddy blah…in ten years get a cardiologist…it just might kill you when you’re in your 60s or 70s…oh and take antibiotics before the dentist…blah-bitty blah symptoms mean go right to the hospital…any questions?”

Naturally, in my recently college-educated empowered voice I chirped a devil-may-care, “Nope, sounds good!” 

The whole interaction took only a few minutes, and all I said was sounds good?! Time machine. Kick. Kick. Kick.

I never gave my condition too much thought, particularly after the demands of motherhood took over. Weird palpitations and periodic anxieties that my valve would someday get worse were assuaged at my yearly cardiology appointments. That is, until 2014. My first echo with a new doctor revealed an aneurysm in my ascending aorta. Like stenosis (thickening of the valve), and regurgitation (leaking), aneurysms (aortic enlargement) are among the complications of BAV along with scarier things like heart failure, endocarditis (infection of the heart), and aortic dissection (tearing of the aortic wall) or rupture.

My aneurysm became quite the a-hole in my life. It made it dangerous to pick up my snuggly four-year-old daughter or get pregnant again as we’d hoped. It had to go, and thus began our preparation for open heart surgery. Not the least of my concerns was protecting my preschooler from being traumatized by the whole thing. Having a sister and friends who are Certified Child Life Specialists® made all the difference. Together we came up with developmentally appropriate words, activities, and distractions that helped immensely.

These Child Life angels among us use evidence-based practices to help kids of all ages understand, cope, and play during difficult medical encounters. Their services are really needed, too. According to the Maternal and Child Health Bureau of the federal government, nearly twenty percent of all children in the U.S. under the age of 18 have special healthcare needs. Chances are you already know at least one family whose child needs clinical supports, in some capacity or another, and most of those families are carrying much heavier loads than they let on.

Tough times have a way of highlighting all kinds of strengths. My husband is a man of many talents, not the least of which is his carnival-act ability to guess weights and measures. He can eyeball the poundage of a pumpkin from across the patch, that kind of thing. I’m not bragging, but it’s like a superpower. So after several rounds of imaging gave us the exact size of my aorta, we began playing a game I called, “Would this fit in my aneurysm?” Sure it’s morbid, but it’s a lot more fun than you would think.

For those playing at home here are some items that would have fit:

  • My lip balm
  • My daughter’s toothbrush holder (even sideways)
  • My aspirin bottle (a cardiac gal’s best friend)

My BAV and pending open heart surgery now had my full attention. It turns out doctors and researchers had been hard at work in the 15 years since my diagnosis learning all sorts of new things.

For example, it appears to be a family affair. About 30 percent of immediate family members are likely to also have BAV or other cardiac malformations (with names like aortic coarctation, ventricular or atrial septal defect, abnormal mitral valve, aortic root dilation, or hypoplastic left heart syndrome). A study published in 2009 reinforced that idea and added that immediate relatives might also develop an aneurysm in their aortic root (where the aorta connects to the heart) even if their valve has three leaflets. There is still so much to be learned.

My six siblings (yeah, six, it’s a lot, I know) were encouraged to be screened, and so far all have been negative. Then, there was my daughter. There is a famous quote attributed to Elizabeth Stone, “Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body.”

Here she was twirling, skipping, and dancing outside of my body. This idea of her being my heart held new weight for me now. As a mom, I do not like anything messing with my children, especially when that anything happens to be my own genetics. Even so, I work in the field of public health where we deal with the idea of increased risk with measured caution. My little girl seemed healthy, and if she wasn’t, she would be in excellent hands.

So I didn’t panic about taking her to Boston Children’s Hospital to be checked. Thanks to the awesome staff and her spritely spirit, my daughter enjoyed getting EKG leads stuck to her little body and giggled during blood pressure hugs. She even lay perfectly still and quiet during the part the echocardiogram when they shoved the wand into her neck presumably to get a peek inside her soul. The girl was a champ! And her heart looked perfect.

Of course, it did. I knew it would. That is why the absolute relief that washed over me nearly knocked me off my feet. To say that our little girl is a better version of her parents is an understatement, and I could not be more grateful. (According to the National Survey of Children with Special Health Care Needs there are roughly 335,000 kids in the U.S. with cardiac conditions, and nearly half of those children experience daily limitations in their lives.)

Soon her baby brother will have to be checked too. He bounced into our family, a ball full of energy and vivaciousness, a little over a year after the open heart surgery that spared my diseased valve but replaced my ascending aorta. I hope that he too will avoid the diagnosis I may have passed along to him. If he doesn’t – if he takes after his mother – I just don’t know how my little fish-mouthed heart would bear it.

You come and mess with me, BAV! I can take the multiple open heart surgeries, the complications, the insurance battles, the silent fears, and the changed life. But you do not mess with my kids.

To all of you parents already in the fray, with your strengthened mom-armor and your sharpened swords: I am over here on the sideline with the others who are rooting for you. We are advocating for insurance coverage and research funding, hoping it will help. And if I join your ranks, I hope that dozens more spill in from every direction to take my place of support on the side, because none of us can do this alone.

How NICU Stays and Unexpected Challenges Affect Maternity Leave

Most mothers plan meticulously for their baby’s arrival but for an unlucky few, a premature delivery can derail every expectation.

The first months of a child’s life are a critical time for bonding, care, and recovery, but for many American women, those weeks are overshadowed by work and financial stress. And when a baby is born early or with special needs, that stress is intensified.

Most mothers plan meticulously for their baby’s arrival but for an unlucky few, a premature delivery can derail every expectation. For Rebecca Meredith, a first time mom with an uncomplicated pregnancy, delivering at 33 weeks was a shock.

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“I had my regular check up with my doctor at four pm and there were no problems. [That night] I went to the local hospital to check if I was leaking amniotic fluid with nothing but my purse and didn’t come home for three weeks after I was life-flighted to a hospital two and a half hours away,” says Meredith.

A few months earlier, Meredith’s husband had gotten a job in a different state and the couple had moved cross-country. Meredith had taken a new job at a Montesorri preschool and daycare while going through the process of transferring her teaching certification.

Ineligible for paid leave, she had initially planned to return to her job when her son was eight weeks old; he would attend the same daycare where she worked. But when eight weeks had passed, her son was the developmental equivalent of a one-week-old baby. The Neonatal Intensive Care Unit (NICU) staff had advised the couple to keep him out of daycare for a year if possible because his increased risk of infection was too great. Having left her family on the other side of the country, Meredith had no choice but to quit her job.

Meredith’s story isn’t uncommon. In the United States, only 12 percent of private sector employees have access to paid leave. For many women, this results in returning to work well before what is considered ideal. A shocking one quarter of women in the United States are back at work within two weeks of giving birth. Many of these women are mothers of premature infants who decide to keep what little maternity leave they have for when their baby comes home from the hospital.

Even the federal Family and Medical Leave Act (FMLA) provides little coverage for mothers. FMLA only covers employees at workplaces with more than 50 employees who have worked there for at least 12 months.

Meredith, like roughly 40 percent of Americans, did not qualify for FMLA. Even if workers are covered by the law, FMLA is only a guarantee of job security after 12 weeks. It does not require an employer to pay an employee who is on leave. Many parents, especially those faced with unexpected medical bills from a NICU stay, cannot afford to take unpaid leave.

Christiana Stafford, another first time mother, also faced the unexpected after giving birth to her daughter. After one week in the NICU, her daughter was diagnosed with Down syndrome and a heart defect that is common in babies with the syndrome. Stafford and her husband soon learned their daughter would need heart surgery before her first birthday, forcing Stafford to re-work her maternity leave plans.

Stafford went back to work when her daughter was 10 weeks old, saving the last two weeks of her paid leave and FMLA leave for when the baby would need surgery. “It was heartbreaking to have to decide to take her to daycare earlier than we expected,” says Stafford.

The weeks leading up to the surgery were filled with stress. “It was just a whirlwind of emotions and information all jam-packed into a few days and months,” says Stafford. “Having a baby with unexpected Down syndrome, having a baby with an unexpected congenital heart defect. And, hoping and praying she didn’t get sick in the weeks leading up to her surgery, which would have pushed it out even farther. When your kid’s in daycare, that’s nearly impossible.”

After her daughter underwent heart surgery at five months old, her supervisor ended up letting her take an additional third week of leave despite having exhausted her FMLA. Having a child with special needs also means extra doctors, specialists, and appointments. Stafford says she has to be careful now how she budgets her time, alternating with her husband for appointments and keeping an eye on how much available leave she has every time she gets her paycheck.

Paid maternity leave has numerous benefits, from increasing women’s labor force participation to decreased employee turnover to better health outcomes for parents and children. But with few American women qualifying, millions are left scrambling to even keep their jobs after a premature or special needs baby is born.

Back in the fall, paid parental leave received plenty of attention from both presidential candidates. In his campaign, President Trump floated the idea of a six week paid maternity leave for mothers who give birth. In the spring, he appeared to endorse paid leave for both mothers and fathers, but has yet to offer any details on the plan.

Critics worry his plan might not be enough to meet the needs of families facing unexpected circumstances. For parents caring for high needs infants, six weeks might not be enough time to even be discharged from the hospital.

“Parental leave is not this one-size-fits-all thing,” says Stafford. “So many variables can come into play.”

I'd Rather Bathe a Feral Cat Than Plan This IEP Meeting

Do not get me wrong, I would walk through fire for my son. That would be easier, actually, because at least then I would know the outcome.

I’d rather change my name to MC HB aka Tenacious Cakes and tour the country spitting mad rhymes about the dangers of Easy Bake Ovens than go through another IEP meeting. In other words, I do not want to continue preparing for my son’s meeting scheduled for tomorrow. (If you want to make the most of the conference-from-hell, you have to prepare.)

There’s a lot of legal jargon you must get through to understand your child’s rights. Then there are the acronyms. So. Many. Acronyms. IDEA, ADA, FAPE, SP, OT, SLP, SPED, ABA. OMG! Honestly, you need a degree (or at least a lot of time) to get to know these bad boys. It’s assumed that all parents of special needs kids have tons of free time. Yeah right. It’s maddening.

Just when you think you can’t possibly take anymore, it’s time for the meeting! Everyone there is stressed. The SPED officials have deadlines, they’re under incredible amounts of pressure, and it’s part of their job to tell you what your kid cannot do.

SO. MUCH. FUN.

I have been a total stress case over this IEP meeting for over a month now. Today I needed a break. So, I put together this list of all of the things I’d rather do than read case law, study acronyms, and, finally, attend the IEP meeting.

1 | Read the explicit lyrics to “Get Low” by Lil Jon to a group of senior citizens

2 |  Justify my credit card charges to my husband…to his face

3 | Run down the beach next to Giselle Bundchen in matching bikinis on live television

4 | Get my lady business waxed into the shape of a question mark

5 | Roller skate through Walmart asking strangers if they are “The Gatekeeper”

6 | Get stuck in an elevator with Jay Z and Solange Knowles

7 | Bathe a feral cat

8 | Hang out in the airport smokers’ lounge while suffering from a stomach virus

9 | Eat sushi from the sketchy ethnic restaurant in the Atlanta airport

10 | Sing “The Star Spangled Banner” at the Super Bowl making sure to raise my finger to point when I “hit the high notes” (note: I can’t sing)

11 | Argue with an overly enthusiastic mother who feels powerful because somebody gave her a clipboard

12 | Cover my body with spray adhesive, roll in glitter, and offer myself up to the Mississippi mosquitos in July

13 | Post a photo of myself with my tongue out on Facebook

14 | Drink a tall glass of curdled milk after ingesting whatever was in that Tupperware container in the back of my refrigerator

15 | Touch everything in the pediatrician’s office – toys, doorknobs, magazines – without washing my hands or using Germ-Ex after

16 | Wear a leisure suit to all of my daughter’s ballgames without offering anyone an explanation

17 | Clean the port-o-potties after a Phish concert without gloves

18 | Balance my checkbook

19 | Star in a urinary incontinence commercial

20 | Trade in wifi for dial-up

21 | Go live on Facebook from my bathroom during a colon cleanse

22 | Parallel park

23 | Wear crocs

24 | Watch a marathon of Sarah McLachlan’s SPCA dog commercials with my sensitive nine-year-old daughter

25 | Go back to high school

Do not get me wrong, I would walk through fire for my son. That would be easier, actually, because at least then I would know the outcome.

See, there’s something about going into the IEP Meeting. You may be scared or intimidated, but you know exactly what your child needs.

You go to the meeting thinking you will be considered a part of the IEP Team, but that’s not always how it goes.
DO YOUR HOMEWORK
Yeah, I know you don’t want to hear this, but you’ve got more work to do.
Let me help.
Start by reading posts like this and this.
Then take a glance at the Individuals with Disabilities Education Act (IDEA) right here.
Many states have a Community Parent Resource Center (CPRC) that offers support and training to parents of children with disabilities. You can find yours here.
I also found a lot of useful information here. and here.
I know that millions of special needs parents struggle with IEP’s this time of year…April. Which is also Autism Awareness Month.
I want you to be aware that IEP meetings are not supposed to be painful.
I want you to be aware of your child’s rights.
I want you to speak up on behalf of those that do not speak.
Like my son, Nathan.
Strong people stand up for themselves, but stronger people stand up for others.-unknown

This article was previously published on wordtoyourmotherblog.com

How to Adapt Egg Hunts for a Child With Special Needs

As a mom to a son with cerebral palsy, here are the best ways I’ve found to tailor Easter to your special needs child. Bring on the bunnies.

Easter is coming.

Bring on the Peeps and Cadbury Eggs and pastel everything. Haul the Easter baskets out of the closet and empty them of last year’s debris. Buy the egg-dying kit and Google search every hunt in a 15-mile radius.

There’ll be a million…unless you’re the parent of a child with sensory or mobility issues.

Then your search field narrows (too crowded, too young, too loud, too inaccessible). I know. As a mom to a son with cerebral palsy, I’ve been there. No one wants to see their kid come back with an empty basket.

But it’s time to open Easter back up. It’s a celebration, after all, a rite of passage for spring and new life and new growth in the world and in your child. So, let’s embrace this sugar-crazed and candy-glazed holiday.

Here are the best ways to tailor Easter to your special needs child. Bring on the bunnies.

Home Hunt

No one ever said the hunt had to take place in a field, at a church, or the zoo. Why not bring the fun home?

Some of my favorite memories are of sneaking peeks out the window while my mom and older brother hid the tie-dyed eggs I’d only slightly botched in our yard. My brother assigned himself the job of “weirdest hider.” We once found eggs, weeks later, decomposing in the pool vents.

Sometimes the big, organized hunts can be too much. It’s chaotic and crowded and loud as well as a race. It favors the aggressive type. But hunting at home provides the same satisfaction of the search without the competition. There’s no chance that your basket will be empty in the end and you can take your time. One year, halfway through the hunt, my son decided he was over it. We picked up where we left off after his nap. It’s not like the eggs are going anywhere.

High Hunt

If you choose to host your own hunt, you get to customize your hiding locales to make it easier for your child (I’d avoid the pool vents). My son is in a wheelchair, so we hide eggs at eye level: in tree nooks and planters and perched on top of bushes. If your child has mobility issues, this brings the hunt to them. We’ve also hidden eggs in big buckets of plastic grass or rice so he can dig through it, like finding buried treasure. That one is also great for additional sensory stimulus (although I’m not sure how environmentally friendly that grass is, it looks like it might outlast global warming).

Indoor Hunt

Sensory issues come in all shapes and sizes and colors and sounds. April weather is iffy. Rain, wind, or even bright sun can ruin the fun if it is overwhelming. But no one says you have to hunt outside. If you’ve ever found Legos behind your fridge or crayons down air vents, you know there’s plenty of hiding places in your own home. Get creative: behind couches, on window sills, in bookcases, and in kitchen cabinets. It’s all fair game as long as you remember where you put them all. The smell of rotting eggs is not a sensory experiment anyone enjoys.

The Pat-Down

If your child’s mobility is limited enough to prevent them from going to the eggs, bring the eggs to them. This is also great for little kids who are still in crawl-mode. I’ve turned myself into the bird lady from Mary Poppins, adding layer upon layer of cardigans and hats and purses and then hidden eggs in every available pocket. Then I present myself for inspection. It’s an informal pat-down for contraband and it’s hilarious. Little hands everywhere. You’re going to need to sign over your personal space on this one, but it’s worth it and has the makings of a great home-movie.

Treasure Hunt

Possibly the hardest part about egg hunting is the competition. Even if you’re hunting at home, if you have multiple kids, this can quickly lead to the devolution of your household. They fight enough over the last push pop, let’s not add fuel to the fire. Hide clues in each egg and turn it into a treasure hunt. This way the kids are working as a team. It’ll be like Survivor – you have to form alliances or be kicked off the island. This is great for older kids too because it adds a little mental stimulus to the action.

Toys over Treats

Beating out both Halloween and Valentine’s Day, Easter takes the gold for highest candy-consumption of the year. I get it. I cannot pass a bunny-shaped Reese’s to save my life and I’m a sucker for every variety of M&M or jelly bean if you turn it pastel and put a baby chick on the front. But not all kids can eat, or handle, the sugar rush. I mean, if you think about it, marshmallow Peeps might not even be actual food.

If your child doesn’t tolerate sugar or unfamiliar textures, skip the candy. We’ve filled plastic eggs with Legos to create the greatest tower ever known to man when all the eggs were cracked. We’ve filled them with puzzle pieces, only to be completed if every egg was found. We’ve even filled them with magnet alphabet letters, to be lined up when all is said and done. A bonus for you is that you’ll know if you’ve got a rogue egg missing.

Easter Books

The best way I know how to get kids excited about anything is to read them a book about it. Books are like holiday eves, they exist to stir up excitement about what’s to come. They also help your child understand what the holiday is about. Here a few of the ones we love to read in the weeks approaching Easter:

The Country Bunny and Little Gold Shoes” by DuBose Heyward is feminism at its best. The country bunny gets to be THE Easter bunny despite the fact that she’s also mother to 21 little ones.

Happy Easter! Mouse” by Laura Numeroff is a must if you want to see the mouse who ate the cookie go on an egg hunt.

Llama Llama Easter Egg” by Anna Dewdney is great for toddlers and kids with difficulty reading as it’s written in easy rhymes and comes in the already familiar Llama Llama series.

Happy Easter Little Critter” by Mercer Mayer is pure nostalgia. Who doesn’t remember the Critter books?

The Easter Egg” by Jan Brett is so beautiful you might not want to let your kids touch it. Just Google the illustrations and you’ll see what I mean.

So, if you are the parent of a child with special needs or just want to shake things up a bit this Easter, try out a few of these ideas and start some family traditions that can grow with your kids. If Easter is about new beginnings, then you’re already on the right track.

How 20 Bucks and a Miter Saw Made My Life as a New Parent Easier

Here’s the problem: For able-bodied parents, getting a crib involves setting a budget and picking out a crib. But for me, cribs are a lot more complicated.

Finding out I was going to be a father was one of the greatest moments of my life. You probably recall how you felt: There was a tremendous sense of happiness, love, and pride.
Not too long after that initial euphoria faded though, it got replaced by something else. Not worry, necessarily. But suddenly, I felt like Homer Simpson, realizing he had a million things to do all at once. In nine months, there was going to be a baby in our apartment. And babies need stuff.
One of the biggest things they need is a crib. It’s the focal point (warning: language) of the nursery, and a place to sleep is pretty important.
Here’s the problem: For able-bodied parents, getting a crib involves setting a budget and picking out a crib. But for me, cribs are a lot more complicated. An able-bodied person can lean over the sides of a standard crib and pick up or put down a baby. I can not. I can stand, but I don’t have the balance or arm strength to stand while holding a baby.
When it comes to being a parent, it’s really important to me that I balance as much of the responsibilities as possible. So my first task as a father-to-be came into focus: Figure out the crib situation.
This turned out to be a lot harder than I thought it would be. Due to our family’s love of Will Ferrell movies, I assumed that cribs where the sides dropped down were still a thing, thus giving me easy access to the not-yet named baby Cora. Turns out, they’re not. That doesn’t mean those cribs aren’t still out there in the world. But if even the most recent models were considered unsafe, my wife Ashley and I didn’t want to chance it.
We turned to the Internet. Someone out there had to have a solution, because, as my wife is fond of saying, I am not the first person in a wheelchair to have a child. The problem is, most of the people who come up with these solutions aren’t forming companies and creating scalable solutions for society. They’re solving one person’s problem.
Despite that, we found PediaLift’s crib, which seemed to be exactly what we needed. Not only that, but we felt reassured knowing that a company was making the product.
Unfortunately, this was the only such company we found, and we were quoted a cost of more than $16,000 for the crib. That number is slightly less than what we wound up paying for a nearly new van four months later.
When you’re disabled, this is a depressingly common situation. So many solutions for daily living aren’t really “solutions” as they are “expensive things you can’t afford.” There wasn’t much point in going broke buying a crib and then having to live on Government cheese.
We realized we’d need go the DIY route. Well, not the “Y” part, because neither my wife or I could make the crib. We majored in Communications, for crying out loud. Thankfully, upstate New York is home to several colleges full of engineers who could make one. I emailed several engineering departments to see if they could help us.
Amazingly, one of the schools got back to us, and connected us with two professors, who seemed excited to help us modify a store-bought crib. Over the next several months, we emailed them about our needs, and they shared ideas. They came to our apartment to take measurements and make sketches. We bought a crib and sent it to their campus.
A few weeks later, we got an email from them – an email that mentioned lawyers. Right away, I knew this was not good. It turns out, these professors wouldn’t be able help us after all. It was a safety and liability issue, which wasn’t too surprising, given that a previous accessible crib solution had been deemed unsafe by the government.
I wasn’t mad at the professors, really. But I was angry.  It’s hard being a parent, but it’s really hard when you’re disabled and trying to do something as basic as find a crib for your newborn, and everywhere you go, you get turned away. I just wanted to take care of Cora. This was 2016. How is it possible that we didn’t have a realistic way for a parent in a wheelchair to use a crib?
I called Ashley. I yelled. I cried. My wife, being the amazing person she is, promised me everything would be okay. She told me that lots of babies can sleep in a rock ’n play or pack n’ play for months and that we had plenty of time to find a solution.
As usual, she was right. Not long after, Ashley mentioned the problems we’d had to her father. My father-in-law, Jim, is a do-it-yourself type of guy, and he promised us he’d help us find a solution.
When he came to visit us later that summer, he had one. Contrary to my more elaborate attempts that involved engineers or taking out a five-figure loan, Jim’s solution involved a miter saw and about 20 bucks spent at Home Depot. He planned to put a french door on Cora’s crib, secured with a deadbolt lock.
Turns out, like all first-time parents, I was far more nervous than I had to be. Even though it seemed like we were going to be thwarted at every turn, we had so many great people in our lives. A solution was never far away. Jim made the crib, and it works great.
This experience was eye-opening for me, however. We’ve come a long way when it comes to services for the disabled. But a ton of gaps remain, and many of them have to do with parenting.
If you’re disabled, I want you to know that, even though it can be frustrating at times, there are solutions to your parenting issues. If you’re able-bodied, I want you to think about the things you take for granted and realize there’s a population out there who could use a helping hand. If we work together, we can make parenting less scary for them.
This piece was previously published on Patrick’s Blog Parenting on Wheels.