Archive for the ‘ Special Needs Parenting ’ Category

Wishing You Naps In The New Year!

Wednesday, January 1st, 2014

I have one running fantasy in my life, and it does not involve my husband, a larger home, chocolate cake or exotic travel.

It involves me, a bed and a nap.

I want one. Bad.

It’s not just finding the time to take the nap, which is tricky enough when you have two kids. It’s the act of letting yourself, when there is so much other stuff you could be doing at home—the laundry, the bills, the broken stuff around the house that needs tending to, the book club book you have to finish by tonight (too bad you haven’t started it yet). There are Sundays when I literally start thinking about taking a nap soon after I wake up. Inevitably, I never get around to it, foiled once again by an endless to-do list.

I crave naps both because I’m perpetually sleep deprived and because I love the comfort of them. There is something deliciously decadent about snuggling under a fluffy comforter as rays of winter sun shine through your window. Assuming you have locked your bedroom door, so nap thieves (aka kids) can’t break in.

I think I need a to-snooze list—reminders of why I should be taking that nap. Such as:

• I’ll feel happier if I take a nap.

• I’ll look better if I take a nap (beauty sleep is no cliché).

• Just one nap can have restorative powers that last for days.

• My family will realize they can actually survive without me.

• Life’s too short not to indulge in a free luxury like this.

Napping Day, an unofficial holiday created by a former Boston University people to help people adjust to Daylight Savings Time, happens in March. I’m already 100 percent sure I’m too busy that day to celebrate it. But then, I’m always going to have that excuse. So I’m testing out my nap resolve this afternoon; January 1 is the unofficial laziest day of the whole year. If I can’t pull off a nap today, then there may be no hope for the rest of the year.

Here’s wishing you naps in 2014, too.

From my other blog:

We had entirely too much fun at the doctor’s office

How not to pack for Disneyland

Those little big-deal accomplishments

Image of woman taking a nap via Shutterstock

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7 Ways To Entertain Kids With Special Needs Over Winter Break

Thursday, December 26th, 2013

Winter breaks are rarely a vacation for parents, but they can be even harder on ones who have kids with special needs. Children can be thrown by the lack of their familiar school schedule. Meanwhile, there’s that age-old question: What can you do? I threw out the question on Facebook to special needs parents; here, their reality-checked ideas.

Pick up a new version of a familiar play fave. “Right now, our Aspie is into Legos so we are getting him a big set and plan on building it together.”—Molly W.

Find a fun, accommodating space. “Our local indoor play space NEST Philadelphia has discounted winter rates for classes and membership. We signed up for class with our wonderful instructor, who has adapted class for my autistic son without my asking. We need to get out of the house, but it’s so important to escape to a place where my kids feel safe, supported and competent.”—Anna P.

Make a schedule. “I plan a fun activity for each day (bouncy place, indoor swimming, train/trolley rides, etc.). I don’t share the schedule, though, until the morning in case it snows too much and we can’t get there. I also let my little one control the time we leave or where we have lunch (or at home or out) as often as possible.”—Ilyssa R.

Hit the dollar bin. “Collect a bunch of dollar items from the bins at Target. When boredom strikes, pull out one of the new items.”—Laura F.

Over-plan! “We’re north, so we sled and play in snow, go for day trips or overnights, play games, cook and eat all our favorite foods, and have family and friends over my son knows. He just wants to be busy.”—Rachel P.

Build up excitement. “Try to plan one activity or ‘moment’ for them to get excited about. I usually make a list with the kids.”—Valerie M.

There’s always IKEA. “We go and let my kids jump on all the couches and beds on display. Then we eat at the restaurant and go home.”—Melissa M.

From my other blog:

We had entirely too much fun at the doctor’s office

How not to pack for Disneyland

Those little big-deal accomplishments


Image of child jumping on bed via Shutterstock

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More About The Girl Who Signed Her School Concert For Her Deaf Parents

Friday, December 20th, 2013

Kindergartner Claire Koch of Clearwater, Florida, wanted her mom and dad to fully enjoy her holiday concert. So she did one thing: She signed it for them. Both her parents are deaf. The video her mom, Lori, posted on YouTube has gone viral worldwide.

The signing wasn’t planned; Claire, 5, just decided to do it. “We don’t use Claire to interpret for us—she did it because that’s how she communicates with us,” says Lori. She uploaded the video on the heels of the Nelson Mandela funeral scandal, in which a so-called deaf “interpreter” signed gibberish while standing with global leaders. (Yesterday, word came out that he’d been admitted to a psychiatric ward.)

“Claire’s video put a positive highlight on a bad experience,” Lori says. Marlee Matlin retweeted it with the words, “This is too cute. Can you spot the child who has deaf parents?”

Claire’s become somewhat of a celebrity at her school. “Some fifth-graders came up to her and introduced themselves by finger-spelling their names in sign language,” says Lori. “She was really inspired by that.”

From my other blog:

We had entirely too much fun at the doctor’s office

How not to pack for Disneyland

Those little big-deal accomplishments

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Describing Disability: If You Use These Terms, Think Again

Tuesday, December 17th, 2013

These are some descriptions that regularly come up in my Google feed:


“Cerebral palsy sufferer”

“She suffers from Down syndrome”

“Cerebral palsy victim”

Before I had a kid with special needs, I would have read right over the words. Now that I have Max, who has cerebral palsy, they make me cringe. Words like “victim” and “sufferer” depict disability in a negative way, making it seem tragic for a person to have them. These are words that make you feel sorry for kids like my son, which is a shame because what he needs is parity, not pity.

I have gotten flack for speaking out against the word “retard,” a word that’s become a slur. I am sure people will say I’m being uptight and overly p.c., too, for pointing out how this wording victimizes those with disabilities. But words matter, especially when kids grow up hearing adults use them. Words shape our perceptions of people with disabilities, and how welcome we make them feel in this world.

The other day, a guy emailed me about a group he’s involved with that pairs athletes with disabilities and ones without them (described as “able-bodied”) for endurance events. I pointed out to him that able-bodied is a disparaging choice of words. His response was to reassure me that even though the wording may “appear as a negative” they meant nothing but “the most positive things” for all involved. I had no question about that—I just didn’t understand what the big deal is to change the wording.

My son, and kids like him, could use all the positive reinforcement they can get in this world. At times, it’s hard enough for them to fit in. I think I speak for many parents when I say I’d sure appreciate people—especially the media—using non-loaded wording to describe disabilities.

Instead of “he suffers from cerebral palsy” or “he’s a cerebral palsy sufferer,”  just say “he has cerebral palsy.”

Instead of “wheelchair bound,” try “wheelchair user.”

Instead of “able-bodied” or “normal” go with “non-disabled person.”

See? It’s not that hard, right?

Think about it.


From my other blog:

Those little big-deal accomplishments

How much do therapies cost for your chip with special needs?

Max is driving and maybe someday, for real

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When Laws Are Made To Be Broken For Kids With Special Needs

Tuesday, December 10th, 2013

J.J. Hart, a three-year-old boy with autism, used to sit around staring into space a lot. He barely spoke, and had temper tantrums. Then his dad started looking into animal therapy for kids with autism. He bought a few chickens for J.J., who dubbed them “ducks.”  These days, his mother has said, “He’s able to communicate much better. And it all has to do with the chickens. He plays with them. He cuddles with them. And he runs around the yard with them…. It’s made a tremendous difference.”

A year ago the town where the Harts live, DeBary, started a one-year trial program that allowed residents to keep chickens in backyard coops. Now the city council has announced the program is ending; J.J. will be forced to give up his chickens by December 31. As council member Nick Koval said, “It’s unfortunate, and I sympathize. But we spend a lot of time and money establishing codes and ordinances for the protection of the citizens and taxpayers of this community. And I believe that they [chickens] belong in agricultural areas.

While it’s more common to use horses and dogs in therapies, J.J. has a connection with the chickens. Given that kids with autism are very sensitive to change, getting rid of the chickens could be traumatic. J.J.’s parents have hired a lawyer to get the council’s decision reversed.

Perhaps this story is hard to understand if you don’t have a child with autism or other special needs. Perhaps the pre-parent me would have wondered what the big deal was to give up the chickens. But now, I understand what it’s like to do anything and everything to help your child with special needs thrive, whether it’s chickens or alternative forms of therapies, as we’ve tried over the years. When you find something that works, it can seem downright miraculous.

Stories like this have cropped up over the years. Last January, a boy with Down syndrome in Coral Springs, Florida, who had a house-trained therapy pig was granted the right to keep him after officials threatened to fine his mother to $500 a day for violating local ordinances. In Lexington, Kentucky, parents of a three-year-old with cerebral palsy built a playhouse where he could get physical therapy; the local Homeowners Association asked them to take it down. Last year, because of their case, a House committee nullified deed restrictions on small outdoor structures deemed medically necessary for kids 12 and young. And in Spring, Texas, in 2012 a local family won the right to keep a baby kangaroo to help their 16-year-old daughter, who has Down syndrome.

My heart goes out to J.J. and his parents; I hope they win their fight. If J.J. and his chickens lived in our neighborhood, if it were a matter of enabling a child, then to me there would be no question: Let the boy have his chickens. It’s the humane thing to do. The mayor of DeBary, Bob Garcia, agrees. As he’s said of the chicken program, which he hoped to extend until 2015, “It had so many benefits for this child. And it would have shown that we’re a community that is compassionate and understanding.”

Image: Facebook/Save JJ Hart’s “Ducks”

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