Amy Schumer’s dating advice? Take the wheelchair test

One thing I really like about NPR’s Fresh Air show is that whenever Terry Gross interviews a celebrity, she manages to come up with a question the star has never been asked before. Last week Fresh Air re-broadcast a show Terry Gross did with Comedy Central’s Amy Schumer, and in the interview, Terry Gross asked the comedienne about her father.

Amy Schumer was 12 years old when her father was diagnosed with multiple sclerosis. In the interview, she described MS as a quiet disease that was hard for her to understand at the time. “He would be fine but then all of a sudden he would be moving really slowly, and he would be in a lot of pain, but could still do the day-to-day stuff,” she said. “And so I really didn’t understand it very much.” Her father has been using a wheelchair for the past seven years and requires care around the clock now.

From the transcript:
GROSS: How did that change your life, having a father who had a degenerative chronic illness?
SCHUMER: I think it has…in my relationships. When I’m dating someone I think, would I want to push their wheelchair? Would this guy push my wheelchair? My mind goes there if I’ve been dating somebody for a year or two, and I don’t think that happens to people unless they’ve taken care of a sick relative.

She wasn’t trying to be funny here, trust me. She was dead serious. And if you ask me? Very insightful.

 

Why are we named Easter Seals?

Easter weekend gave me plenty of opportunities to explain to people how an organization that helps people with disabilities and special needs live better lives ended up with the name Easter Seals.

When we started in 1919, we were called the National Society for Crippled Children. But then, eighty years ago, in the spring of 1934, we launched our first Easter “seals” campaign to raise money for our services. The seals were stickers about the same size as postage stamps, and donors placed them on envelopes and letters to show their support.

The public support for the seals campaign was overwhelming. It triggered a nationwide expansion and a swell of grassroots efforts on behalf of people with disabilities, and by 1967 the Easter “seal” was so well recognized that we formally adopted the name. We’ve been “Easter Seals” ever since.

So there you have it.

 

4 gift-buying tips for special needs kids

Ryan Judd’s guest post about music combined with Ellen Seidman’s guest post on playing with kids got me nostalgic for life with our son Gus while he was growing up. Gus was born with physical and developmental disabilities, and when he was little, friends and family members who wanted to give him a gift or a toy were never quite sure what to buy.That’s Gus with his Grandpa when he was little. Gus is 27 years old now. (The photo to the right is Gus with his Grandpa when he was little.)

Gus is 27 years old now. I tried my best to convince them that picking out a gift for a child with special needs is not as hard as they might think—children with special needs have interests, just like everyone else.

Trains? Wheels? Springs? Maybe they like bugs. Or maps. People sometimes think that when buying for a child with special needs, you have to find something unique to children with disabilities, but that’s not always necessary. Here are a few shopping tips:

  • Before choosing a gift for a child with special needs, ask him or her what he likes, and, in some cases, get ready to hear an earful!
  • If you can’t ask the child directly, contact the parents—most are happy to let you know what their child is particularly fond of.
  • Siblings can also be a great help in telling you what their brother or sister with special needs likes—and what they don’t like.
  • When shopping for children with special needs, you might try thinking out of the box—consider shopping at hardware, music, or office supply stores.

When Gus was growing up, friends and family ended up buying most of his gifts at Radio Shack—Gus loved cassette tapes and handheld tape recorders. He’d take the recorder in one hand, place it near his ear, transfer it to the other hand, place it near that ear, transfer it to the other hand, place it near that ear … you get the picture.

Occupational therapists liked the way it increased his hand-eye coordination. Speech therapists loved how Gus learned to express his preference for certain music and sounds. Physical therapists liked playing a tape and placing his recorder across the room to motivate Gus to amble over there to find his music. We liked his cassette recorder, too. Know why? Because Gus did!

Please consider leaving any gift and gift-buying tips for special needs kids in the comment section here—I’m all ears!

 

How we can teach kids compassion

Nine-year-old Ava Sendelbach’s little brother Joey and little sister Sophia have been receiving occupational therapy services at Easter Seals DuPage and the Fox Valley region since they were 3 years old. This guest post by their mother, Terri Sendelbach, shows us that her youngest two aren’t the only ones who are learning at Easter Seals –Ava is, too.

Just a boy

by Terri Sendelbach

Ava, Joey and Sophia Sendelbach

I sat down to help Ava with her homework the other day, but before opening her math book, she said that she wanted to tell me something. Here was our conversation:

  • Ava: Mom, there is a picture in my book where somebody—and NOT me—wrote something that wasn’t nice over a picture of a boy. It was mean, so I erased it. Do you want to see it?
  • Me: Yes, I would like to see it.

There was a picture of a young boy sitting at a table. He had a huge smile on his face. It was clear to me that this boy had some sort of physical disability. Above his picture you could make out the erased word c-r-e-e-p-y with an arrow pointing to his face.

  • Ava: I don’t know why someone would write that, he is just a boy.

Just a boy. You see, for Ava, it is commonplace to see a person with a disability. That’s because ever since she was 4 years old, she’s been around people with all types of disabilities. So to her, this boy looked no different than other boys she knows.

I was so proud of her in that moment that I could’ve burst. But I controlled myself, refrained from bursting, and we started her homework.

Ava and all my kids are fortunate to be exposed to all types of people with all types of disabilities at Easter Seals DuPage and the Fox Valley Region. They know that it takes all kinds of people to make this world go around and around. I’d like to say that my husband Joe and I are responsible for this awareness, but I have to give Easter Seals some (ok, a lot) of recognition.

Since that conversation with Ava I’ve been thinking a lot about compassion and tolerance and how it seems my children have copious amounts of both. Why? Was it something Joe and I did? Is it luck? Can you really teach compassion?

I think the answer to all those questions is yes. My children are compassionate and tolerant people because they were born with those traits and life has only built upon them and made them stronger. You can teach compassion, too, but not in the traditional sense. Our teaching is done by guidance.

Like all parents, Joe and I want our kids to be happy and considerate, compassionate, tolerant individuals. We don’t sit them down and tell them how to be happy or how to be compassionate. We show them by doing. Like when we are at Easter Seals, and a young girl who can’t talk is practicing to walk on the track. She walks right by us, and I tell her, “I just love your shoes!” In that moment, I don’t notice that my kids are there watching me interact with this young girl. They are, though. They are watching me. They watch me talk to her just the same as I would talk to someone who can talk and walk.

Or how about when we were at the grocery store and the cashier is a different color than us, or is wearing cultural clothing, like a burqa or a yamaka, for example. I wouldn’t behave any differently towards that cashier if it were my own aunt checking out our purchases. Well, I probably wouldn’t give them a hug or kiss like I would my aunt, but you get the picture!

Encouraging questions in that instant or in private would be a great learning opportunity for them. I would maybe start off asking, “Did you see that lady’s dress where it covered her whole body and you only saw her eyes? Do you know why she wears that? Here, lets google it and find out!” Once children learn the answer, it empowers them with knowledge. The next time they come across a woman in a burqa, they will know why she wears it and will probably not even think twice about it.

I always tell my children two things when we’re having important conversations:

  1. Always try your hardest.
  1. Just because you are different doesn’t make you better or worse than anyone else.

So that’s how Joe and I teach our children compassion and tolerance. We teach by doing. It is the way that works for our family. And so far so good. My children are compassionate, tolerant people, but they are not perfect. I am sure there have been instances where they could’ve shown someone (or even each other) more compassion. As long as they are trying their hardest at whatever they are doing and know they are no better or worse than anyone else, I am one proud parent who will try her hardest to refrain from bursting.

Related Content and Resources on Easterseals.com

 

Autism and controversy

I have worked in the field of autism for over 30 years. Controversy has always been a part of the landscape in my profession. There is significant debate about the cause of autism. Professionals engage in heated discussions about the most effective treatment. Arguments rage about whether autism prevalence is really increasing or if we are just better at diagnosing. Discord is common in the autism community, and Chili’s Restaurant experienced this discord with their recent Give Back Event.

There are many things that are known about autism:

I feel fortunate that I work for Easter Seals, an organization that focuses on delivering quality services and supports to people with autism—like early intervention and family support.

Corporate relationships are important for nonprofit organizations. Easter Seals has many strong relationships with corporations, and the support we get from corporations is invaluable to the people with disabilities who are supported by Easter Seals.

CVS Caremark Charitable Trust funded professional development for five years, and now hundreds of children receive EIBI services from well-trained professionals. CVS Caremark has continued its financial support, assisting Easter Seals in launching our Make the First Five Count initiative dedicated to ensuring children in need are identified at the earliest age via a free developmental screening program.

Mass Mutual Financial Group supported our Living with Autism Study, which demonstrated the need for family support.

Chili’s did their best to address the controversy that they unwittingly stepped into. In a statement published on the Chili’s blog, they said, “While we remain committed to supporting the children and families affected by autism, we canceled Monday’s Give Back Event based on the feedback we heard from our guests.” I appreciate Chili’s intent. I am glad they listened to their guests, and I hope that their next effort promotes meaningful outcomes for individuals living with autism.

If this post interests you, you might also like:

 

Have your kids under age 5 been screened yet?

A study published in the Journal of Autism and Developmental Disorders reports that children with autism who come from minority backgrounds are more delayed than their Caucasian peers on the spectrum. Researchers at the Kennedy Krieger Institute in Baltimore assessed 84 toddlers with autism from a variety of ethnic backgrounds and found significant differences between white children and their non-white peers that spanned from language to communication and gross motor skills. Researchers say one likely reason for this delay is that in minority communities, symptoms go unnoticed longer.

Far too many infants and toddlers are being left behind—every year, we as a nation fail to identify more than one million children, all under the age of 5, who have a disability or are at risk for developmental delay, and many will never catch up.

Here at Easter Seals, we know young children with disabilities can succeed in school alongside their peers if they receive early intervention services—that’s why we encourage parents and caregivers nationwide to take the Ages & Stages Questionnaire. This health screening tool is available online and at no cost, and it helps parents and caregivers track a child’s development through age five.

After observing a child, parents and caregivers may take the online survey, and then download their child’s results to discuss with their pediatrician. The survey, which should be completed annually until the child reaches age 5, helps indicate if the child is on track to enter kindergarten.

The Ages & Stages Questionnaire also offers advice and support from Easter Seals if a child displays developmental delays. We can give every child an equal opportunity to learn and grow, but in order to do that, it’s best to get kids the help they need in the critical years before they turn 5.

 

7 ways to encourage play for kids with special needs

This post originally appeared on Ellen Seidman’s Love That Max blog, which she describes as “a blog about kids with special needs who kick butt.” We liked it so much we asked Ellen if we could share it here with our Easter Seals Blog readers. She generously said yes, and here it is.

7 ways to encourage play for kids with special needs

by Ellen Siedman

When Max was a tot, one of the biggest challenges I faced was helping him play. He wasn’t able to easily grasp toys or push buttons, so I’d enable him as best I could. Playing with toys is a fundamental right of childhood, and no way did I want Max to miss out.

For advice on enabling play for kids with fine-motor challenges, I hit up occupational therapist Ellen Martino, a pediatric occupational therapist in Stratford, Connecticut, with 25-plus years of experience. These are her top tips.

First up: Make sure your child is in a stable position.
“This is really important for a child who has challenges with fine-motor skills,” says Martino. “If a child has to exert energy to sit in position and work at keeping his trunk upright, it makes it difficult for him to use his hands to explore toys. You can have your child sit on the floor, positioned between your legs, or prop him up against a couch with rolled towels or cushions on either side.” When Max was a tot, I’d seat him on the floor tucked into the nursing pillow. “Older kids do better sitting at a kid’s table, with a chair that allows their feet to be flat on the floor,” notes Martino. “Some children may need an adaptive chair with arms to provide additional trunk support.”

Give a little massage.

“Kids who have fine-motor-skill issues don’t get all the sensory input other kids do when they’re touching, grabbing, holding and crawling,” says Martino. “So before play, it helps to ‘wake up’ their hands. An easy thing to do is hold your hand against your child’s hand, palm to palm. Then give some deep pressure, moving from the base to the fingers.”

Try a warm-up activity.

“Use something as simple as a small, soft squishy ball, squeaky rubber toy or even a bean bag to help get a child’s hands ready for play,” says Martino. “If a child’s hand is fisted, gently help him open it so he can hold the object, then help him squish or squeeze it. For a child with low-tone, try helping him to use his hands to push into the toy while it is on the table or floor, providing some resistance and weight bearing.” Another good get-going move: Take a medium-size ball, like the Froggy Kickball. Place the child’s open palms against it and help them to bang on the ball or push it.

Place toys in a vertical position.

This encourages visual attention and an upright posture and improves shoulder stability. “If you have a sturdy easel, you can put a puzzle on it. Or buy a little ledge, attach it to the wall of your playroom and rest puzzles or magnet boards on it,” suggests Martino. You can also place toys on a slant board on a table, or make your own; Martino suggests using an extra-wide three ring binder, and putting a piece of rubber drawer liner beneath it to keep from slipping.

Think beyond a toy’s “intended” use.

“It’s the process of the play—and the fun!—that’s key for all children, especially a child with fine-motor-skill challenges,” says Martino.” A child with limited fine-motor skills might get frustrated if, say, he can’t yet roll a ball and knock down pins in a bowling play set. But he might very well enjoy holding onto a pin and banging it on a rug. “That can help build his confidence,” says Martino. “He’s enjoying making a toy do what he wants it to.”

Remember, not all play has to be therapeutic.

“Parents of kids with special needs often feel pressure that play has to be somehow therapeutic,” says Martino. “What’s important to remember is that all types of play are important for children, no matter what they are doing. If a child is really into it, laughing and having fun, he may be moving around, exploring, gaining sensory input and working on balance and visual attention. Maybe he will use his affected hand more by trying to reach for, push against or lean on something. Play is a wonderful way to strengthen fine-motor skills, but most important is that a child is having fun and is successful.”

Involve your kid in clean-up.

As Martino says, “It gives them fine-motor practice, teaches them to sort, fosters independence, helps kids see a clear beginning and ending—and teaches them to help clean up!”

 

4 goals to the Watch Me Thrive program for all parents

President Obama’s most recent budget proposal includes a big priority on early education. His Preschool for All initiative was announced in 2013, and Congress was able to find some limited resources then to get it started. The president’s proposed budget builds on these modest resources as part of a larger effort to ensure young children enter kindergarten ready to succeed, and you can read a copy of our formal response to the President’s budget here.

But wait. There’s more! Just last week, the Administration announced another initiative: Watch Me Thrive. This effort has four goals:

  • celebrate child development milestones
  • promote universal screening
  • identify developmental delays in young children as soon as possible
  • enhance supports available to families that will help them facilitate their child’s development

Watch Me Thrive goes hand in hand with the Easter Seals Make the First Five Count program, which features the same screening tool that the Watch Me Thrive campaign highlights as the best: the Ages & Stages Questionnaire, available in both English and Spanish.

Its been a great couple of days for young kids. Stay tuned for more updates on our progress.

 

3 great songs to use with adaptive musical instruments

Music therapist Ryan Judd is back! In his previous guest post, Ryan shared three instruments that are easy to adapt for little hands. Today he gives blog readers some fun, easy-to-learn interactive songs you can play with those instruments.

Stomp, rattle and roll

by Ryan Judd, MA, MT-BC

The tambourine is one of my favorite kid-friendly instruments. If you slip a thick rubber band over a tambourine and pull it under a child’s shoe, they can join you in a song about kicking or stomping. Here’s an easy one for you, based on the song Old McDonald. Every time you sing “stomp, stomp here” or “kick, kick there,” stop and wait for the child to do this action before continuing the song.:

Old McDonald had a band, E-I-E-I-O,
and in his band he had a tambourine, E-I-E-I-O.
With a stomp, stomp here and a stomp, stomp there.
Here a stomp, there a stomp, everywhere a stomp, stomp.
Old McDonald had a band, E-I-E-I-O.

This song can also be used with a tambourine slipped onto a child’s wrist like a bracelet. If you are using the rubber band adaptation, the tambourine can be snugly attached to a child’s hand as you sing this song, just substitute the word “ring” or “jingle” for “stomp.” Example: “With a ring, ring here and a ring, ring there.”

The Old McDonald song with the tambourine can be a fun and motivating way to connect and bond with your child and work on motor skills at the same time. In addition, these activities can lift a child’s spirits and make them feel successful.

Along with tambourines, I also love using rhythm sticks and maracas with kids. Here’s an easy little jingle for the rhythm sticks that is based on the song “The Wheels on the Bus”.

The sticks in your hand go tap, tap, tap
Tap, tap, tap
Tap, tap, tap.
The sticks in your hand go tap, tap, tap
All through this song.

I don’t want to leave those maracas out! Here’s a tune based on “She’ll Be Coming ‘Round the Mountain” that you can use for maracas. You can substitute “He’ll” for “She’ll” if you are working with a boy:

She’ll be playing those maracas in this song. (rattle rattle)
She’ll be playing those maracas in this song. (rattle rattle)
She’ll be playing those maracas
She’ll be playing those maracas
She’ll be playing those maracas in this song. (rattle rattle)

You can take this even further and work on different motor movements by singing “She’ll be playing those maracas way up high” or “She’ll be playing those maracas side to side.”

There is so much you can do with some simple songs and simple instruments. Just make sure that you join in the fun and model the actions for your child. For more help, watch this video of me adapting and using musical instruments myself:

https://www.youtube.com/watch?v=BIjpqyQn0C8&feature=youtu.be

You might also consider signing up for my free newsletter for more ideas on how to use music in adaptive and therapeutic ways.

See Part 1 of this blog post about how to adapt 3 musical instruments for kids with and without disabilities.

 

The deadline to sign up for health care

That clock you hear ticking is marking the run up to the end of the first open enrollment period for the Affordable Care Act. It’s ticking fast! At the end of the day today, March 31, 2014, the initial opportunity to sign-up for a qualified health plan through the marketplace in each state will close unless there is a qualifying event.

Some people forget that some changes already took place when Obamacare was first signed into law in 2010. Since then, children with pre-existing conditions, like MOST of those served by Easter Seals, cannot be dropped from coverage. In addition, the law did great things for young adults under age 26, like Ben Trockman, the Easter Seals 2012 National Adult Representative, from Evansville, Indiana.

Ben is a 24-year-old college student who incurred a spinal cord injury in 2006 and has been able to retain quality benefits by remaining on the insurance plan of his parents. He is looking forward to his college graduation now so he can get his own professional life started in the public relations field.

These modest reforms that went into affect right away when the Affordable Health Care Act was signed have been life-changing for many of the families we serve, and ever since the bulk of the new protections provided by the Affordable Health Care Act became available in January, 2014, adults with pre-existing conditions can buy health insurance, too.

Wow!

Under the rules in 2013, practically no insurance companies would sell a plan to someone with a pre-existing condition. It didn’t matter if the person could afford the coverage, no one would sell him or her a plan.

We know there have been bumps in the Obamacare road, but already since January, many of the people we serve no longer need to have health insurance coverage, or lack thereof, dictate the major decisions of their lives. If you or someone you love is still uninsured, encourage them to go to www.healthcare.gov today and check it out!

Related Resources on Easterseals.com:

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