All posts by jill.rosamilia

Breaking Down Surgery

Parents are protective. That’s their job. So what happens when your child needs surgery? Not just once, but over and over again. Parents certainly understand the need, each and every time, but it sure doesn’t make the moment any easier.

Imagine knowing you can’t fully protect your child. Imagine the difficult decisions you need to make. Imagine the strength needed to keep going on and always being there.

That’s what this week’s Speechless episode is all about. The DiMeo family, as JJ gets surgery. This moment is something many people in the disabilities community know too much about.

However, there are parts of surgery we should know more about. So this week CPF introduces you to two of our close friends: Drs. Roye and Hyman. Both are orthopedic surgeons, who can explain some of the intricacies of hip and back surgery – in language we can all understand. Surgery never ever gets any easier, but understanding the process can help.

Breaking Down Surgery

Parents are protective. That’s their job. So what happens when your child needs surgery? Not just once, but over and over again. Parents certainly understand the need, each and every time, but it sure doesn’t make the moment any easier.

Imagine knowing you can’t fully protect your child. Imagine the difficult decisions you need to make. Imagine the strength needed to keep going on and always being there.

That’s what this week’s Speechless episode is all about. The DiMeo family, as JJ gets surgery. This moment is something many people in the disabilities community know too much about.

However, there are parts of surgery we should know more about. So this week CPF introduces you to two of our close friends: Drs. Roye and Hyman. Both are orthopedic surgeons, who can explain some of the intricacies of hip and back surgery – in language we can all understand. Surgery never ever gets any easier, but understanding the process can help.

Breaking Down Surgery

Parents are protective. That’s their job. So what happens when your child needs surgery? Not just once, but over and over again. Parents certainly understand the need, each and every time, but it sure doesn’t make the moment any easier.

Imagine knowing you can’t fully protect your child. Imagine the difficult decisions you need to make. Imagine the strength needed to keep going on and always being there.

That’s what this week’s Speechless episode is all about. The DiMeo family, as JJ gets surgery. This moment is something many people in the disabilities community know too much about.

However, there are parts of surgery we should know more about. So this week CPF introduces you to two of our close friends: Drs. Roye and Hyman. Both are orthopedic surgeons, who can explain some of the intricacies of hip and back surgery – in language we can all understand. Surgery never ever gets any easier, but understanding the process can help.

CP & The Body

Speechless just keeps covering more topics. And that means the series keeps bringing up interesting questions. Like just how does the body with CP work? How can we best understand it? And how can we best support people with CP to achieve their goals – whether that is participating more actively in sports, or just being able to get around with less pain and challenge.

We hope you enjoy this week’s videos, where you’ll learn about the Gross Motor Classification system – the way doctors best define the nature of an individual’s CP – and about Gait Analysis, which is the latest and greatest in evaluating a person’s movement. And don’t forget to check out this great sled hockey story about our friends in the Wheelchair Sports Federation’s New York Sled Rangers.

CP & The Body

Speechless just keeps covering more topics. And that means the series keeps bringing up interesting questions. Like just how does the body with CP work? How can we best understand it? And how can we best support people with CP to achieve their goals – whether that is participating more actively in sports, or just being able to get around with less pain and challenge.

We hope you enjoy this week’s videos, where you’ll learn about the Gross Motor Classification system – the way doctors best define the nature of an individual’s CP – and about Gait Analysis, which is the latest and greatest in evaluating a person’s movement. And don’t forget to check out this great sled hockey story about our friends in the Wheelchair Sports Federation’s New York Sled Rangers.

The Creative Spirit

Given the many physical challenges associated with Cerebral Palsy, it’s often difficult to stay mindful of a person’s artistic and creative needs. When many individuals are non-verbal, it can also be hard to remember the importance of finding one’s voice. This week’s episode of Speechless brings wonderful insights and innovative answers to this conversation.

As we do every week, we support that conversation with some wonderful videos by our experts. So enjoy Dr. Joseph Dutkowsky’s passionate thoughts on artistic expression and Dr. Ted Conway’s thoughts on a perhaps quite distant future when thought can actually become speech.

All the best for the holidays. We’ll be putting out some special videos over these few weeks. And our experts will be back on January 4th.

Happy Holidays from all of us at CPF!

The Creative Spirit

Given the many physical challenges associated with Cerebral Palsy, it’s often difficult to stay mindful of a person’s artistic and creative needs. When many individuals are non-verbal, it can also be hard to remember the importance of finding one’s voice. This week’s episode of Speechless brings wonderful insights and innovative answers to this conversation.

As we do every week, we support that conversation with some wonderful videos by our experts. So enjoy Dr. Joseph Dutkowsky’s passionate thoughts on artistic expression and Dr. Ted Conway’s thoughts on a perhaps quite distant future when thought can actually become speech.

All the best for the holidays. We’ll be putting out some special videos over these few weeks. And our experts will be back on January 4th.

Happy Holidays from all of us at CPF!

CP: The Early Years

There are many parts of the human experience that we all share. But the specificity of growing up with a disability just isn’t one of them. Which is why it can be a bit disorienting to be a parent trying to raise a child with CP and do your best. The question of “how much do we understand another person?” is profound in any case, but perhaps it’s just a bit more so when your child has physical challenges that you don’t.

So as the DiMeo’s take a road trip this week, we invite you on a parallel trip. We know you’ll appreciate the valuable insights of Dr. Warschausky and Rice as they share their knowledge and experience in the specific physical and challenges of growing up as a child with CP.

Happy New Year to all our friends in the CP community. And to our friends at Speechless. So glad to be back.

CP: The Early Years

There are many parts of the human experience that we all share. But the specificity of growing up with a disability just isn’t one of them. Which is why it can be a bit disorienting to be a parent trying to raise a child with CP and do your best. The question of “how much do we understand another person?” is profound in any case, but perhaps it’s just a bit more so when your child has physical challenges that you don’t.

So as the DiMeo’s take a road trip this week, we invite you on a parallel trip. We know you’ll appreciate the valuable insights of Dr. Warschausky and Rice as they share their knowledge and experience in the specific physical and challenges of growing up as a child with CP.

Happy New Year to all our friends in the CP community. And to our friends at Speechless. So glad to be back.

See Me, CP & All

If you ask people with disabilities about forming relationships, many will tell you that the biggest challenge is that the world just can’t see them as they are.

In fact, one of life’s great journeys is learning to see things with more than our eyes, and learning to appreciate the world more fully with all our senses and our full spirit.

This week, our friends at Speechless and our experts tackle these issue head-on. We hope you’ll enjoy watching Dr. James Rice, who finishes up his three part series on the pre-adult years of people with CP, and the dynamic Mo Buti, who offers additional insights on how we can all better understand and build great relationships that expand our mind and world.

Question to Micah: What has the cast learned from you?

See Me, CP & All

If you ask people with disabilities about forming relationships, many will tell you that the biggest challenge is that the world just can’t see them as they are.

In fact, one of life’s great journeys is learning to see things with more than our eyes, and learning to appreciate the world more fully with all our senses and our full spirit.

This week, our friends at Speechless and our experts tackle these issue head-on. We hope you’ll enjoy watching Dr. James Rice, who finishes up his three part series on the pre-adult years of people with CP, and the dynamic Mo Buti, who offers additional insights on how we can all better understand and build great relationships that expand our mind and world.

Question to Micah: What has the cast learned from you?

Drooling: Causes & Treatment

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CPF is the official partner of ABC's hit sitcom, Speechless. After each episode, we release expert videos about cerebral palsy from the most prominent doctors, specialists, and advocates from around the world.

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Finding Your Passion

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CPF is the official partner of ABC's hit sitcom, Speechless. After each episode, we release expert videos about cerebral palsy from the most prominent doctors, specialists, and advocates from around the world.

Sign up today to get exclusive video content.

Unlocking Your Inner Confidence

Everyone feels like an outsider sometimes. We all have triggers which rile us up every time we hear that same…. thing…. about…. ourselves. Everyone has moments when they just want to get away from the people who don’t understand them – and only stop running if they find that world where they fit in.

And, yes, these things are also harder in the world of disabilities.

Getting someone to see you for the person you are and to look past things which feel dissimilar should be so easy, but if we are honest with ourselves, it’s not.

In this episode of Speechless, JJ finds himself in an iconic moment: Prom Night. With usual bravery, Speechless shares how tough and confusing these moments can be. It also shares the hopes which all of us will always chase after.

To help in that chase, CPF introduces you to two new friends: Dr. Heakyung Kim, who talks about social and medical issues around drooling, and Dan Herlihy, who talks about finding the things you love to do.

Enjoy tonight’s fantastic and poignant episode, P-P-PROM NIGHT. And, of course, save your last dance for CPF.

Unlocking Your Inner Confidence

Everyone feels like an outsider sometimes. We all have triggers which rile us up every time we hear that same…. thing…. about…. ourselves. Everyone has moments when they just want to get away from the people who don’t understand them – and only stop running if they find that world where they fit in.

And, yes, these things are also harder in the world of disabilities.

Getting someone to see you for the person you are and to look past things which feel dissimilar should be so easy, but if we are honest with ourselves, it’s not.

In this episode of Speechless, JJ finds himself in an iconic moment: Prom Night. With usual bravery, Speechless shares how tough and confusing these moments can be. It also shares the hopes which all of us will always chase after.

To help in that chase, CPF introduces you to two new friends: Dr. Heakyung Kim, who talks about social and medical issues around drooling, and Dan Herlihy, who talks about finding the things you love to do.

Enjoy tonight’s fantastic and poignant episode, P-P-PROM NIGHT. And, of course, save your last dance for CPF.

Shocking Realities of Spring When You Have a Child with CP

Springtime in our neighborhood seems like a Disney movie, minus the princesses unless you count us ravishing suburban moms. First the daffodils burst into bloom, then the tulips. The grass turns from brown to Technicolor green. The birds chirp away and soon poop on our deck. (Oh, wait, not a Disney movie.)

Spring is also the time when I ponder how Max is budding…or isn’t. It’s a moment of reckoning for me, in many ways.

Some people have seasonal allergies. I suffer from seasonal realities.

For one, the children and teens in our neighborhood come out of hibernation. I see how much they’ve matured, and what new things they’re up to. That baby is now talking up a storm. That kid who was a toddler last summer is now zooming along on a kiddie scooter, something Max can’t yet do. The teen boys bounce en masse on a trampoline, which Max couldn’t handle without me holding his hands (the last thing any teen boy would want).

I’m mostly at the point in my life when I no longer compare Max to his peers, something I did compulsively when he was young. It did neither of us any good. But the explosion of progress I notice every spring is an annual shock to my system.

In general, Max’s physical gains are coming more slowly now. Although he is capable of walking stairs upright, he still prefers to clamber up on his hands and knees. He hasn’t made notable fine-motor skill advances. In fact, one of his OTs recently told me that she didn’t feel there was much more she could do to help him, and is recommending we do an intensive neurosensorimotor reflex integration program instead of seeing her.

This spring brought the added challenge of a high-school search. I tried and tried to find a public school with an integrated program. Max has thrived in a school for students with special needs all these years, but I thought a population with a variety of abilities would best prepare him for the real world. He got flat-out turned away from one school that said they couldn’t accommodate him academically (yes, that’s legal) and there were no other programs that fit his needs. I had to come to terms with that. He’ll be heading to an excellent school for students with disabilities but still I felt like I failed him.

Max’s IEP happens in spring, too. As any parent of a child with disabilities knows, this can be a sobering process on many levels, especially because you are forced to confront the “nots”: “Max does not use complete sentences to identify the main idea in a book…. Max does not cognitively think through the problem to check his answer…. Max does not write or verbally initiate writing creative pieces such as a nonfiction story.”

I hate the nots. Forget you, nots.

But I can’t.

Each year, as enchantment unfolds outside, I’m going through inner turmoil about my beloved boy and his future.

Ah, spring.

Replanting the positives helps my perspective. That’s something I’ve learned over the years. While I recently sorted through the shirts, shorts and swimsuits Max has outgrown, I considered some other growth spurts he’s had this year. He went to a prom; learned to program my phone calendar (and scheduled a visit to Disney World); started to appreciate Saturday Night Live (thanks, Alec Baldwin!); and wheeled his baby brother around in a stroller on his own. He even walked across The Brooklyn Bridge, a feat that once again made me think: If only those gloom-and-doom NICU doctors could see him now.

Standing in Max’s room, the pangs of gratitude and sadness and anxiety all swirl together, an emo mix as familiar as the scent of new grass on our lawn.

-Ellen Seidman, Love That Max

Setting Goals in the Classroom

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CPF is the official partner of ABC's hit sitcom, Speechless. After each episode, we release expert videos about cerebral palsy from the most prominent doctors, specialists, and advocates from around the world.

Sign up today to get exclusive video content.

Gaining Independence

This week’s Speechless episode is extra special because not just one, but two of our ambassadors will be on it! Not only Micah Fowler, but Zach Anner in one episode. Wow! Just when we thought we couldn’t possibly be bigger fans of the show.

Zach, playing Lee, enters the life of the DiMeo’s to guide JJ in his quest for independence with some pretty powerful advice. Don’t miss the chance to see this dynamic duo bring us not only their incredible talent, but some pretty incredible interactions.

But they’re not the only CPF besties who can help explain the needs and supports around the broad goals of gaining independence. So we’re also sharing a video from expert Kelly Fonner, who talks about goals you can help your child set in the classroom. And Mike Marotta tells you about the remarkable world of accessibility features already built into products you own. To round it out we have Dr. Seth Warchausky getting back to the foundations for gaining independence.

Gaining Independence

This week’s Speechless episode is extra special because not just one, but two of our ambassadors will be on it! Not only Micah Fowler, but Zach Anner in one episode. Wow! Just when we thought we couldn’t possibly be bigger fans of the show.

Zach, playing Lee, enters the life of the DiMeo’s to guide JJ in his quest for independence with some pretty powerful advice. Don’t miss the chance to see this dynamic duo bring us not only their incredible talent, but some pretty incredible interactions.

But they’re not the only CPF besties who can help explain the needs and supports around the broad goals of gaining independence. So we’re also sharing a video from expert Kelly Fonner, who talks about goals you can help your child set in the classroom. And Mike Marotta tells you about the remarkable world of accessibility features already built into products you own. To round it out we have Dr. Seth Warchausky getting back to the foundations for gaining independence.

Gaining Independence

Everyone feels like an outsider sometimes. We all have triggers which rile us up every time we hear that same…. thing…. about…. ourselves. Everyone has moments when they just want to get away from the people who don’t understand them – and only stop running if they find that world where they fit in.

And, yes, these things are also harder in the world of disabilities.

Getting someone to see you for the person you are and to look past things which feel dissimilar should be so easy, but if we are honest with ourselves, it’s not.

In this episode of Speechless, JJ finds himself in an iconic moment: Prom Night. With usual bravery, Speechless shares how tough and confusing these moments can be. It also shares the hopes which all of us will always chase after.

To help in that chase, CPF introduces you to two new friends: Dr. Heakyung Kim, who talks about social and medical issues around drooling, and Dan Herlihy, who talks about finding the things you love to do.

Enjoy tonight’s fantastic and poignant episode, P-P-PROM NIGHT. And, of course, save your last dance for CPF.

Accessibility Features

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CPF is the official partner of ABC's hit sitcom, Speechless. After each episode, we release expert videos about cerebral palsy from the most prominent doctors, specialists, and advocates from around the world.

Sign up today to get exclusive video content.

The Least Dangerous Assumption

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CPF is the official partner of ABC's hit sitcom, Speechless. After each episode, we release expert videos about cerebral palsy from the most prominent doctors, specialists, and advocates from around the world.

Sign up today to get exclusive video content.

Let’s Get Social

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CPF is the official partner of ABC's hit sitcom, Speechless. After each episode, we release expert videos about cerebral palsy from the most prominent doctors, specialists, and advocates from around the world.

Sign up today to get exclusive video content.

The Neuroscience of Learning

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CPF is the official partner of ABC's hit sitcom, Speechless. After each episode, we release expert videos about cerebral palsy from the most prominent doctors, specialists, and advocates from around the world.

Sign up today to get exclusive video content.