Category: Inclusion

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“Born to Eat”: Inclusion Starts with Baby’s First Bite

Sometimes the biggest barrier to inclusion for individuals with disabilities is their family.

For fear that their child will be hurt, parents can sometimes overcompensate and overprotect.

I’m guilty of this sometimes, even though I try really hard to have similar expectations for Troy as I have for my typical children. It’s human nature, I suppose.

But we must practice what we preach! If I want Troy to be included in our community, then I need to create equity and inclusion within our home.

Family meals are a simple way that I’ve created equity in our home.

Troy is expected to help set the table, sit with his family during meals, and help clear off and clean the table when we’re finished.

Seems like a simple routine, and he’s pretty proficient at this now. But believe me when I say it took YEARS of throwing food and Troy getting up and down to clean up the mess before he mastered this routine.

My approach to this routine all started with Baby Led Weaning. The new book, “Born to Eat,” creates a whole philosophy surrounding BLW and family-centered meals that really piqued my interest as a special needs mom.

May be you’ve heard of it, but don’t think it’s appropriate for children with disabilities. It does seem intimidating at face value:

  • When child shows readiness for solid foods, parent presents whole food options (that are appropriate in texture for an infant) that the rest of the family is already eating. (no time or money sent on baby food jars, or making your own baby purees)
  • Parent decides what, when, and where a child eats.
  • Child decides how much and if he/she wants to eat.

-Cue the worried parent-

Listen, I’ve been there.

We all worry that our child isn’t eating enough, but this philosophy is really about honoring self-regulation and self-reliance in your child. Two attributes that are so important to the success of individuals with Down syndrome.

The best part is “Born To Eat” takes a nonjudgmental approach. You can dive in, or just implement parts of baby-led weaning.

Read Related Post Here: Born to Eat Part 2: Benefits of Baby-Led Weaning for Babies with Feeding Issues

But what about oral motor issues, you ask? It’s true, many babies and children with Down syndrome have feeding issues.

“Born to Eat” author, Wendy Jo Peterson, says you should always consult your pediatrician before starting any solid foods with your child, but a whole foods approach may actually benefit a child with oral-motor sensory issues.

Most feeding experts that Wendy Jo works with feel that empowering a child early on to work on these skills is important, but all agree that this may not be appropriate for all infants all the time.

Every parent has to navigate these waters on their own and seek the support of feeding experts who truly understand a Baby-led feeding approach.

Dr. Katja Rowell is an excellent resource for parents who wish to try a baby-led approach, she was one of “Born To Eat’s” technical readers, and fully supports a BLW approach to feeding infants.

The American Speech-Language and Hearing Association also has a blog post on the benefits of BLW here.

Children often begin to develop picky eating habits early on. “By using varied textures and flavors early on infants (when they are most apt to be accepting to new things) can become acquainted with these flavors and textures.

“Picky eating to a degree is natural,” Wendy Jo explains.

Understanding the Division of Responsibility (coined by Ellyn Satter) can help every parent navigate these waters and learn how their own responses contribute to picky eating.

Read Related Post Here: Our Birth Story: Double the Blessing, Each One of a Kind

In the book, “Born To Eat” shares examples of positive language around the dinner table, and reminds parents that children have the right to what they choose to chew or not.

The less we react the less the table becomes a battleground. Food should not be a battleground or used as punishment or reward.

“Food only becomes an issue when we make it an issue,” author Wendy Jo Peterson explains.

Embracing a family-centered, whole-foods approach is a simple way to start on the path to self-regulation and self-reliance in our children with Down syndrome. Both of these attributes will serve them well in other parts of their life.

In Part 2 of this book review, I’ll talk to a Speech and Language Pathologist who will walk us through the specific benefits of a baby-led weaning approach and how to start on your child on solid foods.

Disclosure: I received no compensation, sponsoring, financial incentive, or other inducements to write this article

How have you taken a family-centered, whole foods approach to feeding your little one? I’d love to hear your food stories below!

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How to End Organ Transplantation Discrimination in Your State

Did you know that people with Down syndrome face significant barriers to life-saving organ transplants? I was shocked when I first heard that this was a “thing.” How could anyone decide one life is less worthy than another solely based on their disability?

That’s why six months ago I called my state representative, Niraj Antani, and asked him to draft a bill giving greater legal protections for life-saving organ transplants to people with disabilities. Ohio House Bill 332 was born, and recently went to the Ohio House Health Committee. You can read the bill here.

Autism Advocate, Jennifer Powers Alge, Representative Niraj Antani, and myself at the proponent hearing for Ohio H.B. 332

As the bill was being drafted I learned about a story of organ transplantation discrimination just north of where I live in Sidney, Ohio. Little Ellie’s mom was told shortly after she was born that Ellie couldn’t receive the heart transplant she desperately needed to stay alive because she has Down syndrome. Read her story below.

Read Related Post Here: Little Ellie is Denied the Heart She Needs

3-year-old Ellie

As soon as I connected with Ellie’s mom Jackie Ward, I knew she had to share Ellie’s story with Ohio legislators and the world. Ellie would be the change-maker! Jackie was hesitant to share at first, but over time she realized the impact Ellie’s story could have on the passage of H.B. 332. Yesterday, I was thrilled to walk the halls of the Ohio State House with Ellie and her family.

We testified in support of House Bill 332, and there wasn’t a dry eye in the committee room. I felt so privileged to give testimony in favor of Ellie and thousands of other people with disabilities that face barriers to life-saving health care. My speech  gave details that included the six other states that have passed similar legislation (Oregon, Pennsylvania, Maryland, California, New Jersey and Massachusetts). Two other states (Kansas and Delaware) are currently working on a bill in their state legislatures.

We also had a fellow advocate and Autism super-mom, Jennifer Power Alge, provide the perspective of families with loved ones with Autism. Down Syndrome Association of Central Ohio Executive Director, Kari Jones, gave insight into the amazing achievements of people with disabilities, and how all life is inherently worthy of life-saving health care. But by far, the star of the show was Ellie and her mom who told her story.

Read Related Post Here: Ending Organ Transplantation Discrimination

The Americans with Disabilities Act actually provides broad protections for individuals with disabilities, but there’s no specific protection for access to organ transplantation. In fact, a group of 30 Republican and Democratic U.S. Representatives signed a letter just last year to the Department of Health and Human Services asking them to issue federal guidance to protect individuals with disabilities against organ transplantation discrimination. Unfortunately, nothing came of that letter. That’s why states need to act.

If you’re interested in advocating for a similar bill in your state I would start with the related posts above, as well as the following toolkits: ASAN Organ Transplantation Toolkit and NDSS Organ Transplantation Toolkit

I would also encourage you to watch testimony from Ellie’s mom below, as well as an Oregon mom who’s non-verbal Autistic son was refused a heart transplant in Oregon and ended up leaving the state and getting the transplant done in California. Both are extremely moving and puts a human face on an otherwise dry bill. Watch the Oregon mom starting at 38 minutes and 51 seconds here.

Our bill received a warm reception from Ohio House Health Committee members, who were also shocked that this was a real “thing.” The committee moved to the next step in the process, an opponent hearing and then a vote. So far, there as been no public opposition from transplant centers or doctors. Really the bill is not an attack on either of these institutions. There’s no penalty clause in the bill, but it does allow families to seek legal recourse to secure an organ transplant if they feel their loved one has been discriminated against. It’s more about ensuring families know they have greater legal protection to help advocate for their loved one when they need it most.

I will keep you posted on our bill as it moves forward. What are your thoughts on this issue? I love to hear from my readers, so leave a comment below or send me a private email. 

 

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United Airlines Crew Kicks Eagle Scout with Down Syndrome Out of Exit Row Without Explanation

United Airlines crew allegedly decided with one look that George Mason LIFE grad and Eagle Scout, Sean Cross, was not able to sit in an exit row seat on a recent flight. That’s because the 25-year-old has Down syndrome.

Instead of presuming competence, or at least asking Cross if he was willing to assist in an evacuation, the flight attendant refused to talk or even look at the paying passenger.

Sean Cross, George Mason LIFE Graduate

As relayed by Sean’s mother, Brenda Cross, a flight attendant demanded that the Cross family give up their seats immediately, without explanation. When Sean’s father, Patrick, asked why, they were told “He can’t sit in the exit row.” When the flight attendant was asked to speak directly to Sean, the flight attendant would not look at or speak to Sean. Subsequently, the Cross family were told they would be removed from the plane if they did not move immediately. This was done loudly and very publicly, in contradiction to United’s policy to speak quietly to passengers asked to move. The result was other passengers yelling at the family.

Read Related Post Here: How Loving Someone With a Visible Disability Forces You to Stand Out

Sean Cross and his family at the Eagle Scout Court of Honor

“They loudly announced that we had to change seats or be forcibly removed. When we asked them to talk to Sean they walked away. They then announced over the speaker that there would be a flight delay. Other passengers became irate and yelled “just move”. We moved. The pilot then got on the speaker to tell everyone to thank the volunteers who gave up their seats for us, to which people applauded, as if we were the cause of the problem. It was humiliating. It was discriminatory. This is a clear case of ableism on United’s part,” describes Brenda Cross, Sean’s mother. 

What’s United Airlines’ policy on sitting in an exit row?

“The government requires any passengers seated in an exit row to be 15 years of age or older, be willing to assist in an evacuation and have no limitations that would prohibit their assistance. Before allowing passengers to travel in exit row seats, United must determine if they are able to take all required actions in the event of an emergency.”

There are 2 separate times when the airline is supposed to ask about exit row. First, as you scan your boarding pass at the gate. They did ask Sean there and he responded “yes”. They are supposed to ask again at the seats, which they never did. That’s when the Cross family were told to leave.

According to the Cross family, the flight crew at no time inquire as to whether or not Sean was capable of providing assistance to others in an evacuation. He was demanded to move simply based on the way he looks. 

If they would have asked Sean they might have learned that he if fully capable: an Eagle Scout, George Mason LIFE graduate, employee who lives independently. Even if they didn’t think he was capable after speaking to him, at least they wouldn’t have assumed incompetence based solely on a visible disability.

The flight attendant that initiated the action later told United Airlines Representatives later that she based the decision on “previous interactions with a person with Down syndrome and it had nothing to do with Sean.”

Read Related Post Here: Ending Organ Transplantation Discrimination

The National Down Syndrome Congress has issued a letter to United Airlines CEO, Oscar Munoz, demanding an apology for the family and something even more impactful:

“We believe that United should review its diversity sensitivity training and, when re-tooled, send this flight crew. We would like to know what steps United will take to ensure that no other person with a disability is treated in this manner,” wrote NDSC Executive Director David Tolleson.

Here’s my call to action:

Tweet: @United ableism is not acceptable. Apologize to Sean Cross #UnacceptableUnitedAirlines #ShameOnYouUnited.

 

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Down Syndrome Policy Expert Chosen as Parent Advisor for New National Center to Include Students with Intellectual Disabilities

Research shows that full inclusion for students with the most significant intellectual disabilities is the best path forward. Federal law requires it. But reality is much different! Talk to any parent of a student with Down syndrome, and they will tell you: “the struggle is real!” In fact, statistics show only 16% of students with intellectual disability spend the majority of their time in a general education classroom with their typical peers.

Now, the University of Minnesota’s National Center on Educational Outcomes (NCEO) plans to put more of these students in general education classes with the support they need. NCEO was recently awarded $10 million dollars from the U.S. Department of Education to create the TIES Center: Increasing Time, Instructional Effectiveness, Engagement, and State Support for Inclusive Practices for Students with Significant Cognitive Disabilities.

Read Related Post Here: $10 Million To be Awarded To Agency that Delivers Inclusive Results for Students with Down Syndrome

“We’re so excited to get this center up and running. The grant begins October 1st, and we’re thrilled to have this opportunity,” says principal investigator for NCEO, Sheryl Lazarus. The center is charged with a monumental task: to support systematic changes in the way most school districts are teaching our loved ones with intellectual disabilities (ID).

“We believe in full inclusion for these students, and now we want to make that happen for them,” explains Lazarus. The goal of the TIES Center is to get students with ID fully engaged in in the same instructional activities and curriculum as their typical peers, while meeting their individual learning needs.

Students with Down syndrome would be a target group for this program. In fact, National Down Syndrome Congress Education Policy Advisor, Ricki Sabia, was chosen to be the parent advisor and liaison for the TIES Center.

“In spite of the strong least restrictive environment language in IDEA, the vast majority of these students are still segregated from their peers. Studies show that students in separate classes have less access to the grade level curriculum and content trained teachers. NDSC is looking forward to the impact that the TIES Center will make to improve the quality of instruction for students with significant cognitive disabilities in inclusive environments,” Ricki Sabia says.

Read Related Post Here: Promoting Inclusion Through Universal Design for Learning

Lazarus says the TIES Center hopes to accomplish the following goals:

  1. Develop professional learning communities in partner state and local education agencies
  2. Develop coaching models for implementation of resources, inclusive practices and communicative competence.
  3. Improve the efficiency and effectiveness of existing resources.
  4. Support parents to become partners in the practice of inclusion for students with significant cognitive disabilities.
  5. Support systems change within the leadership of state and local education agencies for implementation of inclusive practices.

Research on better inclusion won’t be limited to the University of Minnesota. Lazarus says they will have subcontractors at the University of North Carolina Charlotte, University of North Carolina Greensboro, University of Cincinnati, CAST, University of Kentucky and the Arizona Department of Education. There will also be parent liaison’s working with the TIES Center to help parents better advocate for their child.

Read Related Post Here: How Homeschooling is One Path to Inclusion for Students with Down Syndrome

Lazarus says they plan to work backwards to find solutions to the barriers keeping students with ID out of general education classrooms. “We plan to work with schools to find out what’s working and what’s not to create better outcomes for these students. Hopefully that will translate into materials for teachers and parents. We don’t pretend to have all the answers, but we’re going to work hard to find the best path forward,” says Lazarus.

To learn more visit https://nceo.info. I’ll be posting more information on this grant project as new policies or practices are introduced.

What barriers do you see to full inclusion for students with Down syndrome? Comment below and share your experiences and thoughts.

 

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$10 Million Dollar Grant Awarded to Support Inclusion for Students with the Most Significant Disabilities

Research shows that full inclusion for students with the most significant intellectual disabilities is the best path forward. Federal law requires it. But reality is much different! Talk to any parent of a student with Down syndrome, and they will tell you: “the struggle is real!” In fact, statistics show only 16% of students with intellectual disability spend the majority of their time in a general education classroom with their typical peers.

Now, the University of Minnesota’s National Center on Educational Outcomes (NCEO) plans to put more of these students in general education classes with the support they need. NCEO was recently awarded $10 million dollars from the U.S. Department of Education to create the TIES Center: Increasing Time, Instructional Effectiveness, Engagement, and State Support for Inclusive Practices for Students with Significant Cognitive Disabilities.

Read Related Post Here: $10 Million To be Awarded To Agency that Delivers Inclusive Results for Students with Down Syndrome

“We’re so excited to get this center up and running. The grant begins October 1st, and we’re thrilled to have this opportunity,” says principal investigator for NCEO, Sheryl Lazarus. The center is charged with a monumental task: to support systematic changes in the way most school districts are teaching our loved ones with intellectual disabilities (ID).

“We believe in full inclusion for these students, and now we want to make that happen for them,” explains Lazarus. The goal of the TIES Center is to get students with ID fully engaged in in the same instructional activities and curriculum as their typical peers, while meeting their individual learning needs.

Read Related Post Here: Promoting Inclusion Through Universal Design for Learning

Lazarus says the TIES Center hopes to accomplish the following goals:

  1. Develop professional learning communities in partner state and local education agencies
  2. Develop coaching models for implementation of resources, inclusive practices and communicative competence.
  3. Improve the efficiency and effectiveness of existing resources.
  4. Support parents to become partners in the practice of inclusion for students with significant cognitive disabilities.
  5. Support systems change within the leadership of state and local education agencies for implementation of inclusive practices.

Research on better inclusion won’t be limited to the University of Minnesota. Lazarus says they will have subcontractors at the University of North Carolina Charlotte, University of North Carolina Greensboro, University of Cincinnati, CAST, University of Kentucky and the Arizona Department of Education. There will also be parent liaison’s working with the TIES Center to help parents better advocate for their child.

Read Related Post Here: How Homeschooling is One Path to Inclusion for Students with Down Syndrome

Lazarus says they plan to work backwards to find solutions to the barriers keeping students with ID out of general education classrooms. “We plan to work with schools to find out what’s working and what’s not to create better outcomes for these students. Hopefully that will translate into materials for teachers and parents. We don’t pretend to have all the answers, but we’re going to work hard to find the best path forward,” says Lazarus.

To learn more visit https://nceo.info. I’ll be posting more information on this grant project as new policies or practices are introduced.

What barriers do you see to full inclusion for students with Down syndrome? Comment below and share your experiences and thoughts.