Tag: Down syndrome

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Mother’s Day Advice From Moms Who’ve Been There

This mother’s day I hope that you take some time for yourself, and realize that you’re doing the best you can for your child. Drink the wine, eat the chocolate. Kick back, and know you and your child will be ok. For proof of this, I asked some mothers, who are further along on their parenting journey, to give some sage advice to newer moms. I asked all of these rockstar advocate moms the following questions:

  1. What advocacy advice do you have for moms just starting this journey?
  2. What advice do you have for new moms to prevent burnout? 

I got so much good advice from moms, that I made this a 2-part series. Click HERE for the first part!

If you haven’t listened in on Charmaine Thaner’s Facebook Live posts, you’re missing out. Every week, Charmaine hosts an advocacy guru or gives timely advice on IEPs. Check it out here. Her son, 29-year-old Dylan, rents his own house with a roommate, attended the University of Colorado Springs, currently works at Red Robin restaurant. Charmaine credits all of this to full inclusion in K-12.

Charmaine’s advocacy tip for new moms is to focus on your child’s strengths. “At the beginning of an IEP meeting ask each person sitting around the table to share a couple strengths your child has. It creates a positive tone and helps everyone see your child as a person with gifts to share,” Charmaine says.

To prevent advocacy burnout she recommends to build relationships. “The 3 Rs of Advocacy are Relationships, Relationships, Relationships. Get to know the staff as people, what they’re interested in, about their family, what you have in common with them. Help teachers build positive relationships with your child. When a teacher knows your child on a personal level they will go the extra mile for him/her.”

Stephanie Smith Lee and her late daughter, Laura, are the pioneer advocates for inclusive higher education. When Laura asked her mom back in 2000, why she couldn’t go to college like all her friends, Stephanie said “Why not!” That started an amazing journey that has help lead to more than 260 inclusive college programs for people with disabilities. Laura went on to graduate from George Mason University’s LIFE program, work at the World Bank, volunteering at a food bank, and becoming a nationally recognized self-advocate giving speeches nationwide with her mother by her side.

Stephanie’s advice to new moms: “Understand that you really can make a difference, and that there are many of us who have been working on advocacy for decades years who will help and support you.”

Stephanie says to “do the best you can with the time and resources you have available. Don’t feel guilty when you need to take time for yourself, your family, and your work. Come back at it refreshed and ready to make a difference!”

Laura and Stephanie doing what they do best: Advocating!

Senior Education Policy Advisor for the National Down Syndrome Congress, Ricki Sabia, has also been at the forefront of political advocacy and disability rights. She was instrumental in securing educational rights for students with disabilities in the new Every Student Succeeds Act (ESSA). Her son, 25-year-old Steve Sabia, lives independently with a roommate, attended Montgomery College, and works at Holy Cross Hospital.

Ricki’s top advocacy tip for new moms: “The ability to collaborate and see issues from other perspectives is as important as knowing your rights under the law.”

Ricki reminds parents to “pick their battles, join forces with others, pay attention to your health and well-being, and don’t forget to take time to simply enjoy your child.”

Ricki and Steve

Amy Allison may not have a child with a disability by birth, but she has served hundreds through advocacy. As the Chief Operating Officer of the Down Syndrome Guild of Greater Kansas City, Amy has visited over 800 families receiving a diagnosis for Down syndrome, and currently serves 1500 people with Down syndrome. Attending the KCDSG’s annual, winter conference is a must. I learned how to potty train my own kiddo with Down syndrome, and will never forget the fabulous siblings workshop. Click here for more on that.

Amy says parents should “trust their gut and instincts. If something feels off about one of your children follow that voice in your head and keep pushing for answers regardless of what the “experts” may say to you. Allow your child space and grace to try, fail and make mistakes even though you can see the pain and heartache coming. If you overprotect your child and shelter them from the consequences of their actions, you set them up to fail as adults.”

As for preventing advocacy burnout, Amy says “be sure to surround yourself with a good group of friends and family members who will go to the mat for you or your kids. And DO NOT be afraid to ask for help or admit you are tired. Advocacy is a marathon not a sprint. Pacing yourself and choosing your battles will take you help you cross the finish line!”

Amy with her 3 kids

I met Carolyn and her son, Walter May, of Ohio from a Self-Advocacy Communications Workshop I co-taught for adults with Down syndrome in our area. Carolyn says things have changed drastically since her son was born 45 years ago. Walter told me how he was bullied and taunted in school. Still, this mother-son duo thrived despite the prejudices they faced. He’s an extremely well-spoke self-advocate who works locally for the famous “Homies with Extra Chromies” t-shirt company, as well as a local tennis club. He spouts off sports trivia like no one’s business, and loves to joke around.

Carolyn and Walter

Carolyn’s advice is simple, yet true: “Never give up!” and “Always take time for yourself.” Thanks Carolyn and Walter for showing me what I have to look forward to. I’ll miss you guys!

Happy Mother’s Day to all you brave, wonderful mothers! Celebrate you today! 

 

 

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A Mother’s Day Wish

These are the messy years of motherhood for me.

Strips of paper with scribbles on them are strewn about the house. So are wet socks, dirty diapers, overly-loved books, and legos.

My 3 vivacious children create such a constant eruption of clatter that the neighbor often comments on the chaos.

These may also be some of the most magical years of motherhood.

My type-A personality and independent spirit sometimes prevents me from fully embracing the mess that is motherhood. Still, I’m starting to realize my magical days may be numbered.

Our son, Troy, has Down syndrome.

We talk about Down syndrome often in passing, but it enjoys a backseat to the craziness of having 3 kids under 5-years-old.

Troy’s typical twin brother, Hunter, seems immune to the term. Our baby girl, Cora, blissfully loves and hates Troy in any given moment throughout the day.

We live in a bubble. A safe and simple safe-space.

In our day to day life, no one seems to care about Down syndrome.

We love Troy; he loves us. It’s that simple.

But children grow, and life gets complicated.

Down syndrome morphs into school placement, IEPs, LRE, FAPE, inclusion or exclusion. Kids question. Teachers negotiate. Parents complain. Our family bubble takes on a slow leak.

 So this Mother’s Day I wish to cherish and immortalize these days.

I wish to remember these days as I fight to have Troy included in school, community, and work.  The simply messy days where everyone is ignorant to the brutal world that sometimes overtakes unique families like ours.

These are the days!

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How School Boards are Using Endrew F. Supreme Court Case Against Students with Down Syndrome

A recent U.S. Supreme Court case that was meant to be a watershed moment for the Down syndrome community and all students with disabilities, has quickly turned into yet another way to try and segregate our children.

The Endrew F. can be compared to the Brown v. Board of Education ruling for African American students. In Endrew F., The Supreme Court unanimously ruled schools must be held to a “markedly more demanding” standard when educating students with disabilities. But school boards are using the high court case to make an argument for continued segregation of students with the most significant disabilities.

Read Related Post Here: Realizing the Promise of the Endrew Supreme Court Case

It’s been 10 months since the Supreme Court created a new standard that requires special education students to meet academic standards and advance grade to grade. In that short time two cases revolving around the segregation of students with Down syndrome have put in question the promise of Endrew F.

As these two cases advance to the Ninth and Sixth Circuit Court of Appeals, the question will be: How will the courts interpret Endrew F. for students with intellectual disabilities? Can these students only receive “more meaningful benefit” in a self-contained class?

Read Related Post Here: 7 Research Studies You Can Use at Your Child’s Next IEP Meeting to Win the Fight for Inclusion

If you’ve read this blog before, or have any knowledge of inclusion for students with Down syndrome, you know there’s NO research that shows more academic benefit for students with the most significant disabilities in self-contained classrooms.  In fact, every research study done since the Individuals with Disabilities Education Act first became law in 1975, shows the regular classroom with proper supports provides all students with the best outcomes.

In both of the current cases at the federal appellate court level, R.M. v. Gilbert Unified School District and L.H. v. Hamilton County Department of Education, the parents and their supporters (COPAA, NDSC, NDSS, and other disability rights organizations) argue the boys with Down syndrome are in fact making progress in the regular classroom. You can read more about the cases below.

Read Related Post Here: L.H. v. Hamilton County Department of Education and R.M. v. Gilbert Unified School District

But the National School Boards Associations filed an amicus brief against the boys, and in favor of the school districts that want to segregate them. The organization that supports more than 90,000 school board members argues “academic benefit is the key factor for a court determining whether a school district has provided services in the Least Restrictive Environment (LRE).” The organization believes Endrew F. strengthened the importance of the educational benefit factor in LRE determinations. They stressed that school personnel are the experts when deciding if progress has been made and if placement should change, and courts shouldn’t “second guess” this judgement.

Read the National School Boards Association amicus brief for the R.M. Gilbert Unified School District here and for the L.H. v. Hamilton County Department of Education case here. 

Special Education Attorney and Professor, Susan Marks, is troubled by the National School Boards Association interpretation of the ruling. “They are essentially using Endrew F. as justification for trumping the LRE if a school team believes that a student would have greater academic progress in a separate program. Another troubling issue with the National School Board’s reasoning is their assertion that courts should give deference to the school professionals in making such determinations. However, we know that the IDEA gives parents a substantial role in developing their child’s program,” Susan Marks explains.

Special Education Advocates and Attorneys agree if the courts accept this troubling interpretation of Endrew F., parents will find it increasingly more difficult to access an inclusive placement. Still, many are confident the boys with Down syndrome in this case will prevail, because of the evidence that they made meaningful progress in regular education.

What do you think about these cases? Who do you think will prevail and why? Why are we still fighting for inclusion of students with the most significant disabilities? Tell me what you think below.

 

 

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How a Tennessee Boy with Down Syndrome’s Family Fought School Segregation and Won

Deborah Duncan Rausch says it took countless sleepless nights researching and even selling her home to fight her son, Luka’s, public school district and win. She doesn’t want any other family to have to do the same just to get their child included.

Deborah with her son, Luka

Deborah says it started in their hometown of Knoxville, Tennessee when she realized starting in preschool Luka would be segregated from his peers and set on a non-academic path to nowhere. The family moved to Hamilton County to a magnet school in Chattanooga that initially accepted Luka with open arms. But starting in 3rd grade, as high stakes state testing began, the school started pushing for a segregated setting even though Luka was making progress.

The district wanted to place Luka for half his day in a self-contained classroom in a school outside of his neighborhood. “The segregated class follows no state curriculum or standards. There’s no homework or grades. No accountability,” Deborah explains.

Read Related Post Here: Ninth Circuit Court to Decide if Student with Down Syndrome Can Stay in General Education Classroom

Deborah pushed back and started advocating for other families facing the same prejudice in her school district. “It was so important to me because I knew it was endemic. They were trying to segregate my son as a 9-year-old. It was worth selling my house to pay the $75,000 in legal fees to force the school district to follow federal law. But what about the families that can’t?” Deborah asks.

Knowing Luka would not receive a Free and Appropriate Education in the Least Restrictive Environment if he stayed, Deborah moved her son to a Montessori School where he continues to attend today. After a five year battle with the school district, the family eventually prevailed at the district court level in Tennessee. The District Court ruled that a self-contained class is more restrictive than necessary, but that the family would not receive reimbursement for the private Montessori School.

She didn’t stop there. “I’m in finance, so I know you have to follow the money,” says Deborah. She started digging deep, making numerous Freedom of Information requests, and soon uncovered an incentived funding formula that keeps students with disabilities in her county in a cycle of segregation. “Our district’s formula pays more in segregated setting receiving the exact same level of service, than if they were in regular setting. We filed suit against Tennessee’s Department of Education for violating their fudiciary duties. They quickly settled with us, because they knew we were right,” Deborah explains.

“We can’t go any place in our town without parents coming up to us and thanking us for what we did. They say they felt helpless,” Deborah describes.

Read Related Post Here: 7 Research Studies You Can Use at Your Child’s Next IEP Meeting to Win the Fight for Inclusion

The family’s battle for inclusion is still not over. Hamilton County Schools actually filed an appeal to the Sixth Circuit Court of Federal Appeals. “They have no ground to land on, but it allows them to delay reimbursement of our legal fees. They just look vindictive and have spent a lot of taxpayer money just to violate the law. We finally decided to cross appeal for reimbursement of the Montessori school private tuition,” Deborah explains.

12-year-old Luka

The Supreme Court of the United States ruled that families can be reimbursed for private school tuition if the public school IEP was found to be inappropriate, and the if the private school placement is deemed to be the most appropriate available option (School Committee of the Town of Burlington v.Department of Education of Massachusetts). “The District Judge even stated Luka made progress at the Montessori School, and he ruled the public school was inappropriate. I think he knew there was a clear violation, but just didn’t want to penalize the school district by making them pay for the private school tuition,” Deborah explains.

Even after all of the family’s success, Deborah would never recommend suing. “I would recommend learning everything you can about your child’s rights. Get connected to a local advocacy agency. No parents should go into an IEP meeting alone. Always have an advocate with you. Schools will negotiate if pushed. Fewer district will go as far to segregate as ours did,” Deborah says.

“And If you don’t care at all about disabilities, care about the the cost of taking parents to court. We could be pushing a million dollars for my son’s case, and not a single student has been educated with that money. That money should have been spent on training teachers, co-teachers, advocacy training for parents. Everyone should be outraged by that.”

A ruling by the Sixth Circuit Court for L.H. v. Department of Education of Hamilton County could take months or even a year. I will keep you posted on any updates about the case.

Have you or someone you know had to fight a similar battle for inclusion? Are you frustrated that we’re still fighting this fight more than 30 years after the Individuals with Disabilities Education Act (IDEA) was passed? Tell me about it below.

 

 

 

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Parents and Non-Profit Advocate for New Medical Guidelines for Adults with Down Syndrome

“I was getting phone call after phone call from heartbroken parents about their once successful adult child with Down syndrome suddenly shutting down; having major health or mental problems. They have no where to turn. Most doctors don’t have the basic knowledge to treat adults with Down syndrome.”

Amy Van Bergen with her son, Wils

Amy Van Bergen says it was these regular phone calls she received serving as Executive Director of the Down Syndrome Association of Central Florida for the past 15 years that convinced her to start advocating for new medical guidelines for adults with Down syndrome.

The updated medical guidelines are long overdue. Although life expectancy has more than doubled for people with Down syndrome in the past 30 years, the new longevity often comes with a host of health problems. It is estimated 70% of people with Down syndrome will develop Alzheimer’s. They’re also at higher risk for many immune disorders and obesity. At the same time, they’re at lower risk for experiencing solid tumor cancers, heart attacks, and strokes. Because of this difference in pathology, adults with Down syndrome deserve unique medical care.

Read Related Post Here: Our Family LENDs Unique Perspective to Medical Professionals

Global Down Syndrome Foundation convinced Amy to use her contacts with other Down syndrome affiliates throughout the country to raise awareness and money for the development of new medical guidelines. The nonprofit spearheaded the initiative at the beginning of 2017, and hopes to have the guidelines approved by the end of 2018.

Global Down Syndrome Foundation is still raising money to finish the adult medical guidelines. Click here to donate!

The American Academy of Pediatrics already has medical guidelines for children and teens with Down syndrome. I bring these guidelines with me every time I take my 5-year-old to his annual well-check. Global says often young adults with Down syndrome “fall off a cliff” when they leave their pediatrician for a new doctor with no medical guidelines.

“We believe this important project will be a “first-in-kind” because (1) Global has enlisted a national medical guidelines organization to ensure there is an extensive literature review process and that any recommendation or guideline is evidence-based, (2) we are fortunate to have several leading U.S. medical practitioners expert in the care of adults with Down syndrome who have agreed to author the guidelines, (3) Global is committed to raising the funds needed in order to update the guidelines every five years so as to build upon new clinical research findings and improve the guidelines with each iteration,” explains Global’s Director of Adult Initiatives and Special Projects, Bryn Gelaro.

Modeled after the guidelines for children and teens, the new adult medical guidelines will include an easy-to-use list of medical assessments and tests adults with Down syndrome should take over the lifespan. “Short term we hope the guidelines improve the care adults receive by reducing the incidence of misdiagnosis, alerting doctors to the specific health needs of this population, and empowering adults and their families to seek proper care.  Long term we hope the guidelines build upon themselves, both in the breadth of the content areas covered and in the number of Down syndrome experts that collaborate as authors. We also hope that the guidelines, overtime, will highlight the holes in scientific literature related to Down syndrome so that researchers can address those gaps,” Bryn says.

Read Related Post Here: How to End Organ Transplantation Discrimination in Your State

In the end, it will be up to self-advocates, parents, adult siblings, and other caregivers to understand these new guidelines, and make sure their doctors’ do too. Many already understand the stakes are high. “I haven’t had to sell anyone on this project. They understand the importance,” Amy Van Bergen explains. “We’ve already raised more than $100,000 in the Down syndrome community. Our goal was $170,000. And Global will match what we raise.”

Amy will be at Down Syndrome Affiliates in Action Annual Leadership Conference this February. She hopes to meet her goal soon, so Global can finish their important work.

Donate to Global Down Syndrome Foundation’s Initiative Here! 

Do you have an adult child with Down syndrome? How will these medical guidelines impact your loved one? Comment below!