SPRING 2020

Government Funding for Down Syndrome Research Triples – What This Could Mean for Children & Adults with Down Syndrome

What You Need to Know

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Overview

The exciting new Down syndrome research at the National Institutes of Health (NIH) and the NIH INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). How families and Down syndrome organizations can participate in, and benefit from research. How to use powerful medical registry resource, DS-Connect®, under the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), and learn about research opportunities. A new clinical trial aimed at normalizing immune function in Down syndrome to cure autoimmune skin conditions and improve cognitive function and quality of life. The Crnic Institute Human Trisome ProjectTM, the most ambitious dataset for people with Down syndrome that serves as a discovery engine aimed at the diseases that people with Down syndrome are highly predisposed to (e.g. Alzheimer’s disease and autoimmune disorders) and protected from (e.g. solid tumor cancers).

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Speakers

Dr. Melissa Parisi Chief, Intellectual & Developmental Disabilities Branch, Eunice Kennedy Shriver NICHD National Institutes of Health (NIH), DS-Connect® Registry Manager

Dr. Joaquín Espinosa Executive Director, Linda Crnic Institute for Down Syndrome, Professor of Pharmacology, University of Colorado

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PDF Presentation: Download Government Funding for DS Research

Dr. Melissa Parisi

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PDF Presentation: Download Scientific Research in the INCLUDE Era

Dr. Joaquín Espinosa

Jamie Foxx, DeOndra Dixon, Caterina Scorsone, John C. McGinley, Walt Snodgrass and more support the World’s Largest Event Benefitting People with Down Syndrome

Press Contacts:

DENVER, CO June 30, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced an impressive roster of dedicated celebrity supporters for its marquee Be Beautiful Be Yourself Fashion Show scheduled for Saturday, October 3. The annual event is the largest fundraiser for Down syndrome in the world, raising over $20 million to date for life-saving and transformative research and medical care.

The star-studded roster includes Academy and Grammy Award winner Jamie Foxx; award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, Megan Bomgaars, and Caterina Scorsone; Denver Broncos’ Brandon McManus, world-renowned swimmer Karen Gaffney, and Colorado Rapids’ Kellyn Acosta; award-winning speakers, journalists, and TV anchors DeOndra Dixon, Frank Stephens, Kyra Phillips, John Roberts, Kim Christiansen, and Tom Green; R&B power couple Ronnie & Shamari DeVoe; and supermodel Amanda Booth. A full roster of celebrities will be announced in the coming weeks.

The event will honor GLOBAL Ambassador Walt Snodgrass from Omaha, Nebraska. Walt is a sophomore at Westside High School, where he is fully included. He runs track and plays in the school band, and is part of “Sparklers” Cheer and the unified bowling team. Walt is a staunch advocate for inclusion. His contributions to his family and community, his zest for life, and compassion for others make him beloved wherever her goes. “I love modeling in GLOBAL’s fashion show in Denver, showing the world what people with Down syndrome can do. Together, we are changing the world,” says Walt. During the fashion show, 20 brilliant and beautiful models with Down syndrome will rock the runway, including GLOBAL’s Ambassador.

“At GLOBAL we are taking COVID-19 very seriously, and we are closely monitoring and following government guidelines to determine the format of the fashion show,” says Michelle Sie Whitten, GLOBAL President and CEO. “As of now, we are planning a smaller in-person event and a larger virtual component that we hope will be every bit as magical and inspiring.”

In response to the COVID-19 pandemic, GLOBAL has been a leader for the Down syndrome community – creating important resources like the Down syndrome/COVID-19 Q&A and supporting legislation that prohibits discrimination so that people with Down syndrome and other disabilities can receive COVID-19 medical care in the event there is medical care rationing. GLOBAL also provided COVID-19 Emergency Relief Global Grants to over 100 individuals with Down syndrome and their families needing food, medicine, and shelter, and most recently GLOBAL provided over 31,000 pieces of personal protective equipment (PPE) to people with intellectual and developmental disabilities who are wards of the state in Colorado.

Proceeds from GLOBAL’s Be Beautiful Be Yourself Fashion Show underwrite GLOBAL’s direct help to the community, excellent quality health care to over 2,000 patients with Down syndrome from 28 states and 10 countries, and transformative research focused on the relationship between Down syndrome and Alzheimer’s disease, solid tumors, autoimmune disorders and more.

To support GLOBAL’s work, please consider a donation.

To learn more, visit: www.bebeautifulbeyourself.org

To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

Lifespan of Resources will have a National and International Impact

Press Contacts:
GLOBAL: Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
NDSC: Rhonda Rice | rhonda@ndsccenter.org | C: (678) 770-6641
IMDSA: Brandy Hellard | bhellard@imdsa.org | C: (513) 571-4186

DENVER, ATLANTA, Stow MA. May 07, 2020– Today, Global Down Syndrome Foundation (GLOBAL), the National Down Syndrome Congress (NDSC), and the International Mosaic Down Syndrome Association (IMDSA) have announced that they will expand existing collaborations aimed at consolidating and creating Down syndrome resources across the lifespan for families.

The three national organizations will contribute funding, national and international distribution, and coordinated annual staffing associated with the Prenatal Testing & Down Syndrome Information pamphlet, the NDSC Annual Convention Global Down Syndrome Research Roundtable, the IMDSA Research & Retreat conference, and the Global Medical Care Guidelines for Adults with Down Syndrome.

“Our organizations have been collaborating for years on these important print and conference resources,” says Michelle Sie Whitten, President and CEO of GLOBAL. “To be able to make our existing collaborative resources available for free, in different modalities, and in many different languages, will have a wonderful national and international impact.”

“NDSC is proud to help support numerous Down syndrome initiatives and organizations that help our self-advocates and families,” says David Tolleson, Executive Director of NDSC. “To have a strategic plan to link our existing collaborations – from prenatal to adult care – is so important for our self-advocates and families dealing with issues across the lifespan.”

“I so appreciate this opportunity to ensure that people with mosaic Down syndrome, and the issues they face at various stages of life, will be included in future NDSC-GLOBAL national research and medical care roundtables,” said Brandy Hellard, President of IMDSA. “We are excited to help distribute the prenatal and adult guidelines at our IMDSA Research & Retreat conference and to dovetail our research to support future iterations of the guidelines.”

Expanding Collaborations:

• Prenatal Testing & Down Syndrome Information pamphlet: This resource is a result of nationwide research that included input from 400 pregnant women and over 400 clinicians working with pregnant women. It is available for free in English, Spanish & Icelandic and will expand to several other languages in the next two years. Based on feedback from genetic counselors, the additional languages will include Arabic, Nepalese, Bengalese, French, and Greek.
• NDSC Annual Convention Global Down Syndrome Research Roundtable: This resource attracts between 400-500 attendees each year. The collaboration will expand to have a virtual component that can reach more attendees and will include streams on mosaicism, autism, and other important but small sub-populations.
• IMDSA Research & Retreat conference: This resource is an annual conference attracting attendees from all over the world each year. The collaboration will expand to have a virtual component that can reach more attendees and will also have a sub-focus of supporting the Global Medical Care Guidelines for Adults with Down Syndrome.
• Global Medical Care Guidelines for Adults with Down Syndrome: This resource will be published after four years of work incorporating eleven authors who are the lead clinicians serving adults with Down syndrome across the United States. The collaboration will include joint professional surveys and concerted support for guidelines questions that have little or no research today.

To access the resource, families, friends and professionals can visit the websites of GLOBAL, NDSC, and IMDSA.

Global Down Syndrome Foundation (GLOBAL)
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.

National Down Syndrome Congress (NDSC)
The National Down Syndrome Congress (NDSC) is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome.

International Mosaic Down Syndrome (IMDSA)
International Mosaic Down Syndrome Association (IMDSA) is designed to provide support, information and research to any family, individual or professional whose life has been affected by mosaic Down syndrome.

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Global grants fund a total of 80 jobs for people with Down syndrome in the US and Peru

At DSAIA Leadership Conference; Keynote speaker Zack Gottsagen and Global President & CEO Michelle Sie Whitten with awardees (L-R): Down Syndrome Association of Greater St. Louis, Down Syndrome of Louisville, Down Syndrome Association of Connecticut, Down Syndrome Association of West Michigan, Down Syndrome Association of Delaware (Not Pictured: Down Syndrome Association of Wisconsin, Down Syndrome Network Arizona, Sociedad Peruana de Sindrome Down)

Press Contacts:
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832

Orlando, FL and DENVER, CO February 28, 2020 – Today, Global Down Syndrome Foundation (Global) announced eight new Global Self-Advocate Employment Initiative Grant winners at the national Down Syndrome Affiliates in Action (DSAIA) Annual Leadership Conference.

“We started this grant program in 2016 after attending a DSAIA conference and realized that many Down syndrome organizations cannot afford to employ people with the condition despite advocating for other companies to do so,” said Michelle Sie Whitten, President and CEO of Global. “To address that, we worked with our members on this grant program and we are proud to have supported 80 self-advocates jobs from 20 states and one in Peru! I’m so proud of our team and our members for making this all a reality in such a short time.”

The 2020 winners are: Down Syndrome Association of Connecticut, Down Syndrome Association of Delaware, Down Syndrome Association of Greater St. Louis, Down Syndrome Association of West Michigan, Down Syndrome Association of Wisconsin, Down Syndrome Network (AZ), Down Syndrome of Louisville, and Sociedad Peruana de Sindrome Down (Peru). This year’s Global Self-Advocate Employment Initiative Grants will underwrite self-advocate volunteers transitioning to paid contractors or staff, expansion of hours for self-advocate staff, work-place training, and public speaking training.

Past winners appreciate that Global’s grants can be multi-year, and that many grants have led to leveraged funding.

“Our organization is dedicated to helping our adults with Down syndrome develop vocational and professional skills. We have been fortunate to earn more than one of Global’s transformative employment grants, allowing us to train, prepare, and hire self-advocates for employment especially in our hospital clinic,” says Lauren Camp Gates, Executive Director of Down Syndrome Association of Delaware.

Erin Suelmann, Executive Director of Down Syndrome Association of Greater St. Louis agrees, “Global has helped us expand our ‘Ready to Work Employment Initiative’ programs. In 2018, Global’s grant empowered us to hire an Employment Assistant Ambassador and now we have on-going funding for that position. This year we are so grateful for another grant to grow our staff and hire a Peer Trainer for Social Enterprise.”

2020 grant winners received their award certificates from Whitten and DSAIA conference keynote speaker, Zack Gottsagen. Gottsagen, who starred in the award-winning hit indie film, The Peanut Butter Falcon, is an example of a hardworking individual with Down syndrome excelling in his career. Whitten is an executive producer of The Peanut Butter Falcon and led Global Members in marketing initiatives to ensure the film’s distribution success.

“I wanted to act from the time I was three,” said Gottsagen. “My mom listened to me so I took acting lessons for years. Then two acting coaches wrote a film for me to star in and I won awards for my acting at SXSW and Palm Springs Film Festivals. I showed up, worked hard, got this big break, and presented at the Oscars. It is important that parents and organizations have high expectations and provide training to children and adults with Down syndrome.”

Global membership benefits include supporting life-saving and transformative initiatives, Global’s award-winning magazine Down Syndrome WorldTM, Down syndrome expert webinars, and two first-in-kind grant programs – Global Membership Educational Grants and Global Membership Self-Advocate Employment Initiative Grants. To become a Global Down Syndrome Foundation member or to learn more about member benefits, visit: https://www.globaldownsyndrome.org/become-a-member/.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

ETC

Funding Increases for the National Institutes of Health (NIH) and Down Syndrome Research Lauded by Global Down Syndrome Foundation

Photo by Marleen Van den Neste

Press Contacts:
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832

December 22, 2019, Denver, CO– On Friday, President Trump signed a $1.4 trillion spending package that will fund the government until September 2020 and averted a government shutdown. Earlier in the week, the package passed the House and Senate with victories and compromises on both sides of the aisle.

“Finally, we have secured the funds and resources for our military — our national security,” said Senator Richard Shelby (R-AL), Chairman of the Senate Appropriations Committee who also heads the appropriations subcommittee on defense. “This package includes a significant increase in defense funding and the largest pay raise in a decade for our men and women in uniform.”

Chairwoman of the House Appropriations Committee Nita Lowey was also pleased with the results, “I am particularly proud that House Democrats prevailed in securing historic investments For the People, including record funding levels for Head Start and lifesaving medical research at NIH, and in funding priorities vital to our shared security, like gun violence prevention research and election security grants to states.”

Included in the spending package was legislation providing a 7% increase or $2.6 billion more funding to the NIH for an annualized budget of $41.7 billion. Legislation also highlights a “minimum” of $60 million for Down syndrome research in FY2020 through NIH’s Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome (INCLUDE) trans-NIH project. This would bring total Down syndrome research funding up to $98 million for the year.

Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation, issued the following statement:

“Global thanks the Administration, our champions in Congress, and leadership at NIH who made Down syndrome research and medical care a priority resulting in the NIH INCLUDE project. It is important to note that this result reflects a decade of hard work and two decades of inequity in funding for our Down syndrome community.

The key turning point was the Labor, Health and Human Services, Education and Related Agencies House Appropriations Subcommittee hearing on Down syndrome research in October 2017. At the hearing, testimony from Global Ambassador, Frank Stephens, received a standing ovation, 100% bipartisan support, and over 150 million views on C-Span and other outlets.

This first ever hearing of its kind and testimonies were made possible by Congresswoman Cathy McMorris Rodgers, Chairwoman Rosa DeLauro, and Ranking Member Tom Cole with further support from Senators Roy Blunt, Patty Murray, and so many others from both sides of the aisle.

The FY2020 budget for NIH and Down syndrome research signals a clear message that the longevity and improved health outcomes of people with Down syndrome is important, and that their unique disease experience can also benefit others without Down syndrome. Global is proud and incredibly grateful to have worked with the Administration, NIH, and Congress to secure the funding for this research.”

The INCLUDE project focuses on diseases and conditions like Alzheimer’s, blood cancers, and autoimmune disorders that have a higher prevalence among individuals with an extra copy of chromosome 21 as well as conditions like solid tumor cancers that are rare among individuals with Down syndrome. The INCLUDE Steering Committee is chaired by Dr. Lawrence Tabak, NIH Principal Deputy Director in partnership with Dr. Diana Bianchi, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and Dr. Gary Gibbons, Director, National Heart, Lung, and Blood Institute (NHLBI) as co-chairs.

To learn more about the NIH INCLUDE project, visit https://www.nih.gov/include-project/include-project-research-plan#leadership

To learn more about the Crnic Institute for Down Syndrome, visit https://medschool.cuanschutz.edu/linda-crnic-institute

To learn more about the Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation is at the forefront of Research, Medical Care, Education, and Advocacy dedicated to significantly improving the lives of people with Down syndrome. Global supports the research of hundreds of scientists around the world through their advocates, partners and affiliates, including the Crnic Institute for Down Syndrome, the Rocky Mountain Alzheimer’s Disease Center, the Anna and John J. Sie Center for Down Syndrome, and a new pilot Adult Clinic. Global invites its supporters to celebrate over a decade of milestones in helping people with Down syndrome at their Be Beautiful Be Yourself Fashion Show. To learn more, please visit www.globaldownsyndrome.org and www.bebeautifulbeyourself.org.

WINTER 2019

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Overview & Speakers:

This webinar will explain the frequency of diagnoses and importance of adherence to help your child and/or adult wear their medical equipment. Key takeaways include:

• Common types of challenging behaviors that children and adults with Down syndrome may have when working to wear medical equipment

• A step-by-step plan for increasing use of medical equipment

• Motivators for avoiding wearing medical equipment and how to manage these behaviors

Lina Patel, PsyD joined the Sie Center for Down Syndrome at Children’s Hospital Colorado as Director of Psychology in November of 2012. She has extensive experience in treatment planning, parent support, diagnostic evaluation, and intervention. As she believes that behavioral challenges arise for many different reasons, she prides herself in coordination of care with community providers, educational supports, medical team members, and caregivers. Additionally, she conducts clinical research to better understand how neurodevelopment impacts behaviors.

Overview: Click to Listen

Powerpoint Presentation: Click to Download

Additional Handout: Click to Download

Questions & Answers:

Gail, a member of the Down Syndrome Association of Delaware:

1. How do you get your child with DS and Autism to wear glasses for more than 4 seconds?

This is a difficult question, as sensory issues are particularly challenging for children who are dually diagnosed. Is there a time of day that your child is particularly calm? Maybe when eating or in the bathtub? Without knowing specifically what your child’s level of understanding is, I would also consider using a visual timer (try the Countdown timer) to teach your child that the glasses will come of in 4 seconds to start, then maybe 7 seconds, and then increase from there. Since the visual timer looks the same, even when the time is increased, perhaps that may help your child learn how long before practice is done.

2. How do you get your child to not pull out their g-tube, pull out their hearing aids, and throw their glasses when they have severe sensory issues?

I believe that children with sensory issues get so overwhelmed and focused on the distress they are experiencing that they try to escape from the situation that is distressing. The best advice I can give is to start with desensitization to one of the pieces of equipment that you are referring to. It makes most sense that you start with the g-tube. You may need to do a combination of denying access to your child’s g-tube and at the same time keeping your child’s hands busy at all times. I’m not sure how old your child is, but some families have used a wrap over the g-tube site or placed their child in something like a onsie or a leotard to reduce access.

3. Can you give me tips on how to operate as a more normal family in a public setting while tending to all these medical needs?

I can imagine the distress that your family must experience with a very medically complex child. I feel like your question may require further discussion about what specifically feels the most distressing. Then, I would work on that part first. Is your child a picky eater? Is it difficult to go out to restaurants together? Is it more related to something else? Please reach out to discuss further.

Lexy, a parent from Verona, WI:

1. CPAP mask! He can take it off himself in the night. And he has nothing that is a high enough motivator. Help!

The first thing that I would think about is whether he is taking the mask off intentionally or without awareness. If it is intentionally, there are two options. First, some parents will sleep with their child at first to replace the mask each time it is taken off. This is obviously stressful for the family and you would then need to work on fading yourself out of his bedroom again once your child learns that taking the mask off is not an option. If you think that your child is taking it off without realizing it (meaning in his sleep), then I would work with your CPAP team to see if your child needs a different mask, if you can use a sweatshirt to fish the tubing through to reduce the chance that it moves around and then your child takes it off.

2. Any tips for helping him wear a watch?

If your child has sensory issues around wearing a watch, I would start with having your child wear the watch during an activity where he is most distracted. The distraction can help reduce the focus on the feeling, resulting in him getting used to it. You can also use a visual timer to help him know just how long he has to wear it before he gets to take it off. Gradually increasing the time on the visual timer will help him get used to the feeling to the point where he no longer feels the need to take it off or isn’t bothered by it. You can use duct tape to secure the band too so that he can’t take it off for the short time that you are having him practice wearing it.

Christina, a parent in Kearney, NE:

1. My son chews on his glasses and has broken 2 pairs. What do I do?

I would consider speaking to an OT that specializes in sensory issues. They may be able to suggest other ways for your child to get oral input so that glasses aren’t used to get that input. Chewelry can be a great tool to consider using. Remember, your child won’t just start using the chewelry because they have it around their neck to chew on. You will have to teach them to replace the glasses with the chewelry. You would need to sit next to him during times that he is more likely to chew on his glasses. When he reaches for his glasses, you will need to redirect his hands to the chewelry.

2. My son also hides his glasses, we’ve lost 3 pairs. What should we do?

Kids can be so creative in how they “get rid of” glasses. I would review what are the highest risk times that he hides them (When in the car? When transitioning from one place to another? When playing alone in a room?). During those times, start out with full level supervision. Teach your child through routine that they can place their glasses in a case or give them to you if they need a break. That way, even if they “get rid of them” or don’t want to wear them for the time being, they can have control over asking for a break, rather than just getting rid of them.

Jenny, a self-advocate in Boise, ID:

1. If you fall asleep each night with your CPAP mask on, how can you increase the length of time you use it? The fit and pressure are adjusted so that’s not the problem. We’ve been using the mask nightly for 2 years but can’t get usage beyond a couple of hours.

I hate to suggest this, especially without knowing how old your child is, but many of our families will sleep in the room with their child so that they can replace the mask. The more practice your child has at night wearing it, the less likely they will take it off because they are used to the feel. I would suggest making sure that you are not laying in the bed, but maybe next to.

Sandra, a parent in Mission Viejo, CA:

1. My son has a BAHA that attaches magnetically behind his ear. He has so much anxiety when he wears it—but he can’t explain why. What insights do you have on if it’s a sensory feeling of the bone conduction or if it’s because he’s hearing more than he normally does.

Without being able to ask more questions about what behaviors your child exhibits when the BAHA is one, I would guess that it is probably because of the new sounds heard. To manage anxiety, be clear about how long your child has to wear the BAHA during the practice session. Then, when you see that your child looks startled or upset, label what sound your child may have heard. For example, you might say “Oh, it was loud when I closed the door, huh?” Remain calm as you label what you think your child heard.

Kristen, a parent in Laramie, WY:

1. How to get a cpap mask on a toddler without head thrashing

Have you tried modeling putting the CPAP on a doll or on yourself. Whether you put it on yourself or a doll, sing a song your child is familiar with. When the song is done, take off the mask. Then say “Your turn”. Your child knowing that practice is only for a certain amount of time can help reduce head thrashing.

2. Reward system ideas for young toddlers (almost 2)

Toddlers are at an age where they love social engagement. Social engagement like singing songs or playing with toys together is a great reward. Have your child put the equipment on during practice and then engage in play or singing.

3. Best ways to introduce glasses to toddlers

I typically introduce glasses to toddlers in setting where I would have more control and where it is less stressful, like mealtimes for some kids or during bathtime. They are distracted and you can simply remind them to put glasses back on in a more controlled manner. If your child does take them off during that time, without a big reaction, you would simply replace the glasses and then continue to play in the bathtub or continue to interact while feeding.

Anna, a parent in Arvada, CO:

1. How do we get our son to keep hearing aids on at school and other places that we can’t directly supervise him?

This would require a careful discussion with the school team about how hearing aid use impacts access to education on the IEP. In my experience, starting with use at school during a structured time when one on one attention can be given works best. Avoid starting in the louder settings like gym and the cafeteria.

2. What about when it is too loud in a restaurant/ cafeteria/ gym? He seems overwhelmed with his hearing aids on in places like that and we very often just take the hearing aids off preemptively. Is there a better way to handle extra loud situations?

I believe that louder settings require a slower desensitization process. Use a visual timer to help your child tolerate wearing the aids in these noisier settings for a short amount of time. That also allows you to end on a good note. Increase the amount of time they are worn in this setting over time as your child gets used to them. Some aids also have an app that allows parents to decrease the volume on aids in these louder settings. Teaching your child to advocate for themselves and to say it is too loud could then allow you to decrease the volume but keep the aids in.

3. He eats them!!! How do we get him to stop chewing on his ear molds when he takes them off!??

Look for something that has a similar texture that he can chew (chewelry for example). Remember, your child won’t just start using the chewelry because they have it around their neck to chew on. You will have to teach them to replace the glasses with the chewelry. You would need to sit next to him during times that he is more likely to chew on his glasses. When he reaches for his glasses, you will need to redirect his hands to the chewelry.

Allyson, a parent in Albuquerque, NM:

1. Our insurance expects compliance with our daughter’s CPAP to be at 6hrs per night 80% of the month to continue their coverage. We were able to extend it month to month but was causing so much anxiety for us parents. Any tips or ideas dealing with insurance so we can continue a gradual desensitization to her CPAP?

Unfortunately, the challenge that you have is one that I have encountered many times and unfortunately have not found any tricks to. We continue to advocate on our end and try to explain to medical supply companies all that we are doing to get the child to become complaint with wearing the equipment. Unfortunately, it is then up to them.

Danielle, a parent in Denver, CO:

1. We did a lot of CPAP practice/desensitization a year ago and our son accepts putting it on at bedtime. The issue is he repeatedly takes it off all night. The folks at the sleep clinic want us to continue to practice during the day but it’s hard to see how that will help with him keeping it on all night, and it’s just such a hassle to drag out every day. Is daytime practice really that effective in this situation?

It depends on why your child is taking it off. If your child is taking it off without knowing it (still asleep), daytime practice can be helpful, as it gets the child to become desensitized to the sensation or feel of the equipment, thus reducing the unconscious need to take it off at night. Some of our families will also gut it out for a few weeks and just sleep in the room with their child and replace the mask each time it is taken off.

2. Also, our son has ruined a couple of pairs of glasses by chewing on them. We’re only letting him wear the under complete supervision. As a result he wears it at school but hardly ever at home since it’s so easy to turn our back and then another pair of glasses is ruined. Any suggestions?

I would have your child play, relax, sit within line of sight when at home. Provide positive attention and praise for keeping his glasses safe. You may also need to give your child something different to chew on (chewelry) and continuously practice having your child chew on the chewelry instead of their glasses.

Laura, a parent in Midlothian, VA:

1. How would you adjust these steps for a child that has no concept of time (aka a 2 year old).

I would have practice occur during play time with your child. Put the equipment on and then begin playing. If your child reaches for their equipment or successfully takes it off, place your hand on the toy they are playing with or move the toy away and indicate that the equipment first must be put back on, and then you can continue to play.

2. Regarding CPAP if a child won’t accept pressure while awake is it a bad idea to put it on after they fall asleep, even if you are working to get them to accept during the day?

I am not a fan of putting it on when they fall asleep only because it can be even more distressing and alarming if your child wakes up in the middle of the night with it on their face. They will have a much more difficult time practicing when awake if they have this experience. That being said, I have many families who have done this and it is been fine.

Mary, a parent in Oakland, CA:

1. My son started off strong using his CPAP machine but after 10 or so nights he refuses to wear it. How do I start over?

Start over the same way you desensitized him the first time. That way, it is a familiar process. I would also think about what could have resulted in the refusal. It could be that he is testing whether you will stay first with the use of CPAP or it could be that he had a cold and that the CPAP was more distressing during that time. Either way, I would follow your previous procedure.

Tangi, a parent in Cranbaury, NJ::

1. How do you deal with insurance companies with cpap machines with the required amount of hours. they require at least 4 hrs which is long in the beginning.

Unfortunately, the challenge that you have is one that I have encountered many times and unfortunately have not found any tricks to. We continue to advocate on our end and try to explain to medical supply companies all that we are doing to get the child to become complaint with wearing the equipment. Unfortunately, it is then up to them.

Important Notice

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