We had the privilege of hosting three remarkable guests on WCNC’s Charlotte Today program. They discussed Down Syndrome Awareness Month and our upcoming Buddy Walk. Whenever the opportunity arises, we are always eager to educate the community about Down syndrome.
Thank you to Brooke Fields Christenburg, Lincoln, and Cody for representing the Down Syndrome community.

Guest blogger Michele Mattox provides lots of essential and sage advice to help address mental health challenges for our loved ones with Down syndrome

If you have lived with someone with Down syndrome you know that it is a MYTH that they are always happy. Individuals with Down syndrome experience a variety of emotions and may demonstrate symptoms and behaviors related to depression, anxiety, and other mental health diagnoses.

 

Everyone with Down syndrome is a unique individual but there are common characteristics often seen across the Down syndrome population. Some of these characteristics and their potential impact on mental health are listed below:

 

• Perceptive of Others’ Emotions: I have had several families tell me that their loved one has a “6th sense” when it comes to detecting others’ stress and always seem to know when someone needs comforting. This highly perceptive nature can also negatively impact individuals with Down syndrome. If anyone else in your home is struggling with their mental health, sometimes family members with Down syndrome will mimic others’ behaviors and emotions and appear stressed or depressed themselves.

• Prefer Sameness: Dr. Chicoine and Dr. McGuire use the term “the groove” in their book, Mental Wellness in Adults with Down Syndrome, 2nd Edition, to describe routines that individuals with Down syndrome often use to function. The routines can promote independence; however, if the routine has become too rigid or they have gotten stuck in a negative routine, it may be more difficult and take more time to transition back to healthy living habits.

• Difficulty Recognizing Passage of Time: When remembering a negative event, for example, a death, your family member might experience strong emotions like the event that occurred yesterday as opposed to several years ago. Sometimes just the mention of a similar negative event in someone else’s life will elicit these strong emotions as well.

• Strong Long-term Memory: Although this is often viewed as a strength, when it comes to traumatic events, being able to recall every detail of the event may in fact make it more difficult for your family member to move through the grief process.

• Self-Talk: Many individuals with Ds talk to themselves in a way that is audible to others. This behavior is often used to process feelings and plan out their day. If the language and/or tone changes and becomes angry or they seem “stuck” in the conversation, it may indicate that they are experiencing pain, stress, or are bothered in some way.

• Medical Conditions: It is important to have a medical exam prior to or in addition to receiving mental health treatment. Physical illnesses can present as behavior changes or as mental health symptoms. Sleep disturbances, thyroid or gastrointestinal issues are often seen in individuals with Down syndrome and may present as irritable, depressed, anxious or lethargic behaviors.

 

Did any of the above sound familiar? If so, you may find comfort in the fact that most of the behaviors are typical of individuals with Down syndrome and intervention is not always necessary. If you decide to seek counseling, it is important that you find a clinician that is familiar with Down syndrome so that your family member is not misdiagnosed or over-prescribed.

 

In working with clients with Down syndrome, I have observed the importance of treating the whole individual. Mental health, physical health, healthy relationships, and meaningful opportunities all work together to promote a healthy and happy life. Listed below are skills and focus areas that I often address in counseling with my clients. I have provided examples of activities to assist your family member in developing these skills. Please note, this list is meant to provide ideas for self-help and should not be used as a substitute for therapy or mental health care.

 

Focus on the Whole Person- Mental Health Target Areas Include:

1. Cognition– Dr. Brian Skotko has a “Brain Train Video Series” where he discusses ways to boost cognition. Some of his recommendations include open-ended questions in short 5-minute conversations, brain exercises to include activities like word searches and matching games, and of course healthy eating, physical activity, and socialization…more on those later!

 

2. Self-advocacy– Strong self-advocacy skills often increase confidence. Talk to your loved one about their goals. Have discussions and help them identify their strengths, struggles, likes and dislikes. Normalize asking for help and role-play appropriate ways to do this. Let them know that it is always ok to speak up for themselves if something is happening that is making them uncomfortable. Practice problem-solving and conflict resolution using “what if” scenarios.

 

3. Psychoeducation– Many of my clients have been empowered after simply learning about their diagnosis and its related symptoms. Provide education about mental health, why it is important, and what factors in our lives work together to keep us healthy and happy. It is also helpful to teach healthy living habits in general and how exercising our minds, keeping our bodies active, maintaining an organized environment, and focusing on others can bring us joy.

 

4. Emotional literacy– This area focuses on increasing one’s ability to express emotions. Have your family member practice using feelings words. Provide them with a list of these words or a visual showing facial expressions related to various emotions. Individuals with Down syndrome are often visual learners, help them learn more about their own emotions by identifying the feelings of others in movies, on tv, and out in the community. You can also use mainstream games to increase discussions around emotions. In UNO or Candyland, depending on what color you land on, discuss a different emotion. (Ex. Red- tell me about a time you felt angry. What did you do to make yourself feel better? Blue- a time you felt sad. Yellow- what makes you happy.) Use JENGA blocks as conversation starters by writing questions on the blocks. Each time the player removes a block they must answer a question or discuss what is on the block.

 

5. Coping skills– A few common calm-down techniques are listed below. It is recommended that you introduce these activities when your family member is calm, not after they have already become upset. Try practicing these skills at bedtime…maybe the exercise will help them sleep! I suggest putting together a coping skills folder of visual aids… no matter the family member’s age or abilities. In a time of frustration, minimal conversation is best. Simply reference the calm-down folder as a reminder to use these tools. Resources for visuals are listed below.

 

• Deep breathing– teach your family member to breathe in through their nose like they are smelling a flower and blow out through their mouth, like blowing out birthday candles.

• Muscle relaxation– squeezing a stress ball or giving yourself a big hug. The key is recognizing the difference between when your body is tense versus relaxed.

• Grounding– we often stress over things that happened in the past or are coming up in the future. Grounding helps us focus on the present and our current surroundings. Practice the 5-4-3-2-1 method: look around and identify 5 things you can see, touch 4 things, identify 3 things you can hear, notice 2 things you smell, and say 1 positive thing to yourself.

• Gratitude Practice– make a list of 3 things, people, places, or activities that bring you joy. The list can be written, texted in the notes of a phone, or voice recorded to modify the exercise.

 

6. Relationships, Boundaries & Sexuality Education– this could be a separate blog post of its own! I have found that many of my clients initiate counseling due to some sort of relationship/social issue. Because of this, I include relationships, boundaries, safety and communication lessons as part of the counseling process. Struggles that I have encountered frequently and brief descriptions of what I try to do to help are listed below.

 

• Isolation– assists in connecting with the community.

• Few meaningful relationships– identify characteristics of healthy and unhealthy relationships and assist in developing friendship skills.·

• Misunderstanding boundaries with coworkers and peers– Circles Curriculum and PEERS role-play practice.

• Desire to have a sweetheart– talk to them about how relationships develop – everything from having a crush, flirting, dating, healthy vs unhealthy behaviors, communication, and breaking up.

• Internet safety– only converse with friends and family you have met in real life. Never give anyone money or personal information over the Internet. Celebrities will not ask to chat with you privately.

• Increased risk of sexual abuse– sex education is about understanding consent, the right to say no, appropriate names for private parts, sexual acts, and safety planning.

 

7. Community Connections– if my clients are at home with little to no peer interactions or involvement in meaningful activities, they will still be depressed. Counseling and medication can go so far, but I often enlist the family’s help in connecting my clients with programs, activities, and peers.

 

 

As Chris Nikic (1st person with Down syndrome to complete an IRONMAN) would say, set a goal to get “1% Better Each Day.” Make small changes in routines, implement one activity at a time, and do not feel pressured to introduce all target areas at once. Remember, it is never too early or too late to address these skills… lifelong learning is key!

 

 

 

References & Resources:

• Dr. Skotko video series- https://www.downsyndromebraintrain.com/products

• Mental Wellness in Adults with Down Syndrome, 2nd Edition. Free PDF- https://adscresources.advocatehealth.com/mental-wellness-in-adults-with-down-syndrome-2nd-edition/

• Adult Down Syndrome Center Resource Page-https://adscresources.advocatehealth.com/search/people-with-down-syndrome

• DSCBA Mental Health Padlet- https://padlet.com/DSCBA/dscba-mental-health-alliance-ottzudfzmka3q8n7

• YouTube mindfulness videos-https://www.youtube.com/results?search_query=mindfulness+videos+for+teens

• Circles Curriculum- https://stanfield.com/product/circles-curriculum-bundle-w1004-38/

• PEERS Role Play Videos- https://www.semel.ucla.edu/peers/resources/role-play-videos

• Relationship & Sexuality Education- www.amaze.org

• No Limits Counseling Website: www.nolimitscounseling.org

 

 

 

Michele Mattox, LCSW, LISW-CP.

Michele is a Licensed Clinical Social Worker in North and South Carolina. She founded No Limits Counseling & Coaching, a private practice that was developed specifically for teens and adults with I/DD. She provides virtual mental health counseling to individuals with Down syndrome throughout NC and SC. Michele also offers relationship coaching in the form of groups by partnering with disability organizations. Group topics include: Relationships, boundaries, friendship, dating, and sexuality.

Michele is closely connected to the Down syndrome community and spent many years volunteering at various non-profits in the Charlotte area. It was during this time that she realized the need for more mental health professionals that are familiar with and can connect with individuals with Down syndrome. Michele’s experience in the disability community over the last 20 years has given her insight into mental health and relationship struggles often experienced by individuals with Down syndrome.

Pediatric physical therapists are movement specialists who work with children of all ages and all medical conditions. One of our main overarching goals is to help progress a child’s motor development in order to improve their independence and safety with activities of daily living and to increase their participation in client-specific activities. A physical therapist (PT) provides hands-on care with individualized exercises and incorporates client-specific goals into treatment sessions. If you are wondering how physical therapy can help children with Down syndrome improve their quality of life, independence, and participation, then read along!

Children with Down syndrome have several musculoskeletal differences contributing to a delay in motor development. The most significant difference is due to hypotonia (low muscle tone) and ligament laxity (looseness), characteristic of Down syndrome. Hypotonia is distributed to all major muscle groups, including the neck, trunk, and all four extremities.

The following lists some common neuromuscular impairments in Down syndrome and how each impairment can limit a child functionally:

1. Hypotonia and low force production  →Low muscle tone has been highly correlated with a delay of gross and fine motor skills and in other areas such as speech acquisition and cognitive development. Low muscle tone can lead to decreased interest in movement activities and decreased overall fitness.

2. Joint hypermobility → Can cause anxiety with movement and feeling unstable while holding static positions (like standing on one leg). Ligament laxity can result in flat feet, knee cap instability, a curvature of the spine called scoliosis, and atlantoaxial (A-A) instability. A-A instability is caused by laxity of a ligament in the upper neck joints and is present in 10 to 20% of children with Down Syndrome. The laxity results in excessive motion of the first two cervical vertebrae. Only 1-2 % have symptomatic A-A instability and will need medical attention.

3. Slow automatic postural reactions → Can cause balance limitations, slow reaction time, and decreased task completion speed.

Children with Down Syndrome can receive physical therapy intervention across the lifespan. For example, physical therapists can help with the following:

(1) an infant to achieve motor milestones such as sitting up and crawling.
(2) a toddler to walk independently and later on to safely go up and down the stairs
(3) a teenager to work on specific motor skills and improve fitness needed for community, vocational or recreational activities.
Physical therapists do not directly treat medical impairments such as hypotonia or joint hypermobility. Instead, we treat the child as a whole to address the functional limitations. For example, PTs can help a child improve their joint stability by strengthening the muscles around the joints and practicing activities that will enhance proprioception, which is the awareness of a common position in space.

In addition, physical therapists can help a child with Down syndrome by:

• teaching caregivers appropriate positioning and handling activities for their infant or child to promote postural control and weight bearing.
• designing activities to encourage the development of antigravity muscle strength in all positions.
• encouraging dynamic rather than static exploration of movement.
• collaborating with other interdisciplinary team members to enhance cognition, language, and socialization development.
• teaching family members and other team members activities and position choices that will enhance the child’s overall development.

If you feel that physical therapy will benefit your child or are unsure if your child would help, I highly recommend setting up an evaluation with a pediatric PT! Please get in touch with a local pediatric physical therapy clinic, or ask your child’s pediatrician to make a referral for a PT evaluation. At Child and Family Development, we also offer a 30-minute motor development readiness check from our physical therapists; no referral is needed. Please get in touch with either of our offices if you have any questions relating to your child’s development.

Scott Harvey, MPT
Physical Therapist

www.childandfamilydevelopment.com

Reference:
Campbell, S. K., Palisano, M. N., Orlin, M. N., & Schreiber, J. (2017). Campbell’s physical therapy for Children |physical therapy for Children. Elsevier.

When Meg Robertson opened her garage door this morning, she expected to find a friend who’d driven up to join her for a walk as Meg recovered from a double mastectomy. The person she saw standing there was a complete stranger who immediately made her smile.

Brodie Rummage is a 9-year-old who, like many kids, loves books and dinosaurs. But Brodie also celebrates something that makes him a bit different from most other kids: He has Down syndrome. He’s now a self-advocate for the Down Syndrome Association of Greater Charlotte and — even at a safe distance of well more than six feet away — Meg saw Brodie’s smiling face and matched his grin with her own.

Brodie put on his mask and came closer, because he was holding a surprise delivery for her. A dear friend purchased a dozen, delicious doughnuts; a bag of fresh-roasted whole bean coffee; and a goody bag to be delivered directly to Meg as a much-needed boost. Meg quickly learned these were no ordinary treats as part of an effort that came out of these extraordinary times.

Donate for Doughnuts (bit.ly/donatefordoughnuts) is a pandemic-prompted event by the Down Syndrome Association (DSA) of Greater Charlotte. “We couldn’t hold our biggest annual fundraiser — The Greater Charlotte Buddy Walk — in person due to COVID-19 so we created this delivery deal to bring the Buddy Walk spirit to your business or home,” says Holly Zipperer, executive director of the DSA of Greater Charlotte. “We’re also supporting local businesses that employ people with disabilities in a time when so many small businesses are struggling.”

Charlotte (NC) teenager Reid Foreman is learning the family coffee roasting business at HÆRFEST COFFEE (pronounced “harvest”). His dad, Toby, is a former Major League Baseball pitcher who fell in love with the coffee industry years ago while recovering from elbow surgery. When Toby’s wife, Cheri, gave birth to Reid and received his Down syndrome diagnosis, they promised each other to move forward on HÆRFEST COFFEE because, “Reid and his friends will need jobs someday,” recalls Toby.

Inside the goody bag, Meg found an offer for The Filter Box, an air filter subscription service that’s based out of Charlotte but serves clients across the country. Kennedy Boone is only a kindergartner, but she’s already learning to help her parents, Brendon and Betsy, with the family business as they prepare to hire employees with intellectual disabilities as their company grows. Kennedy, who has Down syndrome, tags along when possible as her dad delivers perfectly-timed boxes of air filters at the size and quantity you need, right on time to remind each you to change the dirty ones in your home. Kennedy has a twin brother, Jacob, who does not have Down syndrome, and their parents want to make a future where both will have similar opportunities to thrive. “We’re changing the systems so that Kennedy and Jacob can both benefit from a quality education, live independently as adults, pursue meaningful work, and contribute to their chosen communities and neighborhoods with our nonprofit KennedyStrong, which receives a portion of each purchase from The Filter Box.”

The DSA of Greater Charlotte supports preparation, training, and opportunities for employment for people with Down syndrome, so it pulled together these three local businesses to partner with on the Donate for Doughnuts fundraiser. And it’s a 100% good deal: 45% goes to the DSA of Greater Charlotte to help make up for lost Buddy Walk donations that provide for yearly programs and services, while the remaining 55% goes directly to Down for Doughnuts and HÆRFEST COFFEE to pay for the treats.

The “Sweet Spot Package” is 1-dozen glazed doughnuts delivered to your business or home for $25, while the “Better Together Package” is 1-dozen glazed doughnuts plus a 12 oz. bag of whole bean coffee delivered to your home or business for $40. Lisa Ciaravella, a Realtor with Kindred Realty, bought packages for delivery as a corporate “thank you gift” to nine of her clients who closed on new homes this year. “We wanted to give our clients a unique gift they’d enjoy, that supports people with disabilities, which is an effort close to our hearts,” says Lisa, whose family also owns Phoenix Physical Therapy and Sports Performance which helps patients with physical disabilities.

There are still openings for doughnut and coffee deliveries this December 18 and 19, the last two dates of this pop-up fundraiser. Brodie’s mom, Kathy Rummage, who’s the driver for her young delivery guy, says the smiles they’ve collected at each stop along the way, are well worth the miles. But she’s most optimistic about the gift that didn’t come inside a box or bag.“One of the goals of Donate for Doughnuts is to bring people with Down syndrome to the greater community, to people who haven’t had the chance to meet, talk, and laugh with someone who’s differently abled,” she says. “It’s vitally important our kids have better exposure in their neighborhoods, towns, and schools so their neighbors and peers will be able to recognize their ability first. What a better way to create those relationships than over doughnuts and coffee!”

By Dr.Shruti Mittal, MD FAAP

Dr. Mittal is a developmental and behavioral pediatrician in Charlotte, North Carolina specializing in child development, developmental and behavioral conditions such as ADHD, autism spectrum disorder, genetic syndromes, and other learning difficulties. As a developmental pediatrician, Dr. Mittal can evaluate your child’s overall development, provide behavioral and educational assessments, and recommend specific treatment plans, while also offering ongoing support to children and families. She is the director of Shine Bright Developmental and Behavioral Pediatrics. 

Developmental-Behavioral Pediatricians (DBPs) are doctors who have completed:

• Medical school (4 years)
• Pediatric Residency (3 years)
• Board certification by the American Board of Pediatrics (ABP)
• Additional subspecialty fellowship training in developmental and behavioral conditions (3 years)

DBPs are board certified pediatricians who have completed an additional 3 years of training in developmental and behavioral conditions. DBPs are required to spend time learning from a geneticist, which is not required for a general pediatrician. A DBP is a subspecialist, just like a pediatric cardiologist or gastroenterologist, and doesn’t replace the care offered by a regular pediatrician because they don’t do routine sick visits or administer vaccines.

The care for children with Down syndrome can be complex. There are many different health conditions that require ongoing screening and monitoring, such as hypothyroidism, hearing loss, obstructive sleep apnea, and GI problems such as feeding difficulties, reflux, and constipation, to name a few.  Many DBPs have experience working in clinics that specialize in providing holistic medical care for children with Down syndrome. For example, where I trained at the Medical University of South Carolina (MUSC), we had a birth to 5-year-old clinic and a school age/transition clinic for patients with Down syndrome.  The clinics had an interdisciplinary team, including an ear nose and throat (ENT) specialist, a physical, occupational, and speech therapist, as well as a psychologist.

On your initial visit, a DBP will review your child’s medical, developmental, educational, behavioral, and family history. They will usually ask to review any previous evaluations your child has had. A medical exam will be conducted, and your DBP will consider the need for additional laboratory, imaging, or genetic testing. Additionally, a DBP will talk to you about the possibility of diagnostic behavioral and developmental testing/evaluations, which may include gathering more information from teachers or performing behavioral assessments like autism and ADHD evaluations.

Children with Down syndrome are at an increased risk for autism, ADHD, and other behavioral differences. DBPs can perform medical evaluations, and prescribe appropriate medications if needed, to help a child with behavioral differences thrive.

The need for follow up depends on the child and needs of the family. For example, some lab tests, such as a TSH and hemoglobin, should be obtained every 6 months to a year, and your pediatrician can order these for you. Typically, a DBP will perform a gross motor, fine motor, language, and behavior screening assessment every 6 months when children are less than 5. For older patients, you may see a DBP every year. If your child is taking a medication for behavioral concerns, your DBP will usually want to see you every 3 months.

DBP should typically perform an assessment of adaptive functioning, or skills of daily living, once a child is of transition age at 13. A DBP also has experience in other transition age topics, such as guardianship and postsecondary inclusive education programs.

The American Academy of Pediatrics (AAP) developed health supervision guidelines for children with Down syndrome in 2011. Ask your pediatrician if they are familiar with the guidelines, because they review the medical, developmental, and behavioral screenings that are needed for a child with Down syndrome. I’ve included a summary of the main recommendations, organized by age of the child, along with this post.  The full guidelines can be found at here.

DBPs celebrate neurodiversity in children. They are highly trained and experienced in identifying a range of developmental and behavioral differences. They can help children with Down syndrome succeed by advocating for support systems at home, school, and other social environments. Because of their experience with genetics, working with therapists, schools, and psychologists, and their background as pediatricians, they have extensive knowledge about services available to help children reach their full potential. DBPs understand state and federal policies surrounding children with disabilities and can help you advocate for an inclusive education, or a less restrictive environment. For instance, a DBP can review your child’s IEP, determine what accommodations have been tried previously, and provide a letter of support with additional recommendations. Sometimes a call to the school can be helpful.

In summary, you may find meeting with a DBP helpful if you have a child with Down syndrome. You can find a list of DBP physicians here.

Down Syndrome Healthcare Guidelines

Children with Down Syndrome are at an increased risk for many comorbid conditions, therefore the AAP released 2011 Guidelines for providers. In brief, the population of people with Down syndrome have a higher risk for the following conditions and should be screened for them:

• Hearing Loss (75%)
• Obstructive Sleep Apnea (50-79%)
• Otitis Media (50-70%)
• Eye disease (60%); cataracts, severe refractive errors, strabismus
• Congenital heart disease (50%); most common is endocardial cushion defects
• GI problems (atresias – blocked or absent passageways; 12%) and feeding difficulties Most common: duodenal atresia, TE fistula, Hirschsprung’s, reflux, constipation
• Congenital hypothyroidism
• Anemia, transient myeloproliferative disorder, leukemia
• ADHD, Autism
• Hypodontia and delayed dental eruption (23%)

At Birth:

• Obtain ECHO to rule out cardiac abnormalities
• Hearing test
• Genetic testing – chromosomal analysis and microarray
• Hemoglobin/Thyroid

6 months:

• Pediatric Ophthalmologist to check for strabismus, cataracts, nystagmus
• Repeat TSH/T4/Hemoglobin/Ferritin
• ABR Audiology evaluation

Annually:

• Ophthalmology appointment
• TSH/T4/Hemoglobin/Ferritin/CRP
• Audiology Evaluation until 4 years of age
• Sleep study at age 4
• Assessment of therapies/developmental progression
• Assessment of behavior and obtain behavior checklists at age 4
• Dental check up

Health Supervision for Children With Down Syndrome

Marilyn J. Bull, the Committee on Genetics

Pediatrics Aug 2011, 128 (2) 393-406; DOI: 10.1542/peds.2011-1605

One of the most frequent culprits of angst and worry for parents of children with Down syndrome is sleep. We worry they aren’t sleeping well, or long enough, or that they can’t seem to fall asleep or stay asleep. Sleep issues can affect their overall wellness, their behavior, their schooling and their mood. It certainly affects our mood as parents! In this article and the following Q&A, we hear from a pediatric sleep specialist, Dr. Thomas Stern, who talks about how we can tackle our worries and what role sleep studies and CPAP machines can play in our children’s lives. It’s not as hard as you might think! My 11-year-old son sees Dr. Stern, who diagnosed him with mild sleep apnea. He uses a CPAP successfully and its use has improved his overall stamina and energy level. – Vicki Vila, parent and volunteer blog editor

By Dr. Thomas P. Stern, MD, MS, FAASM, FCCP

Several times a month I meet a very distraught parent for the first time with the complaint “my child just doesn’t sleep.” They are always accompanied by a child that is conscious and breathing. I reply that their child must be sleeping, because if the child wasn’t sleeping at all, they would be dead within two weeks. That comment is not usually well received, but I feel it is an important point to make. I follow up that statement with a question of my own: “If I came in the room and told you that I have not been breathing the last two weeks would you believe me?” Most of the time I receive an answer like “of course not.” I then ask why and they reply, “Because you would be dead.”

Both breathing and sleep are essential human functions for life. Without them, we die. The good news is that these two functions are not optional. Humans cannot hold their breath until they die. At worst you will pass out and start breathing again. Humans cannot sleep deprive themselves until they die. You will fall asleep standing up before that happens.

(There are in fact very rare disease states that are exceptions to the above paragraph.  But one is diagnosed during infancy and the other is a disease of adults. These are not relevant to patients being seen in an outpatient pediatric setting.)

There are clear differences in sleep between children with Down syndrome and children who are developmentally typical. There is a well-described association between Down syndrome and sleep apnea. The association was first described in the late 1980’s. There are several explanations for this association, including low muscle tone and consistent craniofacial features. Children with Down syndrome can also possess risk factors for sleep disordered breathing, which are not unique to the syndrome, such as tonsillar enlargement, obesity and heart disease.

Despite the increase in baseline risk for sleep apnea in children with Down syndrome, not all children with Down syndrome have it. The estimated prevalence for sleep apnea in children with Down syndrome is anywhere between 25% and 75%. This is clearly increased related to the general pediatric population, where the prevalence is around 2%. The variation for the reported prevalence is due to an absence of a standardized definition of pediatric sleep apnea.

This association between Down syndrome and sleep apnea complicates drawing conclusions between Down syndrome and other sleep abnormalities. Sleep apnea makes sleep architecture abnormal.  Patients with sleep apnea experience more arousals, more movements and decreased proportions of REM sleep. Any research on sleep architecture in children with Down syndrome that does not control for sleep apnea is of limited value. Unfortunately that leaves very little data from which to draw conclusions about other co-morbid sleep disorders.

There are a few conclusions that can be drawn despite this lack of control. There are several studies to support that circadian rhythms are intact in children with Down syndrome. These studies were designed comparing children with Down syndrome to neurotypical controls. The studies used measures of movement and also hormone secretion. This suggests children with Down syndrome can have normal sleep/wake patterns when underlying sleep disorders are addressed.

I personally do not approach pediatric sleep patients with Down syndrome any differently than pediatric patients without it, with the exception of having a high index of suspicion of sleep apnea. Once sleep apnea is ruled out, my approach to a pediatric patient with Down syndrome is the same as my approach to a neurotypical pediatric patient regardless of the complaint. Other sleep disorders such as narcolepsy, sleep related seizures, or a movement disorder such as parasomnia or restless legs syndrome need to be considered.

While neuropsychiatric disorders such as autism, anxiety, post traumatic stress disorder, etc. will have sleep manifestations, they are not considered primary sleep disorders and treatment should focus on the underlying disorder. Unfortunately, pharmacologic treatments for these disorders often have adverse effects on sleep. Psychiatric medications can be sedating and thus cause sleepiness, or stimulating, thus preventing sleep. If your child is on a medication that affects sleep, you are stuck between a rock and a hard spot. You will have to work with the healthcare provider to find a balance between effect and side effect.

Parents seem to put all of their focus on when children go to sleep. If children don’t go to sleep on command, they conclude there is a problem. If a child does not go to sleep when the parent wants, it creates anxiety for the parent and this is often communicated to the child. The parent gets upset, the child gets upset and no one sleeps. There are a few things in life you cannot force your child to do. One of them is sleep. If you try and force your child to sleep, you are guaranteeing yourself failure.

Sleep Tip #1: Do not focus on when your child sleeps.  Focus on when they stay awake. The longer a human is awake, the more likely they are to fall asleep and stay asleep. It is just how the brain works. If you do not feel your child is sleeping well at night, do not let them sleep during the day. Conversely, if your child must sleep during the day, make their bedtime later. It is abnormal for school-aged children, about age 5 and up, to nap during the day. In fact if they need to nap, they are either sleep deprived or they have a sleep disorder. Recommended sleep times vary by age and can be found here: (https://www.sleepfoundation.org/press-release/national-sleep-foundation-recommends-new-sleep-times). If a child wakes at night, either their sleep drive is not being optimized or their sleep is being disrupted. Sleep disruption can be caused by medications, environmental factors and sleep disorders.

The human brain is designed to sleep at night and be awake during the day. It is very influenced by light. While you cannot control the sun and the moon, most households have direct light sources that influence sleep. Direct light sources are lights that you look into such as televisions, computers and cell phones. Tip #2: Do not let your child use a direct light source within 90 minutes of bedtime. Using a direct light source within 90 minutes of bed can delay sleep onset. Teenagers seem to be the most susceptible. Likewise, if you want to promote an earlier bedtime, expose your child to a bright light (sunlight is the best) soon after they wake up.

The third major sleep promoter is the amount of physical activity your child has during the preceding wake period. Tip #3: Keep your child as physically active during the day as possible.  Studies have shown the more “screen time” children have during the day, the poorer their sleep quality is. Physical activity is best earlier in the day. I would discourage intense physical activity within 2 hours of bedtime, but plenty of children that are physically active all day can get in bed and fall asleep soon after.

If a child that stays awake all day, is physically active during the day, avoids sleep preventers (medicines, lights, noise, etc.,) and is unable to sleep, then it would be a good idea to see a pediatric sleep specialist.

Dr. Stern practices at Advanced Respiratory and Sleep Medicine, with offices in Huntersville and Hickory, NC. He completed a residency in internal medicine and pediatrics and fellowships in pulmonary medicine, critical care medicine and sleep medicine. His pediatric sleep medicine training was at Rainbow Babies and Children’s Hospital in Cleveland, OH.

Ask the Sleep Doctor: Some of Parents’ Most Frequently Asked Questions

1) Is it still recommended for a child with Down syndrome to do a sleep study even if they don’t exhibit specific concerns? At what age?

Yes – it is recommended that all children with Down syndrome get a sleep study by 4 years of age. Children should have the study with or without symptoms because children with Trisomy 21 may not have traditional symptoms.

2) What would be considered concerning symptoms?

Snoring, restless sleep, waking unrefreshed, frequent or early arousals.

3) What can the short- and long-term effects of untreated apnea be?

Short-term effects are manifestations of sleep deprivation including irritability, inattention, and hyperactivity.  Longer-term effects are growth retardation and cardiovascular complications.

4) A few parents said they’ve had multiple sleep studies done and results were inconclusive. The parents report they feel their child DOES have sleep issues and they wonder if there are other ways to get sleep data besides a sleep study if those are inconclusive.

I highly recommend patients only be studied in a place with people formally trained in pediatric sleep.  There is a significant difference in performing and interpreting pediatric studies and adult studies.  People not trained in pediatric sleep don’t understand this. The only way a sleep study would be inconclusive is if the child does not sleep.  It is important keep the child awake and active the day before the study so they will sleep.  There is no other way to get good data on children other than a traditional sleep study.

5) Some parents report that their children cannot do sleep studies because the child flops around too much, the wires or nasal cannula keep coming off and they simply can’t sleep, so technicians end their studies without data. What would you advise a parent whose child struggles with the studies? Some have asked if it is all right to sedate children for a sleep study?

I would never recommend a study that involves sedating children.  If the child sleeps and they are at a good pediatric center, there will not be inconclusive data. A nasal cannula is not necessary to do a sleep study. There are options that are better tolerated than the nasal cannula — such as thermistors and RIP-sum belts.

6) Some parents wonder if it’s worth doing a sleep study if they’ve already had their child’s tonsils and adenoids out, and they feel that their child won’t tolerate a CPAP. Are there other “end results” or recommendations that can come out of a sleep study besides CPAP?

There are other options for treating sleep apnea in children.  Maxillary expansion with orthodontia can be very helpful. Treating nasal congestion with medicine can also be helpful. Restless legs or hyperactivity is traditionally a clinical diagnosis that should lead to a ferritin level check. It certainly can manifest on a sleep study.

CPAP, though, is currently the only treatment for apnea that is guaranteed to work and is covered by insurance.

Parents have different levels of effectiveness with children, whether it is CPAP or eating vegetables.  In order to implement PAP, you must have parents that are willing to be insistent and persistent.  The kids will wear it.

7) So what CAN parents do if their child is not tolerating the CPAP?

Optimizing the CPAP setup – in terms of settings and mask – is important. Most medical equipment companies have no idea what they are doing with adults, let alone children, so it is important to work with the pediatric sleep physician to troubleshoot.  Patience and persistence is key.

The initial goal should be brief nightly exposure. Get the child to put it on every night for a few minutes. Reward them if they keep it on 15min, 30 min, etc.  Then make the reward if they fall asleep with it on. Teaching them to fall asleep with it on is the main hurdle. Once they can do that, they will usually wear it for several hours.  It is not important that they wear it 100% of the time.

When you go to follow up appointments with your sleep doctor, they will look at the compliance and efficacy data from your machine to see how long your child has kept the mask on each night. Good compliance is considered an average of at least 4 hours on most nights.

Once your child is able to fall asleep with the mask on, check and readjust before you go to bed yourself, but you do not feel the need to get up in the middle of the night to put it back on.

8) Going along with this, what are the other, newer options they can explore after they’ve given CPAP a good try? There is a procedure called the hypoglossal nerve stimulator, for example, that is being studied in adults. Some parents ask if prescription medications could be given along with the mask to help their child sleep better.

Nerve stimulators are much less effective in adults than CPAP.  It involves a surgery and there are significant side effects.  There are no clinical trials in children — only case series. I would not recommend in a child until there is more data.  I would never sedate a child to wear PAP.  If the set up is reasonable, children will wear it with insistence and persistence. I have seen a lot of crazy setups in patients that come from labs that don’t know how to treat children. If they have not seen a pediatric sleep expert, they have not failed yet.

9) Can a child with Down syndrome be given melatonin to help promote sleep? If so, how would parents know the correct dosage?

As I mentioned previously, research suggests that circadian functions are intact in patients with Down syndrome.  The only one that specifically looked at 24-hour melatonin levels showed no difference in mean levels when compared to neurotypical controls (https://www.ncbi.nlm.nih.gov/pubmed/8648562) so melatonin supplementation should not be necessary. I do not think melatonin will hurt though.  When using melatonin, it is important to give it at the same time every night in conjunction with a good sleep/wake schedule. Consult your pediatrician to discuss a starting dosage.

10) We have some in our population with very severe, even life-threatening apnea, including adults with Down syndrome. Do you have any advice for this population?

The difference between the child and the adult is that you usually have to deal with the adult in a direct manner. This is tough.

Again, #1 is optimizing set up. I wear CPAP every night and routinely see adult patients with setups I could not wear. Using auto-titrating machines is important because it allows people to start with very low pressures.  Auto-titrating machines are more expensive to the medical equipment company so people will hesitate to prescribe them.  Letting the patient choose the mask is also very important.  Too often patients are give masks that optimize profit rather than provide comfort.

Finally, getting the patient to believe in the need for PAP is absolute.  If an adult does not want to wear PAP (or comply with any other therapy) they won’t.

Try modeling yourself wearing a mask before bed. Be succinct and encouraging.

“I know wearing CPAP is hard, but it is very important for you health. You can do this. We want you to be healthier and feel better.”

 Patients with Down syndrome and caregivers of patients with Down syndrome are faced with a lifetime of unique health challenges that can be very serious and stressful.  Dealing with sleep disorders is very rarely serious and should not be stressful. The first step is to partner with healthcare providers who are trained in and comfortable with addressing the issues you are struggling with.  It is also important to understand that there are no “magic pills” and dealing with sleep problems will require patience and persistence from the patient, the caregiver and the healthcare provider. – Dr. Thomas P. Stern

Earlier this summer, Christa Robaina, Charlotte chapter chair and a parent mentor for The Autism Community in Action, wrote an article for Charlotte Parent Magazine about her own experience with scholarship and educational grant programs in North Carolina. It’s very informative and easy to read, so please check it out if you are considering options other than public school for your child with Down syndrome.

Read her article below, and please join the Facebook group Special Friends Connection – Charlotte Area: It’s a group of local parents and professionals, many of whom submit articles for the Charlotte Parent blog. They are creating a community to offer support, advocacy and share information about local events and opportunities for families whose children have special needs.

(If you live in South Carolina, check out this link for more information about educational scholarships available in your state.)

North Carolina Scholarship and Grant Programs Providing More Education Options for Children with Special Needs

BY CHRISTA ROBAINA

Sending my first born off to kindergarten was filled with a level of angst and an amount of research that rivaled any college search. I remember watching other moms at transitional kindergarten (TK) graduation, swap contact info and discuss teachers because they knew their kiddos would be attending kindergarten at the same school that upcoming fall.

I wasn’t in that circle of moms. I knew the schools my family was considering for our son with special needs, but had no idea which one we would finally land on and that not-knowing weighed heavily on my mom heart. I cannot overlook the privilege we had of having so many options in our city, but the struggle to select the best fit was real.

Making the Best Choice for Your Child

As a mom of three, and especially as a parent of a child with special needs, experience has taught me that all children have unique learning styles and environments in which they thrive. We applied to kindergarten at several charter schools, a language-immersion program, a public school and a private school (and don’t think homeschool and co-ops weren’t swimming in my head too). We simultaneously had the added steps many parents of children with special needs have: Walking through the process of kindergarten transition and evaluation to maintain our Individualized Education Plan (IEP), and explore what support services might be needed and provided in different school environments. It was a very intensive process and year.

We now have a rising third grader, and I have the opportunity to share with other families about the state scholarship and grant programs my family discovered on our journey, and some of the considerations to walk through as you look at the school options available to children with special needs.

Continue reading…

by Lisa Smalls

Quality sleep is particularly hard to achieve for children with Down syndrome, where symptoms often persist into adulthood. According to the National Institute of Health, 76% of children with Down syndrome experience difficulty with the onset of sleep, their quality of REM sleep, and their ability to stay asleep. The sleep troubles children with Down syndrome face often affect other aspects of their development down the road. In fact, research conducted by Jaime Edgin, PhD suggests that lack of sleep in early childhood and infancy can negatively impact learning, memory, and language development. Impediments in language development are a particularly common result of sleep inefficiency in children with Ds.

There can be multiple causes of sleep deprivation in children with Down syndrome, and it is best to consult with your doctor first to discuss what is going on with your child. Two common causes of sleep disturbances in children with Down syndrome are physical, breathing-related sleep problems and behavioral sleep problems. We will be discussing these two types of causes in this article. The first step in diagnosing and treating your child’s sleep issue is through figuring out if the problem is physical or behavioral.

The most common physical, breathing-related sleep problem is obstructive sleep apnea, where according to a study by NIH,  31% of infants with Down syndrome have obstructive sleep apnea. A first step is to rule out sleep apnea, since it happens so frequently. According to NIH, obstructive sleep apnea is commonly responsible for restless sleep, snoring, and gasping as compared with typically developing children. This increased likelihood is caused by physical abnormalities associated with Down syndrome, such as narrower upper airways, larger tongues, and tonsils, looser muscle tone, and a propensity for being overweight.

My brother suffered from sleep apnea and the first step in treating the issue was taking him to a sleep study. Mass General Hospital recommends have a sleep study conducted by the age of four for children with Ds. After his sleep study, he was put on a CPAP machine to help keep his airways open.

A second common underlying cause of sleep deprivation are behavioral issues prevalent in children with Down syndrome. Most behavioral issues fall under the umbrella of sleep hygiene principles, where using adhering to these principles helps your child fall asleep and stay asleep. Create a plan that involves the following principles and keep following it:

• Establish a clear and regular routine. Establish a routine set of activities surrounding bed time. Children with Down syndrome respond most effectively to visual prompts, like photo cards or a homemade picture book of each stage of the routine. Consistency is everything – perform the same activities each night within the last hour prior to bedtime.
• Reward and reinforce good behavior. Note that while social rewards like praise and cuddling often work with children who have Down syndrome, for some kids they do not. In this case, you must be creative and find other incentives, like a small token gift. Reward systems that give stars or other positive tokens makes bedtime associated with less anxiety and positive emotions.
• Create a relaxing bedtime setting, as it is essential for reducing the anxiety caused by the physical and behavioral challenges associated with Down syndrome. Make his or her bedroom only for sleep, where it is kept cool, dark, and free of distractions. Consider white noise machines. Also, as part of a sleep-friendly environment, consider your child’s bedding and mattress as well by laying on your child’s bed and testing it out. Is it comfortable? While you don’t have control over your child’s behavior, you do have control over their environment so do your best to make it conducive to sleep.

Parents in turn also experience sleep deprivation, where it is paramount to ensure quality of life for both parent and child through addressing sleeping problems. This sleep deprivation of parents leads to a harder time implementing consistent and appropriate behavior management during the day, which in turn can lead to increased behavioral problems at night when trying to get your child to bed. There are several teaching and learning challenges of having a child with Down syndrome, where the resilience and strength of you as parents cannot be underscored enough. Use these sleep hygiene principles for the benefit of your entire family.

Lisa Smalls is a freelance writer from North Carolina. While she isn’t a medical professional, she grew up sharing a room with her brother who had Ds. In her free time, she is passionate about writing on the sleep issues Ds kids face and how families can best cope with these challenges.

Written by Victoria Vila

March 21, 2019

World Down Syndrome Day

Dear 4^th Grade Scholars:

Today, Thursday March 21, is the day when people around the world advocate for the acceptance and inclusion of people with Down syndrome – like Nino — in every part of our communities and celebrate all of the things they are able to achieve. In the past, people with intellectual disabilities like Down syndrome didn’t have as many opportunities as they do today.

So, Nino is very proud to have a day to celebrate and to think about the wonderful friendships he has made with all of you. I want to give a special mention to his twin sister, Veronica. Nino has always looked up to her and I do believe she has provided the best example for how to treat someone with a disability: like a brother that you love.

Remember when I used the word “advocate” when I told you about today? What does it mean to be an advocate? Well, you are studying Latin roots and I can tell you that the word “advocate” comes from the Latin words “ad,” which means “to” or “toward,” and “voc” which means “call” or “voice.” So an advocate calls toward something as a show of support. In other words, an advocate adds his or her voice in support of another.

Did you know that all of you are advocates for Nino and for everyone with Down syndrome? Over the past 5 years that Nino has been at our school, I have heard so many wonderful stories about how you guys have helped Nino succeed and have been good friends to him. And I want to share some of them with you today. This day wouldn’t be possible with you!

Here are 21 ways that you have “added your voice” to champion someone with Down syndrome. (The last one is for Nino himself.)

1. When you hugged Nino or comforted him when he was upset.
2. When you invited him to play on the playground.
3. When you invited him to your birthday party.
4. When you helped him pack his backpack.
5. When you took notes for him in class.
6. When you helped him write his spelling words.
7. When you worked with him on reading or math as a peer buddy.
8. When you picked him to sit next to at lunch.
9. When you made him an awesome card when he was in the hospital last year.
10. When you drew him a picture of an elephant because you knew it was his favorite animal.
11. When you gave him a toy that was yours and you really liked it but you knew it would make him happy to have it.
12. When you made a rewards chart for him and helped him keep track of his good behavior.
13. When you forgave him when he wasn’t making good behavior choices.
14. When you helped him study for a test.
15. When you shared your dessert with him at lunch.
16. When you wanted to sit next to him on the bus for a field trip.
17. When you played games with him at carpool.
18. When you helped him say what he wanted to say to another classmate if he was having trouble finding words.
19. When you said he was awesome at soccer and helped him get that way.
20. When you called him your friend.
21. Nino: we are proud of you too, every time you speak up for yourself instead of getting mad or frustrated. When you use your voice and your words, you are being a SELF ADVOCATE! Keep going!

By Marilyn Wallace

Most, if not all, children with Down syndrome are born with a high narrow palate in their mouths.  This is due to inadequate development of the facial bones. I know it is more technical than that, but admittedly have only a basic understanding of this.  When my son was young, I knew it was important to seek orthodontic treatment to get his palate expanded to aid in his speech.

Now I know so much more and as they say, “Hindsight is 20/20”.

David is currently 16 years old.  We started seeing an orthodontist when he was 6, just to be followed.  At 9, an expander was put in. He maxed it out, so then he went to top braces to get to full expansion.  Once all his adult teeth were in, top and bottom braces were put on.   He had them for two years.  December will mark 2 years since his braces have been off.  Now he has 2 permanent retainers on the back of the top and bottom 4 teeth, with a removable one to wear at night.  These will be used for the foreseeable future.

We thought we did everything correctly until we saw a new holistic dentist and I learned that David is starting to lose some expansion.  The cause – tongue placement.  David is a mouth breather.  Mouth breathers’ tongues rest on the bottom of their jaws. If you are on your back with your mouth open, this can result in the tongue going backwards causing an obstruction and possibly contributing to sleep apnea, a chronic issue for our kids.  Teeth grinding, another issue in people with Down syndrome, may be caused by kids moving their jaw around trying to breathe better.   While orthodontics helped, it didn’t address the underlying issue of mouth breathing and didn’t get him the facial development which is what we really need.

It is healthiest to breathe through your nose.  The mechanics in the nose help filter and heat/cool the air for us and prevent germs from progressing.  When you nose breathe and your mouth is closed, tongue placement is on the roof of the mouth.  The force of the tongue aids in the growth of the upper jaw/facial bones.  The pituitary gland is also stimulated through the expansion of the saddle-shaped depression in the sphenoid cranial bone that houses the pituitary.  This has implications for our children as well. But I won’t go into them here.  While your child may be a nose breather due to low muscle tone in the tongue, it may not provide enough force for full facial development.

In talking with the two different dentists in the office, braces are not all they appear to be.  I had made the connection that there are causes to the things that ail us and one looks for solutions not band aids.  Well, I have never applied that to teeth.  Oral health takes a hit due to braces.  The dentist stated the orthodontist did what was asked of him, straightening David’s teeth and for us it was widening the palate. But what caused those things to begin with?  For David, tongue placement/mouth breathing is the issue, as well as the lack of facial bone growth.

These are the issues with braces, from my notes of the conversation I had with the dentist, as best as I can convey.   One can be allergic to the metal which causes inflammation of the gums.  The swelling prevents adequate cleaning and, over time, gum recession.  Teeth are anchored in the jaw bone.  When you start moving them with braces, you destroy the bone and new bone must be laid.  With braces only being on a couple years, not enough new bone grows which causes the teeth to shift.  Therefore, one needs to wear retainers for the rest of your life or the teeth won’t stay where they were moved to.  The root system is also compromised due to the movement.  David has some roots that are compromised.  Without adequate new bone growth, as you chew, it puts pressure on the teeth and, due to their angle, can cause teeth recession (my issue).  Brackets are an irritant and cause enamel damage. Whether you visually see it or not, it’s there. There is also an issue in the jaw when teeth are being pulled to make room for the moving and straightening.  In addition, palatal expansion only spreads the jaw from side to side, whereas other methodologies help to grow the bones all around the face.

In the end, David has straight teeth, at least for now, but the overall health of his teeth is compromised.  The cause of his issues is not rectified.  He is still a mouth breather and he doesn’t have full facial maturity.  Fortunately, his sleep apnea is not a current issue due to what expansion he’s had and his tonsils and adenoids being removed in January 2018.

If I had a “do over”, I would research the different options and start expansion earlier than age 9. I would find or educate a local provider who would support expansion at a much earlier age in a method that would allow for facial bone growth and expansion.   Ideally, the expansion would start no later than age 5-6, but my understanding is there can be success at older ages, too.   I also would have addressed his mouth breathing along the way.  It is something done in conjunction with expansion as it opens the nasal passages making it possible to breathe through the nose.  There are some devices, such as Myobrace, that claim to aid in tongue placement, as well.  If I would have known about this device sooner, we would have used it instead of braces.

Where does that leave us now?  Our holistic dentist does deal with Myobrace.  Even at 16, there is a possibility of additional growth of David’s facial bones.  The down side is the impact it would have on his $5,000, multiple-year orthodontic treatment.  I plan on starting nose breathing exercises soon since he can breathe through his nose with the expansion that has already occurred.

The specialty is orthotropics: dealing with facial bones.

To learn more, visit Orthotropics.com and look it up on YouTube.

Provider possibilities:

Holistic Dental in Center, Cornelius, NC

Dr. Crespo works with the kids and their practice works with myobrace (myobrace.com).

Other possibilities that I know nothing about, but saw the word “orthotropics” on their website:

Queen’s Road Dentistry

Ryder Orthodontics

Another method, among others, is Alforthodontics.com.

When looking for a provider it was suggested you call Myobrace or Alforthodontics (ALF) as not everyone could be in their online listing.   It also pays to call around town because often, if a membership or fee is required to be listed on a manufacturer’s website, providers may not choose to list.

Mouth breathing can be addressed with some methods such as Myobrace and the ALF. Our dentist suggested Buteyko Breathing Method by Patrick McKeown.  He has a book, but you can also look on YouTube.

 My husband and I both tape our mouths. We fold over a side to be able to get it off quickly, if needed, and only use about a 1.5” piece – just enough to keep the mouth closed.

David wasn’t happy about the tape as he claims he can’t talk to himself. I may get a strap for him instead.

By Laura Hayner

People are always praising parents for their babies being good sleepers, great eaters, getting their first tooth, or hitting their developmental milestones, but what parents and children of Down Syndrome should be praised for is how brave, strong, and resilient they are.

In the first year of our children’s lives, we see more doctors than some children without Down Syndrome will ever see: cardiologists, geneticists, physical therapists, occupational therapists, pediatricians, speech therapists, ENTs, eye doctors, the list is endless.  And that list doesn’t even account for those of us who end up having to do long term stints at children’s hospitals due to complications with RSV or other viruses common in children’s younger years. Starting the first few days of their lives, babies with Down Syndrome will have more tests done to them than most babies ever will.

If you are like me, all of these visits stress you out for days (sometimes weeks) beforehand. Compounding the stress of packing up an infant or young toddler in a car regardless of whether it’s nap or snack time (because most often the doctors dictate the time you have to go to your appointment with little regard to any schedule you may have in place) is the additional stress of watching your child be hooked up, poked and prodded, and having no clue what information you’re going to receive at the end of the visit. Is your child going to need to have open-heart surgery at just three months old? Will they have thyroid problems at just a year old? Can they see? Can they hear? All health issues parents with children who do not have Down Syndrome will likely never think about.

And yet, every time, no matter the outcome, no matter what our children are asked to endure, somehow they manage to come away with a positive attitude. They aren’t ever praised for being a patient toddler laying still for an echocardiogram.  They aren’t ever praised for being so brave while getting their finger pricked and blood drawn to make sure they don’t have leukemia or a malfunctioning thyroid. They aren’t ever praised for being so strong while having pneumonia hospitalize them for two weeks. They aren’t told how resilient they are that despite all of these extra hoops to jump through they still sleep well, eat well, get their first tooth, and learn to sit and crawl and walk.

And I don’t think it’s too far of a leap to say our children are this way because they have some amazing parents. When it is easy to forget because we keep hearing worst case scenarios, or because life gets so stressful with a calendar full of doctors, or because the questions about what milestones your child has or hasn’t hit yet are so loud, take a second and just remember, not only are our babies strong and brave and resilient, but so are we. It’s just that no one ever remembers to say that part.

By Larina Pierce

It started just over ten years ago with the birth of our first daughter, Camille, who has Down syndrome. When a child with special needs is born, a parent-advocate is also born. I’m sure you can remember that day, if that day is part of your story. I’m also sure nobody told you about your new role as your child’s advocate. Sooner or later, though, it becomes obvious that this isn’t just ordinary parenting. (Darn it!) This child needs more. This child needs different. This child is a bit complex, maybe even overwhelming at times. This child is beautiful and intriguing, too, and a parent’s heart is ready for this new role, at least. (Whew! Love. The central component of advocacy is immediately checked off your list.)

So… what IS advocacy? Merriam-Webster defines it as “the act or process of supporting a cause or proposal”. That begs the question: What is our cause, friends? We actually have many causes, including making sure that our children have their medical, emotional, and educational needs met throughout their lives. That’s also true if you are parenting a typical child; you will have to be his or her advocate, as well. But advocating on behalf of a child with special needs is a whole different ball game, I dare say, and it’s worth thinking about how you, as a parent, actually become an advocate for your child. It doesn’t happen overnight but, thankfully, there is a bit of a method to the madness.

As I mentioned above, loving your child is step one and you get to check that one off the list right away. Step two is understanding your child. From personal experience, this may actually be the start of a parent’s discomfort; I spent many years and countless hours trying to understand who Camille was and why she did what she did. I found it difficult to understand what was driving her behaviors; I found it impossible to truly reason with her until she was almost eight years old; I felt like maybe I was destined to raise her without ever actually getting her. But I kept at it. I read books on behavior, I went to conferences, I listened to webinars, I bounced ideas off my friends (love you, Facebook Messenger!), I called my parents every few hours, I prayed, I spent a lot of Friday nights mulling things over with my husband (good times right?), and I observed my child. I observed Camille ALL THE TIME. I thought about her. I talked to her. I listened to her. Exhausting? Beyond words. But I understand her now. And because I understand her, I can advocate for her.

Step three? Refining your communication skills, if need be. When you go to write that email, or speak up during that IEP meeting, or call that doctor, you need to have your brain and your mouth under wraps. Invite some deep breaths, write down your questions and your main points, and speak respectfully. Have I done that every single time? (Oh, how I want to lie to you!) No, I have not. But I’ve done it 95% of the time, including under duress and in the throes of some highly charged meetings. You are only human; you are going to get angry; you are going to get frustrated and tired. But you must get and keep yourself under control, which brings me to what advocacy is NOT: it’s not unhinged. It’s not lashing out. It’s not speaking out of turn. It’s not aggressive. At its best, advocacy is eloquent, and elegant. It’s well informed and purposeful. It’s calm and effective.

Step four? Knowing the world you are navigating. For most of us, that involves understanding the particular medical challenges that our child faces and confronting the vast realm of special education. (I’m going to stick to the latter here, as that’s what I’m trained to do.) Special education operates via laws, regulations, policies, and guidelines, and that list right there would be enough to scare any well-meaning parent away. But you can’t be afraid; your child needs you to step up. The way you approach special education depends on where you are in the journey; if you have a very young child, you might start with the Wrightslaw book, All About IEPs. You might attend a friend’s IEP meeting as a note taker, just to see what IEP meetings are all about. You might head out to a DSAGC dinner and make some new friends who are walking the same path.

If your child is transitioning to Kindergarten, you will probably start to tour schools and meet with teachers and administrators. You might want to attend local or regional conferences. You should keep reading relevant books and watching webinars that seem on point. You will likely encounter at least a few (million) challenges with the school system as your child advances through elementary school, where the environment and demands change rapidly. Perhaps you will start to see behavior issues arise, or sensory issues, or emotional struggles. Or all of those, which is not uncommon! Just try your best to stay one step ahead of — and informed about — the most pressing concerns. Prioritize and tackle one or two at a time. That’s how you survive.

Step five? Honestly, it’s just repeating step four over and over again. Keep learning, however you can. Does it take a lot of time? OH, MY. Indeed. Is your child worth it? Of course!

Step six? Whether you just need a place to start, or you are in a true pickle, there are professional advocates who can help you move forward. I will be one of them, beginning in 2019. I’m refining my plan and how I can best serve our community, so hang with me!

I worry about special needs families and how they are coping with the enormity of what’s on their plates. I also think about teachers and other professionals who are so often called to do more than what is fair, given the limited resources they have. I dream about IEP meetings where everyone is working toward the same goal: figuring out what is best for the child, period.

Advocacy is everything, really, so jump in without fear (or with fear + a good friend or twenty on standby) and make it happen for your person! You know your child, you have a village behind you. You got this.

Larina Pierce, B.A., M.A., J.D., has an extensive background in communications, law, and educational consulting. She truly enjoys working with families who are navigating the world of special education. She recently completed a six-week course with Catherine Whitcher on IEP Coaching.

Dear Me:

I know you just got that awful phone call.  The one that told you the news you didn’t want to hear.  Your sweet, unborn baby, the baby you’ve dreamed of your whole life, has Down syndrome.  You don’t even know if it’s a boy or a girl, but you know there’s an extra chromosome that just changed everything.

It’s not fair. That’s what you’re thinking.  What did you ever do to deserve this?  That’s what you’re asking God right now. You’re devastated. You’re scared. You’re ANGRY. You’re worried you CAN’T do this. You’re feverishly googling what this means and you can’t say the words “My baby has Down syndrome” without bursting into tears.

You feel like you’ll be consumed by it all.  You’re drowning and no one can save you. Your life is never going to be the same and you’re crying all the time. You’ll cry in a job interview next week.  You’ll cry through your Niece’s dance recital next month. You’ll cry for all the hopes and dreams you think just died.  You’ll cry when you wake up in the morning. You’ll cry yourself to sleep at night. You’ll cry at a million random times in the hours in between.

For you, sweet Mama, I have only two words…just wait. Please, please just wait.

Just wait until you meet her. She’s going to come into the world, with her little broken heart, and steal yours forever.  She’ll hear your voice for the first time, reach her tiny hand for you, and wrap your soul with hers.

You will still cry. A lot.  You’ll cry when she says “mama” for the first time and your heart nearly explodes.  You’ll cry when she starts walking on her own because she worked SO HARD and never gave up.  You’ll cry when a teacher or a friend says “Thank you SO MUCH for sharing her with us!”  Sometimes, you’ll just look at her and cry because your love for her is overwhelming.

Just wait, mama.  Just wait until you realize that all the hopes and dreams you once had for your child still live in that sassy, feisty, fierce little girl.  On the hardest of days, you’ll see that you CAN do it.  You ARE doing it and you’ll know that you’ll keep doing it until you take your last breath. It’s not always going to be easy, but it will ALWAYS be worth it for her.  Always.

You’ll still ask “What did I do to deserve this?”  What did you do to be gifted the most beautiful little girl who lights up the universe with her smile?  What did you do to get this strong, determined, smart, courageous little soul to choose you as her mother?  What did you do to have this much love, joy, and laughter in your life?  Whatever you did, you’d do it a million, trillion times over again.

So take a deep breath, grab that milkshake you’re craving, and know that it’s all going to be just fine.  Enjoy these next few months with her all to yourself. You’ll have to share her with the world soon.  She’ll have her own little fan club who can’t get enough. She’ll be her own kind of wonderful and it really will not be fair just how cool she is!  Just you wait and see!

Love, Mama Fierce (aka YOU!)

Bio: Shana is a full time working mama, trying to have it all while not losing her marbles. Her hobbies include running late, “ironing” her clothes in the dryer, and reheating coffee. She has a 4-year-old daughter named Zoey, who loves Elmo, music, carbs…and also rocks an extra chromosome.  

Originally posted in 2017

Finding the right professional team is critical to the success of your Special Needs Plan.  “Success” of a Special Needs Plan should be defined as having clarity regarding the path you need to take in order to provide a loving, supportive, and safe caregiving environment for your child during their entire lifetime.

This means you will need guidance on:

• How to navigate the government benefit landscape to maximize your child’s benefits, as well as understand how your own (as parents) choices regarding Social Security Retirement benefits can change your child’s benefits

• How to design a Special Needs Trust, Who should be the trustee, Should you have a Trust Protector, How many Successor Trustees should I have, Should I use a company as the Trustee

• How do taxes work inside a Special Needs Trust? The understanding of tax strategy is critical in funding the special needs trust so that the trust assets are not taxed at the highest tax rates versus being taxed at much lower tax rates.  Tax strategy is also important in determining the accounts parents are saving in for their own future that will eventually be transferred into the special needs trust.  Again, parents would be horrified to realize their hard work turned into more income for the government instead of providing for the support needs of their child

• Determining the amount of funding your child will need over the lifetime, and calculating a specific number. This helps families understand the percentage of assets that need to be transferred to the special needs trust versus the percentage of assets that are left to other children (or grandchildren)

• How to educate extended family members on adjustments they need to make so they do not incorrectly provide resources to your child with Down Syndrome and inadvertently cause them to lose life-supporting government benefits

• How to communicate with those people that will be the next caregiver (Guardian) for your child in regards to letting them know how to care for your child on a day to day basis? For instance, doctor information, prescriptions, pharmacy that fills prescriptions, behavioral and sensory issues, your child’s favorite activities and things, daily routine, your hopes and dreams for them, and more.

It takes a great deal of study, dedication and time to become a Specialist in all these areas; however, it is imperative to your child’s future that you find professionals who can help you satisfy this definition of “success” when it comes to having a Special Needs Plan.  As families, your search for an expert in Special Needs Planning is analogous to your search for a specialist in the medical field.  If a Neurologist is necessary, not just any Neurologist will do, but a Neurologist with the specific education, temperament, continual training, daily focus, and passion is necessary.  So many families search for quite some time before they find the right medical team.  It is this same persistence and focus needed to find the right Special Needs Planning professionals.  Unfortunately, these professionals are few and far between and many times will not be local to your family, but the search is needed to secure your child’s future support.

We have assembled a list of questions for families to ask professional so that they can uncover if the professionals they are working with (attorneys, financial advisors, accountants, trust officers, etc) are truly specialists as this is vital in securing the proper and accurate Special Needs Plan.

1. I know this is a highly specialized area that requires knowledge of government benefits, the legal system, tax code, distribution planning, and transfer of assets from one generation to the next, do you have expertise in these areas? How would I know that?
2. What professional training have you had in the area of special needs planning? What courses have you taken? Can you show me your most recent course manual? Can you share with me the books you have read on special needs planning?
3. Do you attend continuing education conferences on the topic of special needs planning? If so, how often? If not, how do you stay on top of the changes in the legal system, tax code, government benefits and their impact for special needs families?
4. When you’re considering the distribution phase of our money and the transfer phase of our money, how do you ensure our money gets to our child after we are dead?  What do you do to limit the erosion of these assets to taxation?
5. What is the maximum asset limit in order to qualify for Medicaid?
6. What is the difference between SSI and SSDI?
7. Can you explain the advantages, as well as the drawbacks, to an ABLE Account?
8. Can you clearly define the planning process you use to help me secure the future of my loved one with special needs?

   (The professional should be able to describe to you very easily the steps they use in serving families.)

9. Can you provide me 3 families that you have helped in the area of special needs planning, so that I may call them to discuss their experience?
10. Can you provide me the names of 2-3 professionals you work with in the area of special needs planning?
11. Who do you turn to when you have questions in the special needs area?
12. Are you involved in the special needs community? If so, how? (This question will show you if the professional has his/her finger on the pulse of the special needs community by their involvement with organizations, societies or conferences. It will also show empathy and support for the community as a whole.)

When interviewing them, stay focused on their mannerisms. If the professional you are interviewing is able to answer these 12 questions with authority and you receive positive feedback from the families and professionals you contact, then you have found yourself a highly qualified special needs planner. You should move quickly to hire them.  If they are not able to answer these elementary Special Needs Planning questions, keep searching!

With their help, you will begin a journey that will lead to security for you, your loved one, and your entire family. The planning process you go through will provide you answers to many questions, including, “What happens to my child when I am no longer able to care for them or when I die?”  Having the answer to this question should release a burden from your shoulders, and should provide peace of mind.

Contributed by Ryan F. Platt, Founder of A Special Needs Plan, Inc.

A Special Needs Plan is driven by what they call Unleash L.I.F.E.™- L.I.F.E. meaning Lasting Independence For Everyone™. This is accomplished with education, action, and support in the creation, implementation, and continued monitoring of a specifically designed lifelong and integrated plan for your family: parents, caregivers, your loved one with special needs and their siblings. www.aspecialneedsplan.com 704-326-7912

https://youtu.be/8YxOg2ZoY3s

Make a New Friend Today; especially if they have Down Syndrome!

Employing people with Down syndrome (Ds) is more than just about doing good; it’s about doing what’s good for your business.

Here’s why: 

They’re Capable & Qualified
People with Ds are just like anyone else. They have strengths, weaknesses, talents and skills. They may have qualities and skills that you value in an employee.

Dependability
Commonly, people with Ds are grateful to have a job. They thrive on having a purpose and a daily routine; making them reliable, punctual and dedicated employees.

They’re Motivated
Job seekers with Ds want to work and are eager for the opportunity to utilize their skills, contribute and succeed. 

Morale & Teamwork
More often than not, worker with Ds are happy to be working and exhibit an enthusiastic attitude that boosts camaraderie and teamwork among all employees. 

Productivity & Performance
Employers report that workers with Ds perform no different than their non-disabled colleagues. Most people with disabilities are diligent, detail-oriented and committed to their responsibilities.

Employee Retention
Employees with Ds have a high degree of loyalty to their employers. They often remain with a company for years, reducing employee turnover.

Untapped Labor Pool
People with Ds are part of a talent pool of qualified and skilled workers often overlooked by employers.

Tax Incentives
Your business may qualify for tax credits when you hire job seekers who face barriers to employment. 

Inclusive Culture
A diversified workforce promotes an inclusive culture where differences, perspectives and creativity are valued—a culture that appeals to a talent pool that organizations want to attract. 

Everyone Benefits
When organizations focus on how people’s abilities and skills can contribute to the bottom line, it’s a win-win situation for employers and all their employees.

By Jennifer Powell Naylor

INCLUSION. Is it easy? No. Is it possible? Yes. We advocate for inclusion of ALL individuals with Down syndrome every day. With a caring heart and an open mind, YOU make this happen. We are witnesses of INCLUSION in Brayden’s life and it’s a BEAUTIFUL thing.

Our Halloween night was AMAZING because we saw INCLUSION and ACCEPTANCE working in Brayden’s life. Brayden started Kindergarten this year in his neighborhood school and we saw why that INCLUSION is so important last night as we walked through our neighborhood. Children were calling Brayden’s name to say hi or stopping to talk to him. These are children he sees at school. He cannot come home and tell us about his new friends, but we get to see it all play out in his daily life.

This is why we advocate. This is why we educate. We will continue to do so. Down Syndrome Awareness is not just something we do because it’s on the calendar for October. It’s AWARENESS we bring because it is important to our son’s every day life. We are encouraged by the love of our friends and neighbors, and although there is still lots of work to do and people’s hearts to open, we are celebrating the INCLUSION we witness today. Hope you all had a safe and wonderful Halloween evening with your loved ones.

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

By Vicki Vila

As parents, sometimes we want a peek into the future.

What kind of job will our children have? Who will they pick as their partner? Will they ever stop leaving piles of clothes in a trail on the floor?

We use our own life experiences to guide our children as best we can. But if you have a son with Down syndrome like I do yet never met anyone with that genetic makeup while growing up, the future can seem more mysterious.

People with Down syndrome are living longer, healthier lives than ever before, with more opportunities to be included in the wider community and pursue higher education. But there also exists a long and sad history  during which parents were counseled to put their babies in institutions, and most did, so generations of people missed out on getting to know them.

At the same time, new prenatal blood tests have made it easier to predict early in a pregnancy if a fetus may have Down syndrome, though an invasive test must still confirm the diagnosis. Some worry these tests will push the abortion rates higher for Down syndrome pregnancies, though comprehensive data on Down syndrome and abortion does not yet include those tests.

With these facts in mind, I was quite happy for the chance to see people with Down syndrome featured on their own reality show – the A&E series “Born This Way.”Left to right: Elena, John, Cristina, Steven & Sean at the community center Leaps n Boundz with a support worker. (Photo Credit: Adam Taylor, A&E Network)

The series began at the end of 2015 and became so popular that it just finished its fourth season in the fall of 2018, with wedding of Cristina and Angel. I wrote this article for my own blog after watching the first season.

I watched that first season with a friend who also has a young son with Down syndrome and we enjoyed seeing the seven young adults interact with each other and figure out their lives. Though I think most reality shows are exploitive and not worth watching, this was a very positive and likable show. It’s a project from Bunim/Murray Productions, which created the reality show format with the MTV franchise “The Real World.” This latest venture, though, is free of backstabbing and alcohol-fueled revelations. The cast members really support each other and when an issue arises, they argue but work it out.

They are fun to watch and represent different archetypes. Megan, 22, is very ambitious and thinks highly of herself. She is a public speaker and with her own clothing business called Megology. “Don’t limit this diva because I’m right here,” she says. Cristina, 25, is socially mature and has a longtime boyfriend she marries in Season Four. Sean, 21, is pegged as a ladies’ man on an eternal quest for a girlfriend. Rachel, 32, is a likeable everywoman with a job who loves R-rated movies and American Idol. John, 28, an aspiring rap artist, is the comedian of the group. When he cracked an egg on his forehead during cooking class, I saw glimmers of my son. (The ages of the cast are from Season One).

Elena, 28, is highly emotional and doesn’t like it when people mention Down syndrome. “I don’t know why God gave me that,” she says. I worried over whether producers were filming in such a way to highlight her anxiety. Elena was born in Japan and her mother said it brought great shame to the family and took her 20 years to accept her daughter’s diagnosis, so it is possible Elena has internalized that. Steven, 24, works at a baseball stadium and dispenses sage advice. When one cast member said Elena needed to be nicer and control her emotional outbursts, Steven said, “You want her to be perfect. I think the best thing for Elena is to be who she is, rather than something that she’s not.”

“Born This Way” has been hailed as groundbreaking in some corners, and criticized in others for portraying an overly rosy look at life for adults with Down syndrome.

David Perry, a critic of how disability is portrayed in the media and a writer I respect, says the show is “basically fine” but doesn’t go far enough to promote inclusion. Personally, I don’t think it’s going to change the world – that’s a long-term project – but it is a leap in the right direction, because the world by and large doesn’t have high expectations for those with Down syndrome and I think most people don’t realize how interesting and varied they can be.

This is not the first time Down syndrome has been on TV. But it’s the first time I can recall a full cast of people with intellectual disabilities on an American show. In 2009, an online show in the U.K. called “The Specials” won critical acclaim for its portrayal of a group of young adults with intellectual disabilities. In the United States, my generation grew up with “Life Goes On,” about a boy with Down syndrome and his family, starring Chris Burke. Today’s television landscape has a variety of talented adult actors with Down syndrome, including Lauren Potter of “Glee,” Jamie Brewer of “American Horror Story” and Luke Zimmerman from “The Secret Life of the American Teenager.”

One common criticism I’ve read about “Born This Way” is that it focuses too much on interviews with the parents, and this bothered me at first too.Beth Haller, a disability scholar who is a journalism professor and the director of the Communication Management master’s program at Towson University in Maryland, said she thinks the show is “an important and helpful addition to representations of people with disabilities on TV.” But she thinks the parents disrupt the narrative.

In “The Specials,” of which she is a big fan and wrote the show’s Wikipedia entry at its request, she said that parents, family members or personal attendants have very little screen time. “It felt more inclusive because one of the adults from the group home narrated each episode,” she said, and there was less of the sitting before the camera to reflect on things that happened.

“Nothing against the parents,” she said, “they all seem very nice, and they obviously care about their adult children.” But she would like to see the show more focused on the adults and their activities. “To me, when the parents have so much screen time, it shifts the focus of the show to be for parents of disabled people, rather than a more general audience.” With that said, she added, “I still appreciate the show for focusing on the lives of people with intellectual disabilities and will definitely keep watching.”

My friend and I definitely enjoyed having this peek at some real people with Down syndrome on “Born This Way,” and I guess I’ve been less bothered by the parent interviews as time has passed. In the first episode, cast members gather with their families for dinner on a pretty outdoor patio. People bantered comfortably and passed around delicious-looking platters.

My friend commented: “It’s just encouraging to see them walking around, talking with friends, having a good time at dinner, not throwing their food.” Or licking each other’s elbows, I interjected, referencing something my 7-year-old son thinks is hilarious to do to his sisters.

On a more serious note, watching adults with Down syndrome laugh and talk with their friends can seem like a big deal to some.

Parents of young kids have told me the show gives them hope they’ll be able to have a meaningful conversation with their child someday. You see, people with Trisomy 21 – the medical name for Down syndrome – are almost always delayed when it comes to communicating. As with many things, it’s a spectrum, with some children becoming quite chatty while others speak in short phrases or use a communication device or sign language, and these skills are constantly evolving.

Stacey Calcano, of New York City, has a preschooler with Down syndrome and said the cast should not be held up as the best way to be an adult with Down syndrome. She brought up a point that I’ve heard other parents echo and I think is valid. “It’s really bothering me that our community is presenting itself in a way that we need “proof” of what our kids “may” be able to do for peace of mind,” she said. “If our children grow up without the same abilities as the adults on the show, does that make them less valuable as human beings? No!”

I ask myself if I am falling into this trap, and maybe I am. I DO want my son to be well spoken, but I also think he’s already there at age 7. I enjoy him very much and think he’s hilarious, but the truth is people who don’t know him may have trouble understanding him. I’m okay with that; we’re working on it.

There is a broader truth at play, and I think it’s double-sided. On one side, the show is an indicator to a wider audience of how much has changed since routine institutionalization. On the other hand, I think people with Down syndrome will always struggle with some things, so it isn’t that the cast members have better skills than others, just different ones.

Megan still needs to learn to do laundry and grocery shopping. John’s mother says she doesn’t think he could ever live independently and is greatly relieved when her daughters reassure her he can live with one of them if need be. Some of the cast did not know how to ride a two-wheeled bike until they went to a camp to learn during filming. (Bike riding is also harder for people with Down syndrome because of low muscle tone and balance issues. I give credit to the show for having Steven explain this when talking about the camp.) Rachel, one of my favorite characters, does her own shopping and laundry and has a job in an office mailroom, but because of sensory issues has a fear of loud places and can’t handle crowds.

So what do adults with Down syndrome themselves think of the show?

I decided to ask some. I spoke via phone to Alex Bender, who attended the TAP program at the University of Cincinnati for people with intellectual disabilities, where she studied photography. She heard about the show from her Mom. She said Megan is her favorite cast member. “She’s awesome,” Ms. Bender said. Her mother, Gary Hughes Bender, who wrote a book about raising Alex, told me that Alex did not seem to like the parts of the show where cast members were all together at a community center because her life is more inclusive.

When I asked the younger Ms. Bender if there was anything she didn’t like about the show, she quickly replied: “I told my Mom I loved it. I didn’t like her keeping me up so late to watch it, but I loved the show.” She did see a few parallels between her life and Megan’s. Like Megan, Ms. Bender is close with her Mom, who is also a single mother. Ms. Bender said she loved her school and saw her future in Cincinnati. “But then there is my Mom,” she said jovially, “she wants me in her life.” Her mom lives in San Francisco.

Rion Holcombe graduated from the ClemsonLife program for people with intellectual disabilities. He became an Internet sensation in 2014 when a video of him opening his acceptance letter the competitive program went viral. I did not speak with him directly, but his Mom told me he watched one episode of “Born This Way” and found it very entertaining. She said he gave her permission to pass along his thoughts. “He identified with the guys,” said Susan Holcombe, “guys he would definitely be friends with, but his favorite is John. Quite a character that John!”

She said they discussed some of the things in the show, like what would happen when she and his dad get too old to care for him. “One thing I know is that he cannot live on his own,” she said, “but he adapted quickly and happily to dorm life with his three roommates. He walks to class (a mile) and crosses traffic to walk to work three days a week, and takes a bus to the grocery store to shop. So he agreed that living in a smaller group home would be a possibility.” She said her son is really level headed with strong values. Whereas she finds the show insightful, to him it’s just entertaining. “He would rather be watching the Teen Disney shows,” she said.

I also spoke with the family of Jacob Gehringer, a self-advocate from the Omaha area who carries around his own bio sheet to hand to community leaders. His mother, Denise Gehringer, told me that Jacob was fully included in both “place and curriculum” in high school and was is in his second year of vocational training in his school district when I first wrote this piece in January 2016.

Ms. Gehringer told me that her son has said “Thank you!” out loud many times when the cast makes comments on “Born This Way.” He especially gave his “Thank you!” she said, when two of the guys – I think it was Steven and Sean — were having drinks at the bar and talking about dating. Jacob was in agreement when Sean got advice from his friend to stop pursuing a cast member that already had a boyfriend. For this article, Ms. Gehringer asked her son directly about the show and forwarded me the questions and answers.

Q: Would you like to hang out with the gang on “Born This Way?”

A: I don’t know. I don’t know if we like the same things.

Q: What did you think when the gal got upset when she heard the words Down syndrome?

A: It hurts her feelings. I would not say it to her.

Follow Up Q: Does it hurt your feelings when you hear Down syndrome?

A: NO! Why would it hurt my feelings? I’m not the same feelings as her. (Under his breath) Stupid question.

Q: What do you think when the guys were talking about dating?

A: (Very reluctant to talk about this with his mom). I don’t know. That guy should respect boundaries.

Q: I thought I heard you commenting about the one guy getting to live in his own place. What did you think about that?

A: I want a house with a yard for my dog.

Q: Do you want to watch more of this show?

A: No. “Agent Carter” is coming back on.

“So there you have it,” said Ms. Gehringer. “Apparently he was much more unimpressed than I thought.”

I love the variety of responses I got, and I like that some other families whose young adults have Down syndrome I reached out to said their sons or daughters were too busy to watch the show. Others said their children weren’t aware of it.

One thing that struck me while reading parents’ opinions about the show on social media is those who said the cast was not representative of the average adult with Down syndrome because they are fairly independent with strong verbal skills.

Is there an “average” adult with Down syndrome though? I decided to ask someone from the National Down Syndrome Congress because they meet people from all over the country. Sue Joe, then the communication director, said in an email: “There continues to be such a focus on what people with Down syndrome “can’t do” or “will never be able to do,” that we’ve found “Born This Way” to be very exciting in presenting what people with Down syndrome can do!”

“The reality is,” she said, “we meet people just like the cast at our convention each year. And we also meet individuals who use assistive technology to communicate or who need a caregiver nearby to get through each day. They all bring unique qualities into the world.” On that note, Sean’s mom, Sandra Assimotos McElwee, told me in an email that when the producers asked for feedback, she told them they should consider adding someone to the cast who is nonverbal.

Among people with Down syndrome, the level of independence isn’t the only thing that varies.

Ms. McElwee, who has written books and keeps a blog about her and her son’s experiences, told me that she and her husband always knew that Sean’s future depended on the supports they could access.

“I know now,” she said, “that we are fortunate to live in a state that provides those supports and services. I hope now as parents see what is possible, they can lobby their own states and school systems to support their children as well.”

She sent me a jaw-dropping list of programs that are entitlements in California for people with disabilities, which means there is no waiting list for them. Her list included things like respite, behavioral therapy and potty training for children, as well as adult support and independent living services. She said years ago, some “mothers from hell” who lived in Sacramento paved the way for this by riding the elevator every day with legislators at the Capitol and told them about their kids and what they needed in services. (Take notes people. Find your state legislators here.)

Compare that to North Carolina, where I live. Melinda Plue, the director of advocacy and chapter development for The Arc of North Carolina, said the state has “somewhere between ten and twelveTHOUSANDpeople on a waiting list for what we call Innovations waiver services.” Waiver services are the menu of supports that make it possible for people with intellectual disabilities to work on specific goals within their home or community.

She said “the people highlighted in this show either have no need for these services, or it seems that they have already them in place.”

Ms. Plue has two children and also provides support to her brother-in-law with an intellectual disability (not Down syndrome) who lives next door, independently but with some of the aforementioned services. She has watched all the episodes to date and says her brother is not a fan of the whole “get away from family” thing that she feels the show promotes. “He prefers us handling lots of his business,” she said. “But those dreams — college, girlfriends, etc., those are his too.”

It is wonderful, she said, “to see that people with intellectual disabilities (and, for the purposes of this show, people who have Down syndrome) can and do lead very independent lives when the support system is in place to make this happen.  It’s great that parents are being portrayed as dream-makers and are finding success for their children.”

She would want to be careful that the show does not discourage other parents of children with disabilities. “There are many people watching the show who have limited financial means and much more challenging needs to support (physically, mentally, emotionally, behaviorally) and whose children have the same potential as the people on this show.”

“There are individuals with disabilities who find the world much less accommodating than these families in Los Angeles, either because their communities haven’t fully embraced their needs, or because the support systems are so different state to state.”

“Good or bad,” Ms. Plue said, “this show is bringing to the surface many issues for which organizations like mine work to change each day.”

Personally, I love all of the conversations this show has started. Ms. McElwee said she “knew the show would introduce the world to seven people with Down syndrome” and had “high hopes that it would be a game-changer for people with all disabilities,” but she didn’t know how exactly that would play out.

Some positive changes she’s learned of include a grocery store chain using a courtesy clerk with Down syndrome for an employee training video and a man who decided to hire two adults with disabilities after seeing Sean’s interview on the show. She has also been contacted by several general educators for advice on how to approach their school districts about including students with disabilities in their classrooms.

“Parents of children both with and without Down syndrome are watching the show together and having important discussions about acceptance, abortion, and making friends with people who are different than themselves,” Ms. McElwee said.

“There’s a multitude of people, previously ignorant, who now are enlightened,” she said. “Television is the most powerful medium.”

I asked if she would be doing anything differently now regarding how she advises Sean because of his involvement in the show.

“The most powerful thing that has come from Sean watching himself on TV is his own awareness,” she said. “We told him that a “ladies man” meant a player. But he insisted it meant that he really liked ladies. He now knows we knew what we were talking about. We believe that learning by mistakes are the most powerful and long-lasting lessons, and we allow Sean to make mistakes, instead of saving him all of the time.”

There has been some pushback about how forward Sean is in his pursuit of a girlfriend. In episode four of Season One, he kept telling Megan he liked her a lot even though she had a boyfriend, and then when he met a young woman with Down syndrome at a convention, one of the first questions he asked was “Do you have a boyfriend?” This made me feel uncomfortable for that woman.

Ms. Plue of The Arc said she found it unsettling that Sean’s behavior toward women was “seen as almost cute.” (To be fair, Sean’s father did have a talk with him about how to treat young women he’d like to date and Ms. McElwee said they taught Sean to ask about boyfriends so he wouldn’t pursue someone already taken.) “If it wouldn’t be appropriate for a peer without a disability to say in public,” Ms. Plue said, “I believe there should be an active effort to redirect the behavior.”

As for Sean, I asked him what he liked about being on the show. “People know who I am now and they are very friendly,” he said. “It’s very fun and I like it when people recognize me.”

Had he gained any insights?

“Yes,” he said. “I don’t want to like other boys’ girlfriends anymore. But I still need a girlfriend.”

In the meantime, he’ll have some good friends by his side. His mom said the friendships depicted on the show are genuine. I say bravo to the cast of “Born This Way” for transcending reality show tropes. Their friendship is the most enjoyable thing about the show.

Catch up on the show at the network’s website, where you can watch past episodes.

Vicki Vila is a writer and editor who keeps a neglected blog at www.modernmessy.wordpress.com. She also has three children, including a son with Down syndrome.

By Vicki Vila

Sometimes having a child with special needs means doing things the hard way. By that I mean the painstaking way.

When our son with Down syndrome was two and a half, which was right after he learned to walk, I stopped bringing the stroller when we left the house. Why was this hard, you ask? If you have to ask, you have never had the pleasure of looking after a crazed toddler. Or in my case, two crazed toddlers. My son has a twin sister, who does not have Down syndrome but does have a great propensity for throwing her body around in dangerous ways and running without caring what she runs into. I loved the time when I could strap both of them, now age 10, securely in their twin stroller. Even then, I knew our days with it were numbered. Oh, Inglesina Twin Swift, we hardly knew ye.

I wanted our son to have as much practice walking, holding hands and following directions as possible. And the only way to do this was to not bring the stroller. Plus, it was obviously good exercise for both twins. I got used to not having it, but sometimes I questioned my sanity. Like the time I had to bring all three kids to the shoe store to get measured for new shoes. Did I forget to mention the twins have a big sister who is three years their senior? At least she is cautious by nature and usually listened in public when she was little.

Right after I finished explaining how we all had to stay together, they ran in three different directions. Big sis oohed and ahhed over the rainbow light-up sneakers that looked as though a unicorn threw up on them; little sis got busy trying on all the display models and saying “I want THIS one!” And dear boy started taking down all the price stickers and playing with the high heels. (I’d bet he’d make a cute future drag queen.)

Another mother walked by, very empathetic woman, and said I was brave not to bring the stroller. More often than not, “brave” is a euphemism for “out of your mind.” She left not only the stroller but her actual kids at home. She said she makes two trips, one to measure their feet, and another, without them, to pick out the shoes. Smart lady.

Now, if we were still in New York City, which is where all the kids were born, I’d have to have the stroller with me, because traffic and subways and overly caffeinated New Yorkers do not mix well with misbehaving little leprechauns.

The lack of stroller is only one thing that we do the hard way. It finally dawned on me that when it comes to toddlers, there are no shortcuts to teaching and discipline, double that for a toddler with special needs. For instance, when it was time for our son to clean up a toy — which, due to his attention span would usually be roughly 1.2 minutes after he had pulled out said toy — he would rather run around the house licking everything than listen to an adult telling him what to do. Oh I tried cajoling and demonstrating and punishing and giving time outs and repeating and repeating the request to clean up and refocusing him. But about the only thing that had a shot at working was to make a song out of it. So here’s a look at me, a very disgruntled Mary Poppins, giving it my best shot:

(Hum to the tune of “Clean up the House,” from “Bear in the Big Blue House”):

“Clean up the blocks, clean up the blocks, ev-ree-bod-dee clean up the blocks. Let’s clean up the blocks, let’s clean up the BLOCKS, please would you JUST CLEAN UP THE BLOCKS. Let’s do it right now, let’s clean up the blocks, oh-my-good-ness clean UP those gosh-darn blocks.”

By this point my blood would be about to boil over from being so darn fake-cheery. But every once in a great while, the singing worked and my son would look at me like a switch just clicked in his brain. He smiled, and started cleaning up, his sisters usually pitching in to help if they weren’t busy making each other cry in frustration.

It’s hard enough to teach a typical toddler to clean up, but that much more so when your toddler has sensory issues to boot. Meaning that his desire to run around and lick and/or touch everything is due to a neurological need for input into his sensory system, a situation common in children with Down syndrome and low muscle tone. We worked hard on that when he was little, focusing attention on figuring out how to meet some of these needs with activities like heavy lifting, wearing a backpack, jumping on a trampoline or swinging on our swing. We also added a behavioral therapist to our repertoire, and we really liked her. I recommend thinking of a behavior therapist as a necessity for any toddler or preschooler with Down syndrome (assuming you can get it covered through insurance, which is often but not always possible).

She basically taught me that more things must be done the hard way. I told her I would have preferred the “magic wand” package, where you just say or do the exact right thing and children listen immediately. Wasn’t there something like that? Maybe in the bottom of her bag? No, no there wasn’t, I’m afraid.

It’s nice to know that some labor-intensive things will pay off — for instance, she suggested spending just 10 minutes a day with each child separately playing on the floor so they can get the attention they crave, which over time will build a better relationship and make discipline easier. I loved that suggestion and tried to do it as often as I could. (I STILL need to make a point to give each child their own special time, and some weeks I do a better job than others.)

But it would be great to have something to quickly extinguish some of the extremely undesirable repeat behaviors. For instance, are those of you without children aware that some little kids enjoy LICKING SHOES?? Especially dirty ones. And not just one time, but EVERY TIME THEY GET THE CHANCE! I’m talking the soles of the shoes, people, things that are dirtier than even your toilet seat is after chili night. These two twins would put the most disgusting things in their mouths as toddlers, especially our curious son.

Ah well, at least we had a bigger house after we moved to the suburbs from the city, and that meant more room to play with appropriate toys and not dig around in dirty corners, which would have been more abundant, and dirtier, had we stayed in New York. I miss the culture of the big city and its myriad pockets of creative weirdness, but I have to say this is a nice place to do things the hard way.