Holly Zipperer - The Down Syndrome Association of Greater Charlotte

Author: Holly Zipperer

Better Together: Donuts & Coffee for a Cause

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.”

David and Lisa Cooper get to work alongside their adult son, Zach, each day as they make doughnuts, cinnamon rolls, apple fritters, and other sweet delights at Down for Doughnutsin Mooresville, NC, which is north of Charlotte. Zach has Down syndrome and families like the Coopers understand the difficulties of finding employment for those with disabilities. In fact, a comprehensive study commissioned by Special Olympics found, “unemployment among people with intellectual disabilities is more than twice as high as for the general population.”

“It’s hard to put into words, to be honest with you,” David says about the Donate for Doughnuts partnership, as emotion fills his throat. “It’s not only the largest single order we’ve had since we opened seven months ago [in March as the pandemic hit] but this order is going to enable us to expand and hire, we hope, at least one to two more individuals with disabilities. We have seven employees with disabilities and our goal is to get to nine.”

 

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!”

DETAILS

  • Pre-orders are required at bit.ly/donatefordoughnuts by Dec. 9 for Dec. 18-19 deliveries
  • Sweet Spot Package ($25): a dozen glazed doughnuts delivered to your business or home
  • Better Together Package ($40): a dozen glazed doughnuts + a 12 oz. bag of whole bean coffee delivered to your business or home
  • Business & residential deliveries to the following 12 counties served by the DSA of Greater Charlotte (Mecklenburg, Union, Gaston, Cleveland, Lincoln, Catawba, Cabarrus, Iredell, Rowan, Stanly, York and Lancaster).
  • All DSA delivery representatives will be wearing masks for safe delivery.
  • To place BULK ORDERS (corporate and residential) of 4 dozen or more, contact DSA of Greater Charlotte Exec. Dir. Holly Zipperer at hzipperer@dsa-gc.org or 215-285-1281.

What Is a Developmental & Behavioral Pediatrician and How Can They Help My Child with Down Syndrome?

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

Are Your Child’s Sleep Issues Keeping You Up at Night? Read This…

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

“The Peanut Butter Falcon” is a sweet portrayal of love, family, and ability

by Alicia Robbins

A man with Down syndrome hands a drawing to an elderly lady in a nursing home. The drawing depicts the man trading his pudding in exchange for the lady’s help in his escape from the nursing home where he, too, is a resident. She agrees, takes the pudding, and pretends to choke on it so that the man, Zak, can bolt out the front door to freedom. A few seconds after Zak runs out of the building, a burly security guard tackles him from the side and the screen cuts black to the opening credits of the film “The Peanut Butter Falcon.”

This shocking yet funny introduction of “The Peanut Butter Falcon” invites the audience to laugh and delight in the antics of the main character of the film, Zak, played by a 34-year-old newcomer actor with Down syndrome, Zack Gottsagen.

“I am young. Carl is old. I don’t know why I’m here.”

Zak has no family in “The Peanut Butter Falcon” and is forced to live in a nursing home in North Carolina. A young woman who works at the nursing home named Eleanor, played by Dakota Johnson, cares for Zak. Zak passes his days watching videos of a famous wrestler called the Salt Water Redneck. The Salt Water Redneck invites his viewers to come on down to attend his wrestling school in Aidan, North Carolina. Attending this wrestling school is Zak’s dream and the motivation behind his attempts to escape from the nursing home. Eventually, with the help of his aged roommate Carl, Zak escapes the nursing home in the dead of the night wearing only a pair of tighty-whities.

Zak wanders the North Carolina rural coast until he meets fisherman Tyler, played by Shia LaBeouf. Tyler is on the run from the law and some fishing enemies. He agrees to accompany Zak to the wrestling school in Aidan on his way to Florida. As Tyler and Zak journey, Eleanor searches for Zak so that she can bring him back to the nursing home. All three characters eventually meet up and travel to Aidan to find the Salt Water Redneck’s wrestling school.

According to Indiewire.com, “The Peanut Butter Falcon” led last weekend as the best of the week’s new releases. The Regal Manor Twin, the theater in Charlotte where I saw the film on Saturday, August 10, 2019, was packed with a wide range of viewers. Lindsy Maners of Charlotte has a 10-year-old son named Branson with Down syndrome. Maners saw “The Peanut Butter Falcon” on opening night, Friday. Maners spoke on the film’s growing popularity: “So many people want to see a movie that lets someone with Down syndrome be the hero. It’s amazing as a parent that people with no connection to Down syndrome want to see the movie.”

Although “The Peanut Butter Falcon” and its star, Gottsagen, have garnered attention and popularity across the nation, it was against the odds that the film was even made. Gottsagen’s dream since he was a child was to be an actor. According to the South Florida Sun-Sentinel, Zack studied acting at the Alexander W. Dreyfoos School of the Arts in West Palm Beach. Additionally, he taught acting and dance at a local Jewish community center and worked as an usher at Alco Boynton Cinema. The paper also reported that the writers and directors of “The Peanut Butter Falcon,” Tyler Nilson and Michael Schwartz, met Zak at Zeno Mountain Farm in Los Angeles where they were working as volunteers. Zeno Mountain Farm is a camp where people with and without disabilities work to create short films. Nilson told the paper:  “We saw Zack give a performance in a short film that was really, really fantastic.”

According to the paper, although Nilson and Schwartz were on a budget and living in a tent, they wrote “The Peanut Butter Falcon” around Zack as the main character. No one they sent the script to would read it. Eventually, they made a short trailer and sent it around. Shia LeBeouf saw the trailer, read the script, and asked to be in the film.

Both the directors and the actors recognized Zack’s talent, and it shows in every interview they give. Melissa Buczek, whose 3-year-old son William has Down syndrome, attended a Q&A with directors Nilson and Schwartz after seeing the film last week. “One of the best parts of hearing the directors for me was how highly they respected Zack and how seriously they took his acting,” said Buczek, who is the Site Coordinator for Gigi’s Playhouse Charlotte, a new achievement center that offers free recreational, educational and therapeutic activities for people with Down syndrome. “He was a colleague, a friend, and a professional, and oh yeah he just happened to have Down syndrome, but who cares. They gave Zach the privileges and respect that most actors only dream of. This is what I hope and pray for all of my friends who rock an extra chromosome.”

“When people say retard, they’re talking about all he can’t do.”

“The Peanut Butter Falcon” shows a full, fleshed-out portrayal of an adult with Down syndrome. Lindsy Maners liked how the film never portrayed Zak as needy. The film showcased Zak’s abilities rather than his limitations. Maners said that “Showing Zak slowly learning things that he at first couldn’t do shows that you can’t limit someone’s potential.” Zak was able to swim after Tyler taught him. Tyler taught Zak how to shoot a gun and Zak utilized that skill when villains came after Tyler in the night. Maners particularly liked this moment because when Zak tried to protect Tyler, Tyler did not take the gun away. He believed in Zak and trusted him to defend him.

Another important moment in the film demonstrative of Tyler’s belief in Zak’s skills happens when Eleanor catches up with the two men. All three are floating on a makeshift raft and Eleanor and Tyler have an important conversation as Zak practices holding his breath underwater. Eleanor had been overly concerned with Zak, asking about his blood sugar and babying him in comparison to how Tyler treated Zak. Tyler says to Eleanor: “When people say retard, they’re talking about all he can’t do.” The film is interspersed with sharp jabs of slurs like “retard” and “retarded,” but never from the mouth of Eleanor. Yet, as Maners said, “It doesn’t matter what you say about someone, it matters how you treat them, because actions can say as much or more than words.” In coddling Zak, Eleanor is emphasizing all that he cannot do, a point the film is trying to highlight.

“We can be a family.”

The film also illustrates the power of love and loving without judgment. Once Tyler opened up to Zak and as Maners said, “recognized his pure soul” they became great friends.

JT Rea, 29, has Down syndrome and was in the audience at the Regal Manor in Charlotte last week to see the movie. (He is pictured holding the poster below. His mother, Sherri, and brother, McClendon, are on the far right with director, Nelson on the far left and director Schwartz wearing the ball cap. Melissa Buczek is second from the right. Also pictured are Ernie Hoag, Down Syndrome Association of Greater Charlotte board member, and wife, Robin.) Asked what he liked about the character Zak, he replied: “What’s not to like? He’s smart and clever, especially when he escapes the nursing home and also throwing his nursing friend’s car keys in the ocean. That was funny. Just like me, he knows what he likes and wants.” With Zak’s humor, intelligence, and kindness he changes the hard and tough Tyler for the better. Rea also said that when Tyler and Zak become friends, Tyler “sees that it doesn’t matter if somebody has Down syndrome, he is just a regular person.” Rea hits it on the nose there. All people have different abilities and skills that can enhance both their own life and the lives of others. As Maners said, “Zak doesn’t wait to love.” Maners sees this same loving quality in her 10-year-old son, Branson, “everyone is his new best friend.” Zak loves Tyler without judgment of his past mistakes.

The love that Zak gives Tyler in the film is a shadow of the love that Zack Gottsagen brought to Shia LaBeouf. LaBeouf gave an outstanding performance onscreen, indicative of his true relationship with Gottsagen. According to the Sun-Sentinel, LaBeouf was arrested in 2017 while they were shooting “The Peanut Butter Falcon” and charged with obstruction, disorderly conduct and public drunkenness. When Gottsagen heard about LaBeouf’s arrest, he confronted LaBeouf at a cast party. LaBeouf later said, “To hear him say that he was disappointed in me probably changed the course of my life. Zack can’t not shoot straight, and bless him for it, ’cause in that moment, I needed a straight shooter who I couldn’t argue with.”

“I wanna be a hero.”

“The Peanut Butter Falcon” is a Mark Twain story revived anew by the main character of Zak and his capacity to love without judgment. The hero’s journey archetype has been utilized in countless films and stories starting from the time of Homer’s great epic the Odyssey. Yet, the hero’s journey has never been done with a hero like Zak. People with Down syndrome deserve to have a hero’s journey and ending too. Maners said that the movie “shows people that someone within a nursing home with Down syndrome has potential, something to offer the world, and a whole life to live.”

“The Peanut Butter Falcon” was released in select theaters on August 9. It will be playing until August 22 at the Regal Manor Twin in Charlotte, is playing now at AMC Concord Mills 24 in Concord and will begin playing on August 23 at the Regal Birkdale STM 16 and RPX in Huntersville. Check your local theatre listings to see when “The Peanut Butter Falcon” plays near you.

Biography:

Alicia Robbins is a 2nd year student at the UNC-Chapel Hill School of Media and Journalism. She spent this summer at home, where she is the neighbor of a boy with Down syndrome.

DSA of Greater Charlotte is offering to DSA of Greater Charlotte families and friends two FREE screenings of “The Peanut Butter Falcon” THIS SATURDAY, August 24, 2019, 11:30am- 1:30pm, at two locations.

Space is limited. RSVP now by clicking on location link below:

AMC Concord Mills, 8421 Concord Mills Blvd, Concord, NC 28027

Carolina Pavilion 22, 9541 South Boulevard, Charlotte, North Carolina 28273

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

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…

Common Sleep Challenges in Children With Down Syndrome (And What to Do About Them)

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.

 

 

To My Son’s School on World Down Syndrome Day

Written by Victoria Vila

March 21, 2019

World Down Syndrome Day

Dear 4th 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!

 

Braces and Expanders: A Parent’s Journey for Her Son With Down Syndrome

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.

Your Resilience Is Not Forgotten

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.

 

The Birth of an Advocate

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

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

The Right Professional Will Make ALL the Difference

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

 

Why hire someone with 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.

INCLUSION. Is it easy? No. Is it possible? Yes.

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.

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