Down Syndrome

We recently were able to do a summer surf day with a group that helps people with disabilities. My son was super excited! This was the third time he had attempted to surf, and was soooo looking forward to rocking it! On the day of the event, he became very nervous. We weren’t really sure what thoughts were going through his head, because he has a hard time expressing his emotions. But, we had helped him to visualize the hope of standing up on board and how to balance. When we arrived we were greeted by some highly enthusiastic amazing volunteers. They were as excited to see him, as he was to see them. It was awesome! They got him into his water vest. They got him lacquered up with sunscreen. He was ready to go! A volunteer asked him, “Are you ready to go?!” My son said, “ Kinda sorta…” Which caught all of us off guard. To us, who knew him, we knew that he was just saying he was a little nervous. Nervous and excited can sound alike for my son and many others who have a language challenge. Sadly, they took it to a different context. They took it to think that he was nervous/scared to go out. I could see several of them look at each other. I hurriedly said to several of the volunteers, “He is a good swimmer and is ready to do this!” But I could tell they had made up their minds. Without asking questions. And off they all ran to the water. I realize in reflection that I didn’t clearly state our goals. I didn’t clearly state what his hopes were. But, no one asked either. So, when he went out into the water with his team, they were excited that he laid down on the board and stayed on. They were excited when he got to his knees. They cheered ecstatically! But they never attempted to get him to his feet.Not once. They never asked what his capabilities were. They never presumed competence. They never assumed he could! They never got past “safe.” They didn’t even allow him to try. They did not allow him the dignity of risk and allow him to try and fail. We are all humans. It’s OK to try. It’s OK to fail. But not trying — that’s not truly living. Not for anyone. While the day was gorgeous and beautiful, and we were out by the water surrounded by uplifting amazing volunteers, the day fell a little flat. We can chalk it up to just being a fun and awesome event — but it could have been so much more. I wish he could have tried. I wish he could have celebrated doing something new. Please have higher expectations!

“Friends multiply joy and divide grief.” Cicero What are your most significant school memories?  Probably not basic fractions, but definitely your best friend.  Maybe you can’t recall historical dates, but you can’t forget your first date.  You never mastered literature, geometry, or physics, but you learned lessons about being a friend, losing a friend, and how to live and work with others. Many students with disabilities find social situations challenging. They leave school unable to build meaningful relationships, cooperate at work, and sustain systems of support in their lives. So why don’t we talk about social skills at IEP meetings?  Parents who worry about this are often told they are more concerned with socialization than education. In fact, the law says socialization is part of education.  Building social skills should be a key piece of the Individualized Educational Plan (“IEP”).  The value of consistent, positive peer relationships must be considered when determining program and placement. Special Education Includes Social Skills According to IDEA (the main federal special education law), the IEP must address both academic achievement and “functional performance,” which includes social skills.  20 U.S.C. § 1414 (d)(1)(A)(i)(I).  The IEP is supposed to prepare students “to lead productive and independent adult lives,” which requires working cooperatively and sustaining systems of support. 20 U.S.C. § 1400 (c)(5)(A)(ii). The federal courts have said an IEP must “target all of a child’s special needs, whether they be academic, physical, emotional, or social.” Lenn (1st Cir. 1993).  Educational benefit means more than “purely academic progress.” Roland M. (1st Cir. 1990). “Learning to associate, communicate and cooperate with nondisabled persons is essential to the personal independence of children with disabilities.” Oberti (3d Cir. 1993). How to Incorporate Social Skills Development Into Your Child’s IEP 1. Make it a goal. IEP goals address the most significant needs.  If the student struggles with social skills, there should be a specific IEP goal to address that.  This will ensure that necessary supports and services are provided (for example, counseling, technology, speech services, and social groups).  It will also require the school team to monitor progress.  There are many good online resources with sample goals. 2. Consistency is key. Dr. Julie Causton says that friendship = time + shared experiences. Friendships don’t form overnight for anyone, but especially for students with challenges.  Having classmates who “know” you and understand your communication style and personality is priceless.  When discussing removing a student to a “special class,” consider the impact on the friendships (or budding friendships) the student may have developed.  Ask whether grouping students who struggle with social skills together is the best way to build those skills.  Consider the benefits of a general education class in the student’s home school, which includes a fairly consistent group of age-appropriate typical peers who live (and play) in the student’s community and provide a natural network of support now and in the future. 3. IEPs are not confined to the classroom. Students with disabilities are entitled to equal opportunities to participate in non-academic settings, including extracurricular activities.  IEP meetings should include conversations about clubs and sports that might be of interest and IEPs should provide the supports and services the student needs to access those activities.  Parents should also consider community opportunities (such as Scouting, summer camps, martial arts, and drama) to build skills and create connections (and memories) that last.

In the last several years, parents have become increasingly concerned with both teaching and respecting their children’s boundaries. We know it’s not good to force physical affection. We listen when a child says no to over-exuberant tickling. However, when a doctor tells us to restrain our child for a procedure, we rotely do as we’re told. This isn’t as black and white of an issue as some of the other rules around boundaries because we do have to make sure our children get the medical care that they need, but I believe we restrain children — especially those with a disability — far more than we have to. No doubt, there is a very real dilemma between receiving necessary health care and respecting a child’s physical independence. My 14-year-old son Bobby has Down syndrome and a congenital heart defect that put him under constant medical scrutiny for the first three years of his life. He underwent countless blood draws and imaging exams. I restrained him for all these tests because the interventions were, quite literally, the difference between life and death. That said, there were very real, long-term consequences to my decision. He became so wary of these tests that for years he would retch uncontrollably when entering a doctor’s office. His symptoms have improved over time, but the trauma is still with him even today. During those early years, physical restraint was a necessary evil. I did what I had to do. However, I do have a deep regret that this modus operandi continued in much less dire situations. Medical personnel tend to rely on restraint because it’s often the quickest and simplest way to gain cooperation — not because it’s the only choice. I, unsuccessfully, tried to hold 8-year-old Bobby’s head still for a dental exam. I restrained a screaming 9-year-old Bobby while the doctor cleaned wax out of his ears.  We’ve had three adults hold him down for blood draws. These restraints were wrong for two reasons. First, the procedures did not fulfill a life-saving need. Second, Bobby was old enough to be reasoned with. I am a seasoned navigator of the health care system, mostly from dealing with Bobby’s multiple hospitalizations and large medical team. I know that a doctor’s advice should always be subject to questioning — medical professionals are not infallible. But even then, I have sometimes fallen into the trap of unquestioningly following doctor’s orders. When Bobby’s ENT instructed me to hold him down, I did what I was told instead of defending my son’s right to bodily autonomy. In hindsight, I should have slowed down the procedure and either worked with Bobby to facilitate his cooperation or I should have declined the ear wax removal for that visit. There’s always another day and, if it comes to it, there is always another doctor. As Bobby has gotten older, we have been able to work with him so that he does voluntarily cooperate with medical procedures. Bobby doesn’t understand the exact details of every test he undergoes, but he does have a basic understanding that doctors and nurses work to keep him healthy and strong. In addition to explaining that medical procedures are a necessary evil, we have developed healthier routines to manage his anxiety. We prep him for each appointment by setting expectations about what is to come. We engage in positive reinforcement, telling him how brave/strong/big he is. I sit behind him and hug him through blood draws. I hold his hand and talk him through imaging exams. I sit at his side while the doctor examines his ears. Finally, we set realistic expectations for Bobby. After multiple intubations as a toddler, he has significant oral aversions. We have had dentists recommend physical restraints but instead found someone who could and would perform sedated exams/cleanings. Bobby has a paralyzing fear of operating rooms and so we use pharmaceuticals to lessen his anxiety on the occasions he’s going under anesthesia. I have mixed emotions about using drugs, but strongly believe the reduction in trauma is worth it. Will I ever restrain Bobby again? In an emergency situation, I might have to. I’m not going to allow him to die for lack of cooperation with medical care. However, those situations are fortunately rare. More likely my job going forward is to act as Bobby’s primary defender against a medical establishment that uses physical restraint as the de facto solution to a child’s refusal to cooperate.

Last Friday, my 26-year-old son, John Cronin, traveled to Massachusetts General Hospital in Boston to enroll in a medical research study examining the connection between people with Down syndrome and Alzheimer’s disease. John enrolled in this study to do his part for people with Down syndrome and to help change what is a dire outlook for himself and people with Down syndrome. Nearly Every Adult With Down Syndrome Will Develop Alzheimer’s Disease A person with Down syndrome, a person like John, has a 95 percent chance of developing Alzheimer’s disease by age 65. Most people with Down syndrome will begin showing signs of the disease as early as their 40s. In fact, Alzheimer’s disease is the leading cause of death in people with Down syndrome. The Washington Post reported: “Of the 210,000 people with Down syndrome, about a third have Alzheimer’s, or are at high risk because of their age, with the average age of diagnosis about 54. The illness worsens relatively quickly, with individuals dying within four years.” Take a moment to consider those numbers. I am John’s father, and our family has already seen what Alzheimer’s can do to another family member, how devastating to the person and for the family. It can be overwhelming to sit here and think that John has within him this awful disease waiting to wreck him from the inside out. When we talk about Alzheimer’s disease, it is deeply personal. John and others with Down syndrome are not statistics, they are our sons and daughters, brothers and sisters, friends, relatives, and co-workers. John has a lot to live for. He leads his own business (John’s Crazy Socks), he’s active in the Special Olympics and he leads a full and active life. We and John cannot sit idly by. We have to take action to change the path that leads to Alzheimer’s. Enrolling in the LIFE-DSR Medical Research Study John enrolled in the Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR), a multi-year, coordinated research study by medical and academic professionals to track and analyze the medical and physical data of 270 adults with Down syndrome. We were introduced to the study by our friends and charity partner, LuMind-IDSC Down Syndrome Foundation. LuMind IDSC is committed to accelerating research to increase the availability of therapeutic, diagnostic, and medical care options for people with Down syndrome and they empower families through education, connections, and support. Good News Leads to Bad News To put the facts about Down syndrome and Alzheimer’s in context, we start with some good news. Medical treatment and the health status of people with Down syndrome have continually improved and life expectancy has climbed. What’s going on? People with Down syndrome often face significant medical challenges and many of those challenges present at birth. In the past, the infant mortality rate for people with Down syndrome was very high, but medical advances have led to different outcomes. Take John as an example. On his third day of life, he needed a bowel resection as his intestine was blocked and not fully formed. Nearly 50 percent of people with Down syndrome are born with a heart defect and that was true for John. Before he was three months old, John needed open heart surgery. He had two holes in his heart which led to congestive heart failure. A few years earlier, those life-saving procedures did not exist. Medical experts estimate that a person with Down syndrome has a life expectancy of 60 years. I do not think they really know because medical treatment and supports continue to improve so people are living longer and longer. The good news is that people with Down syndrome are living longer than ever. Now the bad news: that means they will live long enough to develop Alzheimer’s disease. I will not go into the details of the medical science. (If interested, here is a link to get you started.) Suffice it to say that Down syndrome results from having an extra 21st chromosome (remember, we all have 23 pairs of chromosomes). Thus, people with Down syndrome have a little bit extra. However, the 21st chromosome is also associated with Alzheimer’s disease. Hope Is Growing Alzheimer’s disease is complex and is proving difficult to undo. However, scientists have made great strides in identifying biomarkers that can identify the early signs of Alzheimer’s disease and track changes in the brain. The biomarkers will make it easier for scientists to develop ways to prevent Alzheimer’s. Scientists are already working on drugs that can slow or prevent some symptoms of Alzheimer’s from forming. They expect to begin to conduct clinical trials with these drugs soon. Let’s put this in a human context. It gives John and people with Down syndrome a reprieve; medical research is offering hope that their fate can change. Medical Research Studies Matter Medical research studies matter because they provide the data that scientists need to identify the causes of Alzheimer’s and ways to prevent the disease. And as drugs designed to prevent Alzheimer’s move into clinical trial stages, researchers will need test panels to study the efficacy of the drugs. If you know John, you know that he derives happiness from doing for others. John wanted to join this study because he knows other people are dependent on this medical research. And it was easy. We spent a morning at Mass General. The doctors and staff were organized and supportive. John underwent a simple medical exam that was no different than an exam he would undergo with his primary care doctor. He then sat for an interview that assessed his abilities. At the same time, researchers interviewed my wife and me to learn about John’s medical history and to ask questions to help assess his abilities. “It was easy,” said John. “I am so glad I joined this study.” He is so proud of himself for helping researchers who are helping people with Down syndrome. You Can Make a Difference If you are a person with Down syndrome or have a family member with Down syndrome, please consider joining the LIFE-DSR study. The study is currently taking place at 14 sites in 10 states and welcomes participants from all across the country. If you need help with travel, they can help you.