Nina’s interview with Mater Dei student Katie Wildeman
The following is a recent interview between Katie Wildeman, a student at Mater Dei High School in Evansville, IN and Nina Fuller, Founder and Director of SMILE on Down Syndrome:
Katie: I know that my brother has a weird intellectual quirk to where he can watch a show he really likes one time and be able to quote directly from it later on in the course of his daily routine. It seems like he can mentally capture a scene from the show and either act it out or directly quote it. I was wondering if weirdly cool “intellectual quirks” are common in all children or adults with Down syndrome, or if there is even such a thing? Do your daughters with Down syndrome have anything similar that they do?
Nina: Every human being demonstrates “weirdly cool ‘intellectual quirks'” from time to time! In my youth and twenties, thirties, and forties, even, I was able to look at a phone number and have it memorized for years. Not so now that I am in my fifties. However, my six year old daughter with Down syndrome, Hope, has a weirdly cool ability to recall names of people she has barely known. She also has a keen sense of behaviors and often acts out a character’s personality she has seen on television. For example, she came walking up to my desk recently, swaying just like a Hannah Montana character. I knew exactly who she was imitating and stated, “Hello, London. May I help you?” Staying in character, this “mentally delayed” little girl continued to act out one of the scenes she had seen on television. How this will carry over into her personality is yet to be seen. I do know that she has a keen awareness of what is going on around her. My personal theory on such is that they want to know what is going on around them and they work exceptionally harder at managing information that is important to them.
It is my opinion after having the privilege of knowing many people with Down syndrome through the years that each person with Trisomy 21 has an innate sense of people which translates into a very high percentage falling way above average in social skills.
I also have seen that they have an exceptionally high SQ while their IQ on paper may not be very impressive. SQ translates to “Spiritual Quotient” and it is always spiritually inspiring to hear someone with Down syndrome talk to God or sing during church. Their insight spiritually is amazing and comes from a pure heart.
Katie: Also, in your opinion, what do you think about kids with Down syndrome being surrounded by other Down syndrome kids as opposed to them being surrounded by children without Down syndrome. Which do you think is more beneficial for the child as they are growing up? My thought has always been that mentally it would be better if they grow up with kids without Down syndrome, but emotionally and socially it would be better from them if they got to grow up with other children with Down syndrome. Of course I could be totally off base but since you and I are on totally different sides of the spectrum I thought you could help me better understand that.
Nina: There needs to be a mixture of friendships and modeling for people with Down syndrome. Remember in elementary school, especially when learning to read, teachers divided the class into the “Red birds” “Blue birds, and “Yellow birds” or some equivalent? The idea was to put the “poor” readers in with other “poor readers” (Yellow birds) and I believe that re-enforced their feelings of failure and became a self fulfilling prophecy: “I try hard but can’t read well and now the teacher has put me in with all the other ‘dumb’ kids who can’t read. I hate being a Yellow bird.” The opposite side of the room became the Red bird “smart kids” side. The Red birds all began to wear red shirts on the days they had reading circle. They separated themselves from the others because they knew they were smarter and took pride in their looks. The Yellow birds not only hated being yellow birds they began to dislike all the Red birds, too. The poor Blue birds felt like they never fit in at all. Some were able to mature past being a bird of any color and became independent thinkers and eventually proved themselves by becoming athletes!
All that said to illustrate what happens when people with Down syndrome are lumped together. Each person learns at a difference pace and for different reasons compared to everyone else whether or not they have Down syndrome or any other learning disability. There may be two students with Down syndrome in the same class, with the same teacher. Student A will be eager to read their sight words in class because mom works daily with her at home, hugging after each practice. Student B may throw a temper tantrum when it comes to reading their sight words. Why? It could be a variety of reasons, one of which is that mom has to work at night and no one else remembers to practice the sight words at home. The reason could be non-academic. Student B may not like the feel of the index card on which the sight words are written and refuses to hold the card. I believe it is extremely important to allow for creative placement in school, evaluating the student’s needs each year. Sometimes, it is best for a student with Down syndrome to be part time in a Life Skills class and part time in the general education classroom, based on the student’s maturity, personal interests, and ability to socialize appropriately. A system that allows experimentation with placement is a system that truly has the student’s interests in mind. I see this happening when a student’s qualitative measures (i.e. testing) are based on achievements and not standards. This is possible when a student that has been given a diagnosis such as a learning disability or cognitive disability such as Down syndrome as an Individualized Education Plan.
As for socialization of people with Down syndrome, it is my opinion that people with Down syndrome are given the opportunity to shine with their peers in whatever setting that might work. Special Olympics is a great opportunity to compete with peers who may have similar deficits and comparative skills, allowing for competition that is balanced. If an athlete with Down syndrome does not have physical impairment I believe it should be allowed that they would compete with their typical peers. For instance, if a student with Down syndrome loves track and has no health risks with running, he should be allowed to compete at track meets, whether sprinting, javelin or discus throwing, etc. There should be no limit when the student and their parents agree on the commitment. I also have seen a very successful team effort to allow my own daughter to play on her school’s volleyball team. She was not the best or even average player on the team but she had great spirit and tried hard. Her teammates respected her and helped her feel empowered to play and she did a great job with additional assistance! She loved being part of a team and enjoyed cheering her teammates on. It was a win-win situation all the way around.
With each transition of life for people with Down syndrome, there needs to be a collaboration of minds. It is always difficult for parents to let their kids grow up, move out, go off to college, make choices for marriage, or careers. It is a transition for each person involved. Legally, adulthood is recognized at the age of 18, and most people believe they are ready to be adults, whether their parents agree or disagree. With Down syndrome, a person legally become independent at age 18, just . However, it is rare that a person with Down syndrome is ready to living independently at this young age and may never be ready to live on their own. There are more and more stories of those who live independent lives, have jobs, live on their own or with a roommate, go to college and some who are able to drive themselves where they want to go. These are inspiring and give hope for others. It is my opinion that just as students in school have a mixture of unique needs, adults with Down syndrome have differing needs. Some have wonderful support systems within their families. Others have lost their family members due to death or migration and are displaced. I believe that group homes and on site campus living are wonderful resources for many adults with disabilities. On site living provides a sense of security, protection, boundaries, and guidance, as well as social settings. If that is the need, so be it. If a person with Down syndrome can live in a group home as an adult and feel happy and fulfilled, so be it. If a person with Down syndrome is in a loving family environment with as much independence as befits them, and they are enjoying the life they have, live it to the fullest! And for those who are in their very own apartments, welcoming visitors or caregivers several times a week, how wonderful for them!
Life is precarious for each of us. Until our adult children prove to us they are safe and healthy, we will be anxious for them. For those of us who have a child or sibling with Down syndrome, our anxiety is justified to a certain extent. We must celebrate each advance in their life and be there for them as often as possible.
Katie: Can Down syndrome be prevented?
Nina: Down syndrome cannot be prevented. In talking with a genetic counselor, I was amazed to learn that in spite of years of research and even the mapping of DNA, scientists cannot determine the cause of Down syndrome. There are some theories that have to do with basic biology, such as the age of the mother. Women are born with a finite number of eggs and as the woman ages, so do her eggs which possibly may become “defective,” thus causing the anomaly known as Down syndrome. However, 80% of women who deliver babies with Down syndrome are younger than 35. There is also a theory that the contributing sperm may have caused the discrepancy. There is no way of knowing, according to the genetic counselor, whether a child’s Down syndrome was caused by the mother or father. There is also no way of controlling whether the person will have Traditional Down syndrome, Translocation Down syndrome or Mosaic Down syndrome. The type of Down syndrome a person will have is determined at either conception, myosis or cytosis. It is out of the hands of science and man and determined by the Hand of God, in my opinion!
The issues related to Down syndrome have improved greatly over the course of time. With advances in research, medical conditions are being repaired early in life and those with Down syndrome are living much longer lives than those that have come and gone before them. The capabilities of those with Down syndrome is rising exponentially due to early intervention programs, committed clinicians within communities, federal, state and local resources helping families provide therapies for people with Down syndrome, and committed families who have strong support systems. In formally obscure areas, there are now advances in nutritional needs and neuro-developmental programs that help advance the lives of people with Down syndrome.
In spite of all the advances and progress regarding Down syndrome, there is still an astonishing abortion rate of 90% of babies who are pre-natally diagnosed. Currently, live births with Down syndrome are 1 in 700. That means if there were no abortions and pre-born babies with Down syndrome survived birth, we could expect to see 9 in 700 people with Down syndrome at school, stores, workplaces, theaters and the likes. Even though Down syndrome cannot be prevented, there is an unfortunate number of people with Down syndrome that are being prevented, literally.
Katie: What makes a person technically “retarded” mentally?
Nina: The word “retarded” literally means “slow.” It is a musical term in Italian, “ritard” which means to slow the music down for emphasis. The technical aspect of being retarded mentally is to declare that there is a slowness to the mental process of the mind. This is theoretically true in some areas of the brain for people with Down syndrome, and as a matter of fact, for all of us! I am “retarded” when it comes to any math or maps. I excel with words but am retarded when it comes to technical information.
According to certain doctors and nutritionists, the brain of a newborn baby with Down syndrome is the same size and appearance as a baby born without Down syndrome. The theory is that due to metabolic disturbances brought on by the extra (third) 21st chromosome,i.e., an “over-expression of tri-somy 21” there is quicker deterioration within the brain in those with Down syndrome, rendering them “slower” than typical peers. The gap of abilities broadens as children age and becomes more apparent due to continued metabolic breakdowns that have not received interventions.
The currently acceptable phrase for someone who is mentally retarded is “cognitively delayed.” This means the same thing but it sounds softer, gentler and kinder. No matter how it is said, most academic milestones in the lives of people with Down syndrome are slowed or delayed. There will be areas in which they achieve well but it may take them longer to achieve than their younger family members or classmates. There will be areas of knowledge that most others surpass that they may never comprehend. But, isn’t this so for each of us? My knowledge is very limited, yet I know more in some areas of life than others. Certainly, there are those in my own household that are smarter than I am in many areas (but please don’t let them know I know)!
In conclusion, it has been my privilege to meet and get to know hundreds of people with Down syndrome, including two daughters of my own. Each person with Down syndrome is more alike everyone else than they are different from everyone else. They love, cry, express emotions such as joy, anger, frustration, fear; they love to succeed at what they do; they love to be loved, they love to love. They enjoy favorite foods and are disgusted by other foods. They are pure hearted, humorous, hormonal, kind at times and at other times, mean – just like you and me. The difference in people with Down syndrome is that they simply have one extra chromosome in each of their cells. The third chromosome that attached itself to the 21st pair has made all the difference in the world to every person whose life has been loved by someone with Down syndrome!
Note to Reader: Katie chose to interview Nina Fuller on issues relating to Down syndrome because Katie is the proud sister of Joe, who is a teenager with an extra 21st chromosome. The interview was part of an assignment for school. We are hoping Katie received an A!