SVDSN - Our Story
I remember the night my son was born.
I remember his dripping blood filling my cupped palms as my flowing tears drenched our faces.
I remember the nurses, prying his tiny body from my arms, crowding around him, blocking me out as they laid him in the transport crib.
I remember not knowing if I would ever see him again, and I remember drowning in morphine, then toradol, then fentanyl, then vicodin.
What should have been one of the most joyous moments of my life become a living, yet barely breathing, nightmare. “Your son is a retard. He’ll never walk, talk or grow out of diapers. He may not even recognize you, and he is condemned to wearing brown polyester pants, button down shirts buttoned up to the collar, having a pudding-bowl haircut, buck teeth, a drooling lolling tongue and a stoop to rival the Hunchback of Notre Dame.”
What the neonatologist and pediatrician really said was “We think your son might have Down syndrome, and a major life-threatening heart defect. He isn’t getting enough oxygen and we need to transfer him to Stanford, tonight.”
I remember blanking out the bit about Down syndrome, focusing instead on the heart defect. I wanted to know everything about it. I’d lost a sister to a heart defect, and Down syndrome was simply not an option – certainly not with the portrait that I had painted.
For the next seven days, waiting for the specialists to unravel his DNA and confirm or deny an extra chromosome, I alternated between reassuring myself that he did not have Down syndrome, and hoping that if he did, he would die before I had to bring him home. If he died, I would get all the attention and sympathy for having lost a child, without the trauma of this desperately inferior imposter stealing his place.
This was not the Ben I had dreamed about these past eight months. The Ben I was expecting would have his father’s height and musical talent, my outgoing personality and blonde hair, his father’s freckles and intelligence to rival either of us. No. This ill, deformed infant was not part of my perfect family-to-be. How could we go camping and backpacking with this imposter? How would he learn the French horn, or play competitive basketball or scare me witless when he learned to drive?
I remember that the DNA test, his karyotype, came back as infallible evidence that indeed, every single cell of his body was permeated by the invading extra chromosome. Trisomy 21. It’s almost like the kid wasn’t human. With 47 chromosomes, didn’t that mean he wasn’t human?
I had been determined to breastfeed, but that was impossible, he was more than 40 miles away, I had been cut open like a pork roast and could barely stand to sit and pee in a toilet, let alone drive. The nurses brought me a mechanical breast pump. I guess they showed me how to use it, but I just ignored it, begging that the fog of pharmaceuticals and some sleep would bring me a new day and nurse’s apology that there had been a mistake – *this* perfect little baby is my newborn, that that other one. The next day I awoke to no newborn, no husband, no friends and breasts that needed milking. I was shown, once again, how to use the pump. My father arrived with a bottle of champagne and a video camera that was sent straight to Stanford to film the first of his generation in my family. After four days at Stanford, on the day I was to be discharged, I bargained for his return to our local hospital.
The pump became my mission, my only focus in a world of desperation. What else could I do? At least I could pump, right? The kid needed breastmilk, and word from the nurses at Stanford was that he needed my colostrum, that liquid gold produced only by newly lactating breasts. I followed all the directions. I sat in the hospital cafeteria, weeping, forcing myself to eat the meals that I was told would make good milk. I pumped every three hours, round the clock. For three months. At least three months. I started to let down when I heard a lawnmover, or even a chainsaw. It wasn’t natural. It wasn’t normal. I remember yelling and hanging up on a nurse in the NICU who fed Ben from a bottle before I had a chance to try giving him a feed by breast. More than six years later, just two weeks ago on a chance meeting, that same nurse reminded me about that phonecall which I had forgotten.
And dammit, it was worth it. The kid did learn to breastfeed. It took a team of professionals, a lactation consultant, occupational therapist, breastfeeding support group and my mother to get there. But we did. Our house smelled like the inside of an old milk carton, and our freezer had enough milk to make quiche for an army. But, I was still grieving the little boy I had lost.
I remember when Ben became my son. After three months, I said “I love you” and it wasn’t lip service. It wasn’t my duty and I wasn’t just trying to convince myself.
At six months, breastfeeding became a joy, and at ten months, Ben’s first success at sign language was one he invented, asking to breastfeed. We continued for two and a half years. My journeys of breastfeeding and acceptance and consummate love are parallel paths. Both began with duty and powerlessness and both ended with a pure joy that never ceases to amaze me.
Now, at six years old, Ben has been camping nearly every year. Our hikes are slower than they used to be. He tells me that he loves me, many times every day. He wears trendy clothes, has lovely teeth, and an exceptionally cute haircut. He likes to compete with his brother on who can pee the highest on a tree trunk, and he only sticks out his tongue to be rude. He doesn’t have his father’s height or musical talent, but he does love to sing and dance.
He can read and write me notes. He is more outgoing than I ever could have imagined. He has my blonde hair and his father’s freckles and an extraordinary type of intelligence that truly exceeds any I’ve known. You know what? When they used to ask Ben to feed a baby doll in those silly developmental tests…
My friends call me Jon, which is short for Jonathan. I am 31 years old and I have Down Syndrome. My girlfriend is a very a special part of my life. We have been dating for over a year. I like talking to her on the phone, going places and having movie or dinner dates with her.
Most of my interests, besides my girl friend, are related to sports. I participate in Special Olympics. My favorite sport is basketball. I enjoy playing golf with my brother and in Special Olympics tournaments. I exercise regularly and belong to a fitness club. I am a 49ers football fan and a SF Giants baseball fan. I earned my Black Belt in Tae Kwon Do. I also like to play sports theme video games and I like to watch Disney Channel TV as well as the latest DVD’s. I go places like to movies, bowling & miniature golf with friends. I. I take vacations with my family, such as to Hawaii and to New York to see cousins. I have a new passport, so I can travel to Canada next summer. I am a Christian and enjoy the worship service at my church every week.
I am a stock clerk at a local drugstore. I work four days a week and have had this job since 1997. I like my job and the people I work with. I also have a volunteer job at my local library two days a week.
WHERE I LIVE
I live with a friend in a 2 bedroom townhouse condo in a great town. I live close enough to my job that I can walk to work, to various stores, to Starbucks and some fast food places too. I take the bus when I need to travel further, but I don’t mind walking. I walk over a mile to my fitness club. I have lived in this town since 1997. I live about 30 miles from my family and travel home to visit about once a month.
I learned to live independently by being part of a group home community training program which included attending a community college program that taught independent living and career skills. My friend who lives with me is a teacher. He helps me with shopping, laundry and other things that I need. I also have an Independent Living Agency that helps me get my bills paid, keeps track of my money and helps me make appointments. I have a government subsidy for my rent and I have enough money to pay all my bills
I like living independently from my family and I like doing things on my own. My dream is that my girl friend and I will be able to be married one day.
You can find a story about me the book, Common Threads, Celebrating Life with Down Syndrome, And on page 121 in the book, Mental Wellness in Adults with Down Syndrome, there is a picture of my girl friend and I. She is cooking spaghetti for our dinner.
If you want to learn more about how people with down syndrome can live independently, you can contact my mom at email@example.com.
The Bottom Line It may not be the life path we chose, but it is a joy-filled journey well worth making.
“I’m sorry. Your baby has Down Syndrome.” That’s how she said it. The genetic counselor called to give us the results of the amniocentesis, and I could tell by the sound of her voice, before she even said the words. The thing is, I knew before she even called. Call it instinct, or Mother’s Intuition, but I had that voice in my heart, though I had been suppressing for weeks. As soon as I got the AFP results back, I felt it. My son would have Down syndrome. Even so, there is no way to prepare oneself for the confirmation of one’s worst fears. We had been plucked off our well groomed, well lit life path and plopped down into utter darkness, not knowing when the light would shine again and what path would be there when it did.
Grief and Guilt
Grief is the first, and most understandable reaction to such news. My dad, the eternal optimist, couldn’t understand all my tears. He’d immediately logged on and downloaded as much info as he could about DS as soon as we shared the news. From his perspective, we were way over-reacting. I could only explain it as feeling we had lost a child, something my dad knows. Yes, we were still having our son, but all the dreams and plans we had for him and our family were now gone, replaced with uncertainty and fear. As with any grief process, we needed time to process through it. Compounding those feelings, however, were the huge pangs of guilt I felt. At the time, my firstborn son, Nicholas, was only 17 months old. He would be less than 2 years old when his brother joined him, and his well-protected world would be forever changed. I felt as though I had let him down. He wouldn’t be getting the brother I thought he should have, and would want. Now, I worried if he’d be able to play with his brother at all. I worried about him being teased at school for having a brother who was different. I worried that his adult life would be shaped by the responsibility of having to care for an adult baby brother.
But I Don’t Want to be Chosen
As the news of the diagnosis spread, our dearest friends were so wonderfully supportive. We received continuous phone messages, and cards. Mostly, they simply said they loved us and were praying for us and were there if and when we wanted to talk. Some, particularly my mother, wanted to help us try to develop a better understanding, and offered us a simple explanation in the form of “God Chose you to be the mother of this special baby.” I hate to say it, but that really didn’t help. I didn’t want to be chosen. I wanted a “normal” healthy baby. At work, my colleagues were unanimous in the opinion that if there were anyone who had to be given this special child to raise, I was the logical choice. As a teacher, I was the “go-to girl” at my grade level for mainstreaming special needs students. I’d volunteer to integrate them when others would hesitate. Not trying to toot my own horn, but I think (and I believe my former colleagues would agree) I had a gift for teaching the special needs kids. Inevitably, they become my favorites, the ones to whom I become the most attached. I didn’t just enjoy teaching them. I loved them. So it came as no surprise to my colleagues that God would choose me for the task of raising a special needs child. At the time, that was little comfort to me.
A Glimmer of Light
Nicholas, through all of this, was basically unfazed, although a bit perplexed by all the crying. He’d never seen either of his parents cry, and now we were in tears near daily. His response, however, was the beginning of our healing. One afternoon, my husband and I slipped into the bedroom for a cry, leaving Nick to play with his toys. He noticed our absence right away and came toddling in to look for us. He saw us standing there crying, then turned and walked out. A minute later, he returned with one of his favorite toys in his hand being offered up to us. That’s where our healing began, in the tiny hands of our 18-month old. He saw we were unhappy and wanted to make us feel better. Even at that tender age, he cared about the feelings of others, and tried to do something about it. I knew then that God HAD chosen not only me, but also my family, to love and care for this special child. Nicholas was going to be the perfect big brother for our new son. I started looking forward to their meeting.
What’s in a Name?
As we began to emerge from the darkness, we set about looking for the perfect name. With both boys, I gave my husband charge of the first name (although I reserved veto rights) and I chose the middle names, always from someone in my family who was important to me. When Nicholas was born, I chose for his middle name the middle name of my youngest brother, who died when I was eight. My husband didn’t want to use his first name out of respect to my parents. He chose Nicholas without much thought. It was a name we both like and so that’s what he chose. For this child, however, he spent a great deal of time looking through the baby name book, searching for a name whose meaning spoke to him. One afternoon, after a couple of weeks worth of searching, we were all relaxing on the bed, Nicholas and I playing while my husband flipped through the book. Without saying anything, he put the book down and started to cry, leaning over on my lap for some comfort. Nicholas immediately climbed on him to hug him. Quietly, he told me he found the name, and handed the book to me, pointing to the name. “Gabriel: Meaning – Hero of God” and the name of my own baby brother.
My parents gave us their blessing, I gave Gabriel the middle name George after my grandfather, and we set about preparing ourselves for his arrival. I won’t lie and say it suddenly got any easier. It didn’t. But giving him his name made it more real, more personal. We weren’t just having a baby; we were having Gabriel, a person. The roller coaster ride continued, but the ups and downs became less severe as time went by.
Educating Ourselves while Dealing with the Uneducated
We didn’t exactly dive right into research. We had to weed through many emotions before we were emotionally capable of reading about all the risks that come with Down syndrome. We started slowly as we got closer to the due date. We were fortunate to be under the care of a wonderful perinatologist who was as adept at calming parents and talking to them sensitively as he was at medical procedure. The genetic counselor was also helpful and a wealth of information. The most difficult part for me, wasn’t learning about my son’s condition, as much as dealing with people who didn’t bother learning about my son’s condition. As I mentioned before, the first thing my father did when we broke the news was to get on the internet and download as much info he could find. The very next day he handed me several pages of stuff he had printed out for me and assured me it wasn’t as bad as I was making it out to be. Sadly, not everyone around us was so resourceful. I will never forget the day I was asked, “Have you used up your extra chromosomes on this baby? If you have any more will they be okay?” I was so dumbfounded by the query, I hardly knew what to do. If I hadn’t been merging onto a freeway at that exact moment, I may very well have slapped the person. I remained calm, however, and responded simply with “Since this has happened once, the risk goes up for it to happen again” and left it at that. As soon as I was out of the company of that person, however, I cried, and continued to cry, off and on, for 2 days. This was near the end of the pregnancy, so this person had known for several months at this point, and I was hurt and upset on more than one level. First, the insinuation that I had somehow caused this, that it was my fault that Gabriel had Down syndrome. Second, that this person had known for months and hadn’t bothered to so much as check out a book form the library or do a google search on basic High School biology. I had too much to deal with. I didn’t have time to educate the masses.
Anticipation, Elation and . . . Crash
As we neared the due date I became anxious for the birth. Though we had done research and were prepared for the various medical risks coming our way, I was still praying the same prayer every night: “Dear God, Please grant us a miracle and heal our son.” I can say now I got half of my request. The rigors of being pregnant while tending to the needs of a 21-month old were really wearing on me and I was more than ready for Gabriel to arrive. Five weeks before the due date, the perinatologist told us Gabriel was still breech and suggested we talk with the OB about monitoring him carefully. At 36 weeks, (4 weeks before due date) he still hadn’t turned, and our OB scheduled a version, a procedure where they manually push the baby around. We came in at 37 weeks, 2 days and the OB successfully flipped him around. Four days later, my water broke, and Gabriel George was born exactly 2 weeks early weighing a healthy 7 pounds even. He cried a beautiful cry, and I breathed a huge sigh of relief! (Nicholas had been born with the cord around his neck and was rushed away because he wasn’t breathing). They handed me our son and I got to look into those dark gray eyes. He was beautiful! We were so excited that he was here and we loved him so much! It was a wonderful birth. Then, they wheeled him away. They told me that his oxygen was a little low, they were going to go get it back up and they’d be back soon. After 20 minutes, my husband came back and said it would be a little bit longer and he went back to be with our son. Eventually I was wheeled from the delivery room to my own private room, where I waited. At noon, they said it would be another half an hour. Then my husband came back again. Our son was being transferred to the Neonatal Intensive Care Unit, or NICU. Then he left again. My son was born at nine in the morning. I didn’t get to see him again until after 4pm. As happens with roughly fifty percent of all babies with Down syndrome, our son was born with heart defects. Four of them, to be exact. He spent 10 days in the NICU, then went home with oxygen tanks, for another ten days. Those first days were hell. Leaving the hospital without the baby to which you’ve given birth is a heartbreaking experience. At the same time, Nicholas began to feel the effects of his parents disappearing to the hospital everyday, and started to scream and cry every time we left him with my parents, a place he usually preferred. I felt like I had let down (and was losing) both my sons.
A New Path Revealed
Fastforward to the present: Despite a rocky beginning, Gabriel is now thriving. He is now four years old with an extremely determined (stubborn) personality, along with a mega-watt smile and the best laugh I have ever heard! He had open-heart surgery at 7 months old to repair his heart, and it’s as good as new now. I asked the cardiologist at his follow up “I just need to know, when he’s big enough, can he ride Space Mountain at Disneyland?” He assured me that my son could ride roller coasters, just like any other kid. Gabriel has developed a great love of music and dance, and has been taking tap lessons for a year. He loves to perform and is always the star of the show! He ADORES his big brother Nicholas and his new baby brother Elijah. The three of them love to cuddle and kiss and wrestle together, and Gabriel is very affectionate with both of them. The love between the three of them is enough to bring tears to your eyes. We can see the path now. It’s not the same one as before, but that’s okay. We can see up ahead there will be some rocky patches, and a few potholes, but along the way, the colors are more vibrant, the aromas sweeter. It’s a lovely path, and I’m glad I’m traveling it.
What Have I Learned?
Gabriel has brought us so much more than joy. He taught us how to appreciate the difference between big things and little things. As it turns out, life is mostly little things and I don’t think most people can see that. Gabriel has pushed me to think outside my box, forced me to be more patient, and enhanced my ability to appreciate beauty beyond the obvious. I think I am a much better parent to both Nicholas and Elijah because of Gabriel. When Nick was small, he had some tactile sensory issues – he couldn’t stand to have anything on his hands. No dirt, no sand, no paint, no food. Then one day, while I was in the shower, Nick got into the paints, got it all over his hands and made handprints all up and down the hall walls and doors. I was so excited, I took pictures. I don’t think I would have appreciated that as a milestone if it hadn’t been for Gabriel.
When I look at Gabriel, my heart is filled with the anticipation of what is possible, because the most important lesson I have learned is that Gabriel is NOT very different from other kids. Gabriel will grow and change and he can love and feel and have hopes and dreams, just like all children. He may face challenges in this life that are not the same challenges others face, but in the end, those challenges do not make him that different. He will learn and achieve, and make a difference in this world, just as his brothers will. As for me, I have dreams for my sons, as do all parents. I am saving for their college education. I will encourage them to follow their passions and become whatever they want. I will teach them how to be caring, loving individuals, and hope that they will find someone wonderful to share their lives with when they are grown. I want them to live lives filled with joy, love, meaning and fulfillment. All of these things are possible. When it comes to the things that matter most, my three sons are exactly the same.
My name is Kim. I am 28 years old and I have Down Syndrome. My life is
very good. I live with my parents and my cat and my dog.
I have a volunteer job as a teachers aide. I work in a kindergarten
class and also help in a special needs class. My boss was my teacher at
one time. I read to the kids, do arts and crafts, help with the
computers and talk with the kids. I love my job.
My hobbies are dancing, acting, and singing. I have taken dance classes
since I was 5 years old. I have taken tap, jazz, ballet and hip hop.
The dance recitals are the best part. I like to perform in front of
audiences. I also like to write speeches and give them. I gave the
speech at my friends fathers retirement party and also at the Buddy Walk.
I like bowling too. I have my own ball and shoes. I also bowl in
I like to use sign language. I started using sign language when I was 20
months old. I like to sign to deaf people. I also sign in the choir at
my church. It is fun to keep learning new signs even though I can speak.
I have a boyfriend. He is so handsome and he has Down Syndrome. We like
to have romantic candle light dinners at my house. We also watch our
favorite movies and play checkers. I would like to get married to my
Thank you for letting me tell my story. Kim
Every baby is a blessing. Every child is a gift.
As parents of a child of special needs, we help others see what a gift our child is. It may not be obvious to those who do not spend every day with our child — sitting on the floor in mommy’s lap, cuddling together and asking to be read to, or whirling around in daddy’s arms, the house filling with the infectious joy of baby laughter. It may not be obvious to someone who only sees our child for a few seconds in a grocery store, for a few minutes in a doctor’s office, for a few hours in a classroom. Sometimes, it is not obvious to us until we have lived with our child long enough to see past the way the world defines him and know him for who he really is.
A vital aspect to the work that PHP and the parent groups do is the support they provide to us in our most important job as parents of a special-needs child. They remember that we haven’t always been the parents of this very special child, even though we have only come to know each other once we have been given this label. They understand that no matter how long we have been the parents of this very special child, whether for a day or two or for twenty, thirty or more years, we are still learning what that means. We are still learning how to help others see past the “needs” until they reach that special child that we have come to know and love so well. Our sons and daughters, who love to play and have fun and do the same things that other children love to do, but maybe not in exactly the same way. Our children, who have thoughts and feelings, opinions and desires, even though they may not be able to express them, much less speak them in a way that the whole world can understand. Boys and girls, who want to be understood and loved for who they are, just like other children. This is what we, as parents, see: children more like than unlike their peers, even if the rest of the world sees and says otherwise. The people at PHP and the parents they bring together know and share this intimately well, and bring strength to each other in this connection.
We all come here in a time and place in our lives where we may feel isolated or distant from the definition of what it means to be parents. We may suddenly feel disconnected from friends we have known our whole lives, family who support us but don’t fully understand, other parents who have what we now know to call “typically developing” children. Being a parent now may be defined very differently from what we initially anticipated– before our child became a part of our lives and reshaped our world. Sometimes, it takes a while to reconcile this reality with the imagined future we carried with us. Sometimes, it takes a while to get used to all the new words and acronyms that have come to us with our child. Sometimes, it takes a while to re-examine labels and stereotypes that before, we would have used and believed without giving second thought to what they mean to the people they are meant to describe.
For some of us, it takes a while to welcome strangers into our world. Strangers who truly understand what you feel and, like you, will forever remember that moment which connects you: the moment, they too, were given the label of “parent of a child with special needs.” Even if you are not ready now, one day you might be. And when you are, these strangers will welcome you and open their families to you with an immediacy and unwavering support, even if you have never met before.
They know that your children are more alike than different. They are willing to share their stories with you, their triumphs, their disappointments, their worries and heartaches. But right now, they are strangers who know that it is not always easy to walk the path that you share. And even if you are fortunate enough to have family and friends standing with you, you are even luckier to have this group of people who you do not yet know. These people will form a community of support and encouragement around you and your child. They will remind you, at times when you need it most, that they are walking on that path with you. They will remind you, when you most need to hear it, of what they already know: every baby is a blessing, every child is a gift.
A little more than 28 years ago, my daughter Kimberly was born. She likes to be called Kim, but I love the name Kimberly! I had no idea what kind of journey I would be taking with this precious child when she was born. My husband and I fell in love with her the moment we saw her!
We have two other children, a son 31, and a foster daughter 21, besides Kimberly. What do I want for all of my children? HAPPINESS!! I believe that all 3 of my children have achieved that in their lives. My children all lead different lives, but they share one thing in common, they are all very happy people. I am proud of each of them for the person that each has become. They are using the gifts and talents that God has given them, and that is what we each must do in this journey called life.
Kimberly’s courage and strength to endure over 70 surgeries has been amazing. She would wave and say “bye, see you later” being wheeled into surgery. She is the wind beneath my wings. She has taught me to stop and smell the roses, she has taught me what the word patient really means…”let me explore mom, and find out things for myself…..I can do things if you let me try!
Let me be YOUR teacher! ”
We have never seen Kimberly as a person with Down Syndrome. Yes, she has that diagnosis, but she is a person, our child first, secondly comes this diagnosis. Many times in a new doctors office, we would be asked to fill out paperwork. Many times we didn’t write down that she had Down Syndrome…..why you ask….we simply forgot…..that is…until the doctor would either remind us or tell us or ask us. If we didn’t put the focus on the words Down Syndrome, maybe they wouldn’t either! We always wanted to focus on her abilities!
We have always told Kimberly that she is unique. Everyone is. We all have very special qualities about each of us. Kimberly is in many ways, like us, in many ways like other people that have Down Syndrome, but she is also very different than others that have DS. She has many talents like being able to spell words forwards and backwards. She spells words backwards faster than I can think! This is an amazing ability. Her brother while attending college brought her into his class to show how she does this. He is a very gifted person, but cannot spell backwards the way that she can. She began to read at age 4 ½, just like her brother. Her foster sister, cannot spell as well as Kimberly can to this day! Her love for people and her family is evident in every day life. Not many parents in this world are told at least once or twice a day, how much their child loves them. Kimberly without fail tells us each and every day how important we are to her and how much she loves us. She is a true blessing!
Kimberly knows that she has Down Syndrome. When she was in her early teens she watched a movie about a couple that had a new baby with Down Syndrome. She noticed right away that the baby looked similar to her. She then began to ask us many questions and still does. Her number one question to us is…why do I have Down Syndrome? We can only tell her that she is here on this earth to teach people…how to love, care and give of themselves to others as she does each day. She loves to be loved! In return she gives that away so unselfishly. The day after her birthday you can find her in her room writing thank you notes for gifts given to her. She does this without being reminded. She truly enjoys thanking people for being her in life.
Since the day Kimberly was born, we always had high expectations of her. The words, ‘she cannot do that’ simply were not in our vocabulary. I taught her brother the sounds of the alphabet at age 3-4 and decided to do the same with Kim. She was like a thirsty little sponge that just took it all in. The more I got excited the more she wanted to learn! We were very fortunate to have the blessing of a wonderful preschool-early elementary school special needs teacher that worked diligently with her on her reading, writing, spelling, and math. Without him, I think that my efforts would have been fruitless. We worked together as a team and were rewarded by the amazing abilities of Kimberly. At age 4, she was awarded “student of the month” at her elementary school. That was just the beginning of her academic achievements!
At age 20 months, Kimberly began going to an early intervention class five days a week. The first day at school she learned the sign for ball! She could say da-da and ma-ma, but had never actually used a word for something before that day. We encouraged her to learn more and more sign language as the years went by. Today, she signs to people who are deaf, signs the praise words for songs at our church, sometimes in the choir, sometimes not. She can speak clearly, but has the ability to know this second language. We were delighted one day at a restaurant, when she noticed a couple eating dinner together and signing. She asked if she could go and sign to them and we of course said yes. This couples eyes lit up when Kim went over and introduced herself in sign language to them. She found out that they were celebrating a special anniversary! I think that Kim added a special dimension to that couple’s life that day. In their world of silence, a young gal with Down Syndrome befriended them and gave of herself once again.
Last October she was given the chance to give the speech at the Buddy Walk. She was thrilled beyond imagination! She wrote her own speech and delivered it without a flaw. She has given many speeches throughout the years, one memorable one was at her Grandfathers Memorial service. He was her buddy, and she did him proud with the speech she wrote and gave about him. God has blessed her with the ability to write and speak from her heart!
When Kimberly turned 5 years old, my neighbor encouraged me to put Kimberly in the same dance class that her daughter was in, a tap-ballet class taught at a dance studio nearby. I was in awe that my neighbor would encourage me to do that. Wouldn’t she be embarrassed that my daughter was in her daughters dance class? I can only tell you that both Kimberly and I felt so much love from the dance teachers and other parents who had children at that dance studio. Kimberly still dances today. She still takes dance lessons, hip hop and jazz are her favorites!
Kimberly and I love to go shopping, have lunch out, watch the Gilmore Girls TV show together while eating popcorn and plan her dates with her boyfriend. Oh, did I forget to mention that she does have a boyfriend? They have been dating for over a year now, and talk about getting married. They talk on the phone just about every night. It is wonderful to see her beam when he calls her or when she sees him coming up the walkway! She wants to wear my wedding dress! She is my daughter and I am very proud of her!
My name is Tess and I am a very proud sister-in-law of Kimberly, she wrote a story “MY LIFE” on this website. I call her Kim and she mean so much to me that I could not even find the best word to describe it. Seven years ago, my life was so different, I lived in a different country, different lifestyle, even my Language was different and then I met Kyle, Kim’s brother who brought me over here in United States. There was never a point in time that Kim made me feel different because I am not an American, from the very first time she saw me at the airport, I got the warmest hug from her, she gave me the feeling of belonging. A feeling that I will never forget, I thought that was the best experience someone could ever have but there were a lot more, it is as a matter of fact never ending and I love every bit of it. Whenever we are over at their house or when they visit us here in Iowa, every single day, I hear her say “Thank you very much for being the best sister-in-law” I may not have tears in my eyes every time I hear those words but God knows how it melts my heart, I always tell her back that “she is the best sister-in-law in the whole world” and yes, I mean every word. I love watching Kim talk about her boyfriend and their future plans, her eyes sparkle, her face have a very special glow, it is very enlightening just watching her. I appreciate how she makes me realize How wonderful it is to be in-love. We share a lot of similar interests, for one being on the top of my list is arts and crafts, I enjoy doing this activity with her. Kim has a very gentle spirit, only if people who surrounds me has this characteristics, I certainly think there would be peace and love all the time. Not even once I felt ashamed or embarrassed that my husband’s sister has down syndrome. Some friends may ask me if I am a touch concerned of having my own baby with down syndrome, I always say No, in fact I am 7 months pregnant now , I was offered to have some tests to detect chromosome abnormality and I refused. Kim gave me a wonderful experience, if God gives me a baby who has the same condition, I will love my baby to pieces just as I love my other 2 children. I thank God everyday for giving me such wonderful family, it makes it so special having Kim as part of my life, through her I feel I have so much blessings, Kim had made me feel that no matter who I am, where I came from and whatever future God has to give me, she will always be there for me. Kim, Let me take this chance to tell you how much you mean to me, you are the best sister-in-law someone could ever have and I am so blessed God had chosen me to have you. Thank you for everything you’ve done, for the wisdom you shared and for all the love that you give to me and the entire family. God Bless you in every way. I am very proud of you. Thank you for this website who welcome Family and friends to express our heartfelt gratitude to God for giving us very special people like Kimberly who touches lives in million ways.
This is a personal story about my wife. To abduct a quote from a movie I saw once “she is my true North”. She is also a hard driving and caring woman.
We certainly didn’t anticipate a child with special needs, and we never went through the tests that most doctors encourage during pregnancy. After a long delivery process she lay exhausted and concerned. Her child had a disability that she didn’t know much about and information was always the best way to comfort her. And, unfortunately at this moment she didn’t have any significant tools to disseminate what just transpired so there we sat, part joy, but mostly uncertainty. After a bit of time I asked her why she was so concerned. She began asking questions like…How do we tell our friends? Is he going to live with us forever? I don’t know anything about Down syndrome. We quickly determined that our partnership was unified and our love toward our new boy unconditional.
I asked her recently to reflect back to the beginning and give me some insights into her thoughts. Now guys don’t take this personally, but motherhood is much more difficult than fatherhood. The social burden is on the mother. The scars are worn on the inside by mothers and the tears come in spurts throughout the child’s development. Men typically move on and don’t fret about what someone thinks about their special needs kid, or they just move out of the child’s life for good.
She said the first week was extremely traumatic for a gauntlet of reasons. Sleep deprived and endless doctor visits, lactation nurses, meeting with social workers, and every other type of professional. She became aware early after Brandon’s birth about all the potential challenges, most health related.
One troubling thought that she echoed time and again was “will he live with us for his entire life?”. My words were not enough to help her because mother’s by nature can’t allow themselves to become comfortable. Their plight is perpetual worry and anxiety about could be, should be, and will be, scenarios. As a dad, I am not consumed by these prospects.
A great deal of time has come and gone since Brandon’s birth and those long lost thoughts were not out of pity, but a feeling of sorrow for Brandon because the answers to life’s questions were yet to be known. The tears of any mother are not out of selfishness but rather, out of anxiety and fear that their child fit into society and have friends. Teresa’s concerns were genuine and heartfelt. As we watch a bouncy young boy, we both embrace all that he is and what he will become. I do my part by being the best dad and husband. I carry my share of fears…what will happen to them if something happens to me? The rock is never as strong as it appears when it comes to human imperfection…rocks do crumble.
I recognize that the burden of so many unanswered questions along with life’s simple skills which are not so easily attained by our children keep my wife up at night. It is clear that motherhood is one step below deity. For all she is and ever will become Brandon and I are grateful. I’m a father who loves his son…my wife is a mom who cares for him, a distinctly tougher job.
Although a teacher may not have experience working with a child with ds, if she/he is one to think outside the box and loves kids, they’re perfect for the job.
If your principal is in favor of inclusion, 99.99% of the battle is complete; he/she will make sure your child gets what they need.
In the beginning of the year, train the aide(s). Don’t expect the school district to do it because it’s not on their priority list. We spent a lot of time talking about behavior and transition strategies which sometimes included getting other kids to help. They loved it and he responded great to his peers. We wanted our aide in time to become more of a classroom aide instead of being velcro to his hip. In his class, there were 3 other kids that were diagnosed with special needs over the course of the year.
4. Be visible to all school staff and your child’s schoolmates even if you have a full-time job outside the home. Help support your teachers/PTA in any way possible. If you can’t work in the classroom, do prep work at home for the teacher, take on a project with the PTA or support them by purchasing supplies. It shows your support for everyone.
5. Continue to reach out to others and make play dates or host an event at your house. Many parents would like to do things with others’ but don’t have the time or energy do initiate it. I had a mother’s potluck luncheon and wedding shower at my house which was well attended for both. We have so many things in common with other parents if you just get to get to know them.
6. If you have a good aide or community learning environment in the classroom, recess playmates aren’t a problem. Brandon had so many friends during recess the aide had to break up arguments of who was going to sit next to Brandon.
7. Kids at this age still think your child with ds is just smaller than the rest. According to other mothers, their children thought Brandon was younger, not different. Some kids would comment how smart he was because he was chosen “Reader of the Month” and he was in “The Pink” group which was highest reading level in the class.
8. Parents who believe in inclusion learn a great deal from your child. For the parents who work in the classroom they will see your child’s strengths, not their disability. In fact, they’ll be your advocate for your child.
9. Ask for less but meaningful homework to support their IEP. We did most of the volume of regular homework this year, but we
worked in specific areas of need; reading comprehension, spelling and math concepts.
10. Get your husband, male friend, grandfather or uncle to go and volunteer at least 1 day during the year in the classroom. Tim did a teaching lesson on marine animals which included learning a new song. He went a couple of times in the classroom and at recess. Since they rarely see men in the classroom or at school events, the highlight for many of the kids was when “Mr. Gruber” came to teach class. They wanted him to come back for another lesson. The perception of a child seeing a “dad” or father figure made Brandon the cool kid in class(my husband has fun with the kids).
11. Figure out which is more important: inclusion for social reasons or more special education services. This year we gave up OT services for more inclusion. They knew we wanted Brandon to be in the class more than going in and out all day. As a result the resource teacher pushed in services and the speech therapist facilitated group sessions which included kids in his classroom to help to develop his social skills. Both were great!
12. Without burning out your child, get them in the community or involved in outside school activities. It is great to see the same kids from school outside of an academic setting. We see so many kids and adults in the community who went out of their way to say hi to Brandon was in a community play where met new friends from others schools. Other activities included baseball, and cub scouts.
13. Keep a daily journal to communicate with the aide/teacher(s). Ideas to include would be: interesting or eventful things that happened at school, his weekly job, his speech/resource services on the scheduled day(accountability) or any interesting topic that I could talk to him about on the way home from school. It also is a great guide to track progress. I would read their comments so we could talk immediately about his day. When the aide and I looked what he was did over the course of the year, it was exciting to see major progress. At the end of the year, we took the whole IEP team to lunch to debrief what worked, what didn’t and what we wanted to enhance for the next year(different from IEP goals). Very much like a performance review in business world.
14. Get to know every person’s name who interacts with your child on a daily basis such as: janitor(s), recess aides, PE, music, art and computer teachers, librarian, administrators and of course the IEP team. We took pictures and memorized their names. They love to be addressed by name from our kids.
15. Continue to live in both worlds. Through the special needs groups, network for additional resources to help both the teacher and to foster relationships with kids and families with special needs. The separation of abilities will come soon enough.
16. If you want to retain your child in the same grade for academic purposes, insist for that to happen. First grade is the foundational year; reading, writing and math to name a few. We figure if he can do most of what the class can do, he’ll be able to read menu’s, bus schedules and write letters to friends. Next year we’re repeating 1st grade and partial bridging 2nd grade academics in reading. We’ll monitor and reassess as the year progresses.
17. The most significant lesson I learned this year that I didn’t know in Kindergarten was the importance of a good teacher and administration. If you have one but not the other that’s okay, but it could be awesome to have both!
If we could chronicle Brandon’s year in 1st grade, it would have been an excellent teaching tool to help other inclusive environments. I wouldn’t have changed anything because he felt so empowered by his teacher. Since this was her first experience working with a child with DS, she had no preconceptions of his abilities and expected a lot from him. Our goal this year was to have Brandon sit and do all activities at his own pace and maybe have one or two friends by the end of the year. He exceeded all of the IEP and social goals that we sought at the beginning of the year. We monitored and partnered in coming up with behavior strategies(sticking his tongue out at his aides to break them into their new role and test their patience).
In a great learning environment where every child is respected, challenged and invited to do their best, it’s amazing what our children can achieve. We had very low expectations going into the year compared to the outcome based on our challenging year in Kindergarten.
Our parting comment from Brandon’s teacher was, “Hey buddy, are you ready to do this again next year? I’m excited and it will we’ll have even more fun!”
What a difference it makes to have a great teacher. We knew, she knew and Brandon knew he would, could and he did.
Next stop, repeating first grade.
I’ll tell you what I learned in another year….
Kim is a 27 year old with Downs Syndrome. After she graduated from high school, her life stalled. Without the structure of classes and regular meetings with her community of other special needs adults, she drifted into a period of inactivity and depression.
Two years ago, Kim moved from Oregon to San Jose, CA where she began living as an almost-independent adult via the Region Center. She moved into a group home with 5 other developmentally disabled
women. In this new and challenging world, she began a new life of her own creation. She began exercising with her roommates, participated in Special Olympics, and found intermittent employment through Hope Services. She lost over 50 pounds of excess weight. She began opening up to new people. Soon she was among the chattiest people at gatherings of family and friends. As her independence and self-confidence grew, she asked her case manager for work outside Hope Service! s… in the real world.
She interviewed for and won a job with J Lohr Winery, along with 5 other developmentally disabled adults. She works 30 hours a week in the San Jose warehouse where she helps label and package wine and earns enough money to help support herself. Kim is no longer on the receiving end of every government and social structure! She now contributes to pay rent. She now pays taxes. She pays for her Out Reach taxi rides to and from work. She pays her own airfare to visit her mom and sister in Oregon. She takes her nephew and niece to the movies. For the first time, she contributed to the family Thanksgiving feast by providing J Lohr wine!
Last month she got a raise!! As she discussed the possibilities for this new money with me, she mentioned that there are children in the world who do not have enough, food, medicine, and education. She wanted to help. We shared the work of The Hunger Project and ! asked her if she would like to invest. (www.thp.org) Like every responsible adult, she responded by saying that she needed more information before she could decide!! She watched an information Hunger Project DVD and decided that this is where she will put her money.
Starting with the opinion that investing $0.50 of her hourly wage was “Too cheap, Dad”, she has decided to invest $90 per month. Kim H. is now investing $1000 per year toward ending world hunger and help young girls around the world to get an education!
This commitment is a true expression of who Kim is and how much she loves children. The Hunger Project has once again helped a special woman unleash her human spirit! Kim is an extraordinary example of a woman working through her personal challenges toward a world where all children are fed, loved, and educated. She inspires me.
Silicon Valley Down Syndrome Network
SVDSN is a program of Valley Health Foundation who is a 501(c)3 non-profit organization. 2400 Clove Drive, San Jose CA 95128