Like everyone else I never thought that they would have a child with special needs. But I did. I knew that Kyler was special when he was born. He was born 3 weeks early by caesarean section, and weighed only 5 lbs. He was a clingy baby, always needing his mommy, never wanted to be left alone. When he got older, he was saying all kinds of words; book, bird, water, etc.
Then all of a sudden the words stopped. I didn’t hear the word mommy until he was almost 4. I would take him out with other moms and their kids, but I would always leave in tears. Kyler wouldn’t listen to me. I heard everything: “You need to learn to parent”, ”Why think about more kids when you can’t even be a mom to the one you have?”, “You are definitely not cut out to be a parent.” Their words hurt, but I pushed on.
When Kyler turned 3, we were told that Kyler was Oppositional Defiant Disorder. Then he turned 4 we were told that he was Attention Deficit Hyperactivity Disorder, and when he was 6 we learned that he was Pervasive Developmental Disorder – Not Otherwise Specified, basically putting him on the Autism Spectrum.
But you know what? I’m not a bad mom, God graced me a beautiful little boy, who is smart, witty, funny and incredibly sweet. Kyler has taught me tolerance, and patience. He gifts me with laughter, and intelligence. A child with special needs can teach a person so much, without the child ever knowing it. It brings people closer together, and makes a person become more aware of the world around them.
No, I never thought that I would have a child with special needs, but I can’t imagine the world without him.
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the special needs experience.
Oh, no, this cannot be happening this early! Christopher came into the world two and a half months early and weighed in at 2.7 pounds on August 22nd 1973. The doctors and nurses whisked by so fast that the waiting father and grandmother could not get an answer as to the gender of the tiny baby. Finally one doctor replied to their question, “It does not matter; it is going to die anyway.”
Well Christopher strongly disagreed, he was a fighter. Two months later he got to go home. A few weeks after he came home the visiting nurse arrived to a smoke filled house. I was young inexperienced mother and she arrived I was sterilizing the bottles, and as all the water boiled out it all melted. Thankfully as time went on I learned mothering skills.
When Christopher was around 6 years old, and other kids loved watching cartoons, his favorite TV show was the weather channel. And his favorite book was the telephone book! Christopher had learning problems in school, and other problems.
When he was 12 years old and by far the shortest child in class he started taking hormone shots just enough to help, and the shots stopped when the doctor told Christopher that the growth hormone was “doing wonderful things in his Fruit of the Looms”.
His adult height ended at 5`2″. However he was the strongest looking teenager with solid muscles from his weightlifting that he loved. He was in awe of body builders and also had no fear of anyone. He saw a rough looking burley tattooed man that towered over him and asked him, “Wow, you sure are buff, how much can you bench press?” the man answered him with a small smile on his face from the kids bravery, and possibly realizing that this was a young innocent teenager with a mental disability.
Christopher studied hard and graduated from his special education high school a year early. But then it seemed that is where his ambition stopped and his stepfather said to him, “Either you further your education or get a job, or you are out of here.” It was a tough love ultimatum.
Christopher responded with, “Then I guess I am out of here.” We assumed at first that he went for a walk.
About 3 weeks later the stepfather got a call from Arizona saying that Christopher had joined the circus and was doing a fine job, but thought he would like to know where he was. I had been worried sick over his whereabouts, and we booked a flight to go get him.
Christopher came home and told his story of hitch hiking from California and of walking allot, and climbing mountains by his fingertips to get there. This is just one story of his of how brave he is. There are so many more. As the saying goes: big things come in small packages.
“I want to audition for the news show!” Christina said to me in a tone that could not disguise the fact that she had some sort of speech impediment. “I have an idea for the show. I’d like to do special announcements for the band. I play the drums.” She continued in an excited fast paced voice, as I struggled to comprehend every word.
I gave her some papers outlining the requirements for the anchor positions on our daily news show that I was in charge of at the high school. I told her I would notify her of her scheduled audition time. I then related the story of Christina to some co-workers.
I truly did not know how I was going to handle what I anticipated to be a very sensitive situation. My co-workers advised me that although admirable she couldn’t possibly do the job. Little did I know that later I was to have a crash course in sensitivity training that would guide me to a decision that would ultimately change not only my mind, but my life.
That weekend at a family party, my two brothers were trying to have a conversation. It was becoming quite heated because of the fact that one brother, John, has only ten percent hearing left, as a result of the explosion of the bombs from his days as a Green Beret in Vietnam. John is very special to me and has been through a lot in his lifetime.
John was trying very hard to hear his brother Larry above the music and other people talking. He kept asking Larry to repeat himself. Larry got agitated and made some comments about John not being able to hear.
John got up from the table and went outside. I went after him and found him standing by a small creek rolling some seeds around in his hand that he had just pulled off a bush. He was lost in deep thought. Are you all right? I asked. “I’m tired of everyone telling me that I can’t hear every day of my life. I thought my own family would be a little more sensitive.”
“It`s only Larry, don’t worry about him”, I said. “I’m not mad at Larry. I am mad at myself for being like this” he said sadly. I reassured him he had been through a lot, and that it wasn’t his fault. We didn’t say another word, but just walked back into the building and rejoined the party.
He has accomplished many things in his career and life and I look up to him as a strong role model. He has never once complained about any hardship life has dealt him. So, I felt that we had shared a special moment that afternoon and that a far greater power was teaching me something I needed to hear.
The next day Christina was scheduled to audition, but she never came in. The crew and I finished with the other students who had auditioned and turned the cameras and other equipment off. As I walked out of the studio I saw Christina.
“Why didn’t you come in for your audition?” I asked. She told me she never got my e-mails. I told her I felt really bad that the auditions were over but she’d have to come back next week.
She asked if she could just sit in front of the camera and see how it felt. “Sure” I said. As I watched, she sat there beaming. Then she said “I wish I could do it now”. “OK,” I said impulsively, “Let’s do it!”
After about four takes of reading from the papers that I had given to all the students for their auditions, she looked at me and said, “I’ll never make it, will I?” All of a sudden I felt an urge to get to know this ninth grader better. We started talking and I found out that Christina like my brother John had overcome many obstacles in her life.
She was born with a hearing impairment and she could only hear certain levels. She compensated for the rest by lip-reading. Had it not been for her working all summer with a speech therapist she wouldn’t have had the courage to try this. I was in awe of this girl. She had so much confidence, pride, and courage; I just knew that somehow I had to get her on the show.
I told Christina that I didn’t want to sound mean, but some students can be cruel and I wanted her to realize what she might be setting herself up for. We talked a while longer and after some consideration I told Christina that I would try out her original suggestion of doing a special announcement for the band.
I asked if she would take a few minutes and write a synopsis about the homecoming parade that the band had participated in that past weekend. I told her that I noticed that when she spoke to me in her own words I understood her better than when she was reading from the papers I had given her. I suggested that she practice it for a while until she felt comfortable. I told her “You`ll do fine.”
I gave her some time to write her story and to memorize it and then I came back to tape her. She had asked if she could get her drumsticks and incorporate them into her audition. Christina looked directly at the camera and performed flawlessly. She took her drumsticks and did a drum roll on the desk and flipped the drums at the camera. She said her closing statement. She was fantastic! I scheduled her for the following Monday morning show.
That weekend the band was going to play at Giant’s stadium. I told Christina to write her story, practice it until she really felt confident in saying it, get it approved by the principal and I’d put her on the show. She was so excited. She asked if that meant that she had the job. I had previously shared my concerns about putting Christina on the air with the principal. We had pretty much decided that it would be difficult for her to do the show.
I called him after her audition and told him that I had decided to put her on the show. I briefly explained why I had come to my decision and I also mentioned that it was time to challenge our school’s theme, which is “Mutual Respect.” I told him how impressive she was and that he could see for himself because she was in the office waiting to speak to him. As I expected, she won him over.
On Monday, the principal escorted her to the studio and as he walked away just before airtime, he gave Christina thumbs up sign. Christina did her special announcement live throughout the school. The students were so attentive.
That day is one that will stay with me forever. The other members of the news crew were so supportive of Christina and cheered her on with smiles and thumbs up. I had purposely not told them anything about Christina before hand, only that a member of the band was doing a special announcement. I was pleasingly surprised by their support and their reaction to her.
That week was filled with positive comments from staff and administrators, telling me what a nice thing I had done. My response was that I hadn’t done anything Christina deserved all the credit.
Shortly after Christina’s debut, she came to see me with a chocolate cornucopia filled with cookies and candy. She told me that it was a thank you from her mother for allowing her to be on the show. I was touched beyond words. As I thanked her we hugged and tears welled up. In that moment I felt that my whole career in education had been worthwhile.
In the back of my mind, however, I knew that one other person deserved a hug – my brother, Johnny. He was the one who opened my eyes to Christina’s predicament. Christina is now our official anchor for the marching band and everyone looks forward to her next announcement. As for me, I can hear a little more clearly now.
By Angelina S. Wicks
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
The morning dew, clung to the grass, as the sun began to rise, a little girl stretched with a yawn, and rubbed her weary eyes. A day just like all others yet she managed still to smile. She peered out through her window, and dreamed a little while. This girl, like you was special, unique in her own way, her legs just didn’t have the strength, to run and jump and play.
She prayed each night that they would heal, so she too could share the fun. She wanted to giggle and laugh with all her friends beneath the warm sun. She longed to feel the soft cool grass, the sand between her toes, to walk among the falling leaves, and the cold and crisp snow.
She’d watch the others in their favorite game, in stance to start a race, all crouched down in a single line, such excitement on their face. She’d eagerly shout “Ready. Set. Go”, and they’d take off with a flash. “Oh”, she thought, “how glad I’d be, even if I came in last.”
And then one new and precious dawn, unlike the ones before, she peered out through her window, and rubbed her eyes some more. She thought she MUST be fast asleep, for never had she seen, anything quite as beautiful, not even in her dreams.
There stood a chestnut horse with a golden mane, with legs so large and strong. “Surprise!” she heard her parents shout. “He’s yours. He is not perfect, he’s blind and cannot see. He’ll trust in you to guide him, and together you’ll run free.”
They asked the girl to come and meet him, and they lifted her atop, this horse with a golden mane, and never again would another day, feel quite the same again. The answer to her prayers, for with her sight and his strong legs they’d be a perfect pair each day She practiced hard and learned to ride, this big and noble steed, and knew that she could do all things, if only she believed.
She brushed his coat until it shined, and whispered in his ear, “I never believed in miracles, before they brought you here.”
And then one day along came her friends. She joined them in their game. Her hands held tightly on to the reigns. Ready. Set. Go.
She gave her friends a running start, a fair and distant lead, then like a flash, she bounded forth, with her blind trusting steed. The wind rushed against her hair and she grinned from ear to ear, just then she looked ahead to see, the finish line drawing near. She felt the spirit in this horse, run hard with all his might, for he now gave her legs to run, and she gave him his sight.
The two longing hearts now soared. The girl prayed for two strong legs, and God gave her four. Together we can do all things, if we only just believe, just as this girl who won the race, with her blind but noble steed.
By Lisa J Schlitt
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
God, are you there? Are you listening? Why us? That’s what I wanted to know, almost twenty-three years ago. I didn’t ask these questions twenty-four years ago when my daughter Danielle was born. Why would I? She had ten fingers, ten toes, was beautiful and was perfectly healthy.
My son, Keith was born thirteen months later and also had ten fingers, ten toes, was beautiful and had Down Syndrome. What happened? Why would God do this to us, to him, to his sister, to our family? I didn’t have the answers then.
I did know my husband and I had two beautiful children and we were very young ourselves. I was twenty-three and Ronnie was twenty-one. It was hard enough being married, let alone having two babies under thirteen months old. I remember being so scared. I also remember praying that I was going to wake up from this terrible nightmare. I did wake up, but the nightmare was still there, day after day. Finally I realized that I had better get strong and work for what the best for our family.
Danielle was such a good baby and helped me allot. She grew up very fast. I now realize that God gave us Keith because He knew we could handle it and that we would do our very best. I also know that God gave us Danielle first to pave the way for Keith. God and Keith both taught us all how to be accepting and loving at any cost.
I learned how to be a good mother to Danielle, and she taught me so much about her brother through all the good and bad times. I thought that Keith wouldn’t get to do the things she did in school, but he did, and in high school he was the bomb, she made sure of that.
Danielle has now become a Special Education Teacher and is doing a great job. When she got married almost two years ago, Keith and her dad walked her down the aisle, well, actually danced and laughed down the aisle.
When Danielle and her husband Trey announced to her dad and I that we are going to be grandparents in May 2006, to a baby girl, she also announced to her brother that he would be ” the world’s greatest uncle”.
I have learned so much from my children, but I have also learned that God did listen. He was listening before Danielle was born, and He was listening before Keith was born. He was always listening and still is. He gave me two beautiful and special children because He knew that we could handle anything with Him by our side.
So, yes, God is listening always and he gave us Keith and Danielle because these are the children we were meant to have, and we wouldn’t have it any other way! Sometimes there is no reason or understanding. All you can do is trust God.
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.
In May, 2004, my husband and I were in Pretoria, South Africa, visiting our daughter and son-in-law, their toddler, Grace, and newborn Sarah. We met Sarah in the Neonatal Intensive Care Unit, where she lay attached to monitors.
Born with three holes in her heart, the defect had been detected before birth. Because this problem is a marker for Down Syndrome, more tests were done. The baby did, indeed, have DS. Although shaken by the diagnosis, her parents immediately established a positive attitude for family and friends by declaring, “The baby is still a gift; just in different wrapping.”
We all eagerly awaited the birth of the little person we already loved. Sarah went home at three-weeks-old, with open heart surgery looming in the near future. Lacking the strength to breast or bottle feed, she took formula and medication through a tube. A monitor watched her oxygen level; if it dropped too low, a buzzer sounded. She did well, and never “turned blue,” as we’d been told she might.
Admiration spilled over when I watched my daughter care for this fragile infant. The hospital sisters had taught Mom how to change the feeding tube, and she did it with speed and precision.
Within a week, we relaxed a bit and began treating Sarah like any newborn. She was a baby first, an invalid second. At three months, the cardiologist determined that time was of the essence; Sarah must have surgery. The surgery on her heart, the size of a walnut, went well and the organ began functioning as it should.
But a day later one lung collapsed, and doctors began a treatment that they warned might not be successful. We collectively held our breath and prayed. Sarah rallied, but we later learned that she almost didn’t survive. An infection kept her hospitalized a few days longer, but after three weeks in intensive care she went home, where she learned to suck a bottle and began life as an active baby.
Now back in this country, Sarah participates in physical therapy and speech therapy and has learned sign language. Through this early intervention, she has met all the goals set by her therapists and functions within the range of “typical” children in her age group.
Emily Perl Kingsley explained in an essay titled “Welcome To Holland” that when you become pregnant it’s like planning a trip to Italy, a place you dreamed of going. But when your baby is born with Down syndrome you feel as if something has gone wrong. You’re in Holland instead. After a while, she says, you learn that Holland is not a horrible place; it’s just different. In fact, it has much to offer. Still, all your friends have been to Italy, and always brag about what a wonderful time they had there.
Kingsley concluded: “For the rest of your life, you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’ And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a significant loss. But, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”
I’ve been to Italy and Holland. None of their treasures is as charming and captivating as Sarah. We don’t know what challenges lie ahead for Sarah, but we’re confident she has the strength and determination to excel in whatever she tries. Each advance she makes is a significant blessing.
Her special gift is a dazzling smile, which comes easily. Her message, I believe, is that we all need to lighten up and wear a happy face. And we do, each time her impish grin and sparkling blue eyes remind us to do that.
By Madonna Dries
Jesus Rios came into our lives when we were in the 7th grade. At the time, my friends and I were eating lunch on our usual table and spot in the lunch area. Jesus came down to eat lunch with us with a huge smile on his face saying, “I’m Jesus, Jesus Rios.”
We welcomed him with open arms into our lunch area, but we were a little surprised. We had never had anyone named Jesus, or anyone with Down Syndrome, come to eat lunch with us. I’m not sure if we had ever even talked to anyone with special needs before.
Jesus soon became just like any other person in our group. He loved to smile, make jokes, and tease just like anyone else would. Jesus loved to show off for all of us girls. He loved to have us all sit around while he put on a show doing cartwheels and dancing.
Jesus gave each of us a name of our own because he could never remember our names. My friend Jazmon became “Crazy Hair.” Our whole group was nicknamed “Pretty Girls” or “His Girlfriends.” The only person Jesus could ever remember by name was Gracie. She was always the heart and soul of the group and it wasn’t surprising that he only remembered her.
Jesus used to blame anything that went wrong on her. Gracie was always the patient one and didn’t mind to help him figure out a problem that was never her fault. I recall one time when he lost his pictures. He marched right up to Gracie and started yelling and pointing his finger at her and saying that she stole his pictures. Gracie very calmly took Jesus to find his pictures that mysteriously showed up at the bottom of his backpack.
My friend Malia and I invited Jesus to our double birthday party. Jesus was so excited, he could hardly contain himself. Everyday up to the party, he would tell everyone that Rebecca invited him to a party and that they weren’t invited. (Yes, he finally learned my name).
When his dad dropped him off for the party he stayed for awhile to give us instructions on what Jesus could and couldn’t eat. We would find Jesus sneaking all the candy he wasn’t supposed to eat anyways. Malia brought him outside and taught him how to hula dance. He probably had it down better than the rest of us. A few girls at the party put on a play with Jesus. Jesus really didn’t get what they were doing so he just ran around the yard doing cartwheels and dancing to his own beat. Jesus was the life of the party.
Jesus joined our group to the 8th grade dance. He looked very handsome with his bow tie and suspenders. He danced each of the slow songs with a different girl from our group. Jesus made each dance, party, and lunchtime more memorable than any I have ever had. Our times together were not always fun and dandy. We constantly had to defend Jesus and get him out of fights.
A certain group of boys never seemed to get off his back. None of us noticed that they constantly picked on him until they did right in front of us. (Not a smart move on their part) We defended poor Jesus until each of us had lost our voice and gotten into trouble for yelling. We were all angry until we looked at Jesus’ smiling face showing us that he appreciated everything we had just done.
From that day forward, no one dared to mess with Jesus. Jesus taught our whole group how to love and respect others even if they are a bit different. We would have never guessed that Jesus could be so much fun and just as crazy as the rest of us. He was a great person to talk to, and some of most meaningful conversations at that age were with Jesus.
We all reached high school together seeing each other briefly in the halls. But just like many wonderful friendships, our group fell apart. When I see Jesus in one of his classrooms, he always comes right out and says proudly, “This is my girlfriend.” And I proudly say back, “Yes I am!”
Thank you Jesus, you changed all of us for the better.
It seemed like my little sister was always happy. She only cried when Mother or I wouldn’t let it be her way. It was cute and made me happy inside. But my sister Vada wasn’t like my other sister’s. Due to complication’s at birth she was mentally handicapped. I didn’t understand when I was younger. It didn’t seem to compute with me that my 2 year old little sister was handicapped. Over the years I did understand though, even if it wasn’t easy.
I was jealous often of her. My Mom was always telling me “Your sister has special needs Hun, you know that.” Yes of course I knew that, but didn’t want to accept it, and everything that it meant. I wanted attention too. I got wonderful grades and did great things and here this girl who could barely speak properly, didn’t seem to understand barely anything, and she was the star of the show. It didn’t seem fair. I was so childish. Now when I think back about how I felt I’m asking myself, “Why was I so horrible?”
Vada would always be looked at differently. People would always treat her specially because she was special. I think I tried excluding her mainly when I was pushed on to take care of her. Mom and my Step-father needed my help with her, so I was stuck with Vada. I cooked for her, played with her, got her dressed, and put her on the bus to school. She was always with me, and I was with her.
Then one summer day I finally understood her. Her and I were playing outside with my friends. She couldn’t keep up with us, and everyone was getting aggravated that I had brought her along.
“Why did you bring that retard for?” they asked me. For the first time I was angry someone had said that. I look at Vada sadly and then back to them with a scowl. “She’s not a retard! She’s my sister and my best friend, and you will never understand her the way I do!”
That night when I put her to sleep, Vada smiled at me and asked, “Jewel love me?” I nodded and inside wanted to cry. “Of course, I will always love you, and always have.” Vada was my angel, my little sister who meant the world to me.
Now Vada and I are still close. Many times she annoys me, as little sisters often do, when I’m with my friends, or my guy, but I always take time to spend with her and let her know I love her.
I guess it just took a while for me to understand that just because she was different, didn’t make her wrong. Vada wasn’t a mistake, or something not meant to be: she was my sister. I wouldn’t change that for anything.
My husband, James, and I have been foster parents for the past four years. The touching moments happen often in the course of caring for neglected or abused children. Sometimes it just breaks my heart to see not only the physical suffering of these children but the silent, mental suffering no sees unless they spend time with each child. Currently we have two children in our care, David, age 4, and his sister, Susan, age 3.
Every time these two little ones return from a parental visit they are sad and tend to act out for a day or two. At the breakfast table after such a visit David appeared to be sad or maybe not feeling well. His head was down and his favorite breakfast of biscuits and gravy sat before him untouched. One hand covered his forehead and eyes so that we couldn’t determine whether he was actually sick or upset.
James, noticed and asked, “Say, Buddy, aren’t you hungry this morning?” David remained hidden and silent for a moment. Then in the broken language of his youth and speech impairment, he replied so softly it was difficult to decipher. “Hair.” Puzzled, my husband asked him, “Is there a hair on your food? Just brush it away, Buddy, and eat up!” “Face,” was David’s reply. James and I exchanged puzzled glances. After a while you get to know the intricate workings of a child’s mind.
From an inner intuition I suddenly knew exactly what he was saying…the reason he was sad and unable to eat. “David, did your mother hold you on her lap yesterday and give you lots of hugs and kisses?” I asked. He dropped the hand from his lowered head, looked up at me with pools of unshed tears filling his eyes, lower lip quivering and said, “Momma’s hair. On my face…” As he spoke his small little hand brushed the side of his face ever so gently.
My heart nearly broke. Barely holding back tears of my own it was all I could do to speak as I opened my arms. “Come here, precious, and let me hold you for a minute.” The sobs were released at last as he jumped from his chair and ran around the table and into my arms. I engulfed him in a fierce hug as I lifted him onto my lap. For long moments I simply rocked him and whispered in his ear, “You are so special…we love you…God loves you too…so special…” Until the tears were spent.
But the pain of this child will never completely go away. We can love him and try to reassure him that he matters…that he is special…but what he really needs and craves so badly is not ours to give. All he wants is to be with his mother. Oh that she could know what she is doing to her precious son and daughter. Would she try harder to get her act together and gain back custody of her children?
Every child deserves a mother. This is my wish and daily prayer…not only for this particular little boy…but for all the special children who remember the simple touch of a mother’s hair on his cheek.
The day I had waited nine months for finally arrived. My beautiful, perfect baby boy was here. Three years later my beautiful daughter arrived. Like every new parent, I had concerns. They were quickly put to rest by our pediatrician. By the time Emily was born, I was more relaxed. Many of my friends were jealous. I had gotten perfect children. My children slept while my friends’ children stayed awake.
I wasn’t experiencing the “terrible twos” and “horrible threes” my friends were experiencing. I gleamed with pride at the two gifts I had been given. The seemingly perfect reality I was experiencing was simply a facade of which even I wasn’t aware.
My son, Jacob had been receiving early intervention services at our home because of what we believed was a simple speech delay due to many ear infections. When he turned three, we were given the opportunity to send him to a full day speech and language school. Within months, Jacob was beginning to talk.
At the same time, our Emily was growing more beautiful with each passing day. She had a glowing personality. People everywhere were drawn to her smile and she warmed the hearts of all who met her. She wasn’t however, meeting some necessary milestones as quickly as other children her age. The pediatrician reassured us that Emily was merely “low tone” and that she would catch up eventually.
Months passed and Emily became more frustrated. When she was eleven months old I called early intervention services. She was evaluated and it was determined that physical and occupational therapies were required. Therapists were assigned and Emily quickly began meeting milestones. We cheered her on as the frustration lessened.
Our perfect world had been restored. Once again, however, perfection would be shattered by reality. We began to notice certain behaviors in our son had persisted despite his new found ability to communicate his needs. My husband and I realized that this needed further investigation.
Jacob would be entering kindergarten and we would have decisions to make. I took Jacob to a neurologist expecting him to laugh and say, “He’s a kid. This is what they do.” I sat in the office on that April afternoon, my stomach churning. I finally met the doctor, who instead of confirming my hopes, said, “Jacob is Autistic,” I was speechless. Questions loomed.
Autism was one of my worst fears. To me, Autism meant a child who could not connect with others, a child who did not want to be touched, and a child who would spend his adult life in a group home or institutionalized. Through tears, I tried to listen to the prognosis.
“Jacob could not be Autistic”, I thought. He loved to be held and hugged. Jacob was too smart for that-he already recognized all the letters of the alphabet! I didn’t understand. There were behaviors, the doctor said, which clearly pointed to Autism: the repetitive movements, the echolalia, the inability to make eye contact. Yes, this child was Autistic and would need a lot of work if he was to have any semblance of normalcy.
After Jacob’s diagnosis, I began to worry about Emily. I worried that some day we would get bad news about her too. She continued to improve and unlike her brother, she was very social. Fear subsided and we breathed a sigh of relief that life was once again returning to normal.
When Emily began to talk, however, we noticed that her speech patterns sounded muddled and she was difficult to understand. Once again, the wheels of fear turned in my head. Why was she having so much trouble? I felt an urging to find out, but chose to push the fear and doubts to the back of my mind.
I had been speaking with a family friend whose daughter has Down Syndrome. We discussed Emily’s therapies and she urged me to rule out bigger problems and not just treat the symptoms. I had felt this way too, but it’s unnerving to have someone else say it and not know your thoughts. Emily needed to see a specialist. We went back to the neurologist.
After looking at Emily, he said he felt it wasn’t anything terrible, just something that a simple blood test would reveal and could be “cured.” Much relieved, I took Emily home, thankful we had been spared. It took three weeks for the blood tests to come back. I went back to the neurologist’s office confident that all was well, while my son went to school and my husband went to work. I promised to call as soon as I was finished.
Finally it was our turn to see the doctor. He looked over Emily’s charts and said, “Ok, today we are here to discuss how to handle Emily’s Down Syndrome.”
“Emily has Down Syndrome?!” I asked in horror and disbelief.
Confused, the doctor looked back at the charts and quickly realized he hadn’t given me the bad news before because I’d had to cancel the previous appointment. Apologizing, he retraced his steps and explained to me that Emily had a rare form of Down Syndrome. This is why it had not been detected in my prenatal tests. Here I was, sitting in the neurologist’s office listening as he told me I didn’t have a normal child…..for the second time!
Hysterical and shaking, I left the neurologist’s office and called my husband. Now it seemed hopeless. Both of our “perfect” children would face insurmountable challenges that we could not take away. Over the next few days I cried. I begged God to inflict this upon me and spare my children. I begged Him to help me to understand why this tragedy had befallen our family.
Then, from out of deep depression and confusion came a soft voice in my heart urging me to do something. I realized that sulking and feeling depressed wasn’t going to help Jacob and Emily. I got to work. Using my knowledge as a teacher, I made endless phone calls to anyone I could think of.
Appointments with schools were made. Additional evaluations were scheduled. It took less than three weeks to place Emily in a half day preschool program. A process that should have taken months took a few weeks. Everyone wondered, how did we get it done so quickly? I had been through it before.
Emily’s diagnosis did more than help her. It helped my husband and me. We had been financially struggling and had been wondering all summer how we were going to pay the costly daycare Emily was enrolled in. With the diagnosis, Emily became eligible to attend a preschool program five mornings a week free of charge and a family friend became available to watch her in the afternoon.
The blessings have been endless. We are watching them learn and grow at their own pace. We realize that it won’t be easy, but we are prepared. We were especially excited to discover that Jacob’s prognosis has improved and with the right help he should be able to grow up and be like everyone else.
Happiness shines through Emily and it is impossible to feel anything but joy in her presence. Her ability to light up the world outshines her disability and all who meet her are amazed by her warmth and compassion.
Truly, a lesson has been learned. God gives us not what we think is best, but what He believes we need. He knew I needed them to teach me about love and acceptance. He knew that I had strength I thought was impossible. He knew that I was exactly the mother these two special babies needed. I am honored to know that I have been chosen to do His work.
By Susan Friedenburg