More than Down Syndrome: A Parents View
by Joan E. Guthrie Medlen
It must have been in a different life…when my greatest concern was "Down syndrome." In those days, I’d find Andy in his room re-enacting "Beauty and the Beast" with rubber figures in his dollhouse. Andy gave "Beast" a particularly throaty voice. We saw pretend play; we saw personality in his play. He imitated his brother's every move, which Ryan found endearing. Together they investigated the corners of the house, gleefully chased me with their cars, or ran to the window to see the fire truck go by. Our lives looked like what you expect from a family of a child with Down syndrome. But it must have been a different life because it bears no resemblance to our lives with Andy today.
Today, at age 10, an unexpected or unfamiliar visitor to our home sends Andy running to hide in his room until he decides to investigate them. Today I must say "look at me" a hundred times to ensure he notices and listens to me. Today I see him watch other children and want to play with them, yet be overwhelmed or scared. This means he begins to "flap," and the other children are equally afraid of him. Friendships require a lot of work, training, and facilitation by the adults in Andy’s life. At the end of today I will gather up the jump ropes and clackers that are inseparable from Andy and put them in the "dangly things" box for him to earn access to again tomorrow by working through a specific task with me. Today I know the isolation of being the mother of a child who is different from his peers with Down syndrome.
And yet, today is better than yesterday. "Yesterday," somewhere around age 5-7, he seemed to magically "forget" nearly everything: potty training, eating with utensils, his signs, word approximations, all of it. He was afraid of everyone and everything. So intensely afraid, he lashed out at us with no warning and for no reason we could understand, hitting, biting, with wild eyes and a beat-red face. It seemed Andy never slept more than three hours a night. He spent his nights dangling socks and jump ropes endlessly while I sat nearby waiting for the right time to suggest we try to go to bed one more time. And yesterday I had trouble finding someone to listen to my despair and questions about his developmental regression. Yes, it must have been a different life, a different child….
And so goes the story of our journey, one that leads to a dual diagnosis: Down syndrome and autistic spectrum disorder. Discovering the reason for Andy's developmental history and giving it a name has been a long and very difficult journey. It is full of controversy, arguments, heartache, and unending questions.
It began similar to many parents of children with Down syndrome. During my pregnancy we were informed I had a low AFP value, which led to an ultrasound, and for us, nothing more. Somehow in my heart I already knew Andy had Down syndrome. The day he was born and the extra chromosome confirmed, I did what I seem to do best: ask questions and investigate. This intense, never-ending inquiry, coupled with the belief that my children deserve my best effort serves me well. I'm not sure where it came from except perhaps from my training as dietitian--it's always better to say, "I don't know, but I'll go find out." I didn't know anything about Down syndrome and I was determined to find out.
I read articles in the medical library at work and saved money to buy books about Down syndrome. I asked our Early Intervention Home Consultant about teaching Andy sign language when he was about 7 months old. She didn't know what to think. Like me, she headed to her best resources: the team speech language pathologist and recent literature on the topic. The speech language pathologist felt that we should begin with concrete objects instead: a nipple to say he wants a bottle, a piece of a toy to ask for it, and so on. She felt that he didn't have the prerequisite skills for sign language. But Andy didn't like using objects. So, our EI Consultant and I chose some first signs and gave it our best shot on our own. He learned to sign "more" almost immediately. Information is powerful. I kept reading, asking questions and challenging.
During this time, my two boys were inseparable. Andy loved his big brother. He followed him everywhere even before he could walk. He dressed like him, he wanted to sleep with him, they played together with cars, on the slip-n-slide, and so on. There were times when people would stare at us or we would feel the "usual" pains of having a child with a disability, but for the most part, I had grown to accept this twist to my family. We had fun.
I can no longer pinpoint when things began to change. After so many years it is hard to tell the difference between the change from his being with me at home all day to attending a preschool environment and the possible signs of autism. In preschool, though he enjoyed it and most of the staff was positive, I was asked for the first time to demonstrate Andy's ability to make a choice. I insisted the key was in how things were presented. If I had known how many times I would have this same conversation about "choosing," I would have videotaped it. After letting the special education consultant pick two toys for Andy to choose between, I interrupted his play and asked him to come talk with me for a minute. We sat on the floor cross-legged with a connection I've always known with him. I asked him to scoot closer and told him we needed to show his teacher how he likes to choose his toys. I showed him both toys and asked him which one he wanted to play with. He chose one, we played for a few minutes and he wanted to leave. I told him it was fine he wanted to be all done, but he needed to say "good bye" to the toy first. "Bah," he said, and he was off to greater prospects. With that demonstration, I returned to the consultant expecting to hear validation that Andy could, afterall, make a choice. Instead she asked, "Is that about the length of time you would expect him to play with that toy?" Always a challenge, always a test, always a question, but never belief. I felt defeated and insulted, but I still believed in my son.
I began to wonder why Andy wasn't talking. One of the assistants in his classroom said he seemed to do well with another student's picture book. I couldn't find anything written about children with Down syndrome using symbols. He increasingly didn't fit my image of a "typical" kid with Down syndrome. When I shared my concerns with other parents they replied, "There is no 'typical' Down syndrome." It must be my imagination, I decided. Years later, I looked through the notes I kept and found multiple references to a regression in his skills. I attributed this to teaching strategy and environment, but I quietly wondered if there was more.
Our induction to school-aged services was a rough one. Andy had not continued with his acquisition of sign language despite our work at home and with a private speech pathologist. He used about 10 sign approximations (though he understood many more) and only a few word approximations. Communication was a problem and his struggles in this area were seen as a reason not to be included in a general education classroom. I received my label, "mother in denial."
During this year Andy began to play excessively, almost obsessively with strings, ropes, and other "dangly things." To me, this was a sign that we really needed to work on finding a way for him to communicate. He also didn't seem to enjoy being with the other children like I expected. He preferred to watch and was careful in his attempts to join in. He delighted in watching his classmates perform skits and puppet shows, but would resist participating. His play at home lacked the imagination we had seen in the past: he no longer created his own version of "Beauty and the Beast" in his dollhouse or imitated what we did around the house. But I was so mired in philosophical warfare about his placement, I missed these subtleties in his development. The focus shifted from advocating for the best strategies for teaching Andy to learning the laws surrounding his rights to a Free and Appropriate Education--and reacting to blatant violations of those rights. I often wonder how different things would be if my energies weren't distracted by these concerns.
Even so, we moved him to a different school, in a different neighborhood, where he was to spend part of his day in a general education classroom and part of his day in a special education classroom "remediating" some of his skills. For us, this was a disaster. At the time I was certain it was solely because of the incompetence of the teacher and her inability to control a classroom. These troubles were horrific for Andy, who couldn't come home and tattle on everyone to his parents. He was poked, pushed, prodded, and teased by other children. We sent a copy of the photo cards he used at home to communicate to school with him. They were left in a closet. In this classroom, within the first three months of school, my son lost virtually every skill I had cherished: no more trip-training, no more word approximations, no more signing, no more happy child. He began biting us and reacting violently for no apparent reason. His eyes would grow wild and his face red with combined fear and anger. He would lash out at me with no warning. I was covered in dozens of bite marks. This was not "typical" Down syndrome. Where did my child go? He was 6 years old.
Today I believe this is when Andy's autism fully entered our lives, even though we didn't recognize it. Yes, the classroom was unacceptable, but his reaction and the regression are, I think, primarily due to autism. I've heard parents and professionals say that with the onset of autism, it's a downward spiral until you hit bottom. Once there, there is nowhere to go but forward and up. I don't think Andy's "low" needed to be quite so devastating.
We moved Andy mid-year into a life skills classroom where the teacher wanted him. She had experience with children living the hell Andy was in and believes in and values all of them. In two weeks, the biting decreased dramatically, he was trip-trained again, but he still dangled things--anything--incessantly.
- Over time, we noticed Andy doing other things that were puzzling. Things that were not what I equated with Down syndrome:
- He liked being alone. He didn't seem to miss us if we didn't interact with him. He was content, though not productive.
- He seemed lost to us in his world of his own filled with dangling and videos.
- He seemed interested in other children, but scared of them.
- He was afraid of everyone. When we had visitors or family, he would run to his room and slam the door.
- He had no speech, nor did he have communicative intent.
- He didn't know how to "play." He seemed to forget the imaginary games he played and never imitated anymore.
He would be overcome by certain situations, such as a large room (like a gym) and either "belly flap" (lay down on his stomach, arch his back, and flap his arms and legs) or run around in circles flapping is arms.
Various evaluations mentioned his "scattered skills" instead of a global developmental delay. He seemed to learn step 3 before steps 1 or 2. He seemed to need very little sleep. He would sleep for 3 or 4 hours and then go to school. I was exhausted and dreaded the night. What did all this mean? His teachers, therapists and I would talk about it often. In those discussions I would hear questions and comments about his scattered skills and other things, but no solutions.
When I have questions, I begin that same process that started when he was born: I question and investigate. I believe Andy deserves more than an "adequate" education or support. He deserves best practices in all disciplines so he can be successful. Every child does.
Any time there are concerns about a child's development, it is best to begin by looking at possible medical concerns. Andy is very healthy really. He did not have any complications at birth. He had pneumonia when he was young followed by recurrent ear infections, middle ear fluid, and eventual tubes. He now has "permanent" tubes that will need to be removed soon. His hearing is "low normal," his vision is fine, and though he will get every virus traveling through the air in a classroom, he is generally well.
Having ruled out medical concerns my focus hovered intensely around finding a way for Andy to communicate. I believe that behavior is communication and that odd behaviors are Andy's way of telling me things. Discussions with the speech pathologist at the school were frustrating. I was told Andy didn't have the prerequisite skills, he didn't have communicative intent, and he didn't know how to choose. It felt like a recurring nightmare. At home, though, Andy did make choices using a Yak Bak (a hand-held message recorder) and pictures. I focussed on step three where we were seeing success and everyone else was looking at steps one and two. I don’t' believe this happens because people don’t' want to teach Andy, but because they want an ordered progression. It is true that all the steps serve a purpose. But to engage him you must capture his interest. And what Andy wanted was some control over his life.
Reading all I could understand about Augmentative and Alternative Communication (AAC), discussing it with a friend, and armed with BoardMaker™, a computer program to generate Picture Communication Symbols, I dove in with both feet. Before I knew what happened, I was constantly running to the kitchen to answer my son's demands on his voice output device. At first, he pushed any button just to see me run. What power! "Golly, I push this button and everyone comes running. How funny. Let's see how many times I can make them do it." I didn't get much support for using this method in the classroom, but our private speech pathologist, worked along with me devising games and methods that helped us see what Andy might like to say.
And you know what? He played games. He played pretend games with Bert by activating buttons that said what Bert wanted to do (eat, drink, or read a book) and together they would make Bert do what he commanded. We were going forward again. The key was not focussing on steps one and two, but meeting him at step three, where he got what he was interested in, then reaching back to pick up steps one and two.
Understanding what makes Andy tick is like a drug to me. It's addictive. Success leaves me wanting even more. Having nothing more tangible to go on than Down syndrome, I read Pat Oelwein's book, Teaching Reading to Children with Down Syndrome (Woodbine House, 1995) again. Using my computer and photographs, I began making books for Andy. They all had themes: "I See..," "I Like…," and "Who Is…." Andy loved them and was drawn to the pictures. But I soon realized he was endlessly looking at the pictures. It became another way for him to leave our world for his. I was stuck. He still spent most of his life with his jump ropes, staring at the photos in his books, and flicking any picture cards we tried to use.
Frustrated and unable to find a way in to my son's world of dangly things, I began to look through journals, IEPs, photo albums, and videotapes for ideas. One night I pulled out an old video of Ryan and Andy playing from. Andy was not yet walking. He was two-years-old, and Ryan 5. I was mesmerized by the joy of their play. They chased an electric car, danced to music, and ran to the window to wave goodbye as their Dad left for work. There sat Andy, being hugged and smothered by his brother, beaming into my camera. Looking directly at me. I slipped in a tape of Andy working with his voice output device the week before at a speech session 7 years later. I was stunned. They did not resemble the same child; his brightness was gone. He looked up at the camera that invaded the therapy session, but there was no real connection with the person behind it. He didn't look at me. My heart sank. I cried. That toddler will never be back.
I shared the tapes with a few friends. One friend asked me in a way I couldn't misunderstand, "Have you considered autism? Have you considered having a full-blown evaluation done? It'd be hard, but I think you owe it to Andy." It wasn't the first time he had mentioned it, but it was the first time I heard him. I didn't want to consider it, but I had no other choice.
Over the years I have made some connections that I hoped would be helpful. I e-mailed a co-director of the Down Syndrome Medical Interest Group, of which I am a member. I explained to him that I wanted to investigate the possibility of Andy having autism, but that I was unwilling to go to "just anyone" for this evaluation. There is no Down Syndrome Clinic in my state, nor is there one nearby. In order to feel confident about what I learned in an evaluation, I wanted to see someone who really understood Down syndrome and autism. If we had to travel, I wanted to go to the best.
There were two doctors who had the experience I sought. Both were three time zones away from us. When I contacted them, they were helpful, compassionate, and very knowledgeable. For the first time I was telling someone about my child who had seen it before. Neither made me feel I was over-reacting or in denial, nor did they question what I shared about Andy.
I shared with Andy's teacher that we were taking a week off to get an evaluation for autism by someone who had experience with other children who have Down syndrome and autistic spectrum disorder. To my surprise, she told me she was relieved I was doing this because she had been wondering how she could suggest this to me about Andy. I often wonder how many people felt this way.
Over the course of five days, we were scheduled for a full evaluation: Medical, Neuropsychology, Behavior Psychology, Speech and Language, Augmentative Communication, and Occupational Therapy. We were scheduled for an EEG, but due to scheduling conflicts that was postponed for another time.
Andy scored well within the range of autistic spectrum. Medications designed to help with some of Andy's more difficult behaviors (impulsivity, fear, and repetitive motions) were suggested. I always thought that moment would be devastating, but it wasn't. I've pondered why that is and now realize that it is because every person we met with, including the neuropsychologist who conducted Andy's first--and last--IQ test (I don't believe they're very helpful), greeted Andy with respect and looked for all the things he could do. For the first time I wasn't hearing about prerequisite skills or what he couldn't do. In fact, during our visit with the augmentative communication specialist, I was able to share my frustrations about making choices and prerequisite skills for using augmentative communication. She spent time trying to understand everyone's concerns, but in the end, she agreed with my assessment of Andy. He made choices for her. He liked using voice output. She felt he understood communication and had communicative intent, but that he didn't understand the rules to communicating because they were different at home, at school, and in the community.
At the end of our week I left a new mother. I learned a lot about my son and he was given a new diagnosis. Most importantly, I was validated in the overall direction I was taking with him. What a gift. It is still among the best things I have done for Andy and for myself.
The diagnosis or label of Down syndrome and autistic spectrum disorder (DS-ASD) came as no surprise. Even so, I had no idea what to do with the information. How does it change what I do with Andy? How does it change how he learns? Literature searches turned up next-to-nothing on the subject.
Since our visit I have focussed my questions and investigation on solutions for Andy: teaching methods, communication strategies, and even behavior plans. We chose to try one of the medications suggested to us with what I consider good results. He doesn't get lost in his own world anymore. He is staying in ours, along with his jump ropes and other favorite toys. He is clearly making choices, and beginning to answer questions with his picture symbols and voice output device. And this year he made some friends at school.
This issue of Disability Solutions is a collection of information that I feel is essential for parents who are either concerned their child may have DS-ASD or is diagnosed with DS-ASD. It is all the information I wish I could have had immediately:
- a medical and research overview, steps to communication,
- suggestions for teaching suggestions for changing inappropriate behaviors,
- an explanation of sensory integration,
- observations of gross motor skills, and resources.
Every resource in this issue has been helpful to me in some way. There isn't information specifically about how to teach children with DS-ASD, but there is information about teaching children with Down syndrome and information about teaching children with autistic spectrum disorders. One of the best pieces of advice I received early was from a father of an 18-year-old with DS-ASD: "Consider the autism as the primary disability. Andy may have Down syndrome written all over him, but it's the autism that gets in the way of his learning and reacting in a way that you expect from a child with Down syndrome." This approach has worked well.
Don't be afraid to admit that you need help. I wish I had asked for help earlier. The needs of a child with DS-ASD are immense. It is exhausting. The obstacles you face to going forward will always be there. This is especially true because the idea that children with Down syndrome can also have autistic spectrum disorder is relatively new to professionals.
I have found it difficult to accept that I cannot do this alone. But I can't. There really is no reason to try to except for my pride and fear of being rejected when I ask for help. I am now beginning to work on developing a better support network for our family. Even this takes time and energy that is in short supply. Yet I can see the impact it will have on our quality of life. It gives me hope.
Yes, it must have been a different life when my greatest concern was "Down syndrome." We are here now, in a new life, we are going forward again, and Andy is happy. We have a long way to go with him. There is still much to learn. I hope that by sharing our journey to this point other parents and professionals will open their hearts and minds not only to the idea of the dual diagnosis, but to the possibilities that exist in every child. If you are a parent of a child with DS-ASD, sit down and take a breath. You are not alone.
Joan E. Guthrie Medlen is the mother of Ryan, 13, and Andy, 10, who has Down syndrome and autistic spectrum disorder. Joan is a registered dietician and the editor of Disability Solutions. She and her family reside in Portland, Oregon.
The article above is reproduced from the September/October 1999 issue of Disability Solutions, Volume 3, Issue 5&6 . Permission was granted for its use on this web site. In accordance with federal copyright restrictions, the contents of this article may not be reproduced by photocopying or any other means without written permission from the copyright holder. © 1999 Disability Solutions
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