When Ethan was discharged from the hospital, they sent us to meet with the social worker. I don’t remember much of our conversation, but I do remember saying I was looking forward to watching him reach his milestones.
I anticipated enjoying being a mom and loving this baby and teaching him and learning from him. I wanted to see and celebrate the first time he held his head while on his tummy, the first time he rolled over, and so on. I didn’t know what to expect but I knew his development would be different. I just didn’t know in what way. The social worker reassured me that all those milestones would come, but just at a slower pace.
Rosaura and Ethan share their emotional story of dual diagnosis and their many efforts to find their tribe. Ethan's story and many others provide inspiration and sage advice with The Essential Guide for Families with Down Syndrome.
Very few things Ethan has accomplished in his life have come easy to him. Holding his head, rolling over, walking…oh God, walking. He wanted so much to walk, and I spent weeks and months encouraging him to creep as much as possible because I had read it would help his brain and his ability to walk. He persisted every step of the way; he persisted and slowly he mastered those prized milestones.
However, some behaviors that I began to observe concerned me. Ethan couldn’t tolerate getting his nails cut. His cries and screams would make you think I was inflicting some serious pain on him. Also, he couldn’t tolerate any texture in his food. It had to be velvety smooth, or he couldn’t eat it. He would also shake his hands in front of his eyes or would tune out from reality as if seeing things I couldn’t see.
There was also the head shaking from side to side while balancing on his tummy. He enjoyed doing that. Leaving him for a couple of hours in a small daycare a friend ran out of her home was terribly stressful to him. Loud noises and kids running around was too much for him. I’d find him with quiet tears rolling down his face, seeking refuge on a sofa. Of course, the experiment lasted only a couple of days. After going through Pre-K, we decided to homeschool. Still, I tried homeschooling classes, after-school programs, and other ways to keep him with his peers and hopefully have some social time and some free time for myself. They just didn’t work.
Ethan was officially diagnosed as autistic at age seven. The diagnosis was mild to moderate autism. I left crying and couldn’t stop all the way home. Why? Why was he being robbed of his childhood?
I've learned not to share Ethan's diagnosis of autism, if at all possible. I've just decided to let people draw their own conclusions if they wish. Having a child with two life-changing diagnoses seems to bring both the best and the worst of people, even people in the special needs community.
The issue with having a dual diagnosis is that you don’t seem to fit in anywhere. The kids with only Down syndrome appear to do so much physically and are often sassy and in constant motion. The kids with only autism usually are a lot taller than my son, often very proficient in speech, and have strong interests. I'm a stranger in two worlds that I have been assigned but don’t fully understand.
Through the years I've continued with my efforts to find our tribe. I’ve joined other moms at the playground but while the other kids were having a great time with the sprinkler and the playground equipment, I would always end up walking after Ethan because he wanted to get away from the screaming and running, so we’d go exploring instead. I started taking him to the playground by myself when there was hardly anyone around. He loved it then.
While there are kind, evolved individuals who see in Ethan’s beautiful soul a boy who wants to connect and have fun, there are many others who see him with fear in their hearts; a fear that reveals itself in the stares and expressions on their faces when he’s engaging in echolalia, or repetition of noises or phrases. I try to be understanding because I know it’s a fear of their own frailty that they are forced to confront by the sight of a boy who looks, behaves, and acts differently. On days when I’m discouraged, I just don’t feel so understanding and despise those faces.
I’ve made attempts, again and again, to find friends for my son but we belong to two different villages, the Down syndrome village and the autistic one. One foot on each side, never fully on either. The hardest part has been to witness the reactions of people who, one would think, would be understanding – those dealing with their own special needs child within their family. As an example, once I got in touch with a mom whose child with autism seemed to have similar interests to mine. We started planning a playdate for the boys and for us moms to meet. As soon as I mentioned that my son also had a diagnosis of Down syndrome, the excuses started and that was the end of that.
Another time, a mom whose son has Down syndrome about the same age as Ethan, was looking for friends for her son. As soon as I told her about Ethan also having autism she disappeared from our lives before we even met.
To be fair, we have found a couple of times where the moms agreed to see if a friendship could blossom with our kids but Ethan’s inability to converse and delay in producing a response to a question hasn’t been the recipe for another child to persist but still, I’m grateful for the opportunity.
I completely understand the natural instinct to protect one’s children, but Ethan is and has always been no threat to himself or others. He longs to connect and make people laugh. He’s very good at reading people and knows when someone needs a smile and a hug. He hugs you because he has grown to love you or because he knows you could use a hug.
Practically all Down syndrome events are geared toward the “typical” Down syndrome population. I’m fortunate that Ethan can still participate in most of them to an extent. It also helps that most volunteers helping in various programs are willing to adjust to accommodate his sensory defensiveness. I go to as many events as I can where I know Ethan is going to enjoy himself, always hoping he’ll connect with others.
Every year our local Down syndrome association does fundraising, gathering impressive sums of money but no programs are ever offered for the dual-diagnosis population.
I watch the kids that only have the Down syndrome diagnosis and I cry inside. I know I always will but I’m thankful it’s more my issue than Ethan’s. Ethan is aware of being different, no matter what village we are visiting: the autistic village, the Down syndrome village, or the neurotypical village where invariably, kids of all ages stare at him. He takes it in stride. I see him in deep thought, processing his environment, and making the decision to make the best of it.
Would I remove the diagnosis from his body and brain if I had the power? Absolutely! He would still be my wonderful Ethan but without the limitations to his abilities or his chances to connect with others. Regardless, I feel honored to be called his mom.
Rosaura, Ethan’s mom
I'm thrilled to announce The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!
The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including the search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
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Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
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