Saturday, April 29, 2017

He is Still My Son

For months—if not years—I tried to ignore the signs. It was easier to make excuses. It was easier to brush them off. It was easier to assume that the behavior patterns I was seeing in my son were all related to Down syndrome or simply personality. But no matter how hard I tried, my suspicions grew…

As a two-year-old, one of Benjamin’s favorite pass times was to sit and twirl his little high-lighter yellow, stuffed gorilla in his chubby, little hands. He would study it from every angle, entirely absorbed and fascinated. It was pretty darn cute, though we always tried to encourage more interactive play. As a seven-year-old he still continuously seeks out plush toys (monkeys and Elmo are his personal favorites, but anything with limbs will do) so that he can obsessively twirl them or chew on their limbs. It is no longer cute but concerning. 

As a three-year-old, his fascination with light-up, musical, baby toys and the spinning of his See-n-Say, seemed age appropriate for his current level of play. He loved the repetitive patterns of the sounds and lights. As a seven-year-old, his interest in toys has not progressed, and he his favorite toys remain the same. They have become the common background noise in our home.

When Benjamin was only a few years old I would attend play dates with him so he would have the opportunity to be around other children. He showed little to no interest in them, but I chalked it up as his young age and current developmental level. After years of opportunity for peer interaction at school, and now the presence of younger siblings at home, he still displays little to no interest in playing with other children (unless they can sing him “Wheels on the Bus” with the hand motions)! So much of the time he seems to be off in his own little world. 

For so long I have been aching to hear my son say “Mama,” or any purposeful word for that matter. As the years slip by, his non-verbal state becomes more heart-breaking, but I continue to hold onto hope that one day he will speak.

When the repetitive hand-flapping surfaced a year or so ago, my suspicions grew even more. As a member of various Down syndrome support groups on social media, I was also becoming increasingly aware that our life with Down syndrome looks VERY different from others. But still, I struggled to admit my concerns. I was afraid that giving voice to them would solidify them, and was I ready to face that reality?

Finally, I realized that I was being selfish. I wanted to resist what I was sensing because I didn’t want to deal with the pain that may result. Benjamin is my son whom I love with all my heart. Nothing will ever change that, and understanding what is truly going on with him will make it easier to give him the help he needs. So, with a deep breath and a new resolve I told my husband, “I think we should have Benjamin tested for autism.”

There... I said it…I can’t take it back again. Shawn was surprised and resistant at first. He had been making the same excuses. He feared facing a dual diagnosis as well. I explained to him my reasoning, and before long he relented and even supported the new quest.

Where to begin? I began by contacting the pediatrician’s office, requesting a referral for testing. I was shocked by the response I received. “There is no reason to test Benjamin for autism since he already has Down syndrome. It wouldn’t change anything.” EXCUSE ME!!! At best this response was outdated ignorance. Not to be deterred I reached out to the local support group. I was referred to a child psychologist who would not require a doctor’s referral and whose services would be covered by Benjamin’s insurance. Thus, began a several month process--largely due to scheduling gaps caused by his full caseload.

There was the initial consultation with my husband and me, there were mountains of paperwork and questionnaires to be filled out, there was a one-on-one observation session with Benjamin and the psychologist, there was a joint observation session in which my husband was present and able to answer questions, and finally, there was the ending consultation that I attended while the psychologist reviewed the official results with me. This last session was less than a week ago at the time of this writing. Going in, I expected him to tell me that Benjamin is indeed on the spectrum, but I was hopeful that it would be a mild case. It was both surprising and disheartening to hear him say that my son has autism spectrum disorder level 3—the highest level. He did assure me that this can change as our son grows and develops and as we continue intervention services with him. But still…my baby boy is faced with another daunting hurdle after having been through so much since he was born.

That evening after Benjamin was asleep I snuck into his room and lay down beside him. I held him, and kissed him, and prayed over him. I told him how very much I love him. He is still first and foremost my son. A new diagnosis does not change that and never will…

This is the same little boy who opened my womb, giving me my first positive pregnancy test after over two years of trying and countless tears of longing to conceive, finally making me a mother…

This is the same little boy who flooded my heart with an intensity of love and a pain I never knew was possible when he entered the world fighting for his life

This is the same little boy who defied the odds and was nurtured at my breast for over two years…

This is the same resilient little boy who has overcome challenges  both medical and developmental, all the while teaching me that what others may perceive as little things are cause for big celebration!...

This is the same little boy whose favorite things are his See-n-Say, “Wheels on the Bus,” Elmo, and stuffed monkeys, (not to mention food!)…

This is the same little boy who has always loved to have Mommy sing to him as he holds onto my neck and bobs up and down, dancing with delight…

This is the same little boy who has flooded my heart with joy every day with his sweet smile, contagious laughter, and affectionate hugs

This is the same little boy who re-ignited my passion for writing and became the inspiration for my first book Reflections from Holland: A New Mother's Journey with Down Syndrome

This is the same little boy who has given my husband and me the opportunity to connect with a beautiful community of people over the years who we may have never met otherwise…

When Benjamin was a newborn fighting for his life in the NICU, we knew very little about Down syndrome. So, what did we do? We began to educate ourselves. We allowed ourselves to grieve. We reached out for support. We prayed. And above all—we LOVED our son. We took to heart the wise advice from a dear friend to “Celebrate your son every day.”

We are now at a new crossroads with Benjamin’s new diagnosis. Presently, we still know very little about autism. So, what will we do? We will begin to educate ourselves. We will allow ourselves to grieve. We will reach out for support. We will pray. And, most importantly, we will continue to LOVE our son. We will choose to celebrate him every day, through good times and bad. After all, at the end of the day, Benjamin is still our son, and he is enough!



  1. Praying for you all Dana. God has a plan and a purpose for everything about Benjamin's life. I am praying for wisdom and discernment as you pursue the best therapies available to help Benjamin relate to those around him. Thank you for being open and honest about your journey.

  2. Your world seems a lot like ours. Our daughter Bethany has a dual diagnosis and is 20 years old. Her greatest passion is dangling and sorting strips of fleece. She has very little interest in people who are not in her inner circle. She did say words at one time but has chosen to not speak unless she gets very angry. She is in her own little world but is happy. She is our blessing.

  3. Wow you told this as though it was my own story and I sat here and cried through the entire article. My son is 12 and he enjoyed the exact same things as your son. He loved the light up toys when he was younger, the see n say loves me make animal sounds, love to "dangle" toys started with a long limbed monkey and now my mother in law makes him a special dangly is what we call them, I long for the day he says mama and tells me all those amazing thoughts that go through his head, and he also has DS. He's my special little boy whom I love dearly and brings pure joy to our family, his smile, his laugh, he's wonderful amazing and has taught my family so much! Thank you for sharing its nice to know there's others just like us ��

    1. Thank you for sharing! I'm so glad my words could encourage you today. Be blessed!

  4. Hi Dana,
    What was a lovely post! You capture the essence of what it is to have a child that has 'more than DS'.I can so identity with your story!

    My son Robert is now 13, diagnosed with DS at birth, ASD at aged 8 years old. I too had concerns from about aged 3 years old, mainly reading posts in forum ( no FB when Robert was born).

    In the five years since getting ASD confirmed I hardly recognise my son. He has made amazing progress with language, social, academics.

    A few things we did that helped us....we moved him into a special ed class with four other kids, one teacher and an aide. Prior to this he was in a mainstream setting with 28 kids, one teacher and a aide. We got several sleep studies done and we got top of his chronic sleep issues. We engaged the services of private BT who put supports in place for my son both at home and in the new school setting. This was very important cos it help educate us to the supports and approaches that my son needed to support his ASD. Supports like visual schedules, time timer, first/ then, reward charts, etc. We still use many of the support five years on.
    ASD became my new found project and I got an education in it!!

    Five years into Dual Diagnosis Land the biggest thing that helped us is the passing of time. With maturity has come wonderful positive changes for Robert that I was told would never happen. They did happen but only at his pace and when he was ready.

    So I write to wish you all that is good as you take the next step on your journey with Benjamin. You are so right when you say its about the love that binds us. You are a wonderful mother....stay strong.

    1. Thanks so much for sharing your story with me!

  5. Wow! I don't know what was wrong with me! We also have just received a second diagnosis of my son being within the spectrum. He is 18 years old!!!!! I thought the psychiatrist was crazy! I guess there were big signs - severe limitations on what he eats, flopping a "Groovy Girl" doll in each hand. Other behaviours seemed to simply be OCD, and a doctor told me if it wasn't interfering with his life, leave it alone. He does have limitations socially but I thought it was the DS, and being extremely naive. Like I was! He tries so hard to be social, but much of it is copying what other people say. He is so young for his age, as was I and one of his cousins. Initially my heart was breaking that he had something else to deal with. Then I realized that was a foolish thought! His life was not suddenly different, but he now likely would be able to access more services!
    Mottos in life
    There is always something positive that comes out of negative situations
    Find something to laugh about instead of something to cry about. Got a long list of those!! ��

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