The young mother put her baby down on the bed and eyed him lovingly. “Baby,” she said softly, gently moving his head to face her. She looked into his eyes, but he did not meet her gaze. He looked to the side, turning his head away from her. Perplexed, again she moved his head and looked directly into his eyes as she said his name. But he did not look at her. He stared blankly to the side, and slowly turned his head.
“There’s something wrong with my baby!” she exclaimed, a tenseness rising from her belly.
“Teddy!” she said tersely. She turned his head to her, this time not so gently. But he simply stared blankly in the other direction, and turned his head away slowly.
“There’s something wrong with him!” she choked, tears coming fast. She began to tremble. “I think he’s brain damaged!”
The world changed suddenly from a safe, predictable summer afternoon to a fury of anger, despair and anxiety. The doctors were not able to tell her what was wrong with her son. The baby she thought she had, who would love her and grow into a happy, healthy, little boy, was dead to her. Instead, she had this stranger who did not respond. She became exhausted as the months wore on, wrestling to care for a child she no longer knew or wanted, haunted by the dreams her guilt wove into bizarre scenes:
A man in surgical garb hands her a bundle in a pink and blue striped receiving blanket. “Sorry lady. this is your baby. He’s a little damaged, and here’s the booklet that outlines the damages”. The mother turns to page 1.
– Cerebral palsy [1]. (You mean one of those beautiful children who looks like she’s wearing all sorts of bracing, smiling at me from the canister on the counter at the pizza place?)
– Attention Deficit Hyperactivity Disorder [2]. (You mean that uncontrollable child who can’t sit still, screaming, tearing around McDonald’s and climbing on the tables and jumping off?)
– Down Syndrome [3]. (You mean that stereo-typical looking little person who bags my groceries when I get in the wrong line?)
– Developmental Delay and Developmental Disability. (You mean the kid who sat alone on the bus and we all made fun of him?)
– Autism [4]. (You mean the child who lives in his own world and who sometimes hits his head against the wall?)
The mother wakes suddenly and rushes to the crib. “Teddy?” she says in a whisper, barely moving her lips. She picks up the little boy and holds him closely, gently. Finally, she has recognized him as her son, as the baby in her heart. She closes her eyes and cries out to the Heavens, “Oh, my little boy! What will become of us?”
The story you have just read tells the heartbreak and fear of learning that your baby is not the normal, healthy baby you thought you had. There is loss: loss of the dream of having an easy, predictable family life. For a good many parents there is shame and prejudice to overcome in accepting a child who is less than perfect, outside the norm. You may feel like you don’t know anything and you so desperately want to do the right thing. Or you may be mad with God for giving you the short end of the stick.
https://www.parentingspecialneeds.org/article/coping-life-never-imagined/
I had known by the fourth day after birth that my son, Teddy, was “not right”; unresponsive. I voiced my concern to my family, but they said I was worried for nothing. As a baby and toddler, Teddy did not seem interested in people. He played with blocks and seemed happy enough, so I thought he was just “different”. But when he did not say more than “Hi” and “MaMa” by age 2 1/2, his father and I took him to a pediatric neurologist, who said that Teddy had “static encephalopathy”. He had some sort of brain damage (encephalopathy), and it was not getting worse (static). However, the doctor did not know what kind of damage it was, why it had occurred, or how normally/abnormally Teddy would develop.
All of a sudden I looked at Teddy-my-son and saw Teddy-the-problem-to-solve. I became anxious, frantically trying to educate myself in speech and occupationalttherapy. I wanted to be the best mother there ever was so Teddy would have the best chance. But, the best chance at what? Why the best chance at being normal, of course.
But he was not normal. Parenting Teddy was like parenting 3 children. He needed so much extra help to do everyday tasks, like brushing his teeth or getting dressed. He was so disorganized. He would put on his jeans, and then his underpants on top of them! I was so harsh in my judgments of him. (Did I notice that I muttered unkind words to myself, too, when I did something wrong?)
As Teddy got older it was clear that he was a child with Asperger’s Syndrome [5], a part of the autistic spectrum. Asperger kids have a difficult time processing abstract information, like reading people’s faces and emotions. They need things explained concretely. They perseverate on a few topics that interest them, but they become skilled and knowledgeable in those few areas. When Teddy was 5, he had memorized the names of each of the American presidents, their birthdays and the days they died, and the birth and death days of their wives. Now at age 18 he’s interested in politics, music, and movies. He has a hard time comprehending text in other subjects, but his strengths of patience and curiosity help him to compensate.
Teddy is a joyful person to be around. When he was in elementary school he was called the Sunshine Boy, for his wonderful disposition. In his sophomore year in high school Teddy was voted student of the month by the staff, for his congenial personality. He has done so well in Spanish that he was inducted into a Spanish Language Honor Society. He is also making plans to attend the local community college.
Teddy has a job [6] at the local supermarket as a cashier. Every time I go to pick him up he’s late, because he’s busy talking…to workmates, to customers, to anyone who will talk. Even when we go to Wal Mart, we meet customers from the supermarket who he stops and chats with. I have spoken with his manager and she tells me he is the most popular cashier they have. I am so proud of him!
Teddy is a remarkable human being. He has become organized and neat, and offers to help when he perceives a need. Teddy makes his bed, empties the garbage, clears the table, unloads the dishwasher, does his own laundry, and cleans the bathtub. Cheerfully! Can you say that of every teenager, normal or not?
A journey taken alongside Teddy’s journey from childhood to young manhood is that of his mother: me. I have learned that it is not, in any way, what you achieve in life, but how well you move with other people, and how well you love. Simple. Straightforward.
If you are a new parent of a special needs child, take heart. There will be some difficult times as you adjust to this new way of life. Surround yourself with family and friends. You were not meant to go it alone.
Or, if you are the friend of a special needs parent, open your heart, but also, open your mind. Everyone benefits in an inclusive society [7].
And, most of all, everyone open your eyes and ears to the love that this special child will bring to your life. Listen with both ears and put the volume on loud!
Visit Katherine Stroh at [email protected]
You May Also Like
- Coping with the Life You Never Imagined [8]
- Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves [9]
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs [10]
- How to Get Free From Unrealistic Expectations of Motherhood [11]
- I Do Not like Being a Special Needs Parent and That’s OK [12]
- Being United, Pampering, and Taking Care of Ourselves [13]
- The Special Mother [14]
- An Ode to the Exceptional Mom [15]