Home > In Their Own Words > In Their Own Words – The Gift That Keeps on Giving

In Their Own Words – The Gift That Keeps on Giving

One never knows when one is going to be bestowed with a special gift. Though I didn’t know it at the time, on May 30, 1969, one such gift was given to me. We brought our beautiful baby boy, with his golden hair and sapphire eyes, home from the hospital three days later. He was definitely a gem, but we had no idea just how special this baby was, or how our lives would change because of him.

Since I was nervous about being left alone with the baby, my husband had arranged to take a week off from work so he could help me. Funny thing, though. He never heard the baby cry during the night, and we only had a three-room apartment. My husband would give the baby his 10:00 p.m. feeding so I could go to bed early. I was then on duty at 2, 6, and 10 a.m. Finally, Daddy would meander out of bed at about 11:00 a.m.

“I appreciate your feeding the baby at ten o’clock at night,” I told my husband, “but I need more help. Why did you take this week off, anyway?”

His reply: “I just had a baby. I’m tired.”

“Guess what?” I answered. “I’m tired, too! Tomorrow night you’re on duty!”

Well, two o’clock rolled around and my husband rolled over in bed so I gave the baby his bottle. However, I would not take “no” for an answer at 6 a.m.

My husband stumbled out of bed and wheeled the bassinet into the living room. Ten minutes later, the baby was still crying so I got out of bed to see what the problem was.  There was my husband, sitting at the dinette table, eating a bowl of cereal.

“What are you doing?” I gasped. “I thought you were going to help me! Why aren’t you feeding the baby?”

His answer: “He has to learn patience.”

I didn’t know whether to laugh or cry. I think I did both. Then we had a little talk. By the time our second son came along, dad was somewhat more attentive.

When we brought Ronnie for his one month check-up, the doctor noticed that his head tilted to one side and he could not turn it to the right, so he sent us to an orthopedist. The orthopedist said that Ronnie had a tight muscle in his neck. I would have to exercise his neck until the muscle loosened up and he could turn his head to the right and hold it up straight. Otherwise, he would need surgery. I can’t imagine the torture my baby must have felt. Every time I had to turn his head and hold it in that position, I think I cried more than he did. For the next 12 months, I did this exercise with my precious baby seven times a day, for five minutes each time. By the time Ronnie was 13 months old, the orthopedist told me I had done such a wonderful job with the exercises that surgery would not be necessary. Years later I would wonder if these heart rending exercises could cause a child to retreat into his own world.

Out of the first 13 months of Ronnie’s life, only the first month was one of total joy. From 13 months to age two-and-a-half, we had another 17 months of joy as our baby learned to walk, talk and do the things babies do. He was, truly, one of the most beautiful babies I had ever seen. His eyes became bluer and his hair looked like spun gold; a halo around my little angel’s head. He had a decent vocabulary but did not seem to be able to converse like other children his age. He was able to count from one to 10; he knew the alphabet, and some colors, and some shapes, but he did not interact with other children.  He remained a solitary figure, engrossed in his own private world. The gnawing in my stomach would not subside. I remembered the feeling I had had the day Ronnie was born. I was so overcome with joy with my new little miracle, I was afraid it would turn out to be only a dream, and my precious baby boy would be taken away from me. He was too good to be true, and we all know what is said about things that seem too good to be true.

By age three, things had not improved very much. Ronnie was able to count to 20, knew a few more shapes and colors, and was finally able to pedal a tricycle. Prior to this, he would not sit on a riding toy, as he had a problem with depth perception, and could not propel himself with his feet.  He still was not interacting with other children, and when spoken to or asked a question, Ronnie would repeat what was said to him rather than engage in conversation. The term for this is echolalia, I would soon learn. He also began spinning objects and flapping his hands, all behaviors that are typical of autism.

By now I was expecting again and was very concerned about Ronnie and my unborn child. We took Ronnie to a child psychologist who assured us Ronnie did not have autism and diagnosed him with Minimal Brain Dysfunction, or MBD, today known as ADD or ADHD. I didn’t know it at the time, but this was my first helping of what I call “alphabet soup.”

I joined the LDA, or Learning Disabilities Association, and went to their monthly meetings. While I was getting ready to attend one meeting, Ronnie, age four at the time, asked if he could come with me. When I told him the meeting was just for mommies, he answered, “No, not just mommies, people, too!”

To this day, no one has ever been able to put me in my place so effectively. 

He was so smart and we were so confused. The puzzle pieces did not fit. As each parent at the meeting described his or her child’s learning problems I became more and more uncomfortable. They were not describing my child. Their children did not have all the “isms.” “Isms” refers to behaviorisms typically associated with autism such as isolation, spinning objects, flapping hands, echolalia, rocking back and forth, and head banging (which, fortunately, Ronnie did not do). In our heart of hearts we knew what the problem was. We took Ronnie to another child psychologist who confirmed our worst suspicions and diagnosed our little boy with autism. 

We were totally at a loss as to where to proceed from there. There was no early intervention back then and the behaviors continued to escalate. I cried myself to sleep most nights and was worried that my second child would also be possessed by the same demon that had stolen my first-born child from me. I had a flashback to the day Ronnie was born, when I thought someone was going to take him away from me. Chills ran down my spine. Did I have some sort of premonition?

We enrolled Ronnie in a private nursery school and kindergarten where he did very well. He then went to a private, special education school where he remained until his graduation at the age of 21.  He is now employed at a workshop for people with special needs. He feels he is a productive member of society and is very proud of his accomplishments.

Fast forward to May 9, 2004. It’s Mother’s Day. I have been a mother for 35 years and have come to appreciate and delight in the special gift God gave me all those years ago. The special soul that was entrusted to my care is the sweetest, gentlest, most caring human being to walk the face of the earth.

Whenever I wasn’t feeling well, which, unfortunately, was a little too often due to my chronic sinusitis and migraines, it was my special son who brought me an ice pack to put on my head. When we were walking down the street and we saw an elderly lady fall, it was he who ran over and tried to pick her up. He was five years old at the time. When I broke my toe, it was he who wrapped blankets around me when I started shivering. He was 10. 

And when my best friend passed away, it was he who tried to console me. It wasn’t until the following morning, when I saw how red and swollen his eyes were, that I found out he had been up all night, crying.

 “Why didn’t you come to us?” I asked him. “You don’t have to cry alone.”

 “You were already upset,” Ronnie said. “I didn’t want to make you more upset.”

 Back to Mother’s Day. My husband gave me flowers, which he normally does. My younger son, Kevin, gave me a book on diet and exercise, which I desperately need. He knew that if my husband had given it to me, he would have been in serious trouble.  I don’t know whether or not it was a conspiracy but as Kevin said to me, “I know you want to eat healthy and lose weight and I know you would never put your son in the ‘dog house.” True enough!

And Ronnie? What did he give me? What he always gives me. A tear in each eye, a smile on my face and bittersweet joy, this time on a piece of paper that read,

Dear Mom,

I’m sorry that I couldn’t think of anything better to give you for mother’s day. That’s because I’m out of money. Happy Mother’s Day anyway. I love you.

Love,

Ronnie

It took many years to turn my world somewhat right side up again. And the years have taken their toll. I am definitely not the same person I would have been had I not been entrusted with this special person to nurture. Each day still brings new challenges and with it, more opportunities to grow. I have met many wonderful people that I otherwise, would not have been privileged to meet and I have experienced many miracles that otherwise would have gone unnoticed.

I am very quick to say that if I had the power to change things, I would certainly have chosen a different path for my son and myself. But, knowing now what I didn’t know when my world was first turned upside-down, can I really be sure?

This “In Their Own Words” essay is written by Judy Gruenfeld of  N.J.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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