BOOK REVIEWS

He Has Up Syndrome Not Down Syndrome

Author: Caroline Brandt
Publisher: Publish America, Baltimore, 2004
Reviewed by Prof. Talaat I. Farag

 This 61-pages illustrated book includes 19 chapters, was written by an optimistic grandmother of a grandson, Riley, with Trisomy-21. The author is an attentive person and a mother of two daughters, who adores children and loved playing and reading with her grandchildren. She is convinced that persons with Down Syndrome are wonderful, happy, and upbeat people. She notes, "I don't know how Riley has brought us closer in different and better ways. I don't know what everyone can understand. But maybe they don't have to just accept how we cope and deal and relater with each other is all."

On October 19, 2000, she faced the birth of her grandson, Riley Joe Hoofman, weighing 5 lbs 12 oz. Soon after the birth, the doctor mentioned to the mother that he had Down Syndrome, and that he will be doing a blood sample to confirm the number of his chromosomes. He also noted that the baby had low muscle tone, short neck and short fingers, with almond-shaped eyes.

The author's daughter, Misty was a 23-years-old woman and her husband Brandt is a healthy 26-years-old man, with healthy children from previous marriages. Like most parents with Down Syndrome, the family entered into a denial stage.  The family prayed to God that the doctors are wrong in their diagnosis. Upon confirming the diagnosis, this proved pivotal for them with psychological coping to the news.

The morning following the birth, the pediatric cardiologist mentioned to Misty and Brandt that their baby Riley had two holes in his heart, which is a common condition in babies with Down Syndrome, but was not to be considered as serious as it sounded.

Misty chose to breastfeed her baby, and many of her visitors said to her that their baby did not look like Down Syndrome children. After 18 days in the hospital, the doctors allowed Riley to go with his parents home, mentioning that he needed physicals, occupational and speech therapy, and that they have to offer him love and support. The other good news was that both holes in the heart had closed up and he was now fine on that front.

Grandmother, Caroline, noted that he did not cry a lot, and he loved taking his bath. She completely surrounded him with sounds, colorus, textures, and anything that might stimulate his mind or growth motor skills.

Two months following his birth, their geneticist confirmed that Riley had Trisomy-21 due to non-disjunction, like 95% of cases with Down Syndrome. On January 2001, Riley was old enough to begin physical and occupational therapy at home.

One day the therapist, when talking with Riley and showing him toys, he just looked at her and smiled. This was the moment Misty stated that her son Riley had “Up Syndrome not Down Syndrome.” A comment that brightened up the lives of his family.  Riley was growing at a slower rate, and not sitting up on his own, however we were reassured by the doctors not to worry. Additionally his hearing test showed that it was better than average.

Due to his genetic condition, Riley became eligible for Supplemental Social Security.

At 6-months old, Riley’s grandmother held him, rocked him, sang to him, read to him and played with him. He became mobile at 9-months, and started crawling. He was not even sitting up on his own yet. His mother decided to start using sign language with him, which he learnt quickly, also personalizing them. When his first birthday came, he was able to sit up in his high chair with no assistance.

Caroline enjoyed when Riley used to smile to her.

On January 2002, a follow-up study showed how Riley was progressing, which Caroline viewed as a great start for the new year.

He enjoyed listening to music, pulling his toys in his room, dance around, and trying to clasp his hands.

When he was 21-months-old, he finally started pulling himself to the coffee table and stand-up. Days later, he stood there without any support, and only a week later he took his first step. For about a month, he did his walk-crawl combo.

By his second birthday in 2002, he enjoyed integrating in a party including 40 people. By then, he was walking comfortably and enjoyed socializing with others. Riley was clearly starting to develop his own personality, which was very interesting for Caroline to see how he acted and reacted during different gatherings.

He soon began to be more independent, but was still not talking. Caroline and Riley developed a good routine together: playing, reading, dancing, and eating. She notes how she greatly enjoyed his presence in her life.

As he grew, he became integrated with his family, friends, and later on in school. At the age of three, he enrolled in the Sunshine School – a program that provides educational, physical and occupational therapy through State agencies in a class of five special needs children (including two other kids with Down Syndrome) for 6-hours daily, 5-days a week. This program really helped Riley, and his photo was featured in the local newspaper with a big smile. Based on the his interactions at the school, Riley started playing with little toy action figures, and would try to talk to them, and before he reached his 4^th birthday he began to talk.

Caroline says that, “when it came time to kiss Riley goodbye, he would start crying. When we get in the car to leave, he reaches to me with real tears. I could not believe it. He really realized I was leaving and did not want me to go. He knew me. He loved me. That’s where I wanted us to be. It was all worth the struggle. Riley knew I was his “Momo” [grandma].” At this moment, like Misty, Carolie beloved that Riley had Up Syndrome not Down Syndrome.

Caroline tells her story with her grandson and her daughter, Misty, and the tears, laughs, and smiles that he has brought to the lives of various family members. The book is about her family overcame the obstacles they encountered with their gift of a wonderful baby, written by an optimistic grandmother that always looks at the positive side to all challenges faced in life.

A review of the book written on Amazon.com says, “[It is a] Very touching story about a family dealing with a Down Syndrome child. Reads very well and fast. The author is very honest in her writing."
 

     
Photos from the website of Caroline Brandt (http://www.carolinebrandt.com/).

The Ambassadors Magazine had previously published an article in 2008 entitled, "Lessons From Celebrities With Down Syndrome", which we invite all readers to re-visit in light of the story of Riley and his grandmother Caroline. It can be found at: http://ambassadors.net/archives/issue24/educators.htm. One example is that of the Kuwaiti and Egyptian friends, Mr. Omar Al-Awadi and Mr. Amr Waly, both with "Up Syndrome", who are gifted with musical talents and are sociable.