Revolutionary Grandparents: Generations Healing Autism with Love and Hope
180
Revolutionary Grandparents: Generations Healing Autism with Love and Hope
180Hardcover
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Overview
Many of these grandparents have moved in with their children and grandchildren to help with daily tasks—all have had to alter their lives drastically. From their front-row seat, they recount their stories. They describe what they observed and felt as their grandchildren regressed into autism, as well as the challenges their families faced as a result. But more importantly, they also write about the progress and the successes of their grandchildren. No two stories are alike in their details, but each one is similar in its honesty, passion, and overwhelming hope. Positivity is the common thread that ties together this unique collection of mini-memoirs.
Product Details
| ISBN-13: | 9781510705388 |
|---|---|
| Publisher: | Skyhorse |
| Publication date: | 06/07/2016 |
| Pages: | 180 |
| Sales rank: | 703,815 |
| Product dimensions: | 5.80(w) x 8.30(h) x 0.90(d) |
About the Author
Team Thinking Moms’ Revolution is a not-for-profit organization that assists families with medical, emotional, and financial hardship following their children’s diagnoses of autism and other developmental disabilities. They are based in Naples, Florida.
Dan Burton is the former US Representative for Indiana’s fifth congressional district. He was born in Indianapolis, Indiana.
Read an Excerpt
CHAPTER 1
Bubby The Power of Play
THERE ARE MOMENTS IN LIFE WHEN TIME STOPS AND YOU KNOW THAT your world has changed so completely that nothing will ever be the same again. I experienced one of these moments when my daughter phoned and told me between tears that she was sure that our seven-month-old grandson Ri was autistic. At first I challenged her and refused to believe the behavior — or rather, lack of behavior — she described meant that Ri was autistic. He was our miracle baby. How could he be autistic?
Our daughter had several miscarriages before the doctors finally discovered she had a blood disorder related to vitamin B12 and an inability to convert B12 into the methylated form that can be used by the body. This disorder caused blood clots to form during pregnancy. Eventually a solution was found. Although it was a high-risk pregnancy for both mother and child, our miracle baby was born. We were ecstatic. He was a beautiful baby. My husband and I stayed for two weeks after Ri was born to help out; then we drove back to our home eight hours away. We were long-distance grandparents. It was very difficult to leave our grandson, but we were determined to form a lasting relationship with him and visit as often as possible. I did not know then that it would be several years before Ri recognized me as his Bubby. (That's the Yiddish word for grandmother.)
There were some early signs that something was amiss. Ri had absolutely no interest in people. He avoided eye contact at all costs — he would move his head just to avoid meeting someone's eyes. He screamed if his hands or feet were touched. In general, it seemed like he was asleep with his eyes open.
When Ri was twelve months old, the pediatrician agreed to have him tested at my daughter's insistence. Two people from Early Intervention Services came to observe Ri playing at home. Our daughter said that Ri was quite enamored with the younger of the two women and, for the first time in months, was focused and played normally. He laughed, made a little eye contact, and even sat in the woman's lap. The observers felt that he was a normal healthy baby and told our daughter not to worry. When they left, however, he returned to his regular, placid, and unreachable demeanor.
The periods when he was absent, just staring into space, became longer and longer. He was easily upset and had meltdowns for no apparent reason. It became difficult to take him grocery shopping or to the mall because of his meltdowns. Even going from upstairs to downstairs prompted a daily thirty-minute meltdown. My daughter continued to take Ri to the storytelling time at the library, play dates, the park, and children's birthday parties, but she could see that his development was falling further and further behind the development of neurotypical children. She called me daily, her voice filled with concern. All I could do was listen, since we were long-distance grandparents. I could not drop by and give her a break so she could take a bath, go to the gym, or go for a walk to clear her head.
When Ri was fourteen months old, the family came to visit us in Canada for a week. On the second day of the visit, Ri started to cry and would not stop for what seemed like hours. His dad took him upstairs to calm him down, and Ri continued to cry until he fell asleep, exhausted. His dad felt that Ri wanted to go home, and when he realized he was not going home immediately, he had a meltdown. It was a very difficult day for all of us, because we could see that something was terribly wrong. Ri was not improving; he was getting worse.
When he was eighteen months old, my daughter and son-in-law took Ri to a specialized clinic to be tested again. This time the results were devastating! The doctors predicted that Ri would never recognize his parents, never be able to function on his own, and never even be able to follow simple directions. They said he would probably need to be institutionalized when he was older and that there were "some very nice institutions nowadays." They gave my daughter and son-in-law a pamphlet from Autism Speaks and sent them home completely traumatized.
How could this be? What could be done? How could we, Ri's grandparents, help change this terrible diagnosis and make everything better? We thought we couldn't; we thought no one could. Fortunately, our daughter is a fighter! She started researching what services were available in her community and signed Ri up for Early Intervention Services. For Ri, these services included ABA (applied behavior analysis) and occupational therapy. Our daughter worked with Ri as well to support the work of the professionals. They did repetitive exercises, such as pointing to the correct object, putting together a four-piece puzzle, jumping on a trampoline, and trying to catch a rolling ball. Quite often, Ri was frustrated and had meltdowns, not understanding what was expected of him. He was confused. He did not recognize us or his parents. He did not respond to his name. He repeated episodes from children's TV shows over and over, not understanding what he was saying at all.
And yet, despite all of this, Ri had a wonderful personality. He enjoyed dancing to music, playing his drums, and — when he was not having a meltdown or hiding in his own world — he had a mischievous smile. He loved his My Baby Can Read videos and could read at eighteen months, though he did not understand what he read. He also loved Thomas the Train shows and toy trains. But Ri did not play with his trains like other children his age. He banged them together or lined them up over and over again. Ri also spent hours counting from one to twenty both forwards and backwards. He must be bright, we thought; otherwise, how could he read and count? It was all very confusing.
When we visited, we had to tiptoe around the house for two to three hours before he would acknowledge that we were in the house and accept our presence. Sometimes, inadvertently, I said or did something that irritated Ri, and he responded by crying and screaming for five to ten minutes before we could calm him down. Once, he took my hand and started leading me somewhere. I was excited, thinking he wanted to play with me. Sadly, he led me to the front door. He wanted me to leave his house, because he had no idea who I was or that I had come to play with him. During another visit, Ri took his Zaidy's (grandfather's) hand and walked him to the front door. My husband was crushed.
Our daughter and son-in-law saw that ABA was not working for Ri. It was only making him angry and causing him to withdraw even more into his own world. Our daughter continued her search for a therapy with a different approach. One day she phoned us, quite excited. She had found a behavioral program called the Son-Rise Program that was specifically developed for children with autism. What was so amazing about this call is that on that same day I had been looking for similar programs in Canada. I had heard of the Reena Foundation in Canada for developmental problems, and my Google search for Reena kept showing the Son-Rise Program in the US. I went to their site and was just starting to read about it when my daughter telephoned. Talk about coincidence! This had to be a good sign.
My daughter was sure the Son-Rise Program would help. What she liked about its approach was that you, the parent, play with the child and "join" in their repetitive play. Instead of prohibiting their repetitive behaviors, you use them to show your child that you are interested in their world and share their interests. Eventually, your child notices that you enjoy and want to participate in their activities. After you join your child in their world, you slowly begin to offer them the opportunity to get involved in yours, using whatever motivates them, no matter what it is. This, of course, takes years, but Son-Rise had videos that showed how over time the program could improve the quality of life for the whole family. Our daughter convinced us that this approach could work. Best of all, we, the long-distance grandparents, could help by being volunteers on Ri's Son-Rise Program team.
My daughter went to Massachusetts for the five-day Son-Rise Program Start-Up to learn how to set up a playroom, gather volunteers, lead team meetings, set manageable goals, and play with her son in a way that would inspire growth. She explained to us what needed to be done. By that point, my husband and I were both retired, so we came and helped set up the playroom by moving furniture, setting up high shelves, and buying some of the equipment. Soon the room was ready. I was the first volunteer. I watched Ri and my daughter play together via a webcam that was set up in the playroom and learned how to handle his meltdowns, follow his lead, and play the way he played, even if it was not how kids usually played. There was so much to learn, but I did it! Our daughter hired several wonderful college students (with no experience with autism) and trained them in Son-Rise as well.
Ri loved the alphabet, counting, and naming the American states and their capitals. So, as a volunteer, I learned to love those things too. Ri and his team spent weeks counting and repeating the alphabet because that was what Ri liked to do. Gradually, he began to look into my eyes more often when he wanted another toy or when he wanted me to say the next number. After hours of play, he started to play a game a bit differently or use a toy in a new way. For example, the Son-Rise Team spent six hours a day for two weeks just watching Ri put together an ABC puzzle. They weren't allowed to speak or participate to make sure Ri didn't have a meltdown. So they silently cheered him on by raising their hands in the air to show they supported his repetitive behavior. Gradually they were allowed to quietly cheer him on. Then one day our daughter tried to hand him a puzzle piece. When she had tried to do this in the past, he screamed, cried, and grabbed the piece; this time he looked at her briefly and smiled. Over the next month the team built up the activity to where they were taking turns with Ri putting the puzzle together. We were making progress, and because I came to visit for a week every six weeks, I could really see the improvements. He enjoyed the playroom and actually dragged me in to play with him, not out the door to leave his house. The Son-Rise Program was working!
Now when we came to visit, we no longer needed to tiptoe around the house for hours. One day, about a year into the program, my grandson spontaneously turned to me and said, "I love you, Bubby!" The tears welled up in my eyes. Ri knew who I was and wanted to be with me! Ri now also recognized his parents and my husband, and he felt secure with us and his Son-Rise Team. Another miracle!
In Ri's case, there is one more piece to the puzzle of his autism. At around the same time Ri first told me he loved me, my daughter took him to a DAN! (Defeat Autism Now!) doctor. A series of blood tests showed that Ri's methylation cycle was all messed up, which meant that his body could not metabolize vitamin B12 into its methylated state, MB12. This vitamin is crucial for the development of brain cells and the functioning of the brain and nervous system, so Ri now receives daily injections, given by his parents, of methylated B12. The DAN! doctor stated that some kind of therapy program and methylated B12 injections are both required to help Ri recover from autism. The Son-Rise Program started his recovery, and the methyl B12 shots significantly sped up the process!
Meanwhile, magic was happening in the playroom. The team enthusiastically participated as Ri scripted his own TV shows. We waited for moments of opportunity (when we felt a connection) to ask a question or change the story slightly; over time, Ri started to answer those questions and made more room for our suggestions. These interactions grew and grew until the team was creating entirely new stories together. We used specially tailored games and our energy and enthusiasm to teach him how to do all kinds of things, like making and reading facial expressions and creating new stories of his own. We never pushed him to perform; instead, we waited until he was ready to engage. The only reward was the human interaction itself, and we eventually taught Ri how to be a friend by modeling friendship for him.
Approximately two and a half years after starting the Son-Rise Program, Ri had completed all of its stages. He is an inquisitive, happy child. He knows how to calm himself down when having a meltdown (though he rarely has these anymore), and he plays with a wide variety of toys properly instead of just banging them together. He talks in sentences and responds to questions and to his name. We have conversations together, and he is interested in us. He enjoys baking cakes, playing soccer, and doing science experiments with his mommy. He goes to a regular pre-school, has friends, and arranges play dates. He even asked to have a Halloween party at his house this year and insisted on inviting the whole class.
Who needs scientific proof that Son-Rise works when these words say it all: "I love you, mommy and daddy," "I love you, Bubby and Zaidy." I can even talk to him on the phone! Granted, there are still some mountains to climb. Though he is fully verbal, Ri has to undergo speech therapy to help strengthen the muscles in his mouth, and his Daddy practices his exercises with him every night with tremendous results. Ri also receives occupational therapy to overcome weakness in his other muscles. He is making progress here also. Sometimes he has a little trouble focusing and can seem a bit scattered, but he loves to play and chat, share his feelings, and ask questions. He is a really charming little boy.
During the last visit to see the DAN! doctor, my daughter was told that Ri did not exhibit any signs of autism! His ATEC score, which started out at 154, is now 2. (The higher the number, the more significant the autism. Anything below 10 is considered neurotypical.) We are so lucky to have found the right combination of biomedical and behavioral programs for our miracle grandchild!
Thank goodness for the Son-Rise Program, Ri's Son-Rise Team members, DAN! doctors, our loyal, loving son-in-law, and our courageous, persistent, hopeful, brilliant daughter. It was daunting going into Ri's program for the first time, but I am so glad that I got to witness and be a part his journey out of autism.
Final update:
Today, at six and a half, Ri is in a regular first-grade class at a private school. He is continuing to develop and mature. He enjoys reading, building Lego sets, writing stories and comics, learning robotics, and just having fun! He also has arranged a few play dates with his classmates at school. His passion for life, cheerful disposition, inquisitive nature and playfulness continue to amaze me.
Bubby (Friend of Team TMR)
CHAPTER 2Pop Finding the Proverbial Happy Ending
MY OLDEST CHILD WAS BORN IN ARLINGTON, TEXAS, ON FEBRUARY 5, 1967. I took my wife Marsha to the hospital around one or two in the morning, excited and a little nervous, but not terribly anxious because I had seen my mother go through this several times, and she always treated it like a trip to the grocery store. I'm the oldest of my mother's seven children. All of my siblings were delivered fat and happy. What could go wrong?
So when my daughter Kim announced she was pregnant with our first grandchild, there was no fear or anxiety, only joy and anticipation. On the night Kim went into labor with Patrick, I was in Greenville, South Carolina, at a Michelin tire dealer meeting. I was an independent tire dealer for decades. Marsha had cautioned me about going to the meeting when Kim was due to give birth, but the first one is usually late, so I went anyway. Kim was in Atlanta only a few hours away, so if it happened, I could get there quickly.
Well, I got the call at about 2:00 a.m. on Sunday morning and made it to Atlanta before daylight. Patrick was born on September 24, 2000, and except for his mother's damaged tail bone, the delivery was unremarkable. My mood was marked by a sense of gratitude that my daughter had grown up smart and beautiful, married a man who loved her, and delivered to her parents this extraordinary grandchild. This was another chapter in a story that could not conceivably avoid the proverbial happy ending.
Sam and Kim had both graduated from the University of Georgia. Both had successfully worked in their degree fields in Atlanta. If a parent had written a script for their child to follow, this is how the script would have read. As the oldest of seven, I had a childhood that was more about survival than nurture. But my grandchild's life would be guided by mature, well-educated parents, who were well read in the art and science of parenting.
(Continues…)
Excerpted from "Revolutionary Grandparents"
by .
Copyright © 2016 Helen Conroy and Lisa Joyce Goes.
Excerpted by permission of Skyhorse Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Foreword Dan Burton ix
Introduction xi
1 Bubby: The Power of Play 1
2 Pop: Finding the Proverbial Happy Ending 9
3 Shadow: Sunshine Lights the Way 17
4 Gypsy; Autism Times Two-Clearing the Way for Hope and Healing 27
5 Team Hudson: A Journey Paved in Love 39
6 Guamma: My Hero 45
7 Mickey: Get Up You SOB, Because Mickey Loves You 55
8 "Yee Haw!": Hope and Healing across Generations 65
9 Twilight: The Possible Dream 74
10 Crackle and Pop: "No Mom and Dad-Just Grammy and Papa" 85
11 Pete: Helping My Daughter's Family Walk on Water 91
12 Roxie: Blessed 96
13 Moira: If I Knew Then… 102
14 Rembrandt: What's on Your Resumé? 111
15 Shotgun: Riding Shotgun 123
16 Za Za: My Journey with Carmine 132
17 Tiger Lily: Song of Sweetwater 139
18 Yia Yia and Papou: Healing Harry 149
19 Peaches: Autism Highway 157
Afterword: Jackie Goes Off 164