In 2008, when Paul was about to attend university, I wrote the following letter to Autism Society Ontario, nominating Paul for a scholarship for siblings of persons with Autism. I want to share it here.
I would like to add that since the writing of this letter, Paul has continued to amaze us with his devotion to his many passions in life. He has worked in the Amazon in Ecuador and Brazil, worked in the Yukon, and many other interesting places. He graduated from the University of Guelph with an Honors BSc in Zoology, and is now starting his Masters degree researching songbirds. He has taken Tommy on his first back country canoe trip, and hiking in a remote part of Iceland! He has become engaged to an extraordinary woman who shares his passions and dreams. We love you Paul, and are so very proud of all you have accomplished!
May 2008
“I am writing to nominate my son Paul for the Jeanette Holden Post-Secondary Education Entrance Scholarships for Siblings of Students with ASD – 2008.
Paul was 2 years old when Tommy was born, Paul’s first and only sibling. Paul was keen to help care for Tommy with a protective attitude right from the beginning. If I needed to attend to something for a moment he would offer to watch Tommy, saying “Don’t worry Mom, I’ll take care of the little nipper!” When Tommy was still not talking at age 2, Paul theorized, saying “I think that there is a “talk tube” which connects our brain to our mouth, and when we think of what we want to say the thoughts go down the talk tube to our mouth. Tommy’s talk tube is not connected up yet, but I think that as he gets older it will slowly start to get more and more connected until finally it’s hooked up and he will talk.” He said this with great optimism, and he celebrated every small achievement of Tommy’s with great enthusiasm. Paul and Tommy spent many hours in rough-and-tumble play on our trampoline, and Paul always included Tommy in his play with his friends, who followed Paul’s example and treated Tommy like one of them. At age 5, Paul said that when he grew up he would buy the house next door to him for Tommy to live in, so he could always take care of him.
A born researcher, Paul sought to learn more about Autism from a very early age. At 7, he overcame his phobia of needles (still a problem to this day!) because he wanted to donate his blood to Jeanette Holden’s research program. He understood the importance of making this contribution. When Paul was 9, he asked if he could attend the Geneva Center Symposium for Autism with us, genuinely interested in learning more about Autism. I asked the Geneva Center if a sibling child could attend, and although they seemed surprised, they allowed it. Paul thrived on listening to the information, enjoying Temple Grandin and other speakers immensely. At age 11, Paul expressed a need for friends who understood Autism and had siblings like Tommy. As there were no sibling support groups available at the time for children his age, Paul proposed he start one. He named the group SWEET “Siblings Who Escape for Evenings Together” and advertised in the Autism community, and we soon had a group that met for activities. Paul also helped fundraise for the Autism Society. His grandmother crocheted snowflake ornaments and I organized a snowflake sales fund-raiser for the Ottawa Chapter. Paul took the initiative to go door-to-door to help out with this project, which raised over $900.00. When Paul was 12, he attended a day camp at Little Ray’s Reptile Zoo, and a child with ASD was enrolled. The counselors asked Paul if he would be the child’s “buddy”, as Paul understood the child and was a willing helper. The counselors said they could not have managed without Paul’s help. When Paul was 13 and 14, he worked as a relief worker for a family with a son with Autism. He did an amazing job and was a great help to that family.
Paul wrote a speech about Autism in Grade 6, was selected to represent his class in the school competition, and then invited to give his speech to teachers to help the staff better understand Autism. Tommy was attending Paul’s school that year, and although our wish was that Tommy integrate, attempts were unsuccessful. Tommy was more successful in segregated classrooms for high need students with Autism. Tommy is an explorative, hyperactive, determined child who remained non-verbal until the age of 7. His behavior is very challenging due to anxiety, self-injury, aggression, and safety issues. We have continued to be an active family, and Paul has been a huge source of support in our family in terms of helping with his brother’s needs. Family activities and travel have been difficult for Paul. Not only did he not have a “typical” sibling with whom to share games and conversation, he also was affected by the extraordinary limitations that we often experienced due to Tommy’s Autism. Paul’s adventurous spirit and sense of humor helped him to remain upbeat and positive at very difficult times. When Tommy was 5, we travelled to California seeking ABA therapy, which was not available in Ontario. Paul was only 7, and yet he helped us enormously, watching Tommy and being exceedingly cooperative whenever we were experiencing difficulty. We attempted to go to Disneyland as a family, but Tommy could not cope with the crowds and over stimulation, and within an hour of arriving we needed to leave because Tommy was having a breakdown. Paul accepted this without complaint, and we travelled back two hours to where we were staying. Paul and I returned later that day to use our tickets and spend the evening at Disneyland without his brother or father, which, although joyous because we were at Disneyland, was also a sad moment as a family. I remember Paul saying that he sure wished Tommy were there to enjoy the fireworks display with us at the end of the day. He has always wished that Tommy could participate fully in everything that he could. Later, when Paul was 12 and Tommy was 10, we traveled across Canada, camping as we made our way to visit relatives living in Western Canada. Paul and his father would work together to set up the trailer, while I watched Tommy for safety reasons. Paul often helped also by watching Tommy while we showered, etc, always helping us to keep tabs on Tommy’s safety. Although we did not ask it of him, he chose a helper role readily and willingly.
We provided Paul with his own cell phone at age 10 because he was such a help to us at times when Tommy went missing momentarily. That way, we all had cell phones and could keep in touch with each other as we searched. Paul’s ability to help us in such situations was remarkable and well beyond his years. Paul has always been at ease around Tommy, always able to reassure him, help keep him calm and safe, and cheer him or make him laugh. They have always play wrestled like “normal” brothers, and one thing they have in common is their physical strength and athleticism. When Tommy and Paul were 10 and 12 years old, Tommy expressed an interest in horse riding but there were no Therapeutic Riding organizations able to take him at that time. However, Paul happily attended private riding lessons with Tommy at a farm we found willing to accept Tommy. It was so helpful to Tommy that Paul was participating as well. More recently, Tommy was able to fully experience and enjoy the Ariel Adventure course at Camp Fortune with Paul as his helper for both safety and understanding the procedures and rules. At the peak of his excitement, Tommy exclaimed from high in the trees “I love “hanging out” with you Paul!”
Paul’s passion for animals began in his preschool years. Paul wanted a pet more than anything, but no matter what small pet we tried, Tommy’s curiosity and interest in the animals, combined with his lack of understanding and Autism, posed problems. Hamsters were set loose, budgies set free out of windows, etc. As Tommy’s safety was such a huge concern, and we applied for an Autism Service Dog when he was 7. National Service Dogs had had very little funding then, and said because we lived in Ottawa it would be a very long wait. We then decided to get a Lab puppy from a local breeder as a family dog. Paul was thrilled and picked out a puppy, naming her Sara. National Service Dogs later offered us the option to send Sara to them for 6 months of training as Tommy’s service dog. Paul offered to give the puppy he had chosen to Tommy as his service dog, a huge sacrifice on Paul’s part as a gift to Tommy. Once Sara returned as a fully trained service dog, Paul was expected to remain relatively aloof towards her to increase her bonding with Tommy. Paul then began coming up with new ideas for “Tommy friendly” small pets, and after some research he chose a hedgehog. His theory was that since hedgehogs roll into a ball and their prickles protect them when threatened, this would keep Tommy at bay! It seemed a good plan, until Tommy decided the hedgehog should go swimming in the sink, and we found the poor hedgehog struggling and Paul decided to give the hedgehog back to the breeder. Paul continued on his mission to own a pet, at one point managing to raise hamster babies unbeknownst to Tommy, hidden in a cupboard so that Tommy would not discover or disturb them.
By age 10, Paul was volunteering at the Wild Bird Care Center in Ottawa, and at Little Ray’s Reptile Zoo. Even at this young age, he was a very helpful volunteer at these organizations. He soon adopted his first reptile, a corn snake. Although Tommy loves snakes and was excited to have one in the house, Paul successfully kept it and eventually acquired quite a collection of various reptiles. Over the years and with Paul’s patience, Tommy has grown to be trustworthy and able to help care for them. The door to Paul’s bedroom used to be kept locked to give him privacy from his brother and protection of his precious things, but now Tommy is an integral part of Paul’s “home zoo”, and has gained a sense of pride and is very keen to help out. Tommy has learned a great deal about science and animals because of his brother’s extraordinary interests. Paul is now a paid employee of Little Ray’s Reptile Zoo, working as a Wildlife Educator in the community giving educational shows with live reptiles. He plans to study Biology with a major in Zoology this fall at University of Guelph. This winter, he spent three months in Ecuador working as a Wildlife Volunteer in the Amazon jungle for an organization called Global Vision International.
Paul is a very accomplished person for his age, and has overcome many of his own personal challenges. He has been identified as both gifted and learning disabled. In spite of being very bright, he has struggled academically with reading and writing. He has worked very hard in school to overcome his learning disability and has achieved good marks, and yet his marks are not the excellent marks they would be were they a true reflection of his actual potential and abilities. His true giftedness is best seen in his work at the zoo and in other settings. For example, in his volunteer work in Ecuador, he was selected as an intern due his enthusiasm and passion for the research work, and his amazing capacity to learn new information about the animals they were studying. Another challenge he has overcome is that his learning disability also resulted in a great deal of school related anxiety and depression. He worked hard to overcome these problems, and has never been deterred by the adversity of his learning disability or by the challenges of having a brother with Autism. He is a remarkable young man with a bright future and career ahead of him, and with an extraordinary compassion for those individuals in society who are different or in need of support. Being Tommy’s brother is a part of who Paul is and will become, and his commitment to helping animals and the environment comes from a place inside him of great caring and concern for the world around him. I’m proud to be his mother, and honored to have been witness to how he has risen to the challenges of having a brother like Tommy, how he has embraced the experience from the beginning, and grown into an accepting and compassionate person. Paul often says that one day when he is doing research as a Field Zoologist, he will hire Tommy to work for him, as he will never find anyone with greater stamina and strength for hiking and carrying equipment, or more fearless (or able to climb the nearest tree if needed!) in the study of snakes and other animals. Paul understands how to see a person’s abilities, and he sees what Tommy is capable of rather than what he is unable to do. Tommy has been blessed to have Paul as his brother. He looks up to Paul, and is proud and excited to have a brother who works at the zoo, and who traveled to the jungle. He accepts that Paul is a busy guy who comes and goes from home, and is always excited to see Paul when he gets home from his many adventures. I cannot imagine Tommy’s life without Paul. He is a truly incredible sibling to Tommy. I know that it would mean a great deal to Paul to receive this scholarship in recognition of his contributions to Tommy’s welfare.
Thank you for taking the time to read this letter.”