Summer Camps

Summer camps offer a fun yet challenging structured environment for our children. And more so, for our routine-oriented children with autism, summer camp is an essential school extension, an enjoyable learning environment.

But summer camps for children with special needs can be very expensive. Usually, the fees are higher than for regular campers. Plus, the family is responsible for providing, training and paying a worker to be with their child the whole time the child is at camp. In total, a child with special needs is charged twice the fee of a typical child. Sure, there are organizations who can assist in securing a worker, or subsidize the camp fees, but their waiting list could be extremely long. Gord was on a four-year waiting list; by the time his turn came up, he could not qualify anymore as he had reached the age limit. (That sounds like a propaganda; provide a program that doesn’t work.)

Unless the parents can provide a similar challenging, supervised environment for their children, a do-it-yourself summer program is also an option.

Initially, Gord had always attended the summer camp program for children with autism and special needs. It must have been when he was about thirteen years old when he realized that there are different functioning levels of children with autism. He became conscious of his ‘special needs’ which he recognized were not exactly the same ‘special needs’ as those of the other campers. He knew he was different from them but he was not also like the other typical kids. He started to reflect on his individuality, and where and how his abilities and capabilities fit within the umbrella of his ‘special needs’. He wanted something, he didn’t know what. For now, for sure, he did not want to go back to the same camp for special needs for children. And, I don’t blame him.

In preparation for last year’s summer, we faced the challenge of looking for a suitable summer camp for him. He wanted to be with typically developing children who would be his positive role models. But, he could not just attend a camp for typically developing children. It has to be that camp where precautions at the camp are in place in case he burst his unpredictable violent behaviour attributable to his autism.

Our extensive search led us to the camps offered by McMaster University. They offer a sports fitness camp, wherein the camper chooses three sports from the list, and a Mini-University camp, a camp like school but without the exams and note-taking. They take a minimum number of special needs children who would be integrated with the others. Gord’s camp fee is the same as those for the typically developing child. Now, that’s fair! And to top it all, they provide the worker for Gord, at no extra cost for us. And that’s fabulous! Their university students, who have special interests in working with children while pursuing a related academic program, will be working with children like Gord.

Just based on what we read on their site, Gord found this camp ideal. He’d do anything to attend this camp; even if that meant that he would be taking their shuttle bus service from a location in our town to the University, his first time to be in a bus with other children/ strangers without special needs.

After four weeks of summer camp at McMaster U, we saw a more matured Gordon. Though we kept that observation to ourselves but the same was echoed by school staff come Fall. They saw an independent and confident boy yet still has a soft heart for children who are not as high functioning as he is. On his first day of school, he was surprise to see a familiar face; his teacher was one of his workers at camp. Thanks McMaster U’ summer program’s directors, counsellors and other workers. Please continue to your fees for special needs children the same as those of the other children.

He had a wonderful time last year, that he made sure he could make it to Mc’s camp again this year. (and that’ll be the topic in the next blog.)

Check the university and college in your area for children's program. They could offer something for your children with special needs.

Thank you, Eunice

In sharing with you the challenges and the crossroads we’ve encountered in our autism adventure, I could just relate my story in a chronological order. But, for now, please allow me to digress from that order.

I have not really been a follower of the Kennedy family. And so, I thought the passing of Eunice Kennedy Shriver is just like the passing of any lesser-known Kennedy family member who I care or know very little about. The announcement of her death did not have as much impact on me as the recent deaths of Michael Jackson and Farrah Fawcett, icons I grew up with.

But after reading her life contributions, I’ve gotten to know a person I now feel very, very much indebted to her.

Raised during the times when children with disabilities were hidden from the public view, she pioneered the efforts that these children should be given the same rights as any citizen, treated with respect and dignity, and afforded the special education program like any citizen. Her efforts eventually led to the creation of Special Olympics in the early sixties.

My family and I can testify that our Gordon has immensely benefited from Special Olympics. Special Olympics treats Gord with respect; that despite his disability, he has the ability to do ‘it’. It has provided him a sense of belongingness where he feels secure and safe. He has grown from that boy who used to love his corner of the world, preoccupied with a spinning object to the competitive boy who believes that with hard work he can cross his finish line. Special Olympics has raised him to be that mature, confident and independent teen that he has turned out to be.

Thank you, Eunice. It’s been said that the world will never be the same without you. Thank you for making this world a richer place to live in. Your undying efforts have enriched and improved the lives of many individuals with disabilities. You have inspired our sons and daughters and their families.

We mourn your passing. God celebrates your arrival.

Early Signs of Autism

Can you spot anything odd about the baby in these photos?

That baby is Gord. In the following months after these photos were taken, he started to inch away from us. It must have be quite gradual as we didn’t notice anything peculiar in his behavior until we saw what we now would consider his early signs of autism.

Kids naturally gravitate to my father. And in this photo on the right. my father is seen showing Gordon some tricks. This photo may be one of the last ones we were able to capture where we could see Gordon’s attention to something shown to him. After then, his attention was close to none, we thought he was deaf.

After a year old, when he started taking solid food, cereals and milk were favorite breakfast meal. Until one morning, he quickly swooped up the solid cereals in his bowl before I could pour milk into his bowl. He shoved off my hand to stop me from pouring milk. As I continued to pour milk, he grabbed the bowl and threw it to the floor. The action came very quick, I could not stop him. He preferred his plain dry cereals. But why? It was the same reaction when I would pour milk into his glass. After several broken glasses and bowls, I then realized that in his non verbal ways, he was communicating to us… that he could not take milk. Knowing what I know now, I’d say - what a smart boy! He was able to associate the milk with the odd feeling he was experiencing at that time.

My ADVICE : If your child refuses something, especially if it is something he had gotten used to, allow him. Specifically, stop the milk and other milk products. The internet has a plethora of discussions on the association of milk and autism. One research paper also claims that we are already taking in enough calcium in other foods. If you’re really concerned of your child’s calcium intake, consider calcium chews, or digestive enzymes such as , LactAid tablets.

At first, my friend didn’t heed to this advice seeing how much her son loved milk and ice cream. But, after a day of trial, she noticed a big difference in her son – no tantrums. She now recalled that roughly 2 hours after a milk intake, her son would go on tantrum.

Some of his early signs we observed at that time were:
- he preferred to be by himself,
- he would not respond when to his name,
- he was always steering any round object in sight, from a penny to a plate,
- he would stare at any spinning object like the ceiling fan,
- at three yearsold, he had no language; he just babbled the whole time,
- he would not imitate to words; he would, however, imitate humming intonations,
- at four years old, he refused to be toilet trained; he could tolerate dirty diapers,
- he would wake up in the middle of the night, and would babble loud enough to wake us up in the next room and with such expression, like that of political candidate delivering his campaign speech.

Undoubtedly, the boy in the photos above has changed.

Mercury Rising and Autism

In 1998, I saw the action thriller, Mercury Rising. Although this movie received some negative reviews and low ratings, it is one of the movies that made quite a lasting impression to me. From that movie, my take-away item is how to raise my son, Gordon to be like Simon.

In the movie, Simon is a nine year old boy with autism. His life is quite structured. Upon coming home, he changes, grabs some cookies from the jar, and fixes himself toast for snacks. Then, he goes to his room and ‘plays’ on the computer. In one computer game, he accidentally cracked a cryptic code, called Mercury, created by the National Security Agency. From then on, his life was in danger. In one episode, while on the run, he directed the undercover FBI agent, played by Bruce Willis the way to his home. The agent was naturally amazed that despite his lack of verbal communication, he was very much aware of his environment.

At the time I saw that movie, Gordon was four and a half years old. Then, he did not have any form of communication, gestural or verbal. Babbling was the only sound he would do. He kept babbling all day just like how one would whistle to oneself while doing a chore. He was not toilet trained. And he was throwing things, like plates and glasses, when he seemed upset, for reasons we could never understand.

If baby photos are indicators of Gordon’s personality, we could have predicted that he would be a vibrant, bubbly, fun loving kid possessing a great sense of humor. There has not been a single baby photo where he was not interacting with us or responding to the frolics of adult funny faces.

But, the promises of those baby photos started to fade around eighteen months. The babble that started at ten months old did not progress to any distinguishable, even baby, language. He had not learned to call me ‘Mom’ or any of our names and labels. He did not understand ‘NO’. By the time he was three years old, all drinking glasses were shattered to pieces from the throwing he would do. Even Corelle plates’cracked pieces, that merchants vowed are unbreakable, became a common sight on our kitchen tiles.

At our repeated insistence to our family doctor, he finally referred us to child psychiatrist. It took the child psychiatrist less than a fifteen minutes to pronounce the ‘autism’ sentence. And in his nonchalant manner, he hastily recommended that Gordon see a speech therapist, behavior therapist and attend a daycare with a worker from a support agency that offers services for persons with intellectual disabilities. And so, we complied to all of his prescriptions.

After a year and a half being in all these ‘prescribed’ activities, we didn’t see much improvement in Gordon. Nevertheless, I still brought him to the same child psychiatrist, in the hopes that from a professional’s perspective, he would see some progress. Instead, he said, “It doesn’t take a rocket scientist to see him as autistic”.

The next day when I bumped into Gordon’s behavior therapist, I asked if Gord will ever learn to talk or at least call me ‘Mom’. She said, “Quite honestly, you need to brace yourself for reality. Either he will never gain speech or not be able to communicate or if he does, he will speak in a very robotic manner.” And that response, I thought, is what the diagnosis of ‘severe autism’ is all about.

Admittedly, when Gordon got his diagnosis, I didn’t really exercise much due diligence in researching any information about autism. Just like any illness, I thought I could just leave his care in the hands of the capable doctor and the therapists he recommended. I thought I didn’t have to do anything other than provide him a safe and healthy home. I was very much wrong. I’ve come to realize that there are a lot of those professionals who work on their regularly scheduled time merely to earn a living. They do not carry their work with a passion of helping another human being. We are all machines to them; and they run their day like assembly line workers. The professionals we saw then did not care about Gordon’s development or seeing him improve.

The professionals’ prognosis of Gord can be paralleled to declaring that all individuals with autism are destined to be institutionalized. The movie, however, provided me some hope. It was very refreshing to see a non-verbal Simon function independently. It was very encouraging to see that though he didn’t have language, he is very well oriented in any place. To see him comply to the agent’s instructions implied that Simon’s receptive skills is not as limited as his expressive skills.

Maybe too late for a movie review eleven years after it hit the screen. In relation to the story line, the title choice may seem stale. The movie itself may have disappointed viewers who were expecting some pulse-pounding moments on some exciting scenes. My focus in watching the movie is on Simon. With all published works on autism in abundance these days, I often think if the producers were aware of the fact that Mercury has been blamed for the many neurological deficits in children these days. Vaccines contain Thimerasol which is 49% Mercury. ‘Mercury Rising’ therefore denotes the increase of the autism incidence. The movie’s title is very fitting.

Better late than never but here, I thank the directors and actors of the movie for a realistic portrayal of Simon as a boy with autism. I see Simon in Gord, fearless and calm oblivious to the commotion around him. Like Simon, Gord has become independent. As our GPS, ‘Gordon Positioning System’, he is our trusted guide. Unlike Simon, he is verbal and can communicate.

(Guess, this is getting too long for an initial post. I just have so much to share – my experience and thoughts. Stay tuned.)