Mama's Page

Here's our beginning and neverending journey of a God-given life, filled with hope and challenge, daunted with fears but always... there is an answer, wisdom coming from everywhere. We are blessed!

Ron is a 9-year-old autistic boy. He was diagnosed at the age of 3 at the Hospital for Sick Children and from then on started his journey into the world of autism. The hospital's Children Development Centre (CDC) have made significant efforts in extending assistance to Ron's development program. CDC made recommendations to the Metropolitan Toronto Association for Community Living to send a resource person at home to assist us in creating an individualized training program for Ron. With the knowledge and support of CDC the Hannen Program and Ron's participation in a Nursery School in Toronto, we saw improvement with Ron. We discovered that Ron has a very strong desire to learn.

[Click thumbnails inside the story for larger view of photos]
(Photo: Ron with Nancy Bokma, his Nursery special teacher) Ron went to Bond Street Nursery School in Toronto. A structured program was put in place for him. People involved with him worked as a team which was to our great advantage. CDC then referred us to the Geneva Centre for Autism. With their wide array of experience, their involvement has placed Ron's developmental needs in perspective and context. Unfortunately, the Metropolitan Toronto Association for Community Living, due to cut-backs, stopped their involvement when Ron was ready to enter the Catholic School Board system at age 4.

Ron was enrolled at St. Michael Catholic School in a regular class. Ron adjusted easily in the mainstream setting. He was doing very well and when he was ready to enter Grade One the school told us that Ron would be transferred to another school, in a different placement-- in a special class. We were very afraid for Ron with this persuasion of transfer and we felt very rejected. We took our time making the big decision. We continued our search for other schools and found a different placement at the Holy Name Catholic School.

We went to visit the Holy Name Catholic School. We were given a chance to observe the special class at the new school. We felt good in what we saw. Sometimes change is for the better. We were very impressed with the special class teacher and the other 3 ERW who worked there. Ron had a very successful Grade One in the special class. Ron enjoyed his Grade One experience. There were many integration programs for social and academic purposes. Ron enjoyed the many field trips to the parks, beaches, the zoo, Centre Island and other fun places.

By this time, it seemed there are very few schools downtown accepting students with special needs. We started combing the GTA months before Ron was to finish Grade One. We found a new school ready to open the following year. It has facilities for special needs pupils. Right after Ron finished Grade One, we moved from Toronto to Mississauga where we bought our first house. Just around the corner to our house is the new school. This meant for Ron to be moving to a new school again. At this point Ron had been to 4 schools already. Ron is now going to Fr. Daniel School in Mississauga near where we live. He has a wonderful ERW and with her support Ron is doing very well indeed in the mainstream program. He looks forward going to school everyday. He even likes studying French. We discovered along the way that Ron has an interest in music. We made him take piano lessons. It's sort of an experiment at first and much to our surprise became a huge success. Ron's piano teacher has no experience with autism but with her open-mindedness, understanding and need I say...Patience!.. Ron progressed so fast learning to read and play music pieces.

We are amazed and very proud of Ron's ability to play the piano. We then, enrolled him to a summer school of Music Therapy. Music therapy is the use of music to achieve goals such as cognitive, social, emotional and physical functioning level through the use of the melody, dynamics and rhythm of music. Ron's music therapist utilized techniques such as singing, chanting, improvising, listening and exposing Ron to different musical instruments. The primary goal is to help Ron achieve a whole health of mind, body and spirit. It's such a fun and enjoyable challenge for him.

He attends Music therapy at Express Yourself in Burlington. We believe every child is unique. One therapy may work wonderfully for one child or may have no effect to another. It's always been a trial and error type of thing. We find music therapy to be a very productive way to facilitate self-expression for Ron. It provides a structured multi-sensory experience, too. Besides there is the saying that Music is timeless and soothes the soul. It is simply impossible to predict what life will be for any child with autism when he or she becomes an adult.

One thing for sure, their progress depends largely on the commitment and hard work of their parents and professionals. Advocacy by parents, professionals and organizations is the only guarantee of a better future for all our special needs children. Meanwhile, let us think of positive things rather than negatives when raising our special needs children. Let us not mourn for them but instead let us truly rejoice, for too often we do forget in our day-to-day struggle and frustrations with them that more so than everything else, in raising a child with autism there is also HOPE beyond limitations. by Lucy Adea.

FIVE YEARS AFTER

14th bday

God has been so good that Ron shows a tremendous improvement. Recently, he just graduated from elementary at Fr. Daniel Zanon School in Mississauga. He did very well in school, in spite of his handicap. Although there are still bad times beyond his control, he's still able to act appropriately most of the time. School staff were very supportive, they made it sure Ron will always be in his good behavior. They were very helpful and innovative in handling him. His school mates were all very understanding.

At the same time we keep him busy attending our own support group, Filipino-Canadian Autism Parent Support Group, which somehow filled some of the gap in his social life. (Photo at right:
FCAPSG Choir at practice) The FCAPSG started when 2 parents who attended an autism symposium at the Metro Convention Center. That was in year 1996, both their families met and invited others to meet to form this alliance group. And from then on it grew bigger in number of families living with children with autism. The group's main objective is to help each other cope with difficult situations, share whatever knowledge and experiences encountered in daily living, go places, like Ontario Place, Ontario Science Center, Canada's Wonderland, Cherry beach, parks and Niagara Falls to name a few. We celebrate Valentine's day, Easter Sunday, Halloween and Christmas Time with big parties.

We let these special children feel that they belong, although they're often mistaken as hard headed individuals (which is the usual misconception), they are also part of the total community; that they too have the privilege of enjoying every season of the year that everyone of us are enjoying. We let them feel that they are also "normal" children, special children of God. FCAPSG is supported by Kerry's Places (West Region), since most of the families live in west end, they let us use their centers for us parents to be able to connect to each other. Their utmost generosity has kept the group intact. Their understanding has been the driving force that made our group united.

We are also fortunate to receive funding from the Ontario Trillium Foundation, which we were able to use for our activities for children. We were granted funds to purchase instruments for our choir group. Parents, siblings and kids with autism formed a choral group to share their talents, and give entertainment to others. Ron, on the other hand, has represented the group to other social functions, sharing his talents by performing in various groups, community organizations, both locally and internationally. He performed in a fund raising event at the Autism Society of the Philippines, Laguna Chapter, at Los Baños, Laguna last year. (Photo at right: With his guests after the concert)

Ron has been very close with other kids in the group. It made him more sociable and more aware of his being a kid with a special needs. In spite of the individual member's hectic and busy schedules, the group meets every week to plan for its activities, practice the choral group and sometimes, just for the sake of being reunited and having fun with the other families. With all these support from friends, families and organization, we feel very lucky.

Ron continues to develop his musical talent. After moving to Mississauga, we found it very difficult to continue his piano lessons in downtown Toronto. We decided to enroll him in Merriam School of Music in Oakville. We were very fortunate again to have found another teacher, who, aside from being a concert artist herself, is a very
understanding and excellent teacher. After only a year of being in her class, Ron was accelerated from Level 5 to Level 7. He has been more interested and very enthusiastic in his lessons, not to say that he was given a privilege to use the grand piano in his lesson. He was given a chance to compete with kids in that school, and we are proud to say that he got 3rd place in the last competition

Another source that we are currently receiving is the behavioral therapy from Behavioral Peel Region. They help us on techniques and approach whenever the tantrums and certain behavior occur. With the use of cue cards and some social stories, it brings improvement. We also give appreciation to Reach for the Rainbow, who gives Ron's placement every summer camp. They provide one-on- one support for Ron, too. It was such a great experience for Ron to go on outdoor camp as well as indoor camp.

He also attended summer camp from the ASO (Autism Society of Ontario) Halton group. (Photo at right: Guest performer at a Kerry's Place event) They give him a chance to meet other special needs individual from all walks of life. He has the privilege too to be one at the social group organized by the Geneva Center and Kerry's Place for Autism. This one-on-one social skills he attended made Ron a better person. Not only the children were taught "how-to" skills but the parents and caregivers, as well. We learned a lot form the workshops, seminar, symposiums sponsored by the Geneva Center for Autism and Kerry's Places.

Lastly, Ron has been lucky to have cousins, uncles and aunties, grand-parents and friends from both sides of our families,who are very understanding and caring and always think what is best for Ron. He is such a very lovable son, always have a helping hand to anybody, and a very friendly guy. Though life is not always a bed of roses, there're still a few and never ending ups and downs in our daily lives but we do believe and always think that we are the chosen parents to be the protector, the caregiver of these little angels sent from above. Written by Romeo (Jun) & Lucy (Chie) Adea - From Ron's parents, thank you all so much for your kind interest!

Personal Note: May 22, 2009 (by Dada Lee)

RON, NOW A HUNKY TEENAGER AT 16

Ron with his parents

Hello, I am Dada Lee. I was Ron's live-in caregiver from the start he was diagnosed with autism until his Nursery schooldays. Ron was a beautiful baby one would immediately fall in love with. Taking care of him everyday as an autistic child was a rare challenge, worthwhile and unforgettable life's experience. For me, the most difficult part of my life with Ron during his baby years was my inability to know exactly what I was supposed to be there for him. Because he was different, and I am not his mother, my greatest fear was not knowing if what I would be doing for and with him would be the right thing. I was always very aware with the fact that how I take care of him would shape his future life. I was very uncomfortable knowing that my mistakes could direct Ron's growth as a human being to all the wrong ways. This was a great fear where I needed God's help everyday.

But thanks to the 'special people' like Ron's teachers, assistant teachers and the home-visiting resource teachers and speech therapists, all my fears turned into unrealities and taking care of Ron became a joyful challenge for me and for Ron everyday. Now that Ron is a young adult I have developed new fears for him, for me and for the rest of the world around him. Because I don't live with him anymore and his parents are now carefully and closely supervising his road to adulthood, becoming more self-sufficient and independent, I have lost some of my sense of relating to him. I see him excelling in school and in his music and it becomes easy for me to see and treat him the same way I treat the non-autistic kids.

This weekend we had a family get-together in Niagara Falls, USA. My other grandnephews and nieces who have been in close 'social' relationships with Ron were there. Kids are kids and it is easy to get impatient with them during the normal course of the day while enjoying the family bonding with them during family events.

Ron spent most of this long weekend with his cousins, without his parents, in Darien Lake Theme Park resort in Buffalo, New York. Ron's cousins were taught about why Ron is different and they all have been very understanding and supportive of him during their regular interactions. When the entire family regrouped to a birthday celebration dinner on Sunday, I asked Ron how he'd been away from his mom and dad. He said, "Mama & Papa are away. Where is Mama?" Then he ran looking for his mom. Then, I asked one of his cousins how Ron was with them at the RV and at the park. The reply was: "Okay lang po, pero nakakainis po!" (Ron is okay but he is irritating). (Photo at right, Ron with his 4 cousins at Darien Lake- The QC kids: from left- seated is Christian, Ron, Ryan, Cheenee and injured & chaired Eugene Jerome)

I was struck somehow with that honest-to-goodness reply and made me reflect immediately on how I myself behaved with Ron that weekend. A tinge of sadness overcame me when I realized and remembered I was also very impatient with Ron. As I did find him irritating, too. I have become totally unaware of the 'autism' in Ron as a person. I was treating him exactly the same way I was treating his other non-autistic cousins who could also be equally irritating.

Reality: Ron is different and will remain different all his life. We need to be jolted back to this reality everyday of our lives to remember this so we will continue to learn and know how to support and assist him on this autistic journey to adulthood. This will be an early as well as late wake-up call for us in Ron's family.

I salute from the bottom of my heart Ron's parents for their steadfast and unconditional love and a sacrifice they accept from the deepest corner of their hearts and prevail upon as they now (and forever will) closely supervise Ron's life every moment of the day as he continues to grow older, one day at a time. 'A new day, a new fate!-- a Bulgarian proverb.

Lightening Up, from the Defective Yeti: A duck goes into a bar and asks the bartender, "Got any grapes?" The bartender says, "No. This is a bar and we don't sell grapes." The duck leaves. The next day, the duck goes back to the bar and asks, "Got any grapes?" The bartender says, "I told you yesterday. This is a bar and we don't sell grapes." The following day, the duck returns and asks, "Got any grapes?" The bartender loses it. He grabs the duck by the neck, and yells, "I already told you twice! This is a bar! I don't have any grapes! If you ask me again, I'll nail your beak to the floor!" The next day, the duck goes in the bar and asks, "Got any nails?" The bartender sighs and says, "No, we don't have any nails." The duck says, "Good. Got any grapes?" :-) Till next time! Click my photo should you wish to email me. TY!

Mama'S update: September 2013 to January 2014

This year Ron has completed his 7 years of high school at St. Joan of Ark Catholic Secondary School on Thomas Street in Mississauga (Winston Churchill Meadow branch). Ron is now closely supervised by her mom 24/7 who has retired from her full time job. Ron's special teacher from his high school continues to assist Lucy and Jun in Ron's current transition and finding a placement for him as an adult.

He has started working with supervision during his last 2 years in high school. He worked at Shoppers Drug Mart and at the Old Navy Department Store. Since after graduation he continues to play the piano for the patients at the Seniors nursing home where he also had the chance to work in the Housekeeping Dept, 3 times a week, as a volunteer. He continues to attend to his regular piano lessons under his mentor from the Miriam School of Music in Oakville.

To this date, January 2014, he continues to bond with his former classmate in high school. He connects with his many Facebook friends. He continues to accept invitations to play the piano as a professional pianist. He remains close with his cousins here in Canada and in the Philippines. He has completed his second CD "A Night With Ron" an album of soothing classical piano pieces which was his repertoire at his special 'legacy' concert at the St. Joan of Ark high school's Communications Program. This event occurred in November 2013.

Ron's verbal communications has greatly improved. His streaming conversation is still slow but much more continuous and smooth. He still shows marked difficulty in his social and sexual behavioral relationship. He understands are now more subdued, shorter in length and less often. His doctor has put him on an anti-anxiety medication during his last year in high school. When asked how he feels with the medication now, Ron said: i like it. My medication make my brain stop from too busy all the time.

Resources and a (Video below)

Who will care for children with autism when they're adults? Limited resources and varying needs present a daunting challenge as Ron's parents are discovering.

Who Will Care for Children With Autism When They're Adults?
By Serena Gordon HealthDay Reporter
FRIDAY, Aug. 23, 2013 (HealthDay News) -- The vast majority of youngsters with autism will grow up to be adults with autism.

An estimated one of every 88 children in the United States has an autism spectrum disorder, according to the U.S. Centers for Disease Control and Prevention. That means that 45,000 to 50,000 kids with autism turn 18 each year, says autism researcher Paul Shattuck, from Washington University in St. Louis.

"This is an impending health care or community care crisis," said Dr. Joseph Cubells, director of medical and adult services at the Emory Autism Center at Emory University in Atlanta. "The services that are available vary from state to state, but often the resources just aren't there."

Public schools are required to provide services to people with an autism spectrum disorder until they reach age 22, according to the National Alliance on Mental Illness. After that, the responsibility shifts to the person with autism and family members to find educational or employment opportunities and appropriate living arrangements.

But experts note that a shortage of necessary programs for adults with autism already exists and is likely to worsen as the increasing number of children who are being diagnosed with autism spectrum disorders grow into adults.

One of the biggest challenges in providing services to people with an autism spectrum disorder is that the needs change from person to person.

"We say autism as if it's a single thing, much like we say cancer," Cubells said. "But, within the general category of things we call cancer are brain tumors, lung tumors, pancreatic tumors, and each requires different treatments. Autism is very individual. It varies from one extreme where someone needs custodial care for their entire life to the other extreme where someone is a highly functional, successful person who may be regarded as being a little quirky," he explained.

"There are some common themes," Cubells said, "but there's really nothing that applies to every single person."

Take higher education, for instance. An older child who's on the higher-functioning end of the spectrum may be able to go to college, but that presents challenges as well.

"There's often a substantial mismatch between verbal skills and performance skills," Cubells said. "You can be highly intelligent and able to do complex math and abstract reasoning, but you don't know how to ask someone out for coffee. Having to make friends, schedule meals, and get to class without help can be like hitting a brick wall for a lot of people on the spectrum. I often tell people with Asperger's that they have to learn in words what most people learn intuitively."

He said a college's disability services office could be helpful in some cases, as could peer mentorship programs that pair someone with Asperger syndrome, for instance, with someone of the same age who's learned about the condition.

For those who don't go to college, navigating the world of employment can be a significant challenge. Both Shattuck and Cubells said that while some employers might be understanding, and some might even make certain accommodations, what employers are most concerned with is their bottom line -- making it all the more important for people with an autism spectrum disorder to be placed in jobs that match their skills and interests.

A study done by Shattuck and his colleagues found that people on the autism spectrum are more likely to choose a college major in science, technology or math than people without autism. And, these types of careers may be just the ones where people on the autism spectrum find the most success.

"People on the spectrum can focus on the details," Cubells said. "In jobs that would be hideously boring and tedious to most of us, like jobs where you spend hours alone, having a social deficit can be a real strength." And Shattuck pointed out that people with autism aren't likely to waste work time looking at Facebook or socializing with co-workers.

But the overall picture isn't rosy for adults with autism. "A lot of parents describe the transition to adulthood as like driving over a cliff," Shattuck said.

In another study by Shattuck's team, the researchers found that more than one in three adults on the autism spectrum had no engagement in education or employment for the first six years after high school.

Those who are profoundly affected by autism generally end up staying with their families. Expensive, private options are often available but out of reach for many families. Services for housing options or vocational training are "very hit-and-miss," Cubells said. "There's a tremendous need for training about autism in the helping agencies."

For families with children on the autism spectrum, Shattuck said it's never too soon to start thinking about getting the child ready for the transition to adulthood. He suggested starting a conversation with your child's special education team at school during 8th or 9th grade to allow adequate time to investigate available resources.

"A lot of extra thought has to happen during high school to create a positive transition," Shattuck noted.
SOURCE: http://consumer.healthday.com/images/logo.jpg

ADULT WITH AUTISM

Autism Speaks Adult Services Resources
Adults living with autism often have difficulty finding information about programs and supports that would allow them to live as independently as possible. Autism Speaks Housing and Adult Services initiative will focus on resources that impact all facets of adult life including employment, housing, and post-secondary education. www.autismspeaks.org/family-services/adults

Adult Autism & Employment
A guide for vocational rehabilitation professionals, including a synthesis of existing literature, promising practices, and previously unpublished insights and suggestions from a national expert on autism & employment. A Product of the University of Missouri's TACE Center. www.dps.missouri.edu/Autism.html

APSE: Advancing Employment, Connecting People
APSE is the only national organization with an exclusive focus on integrated employment and career advancement opportunities for individuals with disabilities. Our new initiative, HR Connect, offers consultation services to help businesses reach out to and partner with one of the strongest labor and customer pools in the country: the disability community. APSE has chapters in 35 states and the District of Columbia. Our members come from all 50 states and Puerto Rico, as well as several foreign countries. www.apse.org

The Art of Autism
The Art of Autism is a collaborative project which finds places for artists, poets, authors, and entertainers on the autism spectrum to be seen and heard. We offer educational workshops, art exhibits, poetry readings, book signings, and entertainment events. Our newsletter of opportunities goes out to over 150 artists and poets on the autism spectrum. the-art-of-autism.com

ASPEN: Asperger Syndrome Education Network
ASPEN is a nonprofit organization that provides education, support and advocacy for families and individuals affected with autism spectrum disorders. www.aspennj.org

AUTISM HANGOUT
Autism Hangout is dedicated to bringing timely, relevant news, resources and hope to those affected by autism. AUTISM HANGOUT provides the Autism Community with an online resource that compiles news, knowledge and personal experiences on how best to thrive with autism. www.autismhangout.com

Autism In Love (Video)
A feature length documentary exploring how adults with autism fall in love and manage romantic relationship. Told through personal narratives, the audience is faced with the challenges, triumphs, and the unique human experience of finding and navigating love. www.autisminlove.com