The Autism Society Philippines (ASP) is a national, non-profit organization dedicated to the well-being of persons with autism spectrum disorder. The ASP has been in the forefront of providing services and training to families living with autism.

15 June 2012

Living with Autism, Hope@Home

A Reaction Paper prepared by MBM, mom of 2 toddler boys with Autism
On the 12th National and 2nd Southeast Asian Conference on Autism
April 28-29, 2012 at the Crowne Plaza Manila Galleria



Introduction

From the time our eldest son was diagnosed with Autism, I had been wanting to attend seminars about Autism but circumstances wouldn’t permit until I was given the chance to be one of the participants of the 12th National and 2nd Southeast Asian Conference on Autism last April 28-29, 2012 through the help of Mommy Jeng and Mommy Beth from our ASP-UPCAMP chapter. It was a very interesting and timely topic, “Living with Autism, Hope@Home”, since my main problem is about dealing with Autism at home and in our community. Loads and loads of information were given to us on this 2-day event by various keynote speakers covering the topics about Filipino families’ resiliency during crisis; the Filipino family and Autism; a panel discussion about families’ different journeys at home; the important role of the family in caring for persons with Autism; the possible outcomes across the spectrum; getting tips, information and how she got through the difficulties of having autism, straight from the mouth of the famous Dr. Temple Grandin; the unconditional love shared by siblings; the advocacy of two young men with autism who are on their way to finishing their College degrees; the Community-Based Program and a glimpse of what we want for the Philippines to have as modeled by the commendable programs and support of the Municipality of Carmona, Cavite; and lastly a discussion about experiences and readiness of families when disasters strike our home.

Those two instructive days made up for the time I lost searching for bits of information from the internet or from talks about others’ experiences that I could not decipher nor understand before. I find myself lucky for had it not been because of this conference, I would still be the same naïve mom that I was 2 years ago.

The Conference

When we learned that our eldest had global developmental delay, later on diagnosed with Autism, my world almost shattered. I grieved and deep inside I was bleeding profusely. We immediately sought the help, as advised by the doctor, of an Occupational Therapist. I did not know what to do, I was extremely unequipped and I was in panic. Though it affected the whole family, his dad and our youngest child, it affected me the most. This was just one of the scenarios that the speakers discussed on the first day of the conference.

I agree with Dr. Michael Tan on his description of how resilient the Filipino family is and how the community perceives Autism. Though we claim resiliency as our strength, too much of it also deters us from facing and dealing with Autism in our family. I, for one, became lax after my son’s few months of therapy. I was too dependent on the professionals and I hardly had time to teach my son at home. I became complacent and focused on earning so we could continue his therapies and more. Dr. Tan’s talk was an eye-opener for me, to search more and do more. We need to educate the community as well and tell them “Being different is not being defective”.

I was deeply moved by Dr. Honey Carandang’s discussion about family as a system and the parents being the crucial factors in the child’s development. It made me realize that what I did for my son is just 50% of what I should be giving him, my time and more effort. It made me miss my family and made me feel helpless because, unlike others, my mom and brothers live very far from us and the only ones really helping us raise our kids are our caregivers. Which is why we succumb to their wants in exchange for their service and they cripple us whenever they go on leave.

Hearing the different stories from the moms and a dad and their kids during the panel discussions made me wary of what is yet to come. My sons, now both diagnosed with Autism, may just be showing some manifestations since they are just aged 3 & 2 but I was given a heads up on how to deal with future issues such as friends, depression, regression, schooling, and many more. I also learned that it is important to help our children find their interests and work on it, help and teach them nurture their skills to prepare them for the future. I totally agree with the parents who reminded us to give intervention, share responsibilities, listen to professionals, give time and embrace the family, and most importantly, to never give up hope.
Dra. Lapeña also gave us a fresh perspective on family dynamics and I liked it when she made us rate our own family APGAR (Adaptation, Partnership, Growth, Affection, Resolve/commitment). It made me further realize how I badly needed my extended family’s help which is quite a challenge to us since we live on different parts of the country/globe.
Dr. Alexis Reyes, a well-known Developmental Pediatrician, talked about the study she did on her selected patients. It was very enlightening. Her study showed us good prognosis among persons who were diagnosed with mild to classical autism. It gave me and the other parents in the room HOPE that our loved ones will eventually show some form of recovery of course with the help and support from parents, families, professionals and given the right program or intervention.

The second day of the conference was also full-packed and we were so eagerly waiting for a conversation with two of the most acclaimed professionals in the world who have Autism, Dr. Temple Grandin and Dr. Stephen Shore. It somehow ruined our excitement when the coordinator announced that there was miscommunication and that Dr. Shore may not be able to speak with us. I commend though the initiative of the emcee and Ms. Dang who initiated an impromptu Q&A with Dr. Reyes. It was informative and we were able to hear the different views and problems others are facing that we weren’t aware of. It was one good moment.

One of the things I like the most is the part where we were able to hear Dr. Temple Grandin live via an over-the-internet interview. We were given a 10-minute break to walk outside and the moment we heard Dr. Grandin was online, we literally ran back inside and instantaneously jotted down anything and everything she said. I like it that a prepared list was given to her beforehand but to make it feel more spontaneous, the emcee asked us to write questions that we’d like Dr. Grandin to answer. For me, it was also nice but it evoked various reactions from the participants. Everyone seemed to want their questions relayed and answered. A mom beside me was distracting me as she hurriedly composed a quite lengthy question and she got mad when hers was not read. I could not concentrate on what Dr. Grandin was saying. I think it would’ve been better and more organized if the committee stuck with the list of questions that they forwarded beforehand to Dr. Grandin through email, and that those questions should’ve covered what others are most likely to ask. I understand Dr. Grandin’s limited time and I find her answers and tips very practical. I was reminded of things that we somehow disregard in our quest to find fast and effective services and programs for our loved ones with Autism.

On the discussion about the effect of Autism among siblings, I admire those beautiful women who shared with us their love and other feelings about their brother’s circumstance and the joy of unconditional love it brought them. I admire how they are helping their siblings go through the difficult stages, how they offer service by participating in siblings’ workshops, and how they inspire other siblings in the audience to embrace their family member whole heartedly.

The interview with JR and Ian was also heartwarming as they shared with us their own experiences on their journey towards the future despite having Autism. It was inspiring and made me wish that my sons will also be able to finish schooling and earn a degree despite their condition.

I find Mr. Barney McGlade’s talk about the Community Based Rehabilitation Program interesting as he himself is an interesting speaker but I think I did not learn much because he hurriedly discussed the salient points of his topic because of time constraint.

One of my favorite talks was that of Mayor Dahlia Loyola’s, the Mayor of Carmona Cavite. At first I found it boring as she read her speech, I was expecting the same presentation as the others. Little did I know she had lots of information to share that she needed to read and speak fast to be able to deliver all the information she wanted us to know. It really was a standing ovation not just for Mayor Dahlia but for the municipality of Carmona Cavite as well. They had absolutely the best framework for rehab and educational programs I heard so far from a local government unit. If only I had the power to implement it in our own community, I would’ve set an appointment with her. I think that was one of the highlights of the second day of the conference as well.

The last discussion was about disasters at home, how some families managed to survive bringing along with them their sons or daughters with Autism. It is quite a challenge taking these kids out on a stormy and destructible environment. Pointers were also given to us by Mr. Mark Padil. His best advice was to suit up, be informed and be ready. I agree with readiness but I don’t think everyone will be able to gear up considering the financial constraints which a large portion of the families with Autism are facing because of expensive therapies and schooling. Definitely a plan is very important.

Conclusion

My very first Autism conference overwhelmed me. I’ve gained vast knowledge and pointers in rearing a child with autism and managing autism at home. I’ve met outstanding parents, made new friends and how I wish I could be like them. Attending this conference has made me realize how much my sons need me. The dilemma of giving my time to them vs the advice of seeking (and keeping) professional help makes me more confused. But what is important is I am keeping with me the knowledge I learned and apply it to my kids. I still believe what others say, that the road will get clearer as we go on and God will lead us through it. Attending this conference has been one of the best decisions I’ve had. My gratitude for the support of my ASP UP-CAMP chapter, had it not been for them I wouldn’t be able to attend this remarkable conference.

0 comments:

Post a Comment

 
Design by Free WordPress Themes | Bloggerized by Lasantha - Premium Blogger Themes | Sweet Tomatoes Printable Coupons