"A Mother's Wish" appeal to caregivers to work towards a community for individuals with moderate to severe autism

“Who will be there to love and guide my special child

when I am gone?”

My name is Choo Kah Ying. I am a homeschooling mother of Jean-Sebastien Choo (Sebastien) who is moderately autistic with significant delays in language.

Despite all the progress, Sebastien and I have made during the eight years of our homeschooling life, he is still held back in his development by social and cognitive deficits, including occasional bouts of aggression. He will unlikely achieve independent functioning in the mainstream world.

Nonetheless, Sebastien has still grown up to become a dynamic young man who can engage in independent learning and take care of the household. He is also passionate about life with his love of colours (colouring and painting), inline skating, travelling, and music.

Before I pass on, it is my dream to offer Sebastien and others like him a strong and loving community that will engage them with a well-rounded programme and help them to realise their potential, whatever it may be.

This is why I started “A Mother’s Wish” campaign in Jan 2013…

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The ultimate vision of A Mother’s Wish Pte. Ltd. (AMW) is to create a community that provides year-round subsidised quality activities for individuals with moderate to severe autism (end-users) on a long-term basis. We seek to challenge our end-users to learn and improve themselves by offering a well-rounded and dynamic series of activities in the following areas:

1. ·      Academic Learning
2. ·      Creative Arts
3. ·      Fitness
4. ·      Lifeskills and Vocational Skills

The AMW community is based on a mobile concept: each day, supervised groups of six end-users take public transport to participate in any of the aforementioned activities provided by a network of existing small-scale service providers.

With this approach, the AMW approach seeks to offer a social solution to the long-term challenges of an ever-growing population of individuals with autism in a land-scarce country like Singapore. The current model of service delivery for end-users with autism that often involves the construction of expensive facilities has not kept pace with the rising demand. In addition, the use of public transport will not only cultivate the lifeskills of our end-users, but also promote public awareness and acceptance of individuals with autism.  

[To learn more about AMW, please go to: http://www.awakeningminds.sg/media/motherswish/AMothersWishConcisedescription.pdf]

Last year (Dec 16–20, 2013, 10:00 a.m.–1:30 p.m.), we ran the AMW Inaugural Holiday Programme for one group of six end-users with moderate to severe autism, aged 6 to 19. The AMW fund covered 50% of the costs of the activities, with the families of the end-users paying the remaining 50%. 

For the duration of the holiday programme, I was a witness of the spirit of the AMW community in action. It was pure magic to be among the paid service providers and assistants, caregivers, and volunteers all rallying together to provide an engaging and enriching programme for our end-users.

[To learn more about this holiday programme, please go to: http://www.awakeningminds.sg/a-mothers-wish_dec_2013.html]

Our Activities and How You Can Participate

To progress towards such a community requires a seismic shift in our mindset about how we as a society can support a life of dignity for individuals with moderate to severe autism and their families.

Currently, in Singapore, families are expected to bear the full burden of caring for their loved ones with moderate to severe autism, particularly the youths and adults, at high individual costs.  By working together and pooling our resources, it is possible to identify creative ways for our society to share in the responsibility of caring for individuals with moderate to severe autism.

Caregiving as a group makes the journey far less lonely and challenging.

In our endeavour to change minds and hearts and cultivate a sense of community, we need to be reaching out to everyone: caregivers, service providers, members of the public, and ultimately policymakers.

Here are some of the ways that you as a caregiver can help to advance the cause of AMW for your child.

1. Participate in AMW Holiday Programmes!

The AMW holiday programme, as a small-scale model of our vision, is a vehicle for us to build up the AMW community and get interested parties directly involved. As a caregiver, you can choose to participate at different levels:

·      Enroll your child in the programme and enjoy some respite;

·      Serve as a one-on-one helper to your child and experience caregiving in a group;

·      Care for other end-users, as a volunteer or paid assistant;

·      Run an activity for the group as a service provider; and/or

·      Rent out your home to us as a venue to conduct our activities!

2. Learn more about AMW and tell others about it!

In order for AMW to come true, we need to rally and empower caregivers to come on board and build a strong voice of advocacy for our children. There are many ways that you can do your part to reach out to caregivers:

·      Forward this document with other caregivers;

·      Experience caregiving as a community by organising small “playdates” and activities for you to get to know other families and their children and then talk about AMW; and

·      Invite caregivers for gatherings to learn about AMW: I would be happy to host such meetings and speak about AMW.

3. Help to raise awareness and funds

In 2013, I raised awareness and funds primarily through the sales of Sebastien's paintings (he donates 30% of sales to the fund). Through his paintings, Sebastien has been able to contribute to AMW and challenge people’s stereotypical conceptions of individuals with moderate to severe autism. For our appearance in Episode 8 of “Joy Truck” that featured our story, we received a generous donation from MediaCorps Corporation. At the same time, many viewers in Singapore gained tremendous insight into our autism universe.

If you have any ideas on how we can raise funds and awareness, we can use all the help we can get!

Contact me at choo.kahying@awakeningminds.com.sg!

Be a part of AMW…

for the love of our SPECIAL CHILDREN.