Conversation with Jonathan Mooney Part II (show #79)

In the second half of my conversation with Jonathan Mooney, we talk about his great book, The Short Bus, and how many kids and parents chase the concept of “normal” or “fixing” their kids with LD. We also discuss how parents can help kids learn to play some of the “games” of school- like giving teachers exactly what they want, plus a little bit more, along with other ways to be successful. Kids need mentoring, and sometimes parents are always the best mentors, which is where Jonathan’s Project Eye to Eye comes into play.

I also talk about the progress we’re making on raising money for the Ma Chen- Autism School in China Project! Thank you so much for everyone who has donated! We’re running the program through March 22nd, at which time I will wire 100% of the money we’ve raised to Ma Chen, paying any associated costs myself.

I want to take the opportunity to thank CC Chapman for donating $750 he raised during the My Oovoo Day events towards the Ma Chen project. Joseph Jaffe, head of Crayon, an internet marketing firm, and Scott Monty, put together a great project where people could try out the new video conferencing service, Oovoo, by signing up to speak with some of the great “players” in the internet blogging space. In return, Oovoo is donating money to the Susan Rynolds “Frozen peas” fund for breast cancer research. CC Chapman, whose sister is a speech therapist working with autistic children, asked to have half of the money he earned donated to the Ma Chen Project. This means we will have at least $1,500 to send to Ma Chen, helping towards her goal of buying a farm so the autistic children in her school will have a chance at a future, in a society and culture where there is no real societal safety net for people with disabilities.

I’ll be at Podcamp Toronto this weekend if the weather holds, and if you are there, please come say hi!

Also mentioned in the show-

March, 2008 issue of Parent’s Magazine- great article about speech and language delays

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Making a Difference-Ma Chen and Autism in China

Imagine, just for a moment, discovering your only child has autism. Imagine this happens while living in a Country of 1.3 Billion people, where only two state-run schools exist to serve all of the people with autism. You live in a culture where the very existence of autism has only recently been recognized as a disability, and your child’s disability is seen as sign that you, the parent, did not lead a virtuous life. People with disabilities may be able to work in fields, but are generally shut away to avoid a loss of face for the family. What would you do?

What would you do if you were a Mom a continent away, but also realized you could, with a few calls and emails, help this Mom who is struggling against odds you can’t fully imagine?

A week ago, an article in the Wall Street Journal caught my eye- a mother in China, Ma Chen, discovered her daughter had autism. There were only 2 schools in all of China for autistic children. Ma Chen opened an additional school, and is currently hoping to buy a piece of farm land for $10,000, so that the children will have a place to go and something to do after they finish school.

Just like Sally Smith starting the Lab School, or my attempts to help parents and children with learning disabilities through this Podcast and website, Ma Chen is a mother who just doesn’t take no for an answer and is making things happen in China for her daughter and other children with autism.

China is a place where disabilities are often seen as a sign of being a bad parent, even though we know that many of them are genetic disorders. The New England Journal of Medicine reports that there is at least one form of autism caused by a spontaneous “micro deletions and “micro replications” of specific genes. You can read more about it here.

I want to help. By coincidence, one of my childhood friends is the Senior Cultural Attache for the US Department of Agriculture in Beijing, China, so it seemed easy enough to email him and ask if there was any way to verify the story. If we could, I want to try to raise enough money, $10,000 US, to help Ma Chen purchase this farm as a “Mothers to Mothers” way of making the World better for our children. I asked Eric if there was a way to get the money directly to Ma Chen, and also not cause an international incident in the process. Eric is continuing to pursue the matter through diplomatic channels, and to look into whether there can be help offered through the USDA directly as a development project, and is hoping to have more news shortly.

In addition, Ian Johnson, the writer from the Wall Street Journal, has been in contact with their office in Shanghi. He can help us arrange a Western Union transfer directly to Ma Chen and her organization to help her with her school and the purchase of this farm for the children.

I think it is currently “safe” to try to raise funds to help Ma Chen and her school and have confidence we can get the money directly to her.

As a mom of a child with a learning disability, I know how painful it can be, and how much worry it causes. Starting from a sense of something not being right with your child, to finding out what is wrong, to trying to figure what you can do to make it better can be exhausting and a frustrating process. It’s even harder for the parents I know who have autistic children, who don’t know whether their child will be able to hold a job or make a living when they grow up, or what will happen to them after the parents pass away. And that’s here in the US, where we acknowledge autism as a disability. Ma Chen faces challenges dealing with these same issues in China that make all of our very real worries seem insignificant by comparison.

Our goal is to raise $10,000 for Ma Chen, to help her purchase the farm, so these children have a place to go- a sheltered work environment, where people understand them, and a place where they can be productive. This is a tangible way we can collectively help make a lasting difference in the lives of children a continent away, for little more than the cost of a latte.

I’ve started a Chip-in page for this cause at http://ldpodcast.chipin.com/ma-chen-autism-school-in-china. If you are interested in supporting this cause, you can make donations of any size here- for the cost of a latte, we may collectively be able to make a big difference in the lives of children with autism in a place where the parents and children face obstacles it’s hard for us to imagine.

Thank you so much for your consideration- I would not ask if I was not assured we could get the funds directly to Ma Chen and make a difference in the lives of the children.

Whitney Hoffman
The LD Podcast

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