Very busy month

We have had a very busy month at Funtastic. It's been a hot month in the midwest and one of the things that we have learned is that therapy and hot gyms don't necessarily work well together. We had to cancel a number of sessions because it was just too hot. Next year we are going to have backup plans for heat. The charity I have been working on is ready to go. We are having meetings scheduled where we are looking for corporate underwriting.

Charitable Organization

It has been a very busy few weeks and I'm finally getting back to writing. This week we started Common Cents for Autism. We are doing this in conjunction with WINGS up in Wisconsin. WINGS gives grants to families with children with autism. Common Cents is going to be both an educational and charitable endeavor. The program is going to raise funds earmarked 100% for WINGS. We are hoping to go into elementary schools, boy scouts, girl scouts, religious groups etc. and read a story about a child with autism. The story is called Charlie's Gift. The children will then receive small cardboard cannisters to fill up with coins. They will have a week to fill the cannisters up and then bring them back to school. The teacher hopefully will be able to organize a class trip to the local bank where the children will deposit the coins in an account for WINGS. We will keep track of the donated amount on our website and the class with the most donations will win some type of a prize. When the money is eventually dispersed to the families I am hoping that the class will receive information regarding to what it is being used for.

Trapped

I am by no means an expert on understanding autism, and what it must be like to live with autism, but I wanted to share an experience I had 35 years ago while working at Perkins School for the Blind and how it might be relevant to what I am doing now. I was working at Perkins as a childcare worker on a work/study program from college. I had never worked with children with special needs and the only training I received was basic sign language. One of the children I took care of was completely deaf and blind. Unless you were able to use finger spelling and actually spell into his hand he had no way of understanding what you were trying to communicate. I learned quickly how to do this and it was truly remarkable to communicate this way. However, very few people are able to finger spell into someone's hand and it was hard for me to imagine what his world must have felt like. Recently I watched a video piece about a young woman with autism who learned how to communicate via a computer. What came out of her was truly astonishing. She wrote about what her body felt like and wished that her dad could spend one day inside her body to understand how difficult and painful it was at times just to get through the day. This reminded me of all the bad movies we have seen where the main character assumes that someone doesn't speak english and proceeds to make all kinds of derogatory comments about their intelligence. I think sometimes we tend to make assumptions about intelligence based on their ability to communicate. It also reminded me of when my father was dying and had slipped into a coma. The doctor and hospice people told us that we should continue to speak to him because there was the possibility that he could still hear us. I feel this same way with children who are non-verbal. We should make every effort to communicate by any means possible.

We received this email this morning. I obviously left the names out.


Hey Kelly,
I just wanted to send you a little note telling you that you were so right! Laura is an awesome therapist. XYZ has improved 100% in only 3 sessions. He is doing the balance beam all by himself now and I got to see him jump into the foam pit all by himself. This was like seeing my baby walk for the first time. It was so exciting to see his progress.

Laura is great with him. She is so compassionate and caring and gives him the encouragement that he needs. He loves to go see her and will give her a big hug.

Hope and Mirrors

With so many unanswered questions regarding the mysteries of autism it is easy for parents to grab hold of anything that offers hope. Recently at the Autism One conference in Chicago it was interesting to see the range of exhibitors and the various remedies that were being offered. One of the things that I was curious about was whether or not these products were measurable in terms of results. The problem parents are facing is the perception, which seems to be accurate, that early intervention is critical when working with children with autism. Therefore, a parent needs to make choices and they need to make them fast. Because most of these products are relatively new there aren't sufficient measurements to determine their effectiveness. All they seem to do is offer hope, and in some cases that hope can be quite expensive.

Not all children have access to the same benefits

When we started our company we had a naive belief that we could provide services for all children no matter what their parents financial situation was. However, we have unfortunately learned the hard way that because of our costs of providing services we can't always do what we intended. We have been able to provide some services by offering small group therapy to those who don't have adequate insurance coverage but that isn't an adequate substitute for one-on-one therapy. The problems we have come across seem to be a direct result of our current economic tsunami and the inadequate coverage provided by services such as medicaid. Due to the rising costs of private health insurance many parents are forced to take catastrophic coverages with high deductibles and high out of pocket costs. Also due to the rise in unemployment many people are losing their coverages altogether. The other consequence of the downturn in the economy is the severe underfunding of agencies and charities.
It is now my belief that I need to start a charitable arm of our organization to provide funding for children who don't have adequate coverage and provide funding for reputable agencies.