Are there recreational programs for children with autism?

First off -- there need to be more youth programs in general. 
But, the greatest lack is -- programs for children and adults with special needs. 

It’s one of the biggest problems for parents.  We look for programs, but we can’t find them.

The programs that do exist are usually started by parents and run by parents on a volunteer basis.  There is a lack of sustainability. To expand recreational opportunities, we need different sources of funding so that parents of children and adults with special needs are not required to start, manage and run all these programs.

Why do children with autism need special programs?

The worst thing for an autistic child is idle or unstructured time.  A lot of parents end up keeping their autistic child at home because they can’t find a program that adapts to the needs of their child.

Recreational programs are social mechanisms for individuals with autism.  We [the parents of children and adults with autism] fight to get them to be able to relate to the rest of the world.  Recreational programs are part of their therapy.

Tell me about your son Adam.

Adam is 8.  He is severely autistic, without any expressive language, although he has good receptive language skills.   He understands a lot.   He communicates through picture symbols, or he takes you to what he wants.  The world is frustrating for him at times because of his inability to speak; he has feeding and sensory issues as well.  He’s sensitive to noises and to certain kinds of touch.

What recreational and social programs do exist for children with autism?

Most of them are started by parents.  Parents like Jackie Ceonzo take the initiative. 

But when a program is created by a parent with a special needs child or adult and the parent has problems in his or her personal life, the program can fall apart.  The program needs to stand on its own and the pressure for its sustainability should not fall on parents solely. 

Let me give you an example.  We took Adam to swimming classes that were supposed to be for children with special needs.  They had the pool open with a couple of very nice, but untrained volunteers in attendance.  You had to be in the water with your child.  For me, that’s very frustrating.  That’s babysitting, not a program.

What do you think about what Jackie Ceonzo is doing with SNACK?

When I hear about programs like SNACK [with a high staff-to-child ratio that does not rely on parents], that’s wonderful.

She [Ceonzo] is taking a huge risk.  You have to understand – if she’s invested $250,000 in SNACK, it means she could not find an existing program that was appropriate for her son, even for that amount of money. She felt compelled to create one. I admire her a great deal.

To make changes you have to become public about your private life.  It’s difficult, but it must be done for change to happen. 

Sometimes you feel like – I don’t want to be an advocate today – I just want my child to be part of a program for children with special needs, and I want him to enjoy himself.

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