Tuesday, June 18, 2013

Where do we go from here?

This is a question I run into frequently... either I'm asking it, or someone is asking it of me.

When Beth (and later on, Peter) was diagnosed with an autism spectrum disorder there were plenty of places to go. There's the Autism Resource Center, there are social groups, there are activities, and the online communities for parents of autistic (or children with autism*) children are loud, active, and engaging. They are warm and inviting as long as you manage to stay away from the drama about semantics (autistic vs. with autism).

Truthfully we never really fit there though. I never went to visit the Autism Resource Center (no, really.) I didn't see the point since a lot of Beth's behaviors have never actually fit autism. I didn't want to go somewhere else where we were outcasts. If I felt like being an outcast I could just take her to the grocery store or to a family function. I didn't need to go all the way to the ARC for that.  Years down the road when Peter was diagnosed I figured I had survived this long without it why bother now. You know, my attitude kinda sucked.

When Beth was diagnosed with child onset schizophrenia last year I started seeking out resources for parents of children with childhood mental illness (or parents of mentally ill children*) and discovered that the area I live in has nothing. It straight out doesn't exist for us here. That was a painful realization. There was no one to reach out to on a personal level. Sure, we have our therapists and services but that is almost never the same as coming across another parent who can tell you they've been there and have survived it. I managed to find a few online resources mainly geared toward medication and was ostracized and bashed for refusing to medicate my girl. I did finally find a support group online that is very warm and accepting and parents come from all walks of life and all sides of the great medication debate, but there's still nothing I can find locally.

Earlier this year I took a Human Services class and one of our projects was to come up with a community resource guide. My group handled resources for children. I had a few saved and the others in my group struggled to come up with anything different. Out of curiosity I started looking in other parts of the state  and discovered that we are flanked on both sides by fairly decent services. The problem is that travel time makes those services, support groups, classes, training, and events inconvenient for our families here.

I was chatting with a friend last week who lives closer to Boston and she was discussing services in her area. We were talking about the gross lack of parental support in this area and she was genuinely confused and concerned about the parents here who are left with no support. She had mentioned taking a class called NAMI Basics. I browsed NAMI's website and discovered that I can take this class in the next town over! I'm so excited about this! I've already emailed the instructor who said she was going to forward me the application next week. Its so exciting to see NAMI active in this area!

I also have contacted Family Ties to see about volunteering with their Parent Partner Program. I am waiting on a training to become available with them. They have one tomorrow but it runs at the same time as Beth's concert and I absolutely won't miss that concert so I have to wait for the next one. Hopefully I can start finding ways to bring more services to this area!


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