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!

Broken

This hurts and makes me angry. A young man's life was taken away, violently, by his mother and his caregiver. There's nothing that can make the shock any less, or the heartbreak any easier. Nothing can take the horror from the words and mental images. I will never say I agree with what she did.

That being said there are a few things in this article that have to be looked at seriously.


"Spourdalakis had been featured in several Internet videos earlier this year decrying the quality of medical care her son received and the length of time he had been placed in restraints while hospitalized. Alex also was seen in another video as an autism activist asked for help in finding a setting where the teen could be treated without being restrained."

"The teen’s murder followed a string of recent medical problems that saw him repeatedly hospitalized — a situation his 50-year-old mother believed had worsened the autism that already had left him unable to speak and sometimes required him to be physically restrained."

' “So they planned to kill the victim in order to end his perceived suffering,” Assistant State’s Attorney Maureen O’Brien said in court.'

"Their suicide pact never succeeded: Both women took drug overdoses, then locked themselves in the bedroom with the slain teenager. They were found semi-conscious inside the second-floor apartment on Sunday afternoon when Alex’s father and uncle came to check on the teen, prosecutors said as the women appeared in court to face first-degree murder charges".

'A local autism activist who had discussed the teen’s condition earlier this year with Dorothy Spourdalakis said she was stunned by the murder charges.“She seemed to me a caring, loving mother who only wanted what was appropriate for her son. I’m still in shock,” said Mary Kay Betz, executive director of the Autism Society of Illinois.'



These are not necessarily in order. Trust me, I can almost see you wondering what my point is. My point is that she SOUGHT HELP. Before it ever hit this point, she sought help. She didn't suddenly out of the blue grab a knife and butcher her child. She, in her own mind, believed she was saving him because nothing else helped. 

She talked to the executive director of the Autism Society of Illinois. She had him hospitalized. She was featured in videos taking about how bad the care was, how he had been placed in restraints, and was seen asking for more help. 

I've seen posts for the last two days now talking about how she should have asked for help. Directing people to seek help if they feel they have come to that point and I keep getting stuck on the fact that she ASKED for help. Hell, I asked for help all those years ago. You can't get help where there is none.

Does this excuse her? Absolutely not. It doesn't excuse us either. If we want this to stop, we need to provide the services and support families need. 

My brain and my heart are both broken right now. Rest in peace Alex Spourdalakis. I'm so sorry we failed your family.








The quotes above came from this article:
http://www.suntimes.com/news/crime/20696224-418/prosecutors-mother-and-caregiver-planned-for-week-to-kill-autistic-teen.html