You can read the final installment of this series here: The rest of the story.
It was one of those crazy afternoons. Rachel wanted a something from the kitchen not finding it she started to get upset. I told her to go to her room, because that is her “safe place” where she could unwind by herself. It was never a problem for Rachel to go to her room, but she was already agitated. There is a particular little set of notes that Rachel hoots when she is winding up to have a meltdown. “Dut da dut da da” high and stressed little notes letting everyone know that she is not able to calm herself down. Then she turned and ran out of the room, through the living room, down the hall and slammed her door. Five year old Hannah appeared from behind the big, blue chair in the living room with two year old Josh right behind her. “Mommy we hid, when Rachel was getting mad I got Josh and we hid.” What could I say? “Good job”, I think was what came out of my mouth as I sat down and for the millionth time wondered what we were going to do.
A year before I had sat down and poured out my heart to my laptop. I was at the end of my rope, I knew I had to do something, but I was unsure what to do. I had two options and neither were options I wanted to pursue. After writing that article about a month passed before things got worse. After dropping Ashley and Christopher off at school I was driving back to the house to wait for Rachel’s bus. Rachel was agitated. I didn’t know what had set her off, but she was really upset. We were stopped at a light and I was looking out the passenger window when she kicked at me. I was able to move and she caught me in the shoulder, but if I had been looking the other way or driving at the time she would have hit me in the head. If we had been on the freeway… The “what ifs” overwhelmed me.
By the time we got home and Rachel’s bus came to take her to school I was shaking. I sat down on the couch and started crying. After a while I thought I had myself together and started making calls. One agency would refer me to another. Everyone I spoke to was kind; they listened to me break down over and over while I tired explain that we couldn’t do this anymore. I couldn’t manage Rachel’s behaviors. But the only thing they could offer was to refer me to someone else.
Bouncing from one group to another I learned a lot. Rachel was too young to be in the adult mental health system. We had too much money for some state programs but not enough to pay for private programs and our insurance wouldn’t cover anything for autism. There were programs for children with mental retardation but Rachel didn’t qualify. Programs for autistic teens, but not that would be able to provide services to someone with behaviors as severe as Rachel’s. There just weren’t services out there that I could find that met our needs. By the end of the day I had called a dozen agencies and support groups and I had two appointments. One appointment was with ARC the other with the Oregon Disability Determination Services.
When Kyle got home we talked. I told him what I had done and what had led up to it that particular day. I can’t imagine anyone more supportive than my husband. Autism can be stressful to the whole family, not to mention the marriage. But Kyle has always been steady and solid. He arranged to come with me to the meeting with DDS. Social services make me nervous. My personal experience with them and the stories I have read and heard from friends made me feel like talking to the state was walking into a dragon’s den. Fortunately Kyle would be there with me.
For the appointment with ARC I was on my own. It was with a woman named Wendy. On Thursday, February 24th I drove downtown for my appointment. I waiting in the tiny waiting room for a little while and finally someone came out to explain that Wendy was tied up with another client across town. I went to the car with a sick feeling as though I would never find anyone who could help. I was just sitting there in the car already exhausted and in the middle of a minor breakdown when Wendy called and asked if I wanted to reschedule or wait. I had nothing else to do so I waited. She came back and we talked, but the best they could offer was respite care. We have respite care, my parents would watch Rachel from time to time, but this was beyond that. We needed something more structured for Rachel than we could provide Rachel needed it. My other children needed a life where they weren’t at risk from Rachel’s behaviors. All this hung together. Something had to change on a somewhat perminate basis. But that is beyond ARC’s services. Besides, ARC is mostly for people with mental retardation anyhow, I really needed to talk to the State Department of Human Services. Bounced again.
Oregon Disability Determination Services is part of the State Department of Human Services. On March first we met with Sheryl. At that time residential placements were based on need, basically to get Rachel placed at all required a crisis placement. We sat down and filled out a small mountain of paper work to see if Rachel qualified. We would be assigned a case worked. We had had a case worker through DDS years before. She had been helpful when we were first coordinating Rachel’s educational services, but since we had good family support we didn’t need them. So we were shelved. Now we needed them and had to get back into the system.
That was when things started to get worrisome. To place Rachel might take years going through the regular channels. The only possible way to get her placed quickly was a crisis placement. We were told if we called in a crisis they would find an “immediate” placement. This would mean Rachel would be out of the home in 24 hours. We wouldn’t have any say in the initial placement, and then they would find a permanent placement where we would have some say over the placement itself.
We started hearing a lot of conflicting information. We were cautioned that a “full blown” crisis intervention placement might involved DHS Child Protection Services and if a placement for Rachel couldn’t immediately be found that the CPS might place our other children instead, the logic being that if Rachel was a danger to them it would be easier to move them to safety than to find a suitable placement for Rachel. We were also told the placement might be far away. If the first available appropriate placement was in Le Grande that is where she would be and there wouldn’t be much we could do about it.
With all this uncertainty hanging over our heads we couldn’t do it. We were quickly approved and assigned a case worker, her name was Kim. She turned out to be fantastic. Summer was coming and she helped arrange for Rachel to spend a week at camp. Things seemed to be settling down a little, I tucked the business cards I had collected into my day-runner and we waited. While the situation was very difficult at times it was also better than risking all the unknowns. We hoped and prayed that Rachel would get better and we hung on as long as we could