June 22, 2009 § 2 Comments
So, yesterday at mass was one of those minor disasters.
We had Rachel with us overnight and everything was going well.
She was a little agitated when Mass started. I am not sure why exactly. But right as Father stepped to the ambo to read the Word Rachel lost it. Completely. So badly that I had to take her out. I couldn’t even control her by myself and Kyle had to help. Ashley stayed in mass with the younger children and we drove Rachel back to her group home, and came back. This is the first time Rachel hasn’t stayed through mass since we started attending Holy Rosary and for at least a year before that.
Once we got Rachel out of the church we sat with her on the steps to give her a chance to calm down. She would alternate between being just sad (which is fine) and being out of control (which means mom or dad get pinched) and then we just gave up on the idea of getting her to come back to mass and decided to drive her back to her house. We got Rachel to the car and she was really, really not happy to be leaving. We decided that it would be safer for everyone if we both went in the car with Rachel. She has “lost it” in the car before and attacked the driver. So having one of us to help control Rachel if she got out of control was important.
I went inside to tell Ashley that we would be gone for a little bit and to just hang out with the little ones at coffee and donuts if we didn’t get back before the end of mass. I am so thankful to have such wonderful children. Josh whispered to me that he would be good and to remember the movie in Rachel’s bag. Rachel had put a movie that we had checked out from the library in her bag on the way out of the house and we had asked the children to help us remember that it was there so she wouldn’t get it back to her house without us noticing. Sarah and Hannah took the whole thing in stride. Ashley reported later that Josh and Sarah were a little rambunctious right after we left, but once she sat between them they were fine.
Rachel was ok in the car. She started saying “Bad… bad! bad!” and crying. Real tears were running down her cheeks. She knows when she has crossed the line, but she doesn’t know how to stop herself before she gets there. Total lack of impulse control in action. When we got to her house she rang the doorbell and asked for a kiss. She wasn’t happy with herself at that point. We weren’t particularly happy with her either – a few more bruises, a scratch and a couple bites later – but Rachel is Rachel and we love her. She got her kisses and hugs and then ran to her room. At least everyone was safe.
We got back just as mass was ending – just in time to join the children for coffee and donuts. Everyone at mass pretty much saw the whole event. I got several hugs and sympathetic inquiries, which makes me all the more thankful for our parish and our friends. Our priest came up and let us know that he had seen everything and had been praying for us. This means a lot. I know that Father Anthony values a reverent mass and for him to come to us and express his understanding was touching. I really hate when Rachel’s behavior affects the mass experience of others. It doesn’t happen very often, but when it does it is distressing. I know how much having a “good mass” can mean to me if I am struggling with something and how comforting a peaceful mass can be. I would hope that Rachel’s behavior wouldn’t ever intrude on that for others, but I know that it would be impossible when she creates such a disturbance for it to not. Which makes me all the more thankful for the prayers and understanding of others who were there.
I know she love mass, and I could see how sad it made her that she had to leave. Hopefully Rachel will be able to participate in the mass next time. She will just be the young lady with the golden curls who makes the occasional non sequitor noise. Thank you to anyone who was there and prayed for Rachel and us. Thank you for your understanding and support.
Of course writing this I realize I never really fulfilled my Sunday obligation. : -/
June 12, 2008 § 1 Comment
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
June 6, 2008 § 11 Comments
When Kyle comes home we spend a few minutes together sharing our days with each other. Yesterday he met a co-worker with a child who is on the autism spectrum. Somehow this came up and they had the chance to talk. Her son is getting older, just approaching puberty and is becoming violent at times with her. He has always had melt-downs, the rare and occasional fit. But as he gets larger and stronger it has become more and more an issue. Her son had pushed her down the stairs breaking her arm.
I think I am ready to talk about this. I think I am ready to say all this, here on this blog, here in semi-anonymity: My daughter is severely autistic and in residential care. My daughter can be violent, she can hurt people, she has hurt me, her dad, her siblings and her care workers. We did the best we could and we still do. You can demonise me if you like, you can say I didn’t try hard enough or do the right things. I know what we went through. I know that we tried everything we could and in the end made the best choice possible. And I know I am not alone, but for a long time I felt like it.
A friend of mine told me about having taken her autistic son to a Dr appointment. While waiting her son began to display minor characteristic behaviors, humming and hooting, repetitive rocking movements. An old woman in the waiting room asked “Oh, you have a disabled one here?”. My friend was at first offended, “yes, yes I do.” she said. The woman leaned over and whispered, “It’s ok dear, I have one too.” The old woman’s son was in his fifties, she would use cloth restraints to tie him to the bed when she left home because if she didn’t he would become stressed and destroy the house.
It is almost like being part of some underground. There are parents of normal kids. They don’t have the foggiest idea what it can be like. There are the parents of autistic kids who don’t exhibit violent behaviors that are in ways worse. Some are sure if you were doing what they are doing then your child wouldn’t have those behaviors and they have no problem telling you that you need to do this or that. Ironically I know that some of those same parents flip when the parent of a normal child makes suggestions about how they should change their parenting and their autistic child will be better. They mean well. I know they do. I know a good many of them would give support and help if they knew how. But they don’t know what to say. Our lives are so far beyond the norm, even for autism.
Other parents of autistic kids can see it coming and they are terrified by it. They know they can’t control their five-year-old’s meltdowns, they hope their child will outgrow them, they have no idea what to do if that doesn’t happen. We parents of autistic children with aggression issues usually don’t talk much. When we find each other, we start sharing stories in hushed voices, at some point realising that the other understands. It is such a relief. Someone who won’t condemn you , someone who knows, who has the been there and understands the pain.
Three years ago I would have given ANYTHING to be able to get online and find one person who understood what we were going through. Anything. We were totally alone. When I first wrote about Rachel on this blog I started seeing searches coming in about autism. The most heartbreaking were the ones I had typed in myself a couple years before: “Autism and aggression”, “Teen agression or violence + autism”, “Residential placement for autistic teens”, “Support autistic teens”, “I have failed my autistic child”. It was like reading Post-Secert or something. Pharses that spoke of someone out there trying to find something, some help, some hope. And to end up here where there was one post about my austic daughter? That seemed so desperate.
I am going to write more on this tomorrow. But for today I just want to let any parent with an autistic child with severe behavior issues stumbling in here to know, you aren’t alone. I have been there too, I still am in ways. I know what it is like to read over an autism forum and close the window because you know that no one will understand. There are things you can do but it isn’t easy. Residential placement can be a very good thing not just for you and your family but also for your autistic child. But it can be emotionally difficult to get to that point and even more difficult to get what you need from the system. But there is hope. It won’t be perfect, it won’t even be normal… but you aren’t alone. There are others of us out here with quiet voices.