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 13, 2008 § 1 Comment
This post is really the third of a series I have written about what we went through in placing our autistic daughter, Rachel, in a residential setting. There first two posts in this series are: A Note From the Edge of the World and Life like a String Pulled Taunt. You can read all that I have written on autism here.
It was a new school year and a new school. Rachel was starting middle school. She was a sixth grader. But the transition, as most transitions with Rachel, was rocky. Her classroom was in a big middle school, quite different from the small neighborhood elementary school. Her teachers were having difficulties with her acting out in class. By the beginning of November it was apparent that this particular placement wouldn’t work for her. We switched to a different program, one designed for children and teens with developmental disabilities coupled with behavioral issues.
We had settled Rachel into her new class. She was having a little bit of a hard time, but this transition was a bit easier. Her behaviors were still highly volatile. If she was very happy she would act out, if she was upset she would act out, just about anything. She was heading into full blown puberty. All the physical changes were starting to take place and the hormones were flowing. The mood swings, the temperament changes were there just like they would be for any child her age, but with Rachel being unable to express herself like a normal girl the frustration was multiplied.
At home we knew that it was only a matter of time before something happened. More and more I was answering questions from my other children about why Rachel was mean, why she was hurtful, why it was ok for her to hit or pinch or kick but not ok for anyone else. Driving Rachel anywhere alone was risky. She had learned that she could get a big reaction by attacking the driver. She had also started hurting herself on occasion. One afternoon in early November she became very agitated in the car and began banging her head back into the seat she managed to pop her jaw. She instantly stopped her tantrum and began crying. When we got home I took her to the pediatrician who looked her over and said that she would be fine, just a little sore. But we were all concerned.
Life was never absolutely normal for us, but it wasn’t all a trip through the third level of hell either. Days would pass where nothing in particular happened. Rachel was more verbal than she had ever been before. She began to show a real interest in words and would have me sit and write words out for her, “cat”, “house” and she love having the names of the family on her lists. “Joshua”, “Hannah”, she liked to have her nails polished and watch TV with Ashley. She loved to have her hair washed and brushed. We were all excited with baby Sarah on the way. The children were looking forward to Christmas.
But, as we knew would eventually happen Rachel crossed the line too far. She was upset in the kitchen, ran into the living room and before I could catch up with her she grabbed Christopher and bit him in the upper arm. It was bad, it hadn’t broken the skin, but that was more luck than anything, it left a huge bruise. We took Christopher to our doctor and she looked at me and said “If this had been you or Kyle I would be on the phone to child protective services.” It was a nightmare. We had no option left; we had to make the call.
We called our social worker Kim, we told her that we were going to have to go for a crisis placement. Now you might remember that almost a year before we were told that crisis placement meant no choice, 24 hours or less and the child was out of the home with other frightening possibilities on top of that. But the second we actually made the call the scenario was different. I am not sure what happened. The state didn’t place Rachel in a crisis placement, but they did start looking for a out-of-home placement for her. We were told it could take a few days or a few months but probably about three weeks. It took almost two months to find a placement that would work.
The options broke down into two main categories: foster-care or a residential group home. We were very nervous about the foster home option. One of the things we hoped for Rachel was more structure than a normal home could naturally provide and her elopement issues and unpredictability worried us in a home setting. Finally Kim called very excited. A place had opened up in a group home for teens, in Portland, they would be able to meet her needs, and Rachel would be close to home. It looked like a great fit.
We visited the home, talked to the staff and the managing company staff, filled out more and more paper work. Everything worked out. The week after Sarah was born Rachel moved in to her house. It is a tidy ranch in a good neighborhood; the back yard is surrounded by a tall cedar fence and Rachel has her own room. It is home to five teens when Rachel moved in she was the youngest, and one of two girls. Her bedroom was painted pink, with Princess Stickers on the walls. We had several meetings where plans were made for Rachel’s care and happiness. The things she liked and the things she didn’t were taken into consideration. Each week her activates are planned, she can go bowling, shopping, even horseback riding. Support staff comes with her to enable her to manage these things.
At home we have found that not being solely responsible for Rachel twenty-four hours a day seven days a week, week in and week out had allowed us to be more focused on Rachel when she is home. We aren’t’ constantly worn down. We have been able to come out of the “bunker” mentality and live. But it has been a slow process. Dr Turner told us that it would take at least a year for us to decompress as a family. He said at first we wouldn’t change how we lived because those habits that we had adopted to deal with Rachel were pretty entrenched, then we would feel some amount of guilt. We wouldn’t do things as a family and have fun because it would feel wrong not to have Rachel with us even though those things would have been unmanageable with her, like camping or going on vacation. Finally we would adjust to it and find balance.
We also found that we have gone through phases of adjustment with seeing Rachel. At first we were there frequently and brought her home almost every weekend. For a while it seemed like we didn’t see her enough. But now we have found a balance. We try to make sure she is home every other weekend. At first the transitions on the weekend were very hard but now things are easier. Rachel loves coming home, but is happy to go back to her house. The placement has been good for Rachel, good for the other children. It isn’t perfect. There have been small issues with the group home staff from time to time. For a while a big thing was Rachel’s hair, which is naturally full and curly. Rachel has always loved having it brushed and washed, but the house staff would have a horrible time with it and would let it go and it would get tangled horribly. But this issue was addressed and worked out.
Emotionally it was a difficult adjustment. I cried when I took the locks off the kitchen cupboard, but being able to leave the doors open for the first time in the summer was like a dream come true. Christopher had a very difficult time when Rachel first left. He blamed himself. The younger children were in ways glad to see her go, but now they look forward to Rachey days. Rachel had a bit of a hard time the first few weeks. She ran away from the house or staff a few times, but she soon adjusted. I look at it almost like she is at boarding school. We always knew that Rachel would one day be in a group home setting. We hoped that we would be able to place her as a late teen or early twenty. My first husband, Rachel’s father, worked in a group home for adults with developmental disabilities. He had seen how difficult it was for those adults who came in late, when their parents died or were no longer able to care for them. They had such a difficult time compared to those who came in as young adults. We didn’t want to stifle Rachel. We wanted her to be able to leave our home and become as independent an adult as possible. She deserves her own life, her own space and things and friends. We just didn’t expect to have to be doing that at 12 or 13.
Placing Rachel in residential care was the single hardest thing we have ever done, but it has turned out to be one of the best decisions we have ever made
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.
May 21, 2008 § 5 Comments
The Parish of St. Joseph In Bertha, Minn has barred Adam Race from attending mass because of behaviors stemming from his autism. I honestly thought I was done blogging on this yesterday, having also blogged on it the day before, but then I received a heart-felt comment from a priest who knows Carol Race personally and wanted to post his take on the issues. While his additional information hasn’t changed my personal feelings on this story I want to share them with you in a spirit of being fair, and also with the recognition that I do have a horse in this race so to speak and I don’t want my feelings clouding what is right and true.
My latest update on this story is here.
Would those of you who are interested in this story please remember Fr Showers, Carol Race and Adam in your prayers. I know this is a difficult time for all of them. I pray that God blesses them all with peace and fortitude and understanding in discerning what is best for Adam.
Below is Fr. Robert G. Showers comment to my blog post “A little more about Adam Race” followed by my response to him.
Thank you for this posting. I do hope that your anger has subsided. You seemed especially upset that Mrs. Race “spent the day lining up legal help.” I allow myself gently to point out that the pastor and the parish council are the ones who chose to unleash the media storm – they chose to go ahead with a restraining order and themselves reported the fact to the press, knowing full well the circus that would follow. After having been threatened with jail time and with news cameras already in her face, Mrs. Race was well advised to spend the day lining up legal help. The parish had lined up their legal help well in advance.
And she was advised. Mrs. Race took this step on the advice of advocacy groups for the handicapped of which she is an active member.
I know Mrs. Race because we studied theology together. This mom in Minnesota is actually a professional Roman Catholic theologian who studied dogmatic theology under the now Cardinal Archbishop of Vienna, Christoph von Schönborn. Her love for the Church has been constant from her early work on the Catechism of the Catholic Church while she lived in Switzerland to her years as DRE in the Twin Cities to recent years, where she has served her parish in many capacities. She began writing about the place of children, including handicapped children, in the heart of the People of God from way before she could have known that she herself would become the mother of a severely autistic child. As the godfather of one of her children, I have followed this family for many years from my friary here in Scandinavia.
Please believe me, that it pains Mrs. Race a great deal that the Catholic Church is made to look bad. It is true that the parish “offered alternatives” – but all of these so called alternatives were ways to keep Adam out of the church, for example, they offered special Masses just for him in private at home, closed circuit transmissions of the Mass directly to his home – and other fanciful ideas designed to spare people the sight and sounds of a handicapped boy in church.
In my heart, I pray that I am wrong when I suspect that the real issue is fear. Some adults in that parish (including the priest) seem to be afraid of this autistic child, a fear born, it seems, of ignorance and prejudice. I feel like I am reading a novel about the 13th century, but fear of “odd” people strikes deep – in this sense, this truly IS an issue of faith.
I thank you for your insightful and honest comments. You have a good blog here.
Peace and all good,
Fr. Robert G. Showers OFM Conv.
guardian of Consolatrix Afflictorum Friary in Roskilde, Denmark
May 20, 2008 § 2 Comments
Adam Race is the young autistic man in Bertha, Minn.
The Church of St. Joseph in Bertha, Minn., filed a temporary restraining order barring Carol and John Race from bringing their 225-pound son, Adam, to church. An affidavit alleges Adam struck a child during mass, fought efforts to restrain him, pulled an adolescent girl to his lap and revved the engine of someone else’s car. A parish statement said the legal move was a last resort after church leaders tried to accommodate and mediate, but the family refused.
- On Monday, after her court hearing was delayed until early June, Carol Race spent the day lining up legal help and giving interviews to national media.
My latest update on this story is here.
It is funny how quickly thoughs and feelings can change. While I disagree with Carol Race’s actions regaurding the media her own words about her situation are worth more than mine.
If for some odd reason you really want my thoughts on the whole situation they are much better expressed here.
This is difficult and sad on so many levels, but lining up new interviews is not going to resolve the issue for her family. My sense is that the Diocese of St Cloud would have never gone forward with a restraining order without knowing pretty solidly that they had a good case if it goes to court once it was violated. Anyone with half a brain would see that this would be very bad publicity if it got out of hand. All of that together makes me think that the situation in the parish had gotten very bad and the priest had exhausted all options. I pray that this can all work out for the best for Adam, his family and the parish.
(Yes, I have serriously edited this post. I was angry when I first wrote it, not just at Mrs. Race, but also at the media and how they have turned this into a “faith” issue when it is really not.)
January 25, 2008 § 5 Comments
I have a 14 year old daughter who is severely autistic.
Because this sentence is true and yet it is NOT true for every child. There are some, I dare say many autistic children, while they are helped with early intervention and intensive therapy, are not brought up to the level where they can lead “full and active lives”. As a parent of an autistic child I latched on very deeply to the idea that if I did enough Rachel would have a normal life. I was offered more hope than possible every year. Finally the hope hand-outs stopped but not until Rachel was in Jr high.
I think all parents hold onto a certain amount of guilt when it comes to “doing enough” for their children. Everything from baby enrichment classes to SAT prep and sports, and dance, and art, and camp. Homeschool parents get to pick up a special type of guilt being responsible for our childrens’ entire education. We can all look back at our “parent-of-the-year” moments where we over reacted or said the wrong thing. Our childrens’ failures in a very real sense feel like our parenting failures. But with autism there is a deeper sense of failing. When every story about autism published is the miracle that shows an autistic child that with love and dedication the parents where able to find the “cure” and now their child is a happy fully functioning teen or adult. Where did I go wrong? What more could I have done? I have failed my child. My child is not cured the failure is therefore mine.
My daughter is 14 and still severely autistic. Did we not try hard enough? Did we not do enough? If Rachel was dealing with Down’s Syndrome would I be looking at myself in the mirror asking these questions? Probably not, because it is well acknowledged that Down’s is a genetic disorder, there is no miracle cure. But with autism, the causes are so elusive and the hope built up so high that self recrimination becomes very reasonable.
My thought is that as autism is more studied, as the “bubble” of autism ages that we will see many many more cases where early intervention did NOT fix it. Where parents did all they could and still they are looking at the teen years with autism as a very real part of their child’s life. I don’t exactly resent those parents who have found success with early intervention and intensive therapy, but they speak very loudly and the world likes to listen to them. Those of us with sadder stories speak quietly or not at all.
But we need to speak. We need to start speaking to one another and to the media at large. Just as our children needed money and research and acceptance with their diagnoses and early intervention they also need as adults. They need safe housing, they need law enforcement to be trained so that tragedies are avoided. We need laws changed so that our adult autistic children can receive funds for their housing and treatment without parents loosing their parental rights and the right to advocate for their children or make decisions about their lives. These are problems, real problems, they need addressed every bit as much as early treatment.