Autism · My world

Charge now! Think later.

Peter Nicolai Arbo – Valkyries

My mother pointed out this letter to the editor in the Oregonian this weekend. 

 Misjudging a meltdown
My child was having a meltdown at a Target store one recent day. A man walked past us, shaking his head. He turned around, stared at us and rolled his eyes. He was probably thinking, “What kind of parent puts up with that terrible behavior?”

Let me tell you what kind of parent I am. I am the mother of a daughter with autism. Stores are a challenge for my daughter. She does her best to “behave” and I do my best to help her cope.

This man saw me attempting to calm a child who was crying and running away. He misjudged the situation.

I will not lock my child away to avoid getting dirty looks from people like him. He made my day more unpleasant, but he will never make me ashamed of my child. He should be ashamed. LISA S. COOK Southeast Portland

We all talked about it for a while.  My mother’s take was interesting; on first glance she said that she really felt for the woman in the letter.  She and my father have been with Rachel when she was having a meltdown.  A particular situation happened in Baskin Robins one day when they had to take her out of the shop because she wanted cake instead of ice-cream and had a complete meltdown.  But, then my mom said she started to feel sorry for the guy too.  Yes, it is awful to have people stare at your child, to see that look of disdain as they turn away smug that they wouldn’t put up with that behavior.  But the reality is they just don’t understand.  They function in a world where autism is something you hear about on the news, or they know that a co-worker or neighbor’s child is autistic and that child doesn’t act-up so horribly.   She felt the letter in the end had been written with the hope that the offending gentleman would read it and be embarrassed by it.

My husband and I are both sympathetic, but our response was more along the lines of “Poor Ms Cook, just wait until her daughter is a little older.  Those rolled-eyed, ‘what a bad parent you must be’ looks are absolutely nothing compared to the looks you get when you have to physically drag your pre-teen out of a public place.”  When you are packing an eleven year old girl out of the mall with her kicking and screaming you are far, far more concerned about what you are going to say to security when they stop you then you are the thoughts of random people staring.  Of course we have to laugh looking back at how many times we have wanted to say something to the people who stare or maybe just melt into the floor because the situation has gotten embarrassing.  So we really do feel for this lady and we hope that her daughter out-grows the tantrums.   Until and unless that happens, really, what can you say – people are going to stare at some point you have to come to terms with it.

Assuming that Ms Cook’s assessment of the man’s thoughts is accurate the title is correct he misjudged a meltdown.  But, in his defense it is pretty easy to do.  Autistic kids don’t look different.  In fact, unless you actually know what to look for (that far away look in the eyes, the repetitive movement, and sometimes very subtle little signs) there is no way to tell.  How do you tell a tantruming four year old who is autistic from a tantruming four year old who isn’t?  I don’t know and I have a good bit of experience with both autistic and non-autistic tantrums.  So I guess personally I am willing, in principle, to cut the random stranger some slack.

Now I say in principle because I happen to have not always exactly lived up to my live and let live philosophy.  Once, when Rachel was about five, we were in a Fred Meyer’s store (sort of like a cross between a Safeway and a Target for those not in the Northwest) and Rachel had a complete meltdown over this ugly, yet expensive, metal Halloween pumpkin decoration that I was not going to buy.  She cried and fell on the floor and was just having an all out tantrum of the first degree.  I was tired, frustrated, embarrassed and this woman with her teenage daughter walked by.  “I never let you act like that when you were that age!” she said in sotto voce designed for me to hear yet giving her the illusion that she was trying to be discrete.  I let her have it.  As in I LET . HER . HAVE . IT.  I turned on her with murder in my eyes and in as controlled and flat and furious a voice as I could manage I said something like, “Oh, yeah lady, well my kid is autistic and you have no bloody idea what you are talking about, I am doing the best I can.  If you would like to get over here and show me how to parent my child better then I do be my guest!  Other wise don’t be such a jackass.” Not my finest moment, I will admit.  I think I scared the woman half to death, she was about a foot shorter than me, a good ten to fifteen years older and not in anywhere near the physical condition I was in.  I probably looked like I was ten seconds or less from beating someone to a bloody pulp and she was the nearest, handy person.  She looked very upset and shocked and stammered, “Oh no, no, I’m really sorry, you are doing really great – really!” 

That is one of those moments in my life that I really am conflicted about.  On one hand I am sort of proud.  I said it and at the time I meant it.  I put the woman in her place, she was being rude and I think I had a valid point.  On the other hand I am also rather shamed by it.  I was embarrassed, stressed, upset and emotionally unhinged at the time – none of that had anything to do with her, it had to do with the situation and it was wrong to take all that out on her the way I did over her ignorant, self congratulatory statement.  I find it amusing that I can feel both emotions simultaneously.  It was definitely a moment where I spoke first and thought second, but sometimes ‘mommy rage’ charges ahead even against our better natures.


Autism · In Prayer

The Carol Race Story: a quick update

Carol Race had a hearing to determine if the pairsh of The Parish of St. Joseph In Bertha, Minn was justified in obtaining a restraining order aginst her for bring her son, Adam, who is 13 and autistic to mass. 

You can read more about the hearing at: In Forum News and at The Minneapolis-St Paul Star Tribune.

You can read more about this story and the other items I have written on autism here.



Autism · Catholic stuff

Thank you

In Mass today I had one of those “God Strikes” moments; it was one of those times where something really normal happens and it completely blows me away because there is some small miracle happening.  Rachel turned to me right as the consecration was beginning and said very clearly and signed “thank you”.   It was really significant because we almost didn’t go to mass this morning.  We had a special Father’s Day breakfast and we were running a little late, Christopher couldn’t find his belt, Josh couldn’t find his shoes, Rachel was really on the edge of being too excited and I had to fill up the car with gas.  We almost didn’t make it out the door.   I am so glad we did.

Rachel just loves mass.  She loves Communion.  I know she was so happy to go, but her being able to communicate that so clearly was really a little miracle.  I love those little mini-miracles.


Autism · My world

The Rest of the Story

 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.


Rachel checks our her new room at her house.


 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

Autism · My world

Life Like a String Pulled Taunt

Rachel in 2005

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

Autism · My world

Support for autistic teen

I have typed that into google many times over the past five years.   I was always hopeful.  It always turned out somewhat dissappointing.  I did it again today.  Lot’s of information from people living on the spectrum.  Those who are obviously high functioning enough to use a computer and type their thoughts and feelings in a coherant manner.  Some of what they say is insightful a great deal of it has about as much to do with my daughter Rachel as if they were talking about a completely normal teen.  My concerns for Rachel aren’t  how to help her be cool, or how should we handle dating but things like what is the process for placing her in an assisted living situation, how do I avoid getting CPS involved in my family’s life if she hurts her sibling — should I even worry about that — could CPS actually help or are they clueless when it comes to special needs?

 Searching again by adding aggression into the search box.  I hoped to up the relevance.  It leaves me wondering again.  Am I alone out here?  I know I am not, I know there are other families dealing with these issues.  Why is it so very difficult to find support? 

Autism · My world

Quiet voices

Daniel Ridgway Knight  The Conversation

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.


Autism · My world

A Note from the Edge of the World

In December of 2004 I sat down and wrote this in one sitting.  I have left it as is except for minor editing for grammar and clarity.  We had begun to see a new psychiatrist and to medicate Rachel for her autism after having been very resistant to that course.  When I wrote this I thought I was at the end of my rope,  but I managed to hang on one full year more before we seriously considered a placement option for Rachel.

 Part two of this is here.


What am I to do with Rachel?

Rachel is my severely autistic 11 year old daughter. She is a mix of love and frustration, anger and joy, gentleness and fits of nearly uncontrollable aggression. She is a nearly constant source of worry at this point. The road thus far with Rachel’s autism has been bumpy and heart wrenching.

At the age of two Rachel was diagnosed as autistic. This was so hard. While I knew something was wrong I don’t think I realized what wrong was going to mean. We enrolled her in early intervention and started working on behavior modification and picture communication systems. Each year her IFEP and then her IEP would set goals, seemingly reachable goals, only to draw short with them. We would find temporary sources of hope Secretin would work, or maybe it would be a dietary change, a new communication system or perhaps a new style of therapy.

Simple joys that other parents experience in course, joys I have experienced with my other children, Rachel simply skipped. The delight of those simple preschool acquisitions learning colors, shapes and animal names was very slow and difficult. Hearing the happy words “I’m three years old” or even “I love you” became dreams lost. Rachel never has and likely never will learn to read independently, she can not speak in complete sentences.

“Milestone” ages, “Critical” ages have come and gone. Starting therapy by age 3, speaking by age 5 and language by age 9 were each pointed out as critically important. We started therapy at two and a half, she was saying words at 5 but not in a seriously communicative way… not to worry we were told there was still hope. By nine it was becoming obvious that those milestones were gone, not coming back and that Rachel’s “severely autistic” was just that – severe.

Since the beginning of the adventure we have dreaded the onset of puberty. The hormones, the physical changes, possible aggression, possible worsening of symptoms frightened us.  We had heard of autistic children becoming physically aggressive as teens.  All the professionals knew this but had little advice to offer about how to avoid it or what to do if we suspected it was developing.  When Rachel would have meltdowns that involved hurting someone they were usually treated as isolated one off incidences.   

This has been my personal nightmare. Few people outside my immediate family know how difficult raising Rachel has been, in reality I think only my husband has a genuine idea of how hard it has been. My parents, his parents look in on our world from the outside. They simultaneously have not seen aspects we hide and yet they see things we do not.

They are not completely aware of how many times we had to wash Rachel’s bedroom walls when she would smear the contents of a soiled diaper on them. They are not completely aware of how viciously she can attack. The screaming fits if the slightest thing doesn’t go her way. They haven’t had to deal directly with the panic when she “elopes” from the house and disappears to be found at a neighbor’s, or even worse running up the street.

At the same time they grieve for us. For how altered our lives are by having to constantly accommodate the fallout from autism. Our home has locks on several cupboards. Not just normal child safety locks, but padlocks. All the exterior doors in our home have double keyed deadbolts to prevent escape and Rachel’s bedroom locks from the outside, her windows are fixed so they can not open wide enough for her to get out through them, the only pieces of furniture in her room are a dresser and a bed, the carpet had to be removed. In ways it is like a small prison at times.

Rachel’s world has shifted over the past year; it has become much smaller. She has always had temper outburst, but with her increase in size and approaching puberty she has gone somewhat out of control at times. Rachel has always enjoyed the mall, but now we can’t risk going. She had a “meltdown” last time we were there where we could hardly control her; she “lost it” because we wouldn’t purchase five books from the books store that we already owned. This year’s pumpkin patch trip was all but a disaster. She wanted a cookie that she couldn’t have and threw herself to the ground crying.

It is one thing to have a five year old on the ground wailing and trashing, or to drag a seven year old from a store in tears, but it is very difficult when the child is 11 and is 80% of your size. Aside from the social discomfort, the stares and hushed comments there is the fact that this young person is totally focused on something, has a higher pain threshold then you and is oblivious to the consequences of their behavior. No danger is seen, no motivation is enough, and their sole focus is on the object of their momentary passion. That book, the cookie, the swimming pool… no amount of argument or reason will dissuade them and your only recourse it to bodily remove them from the situation.

What this means in real terms is we have all but stopped taking Rachel places. She can still manage the zoo and our summer hikes but no more malls, no more pumpkin patch, no more farmers’ market or library. While it is bitter enough that Rachel misses out on these fun things it is made 5 times worse by the fact that her siblings miss them as well.

Her world has also altered in another significant way. Both her violent outbursts and her capacity for causing real hurt have increased significantly. These violent outbursts are at time predictable but more and more they seem to strike out of the blue. Some internal expectation isn’t met and Rachel explodes. She will violently strike out at whoever is the nearest object of her unhappiness. Usually this is an adult, a parent or teacher… but more and more commonly the object of her aggression is simply whoever is closest. This could be a classmate, a sibling or even a pet.

Before the past year Rachel had rarely gone after a younger sibling, perhaps three or four times total. She had in fact always been excessively careful of the smaller children. It was not uncommon to see her upon being sent to her room for a “calm down time” stop her blind run, carefully walk around the sibling in the way, and then continue on. Recently she has completely reversed this going out of her way to push over or even pinch a little one. Now I find myself answering questions like “Why does Rachel hate me? Why is she so mean? Why does she hurt me?” They have learned to avoid her at good times and run from her when they hear her getting agitated.

Attacks against her older sister have become even more brutal. We had to rearrange the seating in our minivan because Ashley was literally being clawed. Her forearm was covered in marks from where Rachel had tore into her whenever we turned a way which was different from the one in which she wanted to go. Most commonly when we would turn toward our home instead of going to McDonald’s even though we rarely went to McDonald’s and we went home every day she for some reason expected us to go to McDonald’s and would become frighteningly agitated when we didn’t. Even rearranging the seating has not provided much relief. Now instead of going after a sibling she will attack the driver. Sometimes she will pinch other times she will actually kick the driver. The disastrous possibilities are obvious but the only other option is to seat her next to a helpless sibling. Needless to say the only time Rachel is in the car now is when it is necessary.

Her world diminishes in size as we are no longer able to control her behavior in a given situation. Our world becomes smaller as well as we are no longer able to do things as a family since Rachel’s behavior is too unpredictable. There has been no real sudden change but rather a small series of accommodations, each one small enough that it is hardly noticed.

Looking back we have always accommodate Rachel. She has in a sense trained us. We can not, and have never really been able to stay in a hotel room with Rachel. The few times we have she was very young, and even then we were absolutely terrified that she would escape. Spending the night with out of town relatives basically means one of us must “keep watch” all night. One of us will be up very late; the other will wake very early. It is exhausting. The only relatively safe overnight location we can get away to is an isolated family cabin.

A family get together is an exercise in endurance. Personally feel very responsible for anything that Rachel “gets into”. I find myself hyper-alert the entire time, constantly physically and mentally checking and rechecking where Rachel is, worrying continuously that she is getting into lipstick, deodorant, sugar or Crisco, that she has broken something, slipped out of the house or has hurt someone when they try to keep her out of something, or if they won’t let her do something she wants, watch the TV like she wants or play on a computer.

Rachel has no concept of physical danger. She will do what she wants when she wants unless she is stopped. This might mean doing things that are relatively safe, but frightening to us and potentially disastrous. This summer, while visiting her grandparents at a resort she left the condo and walked about two blocks to the pool. She walked into the club house and hopped into the water. She was in reality safe enough but it had the potential for real disaster. Not to mention the panic we were thrown into when we discovered her missing.

When she is angry she has no concept of cause and affect. On most occasions when asked to unload the dishwasher Rachel is compliant and will do a very fine job of it. If she is not in the right mood she will throw a fit, which on occasion has included throwing the dishes about the room especially at the ceiling where they are just as likely to come down on here own head as anything else. A broken window in my bedroom presented an irresistible escape route from the house, despite the fact that there were still sharp pieces of glass in the window frame and the large prickly shrubbery in the way.

In spite of these very depressing turns this year there have been some bright spots. Rachel has been so verbal at times; she has expressed a real interest in written language. There have been many times where Rachel has been gentle beyond description and those long awaited words “I love you” (said as “I duhv you”) have been heard. Then there is Mass.

Rachel excels in Mass. She sits nicely, attends to the things around her, she stands and knells, sings and folds her hands to pray, she stretches out her hand to offer complete strangers a hand shake at the sign of peace. Most importantly she patiently waits in line to receive the Eucharist at communion, so reverently, so expectantly. She never reaches for a second host, she never pushes ahead, she always is a model of what a young girl receiving Holy Communion should be, and with the exception that she doesn’t say “Amen” at the reception. It is enough to make me weekly re-believe in miracles. The only way can find to describe it is that God touches Rachel through the Mass in ways that negate the need for language. Mass speaks to Rachel in the soul’s native tongue.

The Roman Mass with its ritual and predictability is something well suited to Rachel’s strengths. Each week it is a nearly identical scene. Remarkably she can easily tolerate changes in Mass, different priests, different music, second collections; special events that swell the attendance at the Mass don’t upset her in the way changes in other venues do. Maybe it is because the changes are within a predictable shell and therefore easier to accommodate. People are accepting of Rachel in our parish. Rachel is not the only special needs child in regular attendance. Our former priest was very accommodating and helpful in making us feel welcome and at home. Now after severeal years those who attend our parish are familiar with the quirks that occasionally manifest themselves from Rachel or another special needs child. It is one place where she is not “out of place” no one stares for long at her at Mass, they have all seen her a hundred times before.

Whatever the reasons may be, most of them probably only know to God and to Rachel Mass works for Rachel. Not to mention how much she loves her donut afterwards.

At home we have begun medication in an attempt to help elevate Rachel’s issues, especially the compulsiveness and the aggression. This has felt like a failure to me on many levels. That magic number of “age nine” has passed. Puberty looms ahead and I am quite honestly so powerless and worried that medication feels like a last desperate pitched battle before the dark forces of autism engulfed our position and we loose Rachel completely. In a way he progress the past year has seemed like her last stand; a spurt of growth in hopes of staving off a blasting winter.

I worry that medication will be no real help and we will be forced to sedate her in order to keep her manageable or send her to live in a group situation where she could be better monitored and where she would not be a danger to herself or us. That is of course my other fear. The fear that one day in a fit of anger over some small thing Rachel will do something that will be a real harm to someone else. That she will throw a plate and hurt herself, she will pick up a knife and hurt her dad, she will kick my shoulder while driving and cause a wreck or that she will severely injure a sibling.

Between living with the constant fear that today will be that tragic day and the horrible sense of loss of Rachel leaving to live elsewhere I am torn. The truth tears at my heart and soul. To send Rachel away feels like giving up on her, selling off any chance she has at a normal life. To keep Rachel here feels like condemning the whole family to a prison complete with the terror of not knowing if Rachel will be sweet or hurtful at any given moment.

In all fairness Rachel’s outbursts, while a daily occurrences are really limited. Most outbursts are not violent and most are very short. The most violent ones only last a few minuets and are not daily occurring only three or four times a week. But they are so frightening and violent when they do occur that I am willing to consider alternate living situations or sedation to avoid them.

That is what feels most like a failure to me. I have burnt out. I have gone beyond what I can understand and what I can endure. In reality this war is already lost. We are just waiting to see what the result of this last battle is in order to settle on the terms of surrender. Rachel is the primary casualty. We loose her either way. Either she is sedated and lost to me in a chemically induced fog or she is sent away. The self loathing that such a realization inevitably brings is unexplainable. If I had only done more when she was younger, if I had been more disciplined, more organized, more prayerful, wealthier, more proactive… if I had been more then I might not be looking at such desperate options now.

My more objective mind says “I am who I am and I did what I could with Rachel within the limits of who I am there is nothing more I could have done” but self-flagellating part of my brain and heart can’t let go so easily. It feels like a failure. I who can not accept failure, I who will not fight a battle I can not win have found myself in a war I couldn’t win from the beginning and yet I couldn’t stand to loose. So instead of reaching out for better resources earlier I have hunkered down behind my little parapet and hoped to somehow make it through. And now I am done. The siege is over and I have no resources left to hang on any longer.  And the worst part of it is that I now can see that the resources I would have needed never have existed.

The deepest reality is that I am done. I can not handle my daughter’s needs and behaviors without much more assistance any longer. I am tired of being hurt by her, embarrassed by her behaviors in public, watching her hurt others, worrying about her running out of the house and into a neighbor’s home to steal cookies or candy from their kitchens or worse taking off and being hurt. I am tired of trying to stay one step ahead of her, out of her way, predicting the unpredictable, wakening suddenly worried that a door has been left unlocked. I am tired of living locked up in my own home because of the overwhelming needs of this one person.

I am in fact angry that I have spent nearly a full third of my life dealing with things you couldn’t pay someone enough to deal with for more than a few months. I am depressed that I have to constantly consider nearly every action in my life in the light of severe autism. I am sad that I can’t take my children camping at a state park or go to an amusement park or even let a dependable sixteen year-old baby-sit for a few hours so my husband and I could go out with my parents. I am worried that no matter what I do it will never ever be anywhere near enough. I can not fix Rachel. I would if I could, but there is no fixing this. Some things are just beyond the control of anyone.

But Rachel, poor Rachel, who can be so sweet and loving, one of the most lovely children I have ever seen. Who enjoys the Aristocats and loves to have her beautiful golden curls brushed and styled. Rachel who is such a delight, who so loves birthday cake and Halloween. She jumps with joy over simple things like cookie dough and Christmas lights. Rachel who will come and ask for hugs and tickles and who wants to snuggle with her Piglet under about fifteen blankets. I can’t fix her and I feel like every week gets more desperate. I will lose her. Puberty is hard enough, autism is cruel the two combined have proven impossible.

When Rachel was diagnosed there seemed to be a world of support. Web sites dedicated to helping parents with autistic children, support from the schools, every where someone telling us how much you needed to get your children into therapy and how much hope there was. Not to mention the cure de jour that would regularly surface to lift up a little unreasonable hope. Where has this all gone? Am I the only defeated parent out there? Is my child the lone casualty – all others miraculously cured we alone still struggle with the most basic of communication and impulse control?

I have seen a total of two articles on-line about residential placement both of them addressing the concerns of parents with adult children with autism. The state resources seem to all be focused on preschool and early elementary resources. Our insurance will not cover treatment for autism after age nine because, I was told, “there is no efficacious treatments after age nine and no cure”. The psychiatrist told us the state of mental health care for children in our state is “dismal”.

I once describe Rachel’s diagnoses with autism as being left in a large fog-enveloped meadow. With no idea where to go or what to do I could only take Rachel’s hand and begin walking. For a long while it seemed as though the fog was lifting, we entered the forest and walked on where the new found path lead us, doing what we were told, fallowing along where “they”, the school, the doctors, the therapists, said to go. Now I feel almost betrayed. I feel like I am standing with Rachel on the edge of a cliff overlooking an ocean of uncertainty. Now instead of seeing nothing I see everything for miles and miles… all of it empty, stormy ocean and sharp rocks and grinding waves. I see everything but a safe way down. I would gladly turn Rachel into a bird, let her fly away to dance on the wind. I would turn her into a sea lion or a dolphin and let her rejoice in the freedom of the water, but I can’t. I have no magic, no map and no way to know what is best. I am left with the savage question… what do I do now and how am I going to live with myself afterward?


Autism · My world

Carol Race launches Adam’s Pew Project

Carol Race has started a project and a website called “Project: Adam’s Pew“.  I assured her last week that I would provide the information about it here.   Yesterday she pled not guilty to violating the restraining order against her which she received when she took her family to mass at The Church of St. Joseph in Bertha, Minn.  Fr Dan Walz had obtained the restraining order on behalf of the parish due to Adam’s behaviors in mass extending from his autism.

She {Carol Race} said mediation with church leaders to settle her dispute is scheduled to start this week. Todd County Attorney Chuck Rasmussen said he hopes the case can be worked out before trial.

Carol seems very hopeful that the mediation will go well.  She said that she has a lot of confidence in the two arbitrators that have come into the situation and that the Diocese will have a representative there.  I believe she said it was the vicar general  which she sees as a good thing.   So do I.  If there is a problem with the priest over-reacting to the situation then having the Dioceses representative will help bring that issue forward and resolve it. 

So please keep the Race family, Adam and their parish in your prayers.  Please pray that all invovled will be able to discuss this issue with open hearts and minds and find a good solution.