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?


3 thoughts on “A Note from the Edge of the World

  1. So beautifully written. I hear you. I have an autistic three year old, and am constantly wondering about the future… He is making great strides, and I can’t figure out whether he is truly improving, or just changing? I worry about temper tantrums, and the fact that I can baraly compete with his strength NOW, but I also look at him and see a little genius in there. I am not going to give you that “Hang in there” that everyone always says… It may be controversial, but I think it is important to remember that your child has autism – you and your other family members don’t. Consider what is important for the rest of your family, since you really can’t “fix” your child. Is that fair? No. But, despite your best efforts, in some scenarios, EVERYONE loses.

  2. You are a brave and beautiful soul.

    Thank you for your honesty. I have a little girl called Rachel and I will try to remember to pray for your Rachel when I pray for mine.

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