Archive for Parenting

Support for Parents From the Man Himself

October 11, 2010 Rachel Doctors, Parenting

In his April 7, 1981 New York Times obituary, Dr. Leo Kanner was quoted on his views regarding the psychological profession and the difficulties it poses for parents. The following is an excerpt from the obituary. (You can find the full text here.)

”There is no raid shelter from the verbal bombs that rain on contemporary parents,” Dr. Kanner, who was known in psychiatric circles as the father of child psychology, wrote in a book in 1941.

”At every turn they run up against weird words and phrases which are apt to confuse and scare them no end: Oedipus complex, inferiority complex, maternal rejection, sibling rivalry, conditioned reflex, schizoid personality, repression, regression, blah-blah, blah-blah and more blah-blah.”

The book was ”In Defense of Mothers.” He subtitled it ”How to Bring Up Children in Spite of the More Zealous Psychologists.” In the book he urged mothers ”to regain that common sense which is yours, which has been yours before you allowed yourselves to be intimidated by would-be omniscient totalitarians.”

“Would-be omniscient totalitarians.” I didn’t say it. Dr. Kanner did. So, the next time an expert tells you that he or she can foretell your autistic child’s entire future, or tries to sell you a treatment, or an outlook, or a judgment that seems altogether wrong to you, feel free to quote Dr. Kanner. Especially the part about the “blah-blah, blah-blah and more blah-blah.”

And then go home and enjoy your kid.

© 2010 by Rachel Cohen-Rottenberg

6 comments

Grieving the Dream and Living What Is

October 9, 2010 Rachel Childhood, Communication, Diagnosis, Grieving, Parenting, Sensory Processing Issues, Spectrum Pride, Speech

When I first began delving into the words written by parents of autistic children, I found myself troubled by phrases like “the heartbreak of an autism diagnosis.” At the time, I was just beginning to develop a positive identity as an autistic person, and I felt offended that people would feel heartbroken at having a child like me. At the same time, I recognized that the grief was sincere, and that I couldn’t possibly tell someone that his or her feelings were wrong. I’ve been known to argue with an outlook or an idea, but not with a feeling. Feelings, in my view, are not open to disagreement.

I’ve come to understand the grieving, I think. I’ve come to understand it because, having received a diagnosis at 50, I’ve gone through my own grieving process. And what I’ve come to learn is that my grief is not about being autistic. I don’t feel that it’s unfair to have been born autistic. I don’t feel as though some terrible tragedy has descended upon me in mid-life. I don’t curse my fate and wish I were just like everyone else. I’ve never asked who I might have been were it not for my parents’ abuse, and I have no inclination to ask who I might have been without being autistic. Being autistic is intrinsic to my life experience, to my insight, and to the gifts I bring. The One Above made me just as I am, and I respect that.

And yet, I grieve. I grieve the loss of the person I thought I was—the person who could navigate the world like everyone else, the person who could do anything she wanted if she worked hard enough. I grieve the things that I’ve always wanted to do but am physically unable to do. I grieve the loss of my apparently privileged status as an apparently neurotypical person. In short: I’m grieving what was never there to begin with. I’m grieving an idea of myself and of my place in the world. I am not grieving what is or what was. I am grieving what doesn’t exist and what has never existed, except in my own thoughts.

This understanding came into focus in the days after I met with a woman at a local civil rights organization. She works in the area of disability rights, and I approached her in my role as the leader of the Vermont chapter of the Autistic Self Advocacy Network (ASAN). When we set up the meeting, I told her about my auditory processing condition and about the kinds of accommodations I need—namely, a quiet space and a slow conversational pace. She was quite welcoming and offered to meet anywhere I wanted so that the environment would work. We ended up meeting in her office, which is just five minutes from my house.

In some ways, the two-hour meeting went very well. She was very friendly and very dynamic. I learned that she works as an advocate for parents, attending IEP meetings and helping to protect the rights of children. I learned that she does a great deal of anti-bullying and anti-harassment work, running compliance trainings for schools throughout Vermont. I learned that, as a person of color, she had been through severe racial harassment as a student, and that much of her work is powered by the conviction that no child should ever go through bullying at school.

The downside? She spoke very, very fast and provided a great deal of verbal information. I was able to see, right away, that asking her to slow down would not have worked. I don’t think she would have been able to do it. Her work is very stressful, and she was clearly up to the task, but what made her so good at her work also overwhelmed my auditory processing system. As the meeting progressed, I felt more and more overstimulated, and less and less able to find the words I so badly wanted to say. And because I’ve never seen a nonverbal signal in my life, words were all I had. Without nonverbal shortcuts, the process of listening and speaking became exhausting. I probably should have cut the meeting short, but I wanted so much to make connections with other people working on disability rights that I stayed glued to my chair. Needless to say, I needed a few days after the meeting to get my nervous system back into a state of calm and balance.

Helping advocate for the rights of parents and children, especially bullied, harassed, or otherwise vulnerable parents and children, is something I’ve wanted to do all my life. I have a fire inside me when it comes to injustice, and much of the recovery work I’ve done for 25 years has been aimed at being able to go out there into the world and fight the good fight. I want to go to IEP meetings and be a supportive advocate; I want to be able to walk into any situation and do workshops and trainings. When it comes to making right the wrongs of the world, I’ve got the spirit of a warrior. And yet, no matter how patient, how brave, and how intelligent I am, I can’t make my auditory processing system do what it isn’t made to do. I can’t change, by an act of will, the way I process speech and sound. I can’t see a nonverbal cue, and no amount of explaining is ever going to get me to.

As I’ve looked at what happened at the meeting, the truth has become clear: I am an experienced and conscientious researcher, writer, and editor. I am highly intelligent. I am very sensitive. I am absolutely tenacious. But there is something I cannot do: I cannot implement my work in a chaotic or dysfunctional environment. In the quiet of my own home, I can put together a fact sheet about children’s rights. I can interview people and develop materials on bullying and its impact. I can help to create an anti-harassment workshop. I can gather large amounts of information and organize it in a myriad of ways. I can do the behind-the-scenes work, but I cannot go into the thick of things and be effective.

It’s not that I’m incapable. It’s that I cannot find an environment in which it would work. An IEP meeting is not such an environment. A compliance training is not such an environment. Any situation in which people are under stress, not at their best, and talking at cross-purposes is not such an environment. In those environments, almost by definition, accommodation for my disabilities becomes impossible. After all, if the situation were friendly, functional, and fair, there would be no need for me to be there in the first place.

This realization represents the end of a decades-long dream, and there’s sadness there. I imagine that it’s an emotion similar to what a parent feels upon receiving an autism diagnosis for his or her child; it’s the end of a dream, and there’s sadness there, too. I remember how many years I planned for the birth of my daughter, how many years I dreamed of all the fun we would have, how many times I told myself that I couldn’t determine the future and yet found myself looking forward to a multitude of things. Being autistic, I might have had an easier time with an atypical child than most, because I’ve always been the one who is different. But a typical parent has typical dreams, and there is grief in letting go.

In large part, those dreams have to do with life being safe and welcoming to a child and, as we all know, the world is often not a safe and welcoming place for autistics. I have been bullied, and ignored, and left behind, in many different ways, all my life. And yet, I don’t wish I were different. I wish the world were different. I wish that more people defended the bullied rather than the bullies; I wish that more people took the time to get to know me and find out what a great good friend I am; I wish that more people were sensitive to all the things that autistic people need in order to live our lives with more joy and less fear, more inclusion and less loneliness.

The grief I feel is for what never was and for what has yet to be. It’s not for who I am. And I imagine that, for parents, the grief is for the dreamt-for child and the dreamt-for plans; it’s for the opportunities and the safety and the welcoming that the world does not yet make possible. And it’s absolutely right to grieve that child and those plans and the state of the world as we know it. But grieving all those things is different from grieving that we are autistic. I want to say to parents, “The child who is here does not need to be grieved, any more than I need to be grieved. There will be new dreams, different dreams, dreams that are based on what is real—not on the doomsday prophecies of doctors with God complexes, not on research that barely scratches the surface, but on the child you see in front of you, whose life you are committed to nurturing. That’s the only basis for a dream—your flesh-and-blood child, longing for a way to manifest his or her reason for being in the world.”

Each of us is here for a unique purpose that no other person can ever serve. There is so much to be done. So let us grieve our dreams. Let us carry our grief with dignity. And let us get to work.

© 2010 by Rachel Cohen-Rottenberg

26 comments

My Daughter, The Goalie

October 6, 2010 Rachel Happiness, Parenting

My daughter Ashlynne is a senior in high school and the goalie for her school’s varsity soccer team. Her school requires that all students play a team sport, which is a very good thing, or Ashlynne would never have gotten onto the field. When she started soccer in the seventh grade, she was under five feet tall, and she usually ran away from the ball.

Then, one day, in the ninth grade, Ashlynne began practice by volunteering to guard the goal while other players practiced their shots. One of the coaches noticed that she was playing in a focused and fearless way. In fact, the coach had never seen a kid guard the goal so aggressively. After a little bit of convincing, Ashlynne became a goalie. Now, in the twelth grade, she’s 5’7″ and a team leader. Here are some photos from her first two games this season. (Ashlynne is the one in the black shirt.)































































































































Fun times!

© 2010 by Rachel Cohen-Rottenberg

8 comments

How I Feel About Those Who Want a Cure

September 15, 2010 Rachel Ableism, Aging, Critiques of Autism Theories, Empathy, Marginalization, Parenting

Please be warned: If you’re hoping for an anti-curebie tirade, you won’t find it in this post. Likewise, if you’re hoping I’ll say that autism is a disease that must be eradicated, you also won’t find it in this post. In other words, I feel pretty certain I’m going to disappoint anyone who wants me to pick a side and stay there, but the world is not a black-and-white place, and I’m not going to pretend it is—even if you think that being autistic means that I automatically see everything in black-and-white terms. (And, by the way, if you carry that belief about autistic people, I suggest you take a look at your own black-and-white thinking.)

So, here’s the thing: I’ve been reading fairly widely lately in the world of autistic people and their parents, and to put it mildly, my sensitive soul is in an uproar. I’ve been reading posts by parents who compare autism to cancer. I’ve been reading posts by parents who think that vaccines cause autism. I’ve been reading posts by parents who think that we’re in the midst of an “epidemic” of autism. I’ve been reading posts by parents who want to find a “cure.” As an autistic person, I recoil from these kinds of sentiments, and I feel to the core how damaging and how degrading they are. For me, dealing with the psychological and emotional impact of them is far worse than any challenge that arises from being autistic, by several orders of magnitude.

But I can’t just dismiss these parents as narrow-minded people. Even if some of them fit that description, I can’t dismiss them. They are human beings, after all, and something is driving them—something more than the privilege of defining “normal” and a sense of entitlement to children who fit that definition. As a parent, I think I understand it. It’s fear—not fear of autism per se, but fear of what is going to happen to their children as they grow into adulthood and one day lose their parents. Any parent of a typically abled child knows what I’m talking about: the way you worry, from day one, about how other people will treat your child, about whether the child will be hurt by words or deeds, about what will happen when you watch your child go around the corner alone for the first time, or cross the street alone, or ride a bicycle to the corner store, or go on a date. My daughter is getting ready to leave home and spread her wings, and the only thing that keeps me from going into a raw panic about watching my only child move into a world of unscrupulous, nasty, violent people is that I can say to myself, “I stumbled into life with far less support and far less savvy than she has, and I survived.”

For a parent of a disabled child, the fear of what will happen to the child in adulthood must be immense. Who will be there to help your son or daughter when you are gone? Who will assist with daily living tasks? Who will listen? Who will be kind? Who will be welcoming? Who will love your son or daughter as you do? I am a disabled grownup with the sheer good luck of being financially secure, and still, it’s no picnic out here. It’s damned lonely. It’s damned difficult. It’s a very vulnerable existence to live in a world that doesn’t understand me and that, with some very notable exceptions, doesn’t care to.

Personally, my solution to this unhappy situation is to advocate, advocate, advocate: for services, for accessibility, for accommodations, for respect, for open-mindedness, and for an inclusive society for everyone. My solution is not to find a “cure” that will make all of us alike. The solution to anti-Semitism isn’t to do away with Judaism, the solution to homophobia isn’t to do away with homosexuality, and the solution to a world that not-so-secretly hates autistic people is not to do away with our neurotype. The solution to cruelty based on difference is not to erase difference. It’s to build a just and loving world that treasures difference and treats people with dignity.

But look at the world. Does it look like it’s going to become a just and loving place any time soon? Here in the US, we’ve got an economy that’s a wreck. We’ve got towns that are cutting basic services, like having police officers and firefighters on duty. We’ve got people who have to go to court to get legally mandated services for their disabled kids, bankrupting themselves in the process. We’ve got a society that treats most people badly—a society where you’d better hope like hell you don’t get sick, because if you do, either you won’t have health insurance, or you will be struggling with your insurance company for payment while you’re throwing up from chemotherapy. And amidst all this, you’ve got people living with the panic, every day, of sending their autistic children into this kind of world. I can understand the panic and the vulnerability. I can understand that, when faced with the idea of changing the world versus finding a “cure,” some people believe that finding a “cure” seems the more hopeful option—especially if the “cure” is to get people simply to stop vaccinating their kids. People are more hopeful about the miracles of modern science than they are about the capacity of human beings to treat each other with a shred of dignity.

So, yes, I have empathy for where these parents are coming from. I just wish that these same parents had anything approaching the same level of empathy for me. Instead, when I try to discuss anything, one of two (logically contradictory) things happens:

1. I am ignored because I am not autistic enough. The very fact that I can write, express empathy, give birth, and have a good marriage means that I just don’t know what I’m talking about when it comes to autism—that I’m not like their children, that I have no right to speak about their children’s rights, and that I’m too “high functioning” to get it. These people didn’t see me growing up. They didn’t feel what it felt like. They didn’t see me stumbling from one failed friendship to another. They didn’t see me getting bullied and victimized. They didn’t see all the tears, all the pain, all the hard work, all the loneliness. Of course, if I’d remained a victim, I’d probably get more credibility. Somehow, the fact that I’ve managed to find happiness actually works against me. I’ve made a life for myself without IEPs, without early intervention, without occupational therapy, without social skills classes, and somehow, that means that I’m not really autistic. Instead of having empathy for how hard all that was to do on my own, without any support, people take it as proof that I’m not like their children after all. It’s as though autistic people got created by the DSM and early intervention programs, as though we haven’t been here all along, for generations, for centuries, struggling like crazy to stay safe in a world we don’t really understand and that doesn’t really understand us.

2. I am ignored because I am autistic. I find this dynamic happening on some of the “mom blogs” written by neurotypical mothers of autistic children. It’s just like real life. I show up as a mother, and for a little while, it works. I show up as an autistic, and it’s like I’m not even there. I’ve had it happen over and over: I’ll make a comment on a post, and the blogger will respond to every other comment but mine, no matter how short and sweet and lacking in substance the other comments are. And no, it’s not just a coincidence, and no, I’m not just taking it personally. To quote Laura, my fellow autistic blogger, “I’m an Aspie, not a dumbass.” Interestingly enough, I do not find this dynamic on the “dad blogs” written by neurotypical fathers of autistic kids. In fact, they seem very much to want to hear my point of view, because it gives them insight into their own children.

Now, I know that there are neurotypical moms out there who read my blog for these same insights, and I am not talking about you. I am talking about the women bloggers who exclude me the way that other women have always excluded me: because I’m different, because I don’t engage in small talk, because…who knows why? Why do people exclude autistic adults? Is it too scary to think about the fact that their autistic children will one day be us? If I succeed at anything, it seems, I’m not autistic enough; but if I can’t attain that elusive and illusory goal of becoming indistinguishable from the neurotypical majority, especially as a woman, then I’m instantly devalued for being autistic. My autistic brain will never understand how people paint themselves (and us) into a corner like this, and to tell you the truth, I think that speaks very well of my autistic brain.

So, to all the people looking for a cure in order to render us “normal,” please consider what “normal” means in conversations about autism:

  • It’s “normal” to be told that I’m both not autistic enough and not welcome because I’m autistic.
  • It’s “normal” to exclude me because I don’t think like you and talk like you.
  • It’s “normal” to tell me that I can’t speak on behalf of other autistic people, because I’m not like them, but that neurotypical people can speak on behalf of autistic people, because they know better.
  • It’s “normal” to tell us that if we can speak for ourselves, we can’t be autistic, and that if we can’t speak for ourselves, we must be autistic, and therefore, other people can speak for us.
  • It’s “normal” to forget that autistic people have always been here.
  • It’s “normal” to want to make everyone just like you, without reflecting upon why you want to do that and whether your version of “normal” is something that everyone should aspire to.
  • It’s “normal” to say that your autistic child is the product of defective genes, toxic chemicals, or evil vaccines.
  • It’s “normal” to talk about us as if we’re diseased.
  • It’s “normal” to think that this kind of talk is going to do anything to create a world that is safe for your child.

If you describe your child’s way of being as the result of some sort of defect or toxin, you are not setting up your child to have any dignity or respect. At best, you’re setting up your child to be pitied, and being the object of pity is no defense against bullying, against discrimination, against becoming devalued by people who can’t think outside the “normal” box.

Someday, there will be a “cure” for autism. It will be called “pre-natal screening.” For those who can afford the test and who are willing to abort a child, autism will be a memory. But you will not get rid of us. There are many more people for whom such a test will not be available, and for whom abortion is not an option. Meanwhile, there are (and always will be) living, breathing autistic people whose lives, whose thoughts, and whose experiences are being devalued as some sort of environmental or genetic mistake.

One of those living, breathing autistic people is me. So you’ll excuse me if I’m not in a hurry to emulate your example of “normal,” but it really doesn’t seem that you have my best interests at heart.

© 2010 by Rachel Cohen-Rottenberg

17 comments

Guest Post at Static Vox on Raising Autistic Children

September 9, 2010 Rachel Childhood, Critiques of Autism Theories, Diagnosis, Empathy, Parenting, Spectrum Pride, Theory of Mind (ToM)

I’m guest posting today over at Static Vox. My friend Stat Mama asked me to write a piece about raising autistic children, and I was happy to do so. Hope you enjoy my article!

© 2010 by Rachel Cohen-Rottenberg

2 comments

And Now, A Word From My Daughter

February 25, 2010 Rachel Education, Parenting, Spectrum Pride

My daughter Ashlynne is a junior in high school. For her journalism class, she keeps a blog about events and issues of interest to her. After seeing autism in the news recently, she decided to write about the most recent and infamous Autism Speaks video. She sent me the link to her post and gave me permission to mention it on my blog. If you’d like to read her piece, you can find it here.

It’s very heartening to know that my daughter sees the issues so clearly and that she is sharing her knowledge with her peers. Way to go, Ashlynne!

© 2010 by Rachel Cohen-Rottenberg

8 comments

Letting Go and Starting Over

June 1, 2009 Rachel Autism-Literate Therapists, Eye Contact, Marriage, Meltdowns, Occupational Therapy, Parenting, Sensory Processing Disorder (SPD), Sensory Processing Issues, Sleep, Spectrum Pride, Volunteer Work

Last night, I reached a milestone in my life. And today, I am so relieved. Tired, but unbelievably relieved.

The backstory: We’re having a new ceiling put into our living room because the old plaster was flaking off. The process entails moving everything out of the living room into the dining room so that the contractors can work. The whole job will probably take another three days. So everything is piled up in the dining room, and I have to walk through the mess if I want to use the bedroom, the kitchen, or the bathroom. Did I mention that I hate clutter?

Yesterday, the contractors were supposed to be here at 9 am. I had planned to do some writing in my loft in the morning, while they were here, and then hang out in the rest of the house after they’d left. It’s always difficult for me to have people in the house, especially ones making lots of noise, so I figured I’d burrow into my loft for a few hours, and by the time I came out, they’d be gone.

Nice plan, huh? Unfortunately, the guys didn’t get here until 11 am or so. Isn’t it fun when people are late and blow your plans right out the window? I got very agitated. I could feel my nervous system panicking. They had good reasons for being late, but I felt like my day was getting totally disrupted. 

In addition to getting here late, the guys were here a lot longer than I’d thought they’d be, and the whole thing became very overwhelming and disorienting. There is only so long that I can hide upstairs before I need to go to the kitchen and get something to eat. And, of course, the irony of the whole situation is that the guys doing the work are wonderful people—friendly, conscientious, and good at what they do. In other words, they’re the kind of people that anyone without a jangly nervous system would love to have around.

But I’ve got a very jangly nervous system, and by the evening, it felt like my day had been turned upside down and shaken a few times. Needless to say, I started to get upset. The disorder in the dining room was driving me nuts. My nervous system was so keyed up that I was shaking. I was feeling angry, and I said so, but the anger very quickly turned to tears. My meltdowns seem to follow this pattern these days. I go through the anger part really quickly and then go straight for the sadness.

I felt really exhausted, but it wasn’t just because of the work on the house. What happened yesterday was just the proverbial straw that broke the camel’s back. What I’m really exhausted by is all the energy I’ve expended since forever in my ongoing quest to become neuro-typical. Now that I’ve realized that I don’t have to pretend anymore, everything I do out in the world feels impossible. Working at the store feels exhausting, because every single time I have a conversation with anyone, I have the following script running in my head:

“Okay, smile……Make eye contact. No! Not that much……Pause. Say something helpful, but don’t jump in too fast……Wait……Wait……Now! Say something clever……Very good……People laughed……Now, make more eye contact……Okay, the conversation is winding down……Okay……Oh, shit, how do I exit gracefully from this interaction? I have no idea……Help……Okay, okay, I’ll just use my strong voice and act confident……There……I’m walking away now……G-d, I feel like such an idiot….”

For some strange reason, running this script just isn’t fun for me anymore.

My husband and I talked for a long time last night, and he helped me to see that almost all of the commitments I’ve made in the outside world are optional. I don’t have to do them. I made most of these commitments when I was still thinking that I just had to work really hard at the store, or on my OT work, or whatever, and things would get better. Even though I knew that I couldn’t change my neurology, even though I had accepted that I wouldn’t make friends at the store, even though I knew that the OT work might not have any effect at all, I still went into everything with the old idea of progress. It’s hard to shake. In large part, it consists of trying to be the NT that I think the world expects me to be. I know I’ll never get there, but over the course of my life, I’ve tried getting as close to it as inhumanly possible.

At some point in the past six months, it did dawn on me that I might not be the quite the actor I thought I was. But this realization didn’t stop me from trying. I still catch myself working on my big, ongoing, lifetime challenge to see how close I can get to “normal.” I used to wonder whether I’d actually fooled anybody, but you know what? I don’t care anymore. The only way for things to get better is for me to start untangling my true Aspie self from all my ridiculous mega-efforts to be someone I’m not. 

I’ve had an NT impersonator job all my life, and it’s time for me to retire. Fifty years is enough. It really is. I don’t need a pension, and I’m not going on the public dole. I’ve got all kinds of great things I love doing, and the old job is getting in the way.

So, although I love my OT, driving an hour to see her is really out of the question. I’m so exhausted by the intensity of all the sights, sounds, movement, and emotional energy out there in the world that I need to pull back in a major way and have some respect for myself. And I don’t want to work at the store again until I find some way to be there without constantly running my script. Having come to these realizations, I emailed my OT and the people in charge at the store. My OT wrote me back a really lovely, supportive email. I’m pretty sure I’ll get a similar response from the people at work. After all, I have taken care to surround myself with very nice people.

Meanwhile, here I am, living in this strange transitional state of knowing that the old ways won’t work, and wondering what the new ways will look like. I hate transitions, but there you are. I don’t know what the future has in store, but I do know that my marriage, my mothering abilities, and my capacity to be a friend all depend upon being in some kind of harmonious relationship with who I really am.

I’m only beginning to understand how different I am from most people. I’m only beginning to understand that most people do not experience the world with anything remotely approaching the intensity that I do. And I have to respect that. I have to respect the fact that just going outside and seeing all the green leaves on the trees can be a beautiful and overwhelming experience. It’s overwhelming because it’s so damned beautiful.

Perhaps I need to experience the world in small portions. Something like that.

It  feels so good to start over—to get up in the morning and tune into my hyper-aware, hyper-sensitive Aspie nervous system and see what we can do together. Last night, I didn’t sleep well, and when I have things to do in the outside world, I always feel very anxious trying to do them without enough sleep. But this morning, I realized that I didn’t have to go out there. I could be tired, and it would be all right.

The one outside commitment I’m keeping is to my new therapist. First things first. I want to work on accepting who I am, and she seems quite willing to help me. So that’s where I’ll begin. Again.

© 2009 by Rachel Cohen-Rottenberg

13 comments

The Words I Most Needed to Hear

May 11, 2009 Rachel Anxiety, Disabilities, Gravitational Insecurity, Happiness, Making Lists, Marriage, Meltdowns, Parenting, Sensory Processing Issues, Women and AS

Some momentous personal things have occurred since last Friday. It’s taken me awhile to know how to express what I feel about them. Although I woke up with a bad cold today, I’m feeling fairly lucid at the moment, so I thought I’d start describing the happenings.

Last Thursday, I made a big mistake that only I could see: I tried to do two things in the outside world in a single day. And worse than that, I tried to do them consecutively.

Before I left for my volunteer job last Thursday, my husband asked whether I could stop at the co-op after work to get him some more homeopathic medicine for his cold. I told him I’d try, and I felt the way I always feel about these requests: Totally Lousy. Lousy because it’s so hard for me to go to two different places in the same day, and lousy because I wish I could just say, “Sure, honey, no problem.”

In any case, I went to work, and then I went to the co-op. Outside, there were some really nice plants, so I bought a bunch, and then I went into the store and bought some medicine for my husband. Luckily, the store was quiet, so I didn’t feel completely overwhelmed. When I came home, I was tired, but that’s pretty normal after work, so I rested. The remainder of the day went along fine, and I felt great. 

Then, Friday came, and I had my first meltdown since my diagnosis in November. To understand why, you’ll need to understand that every Friday, we get ready for Shabbos (our Sabbath), which includes the following tasks:

1. Sweeping up the house (me)
2. De-cluttering the house (me)
3. Emptying the wastebaskets and recycling (me)
4. Buying the food for dinner (my husband)
5. Cleaning the bathroom (my husband)
6. Setting the table (my husband)
7. Cooking the food (my husband)

This past Friday, though, my husband was sick, and I started worrying about having to take on some of his tasks. That was the beginning of the meltdown: the worry. I knew I couldn’t do the food shopping myself and get the house cleaned up, so I offered to go food shopping with him. I figured that it would help us both. So that was the plan.

Nice plan. Except that then I had to figure out in what order to a) clean the house, b) get a shopping list together, and c) go to the co-op. But I couldn’t even get to the point of sequencing. Each task felt absolutely monumental. Like. Turning. A. Barge.

So, I started with what was familiar. I started sweeping. And as I started sweeping, I noticed that I was becoming more and more sensitized about how hard it is. I’m fine with taking the broom and moving it back and forth on the floor. But then, there’s having to pick it up and pull the dust bunnies out of it; somehow, having the broom upside down makes me dizzy. And then, of course, there’s having to bend down with the dustpan and sweep the dust bunnies into it. Serious gravitational insecurity moment. Just thinking about it makes me anxious. And then, the worst part is sweeping under the bed. Arghh. I have to get down on the floor on my stomach and kind of shove the broom here and there till I get all the dust balls. When I’m all done, I am one dizzy, disoriented human being.

When I realized how hard all this was going to be, I started to get really agitated. And when I get agitated, I start thinking really helpful thoughts, like, “Hey, Rachel, if you’re so smart, how come sweeping the floors is so hard, huh? Huh? HUH?” As my self-esteem started going down, my irritability started going up, until I was stomping around and angry at everything. When my husband committed the unforgiveable sin of moving the recyclables to the garage, the recyclables that I had planned to move myself, thank you very much, I just about had a cow. Fortunately, I was able to recover some sense of time and space, and say, “It’s not you I’m angry at. It’s me. It’s me. It’s me.”

Ultimately, I just broke down into inconsolable sobbing. The more I thought about how hard it was to sweep the floor, the more I thought that writing up a shopping list was beyond my skills as a human being. How could I possibly transition from one task to another in the state I was in? Especially when writing a shopping list required time and concentration that seemed impossible to locate at that moment. On a good day, each task feels like a big challenge. On the day following one in which I had pushed my limits, each task seemed beyond my reach.

Hubby tried to give me some comfort, but I just kept saying, “Everything feels so incredibly hard. Why does it feel that way? Why can’t I just sweep the room without getting dizzy? Why can’t I just make a food list and be done with it? I can’t stand it.”

And then he said the words that I’ve been waiting to hear all my life:

“It’s not your fault.”

I melted. What an incredible relief. It’s not my fault. I’m doing the best I can, and then some. I have to accept myself as I am. I need to stop apologizing for what I can’t do. It’s not my fault.

Wow.

Okay, hubby loves me as I am. He sees me clearly, and he loves me as I am. That’s very good. Cross that worry off my list. Done. I got it together to make the food list and go shopping. My husband even swept under the bed and swept up everything into the dustpan. We were both tired out, but we were in it together, and that put me in a much better frame of mind.

But then, on the heels of this major piece of wonderfulness, came the second worry: I don’t do enough for my daughter. I can’t cook more than a one-course meal because the sequencing is too hard. I can’t go to her concerts at school because the sensory overload is immediate. I didn’t go to the paintball place for her 8th birthday. And on and on like that.

I was right back in the soup. I felt like writing her a letter, apologizing for all the things I haven’t been able to do over the course of 16 years. I know, it’s a little much, but that’s how I was feeling. I decided that when she came back from her class trip, I’d talk with her about it. I’d try to explain why I am the way I am. She knows about the AS and SPD, but we haven’t talked about its impact a lot lately.

So, I was getting ready for this conversation when Mother’s Day came, and I thought, great, we’ll have our talk today, when everyone is in a good mood. And then, before I got the chance to initiate even the merest hint of a beginning of a conversation, my wonderful, loving, utterly fantastic daughter gave me a Mother’s Day card she had made.

And the card said, “Thank you for being such an awesome mom. Thank you for everything you’ve done for me. I love you so much.”

I couldn’t believe it. It was perfect. I said, “That’s so beautiful, Ash, and so much what I needed to hear.” And then my big strong teenager gave her little Jewish mom a great big hug.

I melted. Again.

So, in the course of 72 hours, I got to hear the words I most needed to hear:

My challenges and disabilities are not my fault.

I am an awesome mom.

It’s no coincidence that today, I’ve finally got this cold that’s been coming on and going away for months now, over and over. Until today, I’d start to feel sick, and then a few days later, it would turn into nothing. This would happen in two-week intervals, over and over and over.

Now that I’ve had these two weighty pieces of worry taken off my body and soul, I can get sick like a regular person, get over it, and go on with my life. That sounds pretty good, don’t you think? ;-)

© 2009 by Rachel Cohen-Rottenberg

11 comments

Happy Mother’s Day!

May 10, 2009 Rachel Happiness, Parenting, Women and AS

To all you moms out there: Happy Mother’s Day! I hope you have a fun and wonderful day. 

In honor of Mother’s Day, I’m posting some pictures of the person who made me a mom: my bright and beautiful daughter Ashlynne. All of the photos were taken last week, during a class trip to New York City.

On the train from Springfield:

 

 

 

 

 

 



On the ferry in NY:

 

 

 

 

 

 




At the Museum of Modern Art, looking like part of the artwork:

 

 

 

 

 






Just being bright and joyful:

 

 

 

 

 

 

 





Our plan for today is to go to one of my favorite kinds of places in the world: a perennial farm. I’ll get some new flowers, vegetable plants, and herbs. If the weather cooperates, I’ll get to do some planting in the garden, too.

Be well, everybody! 

© 2009 by Rachel Cohen-Rottenberg

6 comments

Flowers, Art, and the Arrival of Spring

May 5, 2009 Rachel Happiness, Making Art, Parenting, Visual/Spatial Skills

Although spring officially started in March, here in Vermont it’s only arrived in the past couple of weeks. It’s been a lot of fun to see what’s appearing in our gardens:













I’ve planted another garden to the left of the one in the picture, but it’s not quite finished yet.

When I’m not digging up our entire lawn and planting things, I sometimes turn my attention to art. Here is a project that I just finished: a shadow box!













 
This project was so much fun. I worked on it when my mind was too full of words and I needed a different kind of concentration.

I bought the shadow box years ago, when my daughter was small, and it had been sitting in the attic unused. So, I decided to create “The House of the Worry Dolls.” The dolls are kind enough to hold many of my worries. At least, that’s what it says on the little piece of paper that came with them. If you look carefully, you can see a doll in each of seven rooms. (One of the dolls is in a tiny coffee mug.)

Each room gets its own hanging mobile or lamp. The origami crane at the top of the house came courtesy of my daughter; years ago, when we were homeschooling in a cafe, she made the crane out of a used teabag packet. The thermostat is from our old heating system, the two cats used to be earrings, and I found the orange Matchbox car out in the garden when I was digging up the grass.

And finally, here are some recent photos of my daughter Ashlynne. As you can see, she jumps for joy at the beginning of spring…















She hasn’t forgotten her powerful karate kicks…














 
And she has a style all her own!














Occasionally, she will even sit on a couch in the middle of the street:














Why? Because she’s resting. She’s been working hard. At what, you ask? At carrying the couch several blocks with her friend, of course! A neighbor had put the couch outside to be taken away for free, and Ash and her friend decided to carry it home. When they showed up with it, I told them to just leave it on the porch, and Bob and I would help them carry it up the stairs to Ash’s room. But they were on a roll. They brought the couch all the way upstairs as well.

Girl power!

© 2009 by Rachel Cohen-Rottenberg

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