Tag Archives: Parent

How We Discuss Our Children

Posted on October 28, 2013 by | 73 comments

Some people say that parents like me are dismissive of how difficult it is to parent an Autistic child.  They say that we are choosing not to dwell on the negative and that it’s important that the other side be shown.  They suggest that by NOT discussing how very challenging it is, we are doing harm, that it is in the stories of horror and devastation that services are gotten.  They say that pathologizing autism is necessary because without talking about it as a pathology, funding would be diminished or cut off.  Many people assume that those of us who write about the positive aspects, the joys, the triumphs that we experience as parents of Autistic children, we must have “high functioning” children and that we cannot possibly know what it is like to have a child who is “severe”.   We are accused of diminishing or dismissing the suffering other parents experience.

When I was fairly new to all of this, not so long ago, I thought nothing of writing about my child’s latest upset in graphic detail.  Not so long ago, I wrote about my child, believing she did not and could not understand what was being written, that she would never read my words, that she could not and did not understand what I said to others, what I wrote.  I posted photos of her, never once considering whether she wanted such a photo posted on the internet for all to see.  It did not occur to me to ask her.  Literally, it did not occur to me.  These are things I now am aware of.  Posts have been deleted, photos have been removed, but had I continued to listen to what I was being told, had I not seen and met non-speaking Autistic children, teenagers and adults who wrote how it felt to be spoken of, written about, and treated as though they weren’t there, I don’t know that I would have thought to stop.

It isn’t that parenting is never challenging, hell, life is challenging, it’s that in talking about parenting it too often sounds like we are blaming our child for our suffering.  It’s like when my husband and I fight and I think to myself, if he didn’t do x, y and z, I wouldn’t get so angry and while there may be some truth to that, it also isn’t owning up to my part in the fight.  So many people write about parenting but they don’t seem to connect it to how they respond to this situation with their child, is how they respond to stress, not getting what we want, impatience, dealing with upheaval, etc.  It seems to me, the less common conversation is the one that talks about personal responsibility and honoring another person, instead of blaming them for what ails us.

In all of this, the Autistic person, whether they are a child, teenager or an adult, are being “treated as though they weren’t there.”  This was the thing that changed everything for me.  Realizing that there is a person there.  Right there.  Right here.  Right in front of me.  And this person has feelings and thoughts and her opinions about herself are affected by what I’m doing and saying about her.  She is just like any other child, who would feel tremendously sad and even traumatized knowing that her parent blames her for their pain and upset.  

This post is being interrupted by more pressing matters, so I will have to come back to this when I have more time…

Em on her pogo stick copy

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Posted in Autism, communication, Parenting

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To Educators, Therapists & Doctors

Posted on October 25, 2013 by | 61 comments

You are the first people most parents meet after getting our child’s diagnosis.  Therefore you have tremendous influence on how we view autism, what that means or doesn’t mean, what services we seek, and how we then view and treat our child.

That’s a huge responsibility.

The onus is not entirely on you, of course, but don’t kid yourself, you have the power to change the course of a child’s life and their family’s with your knowledge and what you tell their parents.  If you don’t know the answer to a question, do not pretend you do.  Do not rely solely on whatever university you went to, or the medical journals you may subscribe to, the most recent statistic, medical study or your colleagues for information.

If you’ve been taught a particular therapy or  teaching method is the only scientifically proven method to “treat” or teach Autistic children, find Autistic people who were given that therapy or method as children and learn what they have to say about it.  If you find a number of Autistic people are speaking out about a specific treatment or method, saying they have post traumatic stress as a direct result, reconsider your position.  If you still feel this therapy is important to pursue, ask yourself why and at the very least, inform the parents who are considering this method that there are Autistic people who believe it was damaging to them.  It doesn’t matter whether non autistic people and professionals agree, you have an ethical obligation to tell parents that this treatment or method has caused damage to a great many.

If you think you know, if you are convinced you are right about some aspect related to autism, do more research and make sure what you think you know, is in fact true, if it isn’t or if it isn’t clear, then do not present it as though it is the “truth”.  I don’t care how well known or famous you are in the field of autism, if you are not engaged in reading and talking to Autistic people outside of a clinical setting, you have more to learn.  And do not be afraid to admit when you don’t know something or if you find you are wrong about something you previously thought to be true.  Most of us would prefer being told by a professional that you don’t know something or thought you knew something, but now realize you were wrong than to be given incorrect information.  There’s massive amounts of incorrect information out there.  Please.  Don’t add to it.

You have a responsibility, not just to Autistic people, but to those of us who are their parents and to your profession to read everything you can about autism and what it means to be autistic.  If you’ve never read anything written by an autistic person, now’s the time to do so.  If you cannot bear the idea of doing so, if you believe your various degrees are enough, if you feel annoyed, believe I’m being presumptuous by suggesting you do more, then find another profession.  You aren’t doing anyone any favors by continuing to pursue a career in a field that has so few concrete answers but that you are convinced you know all there is to know.

Even if you’ve read one or two books, maybe seen the latest documentary featuring one or two autistic people, it’s not enough.  You need to read blogs and books written by non-speaking Autistic people, there are more and more of them being published every year.  You need to read the writing of people who speak, can sometimes access language, access language all the time, but do not say what they intend, people who have intense sensory sensitivities, those who are hypo sensitive as well as those who are hyper sensitive and those who have a mixture of the two.

Examine your beliefs:  Do you believe that non speaking Autistic people cannot speak because they aren’t trying hard enough or because they do not have anything to say?  If someone’s facial expressions are hard to read, do you believe that means they do not feel emotion?  Do you think Autistic children lack empathy?  Are you convinced that Autistic people are unreachable?  Do you believe Autistic people have no desire for friendship, lack the ability to love, cannot understand what is being said and written about them?  Do you think that if an Autistic person acts more like a non autistic person they have “recovered”?  Do you believe this is a worthy goal?

Please.  Do all of us a tremendous favor.  If you are entering the field of autism or are an educator, therapist, doctor or professional in the field, in whatever capacity that may be, question everything, read, ask questions, examine your beliefs.  Learn what so many have gone through at the hands of well-meaning professionals.  Remain curious, stay open to new ideas and continue to adjust what you believe.

I was terrified when we received my daughter’s diagnosis.  I knew very little about autism and I looked to all of you for answers.  The answers I was given I’ve since learned were mostly incorrect.  Because of those answers, we made a great many mistakes.  Mistakes that hurt our daughter.  Other parents do not have to go through what we went through.  There is so much great information out there, but often finding it can feel overwhelming and impossible for parents.  You have a great deal of power to affect how families think about and respond to their child and their child’s diagnosis.  You can help so many families help their children in ways that are respectful, by honoring them and their neurology and not making them feel they are broken or are to blame for how society misunderstands and treats them.

To those non autistics who this letter does not apply, you who have dedicated your lives to helping children like mine, I thank you.

Rosemary Crossley, Soma Mukhopadhyay, Christine Ashby, Anne Donnallan, Douglas Biklen, Mary Schuh, Leah Kelley, Pascal Cheng, Harvey Lavoy, H. Markram, K. Markram, *Marge Blanc, Susan Marks,  Paula Kluth, Char Brandl, Cecilia Breinbauer, Phil Smith, Barry Prizant *do not have photos* and so many others, thank you.

Rosie Crossley

Soma Mukhopadhyay

Christy AshbyAnne DonnallanDouglas Biklen

Mary ShuhLeah

PascalHarvey LavoyH. MarkramK.Markram

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Posted in Autism, Blogs By Autistics, Parenting

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The Joy of Being Wrong

Posted on October 23, 2013 by | 40 comments

When my daughter was eight I was so envious of my friends who had daughters the same age, because they were going out together, having mother/daughter outings, getting pedicures, doing girlie things and I despaired that I would never have these kinds of outings with my child.  I know how selfish this sounds.  I know this statement is all about me and has nothing to do with my child or her interests or her feelings.  I always dislike hearing parents talk about their children as though they were some sort of glorified extension of themselves, like a conduit for all the parent’s failings, as though this child was a metaphoric phoenix rising from the parent’s DNA, destined to be all that the parent hopes for, but has failed to do and be themselves.  But at the time I did feel envy and also, was aware enough to also feel badly for having those feelings.

Flash forward to this summer.

A friend of ours returned home one Saturday afternoon with Emma, who ecstatically showed off her newly painted RED toenails.  I was astonished. “You guys went and had a pedicure?” I asked.  “Red toenails!” Emma exclaimed with glee, while positioning her foot next to our friend’s, who had the same color red on her toenails.  “They match!”  Since then Emma and I have gone every other weekend for our “pedicure spa” where we sit side by side and have our toenails painted.  Emma picks out the color, which she insists we both have so that we “match.”  Both of us look forward to these outings.

There are other examples of times I’ve despaired, thinking that whatever our current situation is, it will remain so forever.  This is not specific to my daughter, but is something I am aware that I have a tendency to do in life and always have.  The idea that things are fluid and constantly change, is a tough concept for me.  I tend towards extreme thinking.  When things seem bleak, I am convinced they will always be.  When things are good I am suspicious and await the inevitable.

It is as though I believe I will have to pay for those good times, like an invisible law that shows no mercy.  The good times are tempered with the “knowing” that they will be fleeting and won’t last.  Over the decades I’ve gotten better at this, I am aware this is my tendency.  I catch my thoughts quicker and am able to remind myself that I do not know what will happen next.  But still I find myself easily sliding back into that old way of thinking.  It’s not the reality of someone else’s life, it is the idea of someone else’s life that I compare myself to and that idea is never true.

These days I try to head off comparing the minute I become aware of it.  It does not serve me.  It does nothing to help me.  I am not a better person because of it.  It makes me sad and miserable and has nothing to do with either of my children or my life.  In fact that thinking hurts my children.  Both are highly sensitive to other people’s moods, they easily pick up on emotions and take them on.

At the moment, Emma and I are sporting pink toenails and every time I see our toes, I smile. They remind me of all those years when everything seemed grim and hopeless.  When despair surrounded my every breath, when desperation hung in the air I breathed, when I believed I knew what we were up against, when I believed this was going to be our life, when I thought I knew and no one could convince me otherwise.  That toenail polish, that gorgeous pink toenail polish that Emma insisted we both wear is proof of just how wrong I was.  About everything.  About everything.

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Posted in Autism, mother/daughter, Parenting

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The Trouble with Treating “Behaviors”

Posted on October 16, 2013 by | 54 comments

A child throws a chair or their shoes at school and the parents are told of their child’s “problematic behavior”.  A child pokes another child repeatedly and when told not to, laughs and does it again.  The teacher tells the child they will not be able to go out to the playground at recess as punishment.  A child runs from the classroom, causing the teacher to stop her lesson and pursue the child.  The child is given a time out for displaying “challenging behavior”.  A child does not respond to the teacher, does the opposite of what is asked and the parent is informed that their child is “out of control” or “refuses to listen” or “is being disruptive” or any number of other comments that so many parents routinely receive from the various teachers and schools that our kids attend.

Each time it is the child’s behavior that is highlighted, documented, and charted.  Reward systems are put into place, time outs are given, the child is told there are consequences to their actions and things they love are taken away to demonstrate this point.  The thinking goes that behaviors must be treated.  But I question all of this because I’ve read too many stories that beautifully explained these so called behaviors by many people who spent a great deal of their childhood being misunderstood and told their behaviors were “out of control” or “challenging” or they needed to understand there are consequences when they were responding to other things in their environment.

Imagine you are on the school bus and another kid is seated directly behind you.  They scratch the back of your seat with their fingernails.  The sound of their scratching, coupled with the vibration caused by it, makes you feel as though your entire body was covered in crawling ants and the vibration makes you feel physically ill.  You do not have much spoke language that you can easily access and the language you do have is thought of as echolalia so it is often ignored.  Never-the-less you do the only thing you know to do, you shout, “No!  Stop doing that.  You cannot hit, you cannot punch, you cannot bite!”

The other kid thinks this hilarious and realizing you are directing this at them, continues to scratch the back of your seat, except now they are doing it with renewed vigor.  The bus matron comes over and tells you to stop yelling, that you are being disruptive and need to be quiet.  The kid behind you continues to scratch your chair, and despite your protests, despite your attempts to make him stop, he will not.  Eventually you turn around and spit at the kid.  The matron comes over, now furious and tells you that you must apologize and that she intends to tell your parents how badly you’ve been behaving.  So you spit at her too.

When the matron tells you that you will not be allowed back on the bus, something you love riding, you begin to cry and bite yourself.  Again you are yelled at, told to stop it immediately….  When you get home your parents tell you this kind of behavior is unacceptable and on it goes.  No one says a word about the boy who was making your bus ride miserable.  No one talks about his behavior or that there are consequences, in fact there appear to be no consequences to some people’s behavior, only yours.  The message you learn is that terrible things will happen to you, seemingly without reason, without any explanation and that you must be hyper vigilant and avoid sitting near any other kids.  The next time you board the bus you attempt to sit in the very last seat, but are told you cannot and are seated in front of the boy who delights in scratching your seat.

(The above story happened to someone I know well and it was only when I was able to type with this person that the whole story came out.)

A few months ago I read about a boy whose older brother would punch his friends on the shoulder upon seeing them.  They all smiled and laughed.  After much observation, the younger brother decided that this was a good thing to do, especially to someone you liked and wanted to be friends with.  So the next day when recess rolled around this boy went up to another kid and punched him in the shoulder.  Only the kid didn’t laugh or playfully punch him back.  Instead he yelled at him to stop hitting him, called a teacher over and the other boy was sent to the principal’s office.  The boy was told if he continued “picking fights” he would be expelled.

These examples are but two of dozens about so called “behaviors” that are seen as problematic and in need of various interventions to deal with them.  And yet, when one listens and asks non-scolding questions from a place of curiosity without threat of admonishment there is almost always a reason for these so-called “behaviors” and the reasons may illuminate why the various interventions to treat them will not work, or will work to make the person learn to camouflage or quell their behaviors, but will not help the person learn how to cope or deal with the things causing the “behaviors”.  Treating actions that are seen as problematic as though they occur in a vacuum is like applying a band-aid on a rash caused by allergies.  The band-aid might cover the rash from view, but it will do nothing to treat the cause.

It is interesting to note that there are people who consistently work with those who are known as having “problematic or challenging behaviors” and yet, all of those so-called behaviors disappear when they are treated with respect, presumed competent and they are not treated as though their actions are intentionally disruptive.

Soma Mukhopadhyay and Emma ~ September, 2013

Soma & Em copy

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What Others Had to Say: Love, Overwhelm, Violence

Posted on September 11, 2013 by | 51 comments

Yesterday I wrote a post entitled, When Upset Turns Violent.  I wrote it hoping for feedback from those who may have at one time, or currently have felt so overwhelmed they strike out and from parents who are on the receiving end of children who become violent.   I wanted to get a better idea of the kinds of support that might be beneficial to all involved.

As the comments came in, both here and through email, I realized a few things.  One was the shared feeling of shame so many felt. Tremendous shame was described by almost all the parents of kids who express themselves violently, as well as some who become so overwhelmed they become violent.  Exacerbating, or perhaps a part of the shame, was the feeling that this should not be spoken of for fear of ridicule, blame and judgment.   Many people remain silent, which serves to further feelings of isolation and disconnect from community.

Another thing I realized as I read, was how both parents and those who are in overwhelm are actually feeling similar feelings of powerlessness and wanting a safe place to go.   I identified mightily with all the feelings described and thought it might be most helpful to reprint a number of the things people have written, both from the comments section on this blog, but also from some of the emails I received.  (For those who asked that I not reveal what you wrote, don’t worry, I haven’t.)   There are too many wonderful thoughts, comments, advice and experiences to publish here in a single post, but you can read, at least some of the comments in the comments section of yesterday’s post and a few that came in on Emma’s Hope Book Facebook page.

What follows is a sampling from some of the terrific comments received.  There are many more and they are all insightful and wonderful.  So please do read the related articles at the end of this as well as all the comments from those who so generously wrote in on this blog.  Obviously, there is a huge need for more conversations like this…

A few quotes from parents –

“I just want a safe place where I can talk about this stuff.  Not publicly.  I don’t ever want to be “one of those moms”  but I want to be able to talk about what’s going on with other parents who know what it’s like.”

” I know what it is to sit in an IEP meeting begging for help for my child with my eye swollen shut and bite marks and scratchs covering my arms.”

“I am scared of ____ and that makes me feel terrible.  What kind of parent is scared of their own kid?  A kid I love with all my heart.  A kid I want to help…”

“It changes you when you live in a state of perpetual fear and not having any place to talk about that makes it  harder.”

“I would love a support group, but not where everyone sits around blaming all their problems on autism and their kid.”

Comments from others:

Emily K. wrote:  “Remove yourself from “their” space but do not leave. Defend yourself but do not leave. Let your child Leave/ escape and do not block his/her path. Follow but do not intrude. Allow space and time do not react but respond in the opposite, we need peaceful and loving parents.”

Autisticook wrote a number of really powerful and wonderful comments, this is but one of them:  “I have given some thought to what I would have needed as a child to cope with my violence. I would like to start with a caveat: first of all, anyone who knows me in real life would be shocked at my description. The only people who believe I can be violent are the people I’ve actually hit. That’s about 4 or 5 people. The rest of the world calls me sweet natured and a good person and empathic and supportive of others. I’m also just over 5 feet tall and present as extremely non-threatening.

Second of all, my parents are still the most important two people in my life. A lot of people in the autism community weren’t so lucky with their parents and have a lot more to deal with as a result. I’ve been incredibly lucky to have such generous, loving people prepare me for the outside world. I have a lot of emotional stuff that’s coming out now that I know about autism, but I don’t blame them for any of it. So here goes: the things I needed as a child and didn’t get.

1. Don’t blame yourself. Don’t punish yourself for not being a perfect parent. I can tell when you feel bad and what I’m learning is that I need to be perfect as well. When I’m not, I feel as if I’m disappointing you and making you feel bad. I want you to be happy with me. But when I make you feel bad, I feel bad as well and that is making me even more stressed out because I’m still learning to deal with my emotions.

2. It will get better. I’m trying to learn how to walk. You can show me how it’s done but you can’t force me to walk. It might take me a bit longer to learn this, or I might do it a bit later than others. But it doesn’t mean I will never learn. I just need someone to show me and teach me and support me. This is as true for feeling upset as it is for walking. Teach me how to be upset. Show me there are other ways of being upset, instead of only telling me the way I have chosen is wrong and leaving it at that.

3. Help me recognise my triggers. I might come home from school cranky and tired and overwhelmed. My brother sticking his tongue out at me might simply be the last drop. If I am not saying much, if I’m curled up in the big chair kicking my legs out, or if I seem to be absorbed in an activity like playing with my toys and not paying attention, it might be because I’m trying to self-regulate and deal with all the stuff that’s coming at me. Help me recognise that this is what I am doing. Maybe you need to learn how to read my behaviour first, like hanging upside down in the chair (vestibular stims) and kicking my feet (propioceptive stims) and the attention on my toys (visual or tactile stims). You’re the adult, so I’m depending on you to explain to me what I’m doing and why. I won’t be able to correct you on your assumptions until I’m an adult myself. So please be careful in learning my behaviour and don’t label it until you’re absolutely sure. It’s also OK to ask my input on this when I’m calm and happy.

4. Allow me a way out. If my self-regulating isn’t allowed, I can guarantee you I will get a meltdown. And once I am in that space, all I can think of is making the thing stop that made me go into meltdown. I only have short term memory and very limited reasoning power when I go into meltdown, so I will latch onto whatever trigger I see in front of me. First it will be my brother who stuck his tongue out at me. And then it will be you for restraining me from hitting my brother. Or myself for being in the way. Triggers triggers triggers. I will keep triggering until the world is empty of triggers or until I am utterly exhausted. So if you hold me down, you’re actually keeping me in the world of triggers. I need a different world that is practically triggerless. But I’m too young to know this, which is why I will sometimes keep following you and hitting you even though you try to remove yourself. Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.

5. Don’t ask me questions. If you want to know how I’m feeling, please ask me afterwards, when I have calmed down and can find my words again. Ask me too soon and it will just be another trigger. I am dealing with my overload, with my own feelings of anger and guilt and frustration and sadness and pain, and there’s so much going on that there’s no room for words. It’s hard enough for me to even understand, LITERALLY understand, what you are saying. Formulating an answer is simply not going to happen. However, if you talk about it with me afterwards, that might be a really big help for me in learning how to understand emotions and how my mind works. I may sound resistant to questioning, but that’s also because I’m afraid of going into another emotional meltdown.

6. Don’t try to distract me. I’m not having a temper tantrum, I’m having a meltdown. Trying to get me to focus my attention on something else means I get even more input that’s getting on top of the input overload and I just can’t deal with that. Fewer triggers, not more. You can try getting me to hit a pillow instead of you, but the pillow isn’t triggering me so I might not listen to that. What’s better once I get that violent is bringing me to a GUARANTEED safe space (I emphasise guaranteed because it needs to be not just a space of your choosing, but a space where I can feel safe no matter what and where I won’t be forced out again). My safe space was the back of my mother’s wardrobe, between her clothes, because even if I had the door to my room closed, people still barged in. Once I’m in my safe space and I know people will no longer ask me questions and I can block out the noises and lights and stim to my heart’s content without someone telling me it’s wrong, I usually calm down within an hour or two.

7. Yeah, it takes that long. Please give me time to process. I will come to you once I’m ready. Because I love and trust you, even if I don’t always show it in a way that you can recognise. Please don’t punish me for not understanding why things went wrong or for losing control. I’m punishing myself already. Trust me on that.

Anon wrote:  “I used to hum to myself for comfort when I was sick (about 7yrs) and my father used to threaten me into silence – it was his ignorance and fear, not malice… but I stopped humming.”

Autisticook wrote:  “It was NOT HAVING WORDS and SO MUCH FEELS and STOP TALKING I CAN’T MAKE SENSE OF THINGS and HELP ME NOTICE MY DESPAIR NOTICE MY NO WORDS HELP ME. And above all just stop stop stop stop stop.”

Ischemgeek wrote:  “Especially big for me was stop yelling at me so I can think and figure out what you want because I don’t even know what you want and why you’re screaming at me I just know you’re screaming and I can’t take it just stop.”

And in another comment wrote:  “For me, violence of the meltdown variety (as opposed to sibling bickering violence, which stopped around age 8) was never so much about getting my way and more about gettingaway, if that makes sense.”

MonkeyPliers wrote:  “I’d be concerned about any child developing the kind of anger towards her- or himself that I learned to have towards myself from not being understood and being accused of “putting on a display” when I couldn’t regulate myself.”

Related articles

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Posted in Autism, Parenting, violence

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When Upset Turns Violent

Posted on September 10, 2013 by | 92 comments

A number of people have reached out to me privately with questions about how to help their child who is violent.  They fear for their other children’s safety as well as their own, but are frightened to reach out for help because they worry their child will be taken from them.  This is not an easy topic.  If you do not have a child who is prone to violence, it is difficult to imagine what that child is going through.  If you are not and have never been the recipient of violence it is difficult to imagine what that is like.  Similar to self injury/harm this is a hot button topic for many people, not just parents who feel powerless to help their child and feel they have nowhere to turn, but for the person who does not have any other way to express themselves.

So I am asking for all of your help.  If you once were or currently are someone who knows anything about responding to the environment and people in your life with violence, and are comfortable telling me what that experience is/was like for you, please email me at:  emmashopeblog@gmail.com.  Also if you are in a position to tell me what might have helped, what, if anything, might have given you the support you needed/wanted.  Was there anyone you could talk to?  If you cannot speak or cannot rely on verbal speech when upset, were you able to type?  Would that have helped?  Is there anything that might help/would have helped?  Do you have advice for parents?  Do you have advice for those who are under the care of another person?  If you are the parent of a child you are frightened of and want to reach out, please do.  Please describe your situation as best you can, as well as what might be helpful to you.  In other words would a help/hotline (if one were available) be something you would use?  Would you prefer an anonymous support group where you could discuss what you are going through with others?  Would something else be helpful?  Anyone who contacts me will remain anonymous.  Anything you tell me, I will quote as anonymous.  If you prefer that what you write NOT be quoted, please be sure to tell me that.  All names and/or places you tell me about will remain confidential.

I don’t know what can be done, but it seems to me, from some of the stories I’m being told, that something needs to be done/created to help all involved.  Maybe you know of resources that have helped, maybe something you’ve tried helped, maybe there was something/one helped you.  If any of you know of anything, please let me know.  Any and all information is appreciated.  Maybe just talking about what’s going on in a safe place is a start.  You can also write in the comments section anonymously, if you prefer doing that.

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Posted in Autism, Parenting, violence

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Justifying Actions

Posted on September 9, 2013 by | 20 comments

I just wrote an angry rant.  As I was getting set to publish it, someone tweeted me about something unrelated.  They wrote that in order for people, who may be feeling desperate, to hear what you (the universal/general you) have to say, there is a need for kindness, and it stopped me in my tracks.  Kindness…  In my fury I had forgotten all about kindness and I felt like a balloon that had just been popped. Pfssssst…  All that lovely anger that was protecting me from all those other feelings I have, oozed out.  Pffffffssssst.  And you know what I was left with?  Sadness.  Overwhelming sadness and something else.  Fear.  Tremendous fear.

Sadness and fear do not make me feel powerful.  Instead they make me feel vulnerable.  I don’t like feeling sad and vulnerable.  I want to feel powerful, but all of these things are illusions at best.  Just because I feel powerful does not make it so.  Just because I feel vulnerable does not mean I am.

Someone wrote on a public forum that they were heart-broken over a mother who tried to kill herself and her child.  They followed that thought with this, “she was given a burden she could not bear” and I felt like someone had kicked me in the solar plexus.  You see, I take those words personally.  They may as well have said that they believed that about one of my children.  Please, please, do not say a child, any child is a burden.  Even if you believe this to be true, do not say those words in public.  Do not.  This is what private support groups are for. This is why people see psychiatrists, psychologists, counselors, this is why we call close friends whom we love and trust and who we know will honor what we say in confidence and keep what we say confidential.  In moments of terrible pain all of us can and do say things that upon further reflection we wish we hadn’t.  We think things we do not really believe in moments of upset.  We may even act on these things that we think and say, these are the times we wish we’d said and done nothing.

Not every feeling must be acted upon.  Not every thought needs to be said out loud.  Please, when you say someone’s child is a burden and that it was too great to bear and that this was why they tried to kill that child, it places a stigma on all our children.  This kind of language terrifies me.  I am terrified someone who believes Autistic children are a burden will come into contact with my child and treat her accordingly.  Please if you believe Autistic children are a burden, if you feel their neurology makes them inferior, do not go into the field of autism.  Do not convince yourself that you will be able to help that person, you won’t.  Feeling sorry and pity will not help or make that person’s life better.  In addition, when we believe another person is a “burden” it is being suggested that there are situations when it is acceptable to not be held responsible for what we say and do.  It is being suggested that, to hurt someone we believe is a burden, or worse, take that person’s life, is a reasonable thing to do.  It’s not.  It’s not okay.  We cannot, in our desire for compassion, allow this to ever be okay.   It is not okay.

Finally, if you truly believe someone, whether it is your child, someone else’s child or just in general, is a burden, please talk about these feelings and thoughts with a professional or someone you trust who can help you work through these beliefs with compassion and care.  If you do not know where to turn or do not understand why this kind of thinking is problematic, email me privately so that I can try to better explain or can find someone who will be able to explain this in a way you can hear.  My email is:  emmashopeblog@gmail.com

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Posted in Autism, fear, Parenting

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Memories Evoked

Posted on August 30, 2013 by | 18 comments

I enter the subway car.  To my delight there is an empty seat near the door.  I sit, rummage through my bag for my book and begin reading from where I left off, but the words are blurry and I cannot concentrate.  I am aware of a powerful odor emanating from the person seated next to me.  I close my eyes and try to concentrate on breathing through my mouth.  My stomach clenches and my eyes begin to water.

I’m five years old.  Mrs. Williams is rustling about in the other room.  The pain in my chest is as much from the ache I feel because my parents have left on their yearly trip as it is from my fear of the woman who has been hired to take care of us for the next few weeks.  Mrs. Williams with her coiffed hair and antiseptic smell, everything about her is no nonsense, business like, a kind of grim resignation that oozes from her every pore.  When angry she uses her hand, like a paddle, it comes down swift and seemingly without emotion, as though the pain I feel upon contact has nothing to do with anything: arbitrary, remote, senseless.

I hate Mrs. Williams and my anxiety and sadness that my parents have left us, even for only a few weeks adds to my hatred of her.  She crinkles and rustles when she moves, her skin hangs from her body like an ill-fitted suit, she smells of soap and perfume that make me nauseous.  She is stocky and seems well rooted to the ground, her movements are steady and purposeful.  She rides out the time my parents are gone like a convict doing time.  I can find nothing pleasant about her.  Just thinking about her fills me with fear.   Her dislike for me and my sister is all the more apparent when my brothers are around as she obviously dotes on them and shuns us.  If ever there is a dispute, it is my fault, no matter that I am the youngest with siblings a full eight and six years older than me.   

We are told she had a son sent to Vietnam who never returned.  We are told it is because of this son that she adores my brothers.  I take this information in stride.  It is fact.  I am representative of something unwanted, something I do not and cannot understand.  She is particularly concerned about my bowel movements.  She takes note of them, even going so far as to stand guard outside the bathroom listening for sounds of success.  As I sit on the toilet I imagine her ear pressed to the door.  Why this is important is something I can’t figure out, but that it is, is evident by the reports she feels compelled to give my older siblings.  Now my brothers and sister are on high alert.  My bodily functions are examined, discussed, they have become a topic.  The more I am closely observed the more  anxious and fearful I become.   

I grip my book tightly and try hard to breathe out of my mouth. I glance over at the woman next to me.  Her eyes are closed and I realize she is asleep.  As the train careens through the darkness, her body sways with its motion.  The train turns.  She leans into me, the smell of soap, antiseptic, and some other odor I cannot identify, but that reminds me of those weeks once a year when my parents left us in the hands of someone who should not have been caring for small children, is over powering.  She is unaware of me or the memories her presence has evoked.

I think of my children.  I see the look of anxiety on my daughter’s face when she says, “No, not going to Katie’s class.  That is the old school.  Emma goes to new school.  Emma goes to new school with Mommy.”  And all I can hope for is that her new school will not be staffed by anyone whose presence gives her cause to remember them decades later with anxiety and a feeling of plummeting through an endless darkness.

Visiting the new school

New School

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Posted in fear, Parenting, sensory issues

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There Once Was A Girl (Cont’d)

Posted on August 14, 2013 by | 10 comments

The first part is ‘here‘.

This woman, who was once a girl, learned a great many things once she stopped trying not to feel.  This was a huge surprise to her as she believed she already knew a great deal.  She learned that people terrified her for they were capable of doing tremendous harm and she came to realize she had spent many years avoiding all people as a result.  Most of her pain in her adult life came from the expectations she held and not from the actual people or things they did or didn’t do.  She learned that no one person could ever be all she wanted and hoped for, but that a group of people could.  She learned that a community with a shared goal was more important than individual grievances and that her ego often pushed her from the path she’d chosen.

She met a wonderfully, flawed human and together they had two beautiful children.  With each child her world expanded and grew.  She often reflected on all she’d learned during those terrible years of her earlier life and tried her best to apply what she was learning to her new life as a parent.  But her youngest child, a strong, independent, baby girl who held an uncanny resemblance to her mother had a dreadful time tolerating certain feelings, sensations and the world.  She could not communicate through words and her mother watched her in helpless despair as she saw herself, her early self, her former self reflected in her child’s upset and frustration.  The mother would do anything to take that pain away so her daughter would not have to go through what her mother once had.  The mother would walk to the ends of this earth if it meant she could alleviate even some of her daughter’s massive physical and emotional discomfort.

And so, without even realizing it, the mother veered off the path laid out for her by so many others.  She did not begin using substances again, but slowly over time, she found herself moving away from one of the key tenets of her new life –  she began to believe she had power over another human being’s neurology and that she knew what was best for another.  Instead of helping her child, she began to fight against her child.  She did not think of it in this way at the time.  She thought she was fighting FOR her child and for many years this is what she told herself and others who asked.  She was fighting for her child and it was a noble fight, she would go to her grave fighting, and, by the way, in fighting she avoided a great many feelings.  She did not know this at the time, but in fact this is what happened.  And while she was busy fighting and desperately trying to keep all those messy feelings at bay, her child was hurting and feeling increasingly separate from her mother, (we cannot know this for a fact, but in retrospect the mother sensed this to be true).

More to follow…

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Posted in Addiction, Autism, Parenting

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Encouraging a Sense of Self Worth

Posted on May 28, 2013 by | 16 comments

When I was in eighth grade I had a “Wellness” class given by a classmate’s mother who had been a child actor and model.  The boys were separated out and taken to (presumably) a similar class given by a male equivalent. (I have to wonder now, where exactly did they go?  Who was the male equivalent?  At the time, I never thought to ask.)  All the eighth grade girls sat in a circle on the ground in front of this woman who stood before us in all her coiffed, fine featured, perfumed glory, wearing an oh-so-chic, red pants suit (this was the early ’70’s) and looking like she had just walked off a shoot for the cover of a fashion magazine.  (Which, in fact, she had.)

I felt completely inadequate in comparison and all the more so as I sat listening to her glowing accounts of what she did for exercise, the wholesome meals she ate and her disciplined daily use of various emollients.  I remember falling into despair as I listened to her, not only because I didn’t know what emollients were, or couldn’t imagine a life that did not include glazed jelly doughnuts, but because everything about her was foreign to me, forget that hers was not a life I had ever thought about having, let alone wanting.  But as I sat there I was aware that I should want to be just like her.  She represented all that was beautiful and unobtainable and I, in direct contrast, represented all that was wanting.  I’ve never forgotten her.

When I gave birth to each of my children, the one thing I wanted more than anything else was to make sure they never felt ashamed of themselves.  I wanted to make sure they felt supported, loved and valued for who they were, exactly as they were.  I wanted to be sure I cheered them on, to model for them kindness, generosity, compassion and good work ethics.  I swore to myself I would do my best to respect them and to listen to them.  And then we were given Emma’s diagnosis and suddenly those goals took a back seat to the goal of her being “mainstreamed” and “indistinguishable from her peers.”  Those two goals rammed up against my desire for her to feel self-love, self-acceptance, self-worth.  For a couple of years I lost my way.  In my desperation I allowed others to dictate what I should do and what I should want for my daughter.  I forgot that my early goals for her were more important than anything else.

I began to look for an Autistic adult who I could imagine my daughter might be like.  I wanted to find someone who might represent a possibility of what I might expect.  I read what books I could find, written by Autistic adults, but concluded these adults were much “higher” functioning than my child.   It wasn’t until later that someone pointed out these adults who had written and had published books, were at least twenty years older than my daughter and therefore had more than twenty years of learning, experience and growth that my daughter had not had the advantage of.  Undeterred, I kept looking anyway.  Even when I found someone who seemed to have similar language challenges, their upbringing differed greatly, their interests led them in other directions, I could never quite imagine my daughter growing up to be just like them.

Searching for Autistic adults who might be a version of my daughter was grounded in a desire to calm my fears.  It was a misguided attempt to comfort myself.  By saying – well this person is speaking so clearly, able to have their needs known and heard, therefore perhaps my daughter will be able to one day do the same, I was hoping to quell my worries.  A shared neurology with random people does not mean anything more than it does to compare my shared non Autistic neurology with the same. Without meaning to I was replicating that “wellness” class over and over only now it was my daughter I imagined sitting cross-legged on the ground looking up at someone she would never grow up to be like.  This or that person is not an adult replica of my daughter any more than that woman teaching the Wellness class was an adult version of me.

I want and hope my daughter will feel empowered to be who she is without amendment.  The best way I can ensure she feel empowered is by listening to her, honoring her, celebrating and embracing her, exactly as she is in this moment.  I must give her the support she needs to communicate,  show her the different methods she can use to communicate so she knows she has choices and believe in her.  And there’s another piece to this, which is this – my issue of self-worth, with not being that fine featured, delicate nosed, thin hipped, flat chested version of ideal woman I grew up believing meant happiness, is mine to work through and not my daughter’s.  This may seem obvious to many of you, but it is something I must remind myself of.  I have to ask myself often, is this my issue or hers?  Comparing Emma to adults, to any adult is most definitely my issue and it is one I am trying hard not to pass along to her.

2012

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Posted in Autism, mother/daughter, Parenting

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Rethinking Unhappiness

Posted on May 3, 2013 by | 42 comments

I was alerted to an article written by Dr. Michael Oberschneider entitled, Ask Dr. Mike: Expecting and Anxious About Autism.  In the piece he writes, “Some of the happiest parents I know (both personally and professionally) have children on the Autistic Spectrum.”  In the comments section people weighed in with their thoughts.   Many parents wrote of their outrage (and a few of their disbelief) that Dr. Mike suggest “happy” parents of Autistic children even exist.  They seemed to equate happiness with a lack of concern.  A number of parents suggested that Dr. Mike was simply wrong and refused to believe that he could actually know such parents.  One person went so far as to suggest he was trying to trump up more clients, which is an interesting idea, but the logic of that argument eludes me.

Before I go any further, I have to say this – there was a time, not so very long ago – when I was one of those parents who was incredulous that anyone could be “happy” and have an Autistic child.  I no longer feel that way and the reason is, I stopped trying to cure my child of herself.  I feel sad that this was my experience.  I wish it hadn’t been.  I know it negatively affected my daughter.  I know it negatively affected my entire family.  I know now that the depression I felt was because I believed I could cure her.  I was angry, I was depressed, I believed that no one could truly understand.  I felt alone and isolated in my sadness and rage.  I was engaged in a war only to realize I was fighting myself.  I know this now, but I didn’t then.  I wish I could hit the rewind button and do it over differently, knowing what I know now.  But I can’t.  I have to move forward.  In moving forward I am aware that I owe it to my daughter to make a living amends to her for my past mistakes.  Mistakes that I cannot know and will never know how badly they impacted her. Part of my living amends to her, beyond trying my best to be the best mother to her (presume competence) that I am capable of is to counter the negativity and fear that continues to swirl around the very mention of autism.

Today I am one of those happy parents Dr. Mike mentions.  I have two beautiful children, one who happens to be not autistic and one who happens to be Autistic.  And yes, there are times when I worry about both their futures.  There are times when one of them does something or is going through something and I find myself concerned.  Concern is one of those feelings, like worry, that actually does not help my child.  These are things I feel and it is up to me to figure out what to do about them.  Are there actions I need to take that will help my child get through whatever it is that is troubling them or causing problems?  Are those problems something I can control or are they things that require patience, compassion, love and support?  What can I do to accommodate my child so that they might better cope with whatever is going on?

The single biggest issue I confront repeatedly with having a child who is Autistic, with unreliable verbal language, is the misinformation, the fear, the misperceptions and the ignorance of those who meet her and what they then assume because of what they see.  Fear coupled with ignorance = prejudice.  We fear that which we do not know or understand.  We make judgments, we believe ourselves to be superior, we then behave accordingly.  None of this helps anyone.

It makes me sad that I was once so unhappy and that I attributed my unhappiness to my child.  I know now this was not true.  It wasn’t my child who made me so unhappy, it was my perception of her and what I believed that meant that caused my unhappiness.  I assumed things about her that I now know are not true.  They are not fact.  What is true, what is a fact is this:  My Autistic child is far more capable than most people give her credit for.  My autistic child does not use language the way most people expect.  Through a great deal of hard work and over the course of many years my daughter is learning to communicate through typing.  She has proven repeatedly that she is not only aware of what goes on around her, but she is extremely intelligent and capable.  At the moment she requires support to communicate, though we believe she will not require that level of support in the future.

My happiness or unhappiness has nothing to do with either of my children or my husband or my marriage.  My ability to feel joy is an inside job.  It takes work to excavate all those old beliefs, to throw everything you think you know and believe and start over.  I encourage anyone who is suffering and believes their suffering is directly the result of their child’s neurology to examine their beliefs.  Throw it all out.  It isn’t serving you and your suffering isn’t helping you help your child.  Isn’t that ultimately what all of this is about?  Aren’t we all trying to be the very best person we can each be?  Isn’t that what we hope and want to model for our children?  Isn’t that the point?

April 2013 – With my beautiful friend Lauri, another “happy” parent 

A & L

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Posted in Autism, Parenting, presume competence

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“Autistic People Should…”

Posted on February 23, 2013 by | 10 comments

Today is “Autistic People Should…” flash blog day!  Please take the time to read these terrific posts by Autistic people who are blogging in to change the current views by non-autistic people of what Autistic people should or should not do or be.  Autistic people are taking these three words today and making them their own.

The Autistic People Should… Flash Blog

To give all of you an idea of what comes up if one types “Autistic people should” into a google search box at the moment ~

Yeah.

This has to change.  WE can change this, all of us, together, by spreading the word, sharing the flash blog link, tweeting the posts.  Let’s help change the way we think about autism and Autistic people.  We ALL benefit when we work toward ending oppression and respecting every person’s right to exist.

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Posted in Autism, Blogs By Autistics, neurodiversity

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A Mess, A Mom & Marriage In That Order

Posted on July 19, 2012 by | 18 comments

Mess of Me

I was a pretty messed up teenager.  I quickly developed into a very messed up twenty something, who progressed into an even more messed up thirty something.  Taking a breath.  Whoooo.  I’ll spare you the gory details, suffice it to say, I was a mess.  Another breath.  I don’t think I’ll get a great deal of argument from those who knew me then.   In fact, it took me until I was 36 to realize I was far too old to be so confused and such an utter mess.   I found people who had also once been where I now found myself, some worse, some not as bad, but they reached out and pulled me up.  Because of them I learned how to reach out to others.  I learned how to ask for support.  I learned to take suggestions.  I learned how to make amends, not apologies, amends.  I learned that in order to feel better I had to behave better.  I learned that the most important thing I would ever do in my life was to become the type of person I admired and those people all had one thing in common.  They were kind.

Becoming that person meant learning to do small thoughtful acts.  Remember I was a mess.  Doing the obvious, was not my strong suit.  I couldn’t suddenly transform myself into someone else, I had to learn to look for things that I could do to help others.  In the beginning it was things like holding the door for someone, giving up my subway seat to someone else, holding the elevator doors open for someone just entering the building instead of madly jamming my index finger at the “close door” button.   I had to learn how to refrain from letting out an exasperated and audible sigh when someone annoyed me, (still working on that one) I had to learn that sometimes saying nothing was better than saying something. This may sound like common courtesy, but I live in New York City, where holding the elevator doors for someone or relinquishing your subway seat brands you as crazy, (exaggeration) in addition I was a mess, remember, which automatically trumps being polite, thoughtful or kind.  By behaving in a way that engendered smiles and utterances of gratitude I gradually began to feel better about myself.  By helping others, mentoring other people younger than me who were also having a tough time, but who now saw a person they wanted to emulate, I began to feel I was worthy and living a life of value. I learned how to be a part of a larger group and that while I often craved solitude, I found I needed community.

About two years after I was hit with the realization that I was far too old to be such a mess, I met Richard.   We decided we wanted children, had Nic, got married, had Emma and suddenly there we were, five years later, after I had that moment of dawning awareness that there must be more to life than what I’d been living.  So yeah, I’m not a great role model in how to graciously and elegantly enter adulthood, easily taking small manageable steps until one day there you are with an infant, a toddler, and a husband.  But I had a little road map, a kind of guide-book with rules and suggestions, not literally, but figuratively and I was continuing to work on how best to behave in any given situation.  I had phone numbers and emails of people who helped me and of the people I helped too, so I felt fairly certain I could handle whatever might come my way.  But parenting is unlike anything else.

Despite what some people might think, okay strike that, no one is thinking this, but it works as the beginning to the next sentence,  I was not given a super hero’s cape along with matching Lycra body suit with the word MOM in dayglo colors emblazoned across the chest when my son was born.   I did not, after 38 hours of natural child-birth suddenly find I could dash into arbitrary enclosed structures, don my supermom costume and reappear in all my lycraed, daygloed glory with  powers of insight, lightening quick reflexes and the infallible ability to intuit what my son needed and wanted at any given moment of the day or night.  Ditto when my daughter, Emma was born.  No handbook came with either child, carefully guiding me through their very specific needs and issues.  Nic cried and held his small hands over his ears when a siren went by or the subway came to a screeching halt in front of us, Emma screamed from internal discomforts none of us could see for the first few months of her life.  Who knew?  We certainly didn’t.

We humans, we come with baggage.  Some have more than others.  Me, I came with a couple of steamer trunks, but I also had that well-worn guide-book from when I was such a mess and couldn’t figure out whether it was better to keep sleeping or wake up and do something.  It was and is my lifeline.  It’s expanded to include lists of blogs, twitter contacts and Facebook friends all of whom I can reach out to.   You see, I now have hundreds of people I can interact with and these people are my community, my tribe.  Sometimes we behave badly, sometimes we don’t agree.  But I know hiding is no longer an option.  Checking out doesn’t work.  The only way out is by staying in.  I know I’m not alone.  I’ve learned that it’s perfectly reasonable to not know or understand something and this is something I have learned from my Autistic friends, the beauty in asking for clarification.  It’s okay to not understand as long as you are willing and want to understand.

There is a great deal of talk about Autistic children.  There is a tremendous amount of fear that if we miss that critical period of our child’s first five years, all is lost.  But we humans have a tendency to grow and progress throughout our lives.  Some perhaps more than others.  I cannot speak for others, but I can speak for myself.  I am not the person I was in my teens, my twenties or even my thirties.  I figure as long as I keep my mind curious, my ideas open to alternate views and continually engage in conversation I will not stop progressing.  There is always hope.

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Posted in Autism, Parenting, social networks

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