Saturday, May 16, 2015

Dreaming Again

One of the saddest things about my initial reaction to my children being Autistic is how I perceived my dreams of the future. I believed what I was told about Autism and I believed my dreams of motherhood were shattered. It did not take me long to figure out that I had been wrong. I was wrong about Autism, and most of those dreams were unfair. They were painful expectations I never had a right to hold. 

I cut those old dreams loose and replaced them with faith in my children and their lives unfolding as they should. It was hard to dream after that. I was afraid my dreams weren't big enough, or maybe they were so small they would hurt me again down the line. Worse would be if they hurt my children. I tried to keep my mind open, expect little, and to be present. Close to my understanding was the Toni Morison quote “If you surrender to the wind you can ride it.” I surrendered to my real life. 

It has been like riding the wind. Where I first was, was low, so low. Waking up to the truth about Autism has been an ascension. Acceptance liberating. Appreciation enlightening. And love, it's the heaviest thing, but I've been lifted by it every time. Lately, the ride seems so free, my motherhood dreams come easier. They've honed in getting closer to reality. They've become fair, both confident in my Autistic children, and open enough to stay afloat. They are achievable now. Wiser. I've become a better dreamer.

Some of the old dreams, the ones that weren't unreasonable expectations, have managed to live on too. A while back I got to read Stewart Little to the boys. They hung on every word. This was something I had pictured before Autism, before they were born. I dreamed of sharing that particular book with my future children. It might have taken us longer, it might not have been the route I expected to get there, but the dream lasted and it was fulfilled. I did not take it for granted. 

Reality, life, and my motherhood are often beyond my control. The lesson of surrender stays with me. My thoughtfulness has grown to include unknown possibilities. I can better discern between the fair and unfair, yet allow my mind float dreamily along. These gains are what I pack with me this morning, as we approach another opportunity for a dream to come to fruition. I'll tell the story once it's true. 

I once perceived my grand and all encompassing motherhood dream as broken, but it was only in my imagination. I cut the sadness of my mistake loose to make room for reality and to hold a space for all good dreams too. 








Thursday, May 14, 2015

Poem: Autistic Child to Mother

Never let them tell you the Autistic child is void of heart. If they do, and it hurts, cherish every moment that the Autistic child defies. Revel in the rebel. The following poem is from my son, Ty. And I am the luckiest mom in the world.



Mother,

When I'm in my teens,

Twenties

Thirties

Forties

Fifties

Sixties

Seventies

Eighties

Nineties

and one hundreds,

I am going to say

"Thank you mother for my brother and my brother's brother being a kid".



Tuesday, May 12, 2015

Radical Acceptance and Love: #AutismPositivity2015

 



Being a writer has been my good fortune in the Autism community. When I began to record our journey here, I did so because I thought that we were traveling in a direction unknown. Most of the parents of Autistic children I first encountered while searching for answers and support followed the belief that their child needed therapies, remedies, and miracle cures. I wanted to walk in love. I wrote that down. I was fortunate because though I felt alone as a parent, the Autistic community started trickling into my life. They were already walking in love. Radical love. They gave me some.

As things went on, I came to understand that Autistic people were in a battle for basic human rights. Sharing the joy and comfort my acceptance has created in the relationship I have with my children was important, but I realized my writing is significant to more than just our family. It allowed me to share parts of the Autistic story. They don't want therapies, remedies, and miracle cures. Autistics want acceptance. It is their right to be included. It is their right to govern their own bodies, minds, and lives. It is their right as human beings to be treated with respect. "All human beings are born free and equal in dignity and rights" and that means Autistic people too.

The general public is so overwhelmingly afraid of Autism, the acceptance I have learned to give my children is often portrayed as extremist. I do what most parents do. I love my kids. Mine are Autistic and suddenly my love becomes inconceivable. The record I keep here is deemed deviant. Eccentric. Indulgent. I must be mad. But, it's the distance between the wrong and right, between fear and acceptance, hate and love, that dictates my rebellion. Justice is just too far from reality. Simply asking that my Autistic children's rights to equality and dignity be honored, makes me an activist.

That disparity, those rights withheld are what put the radical in Autistic love. Imagine giving what has only been denied of you, or, accepting yourself while the world is afraid of who you are. What we offer the disabled is less than they deserve. What we take away is shameful. Refusing to respect Autistics as competent and worthy human beings is our indecency. Each action taken by them to oppose this repression is an act of love. Love for themselves, for their people, and love for those of us so far far behind. Radical love. Get some. I write on.


The preceding essay was written for the annual Autism Positivity Flashblog. The theme 2015 is Acceptance, Love and Self Care. Join the celebration with positive perspectives of Autism on Facebook, Pinterest, Tumblr, & Twitter!




Monday, May 4, 2015

Reflections on the Movie: Refrigerator Mothers

I shared a clip of the movie "Refrigerator Mothers" a few posts back. A friend recommended I view the full film found here. Before discussing this documentary further, it is important to acknowledge that there are problems with language and outdated misconceptions throughout the movie. I do not want to critique it in that manner, but I encourage those interested in language to read Neurodiversity: Some Basic Terms & Definitions from Nick Walker. Aside from these issues, these are valuable stories of raising Autistic children in the 1950's 60's and 70's.

In this time period, Bruno Bettelheim was the leading Autism "expert" and his work remains an indelible dark spot in the history of the Autism community. In particular, he is responsible for the concept that a detached, cold mother, causes a child to become Autistic, hence the name "refrigerator mother". The spread of this falsehood has shaped the fate of every Autistic person since.

His theories on how to "cure" Autistic individuals were based on removing the child from the home, in essence institutionalization, so that the child was away from the source of injury and could then rebuild a new life for themselves. Parents were shamed into surrendering their children because they were told, by Bettelheim and the society that believed him, that it was all their fault. He took Autistic children from their mothers.

The movie features seven families with Autistic children (now adults) and specifically the accounts from the mothers, as the title suggests. Each woman tells a tale of facing extreme prejudice while seeking help for their child. They describe the Doctors focusing on them and their supposed psychological flaws as opposed to their Autistic children's disability. They share the agony of being blamed.

One mother discussed the years of "therapy" she went through, where a host of fabricated and damning attributes were assigned to her through psychoanalysis. She also told of the ever enduring pain she experiences from the maltreatment her and her then child were given. That dark spot from Bettelheim remains in her heart. Though he has long been deceased and discredited, she lives on with that burden and so does her daughter.

The children, separated from their family and housed in Bettelheim "schools", were given chilling treatments like the "isolation technique". Just as their parents were taken away, all toys and things familiar were stripped from them. They were left in their room alone as "therapy". No playing. No education. However, Bettelheim did boast of providing a statue, a life size maternal figure, so that the children had an object to take their frustrations out on.

Time and experience taught these mothers better. I was moved to hear one mother in the film mention Autistic culture, which is so far beyond the era of "refrigerator mothers" it's remarkable. I remember how significant the concept was for me when it first came to cognition. Autistics are a people. Another mother explained how she was driven by this madness to become an activist. I relate all too well. Things have changed but not nearly enough. These mothers, my predecessors, teach me.

When I reflect on the impact that Bettelheim and his portrayal of Autism created in the history of Autistic people and their families, it reminds me of the modern day power of characters like Andrew Wakefield and especially the influence of mega-org Autism Speaks. Bettelheim has been discredited and the "refrigerator mother" myth has been largely put down. But, society has not yet recognized the damage these present day Autism "experts" generate.

It is still the mother's fault when we claim Autism is caused by vaccinations, for it is her that subjected the child to these toxins. It is her that exposed baby to the chemicals. It is her that refused to breastfeed or dared to simply breath air as humans do. She must find the cure, the detox, the missing piece of the puzzle, or she will once again fail her child. It is still her fault when Wakefield is an Autism "expert".

And the Autistic person is still suffering from society. Autism Speaks stigmatizes them with depictions of Autism as tragedy, making the general public afraid instead of accepting. They schmooze congress to enact oppressive "therapies", as if all Autistic children deserve the right to these abusive "treatments". The "expert" Autism Speaks, like Bettelheim, directly harms Autistic people and their families.

It has always been ironic, the Autism community and beyond. We perceive Autistic people as lacking, while we are stuck in our narrow thinking. The way we shame and blame. The unhealthy treatments we offer. The "experts" we create, while discrediting Autistic input. The way we are all so cold, so void of empathy, so self-centered, that we can only project these flaws upon Autistics. Piercing and painful irony. It still hurts.

Tipping my hat to all those deemed "refrigerator mothers" and to all the present-day parents of Autistic children too. May the likes of Bettelheim, Wakefield, and Autism Speaks be buried in our wake.


Wednesday, April 29, 2015

My Sister's Mother

She was just a girl when I met her, sixteen I believe. She'd already been through hell. Raped, forced to carry the baby, forced to give him up, smashed through a windshield, disfigured, without a home. It was that version of hell. And she wasn't done with it either. She was pregnant again. This time from my father. My angry, intoxicated, violent father. That is how she became my sister's mother.

I was four when the baby was born. My sister's mother showed me how to bottle feed her, how to wrap her in blankets, how the faded toy blocks on her diapers meant that she needed a change. While she was passed out on god knows what, I took good care of my sister. It was a filthy trailer we lived in, smelling of mold and cigarettes, but there was a little family there. She was no angel, still, she was a mother, and I saw love in that home. I promise it was there then. I felt it.

When my father came home it was a different story. Sure you might find him reasonable during the day. Not by night. I heard them screaming in the back bedroom while I stayed on the couch with baby sister. I heard things I would like to forget. My sister's mother must have done something wrong, but I couldn't figure out what. We had been home together, taking care of the baby and boiling chicken and potatoes for a dinner that he never came home to. I was too young to realize that it didn't take doing something wrong to get your nose broken. She came crying to me.

A few years later, my father found her with another man. He nearly killed them both. Left my sister's mother for dead with a punctured lung, and he served seven years for it. While she was in the hospital for an extended stay and he was in jail, they signed the adoption papers. She hadn't much choice but it cut. She let her second baby go too. It haunted her. Her name became spit from the mouth of my grandfather. Yet, we were still taken to visit our father in prison on Saturdays. He could be forgiven. Not my sister's mother.

She took him back even after all that too. Maybe she needed him by then. Maybe she had been broken once and for all and couldn't hold herself together alone. My father and my sister's mother went round and round over the years. They always came back to each other. Even last year, when she found out she had cancer, she asked to come live with him. On that same piece of land, but in a trailer worse off. He said no for once. He had just gotten out after serving 15 years, and his place was no where to care for a dying woman.

Yesterday, she did die. I wonder if my father knows because he is locked up again and words travel slowly through bars. Grown up baby sister was grasping at anything she could to understand, with all the unrest of a daughter left behind twice. It could have been the cancer. It might have been the drugs. For sure she lived a life of pain and abuse, and I know there is only so much one life can take.

My sister's mother, I hope like hell, death is better to you than this life was.

I hope you went softly.

I hope you have finally found some peace.

Tuesday, April 28, 2015

To the Parents of Newly Diagnosed Autistic Children

When my children were newly diagnosed with Autism, I reacted in a way that I wish I hadn't. Through my heaviest tears though, I looked up at them. They were reading picture books. I was miserable, and they were at happily doing what children do. I was crying, while they waited for me to sit and play. I was a mess, but they seemed just fine.

I could not see my children with tears in my eyes.

They were waiting on me for more than just play. They were waiting for me to stop crying and get back to being mommy. They were loving me despite my mess. I dried my eyes and moved towards acceptance. Without a doubt, it is the best move I have ever made as a parent. So, dry your eyes Mamas and Papas. You've got acceptance to do. It's a lot of work. From one parent of Autistic children to another, I hope this helps.


1. Presume competence in your child.

 Give them every benefit doubt. They are listening even if they cannot speak. They understand. They think. They feel. They are made up of strengths, not the delays written on paper. There will be many people who presume that your child is empty, that your child cannot comprehend, that they are lost, that their input doesn't matter because they are too incompetent to get it. Do not listen. Oppose at every opportunity. Stand by your child even when you are the only one. Believe in your Autistic child. You will never be wrong.


2. Avoid Autism Speaks.

Most quick google searches on Autism lead back to this mega-organization claiming to help Autistic people. The website will frighten you and it should. They despise the Autistic child (and adult). Autism Speaks uses language like missing, burden, and tragedy, to describe the one you love with everything you've got. They forecast the failure of your marriage. Claim you aren't really living. Take money from good people, never returning it to the Autistic individuals needing help. There are many more reasons to avoid Autism Speaks, but don't you let them talk about your child that way. Don't let them scare you.


3. Find Autistic adults.

There are loads books and online information about Autism that has been written by Autistic people themselves. I will include some links at the bottom to get you started. Read these instead of things written by non-Autistic "experts". The information you receive will be firsthand, and far more accurate and powerful than any other resource available. Most misconceptions about Autism are immediately cleared up through their personal accounts. They will help you connect with and support your child authentically. Help you understand. No one knows better about Autism than Autistic people. Listen, listen, listen.


4. Stay away from pity parties.

There are many within the Autism community that like to bemoan the life they have been given in receiving an Autistic child. Of course we parents have an adjustment period, where we must learn to accept our children's disability. However, we do not have to get stuck in the trap of self-pity. This wallowing serves to harm our children. Falling into a false support system, one that makes you feel miserable, not empowered, not enlightened, impedes the process of acceptance. Your child needs your acceptance more than anything else. Seek positivity and love in your support systems.


5. Unpack your own issues.

Though you may not have anticipated your parenthood unfolding in this way, your beliefs and feelings about disability are consequential to your child and family. Our society is deeply ableist, and consistently devalues the disabled person's life. Consider the prejudice and privilege you hold. Are you afraid of the future? You know now how little society cares. Are you ashamed? It's not shameful to be as you were made. Did you dream of the perfect child? Well, your perfect child is Autistic. Work through your problems before they hinder your child and family.


6. Be wary of all therapies and interventions.

Your child will most definitely need support, but there are many services called "therapy" that are anything but therapeutic. If your child cries, has a meltdown, or says "no" with words and or actions, this is a strong signal that something is wrong. If a therapist disregards your child's "no", does not presume them to be competent, or seeks to control their behavior as opposed to understanding it, do not hesitate in pulling them. Autistic children need to feel safe, not stressed. Most "therapies" are based on your child's "deficits". Support is boosting their strengths.


7. There is no Autism epidemic.

Our best science and research points to Autism being a genetic variance. The "rise in numbers" has been directly linked to our increased understanding of Autistic characteristics in young children. There is an all too recent history of institutionalization of the disabled, where many Autistic individuals were hidden from society. Others escaped such horrific fates, but learned to pass at the great cost of their mental, emotional, and physical health. The Autistic adults for 1 in 68 can be found in our families, neighborhoods, work places, and parents often come to recognize Autistic traits within themselves.


8. Neurodiversity is diversity.

The differences in our brains must be the most spectacular diversity of all. Your child might not think like the majority do and that is something that ought to be appreciated, not deemed unacceptable. No great thinker resides in a box. The Autistic life has it's challenges, but our children are sensitive and thoughtful. Some have gifts of intelligence. Some have the will and perseverance of earth shakers. Some see the colors of music. Some have none of these things, though all experiences and expressions of life are valid and worthy of celebration as part of our natural human diversity. Study Autism through the lens of Neurodiversity.


9. There is no cure.

There never will be. We cannot "cure" a neurological divergence and really that's not even the point. Autistic people, by and large, do not want to be cured. They want love and acceptance. They want to live in a world that doesn't want to erase their identity. We are taking about brains, which shape our beings, not limbs to be cut off. To Autistic people, a "cure" means they cease to exist. This is perfectly reasonable considering that much of the "cure" research is aimed at developing a genetic marker that would give mothers the opportunity to terminate pregnancy, or prevent Autistic life. It's a hoax, it's a slippery slope, and the hunt for a "cure" will never help your living, breathing, child.


10. It's going to be okay.

You are going to figure it out. You and your Autistic child, together. The stress will lessen, the communication will grow, the answers will come. It won't be easy. Parenting never is, however, you haven't learned how strong you are yet. Your child hasn't had time to shine. Give 'em a minute. Give yourself a minute. In fact, you have a lifetime. Focus on love, and each chance you get to make a decision in that direction, do. Love it through.



 
Some helpful resources written by Autistic adults:

Kim at Eccentricities and Introspection.

Patricia at Echoes of Mermaids.

Emma at Emma's Hope Book.

Morénike  at Just Being Me...Who Needs "Normalcy" Anyway?.

Landon at thAutcast. His book "I Love Being My Own Autistic Self".

Cynthia at Musings of an Aspie. Her books,  I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults and Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Life

Nick at NEUROCOSMOPOLITANISM.

Ibby at Tiny Grace Notes (Ask an Autistic) and NeuroQueer.  
                                
Amy at Non-Speaking Autistic Speaking.

Ollibean.

Kassiane at Radical Neurodivergence Speaking.

S.R. Salas.

Sparrow at Unstrange Mind. Her book No You Don't: Essays from an Unstrange Mind.

Lei at We Always Liked Picasso Anyway.

Alyssa at Yes, That Too.


Additional resources for parental support:

Parenting Autistic Children with Love and Acceptance.

Respectfully Connected.  

Monday, April 27, 2015

Autism, Lies and Devastation

After writing my last post, related to an advertisement for an Autism awareness event in my area which claimed my children were devastating, I wrote a letter to the editor of the paper that published the add. I wrote it well. I was polite but firm, no my children are not a devastation, and no this brand of "awareness" was not helpful. The letter did not get published. I was not surprised. This morning I received a comment on another previous post of mine, so I went back and re-read what I had written there about parental blame. In that post, I used the word devastated to describe my state of mind upon realizing my children were Autistic. I used the word devastated myself.

I will tell my why and maybe some mother down the road will find a better way.

Probably the same day I filled out the MCHAT, I called a loved one sobbing. I asked her if she could talk, and then it all burst out. I told her about Ty. That he had all the red flags. Things were a blur, but I specifically remember being devastated about the myth that Autistics lack empathy. Of course then, I believed it was true, that my child was incapable of feeling, of connecting, of having the heart it takes to empathize with another life. That broke me. I thought my child would never feel, and I could not imagine how I, the empath, the one guided by heart, the one who feels her way through life, had a child so different from me.

The lie of Autism and lack of empathy left me devastated.

When the boys were six months old, they were given the wrong vaccine. To be clear, this was not a vaccine that has been (falsely) associated with Autism. In fact, it was actually a smaller booster of the shot they were supposed to receive, and harmless, other than we had to give the original shot again a month later. When this happened, I went into a fit of anger and asked for the nurse's head, but no damages had occurred. There was little I could do. My ignorance of vaccines and Autism, combined with this mistake, kept this incident in my mind as I watched my boys grow. Sure enough, Autism. I was so angry at that woman. So angry with myself for allowing a stranger to inject my child with what ever it was that made my baby Autistic.

The lie that Autism is a vaccine injury left me devastated.

Getting back to the post where I originally described myself as devastated, the specific quote:
Mothers! Stop subjecting your child to these poisons! Hold your baby instead of putting them in a stroller made with synthetic materials! I could not always hold my two babies at once. Something I already felt horrid guilt about, as do many mothers of twins. Stop using plastics! As if I could keep my extremely active children safe with out the aid of plastic baby saucers, highchairs and gates. Stop feeding your babies toxic formula in toxic bottles! The shame of not producing enough milk for two. I was devastated.
Again, I believed what I was told. I thought that I had exposed my children to chemicals that caused them to be Autistic. It was something I did. They never left my side so it had to be me. Something I ate during pregnancy? Maybe it was because I had thrown up so many of my prenatal vitamins? Maybe it was the sunscreen that I generously applied thinking it would protect them? What ever it was, I did this. It was my fault.

The lie that Autism is caused by our environment devastated me.

It was devastating to get kicked out of the public library because my Autistic children were "disruptive" to the sanctity that is story time.

It was devastating to be told that my children needed 40 hours a week of therapy and that I was good not enough to help them.

It was devastating to have strangers glaring at us in the parking lot in our most vulnerable moments.

It was devastating to watch my children meltdown in protest while therapists pushed their bodies along as if it was good for them.

It was devastating to hear another therapist joke about putting vinegar in a child's mouth as if Autistics do not have a history of these abusive "treatments".

It was devastating to receive an on the spot diagnosis from a Developmental Pediatrician milking the system.

And to realize that my pain and sadness was because everyone else is lying about Autism, it devastates me still.
That is my why. That's the truth.

It's no wonder my paper didn't publish my letter. They have no reason to believe me and every reason to believe the lies that devastated me. No one opposes. But, I do and I will.

This morning I wrote the above. I am coming back to tell more this afternoon. The paper called. My letter will be published tomorrow. I have hope.


Thursday, April 23, 2015

Not Your Autism Devastation Story

"Every 20 seconds a family is given the devastating news that their child has Autism."


This morning I opened my local newspaper to find the above statement in an advertisement for an "Autism Awareness" event. The fundraiser is being hosted by two non-profits in our community, one of which has the words "Autism cure" in it's name. While people will come out to play games and walk in circles for the devastation that is my family, I find the pity party itself to be mightily discouraging. This is where my children have to live. We walk down the street in a city that cannot comprehend human dignity and that portraying someone as an annihilation is wrong. It's so close, it is home. Not us though. Nope. We are not your Autism devastation story.

When my first child was diagnosed with Autism, I probably could have described my state of being as devastated. I was certainly afraid, definitely sad, and I'll explain why. I felt pain because I was taught to do so. Not only was I taught to fear disability, but I accepted that script for true. Society, from our streets to the Eiffel Tower, instructs us to dread the Autistic child. Claims of epidemic, descriptors like devastating, spreading lies about "cures" just as diseases themselves spread, these things hurt my Autistic children. They hurt all Autistic people. That negative mentality hurt me as a parent too. Every time someone promotes the idea that Autism is a tragedy, mothers like I once was, are lead to pain.

How we as a society welcome or exclude diversity, and disability is absolutely part of our natural diversity, reflects our own limitations. Pitying my children might come easily because that is what we have been taught to do, but it doesn't dissolve our personal responsibility to treat others with compassion. I feel sorry in reverse. It's a shame that Autistic people are not welcomed. It's a shame on us. My children are offered segregated educations, therapies which demean them as robots to be programed, and pity parties disguised as "awareness" campaigns. They deserve inclusion, support, and respect.

If the hosts of this event truly wish to help, they should not characterize the very people they claim to serve in this manner. Good intentions and a good cause do not make degradation permissible. Unfortunately, they are following the lead of many larger organizations who also use fear and tragedy rhetoric to collect funds. Though the money gained in this event appears to be going to a relatively decent cause, the "help" is backhanded. We do not need our communities to feel sorry for us. We need our communities to accept Autistic children and adults because they are citizens, because they have something to contribute, and because they are valuable human beings. Everyone is valuable.

Once I was able to refuse the devastation script for how our lives should go, things weren't frightening or sad any more. My children and I were able to bond on a level that had been inhibited by my fears. I learned to look at their strengths instead of deficits. I realized that they needed support, not to be forced into conformity. They have done nothing but thrive. That is our story. It is hard, I won't deny. Raising Autistic children is hard. It's hard to know that those in my neighborhood think nothing of putting us down. They call it "help" when they call us devastating. It's hard because all good parenting is hard. We rise to the occasion of our children though.

My children, my family; we are not your Autism devastation story.


Image Description: A photo of two children mesmerized by, and kneeling behind, rainbow colored pinwheels. The text reads "Love Neurodiversity". raisingrebelsouls@blogspot.com