April is the Cruelest Month

Back in the days before Autism had an awareness month, I loved April.  I loved the newness and the green smells and the budding of the trees here in the Midwest. I loved watching daffodils and tulips peek out of the earth before they sprang up in all their glories. I loved the noticeable lengthening of the days and the sunshine on my face, giving me a glimpse of what May and June promised to bring. I loved watching the rain come down, in light showers or in downpours, and leaving the grass green in its wake. But now April is Autism Awareness Month and I am often taken off guard by what that means.

April was not always National Autism Awareness Month. The first official autism awareness month was October.  It is the month of my birthday and it was fine with me to have Autism Awareness Month in October.  But October is also National Downs Syndrome Awareness Month and the autism community didn’t want to share their awareness with another developmental disability. Also fine with me. So National Autism Awareness Month was shifted to January.  That lasted for a few years.  January is right after the big winter holidays and we were told by those in the ASA office it was difficult to get people enthused about autism awareness right after the holidays. And so April was designated as NAAM and it has been for 20 years or so.

I suppose the reasoning for choosing April for NAAM is because the weather is usually better across the USA and there is more time to plan something great when school begins in late August or early September for  April. We can have Walks and do things outside for Awareness and it’s easier to travel.  Our Kids are in the swing of school programs and many teachers and administrators are inclined to do things as part of an established curriculum for Autism Awareness Month, both for our ASD kids and their NT peers.  Pennies are collected, puzzle pieces art is displayed and Best Buddy programs are highlighted. It’s always fun to see what our local ASA chapter comes up with every year or what autism books will be part of the National Autism Awareness Month at our village’s library.

It’s a bit melancholy for me, having April as NAAM.  I’ve always thought of April as a new beginning, a renewing of life. And it is.  But knowing how far we’ve come and where we still have to go for awareness and acceptance makes me want to cry.

Every month is Autism Awareness Month  at our house!

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The Sleepless Sisterhood

For Laurie and Ellen

 I read many child rearing books when I was pregnant.  Being the eldest of six, I knew what to expect about diapers and feedings and teething but was worried I wouldn’t be the Perfect Mother I dreamed about being. After Our Kiddo was diagnosed with autism and all hope of perfection was gone, there were many things I felt no one else could possibly be experiencing.  I was ashamed and did not know where to look to ask questions. There are still no parenting books for children with autism, at least, not the kind I wish there had been when Kiddo was young.

What I wanted was a Dr. Spock-like tome, to tell me what was normal for a child with autism, what was normal simply because he was 7 and the wisdom to know the difference.  Dr. Spock told us to trust ourselves because we know more than we think but for a parent of a child with autism, or any disability, how could we know anything?  Where is our Dr. Spock?  I wanted to have an expert tell me to trust my gut and be creative but there wasn’t a book like that anywhere.

With normal mothering, the generation before helps the young mother, not just with advice, but with building her confidence and self-esteem and perhaps some babysitting. No mother or aunt or sister or cousin came before me parenting a child with autism.  I felt alone and afraid and a failure.  How could I explain Our Kiddo’s feces smearing to my sister-in-law when her kids were so perfect?  How could I explain to my mother the reason I was so tired was because Kiddo hadn’t slept for days and was why I was taking a nap at 11 am?  Whom could I ask about perseveration and flushing unripe pears down the toilet so often I knew where my plumber vacationed every year?

I dreamed of a scenario—a kitchen table–where parents of younger and older children and adults with autism gather.  There is coffee and tea and a great big bowel of M&Ms.  There is laughter and some tears, handholding and grateful thanks.  And we all leave the table; if not happy, then comforted, knowing others have gone before us and others follow us and accept our help.

Some autism-related behaviors are so unspeakable, so unnerving, so disgusting and exhausting; no one talks about them at all.  It wasn’t until Our Kiddo was school age and I met other parents, I felt a little better. Joining a parent support group, I begin to share.  The sharing began in frustration to show others how “bad” I had it but I didn’t know other parents had the same problems. Once it came out, relief came and a sort of camaraderie—a very odd camaraderie—began.

Many of us are ashamed and disgusted and terribly hesitant to ask other parents for help with our children’s feces smearing but many have had this problem.  You don’t know it until it is blurted out. Then the gates open and we babble, grateful to know we are not alone and begin to make jokes about poop with the only other people in the world who can understand and not be disgusted.  I was stunned to know these weren’t unique problems.  I see the same look and hear the same tone in young parents now when I first tell them they are not alone.

I knew a child with autism who had to see a train—or wait for it–when crossing a certain set of railroad tracks. It sounds “charming” but the mom and dad had to wait for a train to pass, each and every time they had to cross those tracks several blocks from their home, or be subjected to a screaming, flailing fit.  They kept a train schedule for both the commuter train and the regular freight trains so they could avoid or not avoid those tracks. Going to the grocery store or park or school or grandma’s became a plotted out adventure and exhausting. And yet, this is “normal” for many families with kids with autism and would be nice to know something similar can be part of your child’s behavior. And it isn’t unique to your child or because you are a bad parent.

Rituals of any sort can be frustrating, such as the child who HAD to ask everyone to name greeting card companies instead of saying “hello”.  What do you do?  When does it become something maddening?  Those parents would try to tell new people he would meet beforehand about this “quirk” so they could be prepared. They insisted he “allow” people he knew only one or two companies and be done with it–“you know Grandma knows more than two, Justin!”–and would give strangers a laminated list to read, which he allowed, when meeting the first time.  It was through frustration and many difficult situations they came up with this solution, a good one in my opinion.  It would be nice to have a boilerplate solution in place to start with but who could predict this?

Autism is a spectrum disorder and while those of us with lower functioning children or higher functioning children can complain about the other not understanding, but the truth is, sometimes there is overlap with quirks. Between all the other things, dealing with behaviors and odd quirks make our lives a challenge no matter the functioning level.  We are tired because our children have not slept with any regularity for years—and I mean years.  The higher functioning kids can fall back to feces smearing if there is a change in their lives or a frustration. The lower functioning kids can sleep well for years but illness or some little change can derail their sleep pattern.  It takes a well thought out behavior plan to get them both back on track. And it is normal.

We—and our children—are more alike than we are different.  We all know the frustrations of this disability and even share our solutions with each other. If we let them, other parents can be our biggest allies and our best friends.   After all, we all belong to the same Sisterhood.

Every month is Autism Awareness Month at our house!

Coming Out of The Frig for the Month of April

I have a child who has autism. I suppose he isn’t really a child, but a man. I’ll let you in on a secret–having a child with autism is not the end of the world.  It is difficult, that’s for sure, but loving Our Kiddo and doing the best we can for him has been the easy part. He’s a happy guy and we are grateful, knowing our work with him has paid off for the most part. The really hard part of the whole autism experience has been many don’t understand and don’t WANT to understand autism–unless it fits in with their own version. Some have their own agendas and no interest in helping or understanding those of us on the autism front lines. Let me explain what I mean.

The “Refrigerator Mother” theory was the misguided notion of Bruno Bettelheim, one of the early autism “experts” who many believed had the answers for this very puzzling and misunderstood condition. The real tragedy of autism, the difficult part to grasp to those not familiar with this disability or its ramifications, is the blame assigned to the mothers and families of these children.

Bettelheim believed, to simplify the theory a bit, the reason certain young children have problems with communication and forming normal human attachments and relationships was the coldness and lack of nurturing of their own mothers.  Their mothers, he believed, were cold and unable to love their child for a variety of reasons including resentment for having a child.  A mother could seem perfectly nurturing and warm to the outsider, but if her child developed these autistic symptoms, she was really cold and unable to mother her child properly.  We were dubbed, “Refrigerator Mothers” along the way. The theory has been disproved long ago but the fallout still lingers in many ways in the community at large, and surprisingly, in the autism community itself. Today, I’m coming out of my Frigidaire to tell you the real story of autism, the story most don’t know and many are reluctant to tell.

Of course, everyone claims to know Bettelheim was wrong and yet…. if we really did our homework, researched hard enough, sacrificed enough and tried more therapies our kids would be cured.  Since they’re not cured, it’s our fault.  As amazing as it sounds to the outsider, instead of rallying ‘round the young family in their time of need, it is considered just fine to question their motives or throw accusations of neglect at the parent of someone with autism.  We are expected to take it…we have an imperfect child and these well-meaning people are just trying to help.  Deep down, folks still think we caused our child’s autism.  And it isn’t just a fluke or an isolated, flaky neighbor.  It is professionals, parents of other people with autism and your own mother-in-law! Though it is easy to blame, it is nothing we did or did not do that caused our child’s problems; it is autism, and not poor parenting.  When we need the reassurance of those we love and professionals we put our trust in, our parenting and love for our children are called into question.  There is much estrangement in the families of those with autism because it is inconceivable to many, especially in the older generation; a disability such as this can just happen with no one understanding why.  Much time and energy is still spent on blaming the parents, especially the mother.

The blame begins almost from the time we suspect something is wrong with our child.  There is denial on our parts, quite normally, as we decide what to do.  Someone, usually a family member, suggests we are not talking to our child enough or perhaps talking too much.  The accusations of neglect swirl around us and we bring the child in for a first evaluation.  A professional confirms we should be talking more/less and making the child do the communicating. Don’t give him what he wants until he TELLS you what he wants, we are told.  This happened with our child and I can say with authority and all my experience in the autism community, it still happens today.  Even professionals heap the blame on at first–we must be doing something to cause our child’s lack of speech or useful language or odd behaviors.

As we trundle along on the autism road, we try everything we can to help our child.  At first, we want a cure, something to make our child “normal”.  We try things that are standard; we try things that are not so standard.  And we listen to everyone–our families, neighbors and the checkout girl–tell us what to do.  We spend hours and days in a darkened bathroom because it echoes and it is supposed to help our child focus on us and communicating their needs.  We do intensive one on one therapy.  We take the child to speech therapy as many days a week as we can afford and he is taught sign language. Even though he has the ability to hear and make sounds we are told some communication is better than no communication. And we are questioned about the wisdom of sign language by well-meaning family members.  We try other things, like vitamins and other supplements and spend money we don’t have on things we are not sure of.  We eliminate dairy and wheat and eggs and fruit and meat and anything that tastes good and our child won’t eat anything we give him.  When nothing seems to work, we are told we didn’t try the diet/vitamins/darkened bathroom long enough.  And when our families call and ask “is he talking yet?” and we tell them “no”, we are blamed for not trying hard enough.  And we are called selfish for having other children.

At a certain point, we forget about “normal”, and just want “better”.  We fight with the school district.  We fight with the therapists.  We fight with physicians and insurance companies.  We attend workshops, sib shops and autism support groups and discover our experiences are no different from other parents.  We make lifelong friends and stop telling our families about our child’s treatment program.  Every time autism is in the news, we hear about it, and have folders full of articles we have been emailed.  We don’t argue anymore, we just nod our heads and leave the room as soon as possible.  We deal with our child’s autism “melt downs” and challenging behaviors such as feces smearing and not sleeping through the night for days on end.  Our siblings tell us our child seems good and having a kid with autism is no big deal, while their children in the next room talk about “retards” at the top of their lungs.  If we say anything, it makes trouble, so we don’t and die a little inside.  And we are blamed for giving up.

Our autism community is divided because no one knows what causes autism but everyone has their theories.  And there are factions who believe their theory is the only correct one.  If yours doesn’t jive with someone else’s, *they* must be wrong.  The ones who believe autism has an environmental cause pooh-pooh those who believe it to be genetic.  Those who are in the genetic camp distrust those who believe it is caused by vaccination injury……and so on and so on.  We constantly question other parents motives and commitment to their child because of this lack of trust fostered, whether we realize it or not, by Dr. Bettelheim.  We are blamed for our children’s autism because of him and that’s just not fair. Until we, the autism community, understand this, we will continue to have autism tragedies in the news when parents feel hopeless, not knowing where to turn or who to turn to without being judged. It is not the same in other disability communities. The friends I have who have children with Downs Syndrome have such a galvanized community–the same goes for the Cystic Fibrosis community or any number of other childhood disabilities and illnesses.  We are always at each other’s throats and it the reason, I truly believe, we don’t have as many services and supports as the others.

My son is a charming, well-mannered person of whom we are very proud. There has been no miracle cure for him nor are there any crusaders to take up his cause.  He isn’t making baskets for his high school’s basketball team and he is not suddenly speaking after some quirky therapy.  We began interventions at 27 months—early for the 1980s—and he had intensive speech therapy, sensory therapy and behavior therapy and it’s been hard work to get him this far. He makes progress, day by day, month by month, and year by year and sometimes regresses.  We try things and abandon what does not work and forge ahead, just as we have since his diagnosis.  He has improved but he is not cured.  He is a good person, a happy person with skills he worked very long to master. He’s proud of himself as well. We think that’s good enough for right now.  No matter what other people think we should or should not have done.

Want some ice?

Autism awareness month is every month at our house!