World Autism Awareness Day: An Ordinary Life

If movies and television are to be believed, it would appear most of us who have children with challenges spend their days trying to find a cure, putting that cure—whatever it is—into practice and generally being unselfish and saint-like. Interviews of Celebrity Moms from The View to Ellen prove those truths. In the media, Celebrity Moms leave no stone unturned looking for a cure or an answer, look great, write books about said cure and have their nannies to help them—doesn’t everyone?  It’s an unrealistic view and it doesn’t help anyone in the real world. And in that real world—the world in which you and I live —no one could spend that much time doing what is purported they do without having scads of help.

When Our Kiddo was a young child, most of my days were taken up with ordinary things—islands of busyness with his autism of course—but those day-to-day things which make a life.  When The Middle Boy and The Youngest arrived, I had more of them. While taking him to physicians, I still had diapers to change, laundry to do and bills to pay.  When he was in pre-school, I did my grocery shopping or wrote my Christmas cards and then picked him up. I did research about childhood development while he took afternoon naps or cooked something for dinner, depending of course, if I had had time to go to the library in those days before the internet. I read in bed or when the kids were playing in the park.  I took recycling to the recycling place when I took Kiddo to swimming class. Like moms everywhere, I was a champion multi-task-er.

We can all bustle about but the truth is we are probably not as obsessed as you would think because we can’t be.  It takes energy to raise a child with autism as it does any child and we have to pace ourselves.  Many young parents of kids with autism feel guilty because they are not able to put in the time they think they should. There is a panicky feeling when you can’t seem to do everything you think you should be doing and I certainly understand. We are only human, after all, and only someone with superhuman stamina can live up to the expectations others have about what we should be doing. We can grouse about having to do laundry or any of the sundry tasks life makes you do when you have children—disabled or not–and a home and a family.  I certainly remember being unhappy having to do chores when I could be doing something to help Our Kiddo….but, someone has to do towels.

There is a mood now of how serious autism is.  We must be serious and single minded and self-sacrificing or must not understand the gravity of it. How can you get your oil changed or go to the dentist…your child has autism!  Autism is “trendy” now and I have come upon many young parents resentful of me, of our family, of our choices because they don’t think we did enough.  By that I mean, they think things should be easier for them now because we paved the way.  Our Kiddo should have been cured and research should have been in place so their child didn’t ever have to have autism. We did pave the way, things are better and autism is more in the news by what we did, but it doesn’t seem to be enough.  They wanted us to do more. What they fail to realize is they are in the same place we were 30 or so years ago, having to advocate for our child as well as raise him!

Our Kiddo isn’t cured but we have a good life—an ordinary life–in spite of his autism. What more do people want?

Autism awareness month is every month at our house!

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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!

Clearing the Air Before National Autism Awareness Month

April is National Autism Awareness Month and I plan to do a lot more blogging here during those 30 days.  It’s also a busy month for me, with many professional commitments, personal commitments and even family commitments clogging up my time. But I think it’s important to create awareness and I am making the commitment this year to take out all the stops, just do it and blog at least 15 times on autism awareness. It’s about every other day or so…..it’s a reasonable goal and I think I can do it, fingers crossed!

But first, I want to clear the air and get a few things off my chest. Especially because there are number of people out there…perhaps you know a few……who think there is no need for Autism Awareness or a special month for Autism Awareness and heaven forbid, no need for a World Autism Day (April 2, in case you didn’t know)! These are the folks who love to take the time to remind me how lucky I am and how autism is all a scam. Their lives are so much more important than yours and mine, they feel much more deeply, ya know. My late Mother used to say there were always people around who played a giant game of *can you top this*. Autism is never *bad* enough for these guys and whatever is happening with them is ten times worse!

So pull up a chair, get out the popcorn and watch Your Autism Cuppa vent for all she’s worth!

To My Mother-In-Law: I know you love Our Kiddo, I really do, and I know you want to help.  But having a son with Dyslexia is NOT the same as having a child with autism. Your dreams for F had to change but he was able to have a job (in construction, not the profession you wanted for him)and a family and Kiddo will never be able to have any of that. I long ago came to grips with it, why can’t you? And why do you have to keep nagging me about it?

To My Sister G:  I am not lazy because I chose not to home school our boys; it was a decision we made and does not mean we were going along with the crowd. Having a child with autism, we wanted  professionals working with him.  We moved where we finally did because of the excellent, nationally recognized special ed program as well as gifted programs for The Middle Boy and The Youngest.  I had regular bedtimes for my kids not because I was the *Nazi Mother* you thought me to be, but because The Kiddo needed structure. Three little kids screaming for ice cream at 2 am, like yours did, seemed stupid.  And no, Kiddo’s hairline is NOT CONSIDERED LOW and it does NOT mean he’s retarded, it just means he has his Father’s hair.

To My Sister-In-Law with the Perfect Kids: Your kids always needed to be the center of attention. They did tricks, imitated television commercials, elbowed  and pushed each other down when it was time for the yearly Easter Egg Hunt and were generally loud. They turned out to be loud adults who think nothing of screaming across the table at a formal dinner and who have inflated opinions of their own self worth.  You saw no need to explain The Kiddo or autism at any time while you were raising them and as a result, your children and now your grandchildren have no understanding of The Kiddo, his brothers and our family. Autism is an inconvenience to you so you see no need to invite The Kiddo to family weddings, Christenings or housewarmings. Even holidays when you are hosting you discourage us bringing him….Way to promote Family, folks!  Autism is not so bad, you say.  If it isn’t so bad, why can’t the Kiddo come to your flippin’ barbecue? And does everyone have to call everyone else a *retard*?

To My New Neighbor: When you moved in to our favorite neighbor’s house, we looked forward to getting to know you.  Linda* (not her name) understood Our Kiddo from the beginning and when you moved into her house, we wanted you to understand too. To welcome you to the neighborhood, I brought blueberry muffins and a children’s book about autism over so you could explain to your kids, on your own time, about Kiddo.  So when the police showed up to ask us what was happening, I had to wonder….did you even listen to a word I said about his severe migraines and his screaming in pain?  We are very lucky the police know Kiddo and know about his autism and know about his health issues with migraines (he has passed out in pain several times and we’ve called an ambulance, so they really do know).  What I don’t understand is why it’s okay for your teenagers to be dibbling their damn basketballs on your driveway, under out bedroom window, at 1 am on a Wednesday night. Next time, it might be time for us to call the police!

To Baby Sister K: When you told me you were tired of hearing about autism, I wanted to applaud. You see, I am tired of talking about autism. I am tired of having to explain, yet again, why we have a toilet paper dispenser in our powder room.  I am tired of explaining his migraine diet and why we are doing it and not the other autism diets. And we’ve been doing it since 2008, can’t people remember and do they have to make me feel like I’m taking some sort of consistency test ? I am tired of clarifying, again, what a respite worker is (a babysitter for an adult, often with specialized training working with the disabled) and explaining the day program we’ve had to cobble together because of our state’s piss poor services for adults with disabilities. And when you, with a straight face, complain we are not holding up our obligations to your aging father, I want to laugh in your face; we send money and that’s good enough for right now.  When I don’t have to explain WHY we can’t do something or you take my word for it we would, if we could, but we can’t, that’s when I’ll make the effort to help more. Until then, I’ll be talking about autism.

To My College Friend L: I’m sorry you were not able to get pregnant.  I am sorry you were married to a string of losers who took the best years of your life.   After your fertility doctor told you to forget about any sort of pregnancy, you seemed to think the best thing you could  do after was to call me and scream. You screamed that it was not fair I had children and you did not. You screamed that I didn’t deserve my boys. You screamed I was a lousy mother and a terrible person. When I reminded you Kiddo has autism and being a mother isn’t all it’s cracked up to be sometimes, you screamed back you could have cured him by being much more awesome than me. Really? Are we 21-ish and still making mac & cheese in a hotpot?  The truth is, L, you aren’t mother material, even if your child was perfect. You are selfish and self-centered and only look at things from your own point of view.  And you’re inflexible.  Having children means thinking about another person and putting them and their needs first even if that means putting yourself last.  And being the Mom of someone with autism can mean putting your life on hold for years while you get them the right sort of help and in the right sort of programs.  Sorry, but that’s not you, honey.

To Hubby’s Aunt Felice: When you told me I was selfish for having two more children after Our Kiddo, I wanted to laugh.  Selfish for having two more children?  When I was expecting The Middle Boy, we were only just beginning to think something could be wrong, so why would we not want to have another child?  In the midst of the diagnosis process in the mid 1980s, Hubby and I decided to get pregnant with The Youngest and stay with our plan of having three children, no matter what. And are happy we did.  As far as being selfish is concerned, you have nine children.  I would never venture to say you were selfish for having nine children but perhaps you feel you can say it to me simply because Our Kiddo has autism. When you have a child with autism, people feel they can say anything they want, no matter how hurtful.  But really, nine children? And you call me selfish?

Autism awareness month is every month at our house!