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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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!

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!

A Modest Proposal

Today I read an article in my local *newspaper of record* about the new Sesame Street character, Julia (or is it Julie?), the little girl with autism.  This wasn’t the first time I read about the Sesame Street character but this article spoke of why they chose to have a girl character, why they created her more for autism awareness for NT kids and a few other issues. Now  let me be clear…I am grateful for all the autism awareness on television from Sesame Street to Parenthood to The Big Bang Theory.  I think the characters are interesting, if a bit sanitized for the general public.

But back in the day, when “Rainman” came out, there was a bit of belly aching from some in the Autism Community for lack of realism but I was grateful there was a movie with a character who had autism!  I actually knew the Mom of the person the Rainman character was based and the character’s behavior was based on a real person with autism, so why some criticized the lack of realism I never  understood. There have been other movies since with characters who have autism, again, sanitized and  perhaps a bit romanticized but……again, I’m just happy Our Kids are represented in the cinema.

Anyway, today over my morning coffee, after reading that article, I got to thinking…..instead of having a character with autism on a scripted show, wouldn’t it be more interesting to have real people with autism on a reality series? So here is my proposal:  Make it a cross between “Survivor” and “Big Brother”  and  perhaps a little, “So You Think You Can Dance?” Instead of parents of kids with autism, make the contestants extended family members of people with autism (I’d like to nominate several of my In-Laws), arrogant special educators and para-professionals (nominated by parents of their students), neighbors of families with an autistic family member and those older ladies in Target and Costco who think they  know how you should handle your kid when he has a melt-down in the middle of the store.  And of course, we can’t forget those folks with perfect children who are so precocious you feel inferior just standing next to them.  I’m sure most of you have several people you would happily nominate!

I imagine there should be about 25 contestants to begin with, in a lovely perfect house, with lovely and perfect furnishings…and part of the *goal* of the show would be to keep the house and furnishings lovely and perfect! We would start out with 5 kids, beginning with one or two newly diagnosed (perhaps 2 or 3 years old but a newly dx-ed 10 year old might be interesting),  one or two elementary school age and then a boy (has to be a boy) entering puberty.  The children with autism should cover the spectrum but a *night time howler*, a *feces smearer* and someone non-verbal should be included. It goes without saying they should all be on different diets. As contestants are voted off, a new child with autism will join the house, and each child will be slightly older until there are at least three adults with autism (covering the spectrum) as well as the children.

While the children are at school, the contestants will be expected to clean and cook and if there are any problems at school, they will be expected to drop everything to handle the problem. They will be made to feel guilty if they are not able to fly  right over even if they are in the middle of cooking something needed for a special diet which will be ruined if they leave it.   After school, they will be expected to shop, run errands as well as take the kids to any therapy or extra-curricular activities. All this will be happening while trying to keep up with their own jobs via phone, text or email.

As each new person with autism joins the house, the jargon will change….IEP will stay the same but *Staffing* will become *M-Team* and ASD (Autism Spectrum Disorder) will become plain ol’*autism* etc.  The contestants will not be notified of the changes and will be expected to figure it out contextually.  And as the new autistic people join and are older, contestants will be expected to find adult day programs and the funding for the adult day programs.

Did I mention there will be surprise inspections which will be part of the elimination process? And those Inspectors will be the *voted off* contestants who will feel free to criticize their former colleagues…LOUDLY! I’m not sure what the ultimate prize should be at the end and I’m not sure how I would *pitch* the idea to begin with.

But I do know when someone tells me they understand my situation or can empathize or thinks it’s all Rainbows and Unicorns, I want to tell ’em if they think it’s so easy or they could do a better job, they can take over any day.  The “So You Think You Can Survive Raising a Kid With Autism?” show would be a great outlet for those folks. But it’s not practical…..they wouldn’t last a day!