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!

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autismcuppa

Your Autism Cuppa is written by a longtime Autism Mom. A former Autism Society of America local chapter president, she is an educator and artist and has done inclusion consulting work for over 20 years. Married for 36 years to the father of her Three Sons, the eldest having autism, she wants young parents to know they are not alone. Life can be fun!

7 thoughts on “Clearing the Air Before National Autism Awareness Month”

  1. Ok I read this three hours ago and have been thinking about it since then. Some of that time has been spent writing my own list of people and conversations up in my head. It is awful that anyone has to address these issues with people but sadly it is so VERY VERY true. As much as people want to think autism awareness is no longer needed, it is so very much needed because of all the situations you just wrote about. Your journey started in the 1980s and mine is now over 30 years later and I am having these same conversations with people so yes, awareness is still needed. I am looking forward to your posts this month. I have learned and been inspired by your journey and I think your knowledge and experience needs to be shared.

    Liked by 1 person

  2. Things are about the same, if not a little bit worse, I think as far as awareness is concerned now. Back in the day, no one knew anything about autism or any of the parts of the autism spectrum. Their stupid comments and lack of understanding was from pure ignorance. Now, people Google stuff and think they know everything or have only heard one point of view and think its the whole story when its not. Their lack of understanding is from sheer arrogance. My Mom used to say arrogance and ignorance are a dangerous combination and she was right!

    We have a 12 year old nephew who also has autism. He’s higher functioning than The Kiddo but my BIL and SIL heard the same stuff from the same kinds of ignorant professionals we did. They were sheepishly talking about it when AutismNephew was almost 3 and just had been diagnosed. My mouth dropped open when they said they couldn’t imagine we were subjected to those kinds of comments…..and when I said we were told to do the EXACT SAME THINGS they were, they couldn’t believe it! They thought things had gotten better but no, they really are the same. 😦

    Liked by 1 person

  3. Wow. As if you don’t have enough on your plate, you have all this to contend with too? You, Cuppa, are a-maz-ing!! I feel so luck to not have come across too much ignorance so far, and have an amazingly supportive family too.

    Liked by 1 person

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