Best of: Dan Olmsted on Ian "Check my Buttocks for Lesions" Lipkin
"You Can Never Really Say MMR Doesn't Cause Autism," Dr. Paul Offit

Awareness without Recognition

How farBy Julie Obradovic

I had the pleasure of experiencing an extremely pride filled day this week. In the morning, my youngest was selected to perform for the school’s annual talent show, and later that night, awarded as the overall outstanding student in her seventh grade gifted program. Her father and I were beaming.

I’ve written before about the simultaneous highs and lows parents like us experience on days like that. In the same instance that your heart soars at the accomplishment of one child, it almost instantaneously breaks at the absence of it for another who will never experience it. Her older sister is that sibling.

Other families like ours are going through the same thing right now. The end of the school year is particularly tough for many reasons. Award Nights. School Dances. Graduations. Concerts. Recitals. Art Shows.

Our friends and neighbors paste their social media walls with beautiful photos of their healthy children experiencing these milestones. While always happy for them, it can sting, repetitive photographic evidence of what your child has lost and continues to miss out on.

Would that have been her friend? What dress would she have chosen to wear tonight? What would she look like now if she didn’t lose her muscle tone and coloring? What award would she have received?

The unfairness can sometimes feel overwhelming, and even though you can always turn off your phone or computer to look away for protection, when the stark differences live in your home among siblings, you can never truly protect yourself anyway. I know families with twins for example, one on the spectrum and one not, who live this difference even more profoundly than we do.

While I have come to a place of great acceptance that the milestones she reaches while different are just as admirable, important, and amazing, I came to the stark realization yesterday that the rest of the world hasn’t come to the same conclusions yet.

It hit me like a ton of bricks while waiting to enter the gymnasium for the talent show. Students from two separate hallways were merging into one forcing a group of students to stand and wait while the other group passed. I had to wait as well.

The group waiting with me was from the special education department. I recognized the teachers and aides and waved. They were always wonderful to our family and I was happy to see them.

As I stood there, I scanned their group for the boy to girl ratio, like I often do. True to reported statistics, the boys far outnumbered the girls not only in amount but also in severity. At least three of the boys were profoundly affected by autism. They were staring at their fingers, moaning or yelping out, and rocking back and forth while they waited.

As we made our way into the gym, I immediately became concerned. The entire school had almost entered already and it was loud. Junior high students were competing to be heard while extremely loud dance music pumped through a professional speaker system. The fluorescent lights above us were on at an annoyingly bright level, shining off of the highly varnished wood floor.

Students and teachers were everywhere, janitors and staff rushing around to set up more metal folding chairs, creaking and screeching as they popped open, scratching the floor loudly as they got shoved into place.

I looked to the teachers and aides I knew well, hoping to get their attention. They were across the gymnasium now, too far to notice me staring them down.

“Get them outta here!” My eyes beamed in their direction.

“It’s too freakin’ loud in here! It’s too much! Bring them in when it’s settled down! What the hell is wrong with you guys?”

One of the boys increased his rocking and yelping. Another was covering his ears. One just bent over in his chair.

“Damn it!” I thought feeling helpless.

My attention went to the band directors who were in charge of the music. How could they not know this was way too loud? How could they not realize some of these kids have sensory processing problems? It’s 2017 for crying out loud!

And then I realized, duh. They don’t have those kids in band.

The show got underway, and to my knowledge, no one had a melt down or needed to leave for any reason. Perhaps I was overreacting, I wondered. My mamma bear instincts calmed down for a moment.

And then something else occurred to me. Not a single special needs student was in the talent show. Not a single one.

At home I forgot about my concerns, gleefully uploading a video of my daughter performing Chopin’s “The Minute Waltz” from memory. We’ve been told it’s one of the hardest pieces to learn on piano. She has practiced for months and did it flawlessly. For a few hours, I got to enjoy the feedback from friends and family who watched it.

Only a few hours later we head back to the school. She had been selected to receive an award, they notified us last week. We didn’t know which one, but we knew which one she had her heart set on, and we were hopeful she would win it.

She did. Overall outstanding student.

More video. More happy tears. More smiles. Congratulations from all of the parents we’ve come to know who were sitting around us. For over an hour, all of us got to enjoy the moment of watching our children be recognized for their hard work, success, and perseverance.

And then it hit me again. Not a single special needs child was at the awards night. Not a single one.

While my daughter receiving the award definitely worked hard to receive it, I can honestly say I don’t know a child who has worked harder at everything in life than her older sister.

I don’t personally know a child who has been through more crap in her first sixteen years on this planet than her. Toxic encephalopathy. Loss of the ability to speak.  Loss of muscle tone and strength. Loss of gross and fine motor skills. Years of therapies and treatments. Ear and spinal surgeries. I could go on.

In fact, just as this award show was taking place, she was home doing private tutoring. In addition to school and the homework she gets from there, she does four to five hours of additional work every week. She knows that if she wants to get into a college experience program post high school for students with a disability, she has to show mastery of her baseline skills.

She requested the private tutoring for extra help when she realized she needed more practice. She chose to stay home so she could do that and prepare for a final exam today.

And yet, she doesn’t have a single award from elementary, middle, or junior high school to recognize her extraordinary hard work. Not a single one.

There was no award for overcoming obstacles the likes of which most of us will thankfully never face. There was no award for learning how to write with the wrong hand because one side of her body is now weaker than the other.

There was no award for being a happy, loving, caring child in spite of being bullied, left out, and completely aware of the fact she is different.

There was simply no award.

Because no one is thinking of our children as being the most incredible, dedicated, hard working, inspiring individuals on the planet. But we should be.

And all of them deserve to be recognized for it. All of the parents, like us, who never got an invitation to the awards night, should have had the red carpet rolled out.

If the Language Arts, Math, and Science Departments are giving away awards for excellence in their programs, then our kids should be included in those awards too. If the gifted program gets to award an overall outstanding student, so should the special education department.

Awareness of the special needs students among us has increased profoundly in the last decade, and that’s a wonderful thing. But in my experience, recognition of the amazing accomplishments these kids have achieved still lags far behind.

It’s time for that to change.

Julie Obradovic is a Contributing Editor to Age of Autism and the author of the book “An Unfortunate Coincidence: A mother’s life inside the autism controversy” by Skyhorse Publishing.

Comments

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CT teacher

@Bayareamom & Kim
I'm glad you enjoy reading my posts. I read here regularly but am always a little reluctant to post. Although I don' t have anyone in my family yet with autism, I have lots of experience with vaccine injury ( there may still be some grandkids to come- in
CA of all places.). What I have learned by reading here explains all of the autoimmune conditions I have suffered with since I was a teenager. I am now 73 . I was in that first group of kids to receive the SV40 contaminated polio vaccines. My illnesses began in earnest after the 2nd dose. Doctors, of course, had no idea what was wrong, so my illnesses were pronounced psychosomatic. In my 40's, I began to get some answers and treatment but I never even thought about the shots. My own daughters have various autoimmune issues and my husband was probably one of the earliest cases of ADD. My grandchildren are largely unvaccinated- I boy has had no vaccines - the older boy got the Hep B at birth ( it took us by surprise ) and later 1 HIb. I had been suspicious of vaccines by that time because I saw what was happening in the schools where I was teaching. UP until then I thought it was only thimerasol.......but that Hep B at birth convinced me something was rotten in Peoria. I told my daughter 's pediatrician that he would have to give that baby another shot over my dead body. He got no more, but my daughter was scared of meningitis so she gave 1 HIb- another bad reaction so she agreed to give him no more. We are lucky he is OK, but he has had some issues. Since the unvaccinated boy does too, I am further convinced that vaccine damage is generational- probably damage to our DNA. I look at all established systems with a jaundiced eye, but to me the medical system has done more to destroy us than any of the other murderous systems combined.
Naturally my views are anathema to my friends and to some family members so I have to be judicious with my comments.
I have to say that one of the most heartbreaking things I have ever seen in school was watching and listening to little autistic children coming in from recess, because they couldn't make the transition. I had never seen anything like that in all of my years of teaching. How can doctors continue to watch it?
All of you kind, loving parents of autistic children have my undying sympathy.

Bayareamom

@CTteacher:

..."If kids learn to work together cooperatively they actually learn more by helping others and develop understanding and empathy to boot. It's often the case that the most successful people are often the ones that did not stand out in any way while in school and thus were overlooked at award time.
Every human being has great potential that should be encouraged. Special needs kids would benefit a great deal from a more cooperative school model, in my opinion."

This. Yes. I have never understood the human need for competition. Never made any sense to me. And I came from a family of competitors (athletes). I was always the odd man out, not athletic, nor competitive in the slightest. Wasn't my cup of tea.

When I look at the way our school models are set up, this is one of the issues I see. Not enough of a cooperative model - far too much of the competitive.

The other day, I ran across a quote I LOVED, attributed to a very young actor. I've saved it in my file folder because it made such an impression on me:

“There is nothing noble in being superior to your fellow men. True nobility lies in being superior to your former self.”
– Elijah Wood

I always enjoy your comments here, CTteacher. Thank you for posting this one...

-Kim

annie

I saw in a recent Vaxxed periscope post the great Mrs. Ealy express this same sentiment. I listen and read these words after coming off of banner weeks for my neuro typical children, and I am profoundly moved. My children are neuro typical because of the wisdom that the lives of your beautiful children allowed them to take advantage of. Nothing makes up for the injustice your children have suffered, but it is my hope that when you look at your amazing, beautiful, brilliant children, you also see the thousands upon thousands of lives that they have saved. There could be no greater accomplishment.

CT teacher

I have always wondered about theses awards nights for all kids. Kids are still developing and growing in many ways. They all should be praised and rewarded for what they are achieving. I 've never been sure that it's a wise thing to single out a select few for extraordinary talent and in some cases a lot of overachieving at a young age. We are setting them up to be more competitive. Our schools should be set up,around a more cooperative model, which would do a lot to eliminate bullying for one thing. If kids learn to work together cooperatively they actually learn more by helping others and develop understanding and empathy to boot. It's often the case that the most successful people are often the ones that did not stand out in any way while in school and thus were overlooked at award time.
Every human being has great potential that should be encouraged. Special needs kids would benefit a great deal from a more cooperative school model, in my opinion.

nocposts

Beautiful post, Julie. Same mixed emotions this end of school year. Somehow we turn the corner, beaming with pride in both our children.

Cherry Misra

@ Mark Wax and @ Sally Rubin, Thankyou for your thoughtful and interesting comments. Please keep commenting on AOA

Cherry Misra

@ kws, I think that someone "owns" Jerry Brown, gov . of California. Approximately evry three years he signs a "waiver" allowing California kids to be given flu vaccines with mercury in them. Remember that the 6 month old kids are given TWO flu vaccines to start them off (Maybe start them off on the way to autism) Interestingly, I met a doctor in a government hospital in Calfornia- a pediatrician- who did not know about the waiver. She thought I was just talking nonsense "from the internet" - till I sent her a photo of the waiver- nothing said after that. Isnt that awful- Not only will the doctors be in the dark, telling all their parents that 'We havent used mercury since 2003" but they will say among themselves in the cafeterias that " We stopped the mercury but autism did not go down. " Mercury to pregnant women, ; Mercury to the 6 month old child ; mercury that goes entirely under the radar from fish, amalgam fillings - Lots more aluminium than before, and that makes mercury more toxic- and they cant understand why autism rates are not falling. ...... but actually I think the autism rates are falling ( As compared to the terrible years from 1985 to 2000) - and the cases are milder, (in California) but that truth may not be allowed to come out.

angusfiles

Your right Julie .I found myself thinking last week about my son and all the entourage he has around him including us.It must reach around 20 or more.....more an entourage than Jay lo has for sure! Then I thought but for a young man who has stressed so many people and all these super professional people communicating about him - how can it be so , he doesn't even speak he is non verbal - he has never been able to say a bad word about anybody or even think about it I am sure.. but yet here is causing all this pandemonium amongst the most professional of people-I thought; I wish I had half of your ability and be able to do that and get them to be bothered about MEEE!! - amazing!

Also what I was going to say was that ,Enlightened is Polly and Jon Tommey when they set up a shop called Polly`s place and sell only the goods made by autistic`s - now if your normal you arent allowed to sell sorry you guys that are trained to pass exams - so thats one back for the autistic kids. Absolutely delighted to say that my son has sold many of his strange drawings and paintings..to ambassadors to rulers of countries law advocacy firms..amazing!

https://www.theautismtrust.org.uk/pages/pollys-place-enterprise

Pharma for Prison

MMR RIP

Grace Green

When I was young there was sometimes a prize for the one who made the most effort, or the most progress through the year. Couldn't autism parents suggest a prize for the SPECIAL (ed) kids, at their schools?

kws

Straight to the heart Julie, thank you.

"There was no award for being a happy, loving, caring child in spite of being bullied, left out, and completely aware of the fact she is different."

I'm very proud that my son has somehow endured and retained his humanity. He does have wonderful gifts and I will gladly expend my retirement savings to help him achieve his potential.

It's the leadership in Congress, Merck, Pfizer, CDC, FDA, CBS, and CNN I worry about, for they lost their humanity. They sold my child down the river for a sack full of gold coins. Jerry Brown, how could you sign SB277 ?

Sally Rubin

Hi Julie,

This was a complete "GET." Sigh...

I don't know the answer to this one. I've thought a lot about it, actually. No one can really know what it's like for our kids. I remind my son how hard he's working, that his experience has been more than what most people ever experience in a lifetime. But, yeah... there is no blue ribbon for hacking one's way through the thorny forest of autism et al.

Thank you, as ever, for your beautiful writing.

Sally Rubin

Mark Wax

My beloved Julie, may your always have the strength to march on. We had this part of the journey. It is about to get worse. We are in the "adult autism" years. There are no levels of government that will acknowledge the "value" of your cherished child. We live in a drought of collective spirit for the last several decades. "You are on your own" has somehow become prized. The society will not allocate sufficient resources to even assure the health and safety of the least fortunate among us. I know the anguish of our son being seen as "worthless." But, we have the fortitude to do whatever it may take to carry on. We will dedicate ourselves to the "last full measure of devotion." We will create our own solutions and build a community from a vision. I encourage you to keep your spirit strong. The world your child lives in will be a better place because your never quit making it so. Memorial Day has multiple significance for my family. I will never stop serving. I will gladly trade my life for the future of my son.

Cherry Misra

Thanks Julie for a well thought out and well expressed piece. I too recently attended a big graduation ceremony. Ive always had conflict in my mind about these events. Some kids and parents are so happy, but what happens to the others, the ones who were not invited because they were to receive no award.? I know Im in a minority, so I think maybe Im wrong. This particular ceremony had one unusual element. A father was given a special award, a posthumous award for his son who passed away suddenly. Just a month before - he had been physically handicapped all his life- had to endure some unusual surgeries. An only child . The father went up on the stage- his suit was rumpled from the back. No standing No smiling He took the award and moved quickly off stage. I thought it was rather unkind to invite him to the occasion. He had to endure watching all those bright, smiling " outstanding student " types. I consoled myself by thinking that he is not alone. There are all the autism parents who suffer too. they also sometimes lose their kids. they too probably never get over it all. Maybe if he knows about them he will feel better in some small way. Yet, I know it isnt right- so many kids and parents suffering. Its our new world and I dont think I want to get used to it.

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