World Autism Day: Light it Up Black and Blue?

By Kim Stagliano

Today is April 2nd. Some are celebrating Autism Awareness Day. I am not. To me, today is like Good Friday and Yom Kippur - somber days of reflection.  

Above is a photo of my daughter's leg. She has autism. A week ago, I put her into the bathtub, and while undressing her - was visually assaulted by these two angry red scratches - parallel, as you can see.

I touched them. She winced. She did not say to me, "Mama, I hurt myself doing such and such."  I held back tears and examined her wounds. Did she scrape against something sharp under the kitchen table? I've been feeling under surfaces ever since, trying to find the nails or screws that bit into her tender flesh. 

I have no idea how my child was so badly hurt. She was at  home all day. She can not speak to tell me. My daughter has autism.

Take a look at her leg. The scratches. The black.

The BLUE.

Kim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A Kat Cavicchio romantic suspense is on SALE for $.99 as an ebook and is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

 

Comments

[sandra budde]

Kim...I am in the process of reading your book...All I Can Handle. I cannot even imagine what you and Mark go through each day. My grandson is almost 6 and is nonverbal. I will go to my grave believing that the vaccine he received on day one set him up for autism injury. Thank you for speaking out for our kiddos. I hope that your daughter's leg is getting better. So sad she can't tell you how it happened.

Sandy

[chantal Sicile-Kira]

My heart goes out to you and your daughter. Even though Jeremy can type, he can't always 'feel' pain or where he is hurting, so something can be going on medically for months and I only know it after because of his behavior.

There is nothing worse than seeing your kid hurt.

Autism awareness is every day....

[AussieMum]

Kim,

My 10 yr old, non-verbal son manages to receive scratches and bruises that cannot be explained.

On Sunday the 1st April we (hubby, son & I) participated in the Autism Awareness Walk. The local paper (The Courier) was present, I have attached a link.

When you read the article, take a close look at some of the comments. You will be "dumbfounded!"

Elizabeth Gillespie

P.S My comment managed to be first off the rank and the hubby is posted as PS.

http://www.thecourier.com.au/news/local/news/general/lake-walk-raises-autism-awareness/2507618.aspx

[melinda Alleyne]

My son went through years upon years of self abuse ... his sores were gaping, open, puss filled most the time ... It was tragic. Filled my heart with sadness ...

I know how difficult it is to not be able to ask what happened ... or why are you doing that ..

I don't celebrate world autism day at all ... I pushed world action day all day today ... made a few mad .. just don't care. Light it up blue ... heck no. Light it up black ... yep.

[Cindy Howard]

Kim, I feel very similarly. Today is a day of reflection. The world is "aware"; now we need solid governmental action. I am sorry to learn about your daughter's leg injury. ♥ (Hugs) As one who has suffered with OCD-driven self-injury, particularly during my teen years, I will suggest that even fingernails (persistent scratching) can cause injuries like this...

[chantal Sicile-Kira]

"For all of us parents and grandparents of children with autism EVERY DAY is Autism Awareness Day"
Ed and Maureen Yazbak, you are SO right!!

[Rich]

Kim,I feel your pain and I worry about the scratches and pain on the inside of my son that I cannot see. Maybe with all the recent additions to the autism club the tide will change or if not in a few years when the autism rate is 1 in 10 big pharma will be unable to pay the politicians enough to look the other way.

[Gato G., remember me?]

I hate that helpless feeling. I hope you find the answer soon. God bless.

[Janet]

Exactly, Dr. Yazbak! And Kim, I am actually relieved in a strange sort of way that the scratches happened at home...if she came home from school with them I know I personally would be beside myself with worry. Yes our kids suffer from physical pain often, but when injuries are (possibly) caused by another person, the psychological trauma it causes is beyond comprehension.

[antoinette fawcett]

Our 3 1/2 year old son has high functioning autism. We were the lucky ones. GFCF & supplements proved to be an absolute miracle for us. We still have bad days, my right arm has pretty deep gashes when he attacked me while dressing him last week. I know many of you have tried everything and still can't pull your children out. My heart breaks so hard for you--sobbing as I type this. Thank you for loving your children, no matter what. It angers me that the statistics are 1 in 88. That's old news. Stats are from 2002. Someone did the math on a CNN blog and he believed statistics from this year (2012), if the rates continue the same rise: 1 in 44. We are the only voices for our children. Again, I praise all of you for hanging in there. Parents, grandparents, other family members. Thank you for loving our children!

[jen]

Today I worked subbing in a class with 6 kids with autism- 5 boys, 1 girl (7- 10 years). Only two have some words, the rest none. Three seem to be kids whose parents are fairly new to Canada. Anyways, today the hot water tap didn't seem to be as toned down as usual and it's just so scary that these kids could be burned and not be able to say anything. One poor little guy screamed/cried for an hour on and off and tried to shove his hand way down his mouth and we wondered if he maybe had a tooth coming in. Two tried to bolt at different times. Really, though, they did very well for the first day back from spring break but it does break your heart to see that they can't really communicate what is wrong so much of the time. I think one little guy was being hard on himself for not getting the actions/words in the song the teacher was doing but I tried to reassure him that he was doing a great job. If that weren't enough, the lunch lady's child is being tested for ADD. and he has some 'graphic/motor integration' problem (ironically her hubby is in pharmaceutical sales). Now, 3 out of 4 of my kids cousins have ADD. No family history. Yep, the new normal...color us all a bit blue.

[Maurine Meleck]

I painted a t-shirt last night just to wear today. It said-World Autism Action Day
1 in every 54 boys has autism.
Scared yet?

Sadly, nobody seemed scared who viewed my shirt. A few Oh's and Hmmmmm's and one lady at Earth Fare said she thinks it's evolutionary.(eye roll). The Augusta Chronicle did NOT print my letter to the editor especially for April 2, While my eye heals and the bubble moves around, it renders everything I see distorted and very slanted. A perfect metaphor for today, don't you think?
Maurine

[Jeannette Bishop]

We don't get as many bruises lately, but my daughter used to throw herself on the floor when she couldn't express frustration, throw herself by jumping up to get a little more altitude into the fall. It seemed like she needed to make herself cry to vent how she was feeling.

She can tell us more of what she needs to now, but it still takes a long time for something to resolve internally for her. It's really not exactly living when she has high anxiety days, more like managing daily an internal emotional war.

[Benedetta]

Matt;
If you get blood from those turnips let us know!
I am so sorry.
Sorry for all of you.
Water under the bridge for me and I don't want to look back but I will share it all --
A nurse practionier (that allowed my daughter with rasping lungs pneumonia to walk out with claims she was fine, then later got on to her for being of low moral character for being on the birth control (14 years old) on it becasue she would not stop bleeding - little foolish nurse practioner )
This nurse practioner and a "lasted only One year only school counselor--- accusing me of child abuse for bruises.

[Diane W Farr]

I was reading through the blogs on CNN. Why do some people think autism is just kids acting bad? Where do they get this idea? I couldnt' imagine being a parent of a severely autistic child reading these comments. I wish I could celebrate that my child is recovered; only I have tears and sadness for the one's that aren't. I'm happy for those parents that can embrace autism and see autism as a blessing. What's not fair is those people condemning me for not accepting it! I am treated like I stole a potential greeter at Walmart and giving the world another lawyer that we don't need. I would like to think I'm part of the solution by not burdening our society with a child that needs services. Instead, the people that embrace autism treat me as a traitor.

[Donna L.]

I don't think the world will ever fully comprehend how we live on a daily basis.

Awhile back, I noticed my son limping slightly when wearing his shoes. When he took them off later, I looked at them closely and noticed they were both stuffed with those wads of paper they stuff into brand new shoes. Idiot me had somehow neglected to remove the paper stuffing when we bought them. He wore those shoes - each one halfway stuffed with paper - for three months straight before I figured it out. He never complained (he can't), he never imagined that he could just pull the paper out.

Light it up blue, my ass. This has to stop. Now.

[Holly]

I am an emotional wreck today too. Our non-verbal 11 YO son had an especially bad weekend where he did not need to sleep and giggled nonstop while running full speed thru the house (yeast or Adrenal fatigue--not sure). I have played detective too many times to figure out how he got bruises and scratches. He busted his head one time and had to get stitches. By playing detective and watching him for 2 whole days, we finally figured out how he did it. His body is so damaged and out of control but they will never show that on the news. It is all-around sad and the awareness BS is like salt in an open wound.

[Aimee Doyle]

When my son was an adolescent he went through a period where he was extremely self-injurious. He hit his legs so many times he had permanent bruises and much of the hair fell off. He was also physically aggressive to others and would hit us (his family) so that we were black and blue.

After a decade of biomed, we had to resort to medication, because nothing else worked. Even now, he hits himself on the chest multiple times when he is anxious.

[Leslie Phillips]

Andrew appeared to me one day with his brand new, permanent tooth broken in half. I have no idea how it happened. My friend who is a dentist told me it must have been painful. He didn't cry, didn't come to me. At some point, he said something that led me to believe he had fallen and hit the marble bathroom countertop, but I will never really know. Three years later, his tooth remains broken. We can't do dental work on him without general anesthesia, which costs $1,500, just for the sedation, and is not covered by insurance.

[First do no harm]

Matt,
I hope you sue the school system into oblivion.

[Tim Kasemodel]

When Thomas was young and we fed him gluten and casein he would be bruised from head to toe and we would never know how - he could not feel pain or hot or cold, so he was giggling and laughing....

He FEELS the pain now. When his gut hurts (or tooth, or head, or toes, we have no way of knowing) he hits his elbow onto his thigh extremely hard. We are taking photos of this self injurious behavior to our "celebration" at the Minnesota Capital.

We will be speaking about the not so fluffy end of the spectrum and about the autism that you don't sere on the six o'clock news, and we are not holding anything back - except for maybe the poop pictures - don't think they are ready for that.

[Jen]

Got my bushes lit up with blueish white lights for the while day. Javelin been especially vocal about vaccines lately, too.

[Anne McElroy Dachel]

This is the hidden side of autism. News reports always show us the smiling kids interacting with a therapist or playing on swingset. Autism never looks really bad.

Can you imagine if on World Autism Awareness Day we got to see a mother changing the diaper on her 20 year old son?
How about a child banging their head on the table in frustration? Let's have a look at a house with locks on every door because the child living there wanders. Or a nonverbal daughter's huge scratches.

We never hear about daily ordeal faced by a new huge group of Americans---the families living with autism.

Anne Dachel, Media

[Lisa Look Adams]

This happens with my son, too. I tell him, "I'm so sorry you got hurt." My heart feels black and blue.

[Nancy Bernotaitis]

Kim-it hurts my heart to see those wounds. Sam, too, has had unexplainable injuries. He once cut his heel so bad he needed stitches. I searched the house for scissors, anything that could have done it and never did find a thing. He couldn't tell us where or what had happened. I've accused my husband and Sam's grandma of making Sam terrified of the bath. I've taken photos of wounds he comes home with. I don't trust anyone with my 14 year-old baby. ANYONE. I worked with a little autistic girl who bit me so hard, I had a softball sized bruise on the inside of my arm. Light it up blue indeed. I've seen too much blue already. How about some action?

[Matt]

Ironically, today Is Liam's first day back to school after 108 days. He was taken by his school aide alone into a sensory room (not on his IEP) and emerged with both front teeth broken out down to the root. The aide claims that he fell from the sitting position off a platform swing no more than 6 inches off the padded floor with such force that his missing teeth were never to be found.

[Gayle]

Kim, my son has done similar things to himself out of frustration. We are living the autism nightmare every day, not just on Autism Awareness Day. Wake up America, this is a crisis that is not going away!

[Benedetta]

Donald Trump;
Went all out for us Fox Friends thim Monday Morning!
I think he ambused Fox's Friends; I don't think they expect it.

[Blue Bruises]

Last weekend my non verbal teenage son in a moment of frustration and aggression pinched the thin skin in the inside of both my arms as I was helping him dress after a bath. He's been struggling with constipation - I am assuming that was what caused the moment.

No way of knowing for sure.

I had similar thoughts about the -Light it up Blue campaign as I looked down bright BLUE bruises on my arms.

[F. Edward Yazbak & Maureen F Yazbak]

For all of us parents and grandparents of children with autism EVERY DAY is Autism Awareness Day
Ed and Maureen Yazbak

[Chuck Hancock]

Thanks Kim, for making me cry at 8:03 am, on this BLUE day.

[John Stone]

Kim,

Yes, we are all very familiar with the modern officially sponsored strategy of being silly for a good cause. It is a very good way of anaesthetising people against tragedy, and it is not always a good thing - next day the media circus moves on, a few coins in the fountain and almost nothing has been achieved.

I notice that World Autism Day is being virtually ignored in the UK media - no one is reminding them: are our powers that be now haunted by a bloody spectre?

http://www.youtube.com/watch?v=wu-rE6Nc0QI

Last week, Autism Speaks (US) issued a press release with estimated annual cost of autism in the UK of £34b ($54b) which still has not been reported in our country. No press release here.

John