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Dear Mama ahead of me in line

 Danielle Burnett, a mom and blogger with a son on the autism spectrum. Check out more from her blog, Random Acts of Evolution.

Dear Mama ahead of me in line last night at the store,

I get it.

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I saw you, slightly frazzled and exhausted, as you worked out your order at the checkout, keeping that ever watchful third eye on your little boy, with his curly mop of hair and innocent exuberance. I saw HIS energy, and lack of impulse control, flip flopping back and forth, lunging forward to poke me every couple of minutes. And yes, I got it then too.

I noted your exasperation and said nothing, simply smiling at your playful son. When you looked down at the cashier counter and with a sigh, said,"He's Autistic," my heart broke for you. Because I'VE BEEN THERE, and when I looked squarely at you and said, "My son has Autism. I get it," we locked eyes and you said, "Yeah, I thought there was a connection there." You got it, like we ALL do.

You gave a deep sigh and said, "It's been a... LONG... two... years..." Perhaps I should not speculate ON YOUR THOUGHTS, but having SAID those words before, I'd like to THINK that I got this too... the feeling of guilt for having to admit that you are not always superhuman, that yes, the years have been long; for perhaps being frustrated, or worn down, or unsure, or scared, or uncertain, or - yes- even royally pissed off... if that was indeed YOU at that moment, YES. I get it.

It's been two years since Ryan's diagnosis, and four years leading up to it. Ryan's first year of life was relatively uneventful. Slightly behind his older brother developmentally, we were unconcerned, until we began to notice more serious issues. Decreased speech to the point of being non-verbal... Constantly seeking out patterns; at two years old, Ryan could literally sit on a computer for FOUR HOURS. He had near photographic memory for numbers. His physical habits, such as the need to run headlong into the sofa as hard as he possibly could, and the constant need for physical contact, came in waves, directly contrasting the moments of utter "drop out," when he could literally walk in front of a speeding car if you didn't have him in a vice grip, because he just "wasn't there" at that time... it was terrifying.

I remember the difficulty bringing him places, because of my own issues of inferiority as a mother... Concerns that were often reinforced by people's judgmental comments, cruel looks, and having no explanation for it... there was this beautiful, loving, amazing little boy here, that I was in total denial about. Eventually though, denial grew into suspicion, as our parental instincts finally won out. Finally came the guilt, as I realized that my husband and I were in WAY over our heads. The only way that we would do right by our child and get him the proper care and diagnosis he needed was to bring in the experts. And even then,on December 2nd, 2011, as I sat in the Dr.'s office, between my husband Joshua, and Laurel Collins, my son's Educational Advocate and an old dear friend of mine; and gripped each of their hands, I heard the words, "Autism Spectrum Disorder," and dissolved.

And THAT was DAY ONE, two years and one month ago.

I've mentioned the extent of coming to terms with things in previous posts, so I won't be redundant here, but the reason I explain my history to you, my unknown friend, right now, is that in the last two years, I have aged ten, easily. I KNOW FULL WELL, the preemptive strike that many moms take so that people won't not judge unfairly. And perhaps this was the millionth time you've had to say it, and you were sick to DEATH of having to say it... STILL, the manner in which he was behaving is his normal, and I had no problem taking a couple of good slugs to the arm. and when I knelt down to his level and said, "hi handsome boy!" and his face lit up, and he hit me again, this time as a high-five, I saw the relief on your face. I felt it, I know that relief, and I got it.

One disclaimer for ALL READING THIS, Special needs or otherwise. Being an "Autism Mom" for a few years now, has made me more tolerant, in public or otherwise, of every type of child, with the exception, oddly enough, of my own... I still have that underlying anxiety that my three kids are going to be beyond my control. So please, if I seem stressed out or frazzled, or impatient or exhausted, or snappy please try to "GET IT," and not judge me a bad parent... And understand, that this is NOT an apology for my kids, or an explanation. It's strictly an explanation of myself. And it's been a long... 5... years...

As for you, Dear Mama ahead of me in line, I recognized in you tonight, something I see in EVERY Autism Mom that I have ever met. While we all might offer the quick explanation that you did, you did it with a matter of fact resolve, and NO SHAME. And when you said "it's all worth it," I got that too. Applaud yourself for that! Our babies are unique, and will face many challenges, some so great it's devastating, but there is not a single Autism Mom that I have EVER met that doesn't not believe that their child is anything but a million beautiful colors of the spectrum. And though the puzzle might be a million pieces, and sometimes frustrate the living hell out of us, we will keep doing everything we can figure it out, to understand the world they see, a world that so many others will never know. We recognize this. Be proud. WE GET IT.

Originally posted at http://www.autismspeaks.org/blog/2014/03/26/dear-mama-ahead-me-line

Mom's Awesome Letter to Cyber Bully Who Called Son Ugly

 Mom and Teacher Megan Davies Mennes' letter to a cyber bully has gone viral. This bully did not target her directly, he targeted her infant son who has Down Syndrome. OnMennes' Instagram post above, user jusescrusthd left the comment, "Ugly." Mennes took to her blog, Define Crazy, to reply to the anonymous commenter in a post titled, Open Letter to a Troll. It has since been picked up by many online news outlets. Mennes original Instagram post now has over 5000 likes and more than 2000 supportive comments from strangers. Below is an excerpt of Mennes' blog post. 

Since I started blogging about my son Quinn and his disability, I knew this day would come. There’s no shortage of trolls on the internet who hide behind the anonymity of a screen name with the intent to be cruel, and I’ve seen their hostility many times before. In fact, just last week, in the wake of a robbery at the Down Syndrome Association of Houston’s headquarters, in which $10,000 worth of technology was stolen, there was no shortage of ignorant comments on the news story reporting the incident. One user asked, “how will they learn to count to potato?” Another claimed that wasting computers on “retards” was stupid anyway and that the organization deserved to be robbed. These comments, while offensive, simply serve to showcase people’s hate-fueled ignorance and aren’t worth my time. I grimace when I read them, but realize there’s little to be done about such stupidity. 


Photo credit: Megan Davies Mennes
 
I don't want to make assumptions about you, but I can guess from your immaturity and ignorance that you know little about the helplessness that parents feel when caring for a sick infant with respiratory issues. Quinn was sick last week, but was feeling much better by Friday. We decided to sit in the backyard and soak up the sun after school. There aren't many things in this world more beautiful than seeing your recently-ill child light up in a smile, and I snapped a few photos to celebrate his recovery, then posted them on Instagram with the hashtag “#downsyndrome.” I love to look through those photos myself in my spare time because damn if those kiddos aren’t adorable. Of course, you feel differently because you found this photo and left a comment with one simple word: 
 
Ugly.
 
The fact that you find my child ugly is one thing. You are entitled to your opinion. But the fact that you intentionally search #downsyndrome to find pictures to insult (sadly, Quinn is not the only victim of your behavior; I came across many other inflammatory responses) is both childish and sad. Your profile is also full of offensive posts and crude statements, all of which point to your own illiteracy. In one such photo, featuring two kids with Down syndrome and the word “wiitard,” you get bent out of shape because many, MANY people called you on you prejudice. You claim it was a joke and that people should lighten up. But what about purposefully seeking out pictures of our children? What about the fact that a beautiful photograph of my son was tarnished by your hatred? That’s not a joke. That’s cyberbullying... read more.
 
Mennes is so overwhelmed by the support she has received, she took to her blog to give everyone a group hug.
 
In 2012, Autism Speaks partnered with the National Center for Learning DisabilitiesAbility Path and the PACER Center's National Bullying Prevention Center to create a movement toward a bully free world through our BULLY Project. Together with our partners, we released a Special Needs Anti-Bullying Toolkit full of resources and information specifically tailored to parents, educators, and students dealing with bullying and children with special needs.

 

10 Things Autism Parents Wish You Knew

 Kristi Campbell is a semi-lapsed career woman with about 18 years of marketing experience in a variety of national and global technology companies. While she does work part-time, her passion is writing and drawing stupid-looking pictures for her blog Finding Ninee, focused on finding humor and support for her special needs son. For full article please visit http://www.autismspeaks.org/blog/2014/04/01/10-things-autism-parents-wish-you-knew

10 Things Special Needs and Autism Parents Wish You Knew:  

  1. People don’t need to feel awkward when they’re around my son. Yeah, they may need to treat him a little differently, but I wish they wouldn’t be weirded out.
  2. Not all autism is the same.
  3. People seem to think that because my son isn’t like the one single other person they know on the spectrum, that he must not be autistic.
  4. These kids love. They need love. They are wonderful and bring enormous joy and laughter to those who love them.
  5. Knowing one child with autism doesn’t mean anything really – they’re all so different. Please don’t tell me my son doesn’t have it because he looks so different from the other kid you know on the spectrum.
  6. Kids with special needs are smart. Talented. Creative, and thoughtful. It may not be obvious all the time – their minds work differently.
  7. If my daughter is making strange noises, feel free to look. She’s just making them because she’s excited. Please don’t stand there and gape at us with your mouth hanging open.
  8. If you see my son in a grocery store, he may be head nuzzling, chewing on the corner of his shirt, or spinning. He’s anxious. I will not scold him, so please do not look at me as if I should. He can’t help how his body receives stimuli. He is trying to cope with the way his body is affected by his surroundings.
  9. From onlookers who think I am not addressing my child’s odd behaviors: I ask for a little empathy. Don’t judge. Try to understand that his environment strongly affects him.
  10. Please accept our kids the way that you assume we will accept yours.

 

The Problem with "Age-Appropriate"

This post is by Liane Kupferberg Carter, a mother of two adults. Her son Mickey has autism. Liane is a journalist whose articles and essays have appeared in more than 40 publications. As a community activist, she has worked with both national and local organizations. 

This piece originally appeared on autismafter16.com. Autism After 16 is a website dedicated to providing information and analysis of adult autism issues. You can read the original post here.

For years, therapists have urged us to encourage more “age-appropriate” interests. We have. But at 21, Mickey is still drawn to Sesame Street characters. His bed is piled with so many plush toys there’s no room to roll over. He sleeps with a large Sponge Bob pillow.

I’ve come to wonder if wanting him to be more age-appropriate says more about our comfort level than about Mickey’s development. Keep reading...

Learning Styles and Autism

'Learning styles' is a concept which attempts to describe the methods by which people gain information about their environment. People can learn through seeing (visually), hearing (auditorily), and/or through touching or manipulating an object (kinesthetically or 'hands-on' learning). For example, looking at a picture book or reading a textbook involves learning through vision; listening to a lecture live or on tape involves learning through hearing; and pressing buttons to determine how to operate a VCR involves learning kinesthetically.

Generally, most people learn using two to three learning styles. Interestingly, people can assess their own interests and lifestyle to determine the ways in which they obtain much of their information about their environment. In my case, when I read a book, I can easily understand the text. In contrast, it is difficult for me to listen to an audiotape recording of that book -- I just cannot follow the story line. Thus, I am a strong visual learner, and a moderate, possibly poor, auditory learner. As far as kinesthetic learning, I am very good at taking apart objects to learn how an object works, such as a vacuum cleaner or a computer.

One's learning style may affect how well a person performs in an educational setting, especially from junior high on through college. Schools usually require both auditory learning (i.e., listening to a teacher) and visual learning (i.e., reading a textbook). If one is poor at one of these two ways of learning sources, he/she will likely depend mostly on his/her strength (e.g., a visual learner may study the textbook rather than rely on the lecture content). Using this logic, if one is poor at both visual and auditory learning, he/she may have difficulty in school. Furthermore, one's learning style may be associated with one's occupation. For example, those individuals who are kinesthetic learners may tend to have occupations involving their hands, such as shelf stockers, mechanics, surgeons, or sculptors. Visual learners may tend to have occupations which involve processing visual information, such as data processors, artists, architects, or manufacturing part sorters. Moreover, auditory learners may tend to have jobs which involve processing auditory information, such as sales people, judges, musicians, 9-1-1 operators, and waiters/waitresses. Read More...

 

Original Article Written by Stephen M. Edelson, Ph.D.

For full story visit http://www.autism.com/understanding_learning

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