Tag Archives: Autism Positivity Day Flash Blog

“Six and Three and Zero”

We are working with Emma on time.  For the last few weeks she has been waking at 5:30AM.  I’m just grateful she isn’t also waking us at 2:00AM.  It’s all relative.  She has an analog clock in her room and we’ve discussed how she isn’t to wake us until 6:30AM.  Two nights ago she appeared at exactly 6:30AM.  “It says six and three and zero,” Emma announced before claiming her place next to me in our bed.

This morning however she appeared at 5:30AM and when I said, “Hey Em.  It’s too early. Look at the clock. Do you see what it says?” she didn’t answer.  “Look Em.  It says five thirty.”  I sat up and pointed.  “You have to go back to your room.  You can come back when it says six thirty.”

“Six and three and zero,” Emma confirmed.

“That’s right Em.”

Moving very slowly, she wandered back to her room, or more accurately, out of ours.  When Emma reappeared later she said, “Make cereal and toast?”  Then she corrected herself, “Dadddy?  I’d like to make cereal and toast, please.  May I have some cereal and toast?”

After breakfast she ran back to find me.  “Mommy!” she said bouncing up and down.

“Hi Emma.  I’m coming out.  I just had to take a shower.”

“Mommy!  I miss you,” she said, leaning her head into me.

“Oh Emmy!  I miss you too.  Whenever I’m not with you, I miss you!”  I told her.

She beamed at me.  “I miss Mommy.”  Then she pointed at me and said, “Mommy and me,” she pointed to herself, “go into the living room together.”

“Yes.  I’m coming.  Do you want to wait for me?  I’m just getting my shoes on.”

“I’m waiting,” Emma said.

I live for conversations like this.  I take for granted so many things, little quick conversations I have hundreds of times throughout a day, and yet, this one with Emma will carry me through the day like nothing else could or would.

Waiting for her school bus.

For my latest piece in the Huffington Post, click ‘here‘
Anyone can contribute! To be a part of the change, contribute to the Autism Positivity Blog click ‘here‘

Imagine What it is Like to be Autistic

The last 72 hours has seen a whirlwind of activity regarding the Autism Positivity 2012 Flash Blog and those words “I wish I didn’t have Aspergers.”  It has been incredible to witness.  To recap  –  A group of bloggers devoted days of their time and energy to come up with and create the Autism Positivity Flash Blog.  They then reached out to all the bloggers they knew, asking for each to contribute something.  New contributions were posted every 15 minutes on the last day of April, with more trickling in after that. I don’t know what the total ended up being, but it was well over 115 contributions.  As a result of their efforts, a whole community of Autistics, Aspergers, Parents of Autistics and Parents of Aspergers were galvanized and inspired to come together in support of any Autist who has ever felt – marginalized, less than, misunderstood, ignored or alone – even if for only a minute.  It was an incredible show of strength in numbers, of people working together, of a diverse and vibrant community uniting and reaching out to another (anonymous) human being.

Yesterday, Genisa, the person who typed those words commented on the piece I’d submitted to Huffington Post.   Because the Huffington Post limits comments to 250 words, you have to break your comment down into segments and submit each segment, hoping they’ll be published in the order you submitted.  As both Genisa and I found out, this was not what actually occurred.  HuffPo moderates all comments that come in and because of the massive numbers of comments they are (I’m sure) quickly overwhelmed with content they cannot keep up with.  So Part 2 of my 3-part response was never published at all, and part 5 of Genisa’s comment wasn’t either.  It was incredibly frustrating and I felt somewhat horrified when I realized that people were going to read just the last part of a very personal comment and one which made me feel incredibly vulnerable to misinterpretation that I’d written in response to Genisa’s.  About four hours later the first part of my comment was eventually published, which still did little to mitigate my frustration.  (Someone on Facebook suggested those lost comments end up with all those random single socks that somehow never make it into the light of day between the washing machine and dryer.  I kind of love that!)

Genisa wrote in frustration – “I am noticing a pattern here. They are only posting the first and last of cont. posting. I had to post 6 posts to get all of what I wanted to say out. How can anyone understand what I said if all they post is the beginning and end of what I was trying to say? It is leaving out all of the details, the important stuff. This is how it is every day living with Aspergers. I tend to not ever get the whole message people try to tell me, because I am so focused on the details. But when most of it is left out, I just don’t get any of it.”

“This is how it is every day living with Aspergers.”  The analogy being drawn between the frustration of not fully getting everything someone is saying, whole chunks of  what is being said are erased, and trying to make sense of it all anyway, while being expected to respond was so powerful to me.  I thought –  What if it was this way when you tried to express yourself as well?  What if you had a whole idea, something you wanted to relate to another person, but then had to submit it (say it) in short segments, yet it came out scrambled and not in the right order with some of what you wanted to say not coming out at all?  What if this was your constant experience in attempting to communicate with others?  Imagine if every time you had a conversation with someone this was your experience in both receiving information and giving?  Imagine how incredibly frustrating that would be.  Imagine if this happened not once, when you could shrug it off knowing that it was a one time annoyance and while irritating not an ongoing problem, but each and every time you spoke.  Imagine that your experience of communicating was to have people routinely misunderstand you or respond to the last part of what you’d said without hearing or understanding the first part.  Imagine if when people spoke to you, you lost portions of what they were saying.  Imagine what it would be like to ask them to repeat themselves and have them lose their patience with you.  Imagine if you were scolded, ridiculed, called names and punished for not giving an appropriate response.  Just imagine how that would make you feel.

Can you imagine?

For my latest piece in the Huffington Post, click ‘here
 Anyone can contribute!  To be a part of the change, contribute to the Autism Positivity Blog click ‘here

A Letter to You (who wrote – “I Wish I Didn’t Have Aspergers”)

You are beautiful.

It doesn’t matter that we’ve never met.  It doesn’t matter that you do not know who I am.

You are beautiful.

You are beautiful exactly as you are, at this moment, no matter how sad, how angry, how confused or lonely you may feel, you are beautiful.  We live in a world and in a society, which fears that which it does not understand.  The majority of those people are different from you.  That does not make you wrong or bad or any other derogatory word that you may have heard directed at you, it simply makes you different.

You are beautiful.

There are others, others who are similar to you who also inhabit this world.  My daughter, Emma is one of them.  Emma is ten.  Emma does not know what google is or if she does, she cannot communicate that she does.  She, like you, is wired differently.  Emma is autistic.  She has many challenges.  There are things that are much, much harder for her to do, like reading and writing and speaking.  She has lots of sensory issues that cause her tremendous discomfort and even pain, but there are other things that are easy for her.  She is honest and full of love.  She is without guile, she does not bully or condemn, judge or gossip.  She is without inhibitions.  Emma loves music.  I think music speaks to her in a way that conversational language cannot.  When she dances to her favorite songs she becomes an extension to that music.  She incorporates it into her being and it brings her tremendous joy.  She is a free spirit and her beauty emanates from her without censorship.

She, like you, is beautiful.

Find your place in this crazy world.  Speak out and while many may not want to listen or may even try to silence you, do not let them.  Do not remain silent.  Add your voice to the chorus of others who are here with you, who are like you, who also have Aspergers.  Say what you feel.  Say what it is like to be you.  We need your voice, I need your voice.  My daughter cannot tell me these things, so I listen to others who are like her, but who can speak.  Each one of their voices is beautiful.  There are many, many people, like me who want to hear from you, who want to listen.

You are beautiful.

If people say things to you or about you that are cruel and hurtful, do not believe them.  Their words are not a reflection of you, they are a reflection of them.  There are many sad, angry, troubled people in this world who hurt others because of their rage and sadness.  No matter how much they may want you to believe that you had something to do with their unhappiness, you did not.

You are beautiful.

Someone typed into google – “I wish I didn’t have Aspergers.”  From that google search they found the blog Outrunning the Storm, a blog written by a mother of an  Aspergers child.  A number of bloggers got together and reached out to many of us, asking that we each write something, which will be posted on the newly created – AutismPositivity Day Flash Blog.  The above is my contribution.

For my latest piece in the Huffington Post – Running With Mermaids

To read Emma’s profile in The Thinking Person’s Guide to Autism, click ‘here.’