Saying good-bye to blogging

I have not been happy with my blog posts and writing for a while.  I thought it was because I was disconnected with the title of my blog (hence why I’ve switched blogs twice).  But as I have really thought in depth about how to make my blog better in 2013 I’ve realized that isn’t the route I should take.  Instead I should say farewell to blogging.

Why?

My first reason is time.  I have spent the last few months really narrowing down what I spend my time on in order to devote the time I need to my family.  But even as we’re paring down we are extremely busy.  Nate works hard at his job putting in 50+ hours a week.  Plus he is in a Professional MBA Program which of course requires him going to classes and doing gobs of homework.  I’m just about to become busier with my new job as the program director of a great little nonprofit.  Plus my two girls keep me on my toes constantly.  Not to mention managing all of Skylynn’s therapies (which is like a part time job I swear).  On top of all that is maintaining our house, having time to spend together just Nate & I, and doing fun things as a family.  My time is just so maxed out I don’t have time to dedicate to blogging.

My second reason is about my audience.  My blog has grown to be read by those in the autism community; those in the disability community in general; average everyday people; and even legislators; lobbyists; and the like.  With such a diverse crowd reading my blog I have started attempting to write my post to keep EVERYONE happy.  This is just impossible and has led to me writing blog post without any real substance.  But I see no way around this.  I can have one on one conversations about these same topics with all of these different people and disagree respectfully, or we can enlighten each other on our own diverse opinions.  But I can’t do that on a blog.  And I have too much too loose if I irritate the wrong person.  It could affect therapy for my daughter, my ability to help rally a large scale grassroots movement, or even affect funding that the nonprofit I am managing receives.  I take all of these possibilities very seriously.

My third reason is there are LOTS of better autism blogs out there.  In my heyday I think I had an interesting opinion to add to the list of autism blogs.  But I don’t believe I am adding much to the conversation anymore due to how much I censor what I write.

The last reason is I feel it is just generally time for me to move on.  I enjoyed blogging while I was at my peak.  But that time has come and past and it’s time for me to say good-bye to blogging.

So big thank you to all of those who have followed my blog, and given me loads of encouragement.  I love the autism community.  You are like part of my family.  I’m proud to be part of you.  I will leave my blog parked at Autism-Island.com... where it belongs.

Again thank you for reading - and farewell!

What I bought my toddler for Christmas - versus - What she actually wanted

It’s two days after Christmas.  Skylynn (almost 5) has quickly initiated her toys into her acceptable toys and worthy of OCD categories.  She can entertain herself with them for hours.  Then there is my toddler – Felicity (1.5).  She got lots of toys for Christmas but her interest in them last as long as her interest in her old toys.  Thinking about this oddity I realized that what I bought Felicity for Christmas was not what she actually wanted.

What I bought my toddler for Christmas - versus - What she actually wanted

• Colorful keyboard – Unlimited access to your laptop.
• Tent – Unrestricted access to your room and drawers.
• Stuffed animals – A pet with no claws or teeth that I can periodically sit on and strangle.
• Crayons – Your blessing to color on all the walls with my old crayons.
• Play phone– Unconstrained time with your phone.
• Play Doh – Limitless access to the refrigerator and cupboards so I can try to make my own Play Doh.
• Play Tunnel – Unlimited access to you as my jungle gym.
• Play kitchen utensils – Access to all kitchen utensils, knifes, pens, and scissors.
• Candy – Anything and everything you want to eat is mine to eat or play in.
• Puppets – Your constant attention to entertain me.
• Doctor play set – One coupon to never go to the doctor again.
• Board books – Hours and hours and hours of your time reading my old books over and over and over.
• Pacifier – One coupon allowing me to whine as much as I want.
• Blanket – 10 more blankets that look identical to my current blanket, including rips and stains.
• Clothes – Yeah I definitely don’t want to wear clothes ever again.
• Bath toys – One coupon to limitless amounts of water.
• Toddler chair – One big chair I can easily push to anything I want to get to that might be out of reach – especially that stuff you don’t want me to get to.
• Safety gate – Removal of all safety gates, child locks, and other obstacles that hinder my access to anything and everything I want.
• Toy cars – Constant personal chauffeur in the form of you carrying me everywhere I want to go.
• Doll – A sister required to play with me 24/7 and give me every toy I want.
• Lots of love – If you REALLY loved me you’d give me attention 24/7, and let me play with and destroy anything I want.

Please let this week be over fast so I can go back to work!

Oh, and Merry late Christmas and Happy New Year ;-)

Guest Post: 5 famous people with autism in history

The people mentioned in this article are all suspected to have been somewhere on the autism spectrum. This post was written by James Armstrong on Behalf of Autism Care UK.

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The world would be a very different place if it weren’t for Autism. Even though the condition has only recently been recognized  there are many famous people throughout history who are thought to have been on the autism spectrum.

This is an article celebrating some of these people and the contributions they’ve made to our world.

Wolfgang Amadeus Mozart – Composer

Mozart is recognized as one of the most gifted musicians and composers the world has ever seen. His talent was precocious and astonishing; by the age of 5 he was composing pieces and performing for Royalty.

His work is regarded as some of the best classical music ever produced, and many pieces remain popular to this day. His influence on the development of western music is momentous.

Michelangelo – Artist, Architect, Engineer

Considered one of the greatest artists ever to have lived, Michelangelo’s work is some of the most recognisable and well-known of all time.

His genius was recognised during the course of his life and he was commissioned to paint the Sistine Chapel Ceiling by the Pope. The project took Michelangelo 4 years, and the result is one of the most acclaimed works of art on the planet.

But his most famous piece is the statue of David, which is the epitome of Renaissance sculpture.

Sir Isaac Newton – Physicist

Credited with the “discovery of gravity” and considered by many to be the most influential scientist who ever lived, Newton’s work on universal gravitation and the laws of motion dominated scientific thinking for the next 300 years.

His other notable achievements include the invention of the reflecting telescope and his work on the visible spectrum of colours after observing the effect of a prism splitting beams of light into rainbows. But for the majority of people, Newton is most famous for having an apple fall on his head.

Lewis Carroll – Author

Carroll is the acclaimed 20^th Century writer behind Alice’s Adventures in Wonderland; one of the most enduringly popular pieces of literature ever produced.

He was also a noted poet; his nonsense poem Jabberwocky is thought to be one of the greatest ever written.

'Twas brillig, and the slithy toves
Did gyre and gimble in the wabe;
All mimsy were the borogoves,
And the mome raths outgrabe.

"Beware the Jabberwock, my son!
The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
The frumious Bandersnatch!"

He took his vorpal sword in hand:
Long time the manxome foe he sought—
So rested he by the Tumtum tree,
And stood awhile in thought.

And as in uffish thought he stood,
The Jabberwock, with eyes of flame,
Came whiffling through the tulgey wood,
And burbled as it came!

One, two! One, two! and through and through
The vorpal blade went snicker-snack!
He left it dead, and with its head
He went galumphing back.

"And hast thou slain the Jabberwock?
Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!"
He chortled in his joy.

'Twas brillig, and the slithy toves
Did gyre and gimble in the wabe;
All mimsy were the borogoves,
And the mome raths outgrabe.

Pablo Picasso – Artist

A 20^th Century artist who’s credited with leading and inspiring the cubist movement of artists, Picasso was a remarkable man. He lived through two world wars but never fought, spending the second in Nazi occupied France where he continued to paint and sculpt throughout the conflict.

Picasso is still revered as one of the most revolutionary and accomplished artists ever known.

Autism hearing: Matheson was there - where was Chaffetz?

Last Thursday, November 29th, at 2pm ET and 12pm MT there was a Congressional Hearing in the House Committee on Oversight and Government Reform.  I was, as many autism advocates were, glued to my computer watching.  It was almost 4 hours long and incredibly interesting.  I will be writing more about it as I re-watch it.

Representative Jim Matheson is not on the House Committee on Oversight and Government Reform but he cleared his busy schedule for this important hearing. He asked about why our rates are so high and what new therapies are emerging to treat autism.  A clip of his questions/comments at the hearing is below.



I want to publicly thank Representative Matheson for being at this hearing.  Thank you for making time to go and visit a committee you aren't even part of, to represent those affected by autism in Utah.  Thank you for asking hard questions and being present to learn more about rising autism rates.  Thank you for understanding that this issue is of great importance to your constituents.  Please continue working hard for the many, many, many, individuals and families in Utah affected by autism.

Now I want to mention that Representative Jason Chaffetz was not at this hearing.  He actually sits on the House Committee on Oversight and Government Reform - but did not attend this hearing.  You actually see his name plate and his empty committee seat multiple times during the hearing.  Why would he miss such an important hearing when Utah has the highest autism rates in the country?  He is the only member on this committee from Utah.  If Rep. Matheson hadn't made time to come to this hearing we would not have been represented at all.

I called Rep. Chaffetz's office to find out why he wasn't at this hearing.  The person I talked to said "maybe he didn't know about it?"  I highly doubt that was the case when Rep. Matheson knew about it and he's not even on the committee.  Because Rep. Chaffetz works for us - the people of Utah - I asked his staffer to pass on my concern that he wasn't there.  I also asked that someone get back to me about what was more pressing for Rep. Chaffetz than this hearing.  I left my information and was told my concern would be passed on - I have not heard back.

Now I want to make sure everyone knows I am not highlighting this as a partisan issue.  As Representative Issa so eloquently said at the beginning of this hear - autism is beyond party.  I am bringing this issue up to thank Rep. Matheson and to bring some accountability to the fact Rep. Chaffetz wasn't there.  I imagine neither Rep. Matheson, or Rep. Chaffetz thought we'd notice their appearance or absence at this hearing.  But we did.

The issues surrounding autism are of GREAT importance to Utah due to our incredibly high autism rates.  We need to make sure our elected officials are giving it the attention it deserves.

If you'd like to thank Rep. Matheson for attending the hearing you can do that here.

If you'd like to ask Rep. Chaffetz why he missed the hearing you can do that here.

Autism Astronauts

Dear Joe – guy on the spectrum,

Thank you for your comment today.  I loved it, and it was very thought provoking.  So much so I want to share it with all my readers.

On my meme  “Arguing with an autism mom about autism, is like arguing with an astronaut about what it’s like to walk on the moon” (seen below); Joe commented “Dear blogger, Arguing with an autism mom about autism is like arguing with an *** astronaut's mom*** what it feels like to walk on the moon. Sincerely, a guy on the spectrum.”

And in so many ways he is so right.  I don’t know what it FEELS like to have autism.  I don’t know how frustrating and, in its ways, wonderful autism can be.  I don’t know why Skylynn acts the way she does and the many things that are so interesting and complicated in her world and life.  I have not walked on the “autism moon” as both Joe and Skylynn have. 

Autism Spinning

Something that drives us autism parents CRAZY is when parents of nuerotypical children say "oh yeah my child does that."  It drives us so nuts that is was worthy of my post 50 things you should not say to autism parents.

One of the things I hear that a lot about is Skylynn's spinning.  People will ask what things signaled to us that she had autism and one of them was her incessant spinning.  To that people always say "yeah, my kid spins too."  But what they don't understand is autism spinning is spinning at an ENTIRELY different level than just fun kid spinning.

What makes the spinning so different is that for kids with autism, and other sensory processing disorders, spinning is a tool - it's a way to get additional sensory input.  For many kids, like Skylynn, additional sensory input is needed just to feel ok.  We bought Skylynn a spinning chair from Ikea that has hugely reduced how often she has major meltdowns.

Well this morning, as we were eating breakfast, Skylynn started spinning - and spinning - and spinning - and spinning.  See last night she didn't take her insomnia medication so she was up for 4 hours in the middle of the night.  So then she felt funny this morning.  So since she felt off apparently she needed additional sensory input - to the tune of 10+ minutes of spinning.  After she'd been spinning for somewhere around 10 minutes, and I had tried to stop her twice to get her to eat her breakfast, I decided to video tape it.

So this is what autism spinning looks like, except add 10 minutes to it.  See - its different!




Felicity is crying in the background because Nate is putting clothes on her.  If you watch until the end you can hear Skylynn talk a bit.  :)

Modern Dancing

So I have fallen off the planet - again.  I guess being busy does that to you right?  I have so many awesome things to tell you about the progress Skylynn is making.  But I've realized there are some things I just can not share well in words or pictures.  A video would be the best way to do it justice.  And what I found is in almost every video I want to share we say "Lexi's" real name - Skylynn.  So I've been going back and forth and talking to some friends about it and I've decided to revert back to using my girls real names.  "Lexi" = Skylynn and "Zoe" = Felicity.  I take many safety precations and in truth I don't think using a psuedonym or not makes much of a difference in this world of information.

But now to the fun.  Here is a really fun video of Skylynn breaking out her modern dance moves.  I wish I had caught the 2 minutes before.  I was honestly impressed.  I mean I'm her mom so of course I am.  But as far as I know Skylynn hasn't really seen much modern dance.  So this was just all in her head.  It's fun to watch.



Excited to catch you all up in the next bit.  :)

Christine

Learning to wear clothes at home

As is the case for so many kids with autism, Skylynn loves being naked. Now by naked I mean she is just wearing a diaper. We are lucky that she is wiling to wear clothes out in public (whew) but the minute we get home all clothes are off. This is obviously starting to become a problem. Little girls can't just run around naked indefinitely. I already think she is growing up so fast and it seems like before I know it she will be hitting puberty. So we've decided to try to get Skylynn to wear clothes at home.

We are starting small. I found "boy short" underwear, camisoles, and tank tops at Walmart and bought a ton of them. At first Skylynn was not interested in wearing them. Then magically I called them "undies" and she was all in. So now we attempt to wear "undies" every day while at home. I always praise her up one side and down the other for being such a big girl and wearing "undies".

The one snag we came up to was the fact that the minute the undies were even slightly dirty Skylynn took them off. So we resorted to buying a TON of camisoles and tank tops so she can change them a few times a day.

All in all I'm very proud of Skylynn for taking this small step into staying dressed all day. Slowly but surely she is constantly impressing me at the progress she is making. Next is potty training *groan*!