Autism Island

Saying good-bye to blogging

2013-01-02T13:48:00.001-07:00

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

2012-12-27T16:54:00.000-07:00

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

2012-12-10T22:13:00.002-07:00

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.

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?

2012-12-04T21:07:00.001-07:00

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

2012-12-04T13:40:00.001-07:00

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.

But in thinking of this meme and autism I think I am still an astronaut. I am not the astronaut walking on the moon. Once again that is Joe, Skylynn, and so many others. Instead I would argue that I am the astronaut in the space shuttle, watching the astronaut who is walking on the moon. I’m so close, just feet away from the moon. But for whatever reason I must stay inside the shuttle and watch the person I love and cherish walk, jump, spin, and float, on a moon I will never personally set foot on.

Sitting in this space shuttle is maddening and wonderful. It is maddening to watch the person I love so much, and have sacrificed so much for, walk in a place I cannot go. It is so hard to see them fall in a crevasse or get stuck behind a mountain. It is so hard to feel so helpless when I care so deeply for them. And in a selfish way I want to be with them - I want to experience it with them. I want to be a bigger part of their life than this space shuttle allows me.

But as I mentioned being in the space shuttle is also wonderful. Not everyone gets the privilege of being here. Not everyone, in fact very few people, get to know the astronaut that is walking on the moon as I know them. Most people never get to know my astronaut or the “autism moon” in such an intimate way. I know how elated I am every time I watch my astronaut make a huge exciting leap in the air – their floating – their enjoying life – and I love watching it. I know how hard my astronaut has worked to make every leap and bound they make. Oh it’s so exciting – I’m so proud.

Now back to reality and to Joe. Once again thank you for your comment. I try very hard to keep a perspective that is respectful to those with autism. My daughter is one of you. You understand her in a way I never will. I never want to alienate a community my daughter is part of. I know sometimes it is hard for autism parents and people with autism to understand each other. I am sure there are so many ways I could be a better parent to Skylynn in ways that deal, and don’t deal, with autism. I only hope both Skylynn and those with autism give me a chance to show I mean the best and I want the world for all of you.

My understanding of autism may be limited to the nuerotypical world. But I know my understanding is much much deeper than those who have not lived with and loved with a person on the spectrum. Through the good days and the bad, I’m proud to be a part of the autism community.

Autism Spinning

2012-12-02T22:37:00.000-07:00

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

2012-11-30T17:18:00.001-07:00

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

2012-11-13T09:13:00.001-07:00

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*!

Go Vote!

2012-11-06T08:53:00.002-07:00

I woke up this morning with the words "I'm proud to be an American..." singing in my head. I'm proud to have the opportunity to vote for candidates I personally know and support. I use to be so jaded towards local politics. Then I got involved. Now I'm proud to be a part of them. Make sure you vote today. I know the power to decide the future of our neighborhoods, cities, counties, states, and country, is still firmly held in the hands of the people.

Autism & 2nd Impressions - Yes to a cat :)

2012-11-03T10:25:00.000-06:00

Some of you might remember my post about a month ago titled "Autism and first impressions - no to a cat." Basically I wanted to get our family (and specifically Skylynn) a cat. I had found a really interesting research study showing that kids with autism who get a new fury friend around the age of 5 show improvements socially. So I took Skylynn and Felicity to the local shelter to pick out a cat. Well Skylynn was SUPER excited but the first cat she sat next to scratched her. After that she wanted NOTHING to do with any of the cats. I thought that might be the end of the cat search for us.

Well I was given a bunch of great advice after posting the "no to a cat" post. Including one comment from Terrie Ann that suggested I watch youtube cat videos with Skylynn. So that's what we did. We watched youtube videos. We played around as cats (Skylynn didn't really get it but Felicity loved it), and we talked about cats. Skylynn started getting excited about cats again.

So I started on the cat search again. Most of the time I went alone because it was easier. I went to 4 different places and checked out all their cats to no avail. I wanted a REALLY gregarious cat. One that would follow you around begging for attention if you walked away. The cat had to be super chill and not get mad if I pulled on it's tail. It also couldn't flinch around loud noises. It had to let me pick it up a bit rough and not care. Plus be fun and frisky, but never bite or scratch. High hopes for a cat right? You can see why the search took me to so many different shelters.

Then I found her - Luna. She is PERFECT! She is everything I wanted in a cat. Chill, silly, gregarious, attention loving, great with kids, etc etc etc. She falls asleep in our arms laying like a baby (picture above). My girls reaction to her has been fun. Skylynn treats her like Felicity. She likes her sometimes, she is annoyed by her sometimes, and she just plain ignores her sometimes. But she lets Luna get in her space in ways she won't let Felicity and is ok with it. So I think that's great. Felicity is OBSESSED with Luna. She follows her everywhere and is learning how to be softer so Luna doesn't run away (weird that Luna doesn't like it when a 15 month old hits her).

I'm so happy to have our family pet. Somehow it feels like our new home is complete with our own little animal with her silly personality walking around in it. So happy we tried again to get a cat and thank all of you for the great advice!

Guest Post: Tips for traveling with a child with autism

2012-11-01T11:32:00.000-06:00

David Hermes Stanley is a freelance writer currently writing articles and reviews for toddler car seats. He has written reviews for some of the most popular models on the market, like the latest Graco infant car seat model.

Some families who have children with autism give up taking holidays or even traveling altogether, because they worry about making their child feel uncomfortable for the duration of the journey, or that he or she might not have fun in the place where the family will be vacationing in. Now, granted, traveling with a child with autism or a child with any disability for that matter, is not always easy, but it's also not impossible. All it takes is some research and planning and everyone in your family will have a great time.

First of all, before you start making your plans, you need to take into consideration your child's needs and sensitivities. Some children for example don't like traveling by plane, in which case you should plan for a long road trip with some diversions and stops along the way, or you should choose a holiday destination that can be easily and quickly reached by car. It's also a good idea to introduce your kid to new places and the idea of exploring them, to see how he or she feels about it. Try walking around parts of your neighborhood you haven't visited yet, or visit your local parks and playgrounds.

Here are some valuable tips that you should keep in mind when planning your vacation or trip:

1. Many popular destinations, like Disney World and SeaWorld, have special programs and protocols in place for children with autism as well as for children with other disabilities. For example, they will make sure that they don't wait in line or they will give them front row seats to the events and spectacles. Look online for destinations with similar programs and services.

2. When thinking of holiday destinations, pick one that you that your child can be comfortable in.

3. If you intend to travel by airplane, contact the airline and inform them about your child's situation, this way the staff will know in advance about your child and they will make his or her trip and experience as pleasant and comfortable as possible. Some airlines will even provide you with instructions and tips to help you prepare your kid for the trip.

4. If you are going on a cruise or even when booking a hotel room, make sure to inform them about your child's needs and ask if they can arrange special accommodations for your family.

5. As I said above, if you think that your child can't handle air travel, then travel by car or pick a destination that is not very far from your home.

6. The Autism Society of America has some neat wallet size cards that explain autism in a nutshell, before you leave for your trip, print a couple of those and keep them in your wallet. They will come in very handy in case you have to talk to someone, like airport security for example, about your child's condition.

7. Try to prepare and make your child feel excited about the trip by talking to him or her about the places you'll visit, telling stories about some of the sights and activities and even showing some nice photos.

8. Don't forget to pack some toys and puzzles or even music and audio books to keep your kid entertained throughout the trip.

These simple tips should help you and everyone in your family have the best time possible in your vacation and trip!

Guest Post: Paralympic Gold Medallist Applegate Can Be Inspiration To Others With Autism Spectrum Disorders

2012-10-19T09:20:00.003-06:00

This guest post written by David Smith, a passionate blogger and autism advocate. He works on behalf of numerous charities and authorities, such as the Hesley Group in the UK.

As inspirations go, the London 2012 Olympics and Paralympics have given us many amazing events and performances to remember. One of which was Jessica Jane Applegate’s stunning gold medal win in the 200 metres freestyle S14 swimming. Jessica, who has Aspergers Syndrome, has become the first British teammate to win gold at the Paralympics as an intellectually disabled athlete. The 2012 Games mark the first year in which athletes with an intellectual disability have been included since 2000, and the performances from our Paralympic team have become an inspiration for both children and adults with autism.

Jessica Jane Applegate

Applegate began swimming at an early age and was soon setting records for her region. Despite recently undergoing surgery on her toe, Jessica was focused on attending the Games and continued her training on dry land during her foot surgery and was back in the water just two weeks after. Swimming has always given her a focus and her amazing win shows that her dedication has been worth it.

Benefits of Sport

Autism specialists and those working as autism support are the first to see the benefits of using sport as part of dedicated autism care. Sports are great for people of all ages and abilities, thanks to the obvious health benefits to both body and mind, increasing fitness levels and stimulating the brain with new skills. And for those living with autism, sport can also lead to improvements in behaviour, reducing negative behaviours such as body rocking and head nodding.

How sport can help

Autism specialists are quick to point out, however, that not all sports are beneficial. Autism affects social and communication skills and in some cases may impair motor co-ordination, which can make some team sports, in particular, rather hard to grasp. However, disciplines such as swimming or athletics can be a successful choice for both children and adults with autism as the athlete is working alone, with simple, repetitive skills to master. Inclusion is these types of sports can improve self-esteem and boost levels of happiness.

As Jessica experienced, sports can give those needing autism care a positive focus and with the right teacher or coach who understands the learning process of kids or adults with autism, skills can be nurtured and developed successfully up to Olympic levels. Sport lets us focus not on what we can’t do but on what we can.

Time to make some noise Autism Community!!!

2012-10-14T23:08:00.001-06:00

Alright autism community… it is time to get political and show how strong we are! The next Presidential Debate is this coming Tuesday. It is time for our candidates to address the ever increasing autism rates and the needs of the autism community. So help make this happen!!!

1st… go to Facebook and like the page: 1 in 88 can’t wait, get autism in the debate!

2^nd… get a picture of your family, child, you, etc and make the message heard. Write it on poster board and take a picture. Put the words on a picture you have.

3^rd… Put your picture on the Facebook page, tag President Obama and Mitt Romney on Facebook.

4^th… Get it out on twitter and use hashtags like: #1in88cantwait, #autism, #debates, #AutismVotes2012, and tag @MittRomney, @BarackObama, @GMA (Good Morning America), @cbsthismorning.

5^th… Be creative and do whatever else you think of to make some noise, get this message out to our community, and let’s get autism in the debates!

Let’s make some noise community! This is something we KNOW how to do REALLY REALLY REALLY well! Let’s make this louder than 50 Cent.

Autism Community… Let’s make some noise!!!

My 1 in 88 can’t wait!

Put autism in the debate!

Not thrilled about going to a government program for help

2012-10-03T08:21:00.002-06:00

State To Enroll Families In Autism Medicaid Pilot Program | KUTV.com

On Monday I was interviewed by Channel 2 News in Utah about a new Medicaid waiver program. This program is part of the pilot program that passed through the Utah State Legislature in replace of an autism insurance mandate. Skylynn is lucky enough to fall in the small age range that this program is going to help but she might not get in because the program can only help 200 kids, and it will be based on a lottery. The whole thing is frustrating.

But really I am a bit bitter that Utah’s conservative legislature thinks expanding government by creating a government program to help a small number of kids with autism is better than letting Utah families take care of themselves through their insurance plans. Nate has a good job, I have a good job, we have insurance, why should we have to turn to the government for help? Isn't that against conservative values?

Now I think a Medicaid waiver is important. I also believe very STRONGLY in social programs (I am a social worker and all) but forcing autism families onto social programs because there are no other options just seems so wrong.

We are fortunate to be able to pay for some therapy for Skylynn for a very short period of time. But once that time is up so is her therapy unless she gets in this program, or the state legislature actually requires insurance companies to pay for autism therapies. With the cost of an autism insurance mandate somewhere around $0.31 per member per month, why in the world hasn't this legislation passed already? Honestly I blame insurance lobbyist.

It’s time for Utah’s legislature to stop listening to insurance lobbyist and their unfounded scare tactics and to actually take care of children with autism, and their families, all across Utah.

Robbed of a carefree childhood

2012-10-02T22:05:00.001-06:00

This is a picture of Skylynn the month she started
early intervention. One of the rare photos
we have of her at that age with her looking
at the camera.

There are so many things the disabling part of autism robs from our children. I say the disabling part because not everything about autism is bad. There are many unique and great things that come along with autism that I never want to dismiss or overlook. But strictly speaking of the negative parts of autism it is so frustrating to know the things it takes away from my child’s life. Specifically I know autism has robbed Skylynn of a carefree childhood – and it makes me sad.

Skylynn started receiving therapy when she was about 20 months old – she wasn’t even 2. Oh I dreaded the days our first therapist came over. She would force Skylynn to do age appropriate things by basically sitting on her and moving her hands. Skylynn just screamed and screamed and screamed. I just wanted the best for my child and thought this therapist knew what she was doing – she was from the state early intervention program so she must know what she is doing right? Luckily or unluckily we had many issues with this particular therapist. So after quite a fight with early intervention a new therapist started seeing Skylynn. This began the stream of therapist in and out of Skylynn’s life.

Just for fun I decided to count up the number of therapist Skylynn has had in each category over her short 4 ½ year lifetime. I find the results a bit staggering. Skylynn has had: 2 Development Specialist, 2 Speech Therapists, 1 Occupational Therapist, 2 Special Ed Teachers, 6 Special Ed Aids, 1 School Based ABA Teacher, 7 School Based ABA Aids, 1 BCBA, and 3 Home Based ABA Aids. This is a total of 30 Therapists, Teachers, Aids, etc that Skylynn has worked with in the last 3 years.

Can you imagine what that must be like for a little kid? I absolutely cannot. But as parents what choice do we have? I feel caught in this awful balance of letting Skylynn have a childhood and making sure she receives as intense of therapy as we can possible manage. It’s a brutal give and take.

And why must we sacrifice our children’s childhood for therapy? Because we want our kids to be the best they can be – whatever that is. I think one of the hardest things about autism is that no one knows what is so different between the kids that respond amazingly to therapy and the kids that don’t. We are stuck every night thinking: maybe I should try a different therapy? maybe a different intensity? maybe on a horse? petting a dog? what about vitamins – will they help? It’s brutal. All we want is what is best for our kids. And there are so many different options with varying levels of actual science backing them up, and varying degrees of anecdotal evidence, and varying cost. It’s all pretty maddening. And stuck in the middle of all of this are our children and their childhoods.

I forgot that recently. Skylynn was going to an ABA style school from 8-3, then coming home and having 2 hours of intense ABA therapy, then going right to bed, and doing it again Mon-Thur. Then Friday she had an hour of Speech and 4 more hours of home based intense ABA. And surprise surprise she was a MESS. She was having gigantic meltdowns every night, having trouble at school, and generally being really difficult. I didn’t understand what was going on until I took a step back. In so many ways I’m still mad at myself. Of course Skylynn needs time to be a kid. What kind of a mom am I that I forgot that? Once she didn’t have therapy at night she turned into a different kid – a happy kid.

This journey called autism is so difficult sometimes – a lot of the time. I love my daughter more than anything in this world, no matter where on the spectrum she is today or tomorrow or 40 years from now. And because I love her so much I also want to give her the chance to accomplish anything and everything she could ever dream up. I want her to live her life just as she wants to, without the negative parts of autism getting in her way. Balancing her need for a childhood now and her eventual desire for more independence and other goals later is extremely difficult. For now I’d like the think we have struck a good balance because she seems generally content and happy with her life.

When I think back on the carefree childhood autism has robbed from Skylynn I feel a bit sad. I don’t think I will ever forgive autism for this.

Hope to see you on Thursday – The Autie Project Premiere

2012-10-01T12:51:00.001-06:00

I feel lucky to be part of a great documentary called The Autie Project. The producer Derrick, and his lovely wife Amanda, have done a great job talking about autism in general and highlighting some of what happened during last year’s legislative session in Utah. I’m excited to be part of the panel discussion on Thursday. I hope to see all of you there. RSVP to the event at the Facebook page found here.

Autism and first impressions – no to a cat

2012-10-01T10:13:00.000-06:00

I cannot emphasis the importance of first impressions with Skylynn enough. If I want to try something new I go to extra extra lengths to make sure the first time Skylynn sees it, tastes it, meets them, goes well. Because I know that if I don’t, and Skylynn doesn’t like it, that could be it. Skylynn doesn’t really give things a second chance. Maybe if I wait long enough (months) I can reintroduce something and she might try it again. That is a very tentative might.

So with all of this in mind I took Skylynn to the animal shelter yesterday to pick out a cat. Now that we are settled into our own home, with room for everyone to play, I thought the addition of little fury friend would be a great idea. Plus I found a really interesting research study showing that kids with autism who get a new fury friend around the age of 5 show improvements socially. We are still really busy so I thought a cat would be less work then a dog, plus I’ve always thought of myself as a cat person.

Skylynn was so excited. I’ve been talking to her about getting a cat this week. I wasn’t sure if she understood or not but I thought I would try to get her excited. As we drove to the shelter I asked her if she wanted a cat and she said “cat, please.” I was really excited.

So we go in and start looking at cats. Skylynn is so excited. I have to explain that this shelter has a great area called “Kitty City” where the cats are in little rooms instead of cages. So you get to go into the room and interact with them. The first room has this pretty grey cat that Skylynn is immediately interested in. Unfortunately, this grey cat was a bit skittish. At the point the grey cat started hissing at another cat I started ushering my girls out of the room. I moved Skylynn away from the grey cat and turned to get Felicity. Well in that second Skylynn went back to the grey cat and sat down next to it again.

Next thing I know I hear hissing and I see the grey cat swipe at Skylynn’s face. I hurry over, grab the grey cat’s paw so it can’t do anything else and move Skylynn. She is in pure shock. She looks on the verge of tears and just utterly shocked. I hug her, get us out of that room, and move into the next one. We go in the next room and I start playing with the cats in there. Well Skylynn is now preoccupied with the little cut on her face. She is picking and picking and picking at it making it bleed like crazy. I’m hoping to distract her so we don’t ruin the excitement of getting a cat. So I hold up a sweet, docile, little kitten to her. She wants NOTHING to do with it. She doesn’t want to sit by it, see it, or feel it. In fact the more we are there the more she wants away from anything that has anything to do with a cat.

The whole thing was just so sad. She is now terrified of cats and wants nothing to do with them. So for that ends our cat search – maybe forever. We might try again in a few months, or maybe come next summer when we have more time we’ll look into a dog.

I can’t overstate the importance of first impressions with autism. With Skylynn the first impression is the deciding factor, and for now, she is sure cats are mean creatures who scratch.

Guest Post: Autism Island

2012-09-28T10:36:00.001-06:00

I have to say I am THRILLED to share this guest post with you. Larry wrote this on his blog "Textuality" on March 29th, 2012 reflecting on his own experiences parenting a child with autism, without having any knowledge of me or my blog Autism Island. He found himself feeling like he was on another island apart from everyone called Autism Island. I LOVE LOVE LOVE this guest post!

Larry is a married father of three living near Boston, MA. His four-year-old son has high-functioning autism. He blogs at his blog Textuality. His original post can be found here.

My wife and I recently attended the first meeting of an autism support group sponsored by our local pediatrics practice. I'm glad such a group has finally been established because, frankly, parenting an autistic child is difficult. I once summarized the challenge: "my wife and I are on a bit of an island with our son. The nuances and pressures of our daily lives are largely invisible to outsiders, even to our families."

Over the course of the two-hour meeting, parents vented the anxieties of living on Autism Island. These mothers and fathers obviously craved the chance to reach out to others who understood. My wife and I did understand. We recognized the experiences and frustrations people shared, from finding food our kids liked, to dealing with scratchy clothes, to working with teachers and school administrators, to unclear pictures of future adolescence and adulthood. Our common agitation was often not the autism or the autistic child but the outside world--family, friends, teachers, doctors, the system.

But the agitation makes sense. When our son (now four years old) has a tantrum, throws things, and talks disrespectfully, we know his mind and body are just trying to work out an overwhelming emotion. These events often occur at home. To the outside world, he's often a sweet and quirky boy, so they wonder if he's not really autistic, just behind. Sometimes he will act up in public, in which case others see him as undisciplined, unrestrained, and worst of all, unparented.

The hard lessons of parenting a child on the autism spectrum only emerge in the everyday, and the all the time. We have learned through painful trial and error that time-outs and stern lectures don't work for our autistic child. Other parents have not learned this. They don’t know, and it doesn’t make sense to them. Even our families have not quite learned it. Our relationships with people outside of the nuclear family often involve trying to explain what it's like to raise our son and why we make some of the decisions we do--decisions that we would not make, or would not need even to think about, with our older daughters. In general, we have to be more holistic and strategic with our son than we do with our daughters. When we interact with him, we are always to some extent executing a strategy.

Fortunately, parenting an autistic child also brings truckloads of joy. My wife and I can point to many bright spots and smooth patches. Bright spots include the great help our son receives from his teachers and therapists. Our town happens to have a terrific special education program, so we benefit from excellent resources locally. Another bright spot is our families, who are so helpful and supportive. Yes, occasionally we sense someone's not completely on board with what autism means and how we deal with our son, but most everyone is great. A third bright spot is our neighborhood. Having nice neighbors who themselves have nice kids does a lot for our family. We feel as though others know our son and are looking out for him.

The smooth patches seem to be more frequent lately, and they seem to be longer. Last summer and into the fall, our son seemed to act up a lot. This year, he's been good consistently. Yet, "good" means good for him. He's always a bit inflexible and prone to moderate outbursts. Our household has responded by becoming much stricter about providing positive regard and reinforcing good behavior. My wife and I have worked on projecting positivity to all the kids and to each other. Positivity is not mindless cheer; rather, it means giving attention and praise to the behavior we want. We recognize the good and try not to validate the bad.

In short, our son's autism has pushed us to be happier, better, and more conscientious people than we were before. And it is turning our household into a more engaged and affectionate environment. Over time, more outsiders are becoming insiders. Our families and friends are learning along with us, and we are learning to relate to the world a little differently than we ever would have imagined before our son came into the world.

This of course is all very good. In fact, it's profoundly good. It's also hard, however, because we fail a lot--a lot--and the stresses are always there for us, for our son, and for his siblings. Sometimes, we want to leave Autism Island temporarily, like Robert Frost wanted to leave earth by climbing a birch tree:

I'd like to get away from earth awhile
And then come back to it and begin over.
May no fate willfully misunderstand me
And half grant what I wish and snatch me away
Not to return. Earth's the right place for love:
I don't know where it's likely to go better.
I'd like to go by climbing a birch tree,
And climb black branches up a snow-white trunk
Toward heaven, till the tree could bear no more,
But dipped its top and set me down again.
That would be good both going and coming back.
One could do worse than be a swinger of birches. ("Birches")

We would always come back, but we are not free to leave. There are no birches on Autism Island. Maybe there will be, someday.

My son may remain on Autism Island his whole life, but maybe not. Evidently, the Island can grow: it can become larger, more expansive, and more easily connected to other masses--that is, other people--out there in the seas of the world. With help, my son can build bridges and connections that will allow him to travel far beyond Autism Island.

For now, he seems happy and aware that he is loved. I don't know if he realizes he is autistic or if he senses being different from others. I am very curious about how he will come to understand his own experience as an autistic person. As he grows and learns, my wife and I plan to be with him as much as he wants. We plan to explore Autism Island with him.

My son, my wife, our daughters, and me--none of us chose to be here on Autism Island. But it is our home and we love it. We can live happily here, and we will.

Dear Stress

2012-09-25T13:17:00.001-06:00

Dear Stress,

Hello my best friend-emy. My constant companion for longer than I want to admit. We've gotten to know each other far too well lately. I've called your influence in my life many names, such as: over extended, red lining, maxed out, stupidly busy, etc. But no matter what I call you - you are you - Stress.

Well, my dear Stress, I'm writing you this letter to tell you we can't go on like this. I can't have you around all the time. You aren't good for me so I have to move on.

I know you don't understand how I can turn on you like this. You're the one who's held my hand through: legislation, my job crisis, juggling Skylynn's therapies, incredibly difficult family drama, toxic personalities, buying a house, moving, deadlines, broken friendships, and more. You held my hand and told me I needed you to get through. Stress, you told me that without you I wouldn't get things done; I wouldn't have enough time; I would let everyone, and myself down. Yes, dear Stress, you told me all of this - and I believed you.

But I left you for a week - I went away on vacation. Wow, until I went far away from you I didn't realize what a hold you had on me. How you've run my life and negatively effected me and my family in so many ways. It wasn't until I was completely free of you for a week that I could see clearly your effects on my life.

Wow have you effected me Stress. All the things you told me you'd help me with. Well, you actually made all of them so much harder. You are the extreme anxiety I feel over big and small things. Did you know this anxiety was often crippling so I couldn't get anything done? Stress, you let me neglect the most important people in my life: my children and husband. I can't believe I let you influence me like that. Even when I was with my family you were right there with us sabotaging our time. You sabotaged other relationships with close friends and family members too. Thank goodness most of them are repairable, but unfortunately some of them are not. You're the reason I've been eating so unhealthy and getting so little sleep. I could go on and on. But for my own sake I will stop now. Suffice to say you have negatively impacted almost every aspect of my life for far too long.

I know you think I still need you to get through. I still have a husband, two kids (one with autism), a job, friends, family, drama, deadlines, and unexpected circumstances to wade through. And although I know you will creep back into my life from time to time - I know I don't need you.

In fact I've already replaced you, Stress. I've replaced you with Reason, Confidence, and Perspective. Reason is here to help me figure out what is reasonable for me to ask of myself. You always show up when I take on more than I should. Confidence is here to remind me that I can and have accomplished great things - and I will continue to accomplish great things - without you by my side. Lastly, Perspective is here to help me remember why this crazy thing called Life is all worth it. Life isn't worth it when I run around stressed out everyday missing the good stuff. It's worth it when I focus on the people I care about and making myself a better person. I know that Reason, Confidence, and Perspective will take care of me. So don't worry about me as you leave.

As I bid you farewell I ask that you visit me as little as possible. I know I will see you again, but I hope I can send you away quickly with the help of Reason, Confidence, and Perspective. I wish I could say "we've had good times" but I think instead I can say "sometimes I had good times in spite of you." So please, leave now and don't look back. I will not miss you or your influence on my life.

Sincerely,
Busy Mom on Autism Island - Christine

Everyone needs a chance to reset

2012-09-25T12:54:00.001-06:00

I got home from the trip of a lifetime about two weeks ago. I went to Washington DC for the Autism Law Summit (more later) and then had the opportunity of staying with my sister and her brand new baby girl for a few days.

Washington DC is an amazing city. The Autism Law Summit was full of great information and some of the greatest people I know. And staying with my sister was so much fun. But none of those are why this trip was a life changing trip for me. The reason this trip was such a big deal for me was because it gave me a chance to hit reset.

See I’ve been running at red line for months and months and months, maybe years. I always joke that I don’t have time to put out fires; I just maintain them so they don’t burn me down. Over the last few months and years my family’s life has been so chaotic and complicated. To give you one example, in the last 3 years my family has moved 5 times. That alone is intense but add onto that all the other crazy things going on (the list is too long – I don’t want to bore you) and its just insanity. So with all of that I’ve been running around in constant *seriously stressed out* mode – even when I probably didn’t need to be.

Getting away from the day to day monotony, the constant stress, the long to do lists, and even my wonderful kids and husband, gave me a chance to do some serious reflecting on my life and my priorities. Wow I had them all messed up. I came to some mind blowing epiphany and really thought through all the changes that needed to be made when I got home.

It’s been two weeks and it is insane how completely different my families lives are now compared to before I left. We’ve changed schedules, and therapy, and priorities, and so much more.

I guess my conclusion is everyone needs this. I never really saw the value of vacations before. I thought they were a nice luxury and I really wanted to go on one, but it wasn’t important. Boy was I wrong! With how difficult life can be and how easy it can be to become distracted with a million things to do – all of them good. We have to have the chance to really step away from our lives and evaluate if we are doing it the way we want to. I’m so glad I had that chance.

I hope everyone reading this blog can figure out a way to hit reset in the near future.

Time to stop sacrificing one for the other

2012-09-08T13:03:00.001-06:00

I was so ready for a break from Skylynn at the point I left Utah to head to Washington DC for the Autism Law Summit. She has been being really difficult lately probably due to us moving, her starting school again, and the fact that she has somewhere around 10 hours of school and therapy Mon-Thur and 5-6 hours on Friday. Pretty intense!

This break from Skylynn has given me a chance to really reflect on how far she has come, who she is, how autism affects her, how difficult all of this is on her, and how I can be a better mom to her - and its wonderful.

My sweet Skylynn has come so far. As so many autism parents of younger children, I'm always worried that I'm going to miss this important window of time while she is younger. I worry that if I don't cram every evidence based therapy in right now - as intense as possible - than Skylynn's future will forever be devastated. And although it is so important for me to think about her future and work my ass off to give her the intense therapy that will change her life. It is so one sided to just think about her future. What about her present?

What am I doing now to make her life enjoyable? What am I doing right now to continually build our relationship? What am I doing that helps us grow together and continually remember that more than the fact that we are mother and daughter and we love each other, we also really like each other and enjoy each others company?

Well I can tell you the answer to that. Not enough. When was the last time I played with play dough with her? Too long ago. When was the last time I lined up colored balls, or played with "sticks", with her? Too long ago. It's like I felt that because we are working so hard to have therapist do these things with her therapeutically, I don't need to. But thats so not true.

Maybe some of the reason I am having such a hard time with Skylynn right now is because I am not spending the time I need to with her. I'm forgetting how wonderful she is. I'm not looking for those great moments when we can cuddle and tickle and play.

Skylynn's future is of great importance. I spend so much time worrying about it and figuring out how I can get the best therapies to help her have the best future she can. But in all of that I am neglecting the present. When I get home I hope to find some balance between the two. The future is important - but the present is as well. Time to stop sacrificing one for the other and find some balance.

"The clock is running. Make the most of today. Time waits for no man. Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why it is called the present." - Alice Morse Earle.

Location:Washington D.C.

Autism Law Summit

2012-09-07T12:37:00.001-06:00

I wanted to take a quick second and write a post about the awesome Summit I am attending right this minute. I am at the Autism Law Summit in Washington DC with a room full of autism advocates from all over the country who are all fighting to get meaningful autism insurance passed, expanded, or implemented, in their own state. The people in this room with me range from high ranking government officials, providers, professionals, self advocates, and parents. Sitting here with these amazing people is inspiring. I am excited to share with you what I learn.

So far I can share that I have learned a fantastic new Code Brown term - "poop-casso." Thanks for that Mirella. :)

Watch for more posts soon.

- Posted using BlogPress from my iPad

Location:Washington DC

A report from the front lines

2012-09-01T23:25:00.000-06:00

This is the type of post I never want to write. One about how human I am and how hard autism can really be. In the back of my mind I think “Well, you could just not write this. You could pretend you’re more put together than you are. You could just keep your worst nights to yourself.” And I must admit, this voice in my head has a very persuasive argument. But I know two things. One – You read my blog because I’m honest. And two – The people who saved me last night were other autism parents who admit to sometimes feeling as if they live in a war zone. So maybe you had a similar night last night, maybe you’ll have a similar night tomorrow. Either way I want you to know I’ve been there. Because things get really scary when we think we are alone in our darkest hour.

I was going to start by telling you about how stressed I was and how Skylynn has been being overly frustrating lately. But I decided in all reality that doesn’t necessarily matter. We are all stressed, and all of our kids (both autistic, and NT) know how to push our buttons for extended periods of time. So I guess in some ways this could have been any day that I was at the end of my rope by bed time.

So last night my own personal meltdown started because Skylynn wouldn’t take her medicine – again! She is starting to have withdrawal symptoms after not taking her night medications for many nights in a row. At least that is what it seems, hard to know when she isn’t very verbal. So knowing she wasn’t going to take them again, even after I had tried every creative trick I could think of, made me LOOSE it last night. As she started into another meltdown I just couldn’t take it another second. I have never lost it in front of Nate, but I did.

I grabbed Skylynn forcefully by the arm;

Started screaming about how frustrating she was being;

Dragged her down the hall;

Then I threw her in her room and slammed the door.

I stood there with my heart racing, mad as hell, as Felicity began crying because I woke her up, and Nate looking at me like “ok what the hell do I do now.” I could tell he wanted to go comfort Skylynn but he had no idea how I might react. So I told him to do what he wanted and jumped in the shower to try and calm myself down.

The whole thing was a horrible terrible mess. I was so mad, and yet felt bad, and almost didn’t feel bad, all at the same time. I am all about autism positivity but when we are being completely honest we have to admit that sometimes autism feels like a war. Sometimes it pushes us to the point that we just can’t take it anymore. Studies have shown that autism parents have stress levels similar to those of combat soldiers. And sometimes I feel it. I feel so stressed out that I can’t take it another second.

There are so many things that are so difficult about this situation but one is not knowing when we’re about to snap. I understand that if I’m getting to the point that I’m going to snap, I need to back away from the situation and take a time out. But in reality that line between losing it and keeping it together is so thin I think it’s almost impossible to know when I’m close. Skylynn having meltdowns and making me crazy is a very normal part of my life. Sometimes these meltdowns are intensely frustrating, but I hold it together. I don’t know what really separates the days that I can deal with it and the days that I can’t until after I’ve lost it (thank goodness I hardly ever lose it to the degree I did last night.)

I think another really difficult thing is being so incredibly mad – but at what? When I’m mad at Nate, I know I’m mad at him. When I’m mad at a coworker, I know I’m mad at them. They have control over their actions. I think it would even be easier with a NT kid. If they do something they know they shouldn’t, you can be mad at them. But with autism, how can I be mad at her? Skylynn was being incredibly difficult, so incredibly difficult, but can I be mad at her for it? I don’t know – she has autism. Do I know how much of last night was her being a difficult 4 year old and how much was autism? No – which sucks! Can I be pissed off at autism? No – because I don’t want Skylynn to feel like that part of her is bad. Autism has aspects of it that are both great, and difficult. So who can I be mad at? I’m so mad I could throw things across my house, and punch a hole through the wall – but who am I mad at? Nothing? Everything? I don’t even know.

So, after I got out of the shower; Nate got Skylynn to bed; and I got Felicity to bed; I sat there waiting for him to tell me what a horrible mother I was. But he didn’t say anything about it and changed the subject as if nothing happened. I couldn’t believe it. I was so disappointed in myself, still pretty irritated, and had no idea how to make sure this type of thing never happened again – and Nate just wanted to figure out what we were going to do for the next 2 hours before we went to bed. So I asked him about it. How wasn’t he pissed off at me? How wasn’t he disappointed? How wasn’t he incredibly concerned for the safety of his children? His response “let’s be honest, in some ways I expect things like this to happen.”

Wow did that change my mood so fast. One – I felt so grateful to have such an understanding, loving, wonderful husband. And two – I guess in some ways he is right. How can we be in such a stressful situation day in and day out and not have moments like this? They are horrible and awful and I am not justifying my behavior. But I’m only human. That is what is so frustrating when people say “God must have given you a special child because you could handle it.” Well guess what – Sometime I CAN’T HANDLE IT. I can’t. That’s all there is to it. I’m an imperfect mom who does imperfect things who sometimes can’t take the pressure. That’s the truth of all of it. Maybe half of my problem is I believe I should always be able to take it perfectly without getting upset and losing it so I leave myself in situations where I am pushed to the max because somehow I should be able to handle it – because somehow I’m special.

Well in that way I’m not special. I’m not blessed with a magical amount of patience. I’m not immune to incredible amounts of stress. I’m not a zen yoga master who can keep my cool through incredibly frustrating situations day after day after day – and that has to be ok. Because in the end I love Skylynn more than anything in this world. And as imperfect and awful a mother as I am some days – I’m the only mom she has and I’m trying my damnedest to do the best job I know how.

So do I hope nights like last night never happen again – absolutely. Will I try my best to be more on top of my emotions and understand when I need to walk away – yes. But even with my best efforts will nights like last night happen again – probably. And when it comes right down to it – as much as it sucks – it just has to be ok. Because I’m doing the best I can.

Excited to be part of such a great program!

2012-08-23T22:25:00.001-06:00

Today was my first day as a parent participant of the URLEND program and I am SO excited! URLEND stands for "Utah Regional Leadership Education in Neurodevelopmental Disabilities." It is part of the larger LEND system which has numerous locations all of the county. To sum URLEND up in a nut shell is hard to do. But I'll try. Basically it is a interdisciplinary group of professionals who spend a year in classes, clinics, working with parents, and on leadership projects, with the goal of gaining knowledge, skills, experience, leadership training, and a network, in the field of neurodevelopmental disabilities.

It is a mouth full and hard to sum up. But the really cool thing - they are very very individuals and parent focused. It is awesome to see a group of professionals really looking to understand the needs and strengths of the family, and the individual, instead of coming in thinking they have all the answers. I am part of it as a social worker, advocate, and a parent... and trust me I chime in so the parent perspective is heard. There are other parents involved with other perspectives and children with other disabilities so it is a rich group of providers and parents.

There are so many amazing talented professionals, parents, and even an amazing young adult with autism, who are involved this year. I'm really excited to get to know them and understand more from their perspective. I'm going to be involved in group discussions, seminars, a lot of autism specific training, parent panels, and I am the "parent participant" on the leadership project titled: "Successful coping strategies in parenting a child with a disability." I'm not sure I'm suppose to be publishing this but no one told me not to so why not right? Here is what the intent of the leadership project is: "Most of the literature on parents with children with disabilities focuses on the difficulties, stressors, and problems that these parents face. In this study, students would have the opportunity to study the psychosocial strengths of parents who are successfully coping with raising their child with a disability."

So... I don't know if I am always successful at coping with raising a child with a disability, but apparently the staff of the URLEND program believed I would be the right parent for this project - so we will see. My fellow group members don't know about this here blog yet. But... I might see if I can rope you - my readers - into this some how. Because I know so many of you have many answers on how to cope with parenting a child with a disability that I don't.

So watch for continuous updates on what I'm learning and doing with URLEND. Also if your interested in being involved in a LEND program near you make sure to look into it. I wish I had a website to send you to but its good to know that there are 34 LEND programs funded in 27 different states. Also the URLEND program covers 5 states: Utah, Idaho, Wyoming, Montana, and North Dakota. So if you are one of those check out how to sign up as a participant here.

Where does typical end and autism begin?

2012-08-13T21:26:00.000-06:00

I think the question of where does typical end and autism begin is one all of us autism parents struggle with daily. We know that we can’t treat our children with autism completely “normal.” Their brains work in a different way and their world sometimes has very different, odd rules that ours does not. But the question comes in when are we making appropriate accommodations versus when are we not appropriately addressing developmentally normal maladaptive behaviors?

I hesitate to even write about this and am trying to choose my words very carefully. I do not want this post to ever be used against an autism parent by someone who thinks they know better. But I want to write about this topic still. So please bear with me and understand this topic is extremely complex and every child is different. I personally would always error on the side of the parent.

Now to the story.

So Skylynn can have MAJOR meltdowns sometimes. They started going up in frequency and intensity before we began packing or moving and have stayed pretty consistent through the change. At one point Nate and I noticed two things. 1-The meltdowns were generally triggered by Skylynn not getting something she wanted. If the answer was “no”, “not right now”, “maybe later”, or even “wait”, Skylynn would frequently have massive meltdowns. 2-The meltdowns seemed to have a sensory element to them. They were started by some form of “no” or “wait” but frequently turned into long lasting pretty intense meltdowns with yelling, rolling around, hitting, kicking, etc.

So once we started getting settled into our new house we decided Skylynn needed some new sensory toys to help her become more regulated. Skylynn’s meltdowns immediately calmed down in intensity, but not frequency.

At this point it seemed pretty apparent to Nate and I that Skylynn was going through a developmentally normal stage of hating to hear “no” or “wait”. So the question became, how in the world do we deal with this?

We consulted with her therapists and thought through their recommendations and what we know of Skylynn. The strategy we decided to try was to completely ignore meltdowns and give her lots of positive praise when she was being calm and happy.

Wow did Skylynn go CRAZY for 5 days or so. She had what our therapists refer to as the “extinction burst” where she was trying everything she possibly could to get our attention when she had a meltdown. Her last major meltdown was really bad. I was feeding Felicity so I couldn’t leave the room. I just sat on my chair while Skylynn hit my back as hard as she could for a long time. I would move to a different chair and she would follow. I just made sure my back was to her. Now she is a 4 year old so it wasn’t excruciating or anything – but it did hurt.

This entire time we tried really hard to notice every time she was happy and calm and to compliment her for it. She loved the compliments. Skylynn loves kisses, cuddling, hugs, and praise.

Well it seemed like the morning after her biggest meltdown they were gone – or at least 90% gone. It was almost shocking really. I remember she hesitated to ask me for something she knew I wouldn’t give her. After she did ask I told her “sorry Skylynn, maybe later” and she was fine with it. She just sat at the table and started eating her breakfast. Wow!

So it worked then. A typical behavior strategy for a typical childhood behavior mostly solved our problem. I have talked to friends of mine with neuro-typical kids about this strategy before – but never thought of implementing it with Skylynn. I guess somehow I just assumed Skylynn having autism would make typical strategies not useful – which can be true, but not always. The whole thing just made me rethink Skylynn and autism quite a bit.

I almost wonder if we autism parents swing like a pendulum with an autism diagnosis. First we are in denial and believe they are more on the typical side. Then we swing over to autism and believe their behaviors all are a result of some difficulty due to autism. Then maybe we swing back and much closer to reality. Maybe this doesn’t seem to be the case for many parents but for us it has been. Now, honestly, I’m sure we will always swing slightly from side to side as Skylynn learns and grows and we learn and grow too. But this whole thing has been pretty eye opening for me as I realize I have been attributing more to autism than I should have been.

In the end this has given me a chance to see past “autism” and “typical” a bit more to try and see just who Skylynn is. She is definitely my favorite 4 year old on the planet who will never be defined by the words “normal” or “autism”. She will always be defined by who she is – Skylynn.