Autism Waiver Update December 2013

Again our son continues to benefit from ABA therapy provided by the Utah Autism Waiver Program. He has meet his goals and is moving onto new ones to help with his life skills and development. We see marked improvements in him and it gives me hope for his future. As a parent I am really enjoying the much needed help in providing the one on one therapy for my son. As well as the much needed breaks provided by respite care.
One of our other sons would benefit greatly from ABA therapy, but such services aren't available at this time with our insurance. Sure, we could have him sign up for private ABA therapy, but that isn't doable with our budget, or with most families budgets. Challenging doesn't begin to describe what a special needs child or parent face every day. I only wish there were more programs like this for older children and adults with autism. I see and hear about new programs, services, advocacy, awareness, and understanding for autism often. So, I'm not giving up hope and will move forward with a willingness to work to help those with autism and special needs.

Susan Boyle - Asperger's Diagnosis

Singer Susan Boyle, a well know star from "Britan's Got Talent" shed light on her recent diagnosis of Asperger's Syndrome. Another example of a great mind, ability, and not letting a diagnosis stop you from achieving your goals.

http://music.yahoo.com/news/singer-susan-boyle-reveals-she-asperger-39-syndrome-170547225.html

Autism Wavier Update September 2013

I apologies for the sparse posts as of late. Hopefully, as my health continues to improve I will be able to post some more in the future. For now I will say my son is doing great with ABA therapy. We are noticing improvement in speech, social skills, and fewer refusals. It is a big relief for me, the parent, to have the added help in addressing challenges. It is such a relief to have help and breaks almost every day. I hope others are seeing the same results.

Special Challenges

This is very well done. It touches on the many side of having a child with special needs. I love that the parents are willing to serve and love their child unconditionally. Even better when a neighbor, friend, or teacher is willing to educate themselves and learn about that individual, and then serve the whole family.

LISTEN  SERVE  LOVE

Special Challenges from McKay School of Education on Vimeo.

What it's like to have a Brother with Autism.

Izzy Paskowitz Surfer's Healing - Watch how a pro surfer inspired autist...

Watch more here.

It's Not Holland

A realistic and honest analogy about the world of special need parenting.

It's Not Holland
-by my uber-awesome friend Rhy

Imagine planning a trip to Paris for you and your partner. You get your guidebooks, your luggage, your wardrobe and your plane tickets. You research everything about Paris so you'll be ready when you arrive. You make make reservations. You talk with friends and family about their wonderful trips to Paris and how much fun they had. The two of you talk everyday about how much you want to go to Paris and how amazing it's going to be when you get there.

You get on the plane and take off. Suddenly, without explanation, the plane is diverted. Then at 5000 ft you and your partner are yanked out of your seats, strapped into parachutes you only vaguely understand, and tossed out the door.

Some how you manage to make it to the ground. 

At first, you just sit, clinging to one another, checking to see if you have any broken bones. Once you're done thanking god that you're still alive, you dust yourselves off and look at the terrain. You look at each other and reassure one another that you're going to get out of this place.

Your first few days in the desert are exhausting. Just getting your basic needs met feels overwhelming. You feel alone, terrified and honestly- You're not sure if you're going to make it. Sometimes you fight, not because either of you is doing anything wrong- but because you're both tired and frustrated, there is sand everywhere, not enough water and there is no one else to yell at. 

After many days of struggle, you finally make it to a village. The first thing you find out when you arrive, is that this settlement is made up of people who also got dumped out of a plane. This is what they tell you:

We are on the moon! 
No, this is Arizona. 
No, we're in the Australian Outback!
It's the airlines fault.
No. It's the flight attendant who pushed us out.
Oh! Another passenger pushed me out. How did that crazy person get past TSA?
There is no hope of rescue. 

Wait! There is a rescue effort underway. 

There is an 80% chance you and your treasured partner are going to crumble under the strain of this experience. 

No, you won't, this experience will make you stronger! 

The desert is a gift! 

No, it's not. It's a war and war is hell! 

Trying to make sense of this, you look around and say, "How did this happen? What made our plane go off track, when all the other planes made it to their destination just fine? If only we'd flown on a different airline. Who is right? Are we going to end up divorced or not? Is there a rescue party coming? Why are all of you talking at once? 

Everyone in the crowd starts to shout LOUDER. Their voices jumbling into a unintelligible cacophony . Then, it dawns on you that maybe there are no right answers, because no one really knows. This is more terrifying than any answer you could have heard.

So despite being overwhelmed, despite struggling for the basic necessities and despite not knowing how you got there, you get on with the business of living your life. It's hard. It makes you angry, not at anyone in particular, just angry because it wasn't supposed to be this way. There are moments when the absurdity of it all makes you laugh. You and your partner discover that there are gorgeous sunsets in the desert and here, the stars shine with crystalline clarity. You smile a little more often and you realize that going to get water every day is doable once you know where the water hole is. You're scared sometimes, yes, but not as often as when you first landed. There are days when you wake up and wonder how you are ever going to make it through. At times, you're lonely for all the friends you had who went to Paris. Sometimes you don't recognize this person you're becoming or the person your partner has transformed into. 

The desert is your new normal and once it becomes familiar, it's more understandable. You know which plants are poisonous, how to get sand out of your sleeping bag and how to be patient when your partner is screaming "ALL I EVER WANTED WAS A CROISSANT!" The path to the water hole is well worn. You learn how to handle your own meltdowns and you figure out that there are some wonderful people here in the village. Your skin gets toughened by the sun, and you realize you don't need Starbucks to get through the day.

Sometimes at the end of the day, as you gaze up at the endless sky, you wonder, "What would Paris have been like?" But then you realize that the desert has become your home- and you wouldn't give it up for the world.

Craplosion

I read this article a few years ago, and it goes out to my friend who didn't just have a crapisode but an craplosion with 2 pools, a deck, no diaper, and a dog diarrhea scented aroma for the backyard. 

The Crappy Life of the Autism Mom
by Kim Stagliano
Posted: 01/03/07 05:05 PM ET

"Twice last month, we had a "crapisode." What is a crapisode? (This is where you might want to stop eating and put down your beverage.) My 10 year old (#2, appropriately for the purposes of this entry) pooped in the toilet. That is reason to cheer, believe me. Toilet training is a major issue in my section of the autism community. Our kids can wear diapers into their teens and beyond. So Miss G pooped. Hooray! But Miss G forgets to flush. And she rarely closes the lid. Not hooray.

Miss Peanut, my 6 year old, seems to believe that being a Virgo means she simply MUST swim in any puddle larger than spit. The toilet is like an Olympic sized pool to her. So Peanut goes into the toilet after Miss G has had her, ah, success. Peanut flings kaka everywhere and gets it all over herself, the floor, the walls, the tub, the baseboards and the window. Wes Craven could not film anything scarier than what I saw that school morning, 35 minutes before the bus was due to arrive. That's a "crapisode." It happens in the blink of an eye while I'm washing dishes or doing laundry. I'm alerted by a splashing sound that drops a brick into my stomach. Miss G doesn't understand to flush and close the lid. Miss Peanut doesn't realize that a face full of feces is rarely considered a way to amuse oneself outside of the fetish community."

To read the whole article click here.

Autism Awareness Balloon Launch & Baseball Game

Autism Waiver #2

It has been over two months since we got the call saying our son has been drawn to participate in the Utah Medicaid Autism Waiver program. I am relived to say that the paperwork has been filled out, submitted, and finally approved. There was a delay waiting for some documentation from the doctors office which wasn't enough. So I had to find additional documentation from our personal records.

If you are a new parent to the autism world. I encourage you to keep a journal, document appointments, keep all your paperwork, diagnosis verification, anything else relevant to your child's medical/mental/behavioral history. With multiple boys on the spectrum I have a separate binder for each of them. There are countless times when I need to retrieve a document, look back to see what treatment was given, how they responded to the treatment, or remember dates. I takes a little effort at first to organize the paperwork, but it will be worth it and needed throughout your child's life.

Coming up this month will be an information meeting for several of the parents so we are aware of what benefits and services are included with the program. I will let you know how it goes.

Transitioning to Adulthood

Here is a link to some helps for making tradition your child to adulthood.

Great Ideas and Humorous

Check out this great article!!
Parenting Tips for Sticky Situations

Miss America and Autism

Miss America contestant's brave admission: "I have autism."

By Beth Greenfield, Shine Staff | Beauty on Shine – Wed, Jan 9, 2013 1:45 PM EST

"Alexis Wineman, an 18-year-old Montana woman who hopes to be crowned Miss America on Saturday night... Wineman, who is the current Miss Montana, is both the youngest Miss America contestant this year and the first ever to have some form of autism. The brunette beauty queen was diagnosed at the age of 11 with Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), which puts her on the mild end of the autism spectrum and carries symptoms similar to those of Asperger's Syndrome."

http://shine.yahoo.com/beauty/miss-america-hopeful-autism-could-help-184500843.html

LDS Disability Facebook Groups

LDS Disability Facebook Groups

By Christopher Phillips in LDS Disabilities (Files) · Edit Doc

Here is a quick list of LDS Facebook Groups and pages around disability topics. If you are aware of any other groups, please add them to the list.

If you see a need for a group that doesn't exist yet, please set it up and let us know!

AS/Autism and the Mormon Mindset

https://www.facebook.com/groups/275215582514829/?fref=ts

This is a group for any LDS person who has a mental condition that limits them socially. Specifically autism/aspergers.

LDS ASD - LDS Families with Autism (Closed)

https://www.facebook.com/group.php?gid=137278506310424

A group for LDS families with Autistic members. A place to discuss the challenges and joys associated with being called to be in a family affected by Autism.

LDS Autism in Canada (Open)

https://www.facebook.com/group.php?gid=2407150403

a group to help those of us LDS in Canada, to have a support group with a common belief

LDS Autism Spectrum (Closed)

https://www.facebook.com/groups/134367146695881/

LDS Disabilities (Open)

https://www.facebook.com/groups/ldsdisability/

General group for members with disabilities, family members, teachers, leaders or anyone else interested.

LDS Disabilities Arizona (Closed)

https://www.facebook.com/groups/277721832344941/

For Arizona LDS members or familiy members with disabilities or those interested in disabilities.

LDS Disabilities Forum (Closed)

https://www.facebook.com/groups/170421106362962/

General group for members with disabilities, family members, teachers, leaders or anyone else interested.

LDS Disabilities Help (Page)

https://www.facebook.com/LDSdisAbilitiesHelp

Seeking solutions to help those with disabilities fully participate at church.

LDS Down Syndrome Specific (Closed)

https://www.facebook.com/groups/339961916054037/

This page is specific to those LDS families that have someone with Down syndrome in their life.

LDS Progressive and Disabilities (Closed)

https://www.facebook.com/groups/280537385306524/

This group is only for those who want to promote progressive changes in the LDS Church by and for people with disabilities.

LDS Professionals Working with Disabilities (Open)

https://www.facebook.com/groups/230482110303991/

For LDS Professionals who work in the area of disability.

LDS support for people with Mental Health Concerns (Closed)

https://www.facebook.com/groups/148450984974/

This group is for members of the LDS Church who are diagnosed with a mental illness or disorder and their families, friends and leaders who would like to support them.

The Liahona Project (Page)

https://www.facebook.com/pages/The-Liahona-Project/226691350704148

An online community of Latter-day Saint families with special needs children and adults

West Jordan Region Special needs Mutual (Closed)

https://www.facebook.com/groups/136258442346/

A group to keep everyone updated in the Special needs mutual activities/when we meet for for Church.