A blog about resources for autism and care and treatment.

Saturday, May 25, 2013

Dedicating Our Hearts

On this special weekend, we dedicate our hearts to remembrance of those men and women who have served their country since its inception, in both times of peace as well as war. And we dedicate ourselves to helping the military families who continue to protect us  today get the help and treatment their children with autism need and deserve!


Friday, May 24, 2013

Important Legislative Victories!

This just in from Senator Darryl Steinberg's office, our champion for families living with autism in the state of California. Remember to support the legislators below who are helping our families get the treatment and services they need to be safe, happy and productive individuals.
*Nancy Alspaugh-Jackson, * Executive Director* ACT Today!
(Autism Care and Treatment Today!)*
Important Legislative Victories !The Senate Appropriations Committee has just finished its final review of bills that were being held due to projected costs.  Please note that  the following FIVE BILLS were approved and are being referred to the Senate floor:

·      SB 158 (Correa) - Autism services: demonstration program

05/23/2013 Action: Do pass as amended.  (amendments make the bill’s requirements permissive)

·      SB 208 (Lara) - Developmental services: request for proposals

05/23/2013 Action: Do pass as amended (amendments would eliminate need for state regulations and eliminate requirements to vendor request for proposals)

·      SB 367 (Block) Developmental services: regional centers: cultural and linguistic competency

05/23/2013 Action: Do pass as amended (amendment would only require certain  training for board members)

·      SB 468 (Emmerson) Developmental services: statewide Self–Determination Program

05/23/2013 Action: Do pass as amended (amendment would delay deadline for Medicaid waiver application)

·      SB 555 (Correa) Developmental services: regional centers: individual program plans and individualized family service plans

05/23/2013 Action: Do pass as amended (amendments narrow translations to certain activities)

SB 126  (Steinberg) has already been approved by the full Senate and currently awaits a policy hearing in the Assembly.

The following legislation (held in the Appropriations Committee) will become “two-year” bills:

·      SB 163 (Hueso) - Developmental services: health insurance payments

05/23/2013 Action: HELD in committee.

·      SB 319 (Price) - Developmental services: regional centers: data compilation

05/23/2013 Action: HELD in committee.

·      SB 321 (Price) Developmental services: regional centers: performance contracts

05/23/2013 Action: HELD in committee.

Today’s approval of the SIX AUTISM BILLS is an important outcome and reflects Senator Steinberg’s ongoing commitment to some of California’s most vulnerable families.  Furthermore, TWO ADDITIONAL AUTISM BILLS are likely to be approved in the Assembly.

Wednesday, May 22, 2013

The Dark Side of Autism

I agree with the writer of the blog below -- autism has a dark side, and we need to discuss it and confront it, or we will not get the support our children need to not only live successful lives but in some cases live, period. In fact, we will lose more of them to senseless deaths, institutionalization and wasted existences -- and that is unacceptable

In addition to the resource listed below, the NAA's Big Red Safety Box, you can donate to ACT Today!'s SOS Fund to provide immediate help to families who have children with autism in life threatening situations:

Nancy Alspaugh-Jackson, Executive Director, ACT Today!

Second Child with Autism Wanders, Drowns in One Week

By Kim Stagliano
I awoke to an email on Saturday, the subject line read, "My son is missing." I paused for a moment. You know how email can be - lots of funky subjects that lead to phishing emails of all sorts.   But I opened and read the email.  And then I Googled the name of the child and the details that the sender had provided.  My God, her son was missing.

Owen Black had wandered away from his holiday condo in Perdido Beach,

Owen Black
Owen Black

Alabama and within two minutes, was out of his mother's sight, having slipped out the door.

I sent out a FB missive that hundreds shared and Tweeted for anyone in the area to try to help. Joe Scarborough from MSNBC, a Pensacoloa native, retweeted the call for help. Hundreds turned out to search. To no avail. Owen, like Mikaela Lynch last week, wandered and drowned.
THIS is the reality of autism and all the blue buildings and "It's just a difference" t-shirts and the "We don't need a cure - just accept them" in the world doesn't mean jack diddly squat. AUTISM IS AS DEADLY AS CANCER FOR MANY CHILDREN.  I woke up thinking of Owen. And now the news we all dreaded. AGAIN.

I Tweeted the sad news about Owen - and yes, I blamed his autism. Someone Tweeted back, "It wasn't the autism you moron" or something to that effect.  And then she blamed "negligent parents." Really? Must have been one of the "Autism is a difference not a disability" crowd.  Or perhaps a cruel skeptic - as there wasn't a scintilla of emotion for the child, for Owen.

I disagree. At all levels, from a preverbal child like Owen and Mikaela (and my own Bella) to an adult with Asperger's - autism affects day to day life in myriad ways. And yes, some are deadly. And as far as "negligent parents" go? Well, yes, I am quite sure there are rotten, negligent parents in the autism community, just as there are anywhere. The parents I have met have moved heaven and earth to keep their kids safe. I know one Mom who slept on a mattress barricading her front door in case her son tried to slip out at night. Another Mom whom I know to be a stalwart of the community, her son was found walking along a busy state route having slipped away - alive by the grace of a guardian angel. I lost my own daughter in Orlando as she quietly slipped out a hotel room door and got onto an elevator to the lobby of  a 22 story property on 2200 acres while I was in the bathroom.  We are not negligent - we are human.   I remember being pregnant with Bella and so tired by 2pm that I had to sleep. I put on the TV and locked my bedroom door and put a bell on a chair in front of the door, knowing that Mia and Gianna would knock the bell to the ground and I'd hear it before they could leave my room. Just to get a 30 minute nap. 

I'm all for accepting my girls - I'm all for people being aware of autism. But they are hardly the priority when the rate is 1 in 50 school children. We HAVE acceptance in every part of our life for the most part - and you'd have to be deaf, dumb and blind not to be aware of the word autism.

It's the glossed over version that bothers me so much, as if the dark side of autism is too shameful to share and it's incredibly cruel to the people with autism who suffer, and their families.  "Autism? Isn't that smart quirky kids?" It's like saying, "Cancer? Isn't that a slightly darkened mole?" Well yes for some it is - but for others - probably the vast majority? It's not a that simple -- or survivable.

Please support the National Autism Association Big Red Safety Box program. $35 buys a safety kit for a family.  And if you are in need of a box, by all means contact NAA at the link above.  To the families of Mikaela and Owen we can only express our sorrow.

Kim Stagliano is Managing Editor for Age of Autism.

Monday, May 20, 2013

Brother and Sister Battle Odds to Overcome Autism

Seven-year-old Torin Phillips and his 6-year-old sister, Kaia, are on a mission to overcome the limiting effects of autism. The two siblings, who live in Forestdale, MA, receive intensive applied behavior therapy (ABA) from the Center for Autism and Related Disorders (CARD), considered one the world’s most effective treatment centers using evidence-based, state-of-the-art therapy. 
At 18 months, Torin was nonverbal, did not point or answer to his name, and had little interest in toys. At the age of 22 months, he was initially diagnosed with pervasive developmental disorder not otherwise specified (PDD-NOS), according to the DSM-IV criteria, a diagnosis that is used for "severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills or when stereotyped behavior, interests, and activities are present.” As it became clear that Torin was profoundly affected by autism, and his diagnosis was changed to autism by the time he was three years old. 
“Torin is a medically complicated kid, just as many kids on the spectrum are," says Torrin's mother Kerri Phillips. "We now know he has Crohn’s and auto immune issues and that he appears asymptomatic many times even when something is wrong. Torin can’t overtly communicate his pain to us.  Before we knew of the Crohn’s, he went seven straight months with little to no sleep.  He would whoop and bang his head all night.  He was never violent, but his need for all the lights on in the house and all the doors closed 24 hours a day was debilitating. It was stressful and difficult to take him anywhere out of the house including school because his undesirable behaviors, which we now know were caused by pain, would spike.  We stopped participating in family holidays for a time, didn’t visit friends, didn’t invite people over, and couldn’t leave him with a babysitter. We felt powerless." 
“In spite of this, we were doing ABA therapy with him with local providers, but initially we couldn’t get even half of the 40 hours per week that we knew the research-based, peer-reviewed studies demonstrated would produce the best outcomes for a kid like Torin. At that time, none of the local Massachusetts agencies that we tried worked from a curriculum specific for kids with autism, had an intensive formalized training program for staff, or would help us track his medical treatments for Crohn’s, autism and autoimmune issues and cross-reference the treatments with his progress or setbacks to help us understand what treatments were working. Then, we found CARD.  The first weekend we started with CARD, I still remember being completely awed by how unique, caring and all-encompassing their approach was to Torin’s development and our involvement as a family. We had a means to get control of the autism; until that time, the autism was controlling us. I remember that my husband and I held back tears of relief one night because, after just a short time, it was so completely evident that this program, the people, and the training were game changers for our family. CARD gave us hope again.” 
When Torin was three-and-a-half, the Phillips started a CARD 46-hour-per-week intensive treatment program for Torin and began working with three CARD-trained therapists.  Their local school now uses Skills, the CARD curriculum, and uses CARD eLearning to train school aides.  Torin is now in school and, through the CARD program, has learned 250 sight words. This past March, he began sounding out words for the first time on his own, and he now takes part in the regular education reading group in his class.  While he still has limited language, he requests what he needs and states his preferences, writes his own name, and types and prints out other work on his iPad. He has also learned to play 10 songs on the piano including "God Bless America" which he plays for his class while they sing. He also just received a Golden Eagle award at his school for best behavior in his classroom and his reading work. 
Torin's sister, Kaia, was observed closely since birth. Kaia seemed to be developing at a typical rate; she pointed and responded to her name when called. In fact, her parents thought she might be gifted because she knew at least 100-200 sight words/labels by the age of two.  However, CARD pointed out that, in spite of her advanced decoding, her ability to link two words together into approximated sentences or follow multi-step direction did not exist. Kaia was diagnosed with PDD-NOS at 18 months. She began receiving 20-25 hours per week of applied behavior analysis (ABA) therapy from CARD immediately. At age three, she was also given a clinical diagnosis of Hyperlexia (a precocious early ability to read/decode and in most cases accompanied by difficulty with comprehension and encoding). Kaia is currently a social butterfly, and her teacher describes her as a very caring and kind student. She attends full-day kindergarten with minimal assistance. She still receives 15-20 hours ABA therapy with CARD. Her family believes it is likely that her diagnosis will be removed within the next few years. 
CARD will feature Torin and Kaia’s unique and uplifting stories in its
“I want to share my family’s story because many parents are still encouraged to ‘just wait and see,’ instead of seeking a pediatric neuro-developmental assessment when they begin to have concerns about their child, or in other cases, a parent may receive an autism spectrum diagnosis for their child and then seek a second opinion because they fear the label or think of ABA as cruel and grueling for a young child.  No one wants to hear the words autism in regard to their child, but it’s important to understand that the earlier a child receives a diagnosis and begins treatment, the better the outcome will be, not only for the child but for the whole family.”  
According to the Centers for Disease Control and Prevention, 1 in every 88 children in America is diagnosed with an autism spectrum disorder. Autism is more prevalent than juvenile diabetes, pediatric cancer and childhood AIDS combined. 
For more information about “Mission Possible: Portraits of Hope,” visit http://portraits-of-hope.centerforautism.com.

Tuesday, May 14, 2013

Events to Support ACT Today!

Kid ACTivist Portrait Campaign

Ride for Autism - 8th Annual Autism Wine Maker Event
Sunday, June 2, 2013 at 11:30AM-3:30PM
Redondo Beach Chart House, Redondo Beach, CA

Stephanie’s Day
Saturday, June 8th
CBS Studios

Train 4 Autism Culver City 5/10k Run
Sunday, June 16th 
Media Park – Culver City, CA

Joey Meyers Foundation SCRAMBLE FORE THE KIDS benefiting ACT Today! for Military Families
Monday, June 17, 2013
Talega Golf Club
990 Avenida Talega, San Clemente, CA 92673

Autism Film Program for Military Children sponsored by Cox Communications
Monday, June 17th – Friday, June 28th (excluding weekends)
San Diego, CA

TheSpeedGamers - Weeklong Final Fantasy Marathon to Benefit ACT Today!
Monday, June 24, 2013 - Monday, July 1, 2013

Ride for Autism 2013
Saturday, August 3, 2013
Starts at Laidlaw's Harley-Davidson in Baldwin Park and ends at Sagebrush Cantina in Calabasas

8th Annual Denim & Diamonds for Autism
Sunday, October 6, 2013
Four Seasons Hotel Westlake Village, CA

Oxnard Salsa Festival Kick-Off 
Wednesday, May 29th, 5:30-7:30PM
Sugar Beets Restaurant – Downtown Oxnard

ACT Today! & Gull Wings Children’s Museum Pre-Event
Saturday, June 29th, 5:30PM-7:30PM
Tower Club - 300 East Esplanade Drive, Oxnard, CA

ACT Today! Booth at Oxnard Salsa Festival – Dancing with Our Community Stars
Saturday, July 27 – Sunday, July 28
Downtown Oxnard, CA

Dancing with Our Community Stars – THE BIG SHOW  
Sunday, July 28th 
Gabriela arrives by 12:00PM
Plaza Park, Downtown Oxnard

OC Suitcase Soiree
Saturday, August 31, 2013 at 6:00PM-11:00PM
Santa Ana, CA

San Diego Film Festival
Friday, October 4, 2013
San Diego, CA

Thursday, May 9, 2013

Blessing in Disguise

For the next few days, I will be on vacation from my job as executive director of ACT Today! Of course, I have not had a real vacation (you know, the kind where you lie on a beach, go out to dinner, travel to foreign countries) since my son Wyatt was born 11 years ago. Most of the last 11 years were spent visiting my aging parents, now passed away, and then after Wyatt regressed into autism at 2, vacations were not really vacations -- more like experiences. This "vacation" will not be much different.  I will be on my way to the mountains of California for 3 days of outdoor school, as a parent chaperone for Wyatt and his class of fifth graders.

Of course, I had to volunteer to chaperone, IF my child with autism wanted to be a part of this experience, as his regular school aide is not authorized to go on an overnight. And because I can't sleep in the boys cabin, my 68 year old husband will be going too. That would be the same 68 year old husband who went through chemotherapy and many other invasive cancer treatments this last year. I have asked him 100 times "are you sure you are up for this??

His response, a weak  "Yes, of course”

So, basically I am as worried about him as I am about Wyatt getting through this outdoor adventure.

As most of you who are parents of kids who have autism know, this kind of undertaking requires a lot of work before you take one step out the door. I used to envy the moms of "typical" kids, you know, the ones that can throw a few clothes in an overnight bag while we prepare truck loads of special food in a cooler, spend hours putting together supplements for each day spent away, make sure we pack the comforting items that are part of a routine  that our kids might need to function. ( Mr. Pillow is on his last legs, a mere shadow of his former self, which was a full sized Thomas pillow, now patch worked together with one little blue strip remaining,  so this could be his last out of town adventure).

Then there is the anxiety for what may happen -- will he behave, will he have a meltdown, will he be able to go to sleep in the cabin, will he sleep through the night? Will my husband do any or all of the above as well?

But recently, despite all the preparation and worry, I have begun to look at things with a different perspective. Maybe all the time and effort we autism moms put into preparing for these things makes those experiences a little more memorable.  Maybe we have more of an appreciation for those things that other moms and dads take for granted. Perhaps the fact that we can't just breeze through  childhood is actually a good thing. Maybe I will cherish the small victories -- to be able to sit around a camp fire and see Wyatt actually listening to stories, to go for a hike in the crisp mountain air with him by my side --and those little victories will be lasting memories. Sort of blessings in disguise. That's how I'm going to approach these next 3 days, anyway. Yep, that's my plan and I'm sticking to it.

If you happen to hear of a dazed and confused middle aged woman lost in the wilderness of California searching for the nearest Starbucks, make sure you tell them it's me.

I'll write soon about this vacation -- I mean, experience. I am sure there will be plenty of fun stories :)  and hopefully a few lasting memories as well.

Thursday, May 2, 2013

A Mother's Worst Nightmare

Every autism parent who reads the story below lives in fear that this could one day happen to their child. Stories like this don't have to happen. We need to ACT Today! to get the proper care and treatment for every individual with autism. We need to pass legislation to insure that no family is ever in the position to have to make such a "brutal decision" as this one. Brutal is a word that applies to many other aspects about the autism epidemic in Canada as well as the United States. Until we start facing the reality about how widespread this epidemic has become, and how few resources we are devoting to it, families will inevitably be forced to make this type of decision. 

And that is the brutal truth.
*Nancy Alspaugh-Jackson, * Executive Director*
*ACT Today! (Autism Care and Treatment Today!)*

Toronto Star

Autism: Mother’s “brutal decision” to leave 19-year-old autistic son

Amanda Telford says she had no choice but to leave her son Phillip, 19, with Ottawa social services in order to get him the care he needs.
Autism: Mother’s “brutal decision” to leave 19-year-old autistic son
Parents of children with autism can run out of choices for care once their child turns 18.
By: Lesley Ciarula Taylor News reporter, Published on Wed May 01 2013

An Ottawa social services agency was looking for shelter Wednesday for a severely autistic teenager his parents said they were forced to leave with them.

Amanda Telford took her 19-year-old son Phillip to the Ottawa office of Developmental Services Ontario in a desperate move Tuesday — World Autism Day — after she and her husband decided they could no longer handle him.

“It was an absolutely brutal decision,
Telford told CTV News, which had cameras follow her and her son as they arrived at the Montreal Rd. agency offices.

“I did everything within the system I felt I could do.”

Phillip cannot speak and functions at the level of a two-year-old. He also suffers from Tourette Syndrome and diabetes. On the weekend, he had been in hospital after swallowing pills, wandered four kilometres from home and then slipped away again to a nearby home.

The teen is more than 6-foot tall and burly.

He had been on a waiting list for a year with DSO for a place to live, one of 393 people with developmental disabilities in the city of Ottawa in need of a group home, said Anna Lacelle, executive director of Service Coordination Ottawa, which works with DSO.

“Let’s hope for Phillip that we will be able to come together as a community to put something together,” she said. In emergencies such as Phillip’s, she said, the first task is finding a place with a suitable vacancy, she said. Such emergencies are hardest on families, Lacelle said.

“It’s hard to hear when someone is looking for Mama.”

A neighbour of the Telfords named Ray who knew the teenager years ago said Phillip had tried his door on Monday night.

“He was going door to door. My neighbour two doors down (told) me he had entered her house through the patio back door. Fortunately, she had heard of him and kept him calm and played high five with him.”

Amanda Telford, who worked as a social worker with the Royal Ottawa Mental Health Centre, played high five with her son at the door of the DSO Ottawa office as she reminded him how much his family loved him.

In his online comments, Ray said, “It is simply unacceptable that the only solution for these parents is to suddenly be out of options and support because this young man grew up.”
Teens with autism lose any entitlement to government services after age 18, and in many cases parents are left with no alternative but to abandon their grown children.

One Thornhill mother was advised by provincial officials to leave her 19-year-old son at a homeless shelter, the Toronto Star has previously reported.

The Star has documented the crisis in Ontario that families with autistic children face in a multimedia project nominated for a National Newspaper Award and a Michener Award.The series triggered an investigation into the particular plight of families with adult autistic children by Ontario Ombudsman Andre MarinThat investigation, said Marin spokeswoman Linda Williamson, has collected 722 complaints to date, many of them similar to the Telfords.

The Ontario Auditor General launched a review of services after the Star series and the province struck a panel of experts to examine the system.