Friday, October 1, 2010

I Love Autism... Really?

I subscribe the Autism Support Network email news and this is a great read.  When I first saw this article, I had to take a second look at the title, but I was amazed to find out that the writer and I feel much the same about autism.  I thought that her words were profound and touching... I hope you feel the same.

Sunday, September 26, 2010

Everyone Still Has Their Fingers and Toes!

Max and Avery are all settled into the center with great programming and structure. Zoe is a 2nd grader now and thriving, minus the occasional outburst and time spent out of recess (she is a boisterous one). I am back to work and have been pleasantly reminded how much I love teaching, especially special education and more importantly early intervention. The sky didn't fall nor did the glaciers melt... we have had a successful transition into our new lives and I am proud to say we have come out unscathed. Who says change is bad?  Looking forward to what the future brings...

Tuesday, August 17, 2010

Interesting Article from the Schafer Autism Report

Parents of children with autism: We struggle alone


Her day might begin at 2 or 3 in the morning, when her 9-year-old autistic daughter, Ashlyn, wakes up next to her. And from that moment on, Jackie Polvado's life is a full-out sprint.
"Ashlyn still sleeps with me because it's the only way we can get any sleep. But I've been up day and night, like when my daughter was up for 48 hours, screaming," said Polvado of Keller, Texas.
"It's exhausting, and there's no end in sight."
For families with children with autism spectrum disorders - a range of developmental disabilities that cause social, communication and behavioral problems - each day can be emotionally overwhelming, stress-filled and isolating.
Family and friends shy away. The child's behavior can leave parents prisoners, trapped at home. If they venture out, passers-by stare, wondering why the child isn't under control.
"Sometimes, the parents think they're admitting failure when they ask for help," said Shanel Tarrant-Simone, the single mother of twin 10-year-old autistic sons. "'I'm the parent; I should know how to deal with it.'
"But no parent is equipped to do this."
And while neither of these moms could imagine hurting their children, they can begin to understand the hopelessness Saiqa Akhter may have felt when she allegedly killed her two children in Irving, Texas, last month, or how overwhelmed a single mother in New York was to kill her 12-year-old autistic son and then herself.
"People on Facebook were very quick to say, 'Oh my God, how could she do this?' But I say, how did she get to that point?" said Tarrant-Simone of Frisco, Texas. "The isolation and hopelessness - I've felt them."
Still, nothing can excuse what these women did, Polvado said.
"The resources are there - there aren't enough of them, and they cost money, but there is help," she said.
But day in, day out, many families with autistic children say they struggle on alone.
"We don't have other friends coming and offering to babysit our children," said Clay Boatright of Plano, Texas, with wife Carole the parents of three daughters, including autistic 10-year-old twins. "They don't have friends inviting them over for sleepovers. What we have is people saying, 'Wow, that must be tough.'"
Unfortunately, the number of ASD cases is soaring. Statistics from the U.S. Centers for Disease Control and Prevention say almost 1 percent of children have autism or another ASD. Diagnoses in Texas increased 400 percent in the past 10 years, a trend that has officials searching for ways to teach affected students - and pay for it with the state facing a budget shortfall of up to $18 billion.

Meanwhile, tens of thousands of people with developmental disabilities in Texas spend years waiting for assistance.
"We're at 300-and-something now," said Tarrant-Simone, "and we've been on the list for five years."
Boatright said it takes about eight years on average to get to the top of an assistance list, depending where you live in Texas.

Dr. Catherine Karni, an associate professor of psychiatry at the University of Texas Southwestern Medical School in Dallas and medical director of the outpatient clinic at Children's Medical Center Dallas, said some of the increase can be explained by a broader definition of the autism spectrum, which includes Asperger's syndrome, Rett syndrome and childhood disintegrative disorder.
"So you have severely autistic children and others with something that doesn't show the full symptoms of autism," Dr. Karni said. "You have more people."
More awareness of autism and better diagnostic tools also increase the numbers.
"But most likely, there is an increase in prevalence. We don't know how much, or why. We believe there is a genetic component - all the research points to that, and this tends to aggregate in families," she said.
Some speculate that environmental pollution can be a contributor. Others blame childhood immunizations, though research hasn't shown any clear correlation, Dr. Karni said. Certain metals that used to be a part of vaccines have been removed, but cases of autism continue to increase.
With the causes unclear, there is no cure. "We have different treatments. We have behavioral treatments. We use medications in psychiatry that might help with specific symptoms," Dr. Karni said. "But they don't cure autism."
Early diagnosis and treatment are currently the best ways to bring improvements, Dr. Karni said.
"Our clinic goes down to 12 months of age, because the earlier the diagnosis and intervention, the better the result," she said.
"It's a small window of opportunity - a child's first five years - because of the plasticity of the brain at that age," she said. "After the fifth year, the results are not as good."
But getting an early diagnosis can be difficult.

Tarrant-Simone's sons were born prematurely, but were home within 11 days and showed all the normal signs of progress except for speaking.
"At 12 months, it just wasn't coming along," she said. But when she pointed it out to their pediatrician, she was told, "They're boys; they're preemies."
"You're a mom - you know something is wrong with the child," she said, "but they were doing all this other stuff - smiling, laughing, interacting with each other. So a lot of the concerns I raised were just swept under the rug."
Polvado's daughter was social, too, and developmentally advanced. She had no problems with language. "Her first word was 'cat,'" her mom said. But there were mild signs at an early age - she hated the sound of laughter, even as an infant.
"Then it was a slow progression," Polvado said. "She started obsessing on eating only certain foods. And her language was slowing down. It wasn't functional. She could say 'cat,' 'dog,' 'shoe,' but she would never say 'juice' because she was thirsty.
"I knew something was wrong and asked my pediatrician about it, and he said don't worry about it. Everyone said nothing was wrong."

The American Academy of Pediatrics has worked over the last few years to educate pediatricians on ASDs, Dr. Karni said.
"Obviously, a child who doesn't talk may have other things, too, so it isn't easy to make this diagnosis," she said. "The important thing is to send the child to specialists. Pediatricians need to have their antenna up and refer these cases."
But if that doesn't happen, she said, parents need to find services on their own.
Even if the diagnosis comes too late for early intervention, some parents believe that appropriate kinds of education can provide the life skills their children need.

"As kids are diagnosed and progress through the school system, we need to identify what their true skills and talents are," Boatright said. "What are their strengths? What do they like to do? How can that be enhanced and made marketable?"

The need for proper programs is a national issue that needs immediate attention, said Rita Shreffler of Nixa, Mo., executive director of the National Autism Association.
"Almost 1 percent of the kids in this country have autism," she said, "so what do we do?
"A study a few years back said the lifetime cost of care for individuals who need round-the-clock help is $3.2 million," she said. "I don't think people realize that 1 in 110 children or even more have an ASD, and they're coming of age. So it's important that we find treatment.
"Otherwise, this will fall to the taxpayers, at $3.2 million each."

Naturally, the future hangs most heavily on the parents of autistic kids.
Will there be a cure someday? Who will care for their child when they are gone? Can the child find friendship, happiness?
"I have a motto in my life: There's no such thing as false hope," said Polvado, who with her husband, Lamarque, publishes a magazine called Connections Kids to provide a list of available services. "I hope for the best. I hope Ashlyn will recover and find her dream job, get married and have children. That's always going to be my hope.
"Then, of course, there's reality. The reality is we may not achieve that. So we take it day-by-day, hour-by-hour. I'm hoping for recovery, I'm working for recovery. But if in 10 years she can function but needs assistance, I'm OK with that.
"I just want Ashlyn to be happy and healthy."

- Roughly 1 percent of children in the United States - 1 in 110 - have an autism spectrum disorder, with developmental disabilities running from slight to severe.
- ASDs occur in children of all racial, ethnic and socioeconomic groups, but disorders are four to five times more likely in boys than girls.
- Studies of identical twins show that if one has an ASD, the other will be affected 60 percent to 96 percent of the time. In nonidentical twins, if one has an ASD, the other is affected 0 percent to 24 percent of the time.
- Parents who have a child with an ASD have a 2 percent to 8 percent chance of having another affected child.
- A 2009 report showed that 41 percent of children with an ASD also had an Intellectual Disability - an IQ of 70 or below.
- About 40 percent of children with an ASD don't talk at all, and an additional 25 percent to 30 percent have some words at 12 to 18 months of age and then lose them. Others may speak, but not until later in childhood.
- On average, medical expenses for someone with an ASD are about five times higher than for those without an ASD.
SOURCE: U.S. Centers for Disease Control and Prevention

Many websites offer information on ASDs, from support groups and service providers to age-specific information that could help indicate whether a child has a disorder.
U.S. Centers for Disease Control:
Autism Society of America:
First Signs:

This article resonated with me greatly. I think so many of us feel as though we struggle alone while we are trying to do what is best for our children and families. I don't think we are truly alone as ASD is not all that uncommon in today's world and personally I find great comfort in those who are sharing similar experiences. The isolation is very true though. I feel isolated from many family and friends, but it is important for me to not let that sadness overwhelm every day. I don't like how this article sympathizes with the Texas mother who killed her own children because she didn't want them to have autism, but I appreciate the viewpoint and don't know her personal story. Instead I feel that mother should have shown strength and resilience in the face of despair, which could have proven to be a useful life model for her children who are the ones truly suffering. If you give up and make autism seem like a death sentence then  you are not only failing yourself, but your children as well. It is not an easy life we lead, but I am grateful for the love and happiness of all my children. 

Friday, August 6, 2010

The Little Things

As summer begins to wind down I am delighted to post that this has been one of the best ever, but not because of any big trips, weddings, reunions or "usual" occasions of the season. Instead this has been a summer of new beginnings and changes. Max and Avery have moved on to the center and are thriving. Zoe is enjoying a season of freedom as we have the option to do just about anything we want on any given day. Also, Mike and I will be celebrating our 10th anniversary next week. We are not doing anything exciting, just relishing in the life we have created for our family.

The little things have cumulatively made this a summer to remember. Max will now go to the park without tantruming if anyone else wants to use the swing. Avery has moved up to the big swing and is even trying to pump her legs. Zoe has even mastered the monkey bars. Most importantly though, is the fact that we can do this  together. We have had to take separate trips with the girls for almost 2 years now. I am so grateful that we are back to the family adventure and we can travel as the pack we aspire to be. Max is even swimming in the kiddie pool in the backyard while the girls are outside with him. This little thing is a huge thing for our family. The social successes Max is acquiring are slowly trickling down to the rest of us and it warms my heart in a way that is inexplicable.

So as the summer of 2010 comes to a close in a few weeks I can look back and see this as a season of monumental change for the Lewis family and I look forward to the months ahead and the many adventures in the works.

Saturday, July 10, 2010

The Silence Amidst the Chaos

Today Mike and Zoe left for the lakes. Zoe is going to visit Grandma Leela for a few days so mommy can train at her new job.  It has been quite some time since I have been alone with Max and Avery for more than a sick day. The absence of one child certainly doesn't slow things down around here, but the silence, or should I say lack of reciprocal communication is a lonely experience. Max can ask for his basic wants and needs and Avery can request a million things throughout the day with a gesture and a push, but there is no give and take with the language. I forget how impaired their communicative skills really are because I am so fine tuned to what they need and so used to the other self stimulatory behavior the engage in on a daily basis. There is a lot of talking going on and lots of noise being made, just none of it conversational or shared (lots of recited Spongebob Squarepants episodes though). Sure, when Max is grunting and laughing with delight and Avery is grinding her teeth with an enormous smile on her face I know things are going well. I also know that when I hear the unpleasant slapping of hands to the face Max is upset or the rip of diaper tape always means Avery is streaking. They both laugh and cry and sometimes for no reason at all. They are also very good at grabbing your hand and taking you to where and/or what they desire. As I always say, "they will get you there."  Most parents complain that they don't get enough peace and quiet. Be careful what you wish for!

If I think this absence of language is lonely for me, I cannot even imagine how they must feel. Everyday this is their communication experience. I know much can be said for non-verbal language, but what about the individual with ASD who is typically unable to read this type of communication in another and respond? I have been mulling over this concept all day. The silence amidst the chaos is an experience I should reflect upon more frequently and appreciate how freely and easily I can participate and communicate in this busy world.  Max and Avery struggle on a daily basis just to attain the basics. Most of the time the novel person is unable to interpret their gestures or non-sensical language. Autism is an adventure that is for sure- an adventure as a parent and it must certainly be one for my sweet angels coping with ASD. 

Wednesday, July 7, 2010

Two Kids and Too Many Decisions

With the recent transition to center based services and too much time commuting to get there it has been challenging to make decisions about how long we will continue. Avery needs to get to school eventually and frankly so does Max. Our system of checks and balances is being seriously pushed to it's limits. I am drowning in choices and there is no definitive way to decide what is best without sacrificing something for everyone in the family.

I love the center and the therapists there, but this insane commute is almost too much and who knows what a harsh Minnesota winter will do. Also, how long can these kids really stay in ABA with a complete absence of other services. Both kids need to find their place in the world without a 1:1 therapist guiding their way, but when do we make this transition and even more importantly- HOW? Financially, I need to be working again and this presents a new dilemma.

It was so much easier when we just had to make decisions for one child on the spectrum.  With two, I feel like my head is going to explode some days. I want to make sure I make the right choice for everyone in the family and now we are at a fork in the road where no matter what we do someone sacrifices something. I guess that is part of being a family. Maybe we have just been lucky in the last 5 years or maybe these choices just become harder as the kids get older.

I should just be grateful that we have so many options and good ones too. I have to trust my motherly instincts and go for it. Nothing is forever and I suppose if we could handle the diagnostic turmoil and heartache, we can handle a bunch of tough choices. This is going to be a year of changes for our family that is for sure!

Tuesday, June 15, 2010

Home schooling

About a year ago I participated in a study regarding home schooling children on the autism spectrum. The individual who was doing the research recently contacted me to let me know her article was picked up. I am thrilled that this topic is getting more attention. There are so many creative ways to teach our children and home schooling has received a "bad rap" in the past mostly because people are ill informed.  Home schooling has been so successful for Max and I am sure I will continue to supplement his therapy services with home schooling for years to come. It is time consuming, but so can endless IEP meetings and a school system that is unable to provide a true, quality education that is individualized for Max's needs. Avery will most likely not need a home school curriculum, but if she does, I am happy to accommodate. Thanks to the researchers who are giving home schooling children with ASD the positive attention and respect it deserves! I will post the article when it is published.