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.

 

ENJOY!  

 

Source URL: http://www.autismsupportnetwork.com/news/i-love-autism-80093842

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...

Interesting Article from the Schafer Autism Report

Parents of children with autism: We struggle alone

By MICHAEL E. YOUNG

The Dallas Morning News

Related:

• http://www.dallasnews.com/

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."

AUTISM NUMBERS
- 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

RESOURCES
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: www.cdc.gov/ncbddd/autism/index.html
Autism Society of America: www.autism-society.org/
First Signs: www.firstsigns.org

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. 

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.

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. 

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!

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.

Animals and Autism

I have been reading "Cowboy and Wills-A Love Story" by Monica Holloway. It has quickly become one of my all time favorite reads and has renewed my faith in the power of animals and children with disabilities. We have been wanting to add a furry new addition for some time now, but finding the right fit is challenging. There is a lot of information out there regarding the connection between pets and children on the autism spectrum. I have a friend who has a trained service dog to assist her children, but I am not sure that is what Max and Avery need right now. Also, that is an enormous expense that we cannot take on at this time. 

We found and adopted a 3 year old dog named Reggie. Everything about him seems perfect. My first impression of him reminded me of another dog we had (Amos) who loved the kids. It is amazing how Reggie is not be at all scared when Max is screaming and throwing a tantrum, which can be very loud and shocking even to adults who are familiar with Maxwell and his behaviors. For example, the other day when Max was upset, Reggie waited until he was calm and gently laid his head in his lap. Max's demeanor quickly changed to the happy sweet boy he typifies. The scene was beautiful. It takes a long time for him to get used to most people, but after just one short week, Max knows Reggie is his friend.  As for Avery, she enjoys the typical horseplay all children do with dogs. She kisses and hugs him, but also has already tried to ride him like a horse. Reggie is unconditionally patient and has not barked or snipped at any of the children. It has been about 5 years since we have had a pet and I am so glad we found this fabulous new addition to the Lewis house! Oh yah, he is great on runs with mom as well. YEAH REGGIE!

Kids will be kids

Zoe recently had her first experience with other children teasing Max. A group of neighbor kids were playing in our backyard enjoying this amazing weather and one of the kids made fun of Max's long hair.  Interestingly enough it wasn't the behaviors associated with ASD that were the target. Instead, the child said, "Ha, ha, Max looks like a girl with that long hair!" This is really very innocuous and so typical of children, but Zoe laid into him like the kid punched Max or something. She said, "That's my brother, don't talk about him mean!" She was so mad, but I was so proud. Somewhere in her mind she knows that Max cannot stick up for himself and she has made it her own special mission to be his protector. I don't want her flipping out every time another kid makes fun of Max, but I was beaming with pride that she wasn't going to let anything slide.

We have talked to her about how others react to Max and Avery and she has witnessed plenty on her own. We have explained to her that it is alright to stick up for the kids when others are mean, but not to ever be physical or mean herself. She is a smart child well beyond her years and I am so glad she doesn't even blink before reacting to others. It is that kind of passion she will need in years to come when kids only become more cruel. A few years ago she used to explain to the staring eyes of Target and Cub Foods, "My brother has autism and his brain is broken." Now she just goes in there as a fierce protector. Atta Girl Zoe! Mommy is so very proud of what a big and bold heart you possess.

One Week Down

Well the kids are one week into their new surroundings and the first stages of transition have been successful.  They were smiling when I picked them up each day and that speaks volumes. I am so proud of them! It is the same sticky sweet feeling I had when Zoe hopped on the Kindergarten bus for the first time.  I am still uncertain of what the future will bring, but it is nice to have options and change is always positive. Summer 2010 is going to be a milestone!

Philanthropy

April is over and so is autism awareness month.  I have been thinking a lot about philanthropy and the many non-profits out there that support autism spectrum disorders. In the past, I have not been all that educated about non-profit organizations or how they operate, but I have learned a great deal in the last year and for the most part it saddens me. So many people assume that every walk, run, picnic, or any other event sponsored by a non-profit is meant to raise money that goes directly to the cause.  This is not the case for so many organizations.

Autism Speaks is the one that bothers me the most. They promote themselves like crazy and have the money to do so since the Wright family is part of the higher ups at NBC. Ever wonder why the TODAY show has so many autism stories? There is your reason, which is not a bad thing at all.  The part that is irritating is that they travel the country each year sponsoring these big walks to raise a ton of money that DOES NOT  go back into our local autism community! They take that money back to New York and continue with rampant celebrity endorsements.  On top of that, they did a massive cut back on grants and research funding.  They claim it is due to the poor economy, but every member of their board has a 3 to 4 figure salary and are not lacking in raises either. This really puts a bad taste in my mouth when I know so many people who work hard to raise money for their local walk and their efforts do absolutely nothing for their children. This is just one example...

I realize that all businesses have overhead and that they have costs to cover for any event, but non-profit organizations are not meant to pad their pocketbooks! The very term non-profit explains that!  I guess I hate to see people so blindly put their name on anything autism related. It is in fact not always for a good cause. There is a lot of business involved that is not altruistic in nature. I wish more people looked into local organizations and tried to raise money that will actually help our local autism community.

I am a staunch advocate for autism and am determined to only support events that help my autism community that I am so proud to be a part of! I am running this weekend to aid a local center in raising funds. My kids don't go there, but their program is amazing and the dollars actually go back into it! That is philanthropy at it's best! 

It's Over!

Well we just said a tearful good bye to our last in home therapists and yesterday we had Avery's last day of school!  Max and Avery are not aware of the big changes ahead, but I am certain they know something is going on. I am so proud of how far they have come and what I am sure will be great future success. This has been the wildest of rides, but I would do it again in a heartbeat.

Thank you to all of the hardworking therapists and teachers who have put forth a tremendous effort to help my precious angels.  We are blessed to have had such a great group be part of our team.  Here we go.....

Acceptance

According to the Merriam Webster Dictionary, to accept (in various contexts of course) means to receive willingly; to give approval for; to endure without protest or reaction; to regard as proper, normal, or inevitable; and to recognize as true.   

Interestingly enough, I think I have officially come to a place of acceptance with autism. At least according to this definition.  I may not like most of what autism has to offer my children and acceptance has taken a while to find.  I do willingly accept the challenge on both good days and bad. I approve of the diagnosis. I am never in doubt that my children have autism. I endure the path parenting has taken me, although  I do protest at times.  I am not a saint! I don't know how normal autism is, but who is normal anyway? For us, ASD is our normal and I can certainly accept that!

Siblings and the Spectrum

I read an article this morning regarding the emotional impact having a sibling on the spectrum can create.  There was nothing really extraordinary about the article's contents or sources, it all seemed pretty basic and obvious. Nothing I have not read before.  There are a lot of resources available to aid parents in explaining autism to their neuro-typical children.  I question the validity of these resources as much as I do any parenting book and magazine. I am not sure these kind of "how-to" books really help at all. You cannot tell people how to parent by writing a book, only experience can dictate that path as far as I am concerned. In terms of autism, how can any read encapsulate all of the emotional maturity needed by a sibling of a child with any disability. I know parenting books are meant to be used as guides, but I have never been a  big fan.

I worry as much about Zoe's future as I do Max and Avery's. The fact that it is more likely my children with autism will outlive me is staggering at times. I worry about the quality of therapists and caregivers when I am right here at home, the thought of who will be their primary caregiver after I am gone takes my breath away EVERY time it crosses my mind.  Not only do I worry about who will properly care for Max and Avery, but the burden this puts on Zoe. She will have a healthy responsibility on her hands and I feel bad for putting that on her as the only sibling. There isn't even anyone to share in the duties. Of course I do not know what the future brings and where Max and Avery will work and grow up, but one things is for sure they will need to be looked over directly or indirectly and after I take my last breath I guess Zoe gets to take over. Scary and sad at times.

On the other hand, all of the stress and sacrifice that Zoe endures will also make her a more caring and compassionate individual. She has already had to deal with more in her 7 years than many children will ever have to handle.  She struggles with why her brother and sister have autism and how that changes her world, but overall her heart is big and her smile wide. She gets mad and angry at what she has to give up, but she will be the first to tell you why her brother cannot handle loud noise and bright lights or why her sister sometimes says the same thing over and over. You certainly cannot learn those life lessons in Parents magazine or any book that is for sure!

The End is Bittersweet

The primary thing on my mind these days is the big move of services to the new MAC center. With all of the change and planning taking place I am now realizing the bittersweet nature of this farewell.  I will miss the day to day contact with all the staff, snack time, and seeing how proud and excited the kids get when they finally "get it" during programming. I think I forgot how lucky I have been to be so greatly involved in each aspect of their life every single day. 

I will miss so many of the therapists that have become a part of our family in a way. The company has specific rules in place to try and avoid boundary issues, but it is hard to not become attached. One member of the team has been with us since the beginning and I cannot imagine going a day without connecting with her. Others have been with us for years and even work with both kiddos. Of course not all therapists have made such an impact, but the vast majority have been amazing. They come to work and try so very hard to get the most from Max and Avery and do so well even on the "off" days. I am so blessed to have had so many wonderful, compassionate and dedicated individuals come through our home. The smiles on the kids' faces speak volumes when it is time to work. I am sure the ones that will be with us in the future are going to be equally great, but the reality is that they have some seriously big shoes to fill. The current staff is great! In fact it is the best group we have ever had in place. There isn't one dud in the bunch! :) I will miss them all dearly and if Max and Avery cold put their feelings into words I am sure they would concur. This is truly a bittersweet goodbye!

Back to work?

With Max and Avery going to the center soon and Zoe heading into 2nd grade next year the option of my working again has finally come. I am excited about this opportunity as my professional aspirations have always been high. I have not worked full time since I was pregnant with Avery and even that was short lived. I love every minute of the time I have spent home with my angels and wouldn't change a thing. You only get one chance to watch your kids grow up and although it was out of necessity that I stay home full time, it has been the best decision. I always figured I would work part time while the kids are small and go back to work when they are ready.  Autism and the journey we have embarked on changed those plans drastically.

I have been looking into part time jobs and full time jobs. It seems scary to enter the job world again and I know I would not be picking up where I left off.  I left a very rewarding profession and although I didn't get enough time to truly be established (in my eyes), it made a big impact on my life. The surreal part for me is that as a special education teacher, my work so closely resembles my life. That makes for an entire new set of challenges, but on the other hand, I have more to offer. I look forward to the future, but will cherish the time spent home. Who knows maybe I will be busier than I think and I will continue to run this ship from home. We shall see...

This summer though,  I am spending quality time with my sweet Zoe as she has taken the back seat too many times with the crazy home life we took on for the past three years. I look forward to a little freedom in our schedule and lots of fun times!

Why Can't We All Play Nice?

I am so blessed to live in an area where the options for autism therapies and services are almost endless. One would assume it is easy to piece together services for their children in an ala carte manner specific to their needs and level of ASD.  People move to MN to receive the "cadillac" level of care we have access to at the school, medical and county arenas. So my question remains... Why can't we all play nice?

It is one of my greatest frustrations that the providers cannot get it together enough to truly collaborate in a professional manner that is in the best interest of the child. I love our ABA provider, but their lack of flexibility when working with the school district or other outside direct therapies like Speech and OT is ridiculous. Why would anyone put all of their eggs in one basket with so many services available? ASD is a spectrum disorder, which by my logic means that there is going to be a spectrum of therapies and techniques needed to help our children learn and grow.

Parents need to be involved and advocate for their children, but this becomes more challenging when you have to battle and implore these individuals to work together. I want each of these entities to think what they are offering is the best of the best and I want teachers and therapist to be uber passionate about their jobs, but when do these people realize that I am the ONLY one who is an expert on my child and it is up to me to decide what is best for them. After all... I am mayor of this town!

I am having such a hard time getting our ABA provider to work with our school. I feel like I have to make a choice and am backed into a corner doing so. It is really frustrating, even for me who is a very strong advocate for my children. I have never been afraid to speak up on my kids' behalf, but even I am exhausted with this situation. I am eager to have the kids start the center and move on, but I want to hang on to the school for Avery and I will have to fight tooth and nail to make that work. For Max, school is not an option so it is a no-brainer decision, but for Avery it is not so clear. I am gonna stick to my guns though and do my best. I just don't understand why I can't have a little of both. If I am willing to do the work so should they. Ah yes, the battle continues. Stay tuned!

Big Changes Ahead...

Well in about a month the kids start their center based ABA services. I am so excited to see them move on to the next step and continue their journey. It will be so good for both Max and Avery in so many ways.  At this point I am thinking they will need about 2 years of therapy at the center. This is a really big step for our whole family. Big changes ahead....

I get my house back to "normal" and my kids get to venture off into the next phase of their education and therapy. We are so blessed in so many ways. I am scared the center may not be a good fit or not a good enough fit for the sacrifices we are making to accommodate their schedule. I fear that it may be good for one child and not the other too. Thinking back though, I have been scared every step of the way so far. First, after Max's initial diagnosis, I was scared to up and move and leave family while I was 7 mos pregnant. Then I was nervous about hauling a newborn and 2 1/2 y/o around to therapy appointments and school with Max. I was also afraid when we were about to open our home and lives to daily therapy.  When we learned Avery also had autism, I panicked about having to go through this stress for TWO kids!  Suffice it to say, this whole adventure has me filled with trepidation with each new step that comes along. I should remember though, we made it through everything so far, so this new phase will work too. Things really do have a way of always working out! Who knows, maybe I will even regain my career again at some point. The options are endless.

April 2nd- WORLD AUTISM AWARENESS DAY

Today is World Autism Awareness Day. In honor of my beautiful darlings who live with autism and work so hard to learn each day, we will be enjoying their spirit, spending the evening as a family and to steal a quote from one of my favorite books, "The Miracle Run," we are going to be "keeping it autistic!"

Have a wonderful day and wear blue in honor of the 1 in 91 children diagnosed with ASD.

What does autism awareness really mean?

April is Autism Awareness Month with the 2nd being World Autism Awareness Day. There is a lot of attention and advocacy for a great cause this time of year and I like to reflect on what this awareness means to me. In any given year I certainly spend more than a month being aware of autism that is for sure! 

The prevalence of autism is staggering and there is always a new book, story or controversy related to the topic. All this "buzz" is good as it brings attention to autism spectrum disorders, which certainly deserves more research and effort regarding it's cause and cure. I definitely do not feel alone in our challenge to help our children live the best life possible.  With so many children being diagnosed, I am blessed to have this connection with so many other parents and caregivers. It does make things easier, especially on those really tough days.

These days I prefer to  read stories about families who have come into what I consider a new state of awareness.  I define this as a place where acceptance and a fighting spirit are more balanced than things are in the beginning when you are searching for therapies and grieving autism.  I love reading about families who have been working through autism for 15 or 20 years and are now watching their children move onto the next stages in life. I find solace in their patience and unconditional love. I will always be well read on all topics autism related, but as I have found a place of peace in this diagnosis, I would rather revel in the simple things my children learn and accomplish each day. I will always be an advocate for the autism community and April holds a special place in my heart. Autism awareness means different things for different people, but for us it encompasses what autism has brought to our lives, how we have changed and what we have to focus on for the future.  After all, we will spend much more time with our children as adults and that time will sneak up on us unless we are paying attention.

The positive side of things...

Life has presented us all with a plethora of challenges and autism certainly has made things more difficult, but to say it is all bad wouldn't be true either.  First and foremost, my children are healthy!  Thank God for that, things could be so much worse.                                                                                             

One of my favorite things about Max is his artwork, It is so amazing and it appears to be a way he communicates and releases his anxiety. For example, back in December he had some pretty major dental surgery and for the next week, he kept drawing pictures of people and animals with very large teeth and a lot of them too! It was really very sweet and telling. His interest in art started early on when he would ask us to draw things. Of course Mike is a much better artist than I, which is a good thing since Max used to ask us to draw Manatee's and other ocean life. Finally, as his fine motor skills developed more he took over and has proven to be the artist in the family! Many ask, is this his "rainman" thing, and after the initial annoyance wears off and I explain that his art isn't detailed in a way that appears savant like, it is just very creative and it is his absolute favorite pass time. He loves the magna doodle, white board and markers, crayons, basically any medium we allow him to have. Of course the time he swiped a black sharpie upstairs and drew Blue's Clues paw prints all over his bed and walls was not my favorite, but that is why the Magic Eraser was invented, right?  Sometimes he draws the same thing over and over. Sometimes a red circle is just a red circle, other times, it is a jelly bean or rocket ship.  He also uses Play-doh and clay to make his favorite letter or number of the day, or sometimes it is an animal.  It is so terrific and it makes me smile each and every time! Art is a way to encourage Max's communication and keep him engaged in our world, which is crucial for his day to day successes. I am so proud he has found something he enjoys.

In addition, many 8 year old boys are over their moms kissing and hugging them all the time, not my sweet Max, he can't get enough of me. Sometimes this attachment can be challenging, but I am grateful. I am also sometimes glad I don't have to deal with the raucous nature of young boys. All the Star Wars, wrestling, and other rambunctious play is overwhelming to me.  I am a lover, not a fighter and I am glad Max is too.  

As for Avery, it is her desire to imitate every word even though it is a struggle that warms my heart. She only has about 10 words she uses independently, but she will try anything. So of course Zoe has taught her some funny stuff, like "stinky butt" when her diaper is full. I know lame humor, right?  Her play skills are also delightful. So often children on the spectrum don't play with toys, but Avery feeds her dolls, drives her cars and has had a million tea parties. Thank goodness she is patient because Zoe dresses her up in princess costumes on a regular basis as well. She makes a really cute Cinderella! Avery is great with puzzles too. Of course she does some of the perseverative ASD things like stacking buckets of toys or lining up cars, but for the most part, her play skills are AWESOME!  I am so glad she lets Zoe play with her, that is what sisters are supposed to do and Max is not as tolerant. This is so important for our family dynamic.  Avery is also so curious. She will climb and jump on anything just to see if she can get higher.  At the park she wants to play on all of the equipment, even the ones she is too little for. This year she is ready for a bike with training wheels and she hopped on the first time without hesitation. Of course she needs some guidance to get herself going, but she is willing to try. This fearlessness takes my breath away at times, but that kind of tenacity will help her go far in life. I wish I tackled life the same way. I hope she never grows out of it. I will probably change my tune though the first time she breaks her arm though!

My dear Zoe has the kindest of hearts and she deserves a post all her own to address her soulful nature.  She is mature beyond her years in so many ways. Autism has robbed her of a normal childhood, but she will grow into an adult with the patience and kindness many will never acquire. 

Autism can be unbearable at times, but even on the worst days all 3 of my children are so happy. They are smiling more often than not and giggling all the time. I guess we must be doing something right if everyone is so happy.  I guess sometimes the silver lining is hard to find, but if you look hard enough it will always be there.

Evaluations

So today I met to go over Avery's recent annual evaluation results. Not exactly a new experience as I am pretty seasoned in this area. The funny thing though is that it never gets easier to see how "behind" your child is compared to their same aged peers. Yes, I know, they are only numbers and it is only a snapshot in time of what a child can really do...blah, blah, blah, I have spewed this same speech to many families throughout my career (talk about life coming full circle).  Of course it is true, those tests are nothing more than a gauge to mark progress and are truly not representative of what my she can actually do, but it is hard to see it on paper.  I just try to focus on the progress made regardless of how it compares to others and on that note GO AVERY! You are doing amazing!  

Home based services

March 4th marked 3 years of full time, home based ABA therapy. WOW!!! When we first signed up for this we thought, maybe a year or two, but that is all we can handle.It is only a season, right? It is a crazy life we lead. Six days a week, 52 weeks a year, we have anywhere from 2-4 additional adults in our home providing wonderful behavioral therapy services. It requires me to stay home since a parent or other responsible adult must be present while they are working in your home. These hardworking therapists see absolutely EVERYTHING. Good days, bad days, no coffee mornings, dirty dishes, and just about everything else you can think of as it relates to my family's daily life. It can be very invasive at times, but worth every minute when I see how my children are learning. It is a surrender of our privacy and natural home life, but I look at it like I temporarily turned my home into a clinic. I have a trampoline, mats, and cuddle swing in my living room- how's that for feng shui!

Our three years will be over soon as my Max and Avery will move onto to center based ABA services through the same company. I am excited to have my house back and proud that my children are ready for the next step. I understand why some people would not even consider it an option to do home based ABA.  It requires a massive sacrifice on behalf of parents, which for us included my career, privacy and serious down sizing! At the end of the day though, this has been more worth it than I could have ever dreamed! Thank you to all of the hard working therapists who put forth their best efforts to help my angels. We are looking forward to the next stage of therapy!

To be sad or not to be sad, that is the question.

All children are challenging and parenthood is a battle sometimes! When it comes to autism and the impact it has on families many reply, "are you sad?" or "how terrible for you!" Yep, I have been sad and yep, it can be more than terrible at times. I don't come from a place of "I wouldn't change a thing," because I think people who say that are in some ways lying to themselves. Of course I love and adore my children for a million different reasons regardless of disability, but to say I am happy they have autism or that I wouldn't change it is a lie, but not for my benefit. Of course I would prefer if my 8 year old was toilet trained or that my 4 year old could say more than 10 words independently. Obviously, I wish Zoe could talk to her siblings and they could actually talk back and engage with her like other children do, but this isn't going to happen. Instead, it is what it is and I am gonna make the best of it each and every day. I do wish they didn't have autism, but sadness and tears only last a moment. The pride and joy I share with them everyday is what keeps me going. I feel as though I appreciate each milestone a little more and am eager to get them to the next level.

Autism is hardly a dream come true, but it is also NOT a death sentence. My children are healthy and most importantly HAPPY! I am blessed to be their mother and truly proud! We don't need pity, just support, patience and compassion, but really, don't we all?

The Public's Perceptions

Last week during a typical Target outing with Max and Avery (Zoe was at school) I had the most pleasant reception from the lady behind us in the checkout line. Of course Max was playing with the tags by the candy and Avery was trying to crawl out of the cart. Max was very loudly going to town with his verbal scripting and stimulation. He was excited and happy and this always attracts attention. He was running away from me (not escaping) doing his excited "dance" and I had to keep running to get him as he rarely answers to his name and has no awareness of safety. During this time I also needed to empty my cart, pay, and get going. Avery was not happy and only wanted the shiny bag of Starkist Tuna, but guess what you have to ring it through first! She does not understand this concept. :)

Okay so chaos at the checkout is not big deal, it happens to ALL parents, but it is the staring and mean comments that usually trigger my response because my children cannot help it that a simple trip to the store can be very stimulating for them. This day was different. As I was trying to get through the line, I explained to the lady behind me "My children have autism and I am sorry it is taking me so long, this is always crazy!" She said, "No problem, I am so glad that you are doing this." I am not sure what that meant exactly, but it warmed my heart at the compassion of others regardless of her intent. Her eyes and smile were warm and not full of pity, which for the record is equally annoying as rude stares! It definitely took an extra 15 minutes to finish up and she was patient and kind. If only everyone would respond that way.

I have had many trips where it doesn't end so well, but this trip was great. Sometimes the simplest exchanges mean so much. This story is important to share, because it was special to me and my children. We all have our challenges and it takes patience to appreciate the public's perceptions both good and bad! I hate the phrase, "It takes a village to raise a child," but I do think it takes a village to show compassion sometimes in today's world!

The message I want to send here is that people really are good at heart, at least that is what I believe.

It's only a season...

My father has always told me, "It's only a season" when times are tough. It has always served as a nice reminder that even though life can be excruciating at times, there is always an end in sight. Although I have not always wanted to hear it, he is right. It is only a season and things change and brighten for the better. In the case of autism- he is dead wrong! Autism does not last a season, it lasts a lifetime and although it isn't a progressive disease it is a very daunting task to think that ASD is the forefront of our lives and will be forever. This is not necessarily the worst thing that ever happened, but this is the one time I cannot take that advice and run with it knowing things will get better.

Of course things have dramatically improved over the years, but autism is a lifestyle and not one you choose. I see the future as bright and full of surprises, but to say it is only a season truly doesn't apply.

Diagnosis

We recently recognized the 4 year anniversary of receiving our son's initial diagnosis. Time really flies and we are at such a different place now. We went from PDD-NOS and thoughts of "at least he will be high functioning right?" to a realization that he is in fact profoundly autistic and has challenges we never thought would be a part of his life. Denial is an amazing coping mechanism, one that I realize now I desperately needed to get through the initial stages of grieving and stress.

It seems odd to tell a story of grief and stress when now I am so blessed to have a wonderful son with so many amazing skills and strengths that outshine his disability as a whole. Sure he still has a tall mountain to climb, but we have already come so far, I am so proud to be Max's mom.

As for our daughter, we are around 2 years into diagnosis. I remember thinking while pregnant with her- whew, it is a girl, the odds of her also having autism are minimal and how could we actually end up with two kids on the spectrum, right? The odds were not in our favor, but it is what it is! We have already been through the stages of loss in a similar manner we did with Max, but have come to the same place. The future is full of uncertainty, but she is a beautiful girl who lights up our lives daily. I cannot wait to see where Avery and her grand sense of curiosity takes us all! She is an angel.

In the middle of all of this chaos is my sweet, precocious Zoe. Essentially she is the big sister to both and that brings on a childhood we never anticipated for her. We work very hard to find the balance between "normal" (god, I hate that word) and "keeping things autistic." She has had to grow up and sacrifice in ways most children don't, but she has the heart and compassion of a well seasoned adult. She is so tender and caring with her brother and sister and it makes my heart so full to think about her loving soul.

Then there is my husband, Mike... he has adapted and made things work and been at my side the entire time... thank you! Autism is hard for all parents, but mothers get most of the TLC when father's are equally deserving. He has shared in all of the joy and sorrow and this needs to be recognized.

As I read this back it sounds kind of sad, but please know that is not how I feel. Looking back on the "diagnosis years" are bittersweet, but I do believe God only gives you what you can handle. I am glad he has such high expectations of me.

Thank you and good night!

After 4+ years of enjoying our adventure, it is time to chronicle and share what we have learned and experienced! I have three of the most beautiful and delightful children and two of them are living with autism. This diagnosis has changed our lives in every way imaginable. It is time to broaden our journey and share our experience. I hope to gain insight and perspective from other people's stories and expand our inner circle to include more who are living this adventure! For our family and friends who already love us thank you so very much from the bottom of our hearts. Your unconditional love and support has helped us all find peace and hope in this diagnosis.