STOP BULLYING FROM TEACHERS TOO (my brave son's story that he asked me to tell!)

October is Anti-Bullying Month. In our house, you would have thought it was in September, and we wish that it had been August. If it was in August, maybe our September wouldn’t have gone so wrong so fast. Let me explain…

I normally write about my son Austin living with severe Autism, as he is the one that I find myself advocating for the most since he struggles with his autism daily. Unfortunately, Adam became my son that had the bigger struggle. On September 3, I was called to pick Adam up at school due to a panic attack. He has Asperger’s Syndrome, which causes him to have anxiety at times in certain situations. He has never had an IEP, and just last year had his first 504 meeting. We had always been able to work through any issues that he had, and he excelled.

On this particular day though, he was unable to cope with the anxiety by using any of the strategies that he had mostly taught himself. You see, a TEACHER who had a copy of my son’s 504, ignored the signs that Adam was stressed and struggling to compose himself. He IGNORED that his 504 said to allow my son room when he closed his eyes and started doing deep breathing to fight back the tears and hyperventilating that would come if he was pushed further at a time when he couldn’t find his words to ask for a break. The TEACHER berated him in front of his entire class! He singled him out, which is completely AGAINST the accommodations listed in his 504, to the point that he was gasping for air and crying. Adam went to his guidance counselor after class, and I was called to pick him up.

Needless to say, THIS Mama Warrior went into full-on battle mode. Meetings were called after a rapid succession of phone calls. All of this happened in the background as many days passed, each one starting with an attempt to take my son to school followed by an extreme panic attack and needing to turn around and go home. It went even so far as Adam having panic attacks upon waking up. We tried everything in our power to calm him, nothing worked, and it was getting worse.

Adam is now on Hospital Homebound instruction, probably for the full school year, but at least until we can get him back into school without his anxiety level being out of control. He will be receiving a Free Appropriate Public Education this way, unfortunately this is the ONLY way for him to do that because of the actions of this person PAID to educate my son. The TEACHER remains in the school, continuing on in his position as he always has, while my son is no longer able to be educated with his typically developing peers. We pay taxes to ensure the education of the children in our community is sound, but NEITHER (representing both ends of the Autism Spectrum) of my sons can be educated by the taxes that I too have paid.

Now, it is time for me to change the system since my son is on his way toward recovering from what happened. This should serve as a message to everyone that is in authority positions around children. It is NEVER ok to continue pushing a child to the point of tears and extreme anxiety, whether there is a diagnosis on file or not. Children are children, labels don’t matter. ZERO TOLERANCE for BULLYING should also apply to adults. If you choose to ignore this and use your power to intimidate or belittle a child, you should be EXPELLED PERMANENTLY. Accountability is key to change.

I invite my legislators, fellow parents, and educators to join me in asking that TEACHERS be held to the same standards regarding bullying as the children that they are leading by example!

LESSONS LEARNED



2011 Rally in Tally against Governor's Cost Freeze

I have been on a journey over the last twelve years that to outsiders may have seemed frantic, tenacious, driven, and even sometimes selfish and maybe even a little crazy. I have grown from a meek, mild, immature young wife and mother into someone that I never thought I would be. It wasn’t planned. I look back and I am unsure how I even got here. I have become a Mama Warrior as I like to call it. It started out fighting for my son, Austin, but became so much more than that. This has become a mission in my life, fighting for children and adults and their families that are living with Autism Spectrum Disorders.

Before I continue, let me clarify what I mean by “FIGHTING FOR”, because I find that this phrase can divide people around me very quickly into factions. DIVISION is our enemy. The only way to WIN is to fight together, and to do that, we need to know for sure what we are FIGHTING FOR. My definition is as follows: doing whatever it takes to help individuals living with autism and their families to reach for the stars, follow their dreams, and be happy and healthy. I fight for those living with autism to be integrated into our society in whatever way THEY CHOOSE. I fight for early intervention to help the little ones to speak and be safe and express their wants and needs. I fight for education, dignity, inclusion, patience, kindness and understanding. I don’t fight for more than others get, and I won’t except less either. I fight for the chance to achieve the best possible outcome for all of us, whatever that may mean.

When I started on my journey in March of 2002, autism affected an estimated 1 in 500. Those numbers have risen to an estimated 1:68 children born in 2002. I believe that we have finally reached the point where we are no longer fighting about if in fact there is an increase. We wasted the last 12 years on that. I don’t hear those arguments much anymore.

I fought from 2008 until I left my position fighting to pass legislation for the Medically Necessary treatment for Autism Spectrum Disorder in December 2012. Thankfully, that fight continues by many people that I am blessed to call my friends. When I was downsized from my position fighting as a National Advocate, I began focusing on the next big fight that was needed. We need an ARMY of trained caregivers to help our children, young adults, and their families as they try to maneuver through a society that is so difficult for them to understand, and that has denied their existence for far too long.

Parents in Action, Inc. is the 501(c)(3) Non-Profit organization that we have formed that is training caregivers and getting them into the homes of Southwest Florida families right now! We are doing it! While I sit on committees on the state level to ACKNOWLEDGE that there is a shortage, we have been able to provide over 7,800 hours of services to families locally without one dime of grant money or assistance from the state of Florida. We have protected families, and made life better for many, but not nearly enough. We work tirelessly to make this happen without ANY ADMINISTRATIVE STAFF, OFFICE, or GOVERNMENT DOLLARS. IT IS WORKING! I know it is on what seems like a small scale, but IT IS WORKING!

This project of ours is a labor of love for all of those we know and have yet to meet who are affected or will be affected by autism. IT HAS TO BE DONE NOW! We can no longer sit and discuss it. We need to move, and we need to move fast.

I finally learned a VALUABLE LESSON on the 4th of July (of all days), that I can work tirelessly to do this along with the people that we are blessed to have working with us, but that’s not enough!  I started this for my love for my son, Austin. My inability to reach out and delegate and engage others almost cost him his greatest advocate, me. I had a heart attack that almost ended my fight. I was BLESSED with a second chance at life and I am not taking it lightly. No matter how hard I drive myself, this has to be a team effort. We need to be ALL IN to make this happen! I am writing this to reach out to my community, and their communities, and their communities to ask for help! These children, young adults and families are RIGHT HERE, RIGHT NOW and they need ALL OF US to work together to help!

RESPITE, DONE RIGHT!

Respite Care is a difficult concept for some people to understand if they have not dealt with it in their immediate families. As defined by the Agency for Persons with Disabilities in Florida, “Respite Care provides short-term supportive care and supervision to an individual when the primary caregiver is unavailable due to a planned temporary absence or unexpected illness.”

It IS NOT, as I have seen written by those not living our lives every day, parents shirking their duties as a parent, or avoiding caring for their kids. I realized recently that before I had a son diagnosed with severe Autism Spectrum Disorder, I probably thought the same way as most people that I see make comments such as these. I had three daughters that followed the “normal course”, and I thought I was a seasoned veteran in the world of parenting. I thought it was all part of being MOM, “Suck it up, Buttercup! That’s how it is and what you signed up for!”

The “normal course” of parenting, (whatever THAT is), goes something like this:

• We bring home our babies and our duties are very intense because of the needs of our infants, and their total dependence on us. Although it seems like forever at the time, in a few months, sleep actually does become better and a routine is established. We do not, in general, have sleepless nights for years. When they are toddlers, we have to have our eyes on them constantly, ready to intervene and teach them that there are parameters to what is safe and what is not. The Terrible Two’s give way to the Threatening Three’s, and we think it will never be easier. Over time, we can extend the space between us and our kids and do other things at the same time, without fear that they will be hurt or get into trouble. Eventually, they amuse themselves for the most part and we wind up begging them to pay attention to us. (This is based on my experience with five children ranging from 24 down to 11 years of age, and Aunt to more than I can count in one sitting without getting exhausted!)

When Austin (now 14) was diagnosed at 2 ½ with Autism, I learned that there were other parents out there who did NOT have this experience. I was disgusted that I had judged people that I had no right to judge, as they were not blessed with the “normal course” as I had been. As an Oncology Nurse, I was quick to explain to caregivers for my Hospice patients about how much they NEEDED to take a break and recharge for their well-being as much as the well-being of their loved ones. The person being cared for also needed a break from their caregiver. I did not see that others needed it just as much! I understand it much more now.

Respite is an incredibly valuable service for caregivers for people with chronic, acute, and life threatening illnesses. Respite benefits the caregiver and the client, when it is done correctly. 

This post is a celebration of it ‘BEING DONE AMAZINGLY WELL!” This is the story of success all around. Benefits are felt by the family, the respite worker, and most especially…a caring, wonderful, brilliant, inquisitive, 16 year old named Brandon!

Brandon’s mom called Parents in Action, Inc. to provide Respite Services for her son. According to Brandon’s mom, “He will try ANYTHING at least once. He goes and goes and goes all day, getting every bit of input he can all day long. He has been this way since he was born!”

She spoke proudly as we talked and even apologized for requesting the respite hours approved for them, because he is such a great kid, it is just hard to keep up with him. One of the first pieces of advice I give to parents of individuals diagnosed with developmental disabilities is that “this is a marathon and not a sprint”. We have to take care of ourselves in order to care effectively for our children. That includes planning for time away from them to allow us to replenish our energy. It also gives our kids a chance to “hang out” and be themselves. They get to do things that they want to without constantly having mom or dad over their shoulder. Sometimes the BEST thing we can do for our kids is to give them a break from us!

After much discussion, this mom agreed to give it a try, although she remained cautious. We set and appointment after I matched one of our Behavior Assistants to Brandon based on their interests, personalities, etc. This is something that we pride ourselves on. All of our Respite Workers are also Behavior Assistants. This ensures that they understand Autism and Behavior before they ever work on a case.

Day one with Victor ended with a text from Mom saying that she felt bad for poor Victor because Brandon kept him hopping. I convinced her that this is exactly what Victor had trained to do, and that I was sure that he loved it! She agreed to continue the visits. (Victor also texted saying that he fell into an incredibly sound sleep the second he got home! He also told me that Brandon was the coolest kid, and he couldn’t wait to get back to work with him again!)

Victor and Brandon spent the Winter break doing everything from baseball, to going to a hockey game, to baking a cake! They became fast friends. Brandon can’t wait for time for Victor to come over! He is even leaning toward dressing a bit like him. It works out nicely that this 16 year old boy has a wonderful mentor/friend in Victor to go hang out. Victor models appropriate behaviors for Brandon in settings outside of his home as well as inside. Brandon has taught Victor to think “outside of the box” for things to do and explore. To be honest, I’m not sure which one of them is having the most fun!

Let’s face it, which is more preferable and inclusive for ANY 16 year old boy: hanging out with your mom or with a guy who likes what you do and has become a friend?

Mom has caught her breath finally. She enjoys watching Victor and Brandon together, and even shared this picture with me of the guys. How can anyone look at their faces and think that this is anything but beneficial to ALL PARTIES CONCERNED?

PARENTS IN ACTION: It's the only way to get things DONE RIGHT! #Autism

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.”

-Margaret Mead

Shortly after my son Austin was diagnosed with autism spectrum disorder in 2002, I came across this quote. I copied it and placed it everywhere to remind me that anything was possible.

About this time, I met another autism mom with a son the same age as Austin, and a baby girl the same age as my other son, Adam. We were incredibly different; our backgrounds, our income, everything. We came together for the one thing we shared, our sons were diagnosed and we were scared and desperate.

That mother, Tammie Baker, reached out to me one day and invited my family to her house for a barbecue by the pool. We never went together anywhere as a family for fear of a meltdown or having people not understand what we were going through.

This was the first invitation we accepted. As they say the rest is history. Our families shared many happy days together, relaxed and being ourselves.

Tammie and I became the self-proclaimed “Lucy and Ethel” of the autism community.  Sometimes we “bit off more than we could chew”.  Sometimes we chased after loopholes, developed some hair-brained schemes, and searched for every connection we thought may help to get what our sons needed. We did everything we could think of to help the autism community.  No matter how big the goal or how unlikely success may have seemed, we always prevailed, as long as we were a team. 

We built successful walks with our group of friends, also in the autism community. We became a support group that happened to put on a walk, and that walk became a family reunion of sorts.

We helped in 2008 to pass Autism Insurance Legislation in Florida. We and our group of friends continued to support each other over the next few years.

When I left my position in December, there was no doubt in our minds about our next step.  Many insurance companies and Medicaid were now paying for behavior services.  It was very frustrating to hear from families that they could not access the services we had all been fighting for due to a lack of providers. 

That was the birth of Parents in Action, Inc. We knew the time had come to step up and set an example of how we can join the existing system and mold it into something to finally help our families.

We ARE a small group of thoughtful, committed individuals.

 It’s time- Let's change the world.

PARENTS IN ACTION, INC.

...Can you hear us NOW?

I wrote this right after the second debate, I still feel the same way, so wanted to share it. We, as a community need to continue to ask the questions! We want answers from those running for the Presidency to those running for our local school districts. 1 in 88 CAN'T WAIT! Not for Federal legislation and funding, State legislation and funding, all the way to Local School Board Races! We have waited long enough for the Epidemic to reach a CRISIS! What EXACTLY is the plan?

Please, for the sake of all of those who are in or entering adulthood, for those going through High School and transition, down to the little ones with Early Steps...WE NEED ANSWERS! ASK THOSE QUESTIONS UNTIL WE GET THEM!

He is only 13, and growing...

 




24 hours ago, I watched the second of three Presidential Debates. I sat there holding my breath, hanging on every word. I just knew that they would say "IT". They had to! The Autism Community has been speaking with a LOUD Voice for two weeks. We have made signs, sent emails, Tweeted, and everything else we could think of. Yet again, they let us down. The candidates spoke of many issues during the debate, this one a town hall forum, where the voters ask the questions.

This should have been our chance to hear what we were asking for, recognition of the disorder that has risen 25% every two years since my son was diagnosed 10 years ago. 1 in 88...1 in 88 children born in the year 2000 were diagnosed with an Autism Spectrum Disorder by their 8th birthday. Austin was born in 1999. He has officially been counted. The thing is, my younger son Adam, born in 2002 has not been. Let's do some quick math. 1 in 88 plus a 25% increase...unless I am wrong (and I don't claim to be a mathematician), the rate for kids born when Adam was born would be 1 in 66.

Anyone getting nervous yet? Mr. President? Governor Romney? Do we have a plan? Have we started to come up with one? I mean no disrespect to either of you, I am asking for assistance from the highest office in our land. You see, in my house the odds are a bit different. My three beautiful girls are what we call neuro-typical, while both of my boys have Autism Spectrum Disorder, so here we are 3 for 5.

Einstein said, "The definition of insanity is doing the same thing over and over and expecting a different result."

I have said this phrase more times than I can count since Autism become a large part of my vocabulary 10 years ago. I use it at the school meetings when I am told that "This is how we have always done it". I have used it when speaking to the bureaucrats in Tallahassee while trying to get Evidence Based treatment for my son, because it is what his DOCTOR and his BEHAVIOR ANALYST agree he needs, yet their answer is "We don't cover that. We don't cover modifications to a home for safety, only accessibility."

Do we wait until children like my son manage to put their heads through a window or wander away because his little brother skinned his knee and I needed to be HIS mommy too?

From where I sit, we are facing a tsunami of individuals on varying levels of the Autism Spectrum who have not received treatment for YEARS. They are entering puberty, becoming bigger than their parents, graduating high school (if they were able to get the right supports), and trying to further their education or make it in the world that STILL WON'T discuss this NATIONAL HEALTH CRISIS IN A DEBATE.

When will it be important enough to those in power to start looking ahead and realize that we are NOT a small minority, but a VAST MAJORITY that have been touched and forever changed by Autism?

I know the "plan" is for Monday to be all about Foreign Policy, President Obama and Governor Romney, but as an incredibly proud American, I ask you to address this HUGE issue that we are fighting all day, every day, right here within our own country!

Done with his forehead about an hour before the debate.

Sirs, my 1 in 88 can't wait! PLEASE, put Autism in the Debates! We must all face this, before the numbers continue to climb.

CRISIS, Florida Style!

In Florida, if you have a child with a developmental disability you fall into one of two categories. The first are those people that are either not on the waiting list because no one ever told them about it, or are on the waiting list, but are receiving absolutely nothing from a list that never moves. If you are among those on the non-moving list, you know your wait will be very long, as the legislature recently moved all individuals under 18 to the end of the list, because, well…they have parents to care for them. Logical? Maybe. A solution to the rising problem, NO WAY!

The other group is composed of people who are “on the waiver”. Some have been there a long time, and some have come on through the process that I am going to describe to you, a “CRISIS TOOL.” Now, to clarify, a “CRISIS TOOL” can also happen for someone already on the waiver as well. It is done any time the individuals needs increase and require a change in their amount of services. The first step is to try to move the little bit of services you have around and cut enough to make room for what you really, REALLY need because of a change. If you refuse to give up all of the luxuries (say what?) like respite or PCA, they will grudgingly schedule a meeting to discuss your “CRISIS.” In our case, the meeting was scheduled for two and a half weeks from when I requested it (March 13, 2012)

So, the meeting day comes (June 6, 2012) and our Consultant and Board Certified Behavior Analyst (BCBA) and I sit down and talk about my son’s needs. We discussed his increased aggression, his increased size, severe concerns from the BCBA regarding his size and the onset of puberty, environmental modifications needed to keep him safe, and various other concerns that were valid for a boy who was almost 13, entering Middle School, Aggressive, brilliant, and making big gains utilizing Applied Behavior Analysis (ABA). We spoke of the increased bruising and head banging, pictures were given to the consultant. Many pages of documentation were shared. The meeting adjourned with a promise to “get right on this”.

A few days later I was told that the new Behavior Support Plan was almost ready and would have to go before the Local Review Committee (LRC) for approval. Knowing we were filing a “CRISIS TOOL,” I was quite surprised to find out it was being presented on May 22, 2012 (Two months after I raised a flag saying we were in CRISIS).

During this time that I spent waiting, I kept busy by helping my friends who were also in various stages of submitting their “CRISIS TOOLS” for their children. These were all parents that I met when Austin was first diagnosed, so we have similar situations because our boys are close in age. Autism is a spectrum disorder and it varies greatly. My friends tend to have some similarities in what they deal with.

CRISIS can mean different things to different people, so with the permission of my friends, I am sharing just a few details for their privacy, while still giving insight.

One mom’s CRISIS includes her son unbuckling his seatbelt as she drives down the highway, in order to climb over the seat to get to his sister to hit her. This was written IN HER Crisis letter including the temporary solution of her daughter holding an umbrella to defend herself. This “CRISIS TOOL” took over 6 months.

Another mom found herself using temporary measures that included a reinforced bedroom door that she had to lock her son behind, and praying that her husband made it home before he got through the door and reached her and her younger son. Her “CRISIS TOOL” was initially filed in February 2012.

I had a defining “CRISIS” moment myself. It was my son’s 13th birthday. My daughter and I were his Unpaid Natural Supports, as we have been since 8-9-12 when I was told we had overspent and had no money left for services for the rest of August. I’ll explain that more a little later. Anyway, we tried to take Austin to McDonalds, one of his favorites, for lunch. He became upset, for some unknown reason and threw his water cup to the ground forcefully. We were center stage at that point. I took Austin by the arm (all 5’5” and 203 lbs of him) and dragged him behind my 5’4”, 150 lb body and got him out the door as fast as I could. My daughter packed up our lunch and muttered apologies and came outside. At that point I had blocked many head bangs to the wall and the concrete, although some did get through, and had been kicked in the leg and punched. She walked out and I told him in my boldest Mommy voice, "GET IN THE CAR!" The date was August 21, 2012. I called every number I had for the Agency for Persons with Disabilities, yet made it nowhere. I cried myself to sleep that night.

Are these all day, everyday occurrences? Absolutely not! However they do occur at a frequent enough of a level as to initiate the parents reaching out and going through the nightmare RED TAPE of the dreaded “CRISIS TOOL”. So, there you have it, examples of what our “CRISIS” can look like.

As promised, Austin’s BCBA created an amazing Behavior Support Plan. He worked extremely hard to be sure to account for all of the days that Austin had school, and when he didn’t. He meticulously planned his schedule in order to maintain EVERYONE’s safety while allowing Austin to do the things he loves the most, like going out in the community, road trips, shopping, and interacting with all of his family. He addressed all the safety issues that we face with Austin like elopement, and self-injurious behaviors, and his sensory needs. He included what he knew as a professional Austin needed to continue to be successful living at home with his family while adjusting to becoming a teenager and all that that entailed. He was incredibly concerned about Austin’s size, and the importance of getting his behavior controlled. He stressed that one person cannot handle Austin when he is melting down. It was all in the draft I was given to read.

He began calling me with questions needing more information, more copies, more proof, more explanations of times for PCA and sleep, etc. It was then that I realized that the District was working on the Behavior Plan to try to get it to pass through. He had to cut hours here and there, and explain everything. Finally, he did the review in front of the LRC (Local Review Committee), it took from May 22 to May 25 to reach an agreement on my son’s Medically Necessary Treatment. By this time, I knew that Austin would not be going back to public school, but would instead be on Hospital/Homebound because his behavior could not safely be managed in a setting that would give him the academics he had been lacking. I knew that the changes made to his plan would make it very difficult to cover all day too. But there was nothing I could do. We moved forward. Everything was finally sent to the State of Florida by the District on June 27, 2012.

Austin’s “CRISIS TOOL” was denied on July 25, 2012. I have requested a hearing, and as of the writing of this entry, do not have a date. I requested a copy of the CRISIS TOOL that was used to reach a decision, and discovered that none of the pictures, graphs, documentation of the extent of behavior my son was exhibiting had been included. It was denied as not Medically Necessary, and because he has had enough Behavior Assistant hours that they should have taught us how to handle his behavior by now. I was LIVID!

Where we are today, is remaining without any services at all. The state agreed to “give Austin the benefit of the doubt” and continue his services through January, but need to see “significant gains”. I have asked them to define significant with no answer. I have had emails ignored, phone calls ignored, and as I said services pulled since August 9, 2012, for being over budget for June and July’s payroll. The strange thing is that when they put together Austin’s “Benefit of the Doubt Budget”, they left June and July at previous funding levels because they were “over and a moot point” per one Agency employee. Because of this “overspend”, they held the employees paychecks until now (when September’s Medicaid deposit goes in) and they will get paid for payroll from June/July and later in the month for August. This means all of September’s money will be paying for the summer, and we are being left as his Unpaid Natural Supports to cover the months that the Agency for Persons with Disabilities refused to acknowledge had happened. The only solution they offered was that possibly it was time that Austin should be "PLACED" for a little bit to help his behavior.

Check out my adorable guy and what he does at the link below, and then you tell me...doesn't he deserve to live at home with his family?

AUSTIN'S CREATIONS

Perhaps we need to hire administrators with better number crunching skills that can understand the crazy programs they expect us to navigate WHILE CARING FOR OUR KIDS!

Expect More…Failure is not an option. We are just getting started!

FLORIDA CRAZINESS 101

I have a story to tell, but first, for the sake of my friends that live outside of Florida, I will explain our system in the shortest way possible. Florida has a Medicaid Waiver for Developmental Disabilities. This waiver includes very strict definitions of the following disorders: autism, cerebral palsy, Down syndrome, intellectual disabilities, Prader-Willi, and spina bifida. This Waiver system is overseen by the Agency for Persons with Disabilities (APD). According to their web site, “the Agency supports Persons with Developmental Disabilities in Living, Learning and Working in their communities”. Remember that phrase, as you will soon realize it is actually kind of funny, but you haven’t heard enough yet.

When our children that qualify for the Waiver, in the case of autism, are diagnosed with Autistic Disorder by a psychiatrist or a psychologist, AND have reached their 3rd birthday, they get to go on “THE LIST”. You won’t hear about getting on “THE LIST” unless you find a group of parents to tell you about “THE LIST”, therefore many children get on “THE LIST” much later. We were lucky…I met the right people who told me to get on “THE LIST” and did when Austin was 3 ½. Silly me, I took him to a neurologist who diagnosed him with Autistic Disorder, oops. I needed to get in with the ONE Psychiatrist in my county to get the diagnosis that they would accept. So, February 13, 2003, we began “WAITING”.

Another lucky break came in May 2007 when “THE LIST” actually moved! (It was the last time it moved at all, other than in cases of CRISIS, which comes next). Austin was now ON THE WAIVER! We were so excited, we called everyone we knew! He was finally going to get help…wait a minute, what? You can’t find a BCBA (Board Certified Behavior Analyst) in my area? No help until a full assessment is done? What? We had one BCBA assigned, he never showed up, he stopped being a provider, then we got another for a few months, but after driving three hours to see Austin for three hours per month, he decided to stop coming here.

I nagged our Support Coordinator, yet another oxymoron here in this case anyway, as she provided me some phone numbers and I attempted to coordinate his care. As time went on, Austin became bigger, and his behaviors became more challenging. He had a certain pitch that he would hit that would cause his little brother Adam to dive underneath my desk to hide from the hits that were to come. It was not a fun time.

Finally, Austin’s little brother brought home plastic armor from the Dollar Store, not to be a knight as I first thought, but so that the hits from his brother wouldn’t hurt so much. THAT was the moment that I picked up the phone and CALLED TALLAHASSEE! Actually, not just Tallahassee, I called the Governor’s office. It was a whirlwind for the next two weeks of BCBA’s coming in and evaluating Austin, paperwork flying, a new Support Coordinator, and finally ABA! A lot of ABA, and you can read about that at the start of my blog series. Sorry for some repetition, but I wanted you to understand where we were, how we got here, and how much crazier this story can get from here.

But, I digress. Our children live 24/7 (yes, government, agencies, leaders, school officials… THEY TRULY DO). He also had a school environment from the time he was three. I fought constantly with the school district, trying to get him help, telling them he was brilliant, he just couldn’t talk. He needed Applied Behavior Analysis, ABA, and he needed it right away. Our school district could not “dictate methodology”, they believed in an “eclectic approach”. I actually fell for that, and then spent years leading up to now, with him on Hospital/Homebound with Behavior Assistants trained in ABA helping to fill his head with the knowledge that he didn’t receive in the first seven years of schooling. He was in 4th grade and moved into a General Education school in a self-contained classroom with a team that could not have been better if I had picked them myself. There are a few stories I wrote before about them that you can refer to.

The culmination of his three years in this amazing place was Austin taking our state exam, the FCAT, start to finish with no modifications, only accommodations. He came home to tell me it was “FUN” and “EASY”. He didn’t even have a single tantrum. He was amazing!



5th Grade graduation, next to his "peers"



The grades for the tests came back. And unfortunately, the grade he was given failing grades for the subject matter. Those grades belong to his district for not teaching him those first seven years! Austin deserved a PERFECT SCORE, because not only did he take it, he did it like he had been doing this his whole life!

So, given the fact that Austin is now out of fifth grade, and had to move on to sixth, he is a much bigger boy with much more severe behaviors mainly due to his side and the dreaded “TEENAGE YEARS”. Homebound seemed to be the only answer to meet his needs with the ABA that has proven to be the key to teaching him, and yet the ability to handle his behavior without disrupting a class or endangering classmates. That catches you up to how we got here…

Next up: THE DEFINITION OF CRISIS, FLORIDA STYLE



And, next to his Principal and Vice-principal!



WHERE HAS THE BOYD FAMILY BEEN?

Austin and the Principal and Vice Principal at Elementary Graduation

Austin and his typical peers side by side graduationg fifth grade

Austin, Mommy, and Beth at Treasure Coast 2012 Walk. My, how he has grown!

Alyssa said "SAY CHEESE", and this is the AUSTIN VERSION! He is such a joker!

I always like to start off with showing off my wonderful son, Austin. It is so hard to believe that he is officially a teenager, after turning 13 yesterday! Time has flown by!

The last time I wrote on here seems like a lifetime ago, and in some ways, I guess it was. Since his successes with inclusion were coming so fast and furious, and his home program kept moving along with him making amazing progress, I was able to take care of some other things in my life, while continuing to advocate for Austin as needed. In April of 2011, Mark and I ended our marriage of 23 years. Life changes, and sometimes we change with it. Enough said.

The kids and I worked very hard, and were blessed with a Habitat for Humanity home through the neighborhood stabilization program. We are incredibly proud of our home that we worked together and received! My daughter, Aubry and I even became construction workers for several weeks, with help from Ms. Magaly and my best friend in the entire world, Tammie Baker. We completed our 300 hours of community service and closed on the house on May 19, 2011.

I have continued working for Autism Speaks in Government Relations, and have been promoted to Manager of Grassroots Development. I have to admit, the last year has been rough as we have settled into our lives with the new circumstances of the kids having two homes, and Mark and I learning to co-parent as a divorced couple. The divorce is yet another reason for my absence from this blog. Some things are better left to be worked out in private.

Austin completed three years at his "MIRACLE PLACEMENT" that we had finally received for him within our school district. He went from working on ABC's and 123's to reading and writing and Math. It took all three years to get to a point that the school allowed him to sit for THE TEST, in our state it is called FCAT. I'm sure you know the one.

Test day came and I was a wreck, but he wasn't. On the first day of testing, I asked him how it was. He shrugged and said "Easy!" and "Fun!". Not exactly what I was expecting...I spoke to Austin's teacher, and with the accommodations in place, Austin took the ENTIRE FCAT in his allotted time. Not only did he take it, he finished it, and never had a SINGLE MELTDOWN! He showed everyone that he absolutely COULD TAKE THE TEST.

We waited, and his scores finally came back. To be honest, they didn't matter to me too much. He had already PASSED with flying colors, as he TOOK THE TEST. His scores showed that he had not made above a 1 on any area. I wasn't truly surprised. He was there to prove he could handle the test, unfortunately, only 3 of his 9 years in school had been focused on preparing him for the test.

The point of this is one that I have said before. We MUST PRESUME INTELLECT! Austin is not intellectually impaired, he has been educationally impaired, but that is about to end! Austin is on Hospital/Home bound placement, doing his 6th grade year at home. He will be working on HIS IEP GOALS, not sharing the time with the other nine children in his class. He will move at his own speed, and FINALLY be given the opportunity to try to catch up with all he has missed over these many years.

There is no reason to cast blame, because blame will never help Austin to reach his full potential at this point. I believe it is safe to say that there is PLENTY of blame to go around.

There, it was hard to finally get you from three years ago to now, but it was necessary in order to understand my next story to tell...It will be called "OPERATION AUSTIN". We will talk soon...

We had a Bad Day...

Well, it happened, we all knew it would eventually, just a matter of when…
Mommy had a MELTDOWN! We’re not talking a little pity party, a few tears, getting snippy with one of the “other world”, you know the one, the one where Autism is that thing that you hear somebody else’s kid has, we are talking a “full blown Mount Vesuvius, someone get a straight jacket for this lady” meltdown! Seriously, I may never be able to go into our local Walmart again.
It all started because I had to run to the store for last minute supplies for my daughter’s 18th birthday (which of course was THAT day). I have been putting off getting new shoes for Austin for a LONG, LONG time. He really hates getting new shoes. He doesn’t understand the whole “try these on” thing. I had our Behavior Assistant and our Respite helper with me (who also happens to be a Behavior Assistant), so if we were going to ever have THE opportunity, this was it.
We prepared him all morning, telling him we were going for new shoes. We used our very best Social Stories, we were ready. We took his Thomas the Tank Engine Sticker books with us so that he would be happy in the car on the way there. We were all feeling very proud of ourselves that we had done everything we could to make this go smooth as silk. We forgot one small detail, just when you think you have it all figured out, Austin just may throw a curve ball.
Miss Nicole took him to the toy aisle (one of his favorite places) while I got the birthday card that I had forgotten to buy. My daughter Alyssa and I were picking out the card, Miss Nicole and Miss Brynn had Austin. Alyssa and I found our card and went to the shoe department. That was when we heard him. I looked down the aisle and there is Austin practically dragging these two amazing girls toward me, screaming bloody murder. Ugh, here we go.
We took him into the shoe aisle (which cleared quickly, other than the gawkers). Nicole sat with Austin, calming him while Brynn, Alyssa and I found every pair of shoes that we thought might fit him. Ok, he was calmer, took off his shoes, and tried the first pair…erg…too small. He yelled while we took them off, got louder when we tried the next one. Hurray, that one fit. We bent to take it off, he started yelling, I turned into the worst Behavior Mom in the world and told Nicole, “Put the other one on him, and he will wear them out! Let’s get out of here!”
He calmed down while she put the other shoe on and really seemed much better. The crowd had dispersed at this point, so I made yet another bad decision, I forgot about a possible after-shock. I told Nicole I would meet her in the front of the store, I just wanted to run to the pharmacy for elastic laces. I know, what was I thinking? I was halfway to the pharmacy when I heard him. There was no mistaking it, round two and three were hitting at the same time. I literally ran back to find them coming around the corner, Austin slamming his head into everything (pillars, Nicole, the floor), and screaming his head off. I threw my purchases into Alyssa and Brynn’s arms. Nicole and I dragged him to the front. Each aisle we passed there was bare minimum of two people standing, staring, and some worse yet making nasty comments. Not fun, but nothing that hasn’t happened many times over the years. I usually use the opportunity to educate people, and I did, for the first few aisles of people, by saying, “He has Autism, we are handling it” as we walked by.
Then came the final straw…I looked straight ahead at the Walmart employee who was standing there just staring at us. No offer of help, no helping me ring up purchases, nothing, Just a whole store staring at a family in the middle of a huge crisis, and not one person stepping forward to help.
I snapped! I screamed at the top of my lungs,”It’s called Autism, it’s an epidemic, and sometimes it SUCKS! Now she is taking him outside with his new shoes, I am going to pay for them, and then we are out of here. ANY QUESTIONS?”
Not the best approach, I absolutely agree, however I am sure that at least a few homes in my town were discussing Autism over the dinner table that night. I guess we did raise some awareness after all.

Miracles DO happen!

I know it has been far too long since I have written anything. I am sorry for that, but very happy to write this and update everyone on Austin's progress. It has had its ups and downs. This picture is of the Dynavox that Austin slammed into his head after about a week of therapy. It is VERY tough in the beginning, but I am SO GLAD we didn't give up!

I have to say it...ABA WORKS!!! As you may recall, we started on July 23 with a full-time ABA program in our home for him. We have three amazing angels (Miss Brynn, Miss Mary, and Miss Nicole) who are working with him. They come after school for four hours a day and eight hours a day on weekends and non-school days.

His plan is overseen by Miss Lauren, an amazing BCBA from Eden Florida. Now, remember, Austin has been in a Center School for Developmentally Disabled children for years. He has gone to school for seven years. I was told his IQ was 53 on paper, I stress ON PAPER! At the end of last year, his testing showed that his academics were at the beginning of first grade. My heart sank hearing that, because this was where 7 years doing it the school districts way had gotten him.

As I talked about in my previous posts, we really changed things for him this year. The ABA program at home has helped tremendously. By the first day of school, Austin had mastered almost all of the goals that we had set in May.

Austin is in the top academic groups in every subject in his class. His behaviors are still a challenge, but he is LOVING the academic challenge that he is getting now.

Austin brings me books, and HE reads them to ME! He won the Math Award for his class. He is proud of showing people his papers from school! He is doing double digit addition and subtraction. I could go on and on, but my point here is that I am talking about a child who was gluing glitter on the letter G, at this time last year!

Our children learn differently. They act differently. They communicate differently. None of this says that they CAN'T LEARN! It is my hope that Austin will pave the way to show exactly what happens when you PRESUME INTELLECT with children. The limitations on their learning may be limitations that are placed on them, not limitations that truly exist.

In passing bills in various states about Autism Insurance Reform, we come against people talking about the Window of Opportunity. Legislators want to set a time, a line in the sand, that says that if our children haven't learned at that point, then they won't. In some states, the law says services end at age 6, 8, or 10. My question is, what if we believed in that? What if we didn't try, because he was almost 10, so what was the point?

Austin has made up at least one year of schooling in less than 3 months. I can't keep up with buying school workbooks for him. For the first time, I am wondering about getting my son ready for the state tests in the future. I never thought I would do that. We still have a long way to go. He still is aggressive and self injurious, frequently. We can breathe now, it has been a very long time since we could.

The moral of this story: Don't necessarily believe everything that the "experts" say your child can accomplish. Believe in your Mommy's intuition, believe in your child, and Miracles just MAY HAPPEN!

Welcome to Austin's Autism Journey

Yesterday, we started a full-time ABA program with my son, Austin. His BCBA, Lauren, came to the house and started training his new Behavior Assistants, Miss Brynn and Miss Nicole. When it came time for Lauren to leave, the girls stayed for an extra two hours. Within five minutes of Lauren walking out the door, Austin started "testing" the girls. He slammed his head into the wall in our hallway. On a whim, I posted it on my Facebook page, to let people see the reality of what happens when ABA is started much later than any Physician would order. Well, I received so many comments and requests to keep people informed regarding how Austin is doing, that the idea for this blog was born. Welcome to our Journey, now let me take you back and give you an abbreviated version of our first seven years living with Autism.

Our 4th child, and first son, Austin was diagnosed with Moderately-severe Autism on May 11, 2002 at 11:29am. Sorry, but the date and exact time are burned into my memory. I was four months pregnant with our fifth child, also a boy. We jumped on this whirlwind after that of specialists, therapists, you name it. They were telling me he needed at least 25 hours per week of Behavior Therapy, and also Speech, Occupational Therapy, etc. It was a crazy time. i started trying to make appointments, and soon discovered that the insurance I had through the Hospital that I worked at (as a Critical Care Nurse) would not cover his therapy BECAUSE he had Autism!

I was shocked! I even asked if he was 95 years old, in a nursing home, with dementia and he had a stroke, would they cover it? I was told, "Of course", I replied, "But my almost 3 year old son doesn't need to talk?" They actually told me that it wasn't rehabilitation because he never had the ability to speak (also not true, as he regressed at 18 months). The clincher, the "kind" woman on the phone also added, "Besides, it's proven that these kids just don't do that well!" BIG MISTAKE...I WAS LIVID and my brain was whirling a mile a minute to find a way to help my son.

I learned that Florida Kidcare would cover his Speech and OT, so I dropped my insurance for 6 months (I also had to drop my hours at work so that I was part time, or I wouldn't qualify for Kidcare). Needless to say, this started a financial drain on our family, but we had to try everything we could for Austin!

I applied for SSI for him, and was told that he wouldn't qualify because we made too much money. I had heard that Medicaid comes with SSI, and falsely heard that Medicaid would pay for Behavior Therapy. My husband and I did the math, and what it came down to was I had a job making about $30,000 a year at that point, and the amount of Therapy Austin needed was about $125,000, so we did what we had to...I quit my job, pulled the baby out of daycare, and got SSI and Medicaid for Austin. That's when I found out, NO, they don't cover Behavior Therapy for Autism, however if one of my other kids started acting up, it would be covered. My blood started to boil, but I am a fighter, so I started fighting!

By this time, Austin was in the school system. GREAT, another fight on my hands! So, I began to learn everything I could about IEP's (Individualized Education Plans), and IDEA (Individuals with Disabilities Education Act).

Fast forward to the present...Austin has never been able to get Behavior Therapy, we just couldn't afford it. He is now almost 10. He is 4'8" and 108 pounds. He is very self-injurious (sometimes punching himself more than 100 times a day), aggressive (mostly toward his little brother, Adam), and can put his head through the wall when angry.

The final straw that got us to the point of having Emergency Intensive ABA services was when Adam, age 7, went to the Dollar Store. He came home with Armor, and I thouoght, how cute, he wants to be a knight. He corrected me, he bought the armor so that it wouldn't hurt when Austin hit him. That was it! I HAD HAD ENOUGH!

I picked up the phone, called the Agency for Person's with Disabilities Director and told him exactly how we were living, and that I was desperate, and his department did NOTHING to help us! The ball started rolling then, and after a flurry of phone calls between Tallahassee, here, and our ABA Provider, we arrived here. He is approved for 4 hours per day of ABA after school, and 8 hours of ABA on every non-school day including weekends!

As I said, we started our journey yesterday. The picture shows where we are right now. Let's hope today is a bit better...