Tuesday, October 7, 2014
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!
Wednesday, August 6, 2014
|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!
Thursday, January 16, 2014
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?
Wednesday, July 24, 2013
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.”
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.
Friday, October 26, 2012
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!
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...|
Monday, September 10, 2012
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?
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!
Tuesday, August 28, 2012
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.
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"|
Next up: THE DEFINITION OF CRISIS, FLORIDA STYLE
|And, next to his Principal and Vice-principal!|