Autism Advocacy, from the front row

the VT autism posse the front row at statehouse April 2, 2014

thru the years
   Graham was officially diagnosed with Autism (ASD to be exact) by the VT Dept of Health Children with Special Health Needs;  Dr. Contenpasis on July 13, 2004. That was after nearly a year long wait for the appointment that lasted thirty minutes. That was after months of his silent developmental delays being normalized by everyone around him, even me. He is a twin and one is always slower, don't you know....Fast forward,  the letter came in the mail and I dusted off the blurry xerox of the chart listing treatment definitions given to us then. Useless. I didn't want to become fluent in autism, or the system of care, or on what to do next. I thought surely the school would know exactly what to do. So we enrolled him in EEE and trusted the 'professionals' to know what would help him; and at our very first iep meeting, endured the disparaging remarks of the LEA (local educational agent)that we would have to spar with for the next 9 years. I soon realized, schools don't really even know how support typical kids; the truly brilliant kids learn how to teach themselves and like Mario jumping thru hoops to a pot of gold, they learn how to play the typical education game to get to the next level. And I learned how to play the system of care game, jumping thru hoops, knocking on doors, seeking out best practices, networking with other families, building a pot of gold for Graham...

Graham trying on his teacher's glasses

I   What I wish I had known then :(

• I am the expert on my child

• Never settle for crumbs off the table.... solutions need to be creative, use imagination, be innovative...this makes the whole team stretch out of their comfort zones, where true learning begins

• Hold high expectations for Graham and for his support team. IEP Goals and objectives need to be to his benefit! not their budget, work day or limited interest. This is where great stress was evoked, when expectations exceed limits conflict will ensue....Conflict is not BAD, its a game changer!

• Presume competence for Graham! (I am not in denial, I simply do not accept your half-assed professional opinion) (oh, and my son is the best teacher you and I will ever have.... no charge)

• Be the squeaky wheel and pick your battles with the big picture in mind.

II   What an IEP is and is not
     The most important thing to remember about the IEP is that it is a plan for one year only. It will not be carried over to the next year, it is not continuous, it does not prepare for the big picture. Every year, you will sit down at the IEP renewal and you will suffer through goals and objectives that are so isolated from the big picture, adulthood, that you will drown in minutia. It will help with specific goals, like tying shoes, saying hi, giving a hi-5. Every year you will build the wheel all over again, despite a detailed narrative of present levels. The IEP does not address what has been done in the past, what has worked, what has not. It is a document dependant upon quantitative measurements of a qualitative challenge. Delayed development is a qualitative experience, becoming human is a qualitative process. But it is all we have for the first several years.

III   The Multi Year Plan,
     The big picture planning for the transitions through middle school, high school and into adulthood.....and a life worthy of his potential. It is a qualitative initiative and more in line with preparing for life beyond school. I have been asking all along for the long view, but the iep cannot address that, because the system of care which is a 'memorandum of understanding' between dept of education and agency of human services pit the quantitative DOE against the qualitative AHS and the battle begins. The suggested practice is to begin the MYP in summer before 9th grade....but I had been seeking it since 3rd grade, demanding it in 5th grade and still advocating for it in 7th grade. Just 5 short years from exiting school and entering the adult system of care.

IV   What the 'system of care' is and what it is not = cost containment, turf battles, egos, politics...follow the money because that is the bottom line. If there were no laws like FAPE, IDEA, ADA... I am convinced that 'the state' would not rise up to the task of meeting the needs or providing access to human rights for differently abled citizens.
      a)  the 'It' factor ~ along the journey of special education and home support, I have discovered what many in that deep end of the ocean call the 'It Factor'. Some people have It, they connect intuitively with differently-abled persons. They are nimble in evoking successful results for our kids, they have that warm-fuzzy aura that our kids gravitate to and give peak effort for. Most importantly, they believe our children are worth every effort.

       b) Then there are those who want It, attending workshops, clinics, symposiums in speciality topics to strive for a better understanding and implementation of a complex skill set to help our kids achieve. But their own doubts, or rigid minds obstruct their highest goals with our kids.

        c)And then there are those who do not have It. They don't know how to work with our kids, they don't want to, they don't believe that our kids are worth the effort or expense. Sadly, the It-less people seem to be in the positions of power and hold the purse strings that free up resources that would assist in our kids big pictures.

*At the end of the meeting, the day, the year....few if any of these people will risk their relevance, their contract, their pay check, their comfortable professional lives to stand up for our kids when they KNOW they are being misrepresented, under-served or even abused. When you are supported by an exceptional person, thank them graciously at the table and very personally away from the school, where they won't be at risk for reprimand...we must take care of them that have It...xox

      d)  Work-arounds there are ways to work around a dysfunctional system of care, to tweak an obstruction in service to better meet the need. Be clear about what your child's school can do well, i have learned to keep the academics in school and bring much of the 'medical support' home. If your school won't do that, won't give an extended day program, consider getting prescriptions for OT, PT, ABA, SLP via your paediatrician so you can craft a home program. In VT, we advocated for a law to mandate insurance companies to pay for these 'prescribed' autism therapies. You do need to be sure that the providers will take your insurance. In the ACA, it specifically mandates that autism therapies must be included for coverage in a policy. There are so many subtle and not very subtle ways to get what your child needs. Pick your battles. And don't underestimate the power of ADA, the 504 act which provides for access to education. Physical, Cognitive, Emotional....the phone number for your 'local' Civil Liberties Union office is in the front of your phone book! They exist to protect disability rights. Call them if you have a question.
      
  Because my son will not outgrow his autism and I will not live forever.

 V  The exit plan: wills, trusts, family, community...
        a) Trusts~  All along this other-adventure, such perilous journey where no map existed, time took on a new meaning. Despite my rural rooted-ness, my bucolic life in the slow lane; time became urgent. The developmental time frame when Graham could be 're-shaped' for speech acquisition, he could learn a healthier posture, gain self control,  become ready to learn, and learn how to learn. Time became a precious enemy.  Not only did I research and investigate therapies, diets, leisure supports; I had to ponder his future as an autist.  With 6th grade graduation approaching, I recognized the high priority for a Special Needs Trust for Graham, a legal instrument that would protect his interests in his growing, learning and living a life worthy of his potential. That's what his trust actually says. I found out about this tool at a family workshop, through friends who've done this and the network of Vermonters living autism. If you have a loved one with a disability, do it and make sure the attorney drafting it has experience specific to special needs and disability.

     b) Family~    Graham is blessed to be born into a family with two older sisters and his twin brother, on a small horse farm with a very busy house. Things are quiet now and he enjoys feeding and brushing the few horses that are here, as well as the 'hikes' on the back pastures and wood lot. He lives a pretty interesting life here skiing at SMUGGS, on their Special Olympics Team Smuggs, swimming at our wilderness swimming holes and enjoying life on the 'fringe' of his siblings' social worlds.

Eli & Graham walking up the granite lane

    At a recent advocacy event, he visited our statehouse, as he has many times, where he sat patiently through the reading of the proclamation for April to be designated as VT's month of autism awareness, he stayed for reception that afternoon as well. I had an opportunity to share some of these written points; and when I concluded his brother Eli, younger by 3 minutes, siezed the moment to walk Graham up to say something...just a simple 'hi'...he introduced his brother Graham and tried earnestly to prompt a 'hi', which of course Graham would not. It takes a lot of practice for Graham to 'perform'. But the HUGE revelation, the moment that won everyone's hearts was to see how very proud Eli is of his brother and for me to know that Graham has a family, and a community that 'Sees' him. In that, Graham is blessed.


   c) Community  ~ it takes a village, a cherry picked village... We are so very fortunate to live in a small town. I spend tremendous hours creating inclusion for Graham, building a hometown that will always have his back. I am setting aside 4 acres for a soft fruit plantation so he will have his own farm, so he will be a contributing citizen. Ever since he was born, since all of my children were born, I have been crafting a constellation of community where their stars will shine brightly. When Graham went missing in 2010, the whole community turned out to search. When he 'bums around town' everybody knows his name, says 'hi'; many have been coached how to prompt him and wait for his response. At his new school, that was a huge piece of his transition; ensuring inclusion and a community that would 'see' him. Along the way I have learned to advocate, to educate, to gently correct haters and complainers and  jabberers. Graham has opened people's hearts and changed their minds and is tireless in teaching that different isn't less. We don't waste a lot of time on toxic people, just forgive them and move on realizing they are more challenged than Graham in knowing love.
   
   Often people will ask me what I want for Graham, "what do you expect!?"  I answer sometimes calmly, sometimes not:  this mom's expectation for Graham, Eli, Quilla and Zoe is to be sustainable, be resilient, be kind ~ follow your strengths and talents and the rest will be history ~ that is the opening line of his Multi Year Plan...our world needs people who can help it become more loving and less hurtful. Our world needs kids like Graham to open that place in our hearts. My only truly adamant goal across all settings is his self advocacy, a voice of his own; that anyone can understand.

     That's the simple version of my motivation to advocate on Graham's level, at a system level and at a more global level. The real benefit of advocacy, isn't that the system will change dramatically, despite our energetic and sometimes heroic  efforts;  but rather the opportunity to connect with other people living autism and to share what works, what doesn't work, what is disappointing, and what is amazing.

 Nobody else gets it...period.                                                       luv, peace and love ~ ell

the link to our latest field trip to Montpelier https://www.facebook.com/media/set/?set=a.10201426890065443.1073741875.1570732991&type=1&l=95ae5d0b04