This is MY NIGHTMARE

What happens when your child with autism turns 21?

autism obsession

YOU DON’T OUTGROW AUTISM

My daughter turns 21 in 14 years.  I cannot imagine the fear and anxiety I will feel on her 20th birthday.  She will be pushed off a cliff into nothingness after having 1:1 education and instruction since she was three years’ old.  21 is not a MAGIC age where children with autism transform into perfectly functioning adults.  And there is no accommodation for them.  They are abandoned.  Where will she live?  Where will she work?  What happens when I die?  What if I can’t afford to house her or feed her?  What if she is self-harming or violent?  What if she regresses?

These questions repeat over and over in my head.  It takes everything you have – emotionally, financially, physically – to accommodate the needs of a child with autism.  With an adult, it is nearly impossible because no one has THAT many resources.

I do…

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Law School Autism Mom-Scene One

“The two most important days in your life are the day you are born and the day you find out why.”    – Mark Twain

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When I became a teacher in 1999, my son Ryan had just been diagnosed with autism. I was told that he was severe and there was little hope for any sort of meaningful life for him. I was given the names of some institutions that he might be eligible for and was wished the best of luck. He was 3 years old.

Ryan was a beautiful baby; he slept through the night-and was curious and happy. He was talking and walking and brought joy to everyone around him. At fifteen months though, everything changed. He grew dark circles under his eyes, lost his words and regressed into a sad and angry toddler. After getting a first, then a second opinion, I learned that Ryan was on the critical end of the autism Spectrum and that there were little to no services to assist us. This was 1999, before Autism Speaks and the “Light it Up Blue” campaigns had raised awareness and the profile of autism in the United States. People weren’t talking about autism, and in my own teacher preparation program, I only had one semester of Special Education and was considered “ready” to engage learners with disabilities in my classroom. Autism was one chapter of our required reading.

I became my son’s advocate and even though I was an educator, the depth of emotions that I felt made program meetings difficult. I had studied the laws and knew what my rights were, but I recognized early on that I needed legal support. When you walk into a meeting for your own child, it helps to have someone else there to think for you, as you function on pure vulnerability. At least I did. The attorney that I hired in 1999 is the same attorney that represents my son today. His mission to fight for the rights of people with disabilities has changed the trajectory of our lives.

Professionally, my niche as a teacher was working with students who struggled socially and academically. Looking back, I believe that I was compensating for not being able to help my own child. I couldn’t relate (and still don’t) as well to kids (and adults) who didn’t have obstacles in their lives and fought tirelessly for disenfranchised children and families. I obtained my 6th year degree in Educational Leadership and was eventually selected as the principal of a school in need of a turnaround. In my four years as principal, we turned the school around and I was fortunate to work with an incredible school community. However, I always struggled with the fact that being a school administrator made it difficult for me to advocate for services for students with special needs. When parents don’t know what to ask for (which is most often the case), principals are not permitted to coach them during planning meetings. Often, only families that bring in advocates and attorneys learn what they should be requesting and it is those families who receive the funding from their school district for services that their children need and deserve. It was at one of those meetings that I realized that I had to change my career path. Professionally, I was sitting on the wrong side of the table.

Leaving a secure job that I felt lucky to have was a total leap of faith and I have been in deep reflection for the past 18 months. I have spent this time working with some phenomenal people (The Yale Center for Emotional Intelligence, RULER and the spectacular people who work there will be its own blog entry), traveling to incredible places and have met some of the top names in education. I learned what I didn’t want to do next and spent time considering what I did want to do. It has been a time of tremendous personal growth and balance. Giving myself this time, taking these professional risks, was the smartest decision of my life (well, next to marrying Roger). I have grown personally and professionally and am a better wife, mother, friend, sister, daughter and person.

Anyone who knows me, who really gets me (and there are only a few), knows that I compartmentalize my life. I rarely discuss Ryan and his autism in person; not because I am ashamed but because the moment I do, years of unexpressed emotions come to the surface. Even when I post about him on Facebook, there are always tears. I have yet to sit in a meeting for him where I don’t cry and only really discuss him in depth with my attorney, my husband and children and with Ryan’s dad. I simply could not get through each day if I didn’t suppress the emotions that go along with being a special needs parent. Nobody truly gets it-except other special needs parents. Compartmentalizing is how we survive.

Ryan’s lawyer is a great man-one of the best I have ever known. I owe him so much and over the years he has become a friend and mentor. He was the first person I presented the idea of becoming an attorney to and was the first to give me the confidence to pursue it. I have thought about becoming a lawyer many times over the years, but didn’t really share it with anyone until several months ago. I was always too busy to truly explore it. But over the past year, I have had time to visit law schools, speak with attorneys, sit in on classes. The more I looked into it, the more I talked about it; and the more I talked about it, the more sense it made. I ventured out of my “autism compartment” and reached out to former colleagues, attorneys, close friends, to get different perspectives. Each time I did, it became more and more clear. From clarity came both exuberance and peace. What a privilege it will be to spend my life serving the population that I feel the most passionate about.

OF COURSE I should be representing children and adults with disabilities-who better than someone who has worked at multiple levels of a school district and who is a mother of a child with severe autism? Who else should sit with parents of eighteen year-old children with special needs and help advocate for a meaningful adulthood? Empathy is a powerful emotion, one that families like mine don’t get enough of and I will be able to empathize at the deepest level with my clients.

An autism diagnosis triggers grief in parents. We mourn the death of a “typical” experience raising children. I have spent the past 18 years grieving, because in my mind, accepting autism would signal defeat. Accepting autism would mean that I had given up hope for a miracle. It would mean that I had given up on my son.

However, something changed within me when I made the decision to apply to law school and live my passion for serving children and families with disabilities. For the first time, since the day I was told my child had autism, I felt the acceptance wash over me. For me, acceptance couldn’t come until I could find a reason for it.

But first there was the LSAT. For those who don’t know, the LSAT is the test that anyone applying to law school has to take. It is the SAT of law school. The score on the LSAT is extremely important and there are zillions of books and courses to help you prepare. To be honest, I approached the LSAT with some arrogance. I had gone to graduate school, had my sixth year degree in education leadership. How hard could a standardized test be? VERY HARD! I plan on dedicating an entire blog entry to my experience with the LSAT so I will leave it there for now. Needless to say, I did well enough to be accepted into law school for the fall of 2015!

I know now that my purpose in life is to serve families like mine: to advocate for our most vulnerable citizens and to maximize their potential so they are guided towards their own best futures. My experience as a special needs parent, combined with my extensive work in education, has led me to this place and is what will make me a formidable special education attorney.

So, at 44 years old, with the unwavering support of the wonderful man that I married, I will enter law school. Most students will be half my age and you may read this and think it is crazy to shift gears at this point in my life. It is hard to explain but it feels perfectly peaceful to finally be on the right path and I am delighted to be able to immerse myself full-time into the study of law. I thought it would be fun to document and perhaps offer inspiration to anyone who feels they are not living their own truth. That is what this blog will be. The 44 year-old wife of my soulmate, mother of three, (one with autism), navigating law school and traveling the path to my purpose. You can find me at lawschoolautismmom.wordpress.com and I hope that you will follow me and offer your own insight as we take this journey together.