Friday, May 25, 2018

Drowning -A Guest Post

By Carrie...

My son was in elementary school when I became a reader and follower of Karen’s blog. When our regional community was rocked 2 months ago by the drowning of a 14-year-old with Autism Spectrum Disorder after he eloped from his city school, I asked Karen about doing a guest blog. She agreed. It’s been just over 2 months since I first mentioned it. At 4 a.m. this morning the blog hit me upside the head.

Carrie's son Tom
I am a single mom to a 16-year-old young man with Autism Spectrum Disorder. We live in a rural community in the heart of New York’s Finger Lakes (and WINE) Region. I had the first inkling of an autism diagnosis when my son was 2 years, 9 months. He suddenly lost the ability to speak and had extreme, physically violent meltdowns with self-injury; sometimes requiring up to 90 minutes of physical restraint by me.  I had modified restraint training I had received through an employer. With the DSM-IV he was diagnosed with PDD-NOS at age 5/6 and had a whole host of rule-out diagnoses. We saw a local developmental pediatrician for many of his early years.

My son started in an intensive Universal Pre K program at 3 years, 1.5 months run by one of our area’s best special needs programs. He had 1:1 aides, occupational therapy, music therapy, speech therapy and more. When he started elementary school at our home district things changed, some for the better and some for the worse. His educational team tried, for the most part, to do what was in his best interests within the constraints of our school district’s abilities. And he even qualified as disabled under NYS’s DDSO (Developmental Disabilities Service Organization.) In 2011 due to regulation changes through DDSO he no longer qualified as disabled.

A couple years later his developmental pediatrician announced her upcoming retirement to us. That led me to seek out a more concrete evaluation from a world-renowned regional autism center/clinic. We waited over 6 months for the appointment/evaluation date, which was 9 months after the local developmental pediatrician made the referral. After spending only 90 minutes with my son and I the specialist, (at this world-renowned autism clinic,) deemed that he had “outgrown the autism” and was most definitely ADHD inattentive type. My heart shattered, to put it mildly. We only had three visits with this specialist, and she tore me down each and every time we met. At several points during our appointments, she would tell me that I was failing him as a parent when I would question her or her recommendations. That immediately instilled a distrust in developmental disability professionals from that point forward. It was 2014, and it took me 3 full years before I would seek out another professional for my son.

In 3 years’ time, he spiraled. Our April 2017 Autism Awareness Month was eye-opening. He punched holes in a large portion of the walls of his room.  He physically broke our outdoor, make-shift clothesline by snapping a 2x4 board in 2 different places just with his shear strength.  And finally, his 3rd quarter school grades came home with 2 incompletes and outright failing one class. I started a renewed search seeking out a counseling professional for my son.

Fast forward nearly a year, in March 2018, to the drowning of a 14-year-old with ASD in the Genesee River in Rochester, NY, a mere 60 miles from where we live. His physical drowning has been enacting some changes in the Rochester, NY area. But where’s the help for those kids and parents who are metaphorically drowning in the rural areas, (and cities and suburbs)?!?

In the past year, we finally have 2 professionals, (a Licensed MSW, and an independent Licensed Clinical Psychologist,) agreeing that my son has Autism Spectrum Disorder as specified in the DSM-V. The school still says he’s a “student with Autism” in his Individual Education Plan, and this has never changed since his first IEP meeting at 3 years old. Yet with all that documentation, and documentation going back to his very first evaluations for services in 2003 and 2004 it’s not enough in the eyes of the former NYS DDSO, (now NYS OPWDD, Office for People with Developmental Disabilities.)

With the help of our local Arc, I recently re-applied to qualify him for services through that state-run office. Despite about 100 pages of documentation showing a continued need for services, the office said he did not show enough of a qualifying diagnosis for services, and his IQ is 4 points too high to automatically qualify under IQ requirements. And because he didn’t qualify for OPWDD services, he doesn’t qualify for Arc services. And if he can’t qualify for OPWDD there’s no way he’ll qualify for Social Security Disability assistance.

After receiving the letter disqualifying him our county had a community input forum in response to several recent teen suicides, overdoses, and other community concerns. My full-time employment with a community based social service agency meant I was well known by one of the facilitators. I had just received the denial, so I opened my mouth to the forum and asked where we were supposed to turn to next for help. That put me in touch with a youth services advocate through our county health and mental health dept. We had a referral put in with another local agency who provides HARP (Health and Recovery Plan) services. However, because my son’s only diagnosis is ASD, he won’t qualify for services in that program without a mental health or addiction diagnosis. We have 8 days to find a medical professional who will agree with a comorbidity of a mental health disorder, or get my son hooked on meth or heroin, or we have to start that process from scratch again too. Meanwhile, I have 3 more days to file my request for appeal to OPWDD and I have lost that paperwork.

But the issues don’t stop there. My son’s 35-week report from school arrived in the mail yesterday. He’s currently failing 3 out of his 4 core academic subjects with grades in the 40’s and 50’s. He is also failing one of his extra academic classes and on the verge of failing a 2nd for not turning in assignments and research projects. These 2 classes are areas he excels at and loves. He also owes $80 to the school for technology and reading items that he never returned.

He struggles with life skills/activities of daily living. He rarely brushes his teeth without adult prompting.  He washes his body only half the time without adult prompting. He’s nearly burnt down our home by being so engrossed in a TV show that he cooked pizza-snackers in the microwave for 15 minutes and didn’t notice the burning smell. The smell woke me from a dead sleep, and he then stood in the middle of our kitchen with a plate that was still on fire IN HIS HANDS.

His inability to know follow-up on his chores caused his air-conditioner unit to flood our living room, requiring a whole flooring remodel, (which I had to take on myself because I couldn’t afford to pay someone else to do it on my meager earnings). It and ruined the box spring of my brand-new bed. 18 months later I’m still sleeping in the same bed and box spring.

He can’t get a summer job because he might have to go to summer school, and I’m not sure he has the skill set to keep a job without an intensive job coach. He has developed skills from volunteering in our church’s media room, volunteering with the free food truck food distribution, volunteering at our local thrift shop, and being a new member of our local fire department. However, he can’t process how to transfer those skills to an employment-based environment. He doesn’t know how to budget or understand money, something I have tried to teach him for years. He doesn’t want to drive; not because he doesn’t know how, (we live in farm country remember) but because the other drivers on the road scare him, and he doesn’t understand the NYS DMV driver’s manual enough to pass the written exam to get his permit.

He still has to be told when to do laundry, because 3 weeks of clothes piling up and no clean jeans or underwear didn’t trigger any response in him to do laundry. Every Monday he has to be reminded that Tuesday is garbage day and he needs to bag up the garbage and clean the cat’s litter box. This isn’t typical teenage behavior as our family acquaintances and community friends try to tell me because it has never gotten better. It’s been this way for YEARS!!! This is just the tip of the iceberg if you were to live our life.

I have begged people publicly for help, I’ve begged Facebook friends for in-person help. I have gone so far as to ask Amish members of our community if they will offer him an apprenticeship of sorts, (talks are still ongoing there.) I’ve asked the school for help with a life-skills class. Next year they are finally offering a cooking class, which my son is currently signed up for.

My son is regarded by many as high-functioning on the autism spectrum because of the skills and abilities he has, but we are metaphorically drowning! I'm wondering, would it take my son physically drowning in Cayuga or Seneca Lake before someone or some agency says, “We should be doing more to help to help families in this situation,”?!?

We are very community involved. My son is a 4th generation firefighter with the same fire department. I have spent over 20 years volunteering between the local fire department and EMS.  I regularly volunteer my time and photography talents to the community and school programs. My son volunteers in many facets of our local church from the media room, to food distribution, to clothing distribution, and will hopefully be attending an out of state mission trip to Boston in July. He plays 2 varsity sports and is a starter for one. He competes in NYSSMA music solo festivals each year and is in honors band and chorus at school.

We give of our time and talents to help those around us in need nearly every day.

Why can’t we qualify for any help?!?

Why are we metaphorically drowning?!?

I don’t want your thoughts and prayers or sympathy.  I want some action, resources, and services! My son has long terms goals. He wants to work in law enforcement. He wants to live on his own, realizing it may only be with assistance. He wants to be a contributing member of society. None of that will happen without help and services in OUR OWN COMMUNITY!!!


Carrie is a single mom of a 16- year-old young man with autism, living in a rural area of Rochester, New York. She is trying to raise her son to the best of her ability. This is a story of the frustrations getting the right kind of community support services for him. Her story is the story of so many parents in the U.S. and all over the world. We can't raise these kids alone. If we expect them to be contributing members of society, they need these supports. Honestly, once they reach a certain age, we as parents, literally cannot teach them everything they need to be a successful adult. It really does take a village. 

Thanks for reading.