Monday, November 18, 2013
Written by Barclay Lynn and Jonathan Dickstein
This is Autism, at least our version,
I love my son. I am fascinated with the way his brain works. I love my family and the strong family unit we have become. I love being a mother, it is the best job I have ever had. I enjoy my kids and I love their company, they both make me laugh out loud every single day. I am fascinated by who they are and who they are going to become. I do not consider my son to be a burden, but his Autism can be a burden. I regularly find myself in awe of the many special abilities that he possesses. I also consider some aspects of his Autism to be painful for him and, by extension, they are painful for me. That is a huge burden because I cannot always come between him and that pain.
For Autistics on the higher functioning end of the spectrum or those who have found the right combination of support, services and environment to aid them in becoming the best version of themselves, Autism may be a gift. I know Autistics who are brilliant and even-tempered and their Autism does not prevent them from comfortably participating in life. For our son, although he has some very cool gifts arising from his Autism, Autism overall is not a gift. Our son is limited in everything he does from sensitivities to new foods, using utensils, washing his own hair, getting a hair cut, speaking clearly, being fully aware of appropriate danger, taking turns in a conversation, brushing his teeth, managing loud noises from his everyday environment, having a social life, and getting an exemplary education. He wants to go out and do things on his own, like his sister and the other kids he sees, but he is not able to do so, and he is very clear about how much this frustrates him.
This isn’t your average parenting experience. I love my son, but this is hard work, and not just parenting hard work. There is work to make his environment safe and to prepare and educate those who come into contact with him. There is hard work in setting up, managing and overseeing the therapies and special education programs that he needs, in dealing with the constantly obstructive and uncooperative insurance companies and school districts. My son is a gift and Autism may be feel like blessing for some, but please don’t sell all of our efforts and all of his hard work short.
Furthermore, do not minimize all that my son struggles with. My son is smart, playful and has a great sense of humor – but that is despite his Autism, not because of it. He also has an incredible memory, great recognition of details, radar-O’Reilly-like hearing and a keen interest in music – positive attributes contributed by his Autism. However, the list of obstacles, hindrances and frustrations caused by Autism is far longer –- the radar-O’Reilly like hearing causes him to freak out if he is outside for the Tuesday noon safety siren in our city and his oral sensitivity precludes him from going to the dentist for a cleaning (so it is off to the Operating Room under general anesthesia for him and a huge medical bill for us). The list of obstacles is far too long and occupies our son’s life front and center, and these are his frustrations as communicated by him, they are not our frustrations imposed or projected on him.
Worrying about our son’s future is different than worrying about our nuerotypical daughter’s future. Yes, I worry about her future – I worry about the ups and downs of middle school, I worry about the hijinks and mischief she and her friends will get into in high school. I worry about drugs, I worry about drunk drivers, I worry about boys breaking her heart and I worry about the time when she breaks someone else’s heart. My worries for her are the same as my friends’ kids and her friends’ parents.
For our son, my worries are different. I worry that I will have no one take care of him and love him after I die. The thought of my dying before our daughter is in a position to be responsible for him terrifies me and causes me to lose sleep at night. He’s not an easy kid to live with. I worry that he will walk into the middle of a busy street and get hit by a car (given his propensities to wander and get distracted). I worry about a place for him to live after I am gone because he is not likely to hold down a job that will financially sustain him in today’s society. He is very, very intelligent – just in his own way. However, he is now 14 and despite every possible effort we have undertaken for him, and despite being an ardent advocate for him and doing some absolutely crazy, amazing things to help him overcome his many obstacles, I do not believe I am going to launch him into his own self-sufficient being. He might live on his own with supports nearby or he might live in an apartment attached to my house or maybe he will live and hopefully travel and enjoy life with us. I am ok with that. I am ok with who he is. I don’t know that he will marry or have children. It is highly unlikely. I believe, in the grand scheme of things, he will have a life that is happy. But I do worry about those disappointments when he talks about being a grown up, getting married and having children. We were told when he was 5 that he’d never get an education, never have a job and never live outside of our house. I have fought that dire diagnosis with every ounce of everything I have and at age 14, I am confident he is getting an education (he reads at an 8th grade level or so right now) and that we are doing the best we can for him. I just don’t know about the other two.
Frankly, Autism itself didn’t really kill us, but the fight for services, support and assistance to get to the right help for our son has been horrific. Our fight with the school district and insurance companies turned nasty. In the eye of a perfect storm, the public officials and the insurance companies took out after my husband and my family. We had little choice but to opt for the least costly and fastest way through the train wreck in protection of our children. Years of progress for our son lost while we fought in court. After being chewed up by the process, our reputations in shambles, we are left digging out, hopefully retaining our dignity and grace and most importantly, with our children and family intact. Autism didn’t cause this, but we live in a society that does not take care of its differently abled. To make matters worse, we were vilified for taking a compromise approach of splitting costs between insurance, the school district and ourselves to create the best possible therapy and education program for our son. I was accused of trying to create a “Cadillac” program for my child. What I was doing was desperately trying to resolve his pain.
Is Autism a tragedy? I don’t know. But let’s be real, in some cases, it isn’t pretty. It isn’t my son’s fault and I don’t think less of him for it. I think he’s funny, I think he’s mischievous, I think he’s annoyingly exact and literal – and sometimes that’s funny. We are lucky that we fought for what we have accomplished for him. For example, we have achieved significant gains in his level of education and self-help skills, he has not resorted to self injurious behaviors and we have found a way to help decrease his need to wander. Seeing him constantly struggle, however, and express frustrations at the obstacles preventing him from pursuing his dreams breaks my heart – and that is the hardest part of all.