Wednesday, September 25, 2013

How Could They Do It?

The recent reports of autistic people being murdered (or attempted) at the hands of their parents, has left the autism community reeling. I’ve read opinions all over the place, from those who can sympathize with their actions to those who very simply, cannot. These opinions have been broadcasted from every perspective; nearly.

Here is where I may have a unique point of view. I am one of those people, who had to face the reality that I was not fit to care for my children, one of them being autistic. I had to decide what to do in that critical moment of realization. I faced a moment of truth, much as these parents did.

I am an addict in recovery and my husband is an alcoholic in recovery. Our family had many struggles; and we were definitely ill equipped, to say the least, to care for a significantly disabled child. Neither of us had dealt with the initial grief that all parents have when their child is diagnosed with a significant disability. He drank while I took pills to try to numb our broken hearts.

One fateful day, it all came to a head. I was in massive drug withdrawal, and I knew that in a matter of minutes or hours, I would start having uncontrolled seizures, that could result in death. My heart was pounding out of my chest, my body shaking uncontrollably and my mind was frantically racing.

I knew I had failed my children. Every day I was just trying to survive. Luxuries like therapy for my autistic son were not an option. I was short tempered and scatter brained at best; neglectful and self-absorbed at my worst. They deserved so much better. 

The next choice I made, took more courage than any other single decision I have made in my entire life. I picked up the phone and called Child Protective Services and told them I was not a fit parent and that they needed to pick my children up. Things moved swiftly after that. My children were swept up and put in the care of my sister (thank God). 

My husband and I were given a long list of things we needed to do, if we ever wanted our children back. Day by day, month by month, then year by year, we chipped away at that list. The list consisted of things like rehabilitation, AA meetings, supervised visits and extensive drug and alcohol testing. These were things that we needed to do, and in the end, saved our lives. 

There were several times, that we thought we may lose our children to the system. Every report CPS submits, also evaluates how ‘adoptable’ your children are, in case we did not meet the requirements.  We went through the grieving process over this possibility. I knew what it was like to physically ache to hold my babies and be faced with the chance that I may not get them back. I wouldn’t wish that kind of pain on my worst enemy.

While my decision was painful, I did not see another one. I am a mother; it is in my DNA to put my children before myself. For those parents, that tried to, or successfully did, take their autistic child’s life, there was obviously something that loomed larger than this. Something that over-rode all of their parental instincts. 

I’m certain that life with their significantly disabled child was incredibly challenging. I know first hand. I’m certain also that these people were ill equipped to meet those challenges. I understand that also. But, is it a decision I can empathize with? No, never. I have been at the edge of the breaking point, staring down my very limited choices, and that was never even considered as one of them. For those people, there was clearly something much larger, much more ominous.  Something fundamentally very broken, that had no connection to their child’s disability. 

Unquestionably, there are not enough resources out there to support the autism boom. But to place the blame of these events on a lack of support system or services, is misguided.  And, most misguided of all, is for the blame to be placed on the disability itself.  The talk of these ‘poor’ people dealing with this ‘terrible’ disability is unfortunate and does no service to the autism community. When somebody walks into a convenience store and shoots the clerk, we don’t ask what was going on in the murderer’s life to make them pull the trigger. 

The stressors caused by living with autism, clearly just pushed these individuals over an edge that they were already standing on. Instead of looking for the cause in their children, let’s look for the cause in the individuals themselves. We need to stop rationalizing such a brutal crime, and see it for what it is. Murder.

That does not mean that these parents didn't suffer horribly. Obviously they did. It is clear that there was some kind of mental disorder that drove these people to such a terrible state of despair. Let's search for, recognize and treat what is broken. 

One in three disabled children are victims of some type of maltreatment (i.e., either neglect, physical abuse, or sexual abuse) whereas one in 10 nondisabled children experience abuse. These children are the victims, not their parents. There were probably red flags in these cases, but they were most likely overlooked because the parents were under such significant stress. Let's not turn our head when we see potential abuse, just because the parents are dealing with a disability. We need to look out for the most vulnerable of our citizens. As parents, as part of the autism community and mostly, as human beings - we owe them that.

Tuesday, September 24, 2013

Let's Get This Party Started

Today was the first day of school for Rocco at the neurotypical middle school campus. I became convinced that I was actually much more nervous than he was, when, he gave a deep sigh from the back seat of the car and said somberly “let’s get this party started.” 

I tried to suppress the urge to hold his hand as we walked across the campus. I knew that it was possible that it would embarrass him. With his black vans, camouflage pants and long, blond surfer boy hair, he blended right in. The only way you could pick up that he was different, was the battered red flannel jacket that he clutched (his lovey).

We had been to the campus numerous times over the last couple months. My hope was that familiarity with his surroundings would help him adjust. As we walked down the halls, I noticed the hallmark expression of most children entering the middle school world; bewilderment and self consciousness. For a moment, I felt grateful that Rocco would not ever have to feel the pangs of teen angst.

That gratefulness slipped away, when I noticed a couple of older boys wearing death metal tshirts, eyeballing him when he yelled suddenly "yup, that's where we're going!". Probably repeating a conversation we had earlier in the morning. My fear of him being teased ruthlessly, sat heavy in my chest.

The teacher and her aides were warm and welcoming. Rocc already knew where everything in the classroom was placed from his previous visits, so he walked straight to his cubby, put his backpack in and marched to his desk. He grabbed the first item on his visual schedule and sat down at the desk with purpose. He looked up at me anxiously and asked "Can I keep my jacket? I want to hold it." I gave him a little hug (as much as he would allow) and reassured him that he could keep his jacket.

I talked to his teacher about the contingency plan in case things went awry today, and I blathered on about things Rocco liked and didn't like, I'm sure giving her way too much information. Rocco gently put his hand on my arm and looked up at me with those blue eyes, "Can I go with you Mom?" he asked pleadingly. I felt that sharp twinge in my chest and looked back at him reassuringly, while I fought off tears. "No, your going to stay here today with Miss Stacy. You'll have fun, I promise." sounding far more sure than I felt.

The teacher assured me that he was fine, so I left, and just made it to my car, where I choked on a sudden flood of tears. As I drove away, I assured myself that he was going to be just fine. The mental image of him on the swings yesterday materialized soothingly in my head. 

We had been at his sisters school that weekend and she wanted to visit the swing set. Rocco walked right over, sat down on the swing and started using his feet to force the swing higher and higher, a joyful grin on his face. This sounds like an everyday thing. Only it wasn't. Since he was a little guy, the swings terrified him. When I could convince him to even sit on a swing, he would dig his feet into the sand, in order to cease any movement. A few times, he had let me push him very gently, but after a couple moments he would plant his feet back in the sand.

But there he was, feet in the air, the wind in his blond curls, swinging away. As I sat, stunned, watching him, I realized something that I knew, but sometimes forget. He courageously faces challenges every day, with more strength than most of the people I know. He would conquer this as well.

So come on Mom, I told myself, let's get this party started.

The Sweetest Joy

Autism first touched my life in in October 2002 when my beautiful son Rocco was born. With golden blond curls and brilliant blue eyes, he looked like an advertisement for baby food. He was healthy and happy, but as he grew we noticed things weren’t quite right. He didn’t smile like other babies and he wasn’t walking or talking when he should.

The first time a doctor mentioned the term ‘Autism’ to me in reference to my child; it felt like a cold, swift blow to the stomach.  I sat in the sterile doctor’s office, holding my chubby, cherubic son and thought, she must be wrong. Not my child.

Time went on, and it became undeniable. Autism was going to be a part of our life, whether we wanted it or not. We had to gently let go of those hopes and dreams that every parent has for their child. Our aspirations for things like college football, getting married, having children, all painfully, slowly drifted away. And in their wake, left our hearts broken.

But, in their place, we discovered a simple joy in what he could do. Because he had to fight much harder to accomplish that which comes easy to typically developing children, his achievements were that much sweeter. I will never forget the moment he uttered ‘Cup Mama’, gesturing to his cup. I was bursting with pride, so much more than when my other two children first starting speaking. Speech did not come easy to him like it did for other children. He worked so determinedly for those two words.

Through the years, we have had heartbreak and indescribable happiness with him.  Of course, some days are so difficult, I’ve prayed to God for the strength to get through. And then other days, he does something so incredible that it takes my breath away.

The most amazing thing about my son; is that he is pure in every way. He has a hard time even grasping the concept of lying. His unadulterated love for others, his lack of guile and inability to be deceptive is something the rest of us should all aspire to. He is surprisingly intuitive with people. He innately just knows when one of his family members is sad or struggling. Because his hugs are a little fewer and farther in between, they are the sweetest hugs I know.

He is in middle school now, and this year he will be moving from a campus with only special needs children, to a typically developing campus in a special needs class.  For years, he has worked tirelessly to learn the things that are asked of him. To Rocco, he would rather draw you a picture to communicate. But because we want him to use his words, he works as hard as he can to do just that. And come the first day of school, when I walk him into his new classroom, I know that my sense of pride and joy will be without compare.