There’s something to be said about the way a mental illness can take someone away from you. There are days that I feel like I am battling this nemesis that is keeping my son away from me. As i try to fight my way past this thing called autism just to get a glimpse of the beauty of his soul I can feel the anger bubbling up. And its not just the screaming, the biting, the obsessive tendencies or the distant look in his eye, Its the endless paperwork, Its the therapists and the long phone calls with no resolution at the end its the realization that the time you are wasting on all of these is only helping to create a larger space between you and your child. Its the Ah Ha moment when you realize that the system that was set up to help you to fight the Autism is actually aiding in its goal to separate him more.
As I sat at the table filling out form after form and listening to the therapist with the blank word document staring me straight in the face with that blinking line screaming at me to write I couldn’t help but feel lost in myself. I tried to organize my thoughts but everything felt so jumbled as I secretly longed to be in silence.
I think that’s the hardest part. The reset time is minimal. The emotional regulation time is non existent from behavior, to a declination of services, back to a behavior, to a conversation with my husband, to a tech asking quesitons, to house work, to thinking about picking up more hours at work back to a behavior its exhausting and sometimes, you just want it to all go away.
Today, as I watched him work in such a controlled setting with therapists talking in an unnatural tone I couldn’t help but wonder what he thought of all of this. I just wish I could have a conversation with him. As we prepared to take him on an outing and we were putting on his shoes and showing him how to tie the laces I sat behind him and hand over hand said “cross the laces, put it through and pull” he complied as best as his fine motor abilities would allow and once both shoes were tied it happened. He pooped his pants. I looked at the Tech and said, “well then, Ill go get the shorts you put him on the toilet”. I ran upstairs and got the shorts came down the stairs and walked into the bathroom where my near 10 year old sat hunched over on the toilet reading a clifford the big red dog book and began taking off the shoes we had worked so hard to put on him. It was quite perfect really as in both situations both metaphorically and literally everything we had worked for was being undone.
That’s the tough part of autism. Its not always forward momentum. This time last year Aiden had no accidents. I would boast that he was “my most potty trained kid” but in the last few months I have noticed a decline in this area and therefore we are back to timing bathroom breaks and logging accidents. “Did something in his schedule change?” I’m often asked… and the answer is almost always the proverbial, “Nope, nothing” which leaves everyone guessing and hypothesizing the cause and so the trial and error begins. “if we do this, maybe he will do that”… “If we change _____, then that behavior will change”… etc… until either the behaviors change or you give up and move on to the next behavior you prioritize in its place and just hope that the behavior will decline on its own.
Autism, as with any other mental illness carries with it no rhyme or reason. Like I told my mom once “He doesn’t, until he does”. Meaning that he won’t climb on the roof until one day you find him out there smiling, cooing and flapping joyfully and then it becomes a common occurrence. There’s no planning for it. There’s no explaining to him the dangers of falling off the roof, there’s no asking why he does it or how to prevent it you just have to accept it for what it is and block it the best you can. And that’s the exhausting part. There’s no letting your guard down. Just because for the last four months he has stayed in the backyard on the trampoline doesn’t mean that today he will. Today might be the day he learns to climb the fence to get a better look at the neighbors tv that caught his attention a week prior. (yep its happened. he went into their living room and they found him flipping their channels)
even now after 6.5 hours of aba the tech comes in to tell me “hes done, but can you do me a favor and ask him his name one more time. I need to ask him just one more time for complete data” I complied and he said “Aiden” and i walked away exhausted and annoyed. Yet another scripted and forced interaction. As she finished up her data I chased Aiden to the basement, through the backyard where he proceeded to pick up dvds off the grass he had thrown out our window two days prior, back up stairs and then i finally said it, “Aiden! Enough is enough no PS4 here is your portable dvd player and the harry potter dvd you wanted”. The look in his eye told me he was not about to accept this structure I was offering. I placed myself right at the top of the stairs and planted my feet as he pushed on me. Then it happened. I told him he could go to his room or my room with his dvd and dvd player as we battled down the hall until finally i was on top of him holding him to the floor. It wasn’t aggressive but it was me showing him that his obsessions were taking over and he needed to slow down. I held him there as he looked at me with anger in his eyes. after I let him up he locked his door (which is a bit ironic as the lock is on the outside of the door for reasons of containment when needed) and slammed it. as I walked back downstairs where the tech was still sitting and doing data unaware of the goings on I grabbed a bottle of water and disappeared back into my room wondering why the therapist was even here.
There are days I struggle to understand it all. moments that I question if what I am doing is right. As I watch him work and struggle through his day my heart breaks for him. As we battle this thing called Autism I find myself searching for something beyond that distance in his face.
Then there are those moments, Those brief moments of clarity when it all makes sense. Most of the time in the form of him cuddling on my lap, sucking his thumb and looking straight into my eyes when i can feel his whole body relax as if he has chosen me as his safe place. There are the times when we walk into a store and he walks with me holding my elbow (he never holds my hand) without a meltdown as he picks out his favorite snack. There are those refreshing moments when hes swimming in a pool and i can see the contentment on his face as his body lays weightless and cuddled in his life jacket as he rides the small waves made from the other children at play. It’s these short moments when the real world breaks that barrier and I can truly see him and that’s when I know that no matter what, there is a boy in there and regardless of all the struggles, the irritations and the ups and downs its all worth it. There’s not a love like it. There’s nothing that can make me quit fighting for just a glimpse of what lies past the mental illness that tries to keep him from us. Let that be a lesson of patience to all of us. There is a meme that has crossed my facebook a few times that I always take a few seconds to hit the share button and its quite profound really, It says, “My child is not giving me a hard time, he is having a hard time”. I cant help but wonder how the lives of those affected with mental illness would be different if we apporached everyone with this same thought. Maybe everyone would be a bit kinder, more understanding and maybe the prospect of a better quality of life for those affected would increase. Just think about that in your dealings with “difficult people” or even your own typical children. Because even typical children have tough days.