Monday, July 18, 2011
Last night Jake came out of his bedroom sobbing and handed me the above letter...
Let me digress and set this up for you...
This week we all had a great time at the beach, as well as going bowling and to the arcade with his cousin Max, (who is visiting for the summer) but it seems Jake is starting to think about Max returning to Florida when summer vacation comes to a close. He’s also experiencing a surge of hormones mixed with teenage knowledge that has him feeling self-conscious, unhappy and unsure of almost everything he does.
When Max first arrived, Jake quickly realized they didn’t necessarily like to do the same things they did when they were much younger. It also became glaringly apparent that the vast chasm between the neuro-typical boy and the non-neuro-typical boy had become even more vast. Where, when they were five, his cousin just laughed or dealt with all of Jake’s autistic ‘quirks,’ now Max found it harder (and sometimes frustrating) to understand where Jake was coming from. His up and down moods and acting out.
With high-functioning autistic kids, often their behavior manifests itself in what would normally look like rudeness or tantrums. The key is being aware of where these behaviors come from - in Jake’s case, his fears and feelings of being ‘less than’ other kids his age.
Jake has few friends because he has trouble communicating with others. He doesn’t immediately understand how other people think and feel, and often his reactions to them seem impolite or off-putting, even though it comes from a place of not ‘getting’ the other person. Autistic people are often socially inept because they are very literal thinkers. Jake only understands how his mind works and has to be told how others feel - unlike most of us, who can suss out the meaning of an emotion based on body language or facial expressions. In essence, most of us take for granted the things that autistic people have to learn, rather than innately know.
Jake’s sudden morose mood culminated in him writing me a letter to express his feelings. He sat while I read it, waiting patiently so we could then discuss it:
[TRANSLATION of the letter above in case you can’t read his writing]
When Max leaves I will be sad
because I will have no friend.
I decided I don’t like my friend
Cody because he thinks of life
with no meaning. I’m also sad
that when you die I don’t
know what to do. I will be very
sad and I just can’t live without
you because I will not have
anyone to love and follow orders
and keep me safe. I’m just
soooo sad right now and I don’t
know what to do. I love
You very much Mom
This is what you’d call a truly heartbreaking parenting moment. What do you say to your fourteen-year-old kid when he tells you he’s afraid of what will happen to him when you die? How do you make it better for him so that he doesn’t spend every day of the rest of his life obsessing about existential things like heaven and hell? Not to mention not-so-existential things like his future well-being…
I got him calmed down by telling him that he was tired from all the activity of the day - doing my best to make light of such a huge topic, so as not to further alarm him - but in the back of my mind I kept thinking, He’s right. He’s worried about the same things I worry about. This kid is just smart enough to understand the frightening aspects of life, but not pragmatic enough to push them to the back of his mind like the rest of us do when we know something is out of our control.
His daily inner monologue is a perfect storm of fear and confusion that ultimately creates a tsunami of angst for someone already suffering from obsessive compulsive disorder.
I get choked up thinking about my kids’ futures. It’s my biggest fear as a mother. I think Jake could make it if he could rid himself of his debilitating fears and insecurity. He’s an odd little duck but he might be able to trundle through life, bobbing and weaving much like his mother does on a daily basis.
Jax is another matter, altogether. He’s blissfully unaware of even the existence of social ineptitude. He’s on a stage of his own and we’re all bit players, coming in now and again to offer clothing, shelter and affection. Jax is barely verbal and even though he’s making great strides, at almost ten years old, he doesn’t understand basic concepts and is able to speak, but only enough to get his needs met - and even then, only to those who understand his ‘language.’ He’s unaffected by social mores or his lack of appropriate actions because they do not exist within the context of the production he’s starring in. They don’t exist for him yet, anyway. I almost hope they never do. What you don’t know exists can’t hurt you… as much.
Some days, I think Jaxson is the lucky one. He is able to skip through life without the kind of worries that plague his older brother.
But one day I won’t be here… and neither will the rest of their family. Who will take care of my adult children when they’re unable to take care of themselves? There might come a day when I’d have to realistically consider a group home. Even writing those words make me shudder because calling this a last resort is a vicious understatement.
There isn’t a horror movie in the world that’s as frightening to me as wondering where my children will end up when I am no longer around. I’m certain I’m not alone in this fear because it is something many parents of disabled children have to deal with. But on a personal level, it feels very isolating. It is my cross to bear and it will never go away.
So, tomorrow I will continue to laugh and take everything in stride, shoving the worry into the depths of my mind - that special place I reserve for things that are mostly out of my control. But today I worry…
… and spend a little quality time in the bathroom, longing for the days when a nice bong hit could fix anything.