Monday, July 18, 2011

Angst and Autism…

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]

Dear Mom,

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

Love Jake

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.


  1. That is so sad. I've had a talk like that with my son and it wasn't easy. He doesn't suffer from autism and it was hard. I like how you're very positive about things.

  2. Hi Jeni!
    I found you!
    Your above post has made me cry. Im sad. sad.sad. You just highlighted for me, in one paragraph, what my son must be feeling and I didn't have a clue. *more crying*
    they have trouble 'seeing' outside their own mind and world.
    Thanks so much for posting his letter! my son wouldn't even be able to write anything to say how he is feeling.

    xx *hugs* Lou

    I see I can buy your books now! Yay!

  3. See, I knew I wasn't alone out there, Lou - so even though our realities are still frightening, we're not alone.

    Jake was happy and content the next day, his moods vary and I feel like it's my JOB to keep it light and set the tone for the house. I don't want it to get too 'heavy' for what he's able to process. As far as I'm concerned, a day without laughter - even laughing AT the autism - is a wasted day. Those who say there's nothing funny about autism don't have my kids! We laugh all the time!

    Thing is, we only have today for a little while, and none of us are promised tomorrow so I never want to waste any day NOT laughing when I could have laughed!!!

    Jeni Decker~

    Good luck! And thanks Clairissa. You're always so supportive! ;)


  4. Wow that was an impressive heartbreaking post. I think about it with Junior. It is so difficult for them. My guy is only 4 but I have heard kids say they don't want to play with him because he is "different". It breaks my heart to see him keep trying. We too laugh at the stuff that goes on. Finding the humor in it keeps me sane.

  5. The worst thing about being a parent has to be the fact you can't protect your kids from everything.

    They will be hurt sometimes. They'll be weak. They'll be strong.

    All you can do is give him the best skills for survival you can, put a contact person or legal person in will to make legal decisions after your death. Make a pre-plan. Make a back up plan with two or three people who can help him make decisions on legal/medical issues if he needs it.

    Do it LONG before you die so that this person is familiar and he's practiced the plan.

    He'll have to aid your younger one. And perhaps that will help him, helping someone else.

    Life isn't perfect. All anyone can do is the best they can do.

    Not all group homes suck. Many do but not all.

    All you can do is the best you can do.

  6. Well, you have me bawling as you sometimes do. You make me laugh my ass off everyday and occasionally you make my heart ache. That's why you're my favorite writer. Yes, you've jumped over Christopher Moore. And you need to get the hell over thinking David Sedaris would be pissed at any comparison between the two of you. He'd love this post and would be honored at the comparison. Remember, David and I are best friends. If you ever feel the urge to freak Jake out, give him a hug from Kat. That should do it.

  7. Jeni,

    I'm having a hard time today and your post made me cry but it also made me happy that you are there for your boys and that you care so much!

    I am like your Jake. And I have been alone in this world since I was a teenager. I won't lie about how hard it's been. I spent a lot of time homeless and would have starved if an old homeless guy with a leathery face from years of exposure to the elements hadn't taught me how to eat out of dumpsters. Cliff saved my life.

    Now I'm on SSI and it's a real struggle because that's an income below the poverty threshhold, but I haven't been homeless in the 19 years since I was able to get on government assistance. It took me three tries to get on SSI because the first two times I was in such a bad way that I couldn't follow up on the paperwork -- I'd end up homeless again and too focused on basic survival to go back to the office and let them know that they couldn't contact me where I used to live.

    Once I did manage to follow through on the paperwork, though, I was an "open and shut case." I had SSI in less than two months - no denial, no appeal. They looked at my life and said, "here."

    Now I'm 45 years old and in graduate school. I'm seriously floundering and at the moment it doesn't look like I'm going to get my degree. And I still haven't held onto a job so I'm really nervous about whether school has increased my prospects or not. I need supports I'm not getting and I need accommodations I can't figure out how to get or who to ask.

    But the bottom line is that I have survived. I have made it this far. My whole life is "up in the air" right now but I know I'm going to continue to survive and, one way or another way, it's all going to be okay.

    And this is me doing it alone. Jake has you. Yes, you will die someday. But you're still here now and you're not planning to just kick him out of the "nest" to fend for himself. You are going to continue to support and help him as long as you can. Jake is going to be okay. One way or another way, Jake is going to be okay.

    And the whole point of me sitting here telling you my life story and how it's still shaky but mostly having a happy ending is to tell you the part that makes me happy. It makes me happy to read how much you care and how you are there for Jake. It makes me happy to read the words of a mother who isn't going to just let her kid eat out of dumpsters an dcall it "tough love." It makes me happy to read the words of a mother who sees her child's vulnerability and cares and won't abandon him because of it.

    You make me happy. You are a good mother. Thank you for being that. When I read the words of people like you, it's easier for me to remember that the world is not all bad. It's easier for me to remember that the world is just hard but there are good people in it.

    Thank you.