Parental Courage - Knowing when it is time to rock the boat

Revelations come to us at various times while parenting.  We haven't a "how to" manual and thus as a parent of an autistic young man I realize that I have made my share of mistakes.  I also know that once I acknowledge those mistakes I can change -  when ever I need to.  Yes, I can learn from the past and move forward, but sometimes I need a bit of courage.  I need that bit of courage to change things up - try something new, be willing to rock the boat if needed.  I have a courageous son that shows me how to do it in everything he does.  I hope to live up to the high standard of being this young man's mom and so I gather my courage and prepare to change things up.  A particular revelation came to me as I contemplated the recent events of the past week.  A revelation that now pushes me to rock the boat.

I recently had a friend visit me for a whole week. It was a great experience for me as I hadn't seen my friend in many, many years. We live almost 1000 miles apart and that means visits are a rarity. Although we talk often on the phone our last actual face-to-face visit was at least 7-10 years ago. I (and family) saw her last in Illinois. This time she came down to Virginia.

Matt does not remember Carol, my friend of 42 years. He lost all his childhood memories as he went through puberty and doesn't remember playing at her house, going out to dinner, etc., so I talked with him about her impending visit several times to prepare him for what would be a very big change in his daily routine.

They pulled in last Saturday and Matt welcomed them (Carol brought her friend Larry) without hesitation.....then proceeded to his game room where he stayed most of the time. Carol is an early-to-bed, early-to-rise kind of person and Matt a late-to-bed, late-to-rise kind of guy. Thus, with opposite schedules Matt was only subjected to the noise, commotion and general chaos of the house for about 5 hours a day. Still, I could tell those 5 little hours a day were pretty hard on him.

Tough as it may have been, he never once complained. As usual I watched his mannerisms and gestures and body language and enough silent communication was provided to know the poor guy was feeling stressed. His one moment of excitement was when he was about to go for a drive in Larry's beautiful new copperhead pearl painted 2013 truck. After 10 minutes of riding in the back seat next to me I noticed Matt's face had dropped - he was disappointed by Larry's driving. It wasn't that Larry was a bad driver - he was a cautious driver; braking on every single curve, driving under the speed limit by 10-15 mph, constantly wondering aloud if we were lost (which Matt knew was just not true). But hey, this is Virginia and those of us who live here have been driving those curvy roads for years. Illinois is flat, roads are generally straight - big, big difference. But I could see Matt was getting quite frustrated.  The “joy ride” turned out to be just more stress.

The week flew by - as vacations always do - and upon waking on Friday to find them gone, the house back to normal, and his old routine again made available to him, Matt arose jubilant. His step was light and quick, his smile radiant, his voice was resonating a happy tone. Life was again, good.

There are 3 things I wish to share with you about this past week's experiences. The first is to again point out just how far he has come - allowing strangers to be around him without meltdown, no show of defiance or anger, no sour disposition. Only one rude comment (as Larry was driving and Matt's frustration peaked he stated - "Larry, you've got to start using your brains!" I took Matt's hand and quietly told him that comment was inappropriate. It wasn't something one said to a guest.  Matt has told this to me before and it's his way of saying, "idiot" - but not meant in a mean way....

All in all, I thought he did wonderfully finding his own way to deal with all the new environmental stressors. Understanding his stress level was high I didn't push him to interact very often. Then again, I didn't have to. My friend stepped into his life without prompting. She stepped into the world of his game room and initiated conversations. She spoke with him as a young man with wants, thoughts and feelings. Matt replied, interacted, and was polite. My friend made the first move - knowing that Matt can not initiate social interaction. She accepted him for who he is and went to him. I was impressed by her ability to get him to respond – just as natural as could be.

And that brings me to the second thing I wanted to share with you - I had an epiphany while watching them interact. I know that no matter how old Matt gets he will ALWAYS have trouble interacting on a social level. Of course he will - Matt is moderate / severely autistic and that FACT will never change. What I find most amazing is my autistic son has more acceptance of other people's lack of communication skills than they have of his.

It all came together as Matt and I were driving to town yesterday and Matt said, "Ahh, Larry is a terrible driver. He needed to use his brains. Just terrible- and he can't navigate very well." Out of the mouth of babes.... the truth as Matt saw it. Larry did have trouble driving. He's almost 70 years old and his vision isn't what it used to be. He was driving on curvy roads where he knew no landmarks, on unfamiliar mountains and down unfamiliar valleys.  I explained all this to Matt.  Matt nodded his head solemnly - he understood. Matt’s expression of  “Poor Larry” said it all. He had accepted Larry's disability (his inability to drive on curvy roads) almost immediately after the explanation. Don't you wish neurotypical people could manage the same thing of autism?

Has it hit you yet? Do you see what is so amazing? Acceptance of a person with autism means accepting who they are - right here, right now. It means understanding there is stress, there is bewilderment, that everything you take for granted in your understanding of life is very frustrating and confusing for them. Acceptance means initiating the conversation. It means not overstepping their boundaries. It means having the GUTS to step out of YOUR own comfort zone to initiate a conversation and keep it going. Isn't it strange that Matt can accept people who do not act as he thinks they should, fairly easily and yet it's not like that in reverse. Normal people are not that accepting of those with autism.

Too many people never make that communication attempt. Yes, that includes relatives and a few friends that are so uncomfortable with the thought of autism and so afraid of the communication differences that their only interaction with this wonderful young man is a "Hi Matt". I stopped trying to force them to accept my son long ago, but I haven't been able to give up on the idea of joint social interaction. As frustrating as it has been I still try to encourage an interaction...... but as the years go by I am realizing something profound- that it is very difficult for most people to initiate a conversation and keep it going if they don't get the feedback they want. They say their required "hi" and then ignore that he is even around. As if he did not exist - unless he approaches them (which he never will). It makes me want to scream: NEWS FLASH!!!! Matt is autistic!

So I had an epiphany in realizing that the problem with the communication is not so much about my autistic son as it is about those that think they are "normal". Those that seem to have no problem speaking to other people  ..... until Matt is around. Why is it that these normally vivacious, outgoing, loving people can not communicate to save their lives when around my autistic son? Why can they not initiate a conversation? Why is Matt just seen but not heard? Is it really that hard?

Which brings me to the third (and last) important item I wanted to share - my own guilt.  I have allowed the lack of interaction and the lack of communication – yes, it is my fault.  I have always allowed Matt to go off by himself while I interacted with family and friends.  I would do the socially acceptable dance of immersing in conversation while my son – my wonderful, accepting son, sat by himself content to play a game or watch TV.  I didn’t push.  I didn’t make a scene or stop the presses.  I just allowed the time to progress knowing full well that Matt was missing out.  Why?  Why do people conform to the socially acceptable behavior and sit quietly in the boat when every aspect of their being is screaming to not only rock that boat but tip it plum over?  It's about damn time I tipped the boat over.

I am ashamed of myself for the last time.  I will no longer sit quietly while my son endures another get-together where he is left out.  Maybe I am getting stronger.  Maybe I have learned enough to know what is right and what is not.  Maybe I have finally found my own courage.  What ever it is I needed that kick in the pants.  I can not expect others to learn from me if I haven’t the courage to teach them.  I have made up my mind that where ever Matt goes you will find me also.  If he is relegated to watching TV or playing a video at another’s house then I will be there too.  I will initiate the conversation just like at home and I hope I will demonstrate to all those neurotypical people that I love so much but who are afraid of conversing with an autistic young man, just how it’s done.

I am seeing – really seeing for the first time - that the social interaction and communication deficit is more of a disability for the "normal" person than it is for my son. If Matt can accept a person's differences and still attempt to communicate the best he can (mostly non-verbal) and still wish to be included then he should be allowed the same respect. Over the years I have found many people will say they "understand" autism but then never so much as attempt to interact or reach out. They are afraid.  It isn’t understanding – it's avoidance.  

So I have my work cut out for me as I use my new-found courage to rock the boat.  It seems to me that what’s missing in our attempts to teach social skills and communication to our autistic children we forget that we also need to teach these same skills to those who are neurotypical.  If I am going to be successful in gaining autism acceptance for my son then I will need to first teach those without autism HOW to communicate and I must do it by example. It's not a matter of them knowing about my son’s communication disability....after all, autism is just a word.  It's a matter of acceptance of autism.....of who he really is.  Matt is a real person with all the feelings, thoughts, ideas and dreams as any other human being.  It’s something I am afraid others will never realize if they are too uncomfortable to simply sit and talk with him.

Desperate times call for desperate measures . . . . forget rocking the boat - it's time to tip the boat over.