Coping with his disability

Benjamin and Mom doing some open communication.

One of the many benefits of RPM is that we now have insight into Benjamin’s mind, his thoughts and his feelings. For those who know Benjamin, Benjamin has ‘behaviors’.  He will suddenly start crying, wailing, shouting and biting his arms or hitting his head. We always had to guess as to what it was – does he want to go somewhere? does he want something? is it too loud?  Is it too over stimulating?  Sadly….now that he can communicate and let us know the reason behind these behaviors…we’ve realized our guesses were never right.

He has very clear, logical, rational reasons as to what triggers these moments (I like to call them that).  In the beginning when he first started to be able to openly communicate, some of these moments were as a result of pain and some were as a result of emotional thoughts.  He was able to tell us that he nearly daily got really bad headaches and  had a lot of gut pain. On a referral from someone with similar health issues, we started seeing a new doctor and he has really helped with that. Benjamin has told us that he gets very little head and gut pain now.

Benjamin’s moments have definitely decreased in frequency and intensity but they are still there. He is a very deep, insightful young man (he is his father’s son :-)..) living in a world where he cannot speak but has plenty of time to think.  Without the distraction of verbal babble that we all do all day long, he thinks about every situation in depth…he analyzes, he worries about the future, he projects his feelings on others. Of course, going through puberty does not help. Most every adolescent child is flooded with intense emotions.

A recurring theme that we are noticing is Benjamin’s very acute awareness of his disability.  He is so hard on himself and gets so frustrated with his body.  These are just snippets of some of what he has communicated.

Recess has always been hard for him.  He goes to a program that is part of a small private school so he has lots of neurotypical kids to interact with.  These kids are wonderful.  They treat the Keshet kids like any other kid.  Just a couple of weeks ago I was observing recess and Benjamin was happy just walking around the courtyard.  Some of his peers were playing volleyball and as Benjamin ran through the game one of the girls handed Benjamin the ball and asked him to throw it.  He took it, ran a little bit, dropped it and then ran off and started to get upset.  When I asked him later why he got upset he said: ‘I was embarrassed that my body would not co-operate’ <he wanted to be able to throw the ball>.

As with any pubescent boy, he has lots of questions about girls, puberty, his body etc.. He has asked numerous times if he can kiss a girl and we have assured him that most 13 year boys do not kiss girls. Anyway, after one of his intense moments, he finally said what we felt was behind his keen interest in wanting to kiss a girl.  ‘I don’t think I ever will be able to kiss girls because of my autism’.

This week, his Language Arts class was participating in a fun book project.  It was a ‘book in a bag project’ where they had props from the story, along with index cards that summarized the story and they gave an oral presentation to the class.  Obviously, Benjamin could not participate in the oral presentation part of it.  His teacher wanted Benjamin to sit and listen to his peers give their oral presentation. Benjamin could not sit still and kept running from the room. When I asked him at home why he did that he said ‘I was ashamed that I could not be part of it’.

Benjamin had another opportunity to hang out with his friend Mitchell this week who also communicates through RPM.  This time Benjamin went to Mitchell’s house.  They had a great time.  Later at home he got very upset.  We asked why and he said ‘I was thinking about my time with Mitchell.  I like spending time with him’.'<but it’s> reminding me of my autism, not being able to speak.’

The school has been wonderful and we all work well as a team with Benjamin’s academic and social-emotional welfare being our primary focus.  This is all new to them too.  We’re breaking down the walls of autism training and teaching.  We feel like we’re writing a new book together.  We got together as a team and decided to start counseling at school. Benjamin meets with the school social worker and Kristen is with him to interpret and they talk about what is positive about school and what concerns and worries he has.  He says it’s been helpful.

At home, we constantly remind him that he has already proven the impossible to be possible.  In his own words from last July ‘I have hope now. Trust God with everything. No doubting’.  For now, we will focus on the present and work on all the things that need to be worked on.  He has made so much progress in this short space of time in so many areas…the future is very bright.  Benjamin just signed a pledge on the internet called the ‘No Barriers Pledge’. It was started by Erik Weinhenmayer, a blind adventurer who among other things climbed Mt Everest. In Erik’s words ‘it’s not a life without barriers, but rather a life that in reality is full of barriers. But, it is a way of living in which barriers are confronted with a mindset that “What’s Within Me Is Stronger Than What’s in My Way.”