Today, we experienced every parent’s, especially every special needs parent of a non verbal child, worst nightmare. Benajmin was missing for nearly two hours!

It was our first day of Spring Break in the Phoenix area at Jeff’s parent’s house. We had a slow morning and Benjamin was a little agitated communicating that he was ‘bored’ and wanted to scooter (we brought his adult razor non-motorized scooter with us). When Donna got home from the store, he and I went out on a paved bike trail. He on his scooter, me running behind him. We’ve done this trail a number of times before. It’s hilly and curvy with lots of fast downhill and plenty of inclines. It was  pretty cool AZ morning – in the low 60s. We also scooter a lot back home with no issues.

He was happy! Big grin on his face as he scootered away. I was having a hard time keeping up with him. After much hollering at him he stopped and waited for me earlier on. But then he got on a momentum and with the combination of too many inclines and more strength than he had last year when he was on this trail, he got further and further away from me. Despite me yelling and yelling at him to stop (believe me, I can yell..just ask Jeff) he kept going and I lost sight of him.  I ran as fast as I could and kept thinking I’d round a corner and catch sight of him. I never did. I kept meeting people and they said he was just ahead of me.  I finally called Jeff to figure out where the trial ended and he met me. The trial ended (it’s a little over 3.5 miles) at a busy 4 lane boulevard. No sign of Benjamin.

We called 911 who responded with every resource they had. The response was amazing. They had cops in cars, on bikes, on razors scouring the area. They even had a helicopter out. They put out a community alert to all local residents and a lady saw him scootering in her neighborhood and let the police know. That’s how we found him nearly two hours later! He was a little sweaty and dirty but none the worse for the wear.

A few hours later back at John & Donna’s house Jeff and I had this conversation with him.

US: Were you aware of what happened today?

B: Yes. I was lost. I didn’t wait. You asked me to stop.

US: Why didn’t you stop?

B: Sorry. It was too hard to control my body.

US: When did you know you were lost?

B: At the end of that trail

US: Which way did you go?

B:Sidewalk ( he had to cross a really busy intersection!).

US: How did you cross the busy road?

B: There was a green light

US: Why didn’t you wait for Mom at the end of the trial or turn back?

B: I didn’t think

US: What did you hope would happen?

B: I prayed that u would find me

US: What’s the lesson you learned?

B: Not waiting is dangerous 

Our hearts are so thankful this evening for the Peoria Police Department who put forth a tremendous effort to find Benjamin and especially for a God who heard the prayers of a lost boy and his distraught parents and grandparents.

 

Benjamin has started some informal ‘counseling’ sessions at school where he talks about something positive for the week and something that is concerning him.  I think it benefits both him and the school staff (as they are getting to understand him more).

He is very adamant that he wants to be treated like a teenager.  In one of his sessions, he mentioned that ‘everything can be made teenager-appropriate‘ (he works on various life skills because it takes a lot more time and effort for his body to co-operate with his mind).  In his counseling session last week, there was a discussion about the fact that though in his mind he thinks like a teenager and wants to be treated like a teenager, he sometimes doesn’t act like a teenager – dropping to the ground, crying etc… (in his own words ‘learned behaviors’).

Here’s his response that he so furiously spelled on the board ‘You don’t know what it’s like to be without a voice.  So put tape on your mouth for thirteen years and see how age appropriate you act.  I’m still without communication at school so there’s no way else I know how to tell you I need help.  I need way more help  and lots of understanding’.

It was my birthday last week and he wrote me a sweet message ‘Mom, I’m so proud to call you my mom‘.  I told him then ‘It’s me that’s the one that is proud <of him>.’  Way to go Benjamin for truly advocating for yourself and giving us a clear perspective of life through your eyes.

 

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Another first! Tonight we had a family scrabble game.  This is especially relevant too on  Mothering Sunday in Ireland (Happy Mother’s Day, Mom).  My mom, Granny to  Benjamin, just loves scrabble. Along with Jeff, it’s her favorite game.  Her and Jeff are the kind of scrabble players you don’t even bother playing with.  They beat you hands down every time, getting 50 points on one word (like Jeff did tonight).  What a fun experience we had! Benjamin started us off with the word ‘PAVE’ from his tiles, earning 18 points.  He finished the game managing to get rid of all of his tiles so got the remaining tiles from the rest of us added to his score.  He came in second with a score of 112 (it was hard to beat Dad with his 52 points for one word).  So Granny, you better get practicing for when you come visit in April.  Benjamin will give you a run for your money!

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.”