Monthly Archives: March 2015

Sometimes We Just Need to Shut Up

Every other Wednesday, I take my sister to the gym with me.  We have a routine of 20 minutes on the treadmill and then 20 minutes on the bike.  Usually this time together runs pretty smoothly and we complete some exercise while enjoying some time together.  My sister is very schedule oriented. When there is something to be done, she will do it and do it all until it is done whether she wants to or not, because damnit, that is what is on the schedule.

On this particular gym Wednesday, things were not going so smoothly. I was running later than I usually am.  When I got to her house, I suggested that we JUST do the treadmill today since we were running late and I had another appointment to still get to.  So far, she was taking all of the change in relative stride.  There was some slight humming on the way to the gym, but nothing major.  When we pulled up to the gym, the bracelet she had made at her program that day fell off. As she tried to retrieve that and her ID for the gym, her scarf fell off. The humming got a little louder.  We got into the gym and the very sweet girl at the desk helped Julie tie her bracelet back on (sidenote: sometimes you have no idea how much a little act of kindness like that goes for us families!).  We searched for 2 treadmills together and could only find singles, so I set Julie up on one with an elliptical in front of it that I could use. Of course, the TV on her treadmill wasn’t working…of course!! However, she was still doing ok.  I hopped onto my torture device, I mean exercise equipment and about 2 minutes later I heard it. The noise. The noise that Julie makes that I am sure many of my fellow family members are familiar with. The noise that goes through every fiber of your body like nails on a chalkboard.  This noise is so emotionally insulting to me for 2 reasons: 1. Because it is such a tone and pitch of humming and whining and quiet screaming that it’s physically uncomfortable to hear. 2. But mostly because it means my sister who I love so much is getting upset, and I won’t know for sure why or how to help her because she can’t tell me. I turn around and her treadmill has stopped. She must have accidentally pulled the emergency stop button.  By this time, of course the 2 treadmills on either side of her have cleared (hmmm, I wonder why?) so I set her back up and get onto the one next to her. It’s too late. She is beyond upset. She is making the noise, biting her fingers, crying, trying to take deep breaths, shouting  “ I want to stay on the treadmill!!” and responding to every verbal bid I throw her way with a very loud “NO THANK YOU!”

Common sense would say, well let’s just end this activity, right? She clearly is uncomfortable and doesn’t want to do it. She would be more comfortable at home or in the car with less sensory distraction. I would be more comfortable with less eyes casting judgemental stares and questioning looks.  However, you must remember, that no matter what…Julie must finish what was on the schedule. That means 20 minutes on the treadmill. She is no longer hearing my language when I say “let’s just do 5 minutes”, “let’s just be all done”, “20 minutes is all done!” (lie) and every time I talk she responds with “NO THANK YOU!!” This is the point where as a sister I start to panic, I lose all semblance of being the Autism Consultant that I am, because this is not a student or consumer, this is my sister.  And then it hits me…SHUT UP! Stop talking, she is not hearing you and you are just adding more stress to her system. So I pull out my cell phone and open the Memo app and type this:

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I place the phone so that Julie can read what I’ve typed.  She looks at me with wild eyes and says “I want to go Jen’s house for dinner” She stops the treadmill and heads towards the locker room. Oh my God! Phew!  Relief washes over both of us and we head over to Jen’s house for dinner.

I say this in my professional world all the time: Sometimes we need to change the communication mode.   We know that when people with Autism become upset and dysregulated that they can no longer access their language – expressive and receptive. By writing something down, a person is able to slow down the processing necessary for understanding what is being communicated. Spoken language is transient…you say it and it’s gone. When you write something down or draw it out, it becomes static and a person can reference it for as long as they need to process it.

I learn some of my biggest lessons from my mistakes, and Julie has been my greatest teacher.

The Rewarding Unknown…

Like most parents of children/teens/adults with ASD, I struggle (sometimes more than Jayden) with planning new opportunities for Jayden. Knowing your child better than anyone else, you hope for the best outcome but, you always have a Plan B, C & D to be prepared for the absolute worst outcome.
As I am sure many of you can relate, we have missed a number of family functions and other opportunities, over the years, due to what type of day Jayden may have been having. Although Jayden may have had a rough time at a party, the zoo, at a store or in the community, we never gave up trying…and that holds true until today. We continuously expose Jayden to familiar and new places, regardless of what the outcome may be. If he had a difficult time today, we take him back and try again.
Continuing to expose Jayden to familiar and new environments/opportunities has opened up many doors for our family to enjoy new things but also, continue to enjoy our very favorite things! Of course, all of this comes with a large amount of planning ahead and don’t forget your Plan A, B, C & D!
On Mother’s Day 2014, I decided to try my luck. Registration would open for the Surfer’s Healing Surf Camp in Ocean City, Maryland. I watched the clock all day to make sure I logged in at the time that they announced registration would be open. This was the ABSOLUTE BEST Mother’s Day gift I could have ever received…in more ways than, at that time, I knew. I instantly received an email back that Jayden was in! I was beyond excited for our boy to have this wonderful opportunity!
For those of you who are not familiar with Surfer’s Healing, in a nutshell, Surfer’s Healing is an organization that holds FREE one day surf camps across the United States, for children/teens/adults with ASD. You can find out more about who they are and what they do by visiting their website http://surfershealing.org/
We chose the Ocean City location, over some others that were closer to us, because it was in August and some others were in September, and we were unsure about how warm it would be by then. So we decided to play it safe and take a chance! I started planning for our trip in May! Typically we do lots of day trips and overnight trips with Jayden, just a few hours away from home or week long camping trips no more than an hour away, just in case. This trip would be roughly 14-16 hours total travel; this would be the furthest we’d ever been from home and in unfamiliar territory. But, we’ve got this!
We booked our hotel, Castle in the Sands, right on the beach where the surf camp would take place, for 3 days, not knowing how Jayden would do. They were very accommodating when I explained to them that we would need a full kitchen because we would be traveling with Jayden’s food, as he is on a special diet and we would absolutely need a bathtub in our room and not just a stand up shower because Jayden is not a fan of showers.
The months leading up to our trip were worrisome, as Jayden increasingly began to struggle with what looked like anxiety & OCD and there were more bad days than good. Many times, I thought about cancelling our trip because of how “all over the place” Jayden suddenly was. BUT, I didn’t! I couldn’t! We’d figure it out (This is where Plan C & D came into play)! We had a plan for every possible scenario we could think up!
Guess what my friends? WE NEVER NEEDED Plans B-D because Jayden did absolutely AMAZING! So much so that we extended our stay, after the 2nd day, for the entire week! From the 7 hour ride there, adjusting to being in a hotel in a city where nothing was familiar, Surfing with the amazing Surfer’s Healing Family, changing hotels in order to extend our trip, to the 8 hour drive home and everything else in between!

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Honestly, I’d be lying if I didn’t say I cried like a baby until we were out of Delaware because of how proud I was of Jayden, how amazing our trip was, and how much we absolutely needed to get away. What a beautiful experience and opportunity this was for our family. The Surfer’s Healing Surfer’s and Volunteers were nothing less than amazing. They were so accommodating and so wonderful to us! We hope to take the trip again this year, even if Jayden doesn’t get into to the Surf Camp! The smile on Jayden’s face while he was surfing and the laughter we could hear coming from him while in the water was amazing. It truly was one perfect day! A little piece of my heart stayed in Ocean City.

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The moral of the story here is, sometimes the unexpected can be extremely scary for us as parents because we work so hard day in and day out to keep our children comfortable, happy and in their routines that they need and that we need! Each of you know what your own circumstances are and just how much you can push your child, and yourself, out of their comfort zone. If you don’t give things a try, regardless of the fear of the unknown, you’ll never know how an experience with your child could change your life forever, in a good way! This was an experience that I will forever hold close to my heart!  10590630_896743813672662_8450223553633980034_n