Sunday, March 1, 2015

Success Can Be Measured in Baby Steps (and long stories)


We never found a church we liked when the boys were young, so we never got in the routine of going.  It fell to the bottom of the priority pile.  Why is this significant?  Well, we haven’t had too many opportunities to expose Jake and Joe to the idea of dressing up in church-like clothes!  We also didn't challenge them to attend formal dances during their school years.  I have no idea why, except that it would require us as parents to make it a priority and to spend a wad of time making it successful.  Don’t get me wrong, we HAVE made other things a priority, and our sons HAVE been successful at many things, just not these.

It’s not easy to say that because when one realizes that each of our sons was born with a developmental disability called fragile X syndrome, one knows that being successful at anything can be a challenge.  But, they've done it.  If you need more proof, feel free to read about our life in my book, “Becoming Mrs. Rogers” (click this link for info or to purchase http://www.amazon.com).  There you will find evidence of many years of learning, years of trial and error, and finally, successes.  Dressing in a suit and tie was not one of them.

I received an e-mail on February 5th, giving details of an upcoming event specifically to celebrate individuals with disabilities over the age of 16.  It included a link to the sponsoring church’s website, which gave specific details for the event called “SHINE” on Friday, February 27th.  I clicked on the link that showed a video of last year’s event.  I watched intently taking note of the immensity of this gigantic night!  Knowing that we have been able to use videos to help prepare Jake and Joe for different kinds of transitions in the past, made me think how brilliant it was of this church to post one!  There was a live band, performers of every kind, photo opportunities, free prizes such as hats and glow sticks, food, snacks, and games.  Just watching it on video gave me anxiety to even think about the possibility of Jake and Joe attending.  I began to roll over the images again and again in my mind.  The logistics of even an attempt at Joe, especially, taking part in such a supposed-to-be-fun event caused me to take a deep, labored breathe.

If you have never known someone with a developmental disability, particularly fragile X syndrome, you might not know how difficult transitions can be.  You might not also know that strange places, strange people and strange or unfamiliar activities can be hard…..even terrifying for them!  I knew this.  Even things that most find simple, like new clothes or shoes, can be extremely hard!!  Jake, our oldest, can be persuaded…but our youngest son, Joe….not so much.  His own body prevents him from taking part in some opportunities that others would find fun!  He will watch from a distance sometimes, but become outwardly upset because (we speculate) that he really WANTS to do them, but physically cannot.  His face will turn red, he will verbally begin to perseverate using words such as, “No!” or the ever-popular, “Scared”.  We have tried, with the help of experts, to provide him with the skills over the years to allow him to self-cope.  Doing this has not been easy, but it’s surely been worth it.  Over the past five years or so, we have seen him take part in several new and exciting experiences.  Read my other blogs to gain further perspective

I decided to talk to my husband, Chris, about his thoughts on attempting this party.  We talked about the fact that neither of the boys had any dress-up clothes so I would need to procure those.  Small details.  We agreed that this would require us both to operate in the standard methodical approach.  We would need to plan the day of the event carefully, and prepare the normal visual schedule to inform the guys on what was going to happen.  This was our normal daily practice, so it would not be new.  In fact, Jake and Joe use a visual schedule every single day at home and at work.  From past experience, we knew that the event would be totally unfamiliar to them, and that the environment (the church) would be a new one, too, so anything we could do to prepare them would go a long way to making it successful.

We talked about what the next step would be.  I suggested that we talk to the guys about it, too, to include them in the discussion.  They are adults after all!  We could show them the video and ask them if they want to go.  Plain and simple, right?  Right…..So, that evening, three weeks to the day before the event, we waited until we were all seated on the sofa in a comfortable state to pose the question.  I explained that there was a “party” coming up where there would be other “kids” as well as “friends” of theirs, then asked if they wanted to go?  They both answered with a resounding, “Yeah!”  I clicked on the video so that they could see what it was like.  I used key words that were positive words, such as “party”, “kids” and “friends”, but pointed out that all of the people in the video were wearing “party clothes” like a jacket and tie.  This was a new phrase.  I also noted that there were no jeans and no sweats at this kind of party.  Chris reiterated what I was saying.  The boys listened and watch intently.  Then, I asked if they still wanted to go?   In a much softer tone, they both still said, “yes”.  I let them know that I would put the date on the visual calendar and we let it rest for the remainder of the night.

The next day, I set out to work.  I went to a discount department store and guestimated on sizes for slacks, button-up shirts and jackets.  I even bought two ties; one bow tie for Jake and one regular tie for Joe.  I had no idea if we would even get the ties on them.  Then, I returned home and created a visual schedule that included a practice try-on each weekend for the next 3Saturdays, and then added a picture of party on the 27th.   

The next day was Saturday and I was ready to have both boys try on the clothes I had purchased, hoping that they would fit based on my guesses.  Jake was first, and easiest.  He was excited about the “party” and said that word often.  I asked him if he was ready to try on the new “party clothes” I had hung in his room the night before.  He said, “Yes!”  The whole process took about 10 minutes from start to finish, with the pants being way too long, the shirt being way too big, and the jacket being too small.  I made notes and rehung the clothes for return to the store.

Later in the day, Chris and I double-teamed Joe, asking if he was ready to try on “party clothes” (the new term we had adopted to differentiate these garments), pointing to the visual schedule as a reminder.  He, on the other hand, said, “No!” shaking his head fervently and exhibiting a shivering lip, which was never good.  Chris and I remained calm, showing him the visual guide and reassuring him that after we tried on these clothes, he could put his sweat pants back on.  He was not convinced.  He repeated his, “No” and paired it with an, “I scared”.  We reassured him that we were here and he was safe.  We waited.  I said that I knew he wasn’t ready, but that when he was we would help him try on these “party clothes” and then we could replace the sweats.  He bit his own hand.  This is always a negative sign, too.  Chris and I looked at each other and motioned to remain silent.  We relaxed.  We waited.  Time ticked by with repeat phrases and repeat responses.  After a few minutes, tears were added to the mix.  There had been no progress in even removing the sweats in order to try the slacks on.  I stepped further back and Chris remained the central force.  Chris asked Joe to stand up off the bed so he could help get the sweats off.  Joe complied, but hesitantly, still crying softly.  Chris reassured that he would help and that Joe was safe.  Chris held up the slacks.  Joe sat down, now just in his underwear.  Chris asked him to lift one foot.  Joe did.  Chris started to slip one pant-leg of the slacks onto Joe’s leg.  There was a bit of hand-biting.  Chris put the second pant leg onto Joe’s other leg.  After several minutes, Joe finally stood up so that the pants could be pulled up, but as soon as that happened, the tears resumed and Joe fell backwards onto the bed like a mummy.  It was like a wrestling match in slow motion.  Chris simply attempted to button the top of the pants and then realized that the pants were both too small and too short.  Off they came!  Sweats were replaced and all was right in the world once again.  Total time elapsed:  50 minutes.  Chris and I breathed a sigh of relief that step one was done.

Jake’s level of excitement was so positive that I decided to take him with me back to the store the next day.  He waited so patiently as I chose items to try on.  We went together to the fitting room, and he tried on 3 pairs of slack, 2 shirts and 2 jackets.  He was set up with the full outfit, and looked so incredibly handsome.  One down, one to go.  With the notes I had, we purchased everything needed for a second trial run with Joe at home, too.

The following Saturday was try-on day #2.  This time, Chris attempted the pants a second time.  I listened from an adjacent room so that I could gauge the outcomes.  I heard minimal grumbling and verbalizations, but the slacks were on, confirmed to be the correct size, and sweats were replaced.  Success on a small scale!  Total time elapsed:  15 minutes

Another entire week passed and it was time to proceed with attempt #3 which hopefully, would include the button-up shirt.  Again, Chris flew solo, waited, and after a mere 5 minutes, the shirt was on, but not buttoned.  Joe expressed his dislike quickly, so we complied.  Chris held the top button closely just to make sure the fit was appropriate, and it was.  Big sighs were all around.  The following Friday would be “P” (for party) day.  We agreed to say nothing the entire week so that any anxiety would be abated.

In the meantime, I had a meeting with our favorite experts, Tracy and Mouse from Developmental FX here in Denver, Colorado.  I mentioned our journey through this experience, and they suggested that we have a transition item ready for Joe to take into the event and give to his friend, Daniel.  The day before the party, I put a DVD of a movie I knew Daniel wanted to see into a large envelope so that it was ready.  Then, I prepared the visual schedules for Friday afternoon.  Here is what it looked like:













No matter how anxious Chris and I were, the day came anyway.  We agreed that we would shoot to leave the house at 3:30, drive 1.5 hours; get to Chili’s and have dinner then arrive at the party a little after the initial start time of 6:00.  That was the plan.

At around 2:30 p.m. on Friday, February 27th, Chris and I were outwardly focused on being relaxed.  The clothes were pressed and ready.  My dress was laid out and ready.  Nothing else could be done to prepare. 

The first step was to show the guys the visual schedule and go through it verbally with them.  I used simple words that were known to them.  Then, I asked if they were ready?  Jake, of course, said, “Yeah!”  Joe simply skipped away.  I was thankful there was no grumbling!  The guys adjourned to the back of the house and began to get showered.  I stayed in the front of the house, but could hear all of the preparations going on.  I played Solitaire to occupy my mind.  I heard Chris talking to Joe about his own clothes, what he was going to wear, and laying them out to get dressed.  Then, calmly, he showed Joe his clothes, reminding him of each piece as it related to the visual schedule (which was also with them in the back of the house).  I heard Joe say, “Cool.”  There was a calm exchange of words going on between Dad and Joe as they talked about each piece of clothing.  Dad was so patient.  Joe would express small words of uncertainty, and Dad would respond with, “You are safe and I will help you.  Let’s do it this way.”  The shirt and tie took the longest.  After a mere 30 minutes or so, Chris snapped this photo of Joe showing his compliance, but not true love:

Chris followed Joe as he passed by me and went on to his computer to have some down time.  Chris looked at me with tears welling up in his eyes, giving me the thumbs up along with a smile of a proud Dad.  I spoke softly saying how handsome Joe looked, and surprised that the tie was actually on.  I could feel tears welling up in my own eyes, but I choked them back since I had already put my makeup on!  I didn’t want my mascara to run!  I smiled and motioned for Chris to look away from me. We both knew the effort it took to get to such a silly point of reward. The final step before we left was to show Joe the DVD that we had placed into an envelope for Daniel.  I said, “Daniel wants to see this movie, so can you take it to him at the party?”  That gave Joe some real excitement!  He grabbed it and headed to the car.

The weather was very cold and cloudy as we drove the long distance to the Chili’s that was located a short 1 mile from the church where the party would be.  The mood was relaxed, but Joe had a bit of flush in his face which meant that he was not 100% relaxed and still harbored some anxiety about the whole night.  I made a mental note of it, but remained calm.  The Host seated us at a booth.  We all sat calmly.  Joe proceeded to open his backpack and get his earphones and music out, which was his standard practice.  We had a leisurely meal, paid and got back into the car.  I did a quick point to the visual reminder so the guys would know what was next.  Joe was verbally anxious, saying words like, “No”, “I’m scared” or “Are you ok?” , all of which were indicators of his uncertainty at such a new experience.  Chris and I both reiterated that Joe had the DVD to take to Daniel.  Joe held it up, and then whacked Chris on the head in the seat in front of him.  We ignored it.  We parked the car and asked Joe if he was ready.  Initially he said, “No”, but shortly after he said, “Ready” and got his jacket on and exited the car.  Jake was more than ready and could not wait to get out and go in.  We stayed together. 

There was a short line waiting to get into the venue.  The process to enter the church was for guests to walk a long, carpeted path underneath a tent that was planked with cheerleaders yelling and waving pom-poms.  Chris and Joe walked quickly ahead of Jake and me.  The temperature was in the single digits outside and everyone was shivering outwardly.  Upon his arrival at the beginning of this procession, Joe immediately began to raise his arm, grasping that envelope with the DVD in it, and whack Chris on the head, the shoulders and arm.  There was nothing I could say or do to assist, but we made it through the line at a record’s pace.  We were finally inside!  The noise level was amazing.  Jake seemed unfettered by it all, but looked left, right and all around.  It was difficult to even stay together with the number of people moving from every direction all around us.  I looked for a spot where we could park and help Joe get himself organized.  There were signs for games, dancing, food, photos, restrooms, and gift bags.  Chris was doing an amazing job of staying calm and alert.  Joe followed right behind him as we kept moving in an attempt to find a spot.  Finally, I stopped and asked someone (yeah, it’s a woman’s job to get directions).  She kindly directed us toward a set of couches where we could just sit and take it all in. 

Chris and Joe were happily placed, so Jake and I wandered all around.  We saw friends we knew and chatted for a few minutes (I did the chatting—Jake just watched).  We stood in line and had Jake’s photo taken (I had to be in it, too) with Batman, or as Jake would say, “Man!”  We wandered back toward the couches and got a thumbs-up from Chris, indicating that they were good, so we wandered on.  Jake wanted to check out the game area.  He had never been to such an active event where there were lines everywhere.  The volunteers that manned each and every part of the event were fabulous.  They were helpful and they knew how to interact with all of the guests.  Jake saw one game booth where there was a “Whack a Chicken”, and he began to laugh uncontrollably at others playing the game.  The object was to place a rubber chicken on one end of a miniature teeter-totter, whack the end facing upward with a rubber mallet, and watch the chicken fly into a bucket!  It was hilarious!!  After Jake’s turn, he wanted to stand back and watch others play and laugh!  A few minutes later, we found another such game, but it involved a stuffed Mr. Potato Head, which elicited the same laughter. 

Chris and I stayed in touch via texting, and after a total of 45 minutes, he texted that he and Joe were heading to the car.  He reassured me that they were ok, but that Joe was “Done”.  Jake enjoyed walking through all of the areas, and finally ended up in the huge area where a live band and dancing was taking place.  He didn’t even cover his ears, which was his normal go-to coping skill.   After two full hours of fun, Jake said “Home”, and we made our way to the exit.  Chris and Joe were warm and comfortable in the car with ties and jackets removed and a DVD playing.  The drive home was quiet and calm. 


Chris and I reflected on the evening with sheer triumph and exhilaration.  We talked about the fact that our goal was getting Joe dressed and in the door for 15 minutes, and he lasted 45.  Granted, Joe didn’t really participate in the festivities, but he met our goal and exceeded it.  Knowing Joe, he took in a lot of facts by just observing and being present—those facts that he will remember later on.  Keeping that goal in perspective helped us feel so proud.  Now we know that he can do it!  Our hope is that the next time this event takes place, it will be more predictable for everyone, and Joe will have less anxiety about the whole thing.  Maybe we can even make a goal for Joe to get into the dance hall where he could enjoy the music that he loves.  Baby steps. 

Chris’ sentiments on the way home summed it all up…..He said, “Next time, let’s take Daniel a pillow”.  Great idea!

To learn more about me, Fragile X and my scholarship fund, please visit my website at http://rogersneighborhoodfxfamilyfund.com/

1 comment:

  1. I LOVE this post!! For so many reasons!!! Thank you Cindy!

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