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
OR http://welcometothefragilexneighborhood.blogspot.com/______________
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/
I LOVE this post!! For so many reasons!!! Thank you Cindy!
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