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 The drive up the mountain side was still difficult. Of course,
I never feel that safe when careening around the tight curves of
the Berthoud Pass. I had hoped the clear summer road conditions
would make the trip less stressful. I was wrong.
As I drove, and kept glancing over to my right side, to see how
my first-time-ever front seat passenger was doing, it brought tears
to my eyes. Tears which I dared not show to him, or all bets would
be off.
He
kept his hand positioned over his mouth with his short fingers
reaching up toward his eyes, in his usual “anxiety position” as
it is known around our house. Our conversation, as it were, was
intermittent, yet repetitive for the almost two hour trip.
“You
did it Brennan! You did your shower all by yourself!”
“Yeah.” was his response.
“And, teeth, ears, and new shoes!”
“Yeah.” he would re-state.
“You’re a big teenager Brennan! Going camping! Just like Buddy & Lizzy!”
“Yeah.”
“We are so proud of you! You get to go to camp for a sleepover too!”
And
so it went. Neither of us knowing what to expect, and both of
us equally anxious. In between our cryptic snippets of
conversation, I kept praying the rosary and thinking back over
how far we had all come, and how incredible it was to think of
where we were headed on that beautiful summer day!
Brennan
has Down syndrome and Autism Spectrum Disorder (ASD). He finally
received the diagnosis of ASD when he was 6 years old. Up until
then, we had no idea why his “Down syndrome” was
so different from all the other kids we had met through the special
education programs, and could not understand why he had so many
transition, sensory, social, and communication issues. It might
seem sad to some parents to learn that their child has an additional
diagnosis, but not for us, we were relieved! It helped us, and
his educational team, to finally understand how we could work with
the ASD to help reach him!
It
is estimated that 10% or more of individuals with Down syndrome
have the co-occurrence of ASD. Having both conditions adds a new
set of challenges, beyond the standard more well-known expectations
of living with a developmental disability, like Down syndrome.
For me, it’s kind of like a disability on steroids!
I
imagine there are many families who have a son or daughter who
are in a similar situation as our family. Maybe their child is
younger, or older. Either further ahead on their journey, or wondering
what to expect and searching for hope. I can share with you that
we have gone through many difficult times, over many years. For
a long, long time, I never thought things would improve, and assumed
we would just remain in the “isolation,” “left
out of life” mode. But thankfully, I was wrong.
It
seems like it happened slowly when I look back, but truly, every
day, week, month, and year, we all keep learning a little bit
more about what types of things helped Brennan come out of his
ASD shell, and help him, and us, enjoy life. At times it feels
like a study in nuances. We pay extremely close attention to any “triggers” that
upset him which could be related to places; transition times; foods;
videos; too much conversation; sounds; people crying; crowds; even
particular individuals, all can make a difference in whether Brennan
will be successful in a given situation. It is kind of like being
a detective of sorts. The important thing is, the more we pay attention
and understand the subtle signs and triggers, the better our chances
are of helping to make a situation work out, and even be enjoyable
for us all. Sometimes, the joy amounts to merely a brief moment,
for instance, when Brennan would say ”Hello” to a friend
of ours after Mass, before he would dart like a bat-out-of hell
to the safety of his car seat. Leaving our friend, and anyone else
in sight, wondering what was wrong with our son, and why we allowed
him to act this way. Ahhh, some people just don’t understand
and wish they could; others don’t understand and don’t
care to.
And so it goes, so many different stories. Some stories were heartwarming,
others were heartbreaking. But on we went. Then today, a day I
had much good reason to dread, turned into one of our proudest
moments.
Today
was Brennan’s annual checkup. For many years, doctor
appointments were one of our worst days. I would sit with him in
the exam room, and have tears well up in my own eyes, as I watched
him struggle to allow a doctor he loved exam his ears, while silent
tears steamed down his face. Eventually, he progressed to repeating
a quiet chant, and less tears, saying quietly “Almost done,
almost done, almost done.” I knew he was always a people
pleaser, and getting upset with someone whom he liked was hard
for him. He hated to disappoint his audience. Overtime, he actually
looked forward to his appointment and didn’t even need to
chant!
Back
to today. It is hard to believe the milestone he achieved. Completely
unexpected, frankly shocking! Let me explain; as many of you
know, with Down syndrome, comes annual blood tests, and with
childhood, come many immunizations. Thus, with both come, needles!!
Well, suffice to say Brennan has an extreme anxiety when it comes
to needles. So extreme that we have needed a team of adults to
hold him down for any and all injections and blood draws for
years! Don’t get me wrong, we tried the more dignified, respectful approach
of preparing both Brennan a little ahead, and the personnel who
would be doing the deed, we tried everything. No matter what, he
would act like a line-backer when the tests began, and would fight
for his life to avoid needles at all costs! He once required the
services of an oral surgeon to sedate him. I forewarned the doctor
about Brennan’s aversion and intense fear of needles. I suggested
that they start the procedure using a sedation mask, and then start
the IV, etc. Well, unfortunately, things didn’t go as planned
and Brennan was chased around the OR like a caged animal. It was
one of the most upsetting situations any of us have ever lived
through with Brennan. Anyway, back to today.
We
went in for his doctor’s appointment knowing he would
need at least his annual blood draw and possibly another injection – I
couldn’t recall. For the past week, as was his usual method
of processing things, Brennan would constantly confront each of
us with incessant queries, “Doctors. No shot. Just looking.” We
would each in turn respond by repeating his words, thereby committing
us no further to the inevitable needle laden experience ahead.
From
the moment we entered the office waiting room engaging the unsuspecting
receptionists, then on to the exam room nurse, and doctor, Brennan
kept up his mantra going,” No shot. Just
looking." Thankfully, the staff remembered from last year
how shots and needles were very difficult for Brennan and played
along with noncommittal responses. Then, the time came. We could
stall no longer. It was decided that we would try to get both the
blood work and injection done while we were at the doctor’s
office. If it didn’t workout, we would try to figure something
else out, during another visit.
First,
Miss Grace, from the office lab, entered the exam room where
we were waiting. She sat down at the table adjacent to us and
talked with Brennan, while showing him her blood-draw basket
full of supplies. I was shocked that Brennan didn’t bolt
as soon as he saw the basket! Instead, he started carefully pulling
random items out of the basket, and asking for their name, which
Grace supplied on cue. (Thankfully, the actual Butterfly needle
she planned to use resembled a dog leash to him, so he didn’t
recognize it to be the enemy). He then unexpectedly asked for a
pair of purple gloves, like Grace was wearing, and proceeded to
clumsily don them. Next he began to play with the bright blue tourniquet,
and following some initial resistance, allowed Grace to wrap, and
then tighten the thick rubber band around his upper arm. Once that
happened, he laid his arm across the table and said, “Shot”?
Grace then efficiently, but not too quickly, cleaned the injection
site, and inserted the Butterfly needle. Brennan didn’t budge.
He didn’t even wince. He sat and watched the blood fill the
first, then second test-tube! When she was done, he even let Grace
put on a Band-Aid! A first! I about fell off the chair! And, as
soon as we finished with the blood draw, as if synchronized by
hidden cameras, in walked Pam, our nurse with the injectable immunization,
hidden in her smock pocket. I thought, well, we got the one done,
not expecting this dream-like situation to last, then Pam and Grace
switched places, and Pam pulled the pre-filled syringe and needle
out of her pocket. Shockingly, Brennan asked again, “Shot?” and
Pam replied, “Just a little test” and worked with him
to allow her to access his upper arm, which soon had also received
the now familiar alcohol rub cleaning, and Viola! the injection
was over! WOW! What a change!
Brennan, the staff, and our whole family continue to bask in the
moment of this incredible event! High Fives all around for the
rest of the day! To think, something I had seen Brennan grow increasingly
more resistant and intolerant of year after year, actually resolved
for him today at 2:08pm, July 29, 2009, at age 16!
It
has been one of those special years that we are still pinching
ourselves over. As I began my story, with the long mountain drive,
leading us to a five-night-sleepover camp, Brennan’s first
time ever sleeping anywhere but with us, two hours from home, knowing
Brennan would be with people he had never met before, who didn’t
understand his minimal use of words and sensitivities and routines,
I had my own anxious thoughts! I worried that he would run away.
Would the Life-Care tracking system bracelet help us find him,
or would he have a meltdown and be left inconsolable? Any one of
a million awful scenarios, but instead, I kept driving and praying.
When I said goodbye to him, it was with some tears, but mostly
good feelings as I turned the car around and headed toward home.
I knew that the staff was well informed, experienced, and showed
a great interest in Brennan right away. I now had to let him go,
to discover if he was ready to handle this level of independence.
It was scary and continued to feel very strange all week. But each
day when I called, I could tell things were going well and that
he would be fine.
Saturday
morning pick-up arrived and I found him laughing and enjoying
the company of his camping peers and counselors, as they handed
out their camper awards. Brennan was so proud to tell me, “I
did it Mom! I did it! Camping!”
So
to all the families who have sons or daughters who have both
Down syndrome and ASD, you are not alone. There are definitely
challenges, but so much joy, too. I hope you will join other families,
caretakers, and providers who share this common bond through the
support of the DS Autism Connection listserve. There you can share
your stories, insights, struggles and joys with others who understand
and can relate. To receive an e-mail to join, please send us an
e-mail to familyprograms@mhdsa.org.
Sincerely,
Margaret Froehlke
Executive Director
Denver Adult Down Syndrome Clinic
Mother of Brennan |
