In 1999, I had decided to gift myself with a college graduation gift. Something that I worked all through college to save up for while working full time and attending college as a full-time student. I had never been away from home, never been on an airplane, never ever broke away from my own personal comfort zone of what was familiar, easy and safe. I booked a flight to Maui - for reasons to this day I can't even tell you. Maui wasn't a life-long dream. I wasn't running from or trying to escape anything. It was almost as if I blindly pointed out a destination on a map and chose it. An eight-hour flight later, with palms so sweaty that I thought I was going to literally fall out of the sky to an early death, I landed and was greeted by a lei of welcoming flowers, bright sunshine and a soft breeze.
There were things I pushed and dared myself to do - like drive the road to
Hana. Which is an insane road, even for an experienced mountain driver
like myself, but it took me to some of the most breath-taking
destinations. Black sand beaches, water that swelled red with shrimp,
beautiful and peaceful cemeteries that I walked through, high cliffs and
the ocean that I had never ever seen before. The bluest of the blue
that just went on for what looked like eternity. I learned to love the
stripped down version of myself there. I went without make up, my
naturally curly hair completely untamed, wild and free from products and
hair accessories, my dress attire simple Hawaiian sundresses. I had my
first Mai Tai drink and went to a traditional Hawaiian Luau. I did all
the tourist kinds of things like a dinner boat ride, submarine
exploration, and found myself emerged in a freak wave from the ocean
while attempting to build a sandcastle in the sand like a small child. I
lost a flip flop, and the beach chair from the hotel that all went out
to sea, and learned sometimes when your back is turned that you can get
hit by the biggest wave when you least expect it.
Yet, with all the things I did, it was that banyan tree in Lahania, Maui
that perhaps gave me the biggest lesson of all. It's this incredibly
massive tree with branches that are just endless. The tree's canopy
spans a quarter-mile, but it's base perhaps the most intriguing.
Buddhists refer to it as the "tree of enlightenment.' The banyan
tree is majestic and strong and
represents personal growth and wisdom. Through life's experiences your
roots get driven down deeper, and you become even stronger - stronger
than you ever thought you could be when you were simply starting out as
that small tiny seed. When I touched it, it was like the tree was
schooling me. I sat there in awe of it's enormity. Yet, in hindsight I
hadn't a clue what it was trying to tell me at the time - I just was
allowing it to record it's message into my
soul, so that I'd be able to replay what I needed at a later time.
couldn't have imagined or predicted at that time where my life would
lead me. I certainly wasn't given any warning or preview into the
future, but the tree did tell me I'd have to be strong. Oh, so strong.
That much I understood about that experience. Perhaps for the average
college graduate it would have been just a vacation, but for me it was
building upon the foundation and strong roots that already existed
within. I came back both different and the appearingly the same. But
I've never left everything I felt or those lessons behind.
There are countless times once you become a special needs parents that you
have to exercise being unpopular. Times when you have to have the
bravery, courage and strength to be your child's advocate and champion
in all things. You cannot take the path of least resistance - even when
you may want to. Finding your footing the equivalent to realizing how
deep your roots are planted and just how strong your branches are. You
can't look back on anything with regret, because the focus is always
and forever the best interests of your child.
It is often very difficult to find quality therapists - especially the
older your child grows. It's almost as if therapists prefer to wash
their hands of children once they get to a certain age in childhood and
express to parents that their child has no more potential to progress.
In reality the their jobs indeed do get harder, just as our jobs as
parents get harder as they grow. There is more lifting required,
sometimes limbs stiffen more, children's over all tolerance may vary,
and it's not as easy as it is to work with a three or four year old
little cutie. What I call therapist abandonment happens frequently and
for a variety of reasons.
I had such an abandonment today in fact. In the course of four years
Noah has gone through six speech therapists. It's a type of therapy that simply
doesn't have therapists that have a longevity of their profession.
Many leave and move onto jobs in public schools, or resume furthering
their education, leave to become instructors, some have complete career
changes - turn over for speech therapists is uniquely high - higher than
both physical therapists and occupational therapists combined.
Finding a therapist - a good therapist that is skilled and proficient in
AAC communication is very hard. Most therapists may briefly touch on
those things, but unless your child has a mild speech impediment, or
needs to learn sign language your options for AAC therapists are super
small. Three years ago, Noah's then speech center no longer had an
in-home therapist willing to drive to our area and we were transferred
to a "sister company."
It was evident that the our first therapist with the new agency was new
both to her job and profession and lacked that employment spark and
interest and made it known that the job was a stepping stone and resume
builder for her attempts to further her education. Half-way into our
year with her she told me that Noah wasn't making significant progress
and that it wasn't worth the investment of her time and asked me to
invite the owner of the company to come along to one of Noah's sessions
so she could show that Noah was making no progress. I should have
kicked her to the curb then for having little faith in my child and
should have had the backbone then to speak up and tell her that it was
indeed her shortcomings of knowing how to work with children an AAC
devices, yet I consented to the meeting which years later turns out
wasn't even the owner of the agency - in fact to this day I have no idea
who her companion was that she was demonstrating that Noah had no
capabilities in AAC communication to, even though he had and was using a
device for some time.
She eventually decided to pursue a master's degree in Georgia and I was
relieved that I didn't really have to address her lack of confidence in
Noah and his capabilities.
You always hope you will get an upgrade when
any therapist moves on to something else. But my hopes were quickly
dashed when her replacement worked at a local college as a speech
pathologist instructor and made it known that she had little time for
Noah. In fact, I was lucky to see her once monthly, even though I know
she continued to bill Medicaid for weekly visits and was thereby
committing fraud. She hated Luke, and demanded that I have him leave
the home while Noah did therapy - something that was impossible. Luke
never caused any trouble but she did not appreciate his presence nor his
interest as a sibling. I got in the habit of asking my mother to come
over to play with Luke in his bedroom to pacify her dislike for Noah's
little brother and her unwillingness to allow him to simply watch his
brother's therapy session. I spent eight months asking her to do an
evaluation and trial for a new speech device for Noah only to be met
with continual excuses and resistance for ignoring my continual
requests. The final straw was when she called to tell me she had
acquired PTSD because her neighbor's house had been broken into and she
couldn't see Noah for two more weeks until she recovered from the
I expressed my concerns to the company and at that time was met with
A temporary therapist came into the home to conduct the
evaluation for Noah, complete paperwork and submit referrals. He was a
rather impressive therapist and rare. His eye to detail and willingness
and techniques to draw out the very best in Noah was indeed inspiring.
Yet, sadly a therapist that didn't do home visits and we didn't have
the ability to make the drive to him weekly. He was patient, kind and
understanding and even willing to come to the home multiple times to get
the evaluation completed even when Noah fell critically ill last April
and was out of commission with all therapies for three weeks. He
worked timely, his correspondence and communication with me was
excellent and it was what any parent could have hoped for.
We were put on a wait list of sorts for Noah's newly assigned therapist to
complete school and move to Colorado. I was cautiously optimistic. I
know that freshly graduated speech therapists can be either a blessing
or a curse. Sometimes they're so motivated to learn they succeed and
even do dances around their well-seasoned co-workers, and sometimes they
fall flat on going the distance and really learning their craft well.
I started to experience frustrations with the lack of ability to
program and learn Noah's new device. Which was causing me to download
all of Noah's needs, learn the system on my own, and expect very little
troubleshooting help or assistance from Noah's speech therapist. Of
course there were other little difficulties too, like the therapist
repeatedly holding Noah's eye lids open when he felt that Noah was being
lazy or tired or tickling him. Something that you absolutely do not
want to do to a child like Noah who has a severe sensory processing
The agency's response of Noah's therapists lack of programming skills and
knowledge continued to be reaching out to the manufacturer of the device
instead for tips. Noah's had his new device since July of 2016, yet still
doesn't have any functioning mount for his wheelchair. The agency attempted to make
him one out of spare parts that turned out to be neither safe or secure
for Noah or his device. It could easily tip over and hit the ground if
you so much breathed on it. I asked the agency to help me troubleshoot
with finding a workable mount - knowing that I would have to fully fund
it out of pocket because of Medicaid's low reimbursement rate - but
there were no suggestions or options presented. So I'd spend nights
after Noah went to bed into the early hours of the morning researching
mounting options on the Internet looking at pictures and specifications
to find viable options because I couldn't light Noah's speech therapist
or agency to assist me. I asked for a trial of a couple products that I
felt might be a good mounting match, only for the agency to deflect
responsibility onto Noah's DME who has no experience or contract with
mounting agencies. After two weeks time I hadn't heard back from
anyone, so I coordinated trials on my own within 2 hours time.
is nothing worse than feeling like you're doing a therapists job and not
getting paid for it. I'll have to pay shipping costs both ways on both
devices, submit a credit card to secure a deposit of sorts - and fill
out applications on my own. And I am sure the therapy center simply
didn't want to incur the costs of trials for a client thereby trying to
push responsibilities back onto Noah's DME instead.
Yesterday, I outlined all these difficulties with the hopes that the agency would
step up and say yeah we've kind of failed a bit and dropped the ball and
we're willing to see what we can do better or how to make this better
for you and Noah. Yet, today the response email was we're dumping you
as a client, here is a list of companies you can check out instead, and
by the way we want our parts back that we lent you for Noah's
I'm disappointed of course that was the response and the feelings of the
agency, and I know that there are lots of other parents experiencing
similar difficulties with the same agency because we all talk to each
other - so these difficulties are not isolated to just Noah. I would
have hoped that they took my concerns seriously and didn't take a
dismissive tone or attitude towards it all.
Parents like me tend to
stay in bad situations because we feel like we don't have a lot of
options. There are not many speech therapists experienced in AAC
devices - and as such we're often willing to assume a bad therapist over
But we're doing such disservice to our children when we do that - and to
ourselves. I deserve to have the kind of genuine help that I need, my
child needs support and deserves to not be without a speech mount for
now going on seven months because I can't light anyone's fire to care
enough to get it right. I don't deserve to have to ask for the company
to come out and train me because the speech therapists are unwilling to
learn the device well enough to know what they're doing.
So, Noah is Speechless -
(yes, find the humor in it) because we all need a little laugh to get
through the hard parts. But I'm going to pick up the pieces and find
something better. I know I will - because I have faith that someone will
go the distance for Noah. Someone will be his champion, someone will
care enough to be beyond awesome. And so I wait for that next door to
open. But while I do, I take solace in the strong roots that continue
to drive down even deeper.
"From little seeds grow mighty trees."
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.