Copy of media release provided to our family. Photo of release by Ariana
My sweet husband Andy reads each of my weekly posts. After reading last month’s post “So Many Questions,” which was written about the challenges our family had been experiencing trying to obtain an updated and medically appropriate speech device for our son (whose current device has been malfunctioning for nearly a year now), he noted that he knew I had done my best to explain a very complicated issue in one post, but he was worried that many of our readers wouldn’t understand exactly what I was talking about. I find that the above media alert by the Autism Society of Greater Phoenix may make this matter more clear.
We spent seven months alone filing an appeal, filing grievances, and doing everything we could trying to obtain a medically necessary reevaluation for an updated AAC device. After finally being able to receive those evaluation services, two months after the recommendations were submitted to DDD, we still await a response. While we have not sought representation from the ACDL at this time, we may choose to do so if we too receive a denial letter.
Today is February 1st, the deadline for a response from the Division to the ACDL. Like all of the families effected by this, I wait. And I remember what it was like before we were able to start PECS (Picture Exchange Communication System) with Tony, and before he got an AAC device. Hours of meltdowns a day because he was verbally unable to tell us what he wanted. Hours.
I have lost track of all of the things Tony has independently asked for this day alone on his device- a bath, going somewhere else, ice cream, needing to use the bathroom, suckers, tons of different food and TV items….as I’m editing this, he literally just asked for Cars 2. He may not “test well” for many things at this time, but he is full of his own personality and he certainly knows what he wants and thanks to augmentative communication, he’s able to ask for it instead of screaming and smacking his head on the wall in frustration.
I said it last month and I will say it again. In my opinion, whatever policy change is making this process harder for families needs to be reevaluated and fixed, and clearly the ACDL agrees and has become involved for other families. We still remain hopeful we won’t have to walk down that road, but for now, we continue to wait.
*Please note, if you are a weekly visitor to our blog familiar with my posting habits, this is not my main weekly post, so feel free to keep on reading if you have the time… <3 Ariana
Simplicity and I have a very complicated relationship. Sometimes I can be comfortably entwined with something that is stripped down, and others I feel that all of the details of a particular situation are demanding an acknowledgment from me with equal force. Sometimes the way I write about our experiences is just a product of pieces of my personality that no longer have time to find other outlets to dance around in. But today, because I feel like this is a topic too important to bury in my more poetic sensibilities, I am going to wrap my fingers as tightly as I can around the plainest aspects of what I feel.
Tony, Jan. 7, 2020. He looks a bit on the outside like I’ve been feeling on the inside lately, Photo by Ariana
I am nobody
important, and our circumstances are unlikely to ever draw a wide
audience. Being truthful about our experiences leaves me often in
the role of being the “Debbie Downer” of bloggers. But I
remember what it felt like to be buying book after book directed at
parents of special needs kiddos in the early days of Tony’s
symptoms and not seeing our reality represented anywhere in them. So
while I in part write to keep each of you informed, much of what I
say is meant to provide necessary depth and context to other families
who may want it as they themselves are searching for information that
relates to conditions they are just learning about for the first
time.
Ariana, Jan 5th, 2020. All photos by me for this post.
On January 5th,
Andy and I were doing a community safety walk with Tony. I asked
Andy if we could talk about ways to rearrange our schedule to get me
to bed by 7pm most nights, since Tony was often waking up so very
early. There are plenty of credible sources each of you can Google
if you want to see the link between sleep and mental health, physical
health, and productivity. Basically the closer you get to a full
night’s sleep, the better you do in each category. We agreed to
talk about it more in the future, and that day was followed by one of
the worst nights sleep I’d had in the past month because of the
amount of time Tony was awake in the night, delivering up about an
hour and a half only of slumber for me.
I participated in
the parent training meeting we had that morning for Tony’s ABA and
habilitation therapy programs, and then Andy covered me for a very
long nap. He’s off on Mondays, and he provided support for Tony’s
therapy programs while I slept. We spoke together, and he mentioned
that while I didn’t meet diagnostic criteria for depression, he was
worried I would end up there if we didn’t start finding ways to get
me more sleep. I agreed with him (he was right). Sleep deprivation
amplifies the effects of every challenging thing that has been going
on. My honey also made several offers for some responsibilities he
could take over to help facilitate some improved sleep time for me,
and I was grateful.
While I slept, Emily
looked up a study about the effect of Guanfacine on sleep (this is
the med Tony currently takes for his ADHD), and I will be sharing a
link at the end of this post if anybody is curious. The study
accepted participants with ADHD only (no children with other
coexisting diagnoses, such as Autism, were allowed) who were already
struggling to sleep through the night. After a few weeks, the study
was suspended for ethical reasons after the author became concerned
with the additional decrease in sleep experienced by the children
involved after starting daily Guanfacine. This confirmed something I
had suspected, but have honestly been busy dealing with other things
and had not spent time looking for supporting information on. There
is a documented rebound effect that can result in decreased sleeping
for ADHD patients taking Guanfacine.
This is something we
will have to discuss with his developmental pediatrician, but
truthfully Tony doesn’t do well with the other class of medications
they can use to treat ADHD symptoms. Therefore, I don’t really
anticipate an immediate change to what we are doing here. I have
noticed for Tony, he can resume more consistent sleeping a few months
after a dose increase as long as the dose remains stable. The
problem, of course, is that he adjusts eventually to the dose he’s
on and it ends up needing to be raised and we start that cycle all
over again…which is part of how I ended up being turned into a New
Year’s Mombie.
Jan 9
Jan 11
Jan 13
Getting enough sleep those days, the smile almost reached my eyes 😉
What we are doing to modify our schedule really amounts to a Band-aid. Many of the changes we made decrease the amount of alone time Andy and I are able to have, and of course that also is important to the integrity of our family. Ultimately, we will want to look at other things we can do to balance things out so that we can continue to nurture our relationship. Our family and our marriage is precious to us both. These changes to our schedules and the balance of responsibilities are meant to help me find an improved state of equilibrium in the short-term while we look at more long-term adjustments.
Jan 13th public therapy with Tony at Goodwill, Photo by Ariana
Nothing else being
changed about my circumstances, having several nights a week where I
get close to seven hours of sleep has really improved my ability to
feel happiness and peace in the midst of it all. My post “New
Year’s Mombie” was actually written under eight hours of sleep at
a local library.
A few years ago I
read a book from Judith Orloff that expressed, among other things,
her views that our dreams can teach us important things about what we
need to know or do. I agree with this (having experienced it in my
own life) and not too long after reading that book, I had a dream
where I felt just so emotionally dark with the needs of everyone
pressing unrelentingly into me. I escaped into a small tent just
barely removed from everyone but still by myself, and this cool wind
blew through the flaps, carrying away all of that painful emotional
energy. I remembered waking up and realizing this dream was trying
to tell me I needed more time to myself than I was getting.
That is the other
deep need I have that has been largely unmet this past year. For me,
I don’t need to physically be by myself as much as I need to have
adequate space between myself and others, where I am not needed to be
responsible for anything but myself, and nobody is talking to me or
expecting anything of me. On January 11th, I sat in that
library at a large table alone, with a good twenty feet between me
and anybody else, plugged in my earbuds, and turned on my “relax
me” music mix- typing away. After only an hour, I felt like a
fully charged battery.
Jan 15, Tony once again looking on the outside like I was feeling on the inside
Jan 17, right before Tony started getting sick
Part of what is enabling me to have these moments and supports right now is a loving spouse, who cares about my happiness as much as that of our children. That may or may not be an option for some walking this path. And certainly, illness or other circumstances can temporarily throw a wrench into the cogs of any plan. Every night of the past two weeks hasn’t come with all the hours I hoped for in sleep, but it has given me enough to feel like I am mostly feeling warmed by the rays of a more joyful journey. I promise you wherever you are on your journey, all of the things you are going through will feel a lot more manageable if you can find a way to get a bit more of what your body and spirit need.
Screen shot of part of an e-mail I sent to Andy while he was at work, Jan 17, 2020.
The day after I last posted, Tony was up at 1:29 am (been there, done that at nearly the same time, right?). He was bouncing energetically on his bed, and presented in every way as he normally does in the wee hours of the morning. About half an hour after he woke up the second time, I was noticing that his breathing was becoming faster, and he was trying to sniff deeply through nostrils that sounded mostly congested. I brought down the humidifier.
Our sweet son was
moving around still, but with less enthusiasm- and by around the time
Emily arrived he was mostly laying down on the Fuf, clutching a soft
blanket. I began checking his temperature every 30 minutes or so,
and I apprised Stephanie, Cecy, and Casandra via e-mail of his
symptoms. We had a full day of therapy planned that would have ended
with a meeting to discuss our little man’s ABA and habilitation
programs scheduled from 5-7 pm. By 11:15 am, I was having to notify
the team that a fever was now on the symptoms list and everything for
the rest of the day would need to be canceled.
He slept for a few
hours, shivering and mostly refusing to move as his fever was not
fully quelled by the Tylenol I gave him. I had to carry him to the
bathroom most of the day, and he flinched away every time my hands
gently touched his skin. He refused to drink, and I had to spoon
feed him bits of ice cream and popsicles to keep him hydrated.
That, above all, was my biggest fear. Our little man is very
insistent on avoiding things he finds aversive in the moment, and one
cannot count on explanations to garner cooperation- especially in
times of illness.
Anybody working with
Tony for whatever reason has to ask themselves if their goal is to
help him get better or gain new skills or if it is to enforce the
societal expectations that children obediently follow all adult-given
mandates. Unfortunately, anybody working from a more authoritarian
model will quickly find that Tony is more than capable of
refusing any and all requests regardless of what is offered or
withheld for his cooperation. He wants what he wants, and if he
doesn’t want to be doing what you asked…well. Anybody insisting
Tony conform quickly finds themselves in a position of diminishing
results or progress- if not a complete standstill.
My first priority
with everything is to keep him alive, healthy, and to help him gain
skills wherever possible. His emotional well-being is important to
me also. From my perspective the best thing I can do is avoid
turning everything into a pissing match about who is the boss here.
Right now, with the severity of his Autism Tony is not in a place
where he believes that he’ll ultimately get more of what he wants
with more reciprocal cooperation. He’s still focused on trying to
find ways to get everything he wants without having to do anything
he’d rather not. He is more willing to participate with things he
struggles with if they are combined with elements he enjoys, such as
movement and TV breaks. You can get something with Tony or you can
get nothing, and he’ll just as happily hand you the latter if you
insist on calling all the shots and dictating every term.
All of this is even
more important to keep in mind when Tony is sick. We’re trying to
work on weight control because of how the Guanfacine is interacting
with him, but when he is refusing to drink healthier options because
of an illness, I have to fall back to what is my first priority
(keeping him hydrated so he can recover). So that first day he
subsisted almost entirely on spoon-feedings of ice cream, popsicles,
and pudding because he flat out refused everything else.
I instructed Hannah
to wash her hands frequently, hand sanitize as needed, and avoid her
brother if at all possible until he started to recover. I noticed
that my body felt like it was fighting off something, so I busted out
the neti pot, Angela Liddon’s healing rooibos tea recipe, and a few
desperate prayers that my body could shrug this off. I hoped Tony
would sleep through the night, despite his hours of napping.
He’s been doing more sleeping than I’ve seen him do since he was a baby. Tony napping Jan 20, 2020. Photo by Ariana
He awoke, muted and
shivering, at 3:08 am. I went into his room, helped him to the
bathroom, and took his temperature (still nearly 102 F). I gave him
some ibuprofen and Mucinex. The last is a triumph, because it
represents an important bit of progress for him.
On the Friday he
became sick, I braced myself for a complete and total shutdown from
our little man as I attempted to get him to drink some children’s
Mucinex. Hannah assures me the stuff tastes incredibly nasty
(for both generic and brand name). Tony himself did not look too
pleased with the taste. I told him that this medicine would help him
breathe better. Typically, one cannot expect any success getting
Tony to take something that he dislikes even when there are clear
benefits to him.
He scowled at me and
contorted his face, but drank it after only one attempt to knock my
hand away. The dose helped him enough that four hours later when I
asked him if he would take more, he only growled at me and then
popped his mouth open. When he awoke in those early hours on
Saturday, he didn’t even object. He was still scrunching his face
up (I’m guessing he agrees with Hannah about the taste) but
thankfully has recognized a significant benefit to himself that has
allowed him to overlook that.
He would sometimes briefly sit up long enough to ask for a different video to watch, photo by Ariana
By the third day of
this illness, our little man was getting worse, sleeping nearly 20
hours a day and becoming less cooperative with taking any fluids or
medicines. I was having to pause his movies every few seconds to gain
cooperation for small sips, and he was sleeping through most every
video, waking up long enough to request a new one. I am trying to
give him some choices that he can refuse and not compromise his
recovery so that he feels like he has some control. For anyone not
liking my methodology here, I personally consider it to be far kinder
to both his emotions and his health than a hospitalization for
dehydration.
By day four I was
back to having to carry him to the bathroom, and Hannah was sweetly
taking care of a few extra chores to try and help out. We saw the
husband of his regular PCP (who is also an MD) on Tuesday morning. A
secondary ear infection was found, and he elected not to do the nose
swab to confirm flu- a decision I support under the circumstances.
It would not have changed the treatment for Tony’s flu-like viral
symptoms, but would have caused considerable unnecessary distress. I
was willing to go there if we had to, but I am glad we did not.
Tony, this morning, after taking Hannah to school. Tugging on his ear because it’s hurting him. Currently, 4 feet, 5 & 1/4 inches tall, and 94.5 pounds. Some kiddos with Sotos are bigger, but let me tell you that’s big enough if you’re the one carrying him a few stairs to the bathroom 😉 Photo by Ariana
While Tony did try
to push his way out of their lobby twice (he was pretty fearful,
knowing himself to be sick and therefore more likely to be poked in
ways he finds painful) he did cooperate enough for them to get
his weight, height, and temperature. He also allowed the doctor to
look in his ears and listen to his lungs. He would not leave the
pulse ox sensor on, but he did let it be placed on his finger twice.
This is part of an ongoing trend for improvements in his tolerance of
standard portions of medical exams. I was told to report back to
their office if the fever wasn’t gone in 48 hours.
A couple hours after
that visit, I placed Tony in a shopping cart left near our parking
space at the pharmacy, and ran across the parking lot on a mission to
pick up his antibiotic (for the ear infection) as the clouds reached
down to us with misty sprinkles. Tony perked up enough to briefly
half smile at my burst of speed, but still slept most of the day
after we got home. He woke up just after 3 am the next morning, and
I again checked his temp. Finally, the fever was gone.
Tony, 830 am, January 23, 2020. Napping again, but on his way to getting better. Photo by Ariana
Right now as I am typing, he is napping again, still recovering. He has been awake a little bit more of the day (he resumed multi hour middle of the night wakefulness last night also), and is drinking slightly more, but I am still carrying him to the restroom most of the time when he needs to go. He hasn’t gained any more weight during this illness, but he surely hasn’t lost any either. And because he wasn’t wanting to go to the bathroom as much, he was holding in his bowel movements so I ended up needing to give him some milk of magnesia yesterday and convert some of his liquid choices to prune juice, which he thankfully has loved since he was a baby (his first pediatrician had us adding it to his formula because of constipation problems that began in his first few weeks of life). At last this morning he had his first bowel movement in five days, and I breathed a deep sigh of relief.
Managing illness
isn’t easy when a kiddo is this big, this determined in certain
things, and struggles this profoundly with medical
procedures/interventions. We hadn’t gotten his flu shot this year
because the start of vaccine season started while we were dealing
with the side-effects from the Sertraline attempt. By the time he
had fully settled down from that, we had therapy providers on
vacation for the holidays and he was very emotional about that. The
timing never felt quite right to attempt something that can cause him
to have a major flip-out that poses a risk of injury to medical
professionals under even the best of circumstances. Looking back, I
still would have made the same decisions. So I can’t change this
story, and I can’t write it in ways other people might prefer. I
can only work with what is and continue to do the best I can to
navigate and balance everything and everybody’s needs.
Mom Zombie tip #1: distracting others from noticing puffy sleep-deprived eyes with bright colors. Ariana’s New Year’s Eve makeup, deemed to be actually cool by Hannah, Photo by Ariana
Miss R is the sweetest. Our little band of public therapy rompers encounter her sometimes at one of our local Target stores. She of the fabulously sparkly scarf, brimming with kindly energy and enthusiasm, asked me January 1st, 2020 how my day was going. Only after hearing the sepulchral dustiness of my answer, and glancing into the shadowy embers of eyes charred by long days and seemingly limitless nights of demanded wakefulness, did she realize something was off with me. Way off, given how little sleep I’d had the night before. She may have recognized me from prior visits (we are kinda hard to forget sometimes… just saying), but I’m not sure she realized exactly what she was talking to.
As a New Year’s
Mombie, I had climbed my artificially energized corpse (animated by
the power of the caffeine ingested by me) out of bed to start my
workout overflowing with a list of grievances. Knowing I could be in
for painfully scant sleep if Tony woke up early, I declined staying
up until Midnight with Andy and Hannah. They feasted, watched
movies, and lit sparklers while I drug my lame self off to bed warily
snuggling up to a dim hope that I could get at least a few hours of
sleep before Tony awoke at an hour that was often unpredictable, but
predictably prematurely early.
Lots of really bright colors. December 30, 2019 selfie by Ariana
In all of the years
we have lived in our current home, I can’t recall a more active
year with celebrants setting off bottle caps or shooting guns from
about 10pm until Midnight. Every boom and crack jarred me far away
from sleep’s grasp. Sometimes these sound bursts overlapped, and
part of me privately seethed that our neighborhood revelers chose
celebratory activities that showed little thought for those that
couldn’t sleep in late the next day- and that equally betrayed a
lack of awareness of the needs of those members of our community with
sensory differences and acutely sensitive hearing.
Miraculously, Tony
managed to sleep through all of that- even though I could not. Over
the past few years he has become a deep enough sleeper during the
first few hours of his rest that sounds exceeding the volume of his
sleepy time music won’t disturb him. I finally was able to fall
into a shallow sleep shortly after midnight when our local celebrants
finally took their festivities more quietly indoors. However, at 1:28
am Tony was wide awake, the main effects of the Guanfacine having
worn off. Three hours later he stilled himself again in slumber. I
got another hour of rest before the constraints of our schedule
required me to feign wakefulness as best I could.
If all else fails, distract them from your near lifeless state with glitter. Selfie by Ariana
I had skimped and sacrificed everything I could from my workout to make a little more space for sleeping, because over a year of this has started to rip shreds of perceived wellbeing out of my inner calm. But this hour was all that was left to me. When Andy asked how my night went, I assaulted my honey’s ears with my thoughts on all of the outdoors noise makers. He suggested that next year I get up and have a very raucous outdoors New Years celebration of my own around 5am. Sufficiently rested me would never be so petty, but sleep-deprived me howled with laughter, gleefully rubbed her hands together, smirked wickedly, and said, “You know, I might just do that.” Neighbors, you’ve now been warned. 😉
Concealing the appearance of undeath with full coverage under the eyes is a must. Yeah, and try to avoid smiling. It won’t look natural on you anyways as little sleep as you’re getting, and will only make the puffiness more noticeable. Selfie by Ariana.
New Year’s Day was
Emily’s first day back from vacation. Tony was elated she had
returned, and we tried to get through the things we would typically
do, such as public therapy. Our little man was so excited to see her
back, he tried to run off and initiate a game of chase with Emily in
Target so many times I honestly lost track of the point of actually
keeping track of the number of attempts. Obviously, chase is not an
acceptable behavior in stores. Because I don’t want anybody else to
be responsible for anything that should go wrong on these locations,
I will run after him myself (because somebody must
to prevent damage to store goods or others he’s not paying
attention to in his path) while Emily stays put.
Every Guanfacine
dose increase has come with weight gain, and my son is now
approaching 100 pounds. He’s also grown 2 inches in the last 27
days, and at seven years old is nearly as tall as Emily. An hour of
physically blocking and stopping a nearly 100 pound kiddo who is
moving at his maximum speed and force will wear you down if you’re
already inadequately sleeping. By the time we got to Miss R, I was
feeling like I couldn’t even pretend to be death warmed over.
Fellow Mombie, it probably won’t hurt you to make some of these to help reduce puffiness…cut out paper towel half circles dipped in water, frozen, bagged, then applied as needed first thing in the morning. Photo by Ariana
Truly, she is the
sweetest thing…cheerfully asking if Tony liked stickers and if she
could offer him one. She looked puzzled by my answers that seemed
uncharacteristically devoid of life, and I tried to explain what was
going on because I do like her (we’ve been in her checkout
lane before) and don’t want to come across like a total jerk even
if I was feeling more than a bit under-animated.
But, honestly,
unless you’ve lived this… you can’t fully appreciate exactly
what it feels like to be a New Year’s Mombie.
Our Christmas tree right after we finished decorating it, Dec. 1, 2019, photo by Ariana
A couple of nights ago, Andy removed much of our outdoors holiday light display, leaving only remnants of bush netting with lights that might discreetly pass undetected during any roadside scrutiny from the HOA until he has enough spare time to finish the job. Inside our home, three deflated stockings still grace the walls…and one is crumpled on the dining room table next to me as I write. Our still fully decorated tree is rising admonishingly behind the screen of my laptop as my keyboard clicks out a melody not found in the hymns of the season just past. This is, after all, January 9th, 2020- sufficiently removed from both Christmas and New Years to have transformed these elements of holiday cheer into marginally tacky reminders of a schedule stretched far too tightly. If they manage to remain until Valentine’s day, I may really need to hang my head.
All around me then
for the past month or so, I have been seeing The Ghosts of Christmas
Left Behind. Perhaps though I might have needed the visit of
different ghosts than the ones that came, having found lately that my
thinking has been aligning a bit more with Scrooge in that “a bit
of unbroken rest” might bolster my emotional well-being more than
trying to find a way to squeeze my way through holiday happenings.
Ever since Tony started taking Guanfacine for his ADHD, more common
are the mid-nights where he and I are up for 2-3 hours. More than
fourteen months into that, between my generally inadequate sleep and
the year’s other impactful main events, by the time the traditional
mandates of this year’s Christmas season were tapping at my
shoulder, I was feeling far too exhausted to give anything more than
a nod of recognition to the ghost of when I used to enjoy holiday
celebrations more.
Hannah & Ariana putting ornaments on the tree…I’m short enough that I do need to stand on the table to reach the top of the tree. Photo by Andy.
In our family, this
year’s Christmas celebrations were a topic of more discussion than
usual. Andy, Hannah, and I each chose for ourselves to resign our
memberships to our former church. We each understood that any choice
we made would be supported and honored by the other nuclear members
of our small family unit. Tony, being beneath the age of baptism for
that church, was never officially a member, though they did create a
record for him- which was expunged at my request.
While respecting the
rights of others to believe and celebrate as they choose, we all felt
very strongly about what we did and there are some aspects of our
former Christmas celebrations that were directly related to the
culture and expectations of our previous church. None of us wanted
to carry those forward. And still the ghost of certain social aspects
of this did reach out through an awareness of what was missing
secondary to the reactions of others to these resignations. The
chilly fingerings of that past may have aimed to achieve different
outcomes, but instead I will continue to embrace the warm and living
friendships I can still cherish.
Typically, we decorate our tree on the evening of the day we have our Thanksgiving lunch. This year, however, I was too tired and none of this was accomplished until December 1st. We like listening to Christmas songs and having treats whilst we accomplish all of this, but for the sake of gaining Tony’s cooperation we ended up putting on Christmas-themed Super Simple Songs. The treats were shadowy remembrances from previous years that were eaten by my inability to muster enough physical and emotional energy for a complete charge towards the holidays.
Santa Shark, anybody?
I used heavier kettlebells to hold the table in place so Tony didn’t pull it out, which would cause the tree to fall. Photos by Ariana
Hannah lighting the first candle, Dec. 1, 2019. Photo by Ariana
We lit the first candle of an Advent wreath gifted us by my brother-in-law, Eric- and then forgot to light the next candles on time for two of the remaining Sundays before Christmas. We watched an assortment of holiday movies. Hannah and I went to see The Nutcracker by Ballet AZ. That remains one of my favorite holiday traditions, and I am grateful for Andy’s support in getting us there. My honey went with Tony and I for a walk after we got back home, and our little man was more emotional about my absence of several hours and needed a lot of squeezes to calm him down during the walk.
The first picture was taken of Hannah by me when we were headed into the Nutcracker, Hannah took the picture of me while we were waiting for the seating to open up, and the last picture was taken by me and is of Andy giving Tony squeezes to his shoulder on our walk later that night.
I plastered on festive makeup, decorated a gingerbread house with Hannah, and embraced a study recently reported on in the media that indicated people had lower expectations for poorly wrapped presents. I definitely dug in to applying the information gleaned from that study 😉 I went to worship services at First Church the Sunday before Christmas, but did not seek to attend much else of a religious nature. I personally don’t believe anybody’s sermons, however eloquent, hold the key to my eternal welfare at this point and I show up for religious observances only when it works well for the other circumstances in my life.
Christmas Eve
I adore the quote above that was used in the 12/22 sermon: “It is better to light one small candle than to curse the darkness.”- Confucious. Photos by Ariana
I met my good friend Gena for breakfast one morning before Christmas, and we exchanged small presents and our well-wishes for the holidays. I have said it before and it remains unchanged: I treasure our friendship. Her friendship is more than gift enough, but she also gave me a gift card to Barnes & Noble. I got myself a holiday-themed vegan cookbook with that, and I used two of the recipes for our Christmas dinner. I generally eat vegan at this point about 98% of the time. I’m not particularly obsessive about avoiding dairy products at all cost, so I can’t claim to be completely there. I did manage to feel the ghost of excitement in this book for the array of recipes provided that match up with different holiday celebrations. I am looking forward to finding new favorites to rotate through our festivities.
The book, and my version of one of the dishes I made (Black Rice with Corn and Cranberries), photos by Ariana
For Tony, I think I can accurately say he’s distinctly less fond of Christmas. Members of his therapy team often take extended amounts of time off, which disrupts his schedule. I do the best I can to fill in the blanks, working on activities and skills with him, but a change is a change. Tony dislikes change, and wishes it could be a ghost that gets permanently left behind. His developmental pediatrician increased the dose on his ADHD meds just before Christmas, and this seemed to initiate a fresh wave of lengthier sleep disturbances and other challenges that shall be discussed in an upcoming post. I became more deeply tormented by the ghost of a good night’s sleep.
Tony crunching through some leaves and sitting during some of our solo walks, and taking advantage of Miss Emily’s vacation and a distracted mama to make off with a few too many potty reward suckers. Photos by Ariana
Interestingly enough, this is the first year our little man genuinely loved all of his gifts. For his stocking stuffer, I got him a new hand massager. He uses them underneath his chin when he’s trying to calm himself. I wish I could have caught the full light of his initial smile when he pulled it out, but I wasn’t quick enough with my phone. We also got him some super soft blankets, and his laughter rang louder than any bell as he pulled them out of the box and over himself. He was also quite happy with his small digital movie budget for the rest of his gift. I notice what he tries to buy himself on his kindle and then purchase that for him on Google Play. Hannah wishes for privacy about her holiday present experience, but our love and care for her in this and all things will never be a ghost in our hearts.
Tony, Christmas day, opening and using his presents. Photos by Ariana
As the events of this holiday burnt down to ashes and the calendar moved towards New Years, I felt hints of a more complicated collage of emotions that peeked through the sleep deprivation. There was joy that the holiday was more successful for Tony. There was sadness and inadequacy for the things I wanted to get done but didn’t. Hannah and I have already discussed some things she would like us to try for next year. I am hoping those too don’t become the ghost of plans never realized.
Usually nobody in
our community wants to be haunted for any holiday outside of
Halloween, and yet I feel that I was- by the Ghosts of Christmas Left
Behind. There was much to celebrate that remained, but I am hoping
to be visited by future holidays that will feel like more than a
perfunctory enactment of cherished traditions forced past congealed
weariness. Perhaps all that is needed is a good year’s worth of
sleep…
The person whose needs we should be focused on in this situation. Tony, our son, community safety, December 27, 2019. Photo by Ariana
To J.T.
Nearly
7 years ago our family stood before a judge, holding a beautiful nine
month old baby boy who had been our foster son, humble and joyful as
a judge declared we were now legally his parents in every way. Reams
of records can attest: nobody involved with his case then could have
foreseen the path we have thus far walked with our sweet Tony, who up
until that point was meeting most of his developmental milestones. I
have laid far more on the alter of parenthood than I ever could have
imagined being called upon to do. If you have read the posts
of this blog once
every
week, you still see a story that is quite incomplete. I could write
posts of this size every
day of the week and still not have said it all…only, I don’t have
that kind of spare time.
I
will not mince words here. If what happened with the handling of
Tony’s semi-recent AAC application is representative of the
experience that can be had by others receiving AZ DDD benefits, each
of those families deserves better. Nobody is well-served by what we
have experienced thus far. Our families are already living through
challenges many individuals
pray never become theirs without such an unnecessarily arduous
process just to get basic medical needs met.
J.T.,
this matter was being handled by different departments. Technically,
you didn’t have to become involved when I began copying you on my
correspondence…but I am profoundly grateful that you did. Thank
you
for everything you did, both known and unknown, to bring about a
resolution that allowed re-evaluation to proceed without a court
hearing I view to be both highly unnecessary and an incredible waste
of resources that could be better used to provide additional supports
and/or services to other families.
When
I told you our family stood prepared to do whatever was necessary in
this matter regardless of the stress involved to me,
I
wasn’t bluffing. If an
action is
legal, it’s an option I am willing to promise to meet the medical
needs of our beautiful, special little man. Thank you for choosing
to become involved and advocating for a solution that spares
all of us some of the heat that comes with that- and that allows
me to focus a bit more of my attention directly on those who need and
deserve it most. Thank you for seeing my son, and recognizing that
his needs should be coming first in all of this.
Some
Reading to Consider
No
One Is Too Small To Make A Difference, by Greta Thunberg
The
first time I read anything about Greta, it was from reports in the
media a few months ago featuring the quotes of conservative pundits
that I consider to be both bullying and in a way shaming, as they
attempted to discredit the power and accuracy of her statements by
weaponizing against her a diagnosis that clearly has not rendered her
less capable. The young Miss Thunberg, you see, has been diagnosed
with Asperger’s, which under the current DSM falls under the
umbrella diagnosis of Autistic Spectrum Disdorder.
I
then read the transcript of her September 2019 UN comments on climate
change as they became available. I was intrigued and wanted to read a
few more of her speeches. Because I don’t let Amazon talk too much
with our
credit cards anymore, I took a risk and ordered this short book from
a seller on eBay. I found in these pages what I saw in her UN
speech- the words of a gifted writer and fiery orator. Whatever you
think of her views on the science of climate change (and for the
record I happen to agree with her that the science is clear), I
believe people attack her however they can because her words convey
her understanding of the truth with great emotional power. And for
all of those worried that she would be better served going back to
school, Sir Ken Robinson (an international education consultant)
would probably note that devoting her faculties to the demands of our
current educational model would only kill her creativity anyway and
that she is better serving herself and others by following her
passion.
Clearly
the editorial staff at TIME see something in the power of her words
to lead and inspire also…and I have provided links to both their
article naming her person of the year for 2019 and Greta’s UN
speech below. I consider all three to be reading to consider.
This
is a bit more of a technical read, but this is an article I recommend
for anyone wanting to understand a little bit more about the science
behind some of the NMT techniques that
have been
used with Tony. You
can click on the title above for a link.
This
comes with a shorter
bit
of reading and viewing. Emily shared this with me,
and these videos demonstrate
a
clear example
of how the brain’s reaction to an inability to effectively process
and organize sensory input can impact a variety of functions,
including speech. The
first video shows her husband trying to sing along with her before
performing neurorehab eye stabilization exercises. The second video
was shot after the exercises were done, and the difference is
remarkable. I also recommend scrolling to the top of the comments
and text to read the explanation of what is being done and why. You
can click on the title above for a link.
Tony using his AAC device, September, 2019, photo by Ariana
This is a post that is- and yet isn’t- about me. As I contemplated how I wanted to approach writing a bit more about our holidays this year, I knew that what would feel most joyful for some to read would be focused on the superficial aspects. A diorama of Christmas trappings and traditions as they mechanically played out to hang on this blog is only one facet of the reality I have lived this past holiday season. That we all have lived. And yet, one has to look past the performing of the motions and the holiday pictures to find a truth with more dimensions.
Holiday glitter and glitz…pretty, but usually not the full picture. Ariana’s eyes, December 22, 2019. Photo by Ariana
So while I will indeed build a more external diorama for each of you early next month, I decided those scenes would ring with a bit more clarity, honesty, and substance if I first wrote about some of my internal state as I tried to put together one holiday celebration after another the past few months. Now, in all honesty, this would also be far more complicated than I could possibly tackle in one post, so I have decided to focus on one theme that has been playing out for many months now. You may have many questions at this point, and all I can say is me too. Me too.
May 15, 2019 I
submitted an application packet to the Division of Developmental
Disabilities (DDD) for an AAC (Augmentative and Alternative
Communication) device Re-Evaluation. The day before our 16th
wedding anniversary. June 3rd, the same morning Tony is
getting a dental cleaning under sedation, we pick up a letter from
the post office informing us the request was denied. That afternoon I
write our support services coordinator informing her of our intent to
appeal.
Weeks of discussion, research and writing culminates on July 15, 2019 when I filed an appeal that contained statements and supporting documentation from myself, Tony’s speech team, and Stephanie, the BCBA overseeing our son’s ABA programs. On August 9th, 2019 a Notice of Appeal Resolution is written informing us that we have won this appeal.
Part of the August 9, 2019 NOAR for our son, photo by Ariana
Weeks go by, and I have begun asking questions. What is going on? Why isn’t anyone contacting me to schedule an AAC evaluation? Nobody had answers.
On September 27th,
I get a text from Tony’s speech team that they have been contacted
by the AAC vendor who was assigned to provide the services. This
provider group had made multiple attempts to reach a resolution with
DDD representatives that would allow an AAC evaluation to move
forward. I was advised that testing requested in the NOAR as
specified to be performed during the AAC evaluation was not part of
the AAC evaluation process. I was informed that the members of DDD
management involved were maintaining that the NOAR would remain as
written.
Would that block our son from receiving services then, if AAC evaluators could not carry out the terms of the NOAR? Nobody in the valley metro area would complete the services as specified, I was informed. So on September 27th, I filed a grievance with DDD. Two other people connected with this case did likewise. On October 31st, after a month of not getting any feedback as to what was happening with the grievance process when requesting follow-up, I received a communication from a DDD representative stating that she had been informed the matter had been resolved and asking if my son had received services. The situation had not been resolved, and we had not received services.
Part of my answer on October 31st (Halloween), 2019. Photo by Ariana
On November 7th, I receive a decision from DDD that management had reviewed our concerns, that the NOAR was to stand as written and since the NOAR directed we could file for a court hearing if we disagreed with the decisions in it, I was told I could do that if I had any further concerns. Wouldn’t a court hearing increase the cost of providing care dramatically? Why would DDD advise that such an expensive process was the only way to fix a concern for a service everybody involved knows our son meets medical necessity for? If we had met in court, our family would have won…and I think we all know that? What exactly were DDD representatives hoping to accomplish with the initial refusals to fix this outside of a hearing?
From the November 7th communication, photo by Ariana
I continued to communicate back and forth with DDD representatives, including J.T., the supervisor for the Support Services Coordinators. I also reached out to an advocacy group, Raising Special Kids, to see if there was anything else I should possibly be doing differently. Their representative told me I was already doing everything that they would recommend, and that our situation had risen to the level of needing an attorney. I was directed to call the Arizona Center for Disability Law. For family and loved ones who have been reading with us since the beginning, you may recall we’ve been in the position of needing to contact the ACDL once before. Why would the family of a child with disabilities so well documented possibly need the ACDL twice within an 18 month period?
J.T. is the hero of fiscal responsibility in this story, and she will be leading off my gratitude notes next week. After weeks more of continuing dialogue, on Friday, November 22, 2019 I sent a final e-mail advising J.T, Miss J our fabulous Support Services Coordinator, and our speech team that we were officially out of time for a resolution due to the time limits involved for filing a hearing request. I informed them I would be filing the request that following Monday morning.
An hour later I got both a phone call and an e-mail from J.T., who authorized a unit for Tony’s speech team to complete the testing separately that fell outside of the scope of an AAC evaluation. So I put a phone call to the ACDL on hold- for now. The two evaluations sandwiched Thanksgiving- one before, one after. And I wonder…how much money in payroll did DDD representatives and management spend fighting our team for something, again, that Tony met medical necessity for? Wouldn’t it have been cheaper and easier to fix the conditions of the NOAR which effectively blocked receipt of services without all of this?
In this day and age, if anybody were to duct tape the mouth of of a verbal child, they’d be charged with abuse. I find it astonishing every time I have encountered the attitude that any loss of access to an AAC device for even a brief period of time to non-verbal individuals is acceptable. When a device needs repair, a device with the same program should be available to loan. For those actively and demonstrably using their AAC devices for effective communication, malfunctioning devices should be replaced before they completely stop working and that person must face the short-term loss of the only voice they have. I believe any policy which makes access to AAC devices either more expensive or more difficult to obtain for non-verbal individuals also needs immediate re-evaluation.
So shouldn’t I be celebrating? Tony got his finally separated evaluations, but I don’t know. You see, now, we wait. We have been told that DDD can challenge the recommendations of the AAC evaluator, and they have 60-90 days to notify us of a decision. And I wonder…what will the New Year bring us when it comes to this situation? And, will I face retaliation that could make things harder for our family and Tony for publicly speaking about this?
I decided the truth is what matters most here, and I want other families to have that from me. I don’t have a lot of spare time, and certainly I would love to spend what I do have focusing on both of my children- not spending so much of a precious and limited resource fighting this kind of seemingly unnecessary battle. We have been involved in the process for obtaining AAC evaluation alone for seven months. I can put on the glitter and the glitz on the outside, and I certainly have, but instead of tasting cloves my emotions are coated in the grit of soot and smoke. I can look at one picture after another of my favorite holiday looks this season…and note that if you look deeper into my eyes, none of that sparkle emanates from within.
December 22nd
November 29th
December 14th
Thanksgiving
Christmas
Today, December 26, 2019
Emotionally this
holiday season, the truth is I feel more withered than celebratory.
I pick and choose my battles…not everything is worth a fight. If
engaging in a battle for a certain outcome doesn’t serve my son’s
best interest, even if someone is breaking the law and I could win, I
might walk away from that. But a fight for access to his main form of
communication? I will engage in that every single time with a
single-mined focus on success. And if you are the parent of a
non-verbal loved one, you should too.
Tony, running at Jessi’s direction while Hannah chases during a recent NMT session. Jessi is playing guitar at an increased tempo to support his connection to the pace requested, all photos in this post by Ariana
Neurologic Music Therapy (NMT) has had an important role in our son’s progress, helping him to acquire skills he was not able to gain with the other therapy modalities. Tony has been receiving services at NMTSA since July of 2015. In that time, he’s worked with 5 therapists, many of whom moved on to higher paying opportunities. Our current fantastic habilitative therapist, Emily, was the NMT therapist Tony had worked with the longest. When she left NMTSA and took over as his habilitative therapist, our little man (like many families receiving therapy there) experienced a six month gap in music therapy services while their team worked hard to find another qualified therapist willing to work for the lower level of pay necessitated by the DDD reimbursement rates. As we have previously discussed, most music therapy clinics in the metro area no longer accept DDD benefits as the reimbursement rates have been too far below the cost of providing services.
Jessi, NMT therapist
For seven months now we have been working with Jessi, his new NMT. I was thrilled when I found out she would be his new NMT therapist because Tony had worked some with her during her music therapy internship. I knew he would recognize her and that this would increase his willingness to work with her during earlier sessions, which are often a fairly difficult period of transition when he is unfamiliar with a therapist. Jessi has been doing a fabulous job working with Tony and our family, and I love how she speaks to Tony in a way that expresses her confidence in his ability to learn.
Tony requests fruit snacks on his AAC device before every session. He throws away his wrappers and sorts them by color before he eats them.
Playing with beads before NMT
In our first session, she told me that because of the length of the gap in services, she had made a decision to base her current treatment goals on her observations of the first few sessions and Tony’s current needs. I am going to use many of her own words from her October 2019 treatment plan and progress report that was submitted to our little man’s support services coordinator. I will also share some of what we are doing in our sessions to advance Tony’s progress in these goals.
“Neurologic Music Therapy (NMT) is an evidence-based, therapeutic application of music to address cognitive, sensory, and motor dysfunction. It is based on a neuroscience model and its techniques have been developed via data from scientific and clinical research. Its effectiveness is based strongly on the biological mechanisms of rhythm. Rhythm has been clinically shown to prime and organize the motor system, facilitating greater fluidity and control of movement. Within individuals with sensory difficulties, rhythm has also been shown to provide a temporal structure for more effective processing and integration of sensory stimulation. This allows Neurologic Music Therapy to facilitate change at a neuronal level in the areas of cognition, language, and motor learning.” (Jessi, NMTSA therapist)
We work on starting each session by walking different ways to different activities. Squeezes to different parts of Tony’s body are used to help him connect to his body and regulate his emotions.
Currently, the two main NMT interventions being used for our son are Auditory Perception Training (APT) and Developmental Speech and Language Training Through Music (DSLM). “APT includes auditory perception and sensory integration. It is composed of musical exercises to discriminate and identify different components of sound (e.g., time, tempo, duration, pitch, timbre, rhythmic patterns as well as speech sounds). It involves integration of different sensory modalities (visual, tactile, kinesthetic) during active musical exercises…or integrating movement to music…DSLM is designed to utilize musical, as well as related, materials (e.g., singing, chanting, playing musical instruments, and combining music, speech, and movement) to enhance and facilitate speech and language development in children with developmental speech and language delays.” (Tony’s quarterly Treatment Plan, October 2019, completed by Jessi, referencing Medical Coding and Records Manual for NMT; Oliver, S.E., Thaut, M.H., Sena, K.M., 2005)
Tony works at drumming with Paulina and Jessi while walking and while moving on a swing.
Tony’s current NMT treatment goals are as follows:
#1) “Tony will demonstrate increased emotional flexibility and increased adaptability while engaging in activities directed by others for 75% of opportunities…During this quarter, Tony presented with similar behaviors as last quarter that included darting, hitting himself, banging his head against the wall or floor, crying yelling, and pushing his head into his mother’s knees when challenged with switching up his previous routine of activities during sessions. This occurred when he was told ‘no’ or ‘yes, but not yet’ to various activities that he had requested. His mother expressed a desire for Tony to be more flexible…in order to strengthen his overall flexibility throughout daily life at home and in the community…When Tony was engaged in the evidence-based practice of Auditory Perception Training (APT), his self-regulation increased significantly and he was able to engage in activities directed by others.” (Jessi)
Tony practices walking, running, and stopping while going different directions. Sometimes we do this with a body sock, which provides a little extra pressure against his skin that helps him connect more with his body. He will take off the body sock when he is ready to.
#2) “Tony will demonstrate spontaneous use of communication device and/or speech sounds to communicate with others for 70% of opportunities…During this quarter, it was observed that Tony’s communication increased dramatically…His spontaneous communication was mostly executed using his communication device, yet there were many times he would access his voice to indicate what he wanted or how he was feeling, especially when paired with vestibular input. Sometimes when giving a response Tony still had trouble formulating certain phenomes as well as full words…When Tony was engaged in the evidence based intervention of Developmental Speech and Language through Music (DSLM), he used more effort on successfully formulating his phenomes. He also accessed different buttons on his communication device.” (Jessi)
Tony asking to go outside instead after Jessi told him she wanted to walk in the halls. While outside, we practice different types of movement and stopping, as well as drumming when and where requested.
Shortly before this treatment plan and progress report was written in October, Jessi let me know that NMTSA had a volunteer (Paulina) who might be able to join in on some of our sessions. The therapeutic goal for this is to decrease my involvement in some of the sessions so that Tony could further practice generalizing cooperation to others. I asked for a picture of Paulina so that I could help adjust Tony to the idea, and she worked with all of us together for a few weeks. Our next step will be to remove me from the session for about 15 minutes and have our little man work exclusively with Jessi and Paulina.
We practice drumming with different parts (pictured are knee and elbow) of the body to build his motor skills, also up high to encourage scanning. Sometimes other learners in the clinic make loud noises near him that hurt his ears, and he’ll stop whatever he’s doing to cover them when that happens.
Tony actually met his communication goal last quarter, but Jessi decided it would be a good idea to maintain it as-is for the time being as he was experiencing aggression secondary to the brief period of time he was taking Sertraline. This made him more agitated and less cooperative across every therapy setting for several weeks.
Vestibular input from the swing is combined with sensory integration techniques to help increase vocalizations. Tony attempts to say more vocally when he is doing activities that provide higher levels of vestibular input.
This is the part of the power of Neurologic Music Therapy. NMT has helped my son to move from being unable to maintain a stable walking gait and falling dozens of times a day to fluidly maintaining sustained movements in even the most stressful of environments for him (from the sensory perspective). NMT has helped dramatically improve our little man’s emotional regulation and ability to tolerate public spaces. And, NMT is helping to improve his ability to communicate.
Tony will sometimes turn off lights if they are hurting his eyes. Here, he’s getting ready to turn off the light in the swing room. Sometimes he also tries to drum or knock on things that he maybe shouldn’t, but we’re working on it 🙂 Jessi, and sometimes Paulina, wait with Tony in the lobby while I use the restroom after each session.
This is why, in my opinion, failure to adequately fund this therapy modality (thereby decreasing the number of providers able to make it available to anyone who can’t afford to pay the cash value out-of-pocket) is doing more long-therm budgetary harm than good when it comes to funding services for the developmentally disabled. Every skill individuals like my son gain not only increases the quality of life for everybody involved, but also decreases the cost of providing care over the course of many years of what can be a very long life.
I am given to understand that while DDD was able to raise the music therapy pay rate some this past October, the rates being offered still aren’t sufficient to cover the costs of providing these services. As I write this, families of loved ones receiving services through NMTSA still remain uncertain how long they will be able to use DDD benefits to obtain these life-improving services. The board of directors at NMTSA will have to consider many factors, including if fundraising will be enough to offset the difference in what is needed and what is being reimbursed.
Because NMT has brought our family so much hope in the past few years, we wait- and we hope for better news about funding concerns. We honor Jessi and Paulina for their patience, and for helping move our little man forward. And as always, we honor Suzanne for her commitment to do everything within her power to advocate for continuing access to NMT therapy for individuals receiving Arizona DDD benefits.
Tony being more flexible and initiating some variety on a community safety walk, Emily, Tony, & Ariana, photo by Ariana
So much of the gift giving in our communities is concentrated and condensed into days of prescribed celebration. But some of the best presents have trickled in bit by bit this past year, oft ill-wrapped by other circumstances and generally unannounced by fanfare, tags, or cards. Perhaps they are small compared to what some would want, but to my heart the size of a gift has no relationship to it’s significance. Sometimes I was able to capture them in pictures, sometimes not. Some of them must be carried gently for now, guarded safely within until they are ready to be made known. All of them are loved for what they are, not just what they could become.
Tony & Casandra, April 1, 2019
Tony pulling the wagon for others on some community safety walks.
Tony helping to make one of his smoothies, photos by Ariana
Tony helping out with more things, putting the recyclables bin back, taking it out, helping put things in the blender…a little help here, a little help there can add up to a pretty big gift.
Tony & Hannah, photo by Ariana
Siblings who love each other…this picture came from a series of hugs for his big sister initiated by Tony himself. Hannah’s name remains one of the few words he will verbally say out loud.
Tony’s dresser, Dec 12, 2019, photo by Ariana
Can we get a “heck yes” for a little more impulse control? This is a multi-part gift. I fitted Tony’s chest of drawers with latches shortly after writing my post on some of his impulse control challenges (titled “Every Day is ‘Groundhog Day'”). His fine-motor skills have improved enough he can now open all of these latches- in fact, he’s the one who unlatched all of them before this picture was taken- and, he’s only dumped the clothes out once since he gained that skill a few months ago.
Being tickled, Tony & Emily, photo by Ariana
Tony interacting more with others and enjoying more of his time in public.
Tony talking to Jessi with his AAC device using TouchChat HD, NMTSA, photo by Ariana
Tony showing more comfort working with others in public settings, and responding better to them for some safety instructions. He sits with Jessi in the lobby at the end of every Neurologic Music Therapy session so that I can use the restroom. Next week we’ll be delving into more updates on what our little man is working on during NMT.
Painting by Hannah
Hannah enjoying the acrylic paints my schedule has been neglecting for years. There is so much more I would love to share, but I must honor the wishes of our sweet daughter for a deeper privacy at this time. What is pictured is of one of her paintings (which she has granted permission for me to share), but no photograph can ever capture the depth of my feelings- whatever she chooses to do with her time.
Emily & Tony, Orange leaf, November 2019, photo by Ariana
An increased willingness to do more functional tasks in public settings. Someone used to have to wait with Tony while I got his frozen yogurt or ice cream, but now he is willing to help hold the cup, pull on the lever, and stand in line.
Practicing with dental tools in his dentist’s lobby a few days before his recent appointment, Tony & Emily, photo by Ariana
Improved tolerance of some medical procedures and equipment. At this past Monday’s appointment, Dr. B was able for the first time to get a dental mirror into our little man’s mouth with his full cooperation. He will still need sedation for full cleanings for now, but we continue to see improved tolerance that fuels hope for a day when that will no longer be necessary.
Tony stroking the strings on Jessi’s guitar, photo by Ariana
An improved ability to grade the strength of muscle movements. Tony has had a hard time developing enough control over his muscles to touch things with gentler strokes or reduced force, but bit by bit our little man is getting a lighter touch.
Tony walking with J.N. & Emily on community safety, asking for water on his AAC device, photo by Ariana
I am humbled and given more than I can say in each and every one of the fabulous therapists who bless our family with their time, expertise, and patience. Thank you, each and every one of you, for helping to build our son and our family up.
I do not really know
any of the three individuals my gratitude notes are dedicated to this
month, though I do pass by a couple of them regularly when we are out
doing public therapy. Each of them has shined kindness on our
circumstances over the past several weeks as we have worked
diligently to help Tony through the side effects and after effects of
the Sertraline attempt, and in doing so lit indelible words of
gratitude in my heart.
To Sam
from our local Bashas, for standing unasked in the path of the
automated door to hold it open when Tony was scared to pass near the
squealing as it continuously opened and shut on his way to the
bathroom, words are not enough. I rendered my thanks in person a
couple of weeks ago, and your kind offer issued then to help in any
way you could on future visits as long as it didn’t involve running
after him became a treasured moment in these past weeks of tumult.
To Miss Cynthia
from our local Sprouts, who always kindly stops and talks to Tony,
waiting patiently for him to answer before she turns her attention to
others. Very few people do that- you are so rare and so special for
doing so. Thank you for being patient with him every visit,
and especially this last one. We had been doing therapy work
beforehand with him at his dentist to prepare for an upcoming visit,
and he was not terribly thrilled to be cooperating or talking to
anybody. I know we put that patience to the test as we worked with
him to repeat the “goodbye” process until it was as calm,
orderly, and polite as it should be…thank you for treating him so
sweetly through all of that.
To the Kohl’s
cashier whose name I was unable to note under the circumstances:
thank you for opening a register to check us out during what
was probably the worst public melt down (Sertraline induced) Tony has
had in a few months. Those shoes I was clutching were for our
daughter, Hannah, and I was doing everything I could to get us out of
there without leaving her disappointed. I tried to apologize for the
disruption, and you kindly brushed it off, assuring me you had a
loved one on the Spectrum and fully understood. Thank you for helping
me so kindly to keep a promise.
Some Reading and
Viewing to Consider
Nonviolent
Communication, by Marshall B. Rosenberg PhD
As I have noted
previously, I encounter many people who equate communication with the
ability to vocalize. And yet, the delivering up of thoughts via the
spoken word doesn’t guarantee effective communication. I grew up in
a home with communication patterns that were woven by criticism,
attacking, blaming, and shaming. I believe this to be an interactive
legacy many of us have been culturally handed, and this contributes
to difficult, damaged, and sometimes totally destroyed relationships-
even when not a single physical punch is thrown.
What the author
proposes is a communication style designed to increase our awareness
of the shared needs and humanity of those with whom we disagree.
This awareness, he contends, will increase feelings of connectedness
and cooperation, and therefore the likelihood of reaching resolutions
everyone can feel better about. Doing so requires practice in taking
responsibility for our own feelings and in carefully empathizing with
the underlying unexpressed needs of others when we don’t agree with
their initial statements. Something I especially found valuable in
this book were his recommendations for extending this process to the
ways we interact with ourselves. I know I personally often struggle
with being brutal in evaluations of myself in ways I would never
consider doing to another.
Nonviolent
communication involves sticking with observations over evaluations,
expressing ownership of our feelings without putting blame upon the
actions of others, communicating our needs, and following this up
with what it is we are requesting (not demanding) of others. He also
has recommendations for creating an empathetic dialogue even when we
have very strong opposition to the views of those with whom we are in
dialogue.
What the author
recommends is not easy to practice for anyone raised with a different
legacy. I certainly don’t think it will allow for a successful
resolution of every problem, but I definitely agree that it increases
the odds. More importantly, it improves the quality of communication
and even when agreements with others can’t be reached, a higher
degree of respect certainly can be. This is a book I advise buying
over borrowing because the many nuances of his recommendations may
take considerable review to assimilate into everyday conversations.
This is a powerful
talk, and I have personally watched this video a few times. The
speaker recounts the role respectful dialogue with others in on-line
conversations had in her decision to leave the Westboro Baptist
Church, which is a group that has been listed as both a cult and a
hate group by the Southern Poverty Law Center for their extremist
positions and practice of picketing events with signs containing
highly inflammatory and derogatory messages.
Of this process she
says: “we’d started to see each other as human beings, and it
changed the way we spoke to one another.” She identifies four
components of the way others handled themselves in these interactions
that she felt were integral to her ability to hear their message, and
I felt that they echo Dr. Rosenberg’s advice. Her list of four
was: 1) “don’t assume bad intent,” 2) “ask questions” to
understand the other individual’s point of view, 3) “stay calm,”
and 4) “make the argument” (or the case) for your own beliefs.
She states her opinion that this is very important in our modern
conversations, which seem to be increasingly polarized and
tribalistic.
I love her ending,
and wholeheartedly agree with it: “Each one of us contributes to
the communities and the cultures and the societies that we make up.
The end of this spiral of rage and blame begins with one person who
refuses to indulge these destructive, seductive impulses. We just
have to decide that it’s going to start with us.” Every day, I
want to be one of those people. Some days I’m not as good as I
should be, but I find her message to be inspiring and definitely
recommended viewing. You can click on the talk title for a link.
