Tony & Andy’s mom, Thanksgiving gathering, 11/28/2019, all photos by Ariana
As I begin to write this, some of you are still laughing together, enjoying the gathering Tony and I left behind. He and I were only there an hour, but for a holiday celebration that brought together so many people from our family that is still a remarkable achievement for our little man.
Perhaps some of you
may have guessed this by now, but I rarely enjoy the holidays
anymore. An enormous amount of additional work often goes into
supporting any appearance we make as a family. Vacations require an
even greater effort. Often then, I find a quiet day at home to be
more celebratory and certainly far more relaxing.
Now I celebrate for different reasons. I celebrate because we were there for so long without a meltdown, self-harming, or an attempt to flee. I am grateful so many of you sent selfies so that we could show Tony who he could expect to see. I deeply appreciate that my honey took the time to drive to Kyle’s house and take pictures in advance, making a slide show video with these and the selfies for Tony to watch this morning. I think a huge part of our little man’s comfort was to be found in these efforts to prepare him for what he could expect.
I could throw confetti all over the bouncy house Kyle set up, asking us first if we thought Tony would enjoy it enough to make him more comfortable at their house. Tony absolutely loved jumping around in that. I am very grateful for the tender mercy of an unexpected swing bench Tony could go to when he wanted a little extra calming.
Andy finishing re-positioning my car so that I could leave very early if needed and not be blocked by other cars, photo by Ariana
We arrived in
separate cars so that I could drive home with our son as soon as he
began to feel overwhelmed. Each of you know I didn’t talk to many
people while I was there…but I would have been happy to. Somebody
had to stay with Tony, and since this was a gathering of my honey’s
family, I felt it most appropriate that he should be the one to get
to visit others. Sometimes even holiday gatherings can feel more
isolating that way.
Hannah talking with me while Tony swings, 11/28/2019, photo by Ariana
And, I cannot forget to acknowledge with a great deal of gratitude that Hannah drove with me on the way there to help make sure I didn’t get lost. I’m good at doing that sometimes 😉 My original plan for this week’s post had been to write about other positive developments. However, Hannah has asked that I write more about our holidays. Sometimes that is harder for me because I just feel so worn down by the time we get through them that internally each year I get a tiny bit more grinchy about doing anything outside of our home. “As you wish” though, my sweet Hannah.
In closing out this week’s post about today’s Thanksgiving lunch, I must confess that because so many of you pitched in with pictures, our time at it went far better than I expected. I honestly wasn’t thinking we’d make it more than 15 or 20 minutes.
Tony trying to get through Kyle’s gate because he wanted in the pool, and Tony walking towards my car after asking to leave, photos by Ariana
Maybe in typing this I can see more light than the ones imagined in my mind from the Christmas strands we are soon to hang. I just can’t promise to surrender my holiday “cuddly as a cactus” quite yet. But perhaps in the coming years as Tony continues to get more comfortable with these types of events, I’ll be able to discard it as an old skin of needles I’ve outgrown. Certainly my tender heart has already grown a great deal more than “three sizes” over the past seven years, and that is something I will always be willing to celebrate.
August 22, 2019. Woke up with a wicked ear ache, and yes, my counter really was that messy. Good Morning photo sent to Andy, by Ariana
So, what happens in families such as ours when one of the parents gets sick? I’m going to quote part of an email I sent out April 23, 2017 to a group of friends:
“Hello my sweet
friends, I hope all of you are doing well! I’m slowly getting back
to feeling normal. My cold turned into a nasty sinus infection
because I wasn’t able to get as much rest as everyone else, being
the person who took care of everyone else. I started Monday
thinking, yah [sic], I’m feeling better, because Andy had covered
me for some good rest time last Sunday. Only to feel like my cardio
was too soon, and then when we went to walk Hannah to school, Tony
decided he was done half way in and I ended up carrying him on my
shoulders, and by the time I got home I was thinking. Yah [sic], too
much too soon. I still have a bit of a cough from the stuff draining
into my chest, but my sinuses are actually calming down. And I am
super grateful for the bath soak recipe Kendra dropped off…that
stuff was pretty awesome and it did help. But sometimes, there’s
only so much you can do to hold your system together when the rest
isn’t just something that you get to do.” (written by me
4/23/2017 in an e-mail to some friends titled “All the Little
Things that Aren’t.”)
The hardest times
were at the height of the emergence of Tony’s Sensory Processing
Disorder symptoms, when I was also dealing with some more significant
medical challenges of my own. Andy was in school and working full
time, and we really didn’t have much assistance from anybody. A
couple of meals (less than ten over a four year period) were brought
in when things were at their worst, but for the most part I had to
find ways to help both of our children without supports or days off
spent resting when I was feeling ill. And for some time now I have
been a needed helper for many of Tony’s therapy goals, since most
public work is a two person job for safety reasons and there isn’t
an insurance company in the land that will pay for that.
Rereading one of my favorite authors this last time I wasn’t feeling to great, photo by Ariana
Emotionally, it can
feel pretty dark to have limited options for self care when illness
strikes. Even if I drop all therapy tasks on days when I don’t
feel well (and every now and then if I’m feeling crummy enough I
will do exactly that), I still have to provide a great deal of
assistance to and safety monitoring for our little man and a full day
in bed is almost never on option. Much of the time when I am feeling
unwell, the best I can do is lessen my involvement. I might spend
more time resting in the same room as Tony while I either read or
watch videos on my phone. I will still play with him, help him, and
do less active therapy tasks.
Emily & Tony. He really is working so hard! This is from our recent trip to Ulta and we didn’t even have to run him in 🙂 Photo by Ariana
Of course, everybody knows on-line shopping can be the hero that saves the day in these types of situations, and certainly anybody who knows our family understands that I have a history of needing to do a fair bit of that. So much so, I got called out for it last year by someone who I personally didn’t know but recognized me from my frequent on-line purchases of therapy-related products. Even though Tony is doing a lot better in stores, many of the toys I need for his at home therapy goals aren’t available in our local stores and sometimes one of us gets sick and I will definitely still utilize the convenience of being able to shop with my computer. I find that it can be an enormous help- if everything goes the way it should.
This next bit is a
word of advice mainly for other individuals or parents who need to do
a significant amount of on-line shopping that may be planning to move
into a more publicly visible advocacy role at some point: don’t
get too involved with writing reviews. Everyone else, you still have
my encouragement to write as many detailed reviews as you feel
comfortable with- the home-bound shoppers can be benefited by your
honest experiences with products that you purchased for yourself. But
for the rest of you, please learn a few lessons from my experiences.
Big corporations can accuse you of anything, don’t have to give you
the opportunity to prove anything about your innocence, and can
publicly say whatever they want about it.
Case in point:
Supervisor’s name removed because this person in my opinion was really the only truly helpful person in this entire mess, and did not ask to be publicly named in anything I might have to say about it, photos of printed versions of my e-mails by ArianaScreen shot of the email I sent advising team Amazon that I did not want the promotional credit they offered under the circumstances and to remove it from my account.
Certainly I was a
hot-mess emotionally for lots of other reasons when all of this went
down and it may not have always been easy for me to articulate my
primary concerns outside of the way this matter was handled.
Initially, when Tony started collecting diagnoses, I wanted to
continue to lead my quiet, mostly private and very
social-media free life. As we started to get a clearer picture of
the severity of his symptoms and I began experiencing certain things,
I realized that the time would come when I would choose to become
more involved publicly than I am now in advocacy for disabilities
services. And at the time I received the initial allegation from
Amazon, I had already agreed to let NMTSA use our family’s story as
part of their fundraising efforts and was already in the planning
stages for this blog.
I had plenty of
faults as a genuine customer writing thoughts about our purchases,
but none of my reviews were compensated. Proving I never took
payments from anyone is an easy matter. Our income sources have
looked pretty boring…and none of them come from me since Tony
joined our family. I was not at any point allowed an opportunity to
provide evidence disputing their claims and they refused to provide
me any details as to why they thought I had been writing compensated
reviews. While I had a slew of heavily unsatisfactory interactions
with their team from the customer service standpoint from that moment
on, and I hands down prefer spending my money at businesses who have
fabulous customer service, my main concern was that I don’t have
the resources to fight for my reputation with a business of that
size. And you probably don’t either. I realize this is a story
about what Amazon did, but I would imagine in this litigious age many
large businesses might not do any differently.
A very easy matter. Not only have I never received a PayPal payment in my life, I wasn’t even using it for purchases anywhere during the period of time I was writing reviews for our Amazon purchases.
So, I kept copies (printed and digital) of every e-mail they sent me or I sent them regarding that matter- even the ones following their initial accusation e-mail where I dished up some honesty with a bit of snark. The snark might not always make me look good, but if I said it then I have to own up to it. You never know when any entity will decide to purge e-mails, so I just find it’s best practice of have multiple copies of important e-mails stored in multiple places. So my advise to anybody planning on having any sort of public presence that still wants to write a bunch of reviews of their many on-line purchases is that it would be a good idea to make sure you save all of your own copies of anything that could be important to establishing your credibility.
So yes, on-line
shopping can help families such as ours if handled cautiously. I
still do a fair bit of e-spending when I need to, and while I do most
of my shopping on-line now with Walmart and Target, I find that Jet
and Beautylish really have the best customer service. The part of me
that used to work in retail feels like the types of interactions I
experienced with those two companies ought to be in customer service
training manuals. I’m personally going through enough hard stuff,
the last thing I want as a customer is to be buying so many products
just to have a business feel like I need them so badly they can put
me through whatever they feel like and still retain me as a customer…
so I mentally start skipping through the meadows when a business
really gets it right. Although, to be fair, I have never had a bad
interaction with Walmart’s on-line team, and the Amazon supervisor
who offered me the promotional credit and free year of prime really
was trying to work with me but had no power to give me what it was I
actually needed.
Otherwise, often a
complete day of rest isn’t an option for me and it may not be for
you, but pulling back on how much you do is.
J.N. pointing out a car to Tony that he needed to be aware of, Emily providing support. Photo by Ariana
At the meeting place of Tony’s growth rate, his sensory differences, the profundity of his Autism, his intense impulsivity, and his heavily delayed risk assessment beats the heart of some of my deepest fears for our son’s future. We remain racing against time, have been engaged in every strategy we can think of for years now to win community safety skills before our little man grows large enough for any attempt of force on his part to be successful. Often people like to read a story that ends with skills dramatically above what can be predicted by an individual’s diagnoses- being generally perceived as the happiest, most triumphant of outcomes.
I have never claimed
to be writing that kind of story. Our ending remains unknown, though
certainly I believe and hope for every good thing imaginable for both
of my children. I tell a truthful story that may never evoke joy in
others because within our communities, people often look away from
families such as ours. And I think everyone deserves to be seen.
As we have
been doing all that I can humanly squeeze into my schedule as we
attempt to arrive at a place better than some would predict, I can’t
even begin to crack a whip on the length of this post and humble it
into submission without sticking to the present. There will be
upcoming posts for others who may be on a similar journey that
discuss a little bit more about some of our past concerns and
strategies in this area.
When it comes to
risk assessment and impulse challenges Tony has when we’re out in
the community, he frequently needs to be physically stopped from
doing dangerous things, and he requires constant reminders about what
is safe behavior. This applies to pretty much every way he could be
injured or every single thing/person that he could damage- though he
actually rarely intends to cause harm. He just doesn’t pay
attention to where others are for either panic based eloping (running
off) or attempts to push his way to what he wants.
Last month, I shared
a bit about some of the side-effects our son was having while taking
a newly prescribed medication (Sertraline). One of the difficulties I
have found for Tony is that because routines give him all the happy
“feels,” only a very short period of time performing a new
behavior and he is ready to habituate it. The aggression, increased
anger, and reduced impulse control that came with that medication are
nothing we wanted to hang around, and yet some of those effects did
linger and dramatically increased the difficulty of keeping him (and
everyone else) safe in the community once we pulled him off.
Tony asking for what he wants on his AAC, photo by Ariana
Tony’s a big guy
for a seven year old, so for the time being while we work through
some of these issues within the community two people are a necessity.
We also are still using a metronome on our outings. This is
Neurologic Music Therapy technique to assist him with emotional
regulation and a steady gait, and we are setting it to the beats per
minute recommended by his therapist. We are also using ABA and
functional communication techniques.
We decided some of
what we were seeing was best managed by letting our son know that in
order to be safe on walks, he needs to not push to try and get to
areas he wants. Any sustained pushing of more than five seconds and
he looses the privilege of going on a walk the next day. Our son
loves his walks, so this has certainly been effective (although it
definitely made him incredibly angry the first few days). Because he
does have significant challenges with impulse control, we are giving
him frequent reminders about the behaviors we find appropriate and
the consequences for doing something different. Eventually we will
tighten down our expectations so that any attempt at pushing at all
will cost him a day’s walking privileges.
Nothing we can offer
our son on these walks matters as much to him as getting to where he
wants to go, so I felt it was important for him to understand now
that as he grows bigger, rather than obtaining his desired
destination through force, people will just stop taking him on walks
altogether for safety reasons. We also feel it is important let our
little man pick the directions some of the time.
We have paired this
with a fabulous recommendation made by Chris, who is providing our
son’s speech therapy services. Chris recommended an app for
creating social stories called Pictello (which I purchased for
$18.99) that could be used to provide pictorial walk-throughs for the
routes our little man finds most problematic. We’re going to
expand this for other uses also. As a brief note to other parents of
kiddos with severe communication delays, Autism, or other language
disorders: the automated narration can run the words together too
quickly, increasing difficulty in understanding. I recommend either
recording the words for narration into the story more slowly yourself
or reading it through in such a manner each time if this is a concern
for your kiddo.
A couple screenshots from one of Tony’s community safety route stories, photos by Ariana
Emily and I tested this out first for a route that our son has recently become quite combative about (because it passes by a park he would prefer to play at). We read through the story and pictures three times before starting out. On the walk that followed, I had Emily walk ahead of us briefly to model direction changes our sweet son has been less cooperative about historically. The calmness our son exhibited and the exactness with which he complied were a stark contrast to our previous recent attempts. Though we were already showing him a couple of pictures of starting points on my phone and giving him some explanations, it was clear from the success we have seen by using more developed route stories in Pictello that Tony is more willing to be cooperative if he has additional visuals to accompany our instructions. Obviously, spontaneous directional flexibility would be great, but that is what we are working towards and not where we are at.
Walking past the park calm as can be, turning around to walk home just as calmly, following Emily at the direction changes he likes the least, photos by Ariana
Giving Tony increased opportunities to follow directions from others is important, but when he is having a more emotional period, I work through the more challenging routes first with Emily. She has worked with him directly longer than anyone else on our therapy team right now. Once he’s had some practice with her, we rotate those routes into our community safety work with Casandra.
Same route with Casandra, practicing on following safety instructions and direction changes, photos by Ariana
Another component of community safety we work on is helping Tony to stay in an area like a park without running off. For this trip with J.N., she played with Tony while I stood vigilant for (and ready to block) any attempt to run onto the street. For me, it was intensely joyful to see our little man interacting with so much enjoyment to playing chase on the equipment with someone else.
Playing chase around the gym with J.N. at a local park, photos by Ariana
When Tony does try to run towards something he shouldn’t, if we have the room I speed in front of him and pair my verbal request for him to “stop” with an upheld hand as a visual cue. We are trying to get him used to stopping his own body. Tony definitely understands what “stop” means, but usually the impulse drum beat of “I want that now” drowns out any words of mine.
Tony sitting and watching cars. Because our little man can resist complying with safety instructions, walks during certain times of the year have to be restricted to the coolest parts of the day to avoid burns. Photo by Ariana
The techniques we
are engaged in are slowly helping him to strengthen his impulse
control, but we have to be careful to make sure he is capable of
complying with any expectations we have before we raise the bar.
Otherwise, we are just setting him up for failure, which would lead
to confusion and resentment rather than skills gains. The way he’s
responding to our current increased expectations is very encouraging.
Tony will write his own story with each day that passes, and I will
continue to cheer him on however it turns out.
Not even a ton of makeup can hide the exhaustion this week, selfie by Ariana
My friends and loved ones, I nearly sent out a notice today saying I was taking the next few weeks off so that I could focus on surviving the holidays. There has been so much going on, I’ve been fighting through seasonal allergies that brought the gift of mild sinus irritation… and I am just plain tired. Our holiday schedule is usually overly ornamented without these additional demands on our kleenex supply or the time required for writing about a few of our happenings.
However, as I
thought about all of the things that have been happening over the
past few months and how much I am already behind in writing about, I
decided I was definitely going to continue typing on through the
holidays. Indeed, Chris, Tony’s super patient speech therapist,
hasn’t even made it onto these pages since he started about 10
months ago. We haven’t gotten around to talking about the still
ongoing process we’ve been engaged in for getting a new speech
device approved (we’re six months into that already and the end is
not in sight yet), nor have we gotten into Neurologic Music Therapy
updates. OT hasn’t seen the screen lighting of these pages for
months either. Truthfully, there’s a much longer list of updates I
want to delve into, and things always seem to crop up unexpectedly
that merit a few words.
We’re not starting
out at any of those places yet though. Having opened up last month’s
writings with what it can mean to raise a child with limited risk
assessment or impulse control, I think it is important to talk about
some of the strategies we are using to help keep our little man safe.
Because Tony’s delays in this area are severe, nearly every aspect
of our life is touched by the need for modifications, and this topic
therefore must be spread out over a few different posts. This week I
am going to discuss providing for safety during transportation.
In an effort to
inhibit the length of this post, I am going to limit my explanations
of why these safety measures are necessary as much as possible. This
requires a stripped down statement that asks you to understand that
if we’ve done something, it is because our sweet son isn’t
capable of acting with the level of safety required for car rides to
be handled any other way.
On the most basic level, we have to employ the driver side control button that prevents him from using his window controls. We also need to use the child protector switch on the passenger door closest to him- this prevents him from being able to unlock and open the door while the car is driving or stopped (and both issues are a huge safety concern for our little man). We also have a laminated card that sits in our front windshield that provides Tony’s diagnoses and safety risks for emergency medical professionals should we be involved in a car accident that renders me unable to communicate for whatever reason.
Our family is constantly on the go for therapy or other purposes, and at seven years old, Tony is still in need of a five point restraint system at all times during transit. For families with this need, often the options on the market aren’t cheap. This is a sampling of a few of the car seat offerings on the market:
As you will notice, they are significantly pricier than your average toddler car seat and for at least one of these seats, our son is already near the maximum weight capacity. We ended up testing out a cheaper option with Tony (an adjustable zipper vest harness with seat belt loop) that is produced by eSpecial Needs, LLC. I ordered our first one while Tony was still able to fit into the car seat he was about to grow out of. Please note, the price is different based on size and the current pricing is now slightly higher than what we paid for the same size. Purchasing the vest while he was still able to fit in his old car seat gave us time to purchase a more expensive option if I felt the harness did not meet our safety needs. I say “first” because we have since had to purchase our second about 15 months after that original harness…part of the price tag for having a kiddo with Sotos who grows a wee bit quicker than a typically developing child of his age.
Emily is adjusting the belt through the vest loops
Original purchase order, vest 83.95, tether mount 49, BuckleRoo 11.95
Current order pricing, new vest 152.95
This harness requires a specialized tether mount that clips onto the back of the vest and uses the car seat mounting latches for our car. A seat belt buckle cover is also recommended for children with difficulty remembering safety instructions. These covers, called BuckleRoos, prevent the seat belt from being disengaged unless a key or Popsicle stick is inserted into a small opening at the top of the cover. For our initial order, we only purchased one tether mount and BuckleRoo, as we were uncertain about whether or not the vest would provide for adequate transportation safety. Once we ascertained that we felt like the harness provided adequate protection for Tony, we ordered a second tether mount and BuckleRoo to install in Andy’s car so that our son could be transported safely in either vehicle.
photos by Ariana
Andy and I both went with Tony on the original test drive with the harness. This was meant to ensure that our little man could be kept safe if there was a concern with the vest. We made any adjustments we felt were necessary to the fit of the harness after this initial outing. Having used one of these for about 15 months now, I can say I think they are a great option provided a parent consistently checks to ensure the appropriate fit of the vest. Ours was well made and has held up to Tony chewing on it and pretty heavy use. We are out driving with it nearly every day of the week. Initially, he was pretty upset about the vest because it was different from what he was used to, so he needed to be offered treats to calmly put it on. Now he will grab it himself anytime he wants to go somewhere. If we are parked near a busier street, we may put on the harness in the store, etc. instead of outside our vehicle.
Asked to go to McDonalds, got told “no,” still holding on to the vest
Getting ready to go to the dentist
leaving Orange leaf, 2018
While Tony prefers to sit next to a window, we did have to move his tether mounts to the center seat location because he started smacking the window with his hands. He’s now tall enough that he can reach the window even from the center, though he’s not close enough to use as much force. Emily sits back with him when we are doing public therapy and takes his movie away for a brief period of time when he tries to hit the glass, and this behavior is greatly reduced. Once it has been eliminated for a period of time, we will try letting him sit by the window again. Should his attempts to hit the window resume as he gains strength, we may need to replace the window with something like plexiglass (a durable, see through plastic).
Tony waiting for french fries at Burger King April 2019, shortly before we moved him to the center seat. Photo by Ariana
Self-harming in the
car was a problem that we also used Emily’s help to curb. She
would take away his movie for five minutes after any attempts to do
so as he sat in the backseat, and for the past few months now there
is only one occasion I can think of where he tried to smack his own
head.
As we exit the
vehicle, someone opens the door for Tony, gets him out of the
harness, and gives him reminders for any safety instructions he needs
to follow for the location. When we still owned a minivan, one of
our biggest concerns about getting out of the car were Tony’s
attempts to stick his hand in the door as it was closing. To help
him understand the risks involved with this, I took several pieces of
paper and drew hands, approximating his size and skin tone. I would
then block him from the door and let the door close on one of these
drawings, pointing out how it ripped when it got caught in the door.
I explained to him that his hand also could be damaged if he stuck it
in the door. This is another area where he is doing significantly
better at remembering the risks, because it has been many months
since the last time he tried to put his hand between the closing door
and car body.
I know this was a lot of information just for one area of safety, but for families such as ours, the risks for scrimping on these details is very real…and with far too high a cost from every angle of the issue. Both of our children are equally precious and we do whatever it takes to the best of our ability to keep them safe.
This is a note I am
not even sure how to begin to write. I don’t even live with the
ghost of spare time unless I am blowing off a bunch of things I need
to do (and occasionally I do have to do exactly that or I
would completely loose it with everything that has been going on).
Therefore my sweet and beautiful friend, yours is the only blog I
consistently read each and every week. I mean no offense to others,
but I am stretched so thin I sometimes marvel that my sanity remains
unsnapped. However, because I do read your blog each week, I know you
have been haunted by many struggles of your own and every now and
then you worry that you are failing at things.
I cannot say it strongly enough: you make a difference in many people’s lives, and you have made a difference in mine. A little over two years ago when I began communicating to others about what I was feeling after some of the things I had experienced when I began wearing pants to church to better support and care for our son in that environment, your response left me feeling entirely seen, heard, loved, and supported. You never tried to make excuses for the behavior of others, simply acknowledging that what I said was true- and it was. When you offered to wear pants with me so that I would feel less alone, I cried.
I turned you down because I didn’t want you to be experiencing anything like the most cutting of reactions I received. And even when people weren’t directly turning away from me, sometimes they would react with a mixture of support and questions that left me feeling like they were trying to find me sinning somewhere even if I wasn’t actually trying to criticize your church leaders with my wardrobe choices. I had to look beyond the questions and try to hold onto their intentions when I would get asked if I was taking anything to be that muscular (um, crickets chirping…no) or why I didn’t just wear pants beneath my skirt (trip hazard). I myself am no paragon of reacting perfectly in every moment or to every situation. Sometimes I get more than just one proverbial foot shoved into my mouth, so while those moments may have hurt I wasn’t judging anyone for them.
Thank you for
teaching me so much with the gracefulness of your reaction and just
hugging me close. Thank you for validating my perspective. I know
you are truly a faithful and devoted member of your church, which is
why I felt genuinely heard and seen when you offered to wear pants
with me. I can’t really write about this in a way that can help
you understand what that did for me in that moment, or what it meant
to me to have you say you would always love me and consider me a
friend when I resigned my membership. You are loved my friend, and
you definitely matter.
Tony during our October public therapy trip to Dr. G’s lobby to help prepare him for his visit the following week, photo by Ariana
Updates and
General Commentary
Before I get to my reading and viewing recommendations for this month, I would like to share a bit of good news. We were finally able to get our little man in to see his urologist for the results of this year’s kidney ultrasound, and were told that everything looks so good Tony will no longer need yearly follow up on his kidneys. We are rejoicing, and wanted to share 🙂
The appointment itself was a little bit harder to get him through than I would have liked because his system was still regulating after having been pulled off of the SSRI. We have had a lot going on because of the extra support he has needed through the past several weeks combined with our Halloween season activities. And, to be perfectly honest, I have spent a little bit of time blowing off a few of the less important things I should be doing this past month 😉 So, my reading/viewing recommendations are super short.
This is a healthline article Andy read and found interesting enough to forward to me. I think there are a couple of very valuable points the author makes for anybody struggling with the concept of meditation. While he does leave links to research supporting the benefits of meditating, I love that he points out that there are many different ways of meditating as well as some physical activities that double as a form of active meditation, and that the best method for you is the one you feel comfortable doing. I personally do best with some of the Buddhist and active meditation traditions, but I know people that struggle with either of those. While he doesn’t provide details on the other options he listed, he does give a few links and I find his permissiveness in finding your own way on the subject to be rather refreshing.
The author also mentions that for those overwhelmed by their schedules, even starting with just a minute of meditation can be valuable. I think many of us can find an isolated minute, and that is why I find this article to be recommended reading. You can click on the article title for a link if you are interested.
Mr. Donovan is a musician and educator who experimented with rhythm techniques to help improve his sleep. Hannah and I watched his TEDx talk on the subject together, and I found the techniques to be similar to some of those used in Neurologic Music Therapy. Hannah and I tried out his recommendations, and we both did find them useful in falling asleep. If you are someone who sometimes struggles with calming your thoughts at bedtime, we think this is worth trying. Again, clicking on the talk title will link you to the video.
I’m going to start with a mash up of me quoting myself from my very first blog post once again quoting myself from an e-mail I sent to some friends about the situation which I am discussing today: “I am not here to judge anyone…” but this is something I felt was important to talk about because “…I don’t ever want anyone else to experience what I have been experiencing.” The e-mail I quoted in that initial blog post was sent after privately going Vesuvius about the events I am going to describe today.
I
have to acknowledge up front that for a
few
of my readers there was never going to be a good time for this topic
to come up. Even though I will be describing things as they are and
as they happened, for some had I discussed it before resigning my
membership to our former church it would have been seen as both
disloyal and an attack. In discussing it now many months after my
name was removed at
my
request from
that
church’s
records, some will be more likely to view it as an attack rather than
the
description it
actually is.
Many
of those I love are still members of our former church, and I am
committed to handling these topics with as much delicacy as possible
out of respect to their faith
and
feelings.
What happened below was always going to be a topic that came up here regardless of what I chose to do about my personal membership. And, while I have discovered that individuals will believe whatever they want to about why I left regardless of what I say, I would request that members of my former church reading this bear in mind I would never choose to do what I did simply over the events I will be writing about today, which are relatively trivial in comparison to my actual reasons for resignation.
For Tony, the
worship services for the church our family used to attend were…yeah,
let’s just say things were challenging. I have always tried to be
as respectful as possible about how we worked with him in that
environment, and he was always removed from any meeting or class if
he became disruptive beyond what was tolerated by the congregation.
He really wasn’t fond of the three hours of required meetings,
however, and there was a period of time where trying to maintain his
calm in this environment often necessitated at least 40 minutes or
more on either my shoulders or Andy’s most every Sunday. We used
to take turns walking with him thus in the halls or outside so that
everyone else in the family could attend their designated meetings.
And yes, I did that
in a dress and heels.
One Sunday early in
the summer of 2017, as our little man was trying to flee the
building, the Velcro strap on one of his sandals caught on the hem of
my dress, taking the skirt portion upwards and flashing a gentleman
from the next ward. I am quite frankly not sure who was more
embarrassed.
I decided the only
way to protect my personal privacy and continue to successfully help
Tony in this environment was to begin wearing pants to church. Now,
for many denominations this is a non-issue. Nobody would have cared.
In the Church of Jesus Christ of Latter-day Saints, wearing pants to
church as a woman is culturally taboo in many areas, is usually
associated with the Ordain Women movement, and often viewed as a
direct challenge to church leadership. Either being associated with
the Ordain Women movement or challenging church leadership will
usually instantaneously transform someone into a social pariah in
Mormon congregations. Kate Kelly, one of the founders of the Ordain
Women movement, was excommunicated. Wearing pants to church if you
are a woman, unfortunately, can be a pretty big deal to many of the
LDS faithful.
I knew all of these things, but felt like surely my need would be obvious to the congregants around me and that it shouldn’t be that big of a deal- especially as there is no official church policy mandating dresses. My husband warned me it would be scandalous regardless. That people would be kinder to me and judge me less if I wore a miniskirt to church. We fed the missionaries assigned to our ward in the days leading up to my first Sunday wearing pants, and they also agreed it would be shocking and then fell into stunned silence.
Those of you who are
local know about or have heard first hand accounts from me personally
about what happened in the following weeks. I would ask those of you
in that position to hold the names of everybody involved sacred and
keep them off-line in association with these happenings. I believe
those involved deserve the chance to learn from this and move on
without personalized public excoriation. However, I also must assert
my opinion that nobody who professes to follow the teachings
attributed to Christ should feel comfortable refusing to say “hi”
or turning away in visible disgust because someone is wearing pants
instead of a skirt. While the social backlash I experienced was not
my reason for resigning my membership, for some people it definitely
would have been more than enough to convince them to stop coming.
The lead in picture
says it all. I was quite angry when all of this happened- and as
natural as that might have been, I don’t consider the intensity of
my feelings to be admirable. I had been fighting one challenge after
another for years, and some of the people involved in the events
described in this post had front row seats to a whole bunch of that.
I felt like I shouldn’t have had to explain a thing to anybody,
that it should have been quite obvious I was too busy trying to take
care of our son to foment rebellion of any kind.
Ariana, Tony, & Hannah heading into our former church, January 2018, photo by Andy
Many people far
wiser than I have stated that buried under anger is a seed of hurt.
And I was certainly hurting. I felt like people cared more about
what I was wearing than how I was doing, how my son was doing, how
our family was doing.
All of the people who had vanished from my world as described in my post from last October on “Becoming the Socially Undead” were from this church. I had steadfastly refused to judge anyone for that, but I unfortunately was not saintly enough to avoid the sea of hurt drowning me after the pants kerfuffle.
I felt like if
someone recognized that the depth of Tony’s challenges surpassed
their comfort level to assist with (especially if I never asked them
to be involved in the first place), that’s totally fine, but they
don’t get to vote on anything that I feel is necessary to
wear in the process, much less determine I am spiritually less worthy
because of my attire. Prior to these events, as I was marching
through the halls of church in my dress and heels with Tony
contentedly up on my shoulders trying to chew on my hair, I was
already experiencing a dichotomy where most men wouldn’t meet my
eyes and several of the women would tell me how strong I was.
Being able to carry
Tony on my shoulders was never what made me strong. But doing
so in a dress and heels definitely increased my risk of injury, and I
felt a whole lot of hurt because it seemed to me that some people
were more concerned about whether or not I looked like a faithful
member of the church than that I was able to assist our son more
safely.
As I began reacting
privately and talking to others about the things I was experiencing,
I realized that probably most of the backlash I experienced could
have been avoided if I had taken the time to reach out to more people
in advance. For many individuals in our congregation, an
understanding that I wasn’t actually trying to publicly attack
church leadership made a huge difference in their reactions to
this situation. If there is one thing I could have changed about my
handling of the situation, it would have been that.
Tony & Ariana. Seriously love the sparkle on those Docs! Photo by Andy
Andy was raised in that church, however through every bit of these circumstances he showered me with love, support, and fabulously sparkly Doc Martens- and I am grateful for that. He told me that if people continued to give me a hard time, I should purchase a hot pink Hillary Clinton style power suit for church. As always, thank you babe <3 but I don’t like power suits. Outside of our family, one person from our former congregation truly heard my pain about what I was experiencing and reacted with everything I think a disciple of the teachings attributed to Christ should, and next week’s gratitude note will be addressed to her.
For anyone reading
this who belongs to any sort of religious community, my every hope is
that you would look at the people around you and shower them with
love and support regardless of what they are wearing. Every single
one of us was born unclothed into this world. In that sense,
everything we wear every single day of our lives is some form of
costume shaped by social customs. I don’t think those customs
should ever become more important than what is happening to a person.
Tony & Ariana in a calmer moment during walk #2 after the spectacle that was the attempted and quickly aborted first walk on Wednesday. Photo by Ariana
This week, our story drops through the words of two songs of the same title, spliced and stitched together to help me animate the remaining fragments of my scattered thoughts. My moments this past week have been filled and stretched to the point where my own artistry just may not be enough to bring this post to life in a timely manner otherwise.
“Wise man said
just walk this way…In the eye of the storm, Seek the roses along
the way, Just beware of the thorns…Will you send me an angel?”
(Scorpions, Send Me an Angel) We’ve encountered the kind of thorns
that have people seeking for any kind of salvation. “It gets in
your eyes, It’s making you cry, Don’t know what to do, Don’t
know what to do…Send me an angel…right now.” (Real Life, Send
Me an Angel)
In the age of modern
pharmaceuticals, people often expect the answer to most problems can
be found falling from the lips of a downward tipped pill bottle.
Tony’s one anxious kiddo…everybody knows it. And yes, they make
pills for that. But, most of them aren’t considered safe to be
used in a child of his age…and the ones that are can have lasting
effects on the developing neurology of a child or have side effects
far worse than the original symptoms.
Having a genetic
disorder that comes with accelerated growth (Sotos Syndrome), means
that our son is also larger than most children his age. This
naturally is becoming more of a concern the bigger he gets as so many
of his behaviors are related to his fears. So, at last month’s
quarterly visit with his developmental pediatrician, she recommended
trying one of the two medications that are approved to treat anxiety
at his age.
Some of the side effects that were in the handouts for his prescription, Photo by Ariana
Now, there are some
bigger risks that could come with these medications for him…I have
long known this and have wished to delay trying them as long as
possible for this reason. In agreeing to try them, I was feeling the
bite of the thorns created by his growth and hoping to make things
easier for everyone in our quest to help Tony gain skills.
The first day on the
new medication, he gave an employee a hug at the front of a local
Walmart. Emily and I were stunned- our little man is not usually the
hugging kind even with people he knows very well. This evolved
quickly into days of increasing crankiness and decreased appetite.
As his eating normalized over the next week, we noticed a significant
spike in his hyperactivity, decreased impulse control (Heaven help
us, we certainly don’t need any less of that), and a shorter
emotional fuse that mutated quickly into escalating aggression.
By Wednesday he was
so combative at the onset of a community safety walk, someone from
the neighborhood with a stroller stalled out on the other side of the
street, staring and anxious for several minutes, punctuating her
concerns with very audible “Oh my Gods” as I tried to calm Tony
down and keep him from shoving past me into driving cars. Let’s
just say that entire day was pretty rough…our son ended up
unscathed, I am nursing some minor abrasions and a few more bruises.
I left Dr. D a voice message the very next morning. For any list of precautions the pharmacy sends out, pay special attention to that portion that says not all side effects may be on it. Further research can often give you a bigger list, and for our little man, some of what he was experiencing (such as the aggression) are less common but still documented side effects for this medication. There are still others not included in the two screenshots I have posted below…these just show the additional ones Tony was experiencing that are not on the original pharmacy handout. Some side effects can be difficult to determine for a younger non-verbal child. For example, we have no way of knowing for sure whether or not he was experiencing the headaches that indicate more serious concerns…so behavior dramatically outside of the norm often has to be a guide.
Sometimes, you have
to “just believe in yourself, hear this voice from deep inside…”
(Scorpions) As the mother of this special little guy, I new from his
behavior alone something was feeling very wrong on the inside for him
and felt very confident in communicating to his doctor that this
medication needed to be discontinued for him ASAP. Everyone who
works with our son on a regular basis agrees- he’s generally not
aggressive. Reduced impulse control paired with violent reactions
are far nastier thorns to tangle with than his anxiety.
Two of the very real angels who have blessed our family by helping us along on our journey, J.N. & Emily working with Tony on community safety, Photo by Ariana
As I sit typing
this, for the first day in a couple of weeks our little man is
calmer. Happier. Requesting tickles and to be chased from Emily.
He’s not lifted his hand towards himself or anyone else all day.
Let’s be honest: we need all the help we can get. But for his
anxiety, we know our angel wasn’t to be found in that particular
bottle. Sometimes, no matter how badly you think you may need it,
there’s no such thing as medication salvation.
“But don’t give
up, Don’t give up.” (Real Life) And we won’t.
Yeah, that’s definitely not chewing gum. Photo by Ariana
When I was young, our family often watched reruns of The Twilight Zone. Black and white memories of commonplace scenes twisting through sometimes terrifying deviations floating through the time warp of a 43 year old mind- faces and images frozen in grief or compounding horror.
We are taught to think there is a firm line between fact and fiction. Life can teach us though, sometimes things we believe to be fiction are just facts we haven’t discovered for ourselves yet. Parents of children without risk assessment have a slow awakening realization that they are indeed “…traveling through another dimension, a dimension not only of sight and sound but of the mind.” (Rod Serling)
A dimension where
everyday things become whip cracking ringmasters of fear.
Such an innocent, simple scene…unless you have an older child who puts everything in their mouths. And then, that bottle isn’t safe to be there… photo by Ariana
Staples left out on
the desk or table? No, that’s not chewing gum for most of us, but
for a child without risk assessment that might be how they try to use
it- Tony has. So many things that enhance life if handled safely
when the risks are understood become everyday boogeymen. An exacting
and sanity sabotaging level of environmental awareness is needed to
prevent injury or death every single day in our home.
The facts in our
house are that spooky days don’t just come once a year. We don’t
need pretend monsters to menace…there are 365 days a year of very
real things to fear.
And heavily delayed risk assessment means we get to idiomatically lather, rinse, and repeat for the same items, day after day, year after year. We don’t have any way of knowing how much our son’s ability to retain safety instructions will improve in time and how much will continue to trickle away every day. 365 days a year of things to fear.
Yes, that’s my razor. I took it out for this picture and then locked it right back up. Anybody forgets to lock one of these up and Tony runs to it and immediately tries to put it in his mouth. Photo by Ariana
Shaving razors, shampoos, lotions, soaps. Cleaning chemicals, scissors, and knives. Pencils, pens, chords left plugged in. Metal silverware. Ceiling fans in rooms with pillow top mattresses. Glue, tape dispensers, nail clippers, magnets. I want you to take a moment to think about all of the things laying around your house that shouldn’t ever be put in your mouth and fill in a whole bunch of extra blanks… to save you some reading and me some writing. 365 days a year of things to fear.
The world outside of
our house is crowded with even more terrors, because I can’t lock
things down in stores or other people’s homes. And locks only work
if everyone remembers 100% of the time to put things away and use
them. 365 days a year of things to fear.
Sometimes I think the marriage of poor impulse control with severely delayed risk assessment to acute powers of observation and diversion planning abilities is a nightmare inducing cocktail more potent than any witches’ brew. When everyday tools take you on a journey through year after year of 365 days of things to fear, you watch your peace of mind wither to shadows as your ability to relax gets sacrificed over and over. Any version of me that looked carefree died long ago, bled out in the face of so much required vigilance. It’s like being stuck in a replaying, potentially exit-less loop of a single verse from “Cry Little Sister,” with seemingly “…immortal fear, that voice so clear.”
If the facts of our world look like your fiction, you have no idea what you take for granted… Every. Single. Day. Rejoice, and don’t save up that gratitude to be felt for just another holiday that only comes once a year. Be thankful- every single day- if you’re not living with 365 days a year of things to fear.
When I first texted
Pastor James for permission to bring Tony in to First Church outside
of worship services to help acclimate him to that environment, he had
only met me once and Tony not at all.
To both Pastors- James and Susan- thank you for so graciously supporting our family in this and for showing an interest in learning more about our son’s conditions so that you could provide better support. And, thank you for not revoking your consent after all of the things you could have read from these pages. I am grateful you have always treated Tony so naturally like an equal and waited patiently for his responses. I am also very grateful for your kind understanding each and every time he refused to say ‘hi’ to you. In the past several months I have discovered that this UCC lives up to its mission of being a church of “extravagant welcome.”
I remain uncertain
we will ever succeed in helping our little man become comfortable
enough to make it through any of your actual services, but thank you
for your ongoing support as we try.
Some Halloween
Reading to Consider
Before I go into my reading recommendations for this month, I’d like to take a brief moment to comment on the importance of communities supporting individuals with Autism or sensory differences in celebrating holidays such as Halloween in ways they find comfortable and less threatening. Holidays are meant to be enjoyed, but if a fabric hurts or irritates an individual’s more sensitive skin nerves, being forced to wear that to conform to the expectations of others within the community would not deliver a joyful experience. I wrote about some of our experiences with this last year in my post “This is Halloween…”
Tony drinking a smoothie with this year’s Halloween kitchen table display, photo by Ariana. He prefers less scary stuff, and I do too 😉
The same applies to any other element of Halloween, from visually overwhelming yard displays to crowded and noisy events. We experience commentary for any variation of the cultural norm in how we celebrate this and every other holiday as we seek to accommodate Tony’s needs and wants. Sometimes people think what we are doing is weird, or that we are inappropriately depriving Tony of experiences they love. I think the key is in that last bit… “they love.” Tony does not. He doesn’t like any candy other than skittles or dum-dums. He doesn’t like the crowds. He hates the costumes, and he’s only OK with less scary or less visually overstimulating decorations.
Sometimes this can be tricky when you have two kids with opposing needs and interests. We are handing out candy, but may not trick or treat at all – because Hannah and Tony both would prefer to do that this year. In our home, we are doing themed weekends for treats and movie watching. Multiple Harry Potter films, Hocus Pocus, The Nightmare Before Christmas, and Coco will all get viewings as we move from Halloween into our Dia de Muertos activities. We are seeking to do our best to honor Tony’s cultural heritage with an Ofrenda and traditional foods for that holiday.
When
we show acceptance for the many different ways families of
individuals on the spectrum celebrate Halloween and every other
holiday, everyone can feel the joy that should come with these
celebrations.
This blog post from Arizona Autism United gives many valuable recommendations and preparatory activities to help Autistic individuals prepare for community interactions and holiday displays that typically occur on Halloween as celebrated in the US. The only thing I would add as a recommendation to the advice given is that it may be useful to walk a kiddo through the Halloween aisles or costume stores a few times to help get them used to the types of outfits and the range of decorations they could encounter. I think the advice for going during the daytime is good, but may be harder to implement in some neighborhoods, as work schedules may not allow many people to be home and prepared for earlier arrivals. Even for readers who don’t have a loved one with a sensory processing disorder or Autism, I think this is still very valuable reading because it expands understanding for the range of what can be encountered when the door is opened on Halloween night. You can click on the title of the article for a link.
This is a thought-provoking opinion piece written by a young woman with Autism where she explains her feelings about others who limit what she is included in based upon their own views of what she is capable of enjoying. She reminds her readers of the importance of seeking the input of the individual themselves before excluding based on possibly misperceived comfort levels and capabilities. Again, you can click on the article title for a link.
Our copy, Photo by Ariana
“James
Celebrates Halloween,” by
Carolyn Huston
This book was written to serve as a social story for elementary school aged Autistic children. Many components of traditional American Halloween celebrations are discussed. The book finishes with some tips for parents and a pre-made handout for non-verbal trick-or-treaters. I love that actual photographs are used instead of illustrations, I think this makes it much more useful for kiddos on the spectrum. We have been using this with our sweet Tony to prepare for activities within the community, but I think it could also be a useful resource in special ed classrooms, as some school activities that can happen for this holiday are discussed.
Tony waiting in the lobby of a radiology clinic for a kidney ultrasound, 9/23/2019, photo by Ariana
If you don’t know our family or work with our son, at some points as you’ve read our story you may have asked yourself “how much of this is real?” While it adds another layer to the height of the emotional cliffs I’m ever scaling, logically I understand the need for that kind of skepticism and can be at peace with it. And yet, there is so much societal and cultural stigma reserved for individuals experiencing symptoms similar to Tony’s that too few public conversations are occurring about what all of these challenges can really look like for everyone involved.
Emily and I talked
about this recently, and she said that every week she reads our blog
she finds herself saying, “mm-hmm. Yep, that’s what happened.
That’s exactly how it is.” I do strive for that 😉 But you don’t
know this for yourself and I don’t view it as my job to convince
you to abandon what is often well-placed cynicism. I write each week
in part for other parents in kindred circumstances in the hopes they
can feel less alone on their journey. Because families like mine are
out there knowing that what they have been quietly enduring is
all too real, and they deserve to hear that a person can experience
every bit of that and still be OK- that their loved ones are worthy
of being loved by others regardless of what their struggles are.
And for them and for
you I would add this: I am not ashamed of my son, and I reject the
idea that his life has less meaning or worth than mine. So we are
tackling hard things in public, each and every week. Some of them
much harder than others, and those environments often require a more
gradual approach…especially during times of emotional upheaval for
our little man.
Medical
Environments
Doing therapy work
at clinics can take on an unexpected urgency that requires action
even in the face of our son’s escalated disregulation. For
example, his Urologist’s ultrasound machine was broken when I
called to schedule Tony’s annual kidney scan a couple months ago.
This necessitated an appointment at an outpatient radiology clinic
he’d not been to since he was a baby. To put this in context for
you, our little man needed an ER visit a couple of years back, and
five people (including me) were required to hold him down for the
doctor to place a pressure bandage. And now, he’s a great deal
stronger…a great deal larger.
Preparation for
these types of visits is the key to success and safety for everybody.
I asked for the appointment to be scheduled at least 5 weeks in the
future. We then began weekly visits to the clinic. We showed him a
picture of the clinic, discussed that we would just be going in and
sitting for a couple of minutes before walking out. We then would go
to a more preferred grocery store afterwards to help establish
normalcy.
Emily takes data on her phone
We took multiple trips
Photos by Ariana
We took multiple
trips into the clinic, gradually increasing the amount of time we
waited in the lobby. He was allowed to eat snacks and watch a movie
of his choice. We also started talking about the ultrasound (US)
that would be happening in the future. The final trip before the US
we brought in a craft roller and some gel that we had been using at
home to approximate the feel of the US and practice tolerance for the
exam. Emily would start by allowing him to feel both of these on his
hand and arm, and then we would talk about what would happen while we
practiced having him remain still so she could do the roller and gel
on his back. During this final preparatory visit I also asked the
front desk for any paperwork that needed to be completed so that I
could finish this ahead of time.
Photos by Ariana
From my perspective
the day of the US itself was a raging success. Last year in Dr. G’s
office he kept trying to flee the lobby, was banging his hands on the
walls, climbing chairs, and loudly vocalizing “ah!” for most of
the wait. This year, he sat the entire time and walked calmly back
with the technician. Last year, we had to hold his arms and legs
because of how agitated he was as he started to panic during the
procedure. This year, he got up a few times and did try to bang his
hands on the their window, but we were able to redirect him back to
the exam without other interventions being needed.
We also worked on encouraging him to continue to communicate in the clinic, Photo by Ariana
The smoother sailing for this ultrasound is a huge improvement given the severity of his fears and sensory differences, however I recognized something important I will need to add for future visits to outpatient testing clinics. I had advised both the scheduler and the front desk about some of his needs and about the possibility of a flip out, but I think a more detailed statement handout for the tech will be better for future visits. Some clinics may not see many individuals with symptoms like Tony’s, and I don’t think they themselves fully understood what to be prepared for or even how awesome this went in light of the past.
Crowd Work
This was an area
where we had to pull back on a lot. Large groups of people scare
Tony when he’s calm- there’s no benefit to him in trying to visit
environments with crowds when he’s already struggling to process
other changes in his life. How we structure crowd work trips is by
stopping immediately at the first bathroom, because environments such
as malls and zoos still provoke anxiety poos. We then focus on
walking safely. I ask him if he feels comfortable going into certain
stores/areas, and for most of them the answer is “no.” We are
honoring that to help reinforce communicating versus fleeing.
Photo by Ariana
Looking at an escalator, Photo by Ariana
Photo by Emily
We also did some work helping him feel comfortable with escalators, which he finds both fascinating and fearful. We would let him watch them for periods of time, and we would encourage him to step on when he walked up. Eventually after multiple trips spaced out over a few months, he was willing to get on, but needed some help with foot placement for getting on and exiting safely. I feel like the escalators inside individual mall stores work best for this, as fewer people are wanting to get on and off of them. As we continue reintroducing more crowd work, we will be focusing on more directional flexibility because our little man really prefers to walk the same route every single time- which isn’t always possible.
Religious
Environments
I know this will be
a sensitive subject for some of my readers because religion is a
personal choice that I sincerely believe should be respected.
Nothing I say about this topic is meant to convert anyone to any
one way of thinking on the subject, but is meant to serve as a
possible guide if needed for families of kiddos with disabilities who
are transitioning to a different spiritual environment.
As some of you know, several months ago I had my name removed from the records of the church our family had been attending for many years. This is what I was actually referencing in my recent post,“A Fine Line.”My decision was not made lightly, but was based on my own personal beliefs and what was needful for my own spiritual growth and happiness. In leaving a church that proclaims to have an exclusive right to divine authority, I became part of some dialogues which were as expected as they were hurtful and inaccurate, seeing as how they don’t reflect the reality of my circumstances.
In choosing to
discuss parts of my spiritual experience that may be useful to other
families, I want to reaffirm that our blog remains committed to
loving others and not attacking them for their own views of the
sacred. In the upcoming weeks I am going to discuss a little bit
about how the cultures of a church environment can clash with the
needs of families of a disabled loved one as I experienced
them, but I want to assure each of you I will try to give a
balanced perspective which includes what I could have done better in
the situations described. Those experiences were not a factor in my
decision to leave, however families such as mine deserve to have
every type of experience they may be going through validated- however
sensitive the subject may be to others.
That being the case,
I have been undertaking for several months now to help Tony adjust to
a spiritual environment that is a big ask. While I currently
identify as a Unitarian Christian, I chose a somewhat local United
Church of Christ congregation to attend for a number of reasons that
aren’t germane to this post but that none-the-less trump more
sensory friendly services at this time. The band there is
great…but very, very loud. So I got permission from the
Pastoral team to bring Tony in every other week before services and
sit through their band practice. They have been amazingly supportive
and open to what we have been doing. Sometimes we don’t go in if
he’s very emotional or I have an activity scheduled with Hannah, so
this will be an incredibly gradual process.
Sanctuary, First Church UCC of Phoenix
Listening to the band outside, Photos by Ariana
Initially, we just
sat in the chapel and left within a few minutes (well before the band
showed up). Then we worked up towards trying to stay for the band
practice. I had to ask Andy to come in with us to provide assistance
because Tony wanted to play chase around their pews. Most of the time
our son is still wanting to leave at the beginning of band practice
due to the volume. If he is willing to sit outside and listen, we
will do that. And, if at any point Tony communicates to me that he
doesn’t want to go in or go back, I will honor that. If this is an
environment he chooses to be in long-term, as he gets older he may be
more willing to use earplugs to help with the sound factor. I have
chosen to expose him to this environment to help him become
comfortable should he want to make that part of his life in the
future. And if he doesn’t, that is OK and he will always be loved
by me.
And now I have to
eat my final words from last week and apologize for another lengthy
post. I promise I will work harder to reign myself back in after this
one 🙂
