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.

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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.

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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.

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.

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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.

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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 🙂