Hannah and Tony from an outing to Baskin and Robbins this past week. Photos by Ariana
To My Children
Words can be spoken or written as no more than hollowed vessels that propriety and circumstances may dictate be served up and spiced at the appropriate intervals. These customs surficially demonstrate to others that we love, we care, we rejoice, we are grateful. But to render them with every depth of feeling that is in them…perhaps we can never give that to another who shares not our hearts, our souls. Whatever I may say about what my reflections on my experiences or difficulties are, never would I want anyone to doubt that my love for my children is powerful beyond the limitations of language, and an unconditional motivation for many things that I do. Only the parts where I goofed would I ever want to have done differently. I love you both with everything in me that is deeper than words convey, and I am grateful every day for you both.
Busy As A Mom/Hab Therapist/Instructional Aide
Y’all, I’ve had a busy, busy few days. And, I just had part of a dental crown crack off today, so…I’m going to be even busier. Posts are going to be short for a while so that I can take care of all of the everything that needs to be done (the pictures below are from this morning’s hab session). Much love, Ari
Some Reading To Consider
The Trouble With Witches, by Kristen Painter
When things have been very stressful, I need reading that isn’t baring any scary plot teeth. And that is definitely this book. For my more religious loved ones and friends, it’s a clean read. None of the principal characters die. The ending is happy (even if the timelines for being so are maybe less plausible). My only real nitty picky criticism other than how quickly the characters fall in love is the use of “luminos” by one of the characters to turn lights on with her magic. It hedges too close to the Harry Potter lumos for my comfort levels. (As I said, nit picky!)
Otherwise, I feel like the story is creative, the characters mostly communicate in a healthy manner (love that!), and while there are some moments of tension, all of those are resolved pretty quickly and the book always seems to give you the sense that they will be. There are a couple heavier themes in the background (the heroine’s mom is a con artist that tries to use her magic to set her daughter up to take the fall for a major theft, for example), but neither those nor the emotional trauma that could have resulted from them are really dwelt on in much detail, the characters involved seem to default to the positive and solution finding so it didn’t weigh the emotional feel of the book down much for me personally. So for all of my spread thin friends looking for a quick read that won’t fan the stress flames, this is a cute book that could be just the right amount of distraction you need.
Because he’s not there the full day yet, but he is getting more used to school being added to his schedule of expectations, we are starting to take home items for him to complete after his other therapies. Colored independently, I cut out, he helped with the glue stick. Photos by Ariana.
Most days are packed. Up at 4:45, giving the kids their meds, getting ready to walk around 5:30 with Tony, neti pot, yoga, rower, shower, makeup, drive into school, participate in everything that might be required there, drive home, be present for anything his ABA RBT or BCBA needs, do some chores when they don’t need me, therapy (hab hours that I am responsible for or other therapy types), maybe help Tony with something that didn’t get done at school, pick Hannah up from somewhere…and somewhere at the end of that and everything else that needs to be done, it’s nearly 7pm and time to start getting Tony ready for bed and watch some anime with Hannah afterwards.
Sometimes road conditions extend the drive time…we had fog one day this past week! Yesterday our day went straight through to nearly 7:30… that’s us at school in PE (where he did a great job tolerating a high speaker volume and noise level). After ABA we did a haircut, and the last picture is right after parking for public therapy some time after 5:30.
Our son’s RBT commented this past week he hasn’t seen me work on a puzzle or play ukulele in several months. Kinda hard to fit anything like that in anywhere on the schedule the way things are right now.
But, truth is, I wouldn’t choose to do anything different. Being in the school environment, I can see how having my level of knowledge of Tony and how he responds to things is helping contribute to successful outcomes. And the growth I have seen in him just from getting to be around other kids and see how they do things has been enormous, it’s a gift that pays more than it takes. More joy, more hope for the types of opportunities he may be able to have in the community.
What I do in the habilitation therapy hours I am able to work also cannot be cut too much, because he’s gaining skills there that will benefit him everywhere else and there’s no place else in his schedule they can be practiced. Sweeping stuff into a pile using a broom? He can do that now. Making his own smoothie? That too (including pouring it into a cup)! Plugging in his own kindle? Yes! Getting his own zippers threaded and up without assistance? Much of the time.
Tony’s developmental pediatrician asked this past week (and I am going to paraphrase here) what I was doing to make sure I was taking care of myself and who is coming in to help me. Well, with a schedule like this? Options are limited, and they look like makeup, a couple minutes of meditation, watching telenovelas while I’m eating, reading a book while pedaling on my stationary bike, or listening to a book while I wash dishes…and the truth remains that options are limited for anybody coming in to help here even for all of the growth Tony has made. My friends all have jobs and families of their own. Most of our family doesn’t live near, and the ones that do also have their hands full. So for me to get more self-care time, I would have to cut something necessary for one of my children out of my schedule. And that’s not happening.
Sometimes things happen to prevent me from doing certain self-care items, and I confess it does make me feel edgy. Tony went to give me a hug during therapy last weekend and his finger nail clipped the side of my eye because he was looking off to the side and didn’t manage to get his arms positioned exactly on either side of my head to avoid contact. I tried to swerve, but I wasn’t quite fast enough and his finger still clipped me on the side, so I felt it was best to skip the makeup for a few days to avoid getting an infection.
Those things can’t be changed. Our son’s needs and challenges can’t be changed any other way than what is being done. I think it’s pretty important for me to clarify that while I stated in my post last week that I don’t have time for therapy for my current circumstances, going through therapy for other things has given me a lot of well-ingrained habits that allow me to self-rescue when I’m emotionally struggling. None of the techniques therapy can provide will make up for limited time for self-care, and none of them will erase ongoing high stress occurrences. Which is my way of saying I don’t think it would add anything beneficial to my tool bag that I don’t already have- but that if someone doesn’t have well-developed self-rescue skills and they are walking a similar journey, it may be beneficial to find some way to make time to at least read some pertinent self-help books and find ways to apply what can be done to their own circumstances.
Some day, our little man will be well-acclimated to the staff, the sensory input, the expectations at his new school and he won’t need me there the same way. When that happens, I may take a few months just to nap and soak in some self-care IOU’s…but until then, I can definitely keep running on even the fumes of happiness it has given me to see the growth Tony has experienced there. For me, even though I never would have chosen for my children the struggles that they have had, it has been worth it even when it’s been hard to do the things that I have done, and it is important to me that each of you recognize that side of my experiences exists also.
Maybe this looks like any moment you might see for anybody this time of year, but this is the first walk Tony has ever kept a hat on his head for most of it, and he’s nearly 12. A kiddo with extreme sensory differences and tactile defensiveness may have struggles most people can’t imagine. Photos by Ariana.
Originally, I had planned this particular post to come after “Maybe She’s Going Through It.” Then everyone was sick, and I just wasn’t feeling the writing vibe. And then I got carried away in watching my son doing so well with some of his goals the first week we were back at school, and I just wasn’t sure I wanted to take my next post into more negative territory. As I thought about it though, I feel like it is a fine line to walk between toxic positivity and optimism, and I feel strongly that some truths about what the experience can feel like for individuals in a family with an individual who has severe developmental delays, a history of extreme behaviors, or high levels of needed support should be talked about more. I have a lot of hopes, true…but I also have absorbed a lot of hurts.
Recently, in response to a statement I made about how intensely stressful my life has been the past year, a nurse for one of my medical providers said basically well, that’s just life and you have to find a way to deal with it. I want to tread as delicately as I can with this. To be clear before I go any further, I would never want to see this person shamed for having said that, so what I say is more in the spirit of hoping to see my perspective understood. I chat on-line with another blogger whose view is that the toughest thing a person has been through is the toughest thing they’ve been through. And I think that is a lovely and gracious way to interact and think about the struggles of others, because some times the comparison filters between two people just don’t help.
That being said, I’m going to compare within my own life. I used to have what many people considered to be a “normal” high-stress life, more or less, except for the part about how my brother died. Pretty common stress and trauma themes that can be had in this life.
I had no idea, literally no idea how good I had it. None. Zero.
Even when I feel like the need to “go and fix [my] makeup” because other people are telling me that as I cope with my own broken heart moments “don’t matter how you feel, it only matters how you look,” the truth is sometimes like Sia “I may cry ruinin’ my makeup…and I don’t care if I don’t look pretty, big girls cry when their hearts are breaking.”
I now look back on those days with longing for how easy they were in comparison. There’s so much I’ve never written about on this blog because it’s just not in the best interest of one or more of our family members to do so. And even when some people say that they couldn’t be me and do what I do, I wonder if they realize that I feel like I’m living out a whole bunch of moments like it were a songbook of stress, singing with Chloe about how “no matter how many times I break, I put myself back together every damn time…yeah, I make it look easy, but there’s so much I’m needing” as I’m rushing towards a bag of Hershey’s truffles trying not to “loose control,” except unlike Teddy Swims, my codependency for unhealthy stress management has become dark chocolate- though we apparently do share the common ground of having tried everything but therapy (at least for me not in the past 12 years). Literally, for every person who thinks it would help manage all of what’s been going on this past year better, I’ve got this to say:
I. Don’t. Have. Time. My schedule is far too packed, I can’t even get 8 hours of sleep a night.
I’m too busy getting my hands dirty taking care of things that need to be done around the house, or doing therapy as one of Tony’s providers, or working my second job as has one-to-one aid.
And, I’ve been through therapy before for other things. Trust me on this one, even when you know the techniques that can come from therapy, there can be times when it’s just not enough to fix everything that has been going on. Therapy is not a magic wand that will dematerialize the happenings in one’s life, and for some things, I think it’s completely normal for a person to find it stressful and struggle to manage that at times. Those moments can leave me hoping and praying I don’t start feeling like Jelly Roll when he’s singing “I’m so damaged beyond repair, life has shattered my hopes and my dreams.” But like him, people tell me that at my level of stress, “I’ve spent so long living in Hell, they say my lifestyle is bad for my health.”
But I can’t do anything more than I am doing to help or change things. I do what I do because it is the best path towards the light at the end of the tunnel for me and our family.
So to anyone who has maybe felt uncomfortable listening to me mention something stressful, forgive me my leaks. But sometimes, the truth is, there’s just no such thing as emotional Depend (TM Kimberly-Clark) that can soak up my reactions to things that are happening to make sure everyone around me is always comfortable with what they are seeing or hearing. So may I gently recommend to avoid tell someone walking a similar path to mine to “run and hide [their] crazy and start actin’ like a lady.” (a la Miranda Lambert)
Because what they are going through might not be anything like your mama’s stress. Or your stress.
Maybe just give them a hug if you don’t have time to do anything else. Maybe tell them you see them, you see their struggles, and yeah they are tough and anybody would be having a hard time in their shoes. And if you don’t see them and you have time, ask them if there’s anything they’d feel comfortable sharing so that you can see them.
*P.S. If you’d like a deeper dive into my thoughts and feelings as I wrote this post, and you have the time, may I recommend listening to the songs I listed or looking up their lyrics. The full list is as follows:
“Make it Look Easy,” by Chloe
“Lose Control,” by Teddy Swims from his Album I’ve Tried Everything But Therapy (Part 1)
There’s no way a gift bag, fancy wrapping, ribbons, or a bow would hide that this year, I felt stretched thin enough that I simply slapped traditional veneer on the right spots heading up to the holiday. So what we were doing kinda looked outwardly like appropriate festivities, but the feeling didn’t quite reach into my own emotional epicenter. That part of me just wanted two weeks of sleeping in delivered under the tree (whether it was wrapped or not) and didn’t really care how it looked on the outside to anyone else.
Andy was the first person to get sick last week. I doubt it came from his job, because he’s having to mask up there. More probable those germs became unwelcome holiday stowaways on one of the many errands he had run that week. Tony was the second person to become ill, and by Sunday, he had a fever of 104.6. At that point I knew there wasn’t any sort of sparkly spackle I’d feel like pulling out of my system to make something that looked like a holiday dinner…so I asked everyone how they felt about ordering pizza on Christmas eve.
Tony during one of his daytime naps yesterday. Ne never naps unless he’s feeling very sick.He likes to curl up into the wall sometimes when he’s sleeping.
I was glad Andy and Hannah were cool with that when I started feeling under the weather on Monday. Tony hates pizza because of the mixed textures and wasn’t wanting to eat much anyways, so we were just focusing mostly on hydration for him. My symptoms were milder than either of theirs, but still I skipped the makeup for 2 days and my system still feels less than Joy to the World even if the skin is glowy as it battles off the rest of the crud. Wasn’t flu, wasn’t COVID, we’ll just call it the gift of the Christmas germs, viral edition…since a whole bunch of people we know are also sick right now too.
Tony’s still sleeping a few hours during the middle of the day which is nowhere near his normal. And even though the version of this I experienced is much more mild, I’d like to be napping right along with him, so…I am going to leave this post with wishing all of you a wonderful New Year and the notice that I am giving myself the post-Christmas gift of at least two weeks off of writing posts here.
The stairway up to the balcony level at Symphony Hall is pretty wide. If I had to estimate, I would say it is four feet at least between the wall and the first set of rails, and then another four feet or so of stair width on the other side of the middle rail. Hannah was walking very quickly up one of those sides (we were heading up to the balcony for the start of the Nutcracker, everyone else using the stairs at the time we were on them was going up), and I was on the other side of the rail, getting ready to walk past a couple of people to the side of me holding on to the middle rail.
One of the women looked me straight in the eye as I was starting to pass them (I had looked over at her as I walked past to make sure I was easily clearing without contact) and she said “Well, if you’re going to be so rude and you can’t wait you might as well just pass.”
From my perspective and memory, I was a bit confused as to why she felt I had been rude to her because there was a good 12 inches at least of space between her and me. I said to her that I wasn’t trying to give any offense or trying to be rude, I was just walking past as I was trying to keep up with my daughter on the other side.
I asked Andy when we got home if there was some etiquette rule for that type of situation that I wasn’t aware of about stairs and he didn’t think so. I Googled, and didn’t come up with a different answer from his. The feedback I was given from others I discussed this with was that she went off on me unnecessarily, and one person I spoke to felt like my take was too generous.
My take was to send hopes and prayers for some positive energy from the universe to go her way. And quite frankly, I’m worried about her. And this is not virtue signaling for those of you who have been rightly taking your social media induced cynicism gummies. I feel some genuine heartfelt concern is warranted if there wasn’t an actual breach of etiquette on my part. I know when I’ve reacted in a way others might not have expected, I was going through some pretty tough stuff (you should read that as I was in some really, really hard circumstances that I barely made it through without falling apart) and struggling with the stress and weight of it all. My thought is maybe she’s going through it and whatever it is, it’s pretty damn rough for her right now.
If you’ve read every single post, you would know we’ve been through a lot on this journey. And everything you read is nowhere near all of it. Not even close. If there is one thing from the bottom of my heart that I have learned and learned well because of this journey is that sometimes when a person is struggling in the moment, there’s so much more going on behind the scenes that led to whatever it was that happened.
Part of me wishes more people could see all of that and have compassion for me when I struggle with something or do come across rude, but then part of me gets it. Most people aren’t seeing most if any of whatever is going on. They’re perhaps not experiencing anything like it themselves. They don’t know that maybe I’ve really been going through it.
This is the time of year where we love to buy people gifts, but I think the ones that mean the most may be harder to give, though they are certainly cheaper. The best gift I would want anybody to give me sometimes is a little grace and compassion when I’ve been a little rough around the edges. Because sometimes y’all, I’ve just been going through it. And yeah, maybe I goofed and did something rude at some points (usually without meaning to, it was just the stress showing through). But maybe after walking a few years in my shoes, other people might also find it would be hard to be completely polished and perfectly professional or polite all the time. Because when enough stuff hits the fan for me or anybody, I think it really can be hard to show up as one’s best self in every situation. I know I definitely sometimes fall short of everything I want to be on this journey. And that has helped me to see something different sometimes in other people’s reactions to things.
I am wishing all of you positive energy and happy days ahead this week. Much love, Ari
Tony, during a speech therapy session with Jenny 3pm yesterday doing an activity geared at improving joint attention after school and a few hours of hab, photos by Ariana unless otherwise indicated. Right now we fill in during her cancelled sessions so he can still see her and work with her because she doesn’t have scheduled openings when he’s available.
To help our son with his combination of sensory differences, functional deficits, and disability-related needs acclimate to an environment such as a public school is more complicated than just showing up and gradually increasing his time when he shows he’s ready for that. There are so many moving pieces to think about.
Screenshot of photo sent to me by Tony’s school OT, Ms. C, showing me the tasks she’d be starting him with yesterday.
How complicated is his schedule already? Very. His school days start at 5 am, when he wakes up and does his first community safety walk (which we determined to be necessary to help him succeed with the increased expectations for sitting in the school environment) and often therapy tasks depending on the day will go until 6:30 pm after he leaves school. Change too much at once in his schedule, and he’ll freak out and reject the school as the cause of it all, because he really struggles with too much change at once. Add too much more and he’ll struggle, feeling too overwhelmed to focus on all of it combined.
Are there steps that need to be added to help him grow into the school environment outside of it? Many.
He’s slowing wanting to try more things in PE, but mostly he still prefers to walk laps or play with the rings or stepping stones in PE.
Right now on days ABA isn’t able to come in to do that therapy work, I am extending his time in public spaces during habilitative therapy so that he can get used to being out of the house for longer periods of time by starting first in environments he’s already demonstrated a tolerance for doing things that involve practicing his appropriate waiting, sitting, and food ordering skills and expanding to just tolerating all of the differing sensory elements of public spaces for larger portions of his day. We continue to work on helping him adjust to the behavioral expectations of the school environment in all therapy types, and I spent more time than I envisioned last night and this morning looking at fidget toy options with switches similar to light switches on them to help give him something to control that’s not a classroom light when he’s feeling the need.
And there’s more, so much more. Learning to use glue sticks, scissors, communicating and coordinating with all of his providers as regards to what his current behavioral needs and interventions are so everybody can be consistent…honestly, it’s a lot. Plenty of normally developing people can’t schedule or wouldn’t want to schedule like Tony has to be scheduled because of the complexity of his needs.
Sometimes it’s a lot for him, and it’s a lot for me. I’m right there walking with him at 5:30 am, trying to sneak in little bits of things for me like responding to messages, inhaling a few minutes of meditation and yoga before I jump into the shower…is squeezing in 4 minutes on my rower really enough to help my cardiovascular health? Probably not, but hey, the 20 minutes of kettle bell I did while Justine was in doing PT this past week count for something beneficial there…right? Right.
Because how Tony has to schedule, as his one-to-one aid and primary habilitative therapist (and the person who shows up to most of the therapy sessions as the parental support) I have to schedule, and sneak anything that I might need to be doing for me in and around it. So, that’s as much as I’m writing this week. Because I finally finished episode 102 of La Usurpadora somewhere in all of that, I need to go find something else to watch while I wash dishes, and then it’s off to do things for our other beautiful child. Because that may not be on Tony’s schedule necessarily, but it’s surely still an essential part of mine.
Wishing all of you wonderful week! (pictures are from other parts of our day yesterday).
As you are looking at this picture, I don’t want you to ask yourself should our son have been up there on collapsed bleachers. I don’t want you to think about whether or not he can get down safely on his own. Those are, of course, valid questions, but there’s really only one thing I want you to focus on in this picture.
The expression on his face.
Notice how glazed over his eyes are? That he appears disoriented?
I have encountered many times on this therapy journey we have been on as a family the idea that if a skill is learned and mastered in home, then it can be taken in public where it will transfer over to other environments and ensure safety and the same results for everybody involved. I can’t emphasize strongly enough that this is completely a neurotypical perspective, the perspective of someone who doesn’t know what it’s like to have more debilitating sensory differences. And unfortunately, it just won’t work that way in my opinion or experience for an individual who does have a certain degree of sensory differences.
Anyone with anything more than a minor sensory difference can tell you that behaviors and reactions in and to anything in public or the community at large can happen entirely in response to the different sensory stimuli present in that environment, and those are things that cannot be adequately replicated or prepared for in home. They require being present in each and every specific environment, because what one public place is like is not what every other one is like in terms of sensory stimuli. And it requires time to learn coping strategies and to adjust to each of the different environments and stimuli.
Tony has capabilities for tolerance of structured tasks and compliance with safety skills that hasn’t fully transferred over into the school environment yet, nor can his tolerance for those things in other environments guarantee an immediate transfer over, because there are a combination of elements he is being exposed to that are unique to the individual school setting. The Tony that all of his therapists recommended as being ready for school doesn’t always seem to be the same little boy walking into this school right now because there’s so much more going on here for him to adjust to. As he continues to get used to the sensory stimuli in the environment, only then will he be able to react as he would in home or a setting he’s already more familiar with and comfortable in.
On the day that picture was taken in PE, he was feeling overwhelmed by the sound level coming out of a speaker box playing music as light displays on its surface flashed, by the sounds being produced by the other kiddos in his class which can sometimes be overwhelming by itself because of the intensity and overlap of the sounds, and was just trying to find a way to get as far away from all that noise as possible and still follow my instructions to stay in the gym. And because he struggles more with the motor planning for climbing down, when he would climb up there initially it would take a minute or two sometimes for him to come down or to work up the confidence to overcome his fear of falling and try.
Now most days he doesn’t even try to climb those bleachers, because I have been providing reminders and tangible reinforcement for following the rules (and his response time for getting down is getting faster and faster as his muscles adjust to the movements and he gains confidence in doing that). But he still sometimes lays at their base, or against a wall, with his back to everything else, trying to minimize the amount of sensory input coming his way. And sometimes, he really struggles to do functional tasks right away when we leave PE if it’s been very loud in there.
His experience of the world around him isn’t the same as a person with a typically functioning nervous system, nor are his reactions. This is why his current team recommended building his tolerance for an entire day there at the speed he can tolerate, and in many ways his behaviors tell us exactly how well he is or isn’t tolerating the environment. When his sensory system is overloaded, his reactions come more from a flight or fight level than the conscious reasoning that would govern a more measured response that remembers and follows rules because his nervous system is feeling all that extra pressure. Each week I see him blossoming more and more in the school setting, but of course I must acknowledge he still has areas where growth is necessary.
And it will come. We know this because it has in other environments, but it won’t come because he can already do those things in other environments, otherwise his data points would look like they do in other places. Increasingly appropriate reactions will continue to come as his tolerance to the environment improves enough to move farther out of fight or flight reactions. And the time table for that is entirely determined by his neurology, which is beyond the power for anyone’s expectations or desires to dictate to.
A fully clothed Tony sitting on his Aunt Randi’s lap while she watched him a couple weeks ago for my surgery, selfie by Randi, she’s cropped from the picture out of respect to her wishes.
My sweet sister-in-law, Randi, sometimes babysits our son when I have medical appointments. For a recent appointment I had with my allergist, I got him dressed and asked him to keep his clothes on for the entire time his Aunt was here. Tony has a history of pretty intense tactile defensiveness as his skin nerves are much more sensitive than a neurotypically “normal” person, so he usually wears only his underwear in house unless there is a therapy session in progress. Currently, after programming I did in habilitative therapy, he will keep his clothes on in home for the entirety of all therapy sessions (though he didn’t use to be able to tolerate that), even ones that last 5 hours for ABA or Hab, but this is the first time he’d been asked to keep them on for his Aunt.
I returned home about 3 hours later, and when I opened the door, there was my sweet, fully clothed son to greet me at the door, eyes wide to the max, expression nervous…and his shirt was on backwards. So I commented to Randi that he must have used the bathroom, because he will sometimes take his clothes off in home to do that during therapy before putting them back on so I figured that to have been the case.
Not quite.
Because I didn’t repeat the expectation for his clothes to stay on in front of Randi when she arrived, he knew she didn’t know. So he stripped completely down (even took of the undies), and ran around the house butt naked. She got him to “compromise” and put his briefs back on, but when he heard the garage door open, she told me he ran and put his clothes back on as fast as he could. And they were all on when I walked in the door, just the wolf on his shirt wasn’t in the front which is what gave him away.
Sometimes people think individuals with our son’s level of Autism don’t really emote (they definitely do), but he had a clearly recognizable “I’ve been busted” expression on his face after I heard Randi’s recounting. Clearly our little man was hoping I’d think he’d kept his clothes on the entire time like I’d asked.
Three hours and a mad dash to get dressed before I got inside…and he kept it in his head the whole time what I had asked him to do and was aware his Aunt Randi didn’t know and tried to capitalize on both in a way that brought him less clothes and all the rewards that would come from him actually having kept them on.
We can see the problems, or we can see the potential.
Impulse control is an area that’s been more impacted for our son with his combination of conditions, and he has to be given practice controlling the urge to do things he wants to do, like turn lights off when he shouldn’t, as part of his therapy programming so that his brain can develop that control. Photo by Ariana.
Should he have kept them on? Sure. But, moments like this are the ones people won’t believe until they see it for themselves, and they are part of why I have worked so hard and given up so much of my own life and time to help him on this journey. Underneath the enormous challenges that have been brought to him by his combined disabilities, is a kiddo who can remember something his new school speech therapist mentioned once at the end of a session and ask for it on his speech device the very next day at the time speech therapy would typically be happening for him in school.
I’ve said it before and I’ll say it again, he’s a lot smarter than most people realize. That doesn’t mean I think he’s going to cooperate cheerfully with learning certain things at first. As we have discussed before, he has some huge challenges that make most everything feel pretty difficult for him. I know if someone asked me to work on something I was doing way worse than everybody around me on all day every day, I’d probably not be so cheerful all the time either. And that’s a whole lot of stuff for him. In my opinion it’s much easier to feel cheerful when everything is not so difficult. Though it may not be easy for him, the potential is definitely there for him to continue to grow so I’m just going to prioritize seeing that more than any problem that arises.
There are times when I have encountered the sentiment in others that I don’t have much of a right to express any sort of discomforts over the personal challenges I have faced or the sacrifices I have made to provide the intensive level of support required for our son. He is the one with the disabilities I am told by people who feel that way. And I have chosen to be there and do those things.
True. Of course that is all true.
The disabilities I have written about are his, however, he’s not the only person in this house to have developed additional needs because of them. What happens to him isn’t just happening to him, and sometimes all I want is for people to look at what I am going through and validate the depth of difficulty that has existed for me personally. To hear me and to hold me when the pain of certain experiences has wounded me and left me emotionally limping for a time or even curled up into a mental ball (because as positive as I prefer to be that’s definitely happened). To listen to me when I say this is what he is capable of, this is his clinical history, this is how he’s going to respond to things- especially the part about his capabilities- and to really be willing to give him adequate chances to show all of that to them.
I may understand when they choose not to see all of that the same way, but I still feel a sliver of hurt sometimes when this is the case because I just want to be seen as my own human who also gets to have needs in all of this.
And, I want people to really recognize that as his mom, I’m more than his backdrop. I am my own person, and sometimes the things we go through together profoundly impact me. Have left me feeling like my own self-care needs don’t have the same right to matter if and when they even get to. Because the sacrifices for me personally have run deep, the need I feel for the progress to keep flowing in is sometimes near ravenous.
To be sure what his neurology brought him into the world experiencing has been brutally hard for him (especially in his first three years of life) and my heart has felt a depth of pain for that only a parent can understand. I love my son and I want him to have choices in his future (and again, to be clear, I love both of my children the same, but their needs are dramatically different). I want him to be able to live in the community and find joy. I remember a time when we couldn’t get him into most places, and when we had enough therapeutic break throughs to get in the doors for even a few minutes, we couldn’t do so without me running after him every few seconds. Tonight, we were in a busy Target he’s more familiar with for 54 minutes and he stopped and came back with my verbal request every time he walked more than a few feet away from me. And, it was a school day with ABA afterwards, so he had a full day of activities (many of which were outside of the home) and still tolerated the experience so well.
A recent therapy session during another family member’s doctor’s visit, where the goal was to not rip the paper off the exam table. Mission accomplished (left it on for over an hour), and it’s the first time he’s been able to control his impulse to do that. Almost every moment with him can turn into a therapy moment.
The skills and tolerance he has now would not have happened without what has been done by everyone involved, and when I see how far he’s come, I feel like it’s been worth it to me the prices I have paid personally.
But sometimes, I still just really need a hug to help me hold it all together.
And sometimes, not even the makeup application can hide that…
Screenshot, group e-mail sent 12/28/2016, photos by Ariana
I thought of all the ways I could write this post, and I decided just to wrap it around a screenshot from an e-mail I sent some friends on December 28, 2016. I am going to re-type it just following this in case the images don’t show up well for those who get my posts via e-mail, though a few of my readers may remember this e-mail already because it was a group e-mail that some of you were recipients of. “But right now, I just feel on top of the world with that in some ways too, because he’s been out of diapers at home for 3 weeks now, and been going out in public without them this past week….and it’s been going so super, super good. Sometimes though, I get frustrated because it’s like people won’t give him the same level of trust with his potty training skills they would a “normal” kiddo. At his occupational therapy today, the therapist wouldn’t let him go into the ball pit because she didn’t I guess trust that he wouldn’t pee in their pit. But he hasn’t been having accidents in public, and he’s been doing so good at home, it just really was hard for me. She would have never said the same thing to a kiddo who didn’t have his disorders. But that’s the extent of my drama right now. “
I decided to also add a screenshot of the last order of diapers we ever made, which was during the time I was buying pretty much everything that wasn’t groceries at Amazon.
I know there’s multiple sides to this story. Some will sympathize with the OT because they too would feel that a diagnosis list like Tony’s merits extra scrutiny and/or caution for any type of milestone. Please note, I have never named this OT on this blog nor will I because I have taken a public position against how this was handled and I know that the details will be recognizable to not just her but every therapist working with him at that clinic in 2016. My desire here is always to share what things look like from our end and never to shame a person on-line. And in the interest of that, I would say that in being able to see the OT’s perspective, it is important for others to recognize that real damage can be done to the feelings of self-worth and esteem of the disabled individual when they go through this type of situation.
Tony, 2018, in underwear at our house. Been in them for 2 years at that point even, and I assure you I don’t want to clean my home up from frequent potty accidents anymore than I would a public location.
Parents of kiddos with certain levels of challenges may more easily see my side of this because they know what it’s like to have every accomplishment their kiddo makes, every inch of progress, doubted and to have proof required in excess of that which is required of a non-disabled kiddo. They will know what it feels like to have others refuse to see the progress. They will see the emotional toll it takes on their children (who definitely will recognize and understand when others doubt them and can have very strong emotional hurts from that). Other parents may also feel the additional pain of having many people be more sympathetic to the position of the person with the doubts than the family because it can make these circumstances feel even more isolating and under-supported. I know even if I personally can understand on some level the doubts and concerns another person has, it always still hurts me as a person and a parent and my feelings are just as worthy of validation and support and I imagine other parents may feel the same way.
What isn’t in that screenshot is how I handled the situation that day. The OT involved would not allow our son into the ball pit unless I agreed to put a diaper on him. I refused to put a diaper on him because I knew it would be like saying that I didn’t believe in him either and that I wasn’t going to stand up for him to others who doubted him.
Tony getting a drink before using a public bathroom in 2019, he always tells us in public when he needs to use the bathroom on his speech device.
The ball pit was one of the things he loved most about that clinic, so I wasn’t surprised when she told me it was the worst session she’d ever had with him. She’d made it clear through her words and actions that she didn’t believe in his ability to have progressed in that manner and that combined with being kept from the ball pit when other kiddos were not really upset him.
People still ask me if he’s potty trained and if he has accidents at night and they’re almost always surprised by the answer- and he’s been out of diapers for nearly 7 years now. Yes, he’s potty trained. No, he doesn’t have accidents at night, and no he doesn’t have accidents in public, and we got rid of the diapers once he’d demonstrated the ability to wake up and use the bathroom at night without wet diapers.
Everyone has the right to feel their own feelings and their own thoughts about this. Including me, but especially including Tony. Even if I can see the perspective, my heart still hurts some from that kind of response and I know his does even more because it’s about him. Sometimes I think it’s easy for people to get hung up on Tony and his behaviors, but it is important for everyone to know that his behaviors are often how he as a non-verbal individual chooses to communicate first (because it’s often quicker and more immediate when he’s really upset than walking to his speech device) about how he feels about a person doubting him (because he’s really pretty good about picking up on that) and or holding him to a different standard from even other kiddos he sees utilizing the same types of services.
