"It's about accessing himself..."
what my son needs beyond the social model.
Welcome to Fidgets and Fries. Free af, unless you want to comment. If you’d like to honor my writings with a monetary contribution, thank you. If you already have, thank you. Your support allows me to invest in my writing in a way I hadn’t thought possible as well as pay for my son’s communication lessons. And if you are still an unpaid subscriber, thank you. Cause in a world where everyone wants their eyes on their work, you still chose to put your gaze on mine. This newsletter rests at the intersection of the unserious ramblings of a woman full of buttered rice and dad jokes and the somewhat sophisticated stories and essays of someone who knows just enough “smart” words to sound super intelligent and insightful.
What will today’s newsletter be? Hmm…
Social media loves its advocacy short, cute, and sexy. Meaning the more “easily digestible”, the better. Seconds long videos, bold fonts, bright colors, adorable graphics….eyegasmic activism. People, for the most part, don’t come on social media to learn or unlearn. They don’t hit up Facebook, Instagram, TikTok, etc. to challenge their biases, examine their privileges, or to find ways they can channel their talents and skills into meaningful efforts that would help another person or group. Nah. They come online to laugh, joke, find food videos, love on pretty people, show off their homes, vacations, cars, and judge others for showing off their homes, vacations, and cars. Human connection is there. Genuine friendships are made. It’s a beautiful place even with all its ugly parts. But if we are talking about strictly advocacy, which is a lane I ride often, they like their activism to go down with ease and require minimal effort.
That ain’t me. I hate feeling like I am missing something for the sake of a cute and quick share. I don’t want to leave anything out. I want to provide as much context as possible. I want to remind people that advocacy ain’t slight work, it’s hard work and that requires some hard ass reads. I generally leave the sexy shares to others.
But this time, I opted to go short. Well, short for me. I led with my frustration and anger and I let that take me where I needed to go. I wanted to sit in the pocket of my feelings and just release. I wasn’t trying to do anything other than vent. I wanted to sit with the regret I held over allowing voices outside of my own, outside of my husband’s dictate the direction of my advocacy and my children’s care because they were so fucking loud. And repetitive. They led with shame. Their “work” was largely rooted in making others feel horrible and tasking them with being responsible for righting the wrongs of their past. Making them responsible for their healing.
And some, if I am being honest, ain’t really go through shit, but want to build a following and do so parroting the perspectives of a dominant autistic culture that holds little to no regard for lives that exist outside of theirs. They don’t make it a point to become intimately aware of the terminology surrounding this work. They don’t sit with the concepts and ask themselves, “what does this really mean for me, and what does this mean for the community I wish to serve?”
They ain’t really reflective like that. They don’t spend too much time evaluating themselves and critiquing how they advocate. I do that shit constantly. And I find myself failing in many ways. That’s how I am a good as many say I am, because I am constantly working at being better. Not only for myself, but for my children, and for this community.
This is how I know that choosing to lead with my frustration and lean into the Tiffy, the mom over Tiffy, the advocate, was something that was going to give me a damn headache. I chose to post something that didn’t have me considering all the angles. That was deliberate. I wasn’t in the mood to debate my feelings. I wasn’t in the mood to hear the defense of those who held positions opposite of mine. I purposefully have didn’t sit with those words several times and for many days before I posted them. I won’t say I regret the decision, because I feel as though I deserve moments to let loose. I am human and I need to feel the weight of everything that I face. I cannot hold everything in at all times.
Below is the post I am talking about. Firstly, can we take time to acknowledge how cute my ‘Fidgets and Fries’ logo is?
Alright, that’s enough time. Let’s get to this, shall we?
Things that many thought this post was:
An invitation to tell me about how the Brain Balance program isn’t evidence based or backed by science.
An opportunity to tell me that everything they heard about the program was negative.
A time to educate me on how the social model was still preferable to the the medical model.
A moment to tell me that they hope I think twice before putting my son into this program and wasting between 30K and 50K.
What this post actually was:
Me, trying to sort out my feelings of failure when looking at strangers we met that day reach my son in a way that I hadn’t seen in years.
Acknowledging those feelings but also reminding myself that I do indeed know my child. I just feel anger and sadness at the moment.
The recitation of my frustration at a community that puts so much stock into a social model that it neglects impairment and leaves no room for bodies like my son’s.
Me, explaining that I was looking at people examine my son’s body, not his behaviors, coaching him through his movements, evaluating him and looking for specific objects, materials, etc. that they felt would help him overcome his motor challenges and sensory issues. They leaned into science that whole assessment.
What I am telling you this post was not:
Me making the decision to go through with this program.
Going into the specifics of the science and how strongly I felt about it. Or didn’t. I was only stating that being there reminded me of a lot of hard things. The main one being that my son most definitely needs a model that is going to account for how his autism presents, how it course through his body.
Asking for advice on what I should do.
The Science
I can’t tell you one way or the other how I feel about the science of the overall program, I can only state that from what I can tell, it definitely uses a lot of science. This is contradictory to what many were telling me when they shared it “wasn’t backed by science.” Others would share that it wasn’t evidenced-based. However, ABA is evidenced based and we see how many people have issues with that. Many programs, treatments, etc. can be backed by science and yet still not be the right fit for you, or someone else. Science isn’t magic and humans are complex beings. Spelling for those who are nonspeaking isn’t considered to be science and/or evidence based and we see so many autistic non speakers out there spelling and typing, telling us that this has opened their worlds in ways they never imagined. They are telling us the things that worked and what didn’t. And there are the beginnings of more science being devoted to figuring out exactly why that is.
But sitting at that center, they did so many of the same things that many non speakers have told me worked for them. So much motor coaching. So much trying to understand the movements, not so much analyzing the behavior.
They talked about specific regions in the brain and what they were in control of. They talked about how my son was still using certain reflexes for certain movements and within specific situations. They definitely used science to arrive at the conclusions they did with my son. Most of the equipment they used was shown to help those with motor challenges, sensory issues, and was not unlike many of the things he was introduced to within OT.
The doctor who came up with the program and wrote Disconnected Kids has pages of research listed within the book. This isn’t something I have started to read just yet. They gave me a copy at the center when we left, so I cannot tell you how I feel about the read but I will let you know when I have a chance to dive into it. On their site you can find “research” tab and you can sift through what information they have available there. I have only begun to read through what they have provided there. So, no thoughts on it yet.
I am not sharing this with you to convince you that the science is good, I am sharing it to tell you that there is indeed science there. Is it enough? Not sure yet. But then again, what is truly enough? There’s not enough when it comes to Spellers spelling… Is it the best kind of research? I am not sure yet. I am sharing for your information. So, that you can do what you feel is right. So, you can make your own decisions.
What the program costs.
This was also something that was a big deal within my comments and DMs. It wasn’t the 30-50K that several claimed it was. The program was 12 weeks and it cost 5K. I wonder where they got their numbers from, but not enough to make this a question. I assume they heard about it from someone else, who probably heard about it from someone else…kinda the majority of the thoughts offered in my comments and messages. They didn’t actually go through an assessment. They didn’t actually visit the site. They didn’t actually make phone calls to talk more about it with their local center. They heard from someone else…who probably heard from someone else.
Are there some families who do the program more than once? Probably. I wouldn’t know. But if we chose to do this program and the center in Ft. Worth, it would cost us 5K. This is less than it cost us in copays for ST, OT, and PT for our kids. Actually, for one kid. This is before you add in any programs and therapies outside of those three.
Many worried that I would waste my money on this. I appreciate the concern, but I literally just spent 200 bucks on DoorDash’d Red Lobster for four that wasn’t at all worth it. I have spent thousands and thousands in copays each year for services my boys are discharged from time and time again. I am coming out of pocket for my son’s spelling lessons.
I understand the concern, but there are many things in my that I will spend money on that people won’t understand, can’t understand, and will judge me for it. There will be things in my life that I will spend money on that I will end up regretting later. Will this program be one of those things? I don’t know. I haven’t decided to do it yet.
But I will say this.
My son is exhausted.
He is tired. His body is ON at all times of the day. These competing systems and networks going off within him and he is doing everything he can to control it. He is doing everything he can to compensate. My baby is drained. And I am telling you that I will clear out my savings, for him to have one day where he doesn’t know this exhaustion.
Hope is a hell of a thing. And when you have families like ours, with children like mine, with a son like my oldest, you aren’t facing many options. You are sitting in a hole and no one is willing to drop a line to help you up. There’s little to no resources and our children are growing up in a world that they are not prepared for, and their parents are overwhelmed and lost.
The focus shouldn’t be on why would a parent want to spend 5K on a 12 week program backed by science or not, but exists outside of what our mainstream advocacy considers the norm, it should be on the factors that led that parent there. What is so wrong with our systems, our advocacy, and our care, that causes parents to be willing to spend so much money to help their children? What is so wrong with our systems, our advocacy, and our care that causes these “out of the box” services and resources to cost so much in the first place? Insurance doesn’t cover spelling to communicate or RPM. They don’t find it to have much research. It isn’t evidenced based. Large organizations like ASHA don’t support it… And because this is something that isn’t covered by insurance, you either have trained OTs billing their spelling lessons as regular OT sessions, or you have to come out of pocket for those costs. For a methodology of communication that has proven to work for so many Nonspeakers.
We aren’t asking the right questions and we aren’t concerned about the right things. That post was understood by so many. But the ones who didn’t get it were incredibly frustrating to read. And even more frustrating to respond to. I knew that most were coming from a place of good intention, and I care for them, but I have to give life to what I felt responding to those messages and questions one after the other…I was frustrated as hell.
I wrote a post that spoke to the fact that my son is indeed going to need access to services, resources, accommodations, etc. that will target exactly how his brain is wired. Period. His Autism ain’t my Autism. This isn’t about him accessing the world. This isn’t about him accessing other people. This is about him accessing himself. He is disconnected from himself.
And he is so very exhausted because of it.
I needed this post today. I had a similar experience this week with an advocate who I respect and does good work but who is now going after another advocate who is also doing good but different work. Claiming to know the “way” and taking one autistic persons vantage point and claiming it’s a truth for everyone. I reached out with a respectful email - no reply. Sigh. Here’s the thing, when we declare “the way” we turn ourselves into the kind of interventionists we loathe. We become overly invested in our position and can cause harm & trauma. Autism & all it’s assorted co-occurring conditions are frankly not fully understood. Neuroscience & genetics aren’t there yet. Lived experiences are great but have so much variance and intersections - it’s hard to compare those experiences and support needs. I firmly believe we need to be open to evolving support paths, changeable options and support that’s wholistic to the family.
My child, like Aiden, was dx age 1. Later my older child at 4. And now we know the adults are ND too. We have just been put through the ringer with interventions. It’s affected our whole family. It’s often been hurtful, exhausting, lonely and caused us to lose touch with ourselves. Lately I’ve been circling the wagons, careful who we let in and really asking if it’s worth it. Both from the medical community and autistic community.
As always - thank you for your voice & story.
Do what is right for your family, you know your children.