What Would Cathy Do?
Well, that depends on the day of the week, the hour, maybe in the moment that you ask. If you look closely at my now makeup-free face, I’m a little red in the cheeks and eyes. I didn’t have time to hit Planet Fitness tonight since Chris needed picked up at 8pm, so I took a brisk walk outside instead. To be honest, walking and losing myself in music, lyrics, and my surroundings has always been healing for me so this evening, it was the better option. Tonight’s chilly air and darkness numbed me and lessened other distractions, and it allowed me time to process what I’m feeling, and feeling so deeply.
Two conversations today truly grounded me today, and I needed it as my day became increasingly difficult as it continued on. I shared one of them across social media, with a screenshot of the message I received. It was from a former colleague who shared that she needed to have one of “those talks” with a family. It’s the talk that many folks already immersed in the autism community often fear having with a close friend or family member. She said that her mantra today was “What would Cathy do?” and she thanked me for being an inspiration. What you don’t know is that this same woman who works in the field (and tirelessly) to enhance the lives of young people with a diagnosis also has a little boy and an infant girl who has spent the first months of her premature existence fighting to stay alive. I remember her being one of so, so, (SOOOOOOOOOOOOOOO many) who have said to me, “I just don’t know how you did it / do it.” If I posed that question to her, I think she would say, “I … just do.” I remember hearing that same simple statement years ago in a support group I co-facilitated, where the guest speaker was an author and mother of 7 … that’s right, 1-2-3-4-5-6-7 children all diagnosed on the spectrum. And I remember thinking to myself, “what the HELL kind of answer is that?”
We just … do.
The other conversation today came to me from a mother – who has 6 children along the spectrum – and identifies as being on the spectrum herself. She messaged me and shared a deeply moving article about well-intentioned parents and caregivers who sometimes do more harm than good in trying to change or shape behaviors that are occurring for a reason. It is a strong reminder of why treatment (most notably ABA) needs delivered in a manner that is solution-focused, passions and strengths-based, and grounded in actualizing potential across environments. Most importantly, we must always (ALWAYS) assume and presume competence.
This admittedly was difficult for me when we first entered treatment. I lost count of how many times I talked about Christian right in front of him, and was determined to change each and every behavior that I thought was “wrong” without always considering the antecedents. Over time, learning from team members and soon colleagues, I learned valuable lessons. I took those lessons with me into support groups, workshops, staff trainings, truly throughout my work so that I could not just be a “parent advocate” but truly an “autism
“We aren’t broken,” she shared in her message to me this afternoon. I’m so grateful to be working within an organization today where my boss (whom I refer to as a leader, and if you know me well, you know I don’t use that term lightly) who is a strong proponent for this philosophy.
No, my son isn’t broken and he doesn’t need fixing. But even to this day, at 20YO and living as a young adult finding his place in this world, there are often situations that he encounters where I am chomping at the bit to jump in and fix them. In the past year, he’s struggled with two post-secondary programs (he’s out of both), passing his permit test (failed four times missing the same questions each time even though he passes the practice tests with 100% accuracy), improving his physical and mental health (we’ve been up and down the nutrition and psychotropic medication roller coaster), moving through a trauma that had to do with my swift departure from a job and organization that once meant the world to me, and sustaining part-time employment with a disability friendly employer. I’ve been there for him of course, but it is very difficult for me to wait for him to tell me how to support him and not to just jump in and send emails, make phone calls, fire off frantic texts and/or post on social media.
Read what I just said again, please: … it is difficult for me to wait from him to tell me how to support him. But, I need to. I owe him the respect he has earned.
Not everyone who has a diagnosis in the spectrum is able to advocate for themselves effectively, but my son to a far extent, is blessed to be able to do so. It has not been easy watching him being the primary actor on his own behalf, because he doesn’t always make the choice that seems most logical, most ideal, or that makes the most sense.
But … isn’t that what we ALL do? Don’t we all act in the moment the best way we know how, using the tools in our toolbox?
I have to respect his choices. They are his choices to make, and if he makes mistakes, they need to be his mistakes. They need to be his stepping stones to allow him to cross a fast-moving stream. Of course, I won’t ever let him go over the waterfall, but I have to let him try to cross on his own. I owe him that respect. I have to presume competence and allow him the space to grow.
A few years ago, I presented at the annual PA transition conference with my “bully free zone” office roomie. We delivered content entitled “Passing the Torch – Transferring the Advocacy Role.” She spoke as a clinician and educator, whereas I used my voice as someone who spent years supporting other families but also ironically as someone who was walking this path right alongside other students and families. I spoke firmly and passionately about the need for parents and caregivers to find the strength, and to allow their children, to the very best of their ability, to carry their own torch.
Tonight, as that cold air hit my face, tears ran down my cheek and stung my eyes. Some days, some nights, I just want that f*cking torch back. It’s my job as a gladiator mother to protect the cherub faced boy I gave birth to, isn’t it?
Chris is having a hell of a time trying to hold down his job, and it’s sure not for lack of trying. He’s given this his all and I’m so proud of his efforts. Ultimately, this may not be the right fit and of course that’s ok – something else will be. I sure as hell learned that last year, loud and abundantly clear.
But he’s hurting. He’s hurting, he’s anxious and making himself sick. I answered frantic texts from him off and on all day long while I tried to move through tasks and meetings, all with a smile on my face, and hearty laughs spewing from my caffeinated soul. Inside, I was hysterical and just wanted to give Chris a hug and tell him everything would be ok.
I cried for an hour. Oh hell, I’m crying now.
As I’m typing through tears and turning red again, I heard Chris on the phone in his room. He called his job coach to confirm that he would be coming tomorrow during his shift to help him sort all of this out. Together, they will determine whether he gives his current position another shot, or if it is simply time to move on and find something else.
He made that call. I didn’t. And what he is experiencing is fairly typical of any young adult trying to piece together their “what next,” isn’t it?
I’m not in gladiator mode 24/7/365. Not by a long shot. Sometimes, I need to put down my sword and cry, and process, and try to self-preserve in some way before figuring out where to head next. But I don’t take too long before I pick up the sword and use my own “tools” – tools that
hundreds thousands of “Cathy’s” before me have instilled in me – to problem solve and find solutions. I identify resources, people and places that can help me and/or my family to propel forward even during a storm. But I’ve learned to show my problems that I *am* the storm and that I am in control. But every storm even with control has highs and lows, bringing both light rains and loud thunder with intense lightning. It’s all part of being raw and authentic. That’s how I roll – transparent and true. I will do anything for those dearest to me, and a community I love. I would lay down my life for my son.
I am weakly smiling as tonight’s thoughts ramble towards a close, just like I did in the photo taken about an hour ago. I have to keep going. That’s just what I do. That’s all I’ve ever known. I can’t, don’t and won’t give up or in. I’m not ok tonight, but I will be tomorrow. I’ve been through worse (oh, so much worse, we all have) and I’ll keep moving forward and so will Chris. Everything will fall into place, and in a year from now, I know I’ll look back on this night and realize the “why.”
Sob … or ugly cry.
Get back up.
Smile amongst the chaos.
Drink coffee (ok, maybe that wouldn’t be such a good idea at 9:30pm … )
That’s honestly what Cathy would do – in that order, at least, tonight. I’m truly humbled that people find strength in both my vulnerability and our journey, and I am honored to serve others.