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Autism Recovery and Daring Greatly

This blog will be heavy with Brene Brown-isms so if that is not your jam, you may want to move on now.

On one of my work trips, back when traveling was a thing, I had the chance to watch Brene Brown’s Netflix special. Prior, I had not heard of her or her work.

My nose has been in other books for the last decade and exploring my own issues with shame was not on my to do list.

But, her Netflix special hit me, right in the core.

She quotes Theodore Roosevelt, The Man in the Arena:

It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.

That spoke to me. On many levels.

Putting our journey out there is scary and does open me up to criticism. And it is a journey filled with triumphs and failures. This was not linear. But, I have always moved forward, daring greatly, with the desire to optimize my family’s health and wellness.

So a few weeks ago our family’s journey was shared by my dear, dear friend and colleague Julie Matthews. She has a series called Getting Your Hopes Up. Our family shared the profound improvements on many levels that came from shifting our dietary choices years ago. I recently updated it.

I now work for Julie along with my work with New Beginnings.

When that email went out, she got all kinds of feedback. Most of it positive, families wanting to make nutritional changes, who see the influence of chemicals and additives on their children, who understand the power of nutrition to heal.

And we got one negative……

And I will be honest, it took me a while to shake it off. This reader was highly offended at the prospect of autism recovery (although they called it cure, I did not) and it was clear that the email was triggering enough that they did not actually read the blog.

The person called this type of discussion ableist.

I have been increasing disheartened by this term being thrown about – including at me for sharing a story about the current pandemic and highest rates of severe reactions coming in those who are metabolically unwell.

Yeah, because I guess none of us have the ability to make any change that moves us towards the other end of the bell curve?!?

Listen, listen……I will always be a person who looks at what I can do. Even the tiniest step forward is still forward. And for a person who literally has had my hand ready and willing to help other parents without judgement for the last decade, yeah I can’t rock with that.

I feel in both cases it was really meant to incite shame and guilt and shut down any discussion that moves out of our comfort zone. This article even talks about the weaponizing of it related to autism and parents advocating on behalf of their children.

So back to the critic.

Being the people pleaser…..these types of things make me want to hole up, become even more of a recluse, never share about the amazing journey our family has been on.

It didn’t matter that some of the participants in Julie’s Nourishing Hope for Healing Kids program had posted in our private group how inspiring the blog was and how much they learned about my family that they didn’t know.

I help Julie moderate the group program and have been open about our journey to a point but my son is 17 so there was a lot of history that I did not go into. It didn’t matter that Julie got other emails talking about how much inspiration and hope our story provided.

It was that one negative response that I focused on.

This is not an isolated instance. Why, why focus on the one negative?

Without getting into a therapy session, I realized it was time to shift some shit.

And then this quote popped into my head, I pulled up the Netflix show and watched with my husband who needed to hear this message for his own reasons. That’s when I resolved to stand in our experience and truth for those who want this message. And so I shared….

This was my favorite Brene Brown quote. And it is what I need to continue to remember.

Unfortunately the critics will always be there. But, why do I care what they think?

I am no longer interested.

My energy is precious.

If I would not go to these people with something special to share or with a problem, why am I giving them space in my head? Someone will always have a judgement about my life and what I am doing. Social media has amplified that.

But at the end of the day, there is reflecting on how you are being perceived and making adjustments based on your own growth and there is allowing people to project their shame or other emotions onto you because your message invokes something in them.

I have written before about the chasm between the autism treatment and recovery community and the neuro-diversity community. I am not delving into that in this blog.

I am so thankful for autism treatment and my son’s recovery so that I can hear his beautiful voice, learn his unique perspective on the world, have a conversation, watch him develop relationships and have interactions he was unable to have prior.

This is not about changing who he is, it is about removing the barriers metabolically that were preventing the full expression.

So at the end of the day, I have to thank that critic. A line in the sand had to be drawn I guess.

While I may go off and lick my wounds from time to time, I will always get my ass right back into that arena. Not just for my child, but for yours too.

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Staying Calm Amidst Chaos – Strategies for Attention, Focus, Self-Regulation

How many of you are looking at a school year unlike any other? ✋

This has been a challenging time not only for our children but for us. And, if I can speak frank for a moment, it has been a time of pulling old strategies, supplements, and tricks out of my hat despite my son losing his official diagnosis of autism.

That doesn’t mean he doesn’t still struggle. And during this time of increase computer time (which is NOT a good fit for his brain) we have had to manage big emotions, frustrations, and stress – on BOTH sides of the desk!

Thanks to JESHOOTS.COM for sharing their work on Unsplash.

The good news is that there are nutrients that can be helpful to support optimal mood and stress response and I want to share some research and products that we use and find helpful. And these are not just for your child. Having children learning at home and juggling my own work takes increased focus, and stress response support. This is way different than when I would home school my children, this is not my curriculum and there is a strict schedule to adhere to. So parents, this is a time to support yourselves as well as your children as the weight of this is squarely on your shoulders right now!

The good news is there is scientific literature on some of the vitamins, minerals, and botanicals that can really provide support. So for those parents wanting to learn more about how specific, targeted nutrients can play a role in attention, focus, self-regulation, and stress response, these are studies you may find interesting.

Focus and Attention:

Stress Response:

The products we have used and like are Focus-Mate & Neuro-Serene, they make a big difference in our overall mood and focus, for my entire family! When my husband takes Focus-Mate in his words he feels “laser focused.” Always work with your physician or practitioner before adding supplements in to your protocol as this blog is for educational purposes only.

Remember to keep those other “tools” in your toolbox handy during this time. Extra movement opportunity is really important for my son. We’ve even started doing deep pressure activities and therapies to help his brain organize more effectively. Outdoor time is also on our daily schedule, just giving his brain a break from electronics is helpful for us along with activities like jumping and swinging. An occupational therapist can provide direction on how/when to employ these techniques. Integration Consultation Services and Sensory Solutions, Inc. are two therapists I know personally and love, both have helped my son and they share great resources and tips!

Pulling back out old interventions isn’t something to be ashamed of! Our children are always changing and adapting (as we are too!) and providing extra support is necessary!

While we cannot always change our circumstances, we can change our response to them. And adequate nutrients enable us to do so easier. May the force be with us all right now. <3

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Chocolate Peppermint Muffins

Muffins. How do I love thee? Where to begin…..

When my son was younger, getting him to eat was a challenge. There were texture issues, sensory issues, food avoidance, food cravings (mostly wheat and dairy products), did I mention food avoidance?

Meal times were more like a war zone honestly.

Until……I mastered the muffin!

When he was little, that meant mini-muffins. I packed as much dense nutrition into the muffin as I could. I made muffins of many flavors, textures, and yes even colors (all natural of course, one funny one came from the chemical reaction between sunflower seeds and baking soda!) I made muffins out of meat, muffins out of veggies, fruits, you name it!

As my kids got older, muffins remained a great way to get good nutrition into them in a form they loved that was easy.

Then I went to batch cooking and I would make double or triple batches of them – for the same amount of time spent – and it would feed them for days. They store nicely in the freezer and can be reheated easily. I use parchment liners which make baking and storing (even double layers on top of each other) a breeze.

Chocolate Peppermint Muffins are a favorite in our house.

These freeze well. As a matter of fact, I almost always have some in the freezer.

They have almost 1/2 egg per muffin and I cut the sugar and replaced with some stevia so there is no loss on sweet but it is not overloading them with sugar at the same time. They are gluten, dairy, soy and grain free.

Note, this recipe does call for either peppermint essential oil (1 drop) or peppermint extract. Before ever cooking with or consuming essential oils, always check with your physician on whether this is appropriate for you and your children. In lieu of that, switch to peppermint extract or simple leave out and just enjoy the chocolate flavor!

Want a downloadable version? Click here to get for one that is easy to print or save.

Comment below when you make these and tell me how you and your family like them!

Amazon Disclaimer:

Terri Hirning is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com. At no additional cost to you, if you purchase certain items linked in this site and blog, she may earn an affiliate commission on certain products. She only links to products she uses and has experience with directly.

FTC Disclaimer:

Some links may be affiliate links. We may get paid if you buy something or take an action after clicking one of these.

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What Autism Recovery Means to Us

When I say the words “autism recovery” or that my son is considered recovered from autism, what comes up for you?

Disbelief

Indignation

Hope

Anger

Maybe a few things come up for you.

When I sat across from a developmental psychologist and heard the words “Your child has autism” over 12 years ago, there were few resources that could provide information on ways to support my child in developing those things that he had just been assessed on:

  • Language
  • Sleep
  • Steroetypical behaviors
  • Eye contact
  • Pointing at objects
  • Seeking us out for things in his environment
  • Responding to his name
  • His frequent meltdowns and hours long screaming bouts
  • Distended belly
  • Constipation
  • Red rings under his eyes

Typically with a diagnosis of most things there is a laundry list of things that come with, things to improve quality of life, at least address symptoms. Not one pediatrician or specialist could tell me why my child stopped sleeping 6 – 7 hours per night and was now only sleeping about 4 hours max per night, 2 hours at a stretch.

They couldn’t tell me why he would obsess over specific items like pushing in the TV buttons to the point they were shoved inside the housing and no longer accessible. Why certain sounds made him scream bloody murder and why he would run around the house pushing all the buttons on the toys that made noise to counteract the offending sounds. His hearing was checked and found to be fine. So why would he not respond when I was just inches away calling him.

Why didn’t he run a fever when he had chicken pox at 6 months and then again at 3 years? And why on the few occasions he DID run a fever did he make eye contact, respond to his name, stop screaming?

Why did he suffer from chronic constipation at such a young age? Why did he prefer to drink milk rather than eat a meal and when he did eat, why did he gag on certain textures, requiring us to puree his foods? Why did he seem to crave wheat and dairy? Why when he got hurt did he not seem to feel the pain?

Why? Why with a diagnosis of autism were all those things just chalked up to “autism”? It was not autism for my son. I want to be clear, this is my son’s story and our journey.

While I did complete an educational doctorate program in traditional naturopathy, I am not a licensed naturopathic physician, medical doctor, or nutritionist. This is my family’s blog and journey and should not be taken as medical advice in any way. I provide my story as hope and things to consider in your own journey. If you need information on physicians and practitioners that I found helpful along the way, I am happy to share those but always work with a qualified medical professional before making any changes for your child or family.

Needless to say, when I was told there was nothing I could do to help my son and that I should consider long-term care as he would likely not be able to live independently, I didn’t listen.

There were things I could do, and did, and when we did, our son began to change, develop, catch up, and excel in ways we were told he never would.

What we did was work with a specialist who understood the various biomedical issues that are often co-morbid with autism (see my resources page). What are some of those?

  • Gut dysbiosis (overgrowth of pathogenic bacteria, parasites, yeast, etc.)
  • Food allergies – intolerances
  • Immune system dysregulation
  • Genetic mutations making it harder to detox
  • Widespread inflammation
  • Infections (viral, bacterial, parasitic)

We did laboratory testing, kept logs of behavior, sleep, toileting, foods, therapies, supplements, and medications. Click here to download my daily sensory and diet log. I created this and found it helpful in logging and communicating important data for updates with our physician, practitioners, teachers, and therapists.

As we made dietary changes and addressed underlying issues (as you would in any diagnosis or medical condition) we saw changes. Better sleep, less constipation, more eye contact, more language were just some of the things that began to shift. All of our providers began to take note and ask what we were doing because of the progress he was making.

It wasn’t always linear, there were regressions and not everything was a home run but we continued to focus on one step at a time and keep moving in the direction of improvements and before we knew it he was hitting goals in therapy and needing less interventions at school!

When it came time to do retesting prior to going into kindergarten, his CARS evaluation showed him not in the “autistic range” whereas when he started in our local school district in their autism-specific preschool environment, he had scored in the “severely autistic” range. So when I speak of autism recovery, I speak of making medically directed, evidence-based interventions as needed for my son uniquely which resulted in the loss of the behavioral diagnosis of autism. Since autism is diagnosed based on behaviors and not underlying lab values, we use those same behavioral characteristics to determine progress in the school and therapeutic setting.

When looked at in this way, addressing the biomedical issues with a skilled physician allowed my son to gain language, sleep better, have and sustain eye contact, have regular bowel movements, reduce meltdowns, eat a wide variety of foods, including challenging textures that he previously could not eat, interact with his family and peers in a socially appropriate way, attend to school tasks, meet developmental milestones, meet and exceed therapeutic goals. There were very real biomedical “road blocks” to us hearing his voice, understanding his perspective. Once removed, the floodgates opened to a new perspective on who our son really is.

For our family, autism recovery is not wanting to change who my son is. It was about finding ways to support his overall health and wellness – that was going overlooked and being lumped into autism by other professionals. By addressing things through functional and integrative medicine, we saw the behavioral indicators associated with autism shift as a result as well.

Now, rather than changing my son, I get to see who he is, hear his sense of humor, talk to him about his unique perspective and view of the world. Before, I was unable to have a back and forth conversation, he was in physical pain that he was unable to express, he had a very hard time handling the stimuli of the world. His sensory needs reduced, his auditory processing delays and sensitivities improved, he can navigate the world with greater ease.

The picture above is of us last year, walking down the busy streets of San Francisco. He flew on an airplane to get there, slept in an unfamiliar hotel, ate out frequently, dealt with crowded airports, BART stations, streets, and shops. This would have been impossible years ago.

Family experiences, travel, calm, love, connection, joy. That is what autism recovery means to us.

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