Facing it Together: Parenting Kids with Autism + Type 1 Diabetes, With My Husband Scott - PART 2
Telling our family I was pregnant on Halloween with a baby skeleton on my sweater.
Has your parenting experience gone differently than you thought it would? Us too.
Welcome to Part 2 of my conversation with my husband Scott, where the discussion turns to parenting kids with disabilities.
In this episode we discuss:
[00:54] - Navigating the grief and life-changing impact of our child's diabetes diagnosis
[13:19] - A father's perspective on our kids' PDA autistic burnout
[18:05] - Maintaining a Relationship while parenting children with high support needs
[32:21] - Processing an autism diagnosis
Get ready for a heartfelt dive into parenting kids with autism and type 1 diabetes, from a dad’s perspective.
More of a reader? I got you… Here are some of the main takeaways from our conversation:
Parental grief in the wake of a child's type 1 diabetes diagnosis
In a couple of months, we'll hit the two-year mark since our son's diabetes diagnosis. When I met with a therapist post-diagnosis and shared my feelings, my therapist noted, “It sounds like you're grieving.” It was a reminder that grief can stem from situations beyond losing a loved one.
Research for this episode led me to several studies that explore parental grief after their child’s diabetes diagnoses. In the abstract of one study, it said “parents of children with type 1 diabetes may experience a grief reaction at diagnosis similar to that normally associated with bereavement.”
It also noted that the grief is long-lasting. They interviewed parents of children with type 1 diabetes seven to ten years after diagnosis, and they found that while parents had adjusted to the new normal of diabetes management, “most had not ‘come to terms’ with the diagnosis.” Throughout their child's life, they experienced a resurgence of grief, and even 7-10 years later, some of the parents became upset during the interviews.
Navigating the grief and life changing impact of our child's diabetes diagnosis
Unexpected Realities: The initial days post-diagnosis were a whirlwind. It took time to grasp the enormity of the situation.
Life-Altering Moments in the Hospital: The hospitalization brought forth a stark realization—that our lives would never be the same. From learning insulin dosages to counting carbs to all the finger pricks and shots–our lives were changed forever.
The New Normal: There was a big learning curve, but overtime, we’ve adjusted to living with diabetes. Moving from finger pricks and shots to the use of advanced technological devices–cgm and insulin pump–made life with diabetes a little easier.
Navigating Emotional Currents: Grief manifested differently for each of us. While waves of grief hit Megan with poignant intensity, Scott finds solace in living in the moment. The hardest part is witnessing our child’s sorrow, emphasizing the importance of emotional support.
Teamwork in Diabetes Management: Working together in diabetes management, demands effective communication. Tag-teaming responsibilities and the constant learning curve reinforced the importance of open dialogue in the intricate dance of diabetes care.
A father's perspective on our kids' PDA autistic burnout
Pathological Demand Avoidance (PDA) + Burnout: A feature of PDA is a sensitive threat response. Burnout happens when a pda autistic person’s nervous system gets overwhelmed due to a perceived loss of autonomy too many times. This stress builds up until it goes beyond the person’s ability to handle it. At this point, they might frequently feel the need to fight, flee, or freeze. It can lead to difficulties in meeting basic needs like using the bathroom, eating, sleeping, or maintaining personal hygiene. In some cases, they might find it challenging to leave their room or the house.
Unforeseen Challenges: The onset of PDA autistic burnout in both boys added an unexpected layer to the challenges our family was already navigating, particularly after our son's diabetes diagnosis and a swift move out of state.
Wading Through Uncertainty: Back then, we were in the thick of it, trying to make sense of what was going on with our boys while juggling everything else.
Coping with Rapid Changes: Life threw a lot at us—diabetes, a job change, moving, pda autistic burnout–all at once. The quick pace of all these life-changing events, left little room to process individual challenges. Each change seemed to compound the complexities of the others.
Healing Takes Time: We had control over things like moving. But, we couldn’t control when our boys would come out of burnout, highlighting the unpredictable nature of the healing process.
Long-term Impact: Looking back, those crazy months left a mark. While things are a bit better now, the impact of PDA has always been a part of our parenting journey and shapes how we navigate parenthood.
Maintaining a relationship while parenting children with high support needs
Challenges Before Diagnosis: Even before an official diagnosis, parenting was challenging, breaks were scarce, and leaving the kids with others was difficult.
Unique Struggles: The nervous system disability aspect, particularly in PDA (pathological demand avoidance), adds unique challenges. Unlike anxiety, where exposures can help build tolerance, with PDA, exposures don’t build up tolerance and can instead cause trauma. PDA kids may feel safest only with their primary caregiver.
Limited Couple's Time: A lack of breaks or couple's trips due to the children's needs and burnout can intensify challenges. Finding time for dates becomes tricky, requiring intentional efforts to maintain the relationship.
Home Work Perk: A benefit of working from home, is frequent opportunities to connect, even if just for a few minutes during a busy day. Waking up early or calling during lunch breaks helps maintain a connection amid a hectic schedule.
Adaptation and Communication: Constant adaptation and intentional communication are crucial. Despite the day-to-day busyness, making time for each other, even in small increments, fosters a sense of connection. Communicating frustrations and emotions is vital for understanding each other's perspective.
Supporting the Preferred Parent: Recognizing and discussing the weight on the preferred parent, handling most caregiving duties, was crucial. Dealing with challenges without defensiveness helped find solutions and offer much-needed support.
Trial and Error: Dealing with high-support needs is an ongoing process of trial and error. Resistance and inconvenience are natural reactions, but maintaining open communication and adapting to challenges contribute to a healthier relationship.
Empathy and Understanding: Developing empathy for each other's roles and the unique struggles of parenting high-support needs children is essential. Understanding that everyone has a lot on their plate fosters a supportive environment.
Realism in Expectations: Realizing that there is no perfect or seamless solution, and some days will be harder than others, helps in managing expectations. Flexibility, understanding, and a willingness to navigate challenges together are key components of a resilient relationship.
Processing an autism diagnosis
The Diagnosis Wasn’t Earth-Shattering: Suspicions were already there, so the confirmation felt more like a validation. Nothing instantly changed in our daily lives.
Random Realizations: The realities of the diagnosis hits in everyday experiences. Take, for instance, moments during financial planning, contemplating the uncertainties of the kids' independence in the future, and strategizing how to navigate it. Instead of a constant reflection, Scott experiences these impacts unexpectedly. Small instances spark reflections on the distinctive aspects of our kids' journeys, such as not participating in sports – not inherently positive or negative, just a unique difference. Daily inconveniences and PDA accommodations can highlight the impact of our parenting reality.
Facing it together
From dealing with the shock of a diabetes diagnosis to figuring out how to handle PDA burnout, our family's been through a whole mix of emotions and changes. What's really held us together is sticking it out as a team, talking things out, and really trying to get where each other is coming from. These bumps in the road haven't knocked us down; instead, they've brought us closer, helping us really treasure this parenting adventure. Moving forward, we're leaning into the unique paths our kids are on, finding strength in our togetherness and comfort in the story of how we keep bouncing back, together.
Let’s Connect
Thanks for being here as we heard a dad’s perspective on parenting kids with autism and type 1 diabetes!
I'd love to hear from you. What’s been unique about your parenting journey? How do you and your partner navigate it? You can send me a DM or leave a comment on Instagram.
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Resources
I just wanted to share some of the resources that have been helpful to me as we’ve navigated Type 1 Diabetes + PDA.
Resources For parents of Kids with type 1 Diabetes:
The Juicebox Podcast has so much great info about managing diabetes! (I especially love the Pro Tip series and the Bold Beginnings series.) And, they have a private Facebook group that’s really helpful too!
Risely Health offers self-guided, group and 1:1 coaching. We haven’t done coaching yet, but even their free resources (such as the blog, the Reclaim Your Rise podcast and their free downloads such as the Blood Sugar Hacks for Parents of T1D Children Free Guide) have been very helpful!
Type One Together - I love their free resources, such as their Instagram and The 108 Podcast, but they also offer courses (they even have a course specifically for grandparents - genius!), a T1D Babysitter list, and 1:1 coaching.
Diabetes Nerd Youtube channel has great info! And the creator behind it—Ginger Vieira has had diabetes since 1999 and has written several books and articles on it. In fact, we were given this one when we were in the hospital. She also shares lots of good info on Instagram.
Another Youtube channel with lots of good info is Diabetech and he also has an Instagram with lots of good info.
A few more of my favorite diabetic Instagram accounts:
@lauren_bongiorno - the founder of Risely Health, I love her empowering attitude!
@thebetes - he’s made so many informative videos, and I love his positive, kind outlook!
@lifeonsweetstreet - this sweet family has THREE kids with Type 1 Diabetes! This was one of the first accounts we found after diagnosis, and really helped us feel less alone!
@encouraging_diabetes - this family has two kids with diabetes, and the mom has a great sense of humor and is so relatable.
@arianafrayer - I love that’s she’s Vegas-based and a graphic designer (we used to live near Vegas and I do web design), and she makes fun videos.
Resources For parents of PDA’ers:
atpeaceparents.com - Casey Ehrlich (pda researcher, mom of a pda'er, and parent coach) is hands down my favorite resource for pda families. We took her Paradigm Shift Program last year and it was a complete game changer for learning how to parent pda kids. And even her free resources (like her Instagram and her podcast are amazing. Also, before I invested in the full program, I bought her Burnout Masterclass and Grandparents and PDA Masterclass and they were both great!
PDA Parents Podcast - another podcast by Casey Ehrlich and another pda mom. I binged all the episodes and cried through each one—it was the first time I really could relate to others’ parenting experiences—finally, I felt seen. And the pdaparents.com website has a resources page with a long list of great resources!
@lowdemandamanda - Amanda Diekman shares a lot of helpful information and beautiful thoughts on Instagram. I also took a course of hers on low demand parenting years ago, and I’m not sure she still does that specific course, but she now offers a Low Demand Masterclass, Mastermind, and a book. My favorite things I learned from her course was learning to meet my needs without asking anything too hard of my children and “true drops.” Such gems.
Declarative Language Handbook by Linda K. Murphy - declarative language is so helpful for communicating with pda kids. I learned about declarative language awhile ago, but then I read this book and I still learned a lot! It’s an easy, quick read and I highly recommend it, even if you’ve already started learning about declarative language.
PDA of North America - this page has lots of resources, and I’m especially grateful for the pda-affirming providers list (scroll down the page a bit to see it) which helped us find an AMAZING neuropsychologist for my kids. Working with someone that understands pda and is neurodiversity-affirming has been an amazing experience for us!
@_kristyforbes - Kristy Forbes continues to stretch my mind with her thoughtful insights on Instagram. I’ve also taken a masterclass of hers regarding schooling and pda kids that was interesting. She has multiple programs and masterclasses to support neurodivergent people and their families. She also has a podcast and I’ve appreciated what I’ve learned and read on her blog.
Beyond Behaviors by Mona Delahooke - recommended to us by our neuropsychologist and I really appreciate how the book uses brain science and compassion to better understand children’s behaviors. Also, check out Mona’s instagram and her other book Brain-Body Parenting for more.
And, since it’s getting late and my kids are calling, a quick round-up of a few others to check out:
@themotherload.nd.sleep - pda sleep expert
@afshantaflar - nervous system coach for moms of high needs kids (I’ve attended a masterclass with her and it was so good!)
@revisionist_exploration - former bcba (behavioral therapist) and pda mom
@rabbishoshana - PDA mama of a PDA kiddo and coach for parents and late-diagnosed autistics. (Love the info she shares on her Instagram!)
@donna_georgen_ - one of the parent coaches in the Paradigm Shift Program. She is lovely! And I loved learning from her! She’s an expert in pda tweens/teens, adults, and complex cases.
@learnplaythrive - neurodiversity affirming therapy continuing education, and check out her podcast Two Sides of the Spectrum!
@theneurodiversitymom - pda parenting + autistic mom
@lindsayisdoingherbest - such good info on her Instagram and she supports parents of pda kids
@everydaypda - pda advocate, coach & educator
Disclaimer: The information shared in this podcast & the show notes is for informational purposes only and is not a substitute for professional medical advice. Consult your physician before making any changes to your health plan. The host, Megan, is not a healthcare provider. Always seek guidance from a qualified health professional for your individual needs.