Podcast Summary: The OCD Stories — Episode 490

Jan Stewart: A Parent’s Journey Raising Children with OCD and Neurodiversity

Host: Stuart Ralph
Guest: Jan Stewart
Release Date: June 15, 2025

Overview

In this episode, mental health and neurodiversity advocate Jan Stewart joins Stuart Ralph to share an unflinching account of raising two children—Andrew and Ainsley—each with multiple mental health and neurodevelopmental diagnoses, including OCD, autism, Tourette syndrome, and ADHD. The conversation covers Jan’s journey as a parent, building hope and resilience amidst adversity, the crucial lessons learned about family partnership, managing school and work environments, and the importance of communication, advocacy, and self-care for parents and caregivers.

Key Topics & Insights

1. Jan’s Parenting Story & Early Signs

[02:47 - 13:58]

• Jan describes a family unprepared for adversity, coming from supportive backgrounds but with little exposure to neurodiversity or mental illness.
  • “Our story really is one of what I call OCD plus.” (B, 02:52)
• Early signs in Andrew: poor self-regulation, compulsive behaviors, challenges with change, regressive behaviors.
  • “He touched walls repeatedly for hours, couldn’t put on his socks or go through doors for 20, 30 minutes…” (B, 06:26)
• Diagnostic journey: Frustration with professionals’ dismissals finally gives way to relief after Andrew’s diagnosis at age 9 (OCD, autism, Tourette, ADHD, anxiety, learning disability).
  • “For me they were such a relief. They validated all our concerns and they started me to be able to go down the path to be proactive and get him the right help.” (B, 08:52)

2. Navigating Treatment and Modifications

[09:28 - 13:58]

• Medication was crucial to enable participation in therapy (ERP and other therapies).
• Treatment had to be individually tailored to accommodate Andrew’s ADHD and autism traits—including modifications such as outdoor walking sessions instead of sitting in an office.
  • “This ERP therapist also understood that with Andrew’s ADHD, he could not sit still in his office. They would go outside and walk around or go to a restaurant or do whatever they had to do.” (B, 10:50)

3. The Family as the ‘Patient’

[11:55 - 13:58]

• Jan stresses that the patient is not just the child but the entire family, referencing psychiatrist Peter Szatmari.
  • “The patient is in fact the whole family. That’s so critical. First, I had to learn not to accommodate the OCD along with David and Ainslie, but then I became Andrew’s treatment partner, and I still am today.” (B, 12:39)
• The concept of partnership—between all caregivers, schools, and later, employers—repeats throughout the episode as vital to success.

4. Distinguishing OCD from Autism Rituals

[13:58 - 17:38]

• Open communication from an early age helped Andrew separate himself from his OCD.
  • “We separated him from his OCD and other conditions, so his identity wasn’t only tied to them…” (B, 14:56)
• Clear explanation of differences: Autism rituals are self-soothing, OCD rituals are driven by distress from intrusive thoughts.
  • “The key fundamental difference is the reason for these behaviors. In autism, these behaviors can be soothing, self-regulating. … Where as in OCD… those intrusive thoughts are terrifying, disturbing, the child wants to get rid of them.” (B, 16:28)

5. Advice and Key Principles for Parents and Caregivers

[18:20 - 23:38]

• Research: Stay informed, but verify all sources with qualified professionals. Myth-busting is essential.
• Communication: Open, transparent conversation with both affected children and siblings is crucial.
  • “Don’t forget siblings. They’re just as needy, but it’s very hard intellectually. … We started spending whatever time we had, and it was tiny, one on one with her [Ainsley].” (B, 20:58)
• Partnership: Insist on integrated care across all professionals, school staff, and—later—workplaces.
• Reset Expectations: Life may not unfold as planned, but adjusting expectations and boundaries—especially with critical friends/family—is vital.

6. Protecting and Strengthening Family Relationships

[23:38 - 28:56]

• Challenges of parenting/life stress on partnerships; advice includes supporting one another, using humor, and sometimes scheduling time away from parenting duties.
  • “The key: give each other the benefit of the doubt. Know that your partner is really trying their best even if it’s not what you would do. … Don’t forget humor again.” (B, 24:17)
• Stuart’s suggestion: Setting boundaries around “illness talk”; Jan’s pragmatic counterpoint—“I think what’s worked better for us is to carve out part of our life as our own, away from each other and away from the kids.” (B, 26:41)

7. Self-care for Parents

[28:10 - 30:11]

• Stuart: Self-care is not a luxury, but essential for effective parenting.
  • “It’s not even a nice to have. It’s crucial…” (A, 28:12)
• Jan shares hard-earned wisdom from her own health crisis, now prioritizing even small moments for herself, from exercise to support groups.
  • “For me, I don’t care whether you go to a healthcare professional, but for me it’s parent support groups that have always been so reaffirming…” (B, 29:18)

8. Advocacy, Boundaries, and Collaboration with Schools & Employers

[30:11 - 38:47]

• Establishing communication with professionals and schools was key; always involve the child in these discussions where appropriate.
• Schools and workplaces need to be true partners—if not, consider making a change.
  • “If the school isn’t open with what’s going on… then you need to make a change.” (B, 36:14)
• Andrew’s employer is a model of inclusion—educational in-services, job coaches, and ongoing dialogue.
  • “They customize accommodations for him. What they get in return is an employee who is loyal, who is valued, who wants to stay there till he’s 70 and be the best employee, not the best disabled employee.” (B, 38:06)

Notable Quotes & Memorable Moments

• “Our story really is one of what I call OCD plus.” (B, 02:52)
• “The patient is in fact the whole family. That’s so critical.” (B, 12:39)
• “We separated him from his OCD and other conditions, so his identity wasn’t only tied to them...” (B, 14:56)
• “You have to reset the expectations for your life. It may not be as planned for or hoped for in many ways, but if you accept it, then you can move forward.” (B, 22:04)
• “Celebrate each success, no matter how small.” (B, 23:20)
• “Don’t forget siblings. They’re just as needy, but it’s very hard intellectually. … We started spending whatever time we had, and it was tiny, one on one with her.” (B, 20:58)
• “If you’re going through hell, keep going.” (B, 39:24)
• “You are your child’s future champion and warrior, and you do your best.” (B, 41:30)
• “Don’t go through mental health concerns alone. Persevere and have hope.” (B, 40:18)

Timestamps for Important Segments

• 00:00 - 02:05: Introduction of Jan Stewart and episode themes
• 02:47 - 13:58: Jan’s family history, early signs, and diagnostic journey
• 13:58 - 17:38: Distinguishing between OCD and autism; the importance of communication
• 18:20 - 23:38: Advice for parents—research, communication, partnership, and expectations
• 23:38 - 28:56: Relationship strain; importance of self-care and humor
• 30:11 - 38:47: Partnerships with professionals, managing school and workplace relationships
• 38:56 - 41:41: Words of hope, closing reflections, key takeaways
• 41:41 - 43:15: About Jan’s book Hold On: A Parent's Journey Raising Children with Mental Illness and her advocacy work

Closing Advice & Hope

• “There have been so many times where I felt I’ve been punched in the stomach. And just as I’m about to get up, another swing comes at me hard. You know, it is an endless roller coaster, but with grit, determination and perseverance. Whether you have OCD yourself or whether you’re a parent and caregiver, you can succeed. We have to remember, no one is alone. There’s help, there’s hope, and we are all more than enough.” (B, 39:24 - 39:59)

Book & Resources

• Book: Hold On: A Parent’s Journey Raising Children with Mental Illness by Jan Stewart
• Jan’s advocacy work: Chair of the largest autism service provider in Canada; active at IOCDF and other organizations.
• Practical insight: Thirteen key learnings shared in Jan’s book to aid other parents and caregivers.

For Further Information

• Check show notes for article links and Jan’s book
• Support groups, IOCDF resources, and up-to-date research recommended

This episode offers a relatable, candid, and insightful perspective for any parent or caregiver navigating the complexities of OCD and neurodiversity within their families. Jan’s story models resilience, communication, and hope, emphasizing the power of partnership and the importance of prioritizing self-care and advocacy.