Show Notes
"What do you do when you’re told your child is 1 in 740 million?" In this episode ofSpecialness, we dive into one of the most pivotal moments in our parenting journey: receiving the results of Cason's genetic testing. The discoveries? A rare chromosomal deletion (15q25.2), unknown mitochondrial mutations, and a list of conditions that left us with more questions than answers. 💡In this episode: The emotional rollercoaster of waiting for genetic testing results What it’s like to parent a child with an ultra-rare condition The balancing act of managing diagnoses, symptoms, and treatment plans ✨ For any parent navigating a special needs journey, this episode is a reminder that even in the unknown, there’s validation and hope to be found. 📺 Watch now on YouTube, Spotify, and Apple Podcasts! 👉Link in bio #ParentingJourney #SpecialNeedsParenting #RareDiseases #SpecialnessPodcast #AdvocatingForYourChild
More from Specialness Pod
Last week we talked about what people say to special needs parents. This week we flip it. These are the things we wish people understood, the ones that would change everything if they just landed. Jeff and Kim go down their own list. That the cost of raising Cason is not 18 years, it is a lifetime. That they still do everything for a 25 year old, from the medication to the toenails. That the smile you see in public is often covering a burnout they have learned to mask. That most special needs parents carry a kind of PTSD, except unlike a soldier, they never get to leave the battlefield. And that none of this, not one word of it, means they love their son any less. This is not a list of complaints. It is an honest look at a life most people never have to see, from two people who have lived it for almost 25 years.If this episode helped you feel a little less alone, subscribe and share it with a family who needs it. New episodes every week. #SpecialNeedsParents #SpecialNeedsFamily #Caregiver #SpecialNeedsMom #TheSpecialnessPodcast
Can't you control your child? You're so strong, I could never do it. God doesn't give you more than you can handle. Every special needs parent keeps a running list of the things people say, and this week we are going through ours.Jeff and Kim get into the comments they hear from strangers, friends, and family. What they want to fire back in the moment, and what they have learned to say instead to actually educate the person in front of them. They also name the comment that stings the most, the one quietly hiding inside all the others: I'm just glad I'm not you.And they end on the thing they wish people would say. Not "how is your son," which they can answer in their sleep, but "how are you." If you have ever been called strong on a day you were barely holding on, this one is going to feel like someone finally gets it.If this episode helped you feel a little less alone, subscribe and share it with a family who needs it.#SpecialNeedsParents #SpecialNeedsFamily #Caregiver #SpecialNeedsMom #TheSpecialnessPodcast
For most people, isolation is a choice. For special needs families, it isn't. It happens to you, and it comes wrapped in a grief that has no recognizable end.
In the mental health world, there is no blood test. No x-ray. Just a subjective judgment that changes from one doctor's office to the next, and a family left to live with the consequences.Jeff and Kim get honest about the part of special needs parenting that society files under "dangerous" or "crazy" and refuses to take seriously. They walk through Cason's mental health journey from the beginning: the manic behavior at four, the neuropsychologist who suspected bipolar one, the renowned psychiatrist who dismissed it as "just ADHD," and the medication trial and error that made everything worse. They also share the terrifying hospital day that no parent should have to fight through, and why the words "he's too young for that" cost their family years.This is a conversation about stigma, about a mental health system that is easy to be failed by, and about why our own community has to be the place understanding starts.If this episode helped you feel a little less alone, subscribe and share it with a family who needs it.#SpecialNeedsParents #MentalHealth #SpecialNeedsFamily #Caregiver #TheSpecialnessPodcast
When people hear the word grief, they think someone died. For special needs parents, the grief is different. It's the life you planned for and never got to live, and it doesn't fade. It compounds. In this episode, Jeff and Kim talk openly about the grief nobody in the special needs world seems allowed to name. The milestones that never come. The family gatherings where the gap becomes impossible to ignore. The jealousy that shows up watching friends drop their kids at college. And why, after almost 25 years, the grief has actually gotten heavier, not lighter. If you have ever felt guilty for grieving while still loving your child with everything you have, this one is for you. You have permission to feel it. #SpecialNeedsParents #SpecialNeedsGrief #SpecialNeedsFamily #Caregiver #TheSpecialnessPodcast