Deciding What Is Urgent When Raising A Neurodivergent Child

Last week, I hit a wall đź« 

There is so much happening in our country and around the world – and it is devastating. 

I haven’t been able to focus, everything feels urgent – and I feel powerless to help. 

Add to the devastating news cycle, the daily decisions:

→ What to make for dinner.

→ Gotta follow up on the Medicaid waiver denial.

→ Shoot – there are huge cuts to services for people with disabilities in our state.

→ Crap, I need to follow up with the expert presenter for next week. 

→ Gotta remember he has an eye appointment this week. 

→ Damn – I never followed up on the ENT referral for him.

→ And he wants his driver’s license… That’s a whole new fresh set of anxiety… if he fails, if he passes, other drivers on the road…

I feel like I can’t breathe. 

Graphic reads: Five Affirmations for Caregivers Overwhelmed with Decisions: 1. It's the system that's broken - not me, and not my child. 2. My confusion is valid. These systems are not built for clarity. 3. I am allowed to learn as I go. 4. Needing support does not make me weak - it makes me human. 5. I don't need to make all the decisions right now. Graphic is set on a light yellow background and the Experiential Life logo sits in the top right corner.

Everything feels urgent - and it’s just too much

So… as one might do when faced with impossible decisions, that hit in rapid succession… I froze. 

I couldn’t stay focused on just one thing – even the thing right in front of me – because they are all right in front of me…

All the time. 

Demanding my attention… along with C, asking if I could please sew up the hole he put in his Captain America plushie, for the tenth time in as many minutes.

Why we jump into “Panic Mode” or “Freeze Mode”

I know what’s happening – it’s a pattern I see over and over again with families raising neurodivergent kids. 

👉 Sometimes it hits after a well-visit when you’re handed 5 referrals to different therapists and specialists. 

👉 Sometimes it hits after an IEP meeting when the team presents goals that just don’t sit right in your stomach. 

👉 Sometimes, it’s coming home after a really long day and having to decide what to make for dinner and then actually making it. 

On the left is the Experiential Life Logo, followed by: Caught between making every decision... or... none - because there are too many when you're raising a neurodivergent kid. On the right is an image of Christy (Founder and CEO of Experiential Life) wearing a blue denim button down shirt and her shortish brown hair hanging over her shoulders. She is talking with the camera catching her mid-sentence. Her hands are raised in front of her as if emphasizing a thought.

We either panic – jump down the research rabbit hole and start making calls and decisions as if tomorrow will never come…

Or 

We freeze – we make no decisions because no matter how hard we try, it feels literally impossible. We don’t know where to start… and if we’re being honest with ourselves, we’re not entirely sure how.

Both are responses to the same problem – too many decisions, with no way to tell which ones really matter right now.

I’ve worked with over 1,000 families, and every single one of them, at some point in time, hit this inflection point. 

I’m pretty sure my therapist would say that it is a natural response to your overwhelmed nervous system. 

The one question that breaks the pattern

Graphic reads: Before you make any decision... ask: What does my neurodivergent child need most right now?

Yesterday, after feeling like not doing anything was not serving me – or this community we’re building…

I asked myself the question I always ask families I work with:

“What do you need most right now?”

Prioritizing what I need to do, what I want to do, and what can wait. 

I decided to focus on what is the most urgent thing on the list of a ton of things I need to take care of for C. 

Highest on the list – appealing his denial for Medicaid waiver services. 

I emailed an organization that will help me with the appeals process. 

It didn’t solve all the problems – or help make all the decisions…But it helped me focus on one goal, one action, one potential problem solved.

Appealing the denial of services has been my biggest stressor – especially given all the changes to Medicaid (federally and in my home state of Maryland). 

Once I named what was causing me the most stress (denied services and supports) and why it felt so hard to follow up on (changes to Medicaid broadly) – it allowed me to focus my energy. 

Decision fatigue or decision paralysis comes when we have too many decisions to make, all at once, and they all feel urgent – and we can’t seem to prioritize them. 

Once I was able to identify what I needed – I was able to continue down the line of competing priorities and make a list based on level of importance (and how easy they are to just check off). 

The appeal is the one with the closest and most urgent deadline. It had to come first. 

And it feels hard because it is hard – I have to understand the process, what happens next, and what my choices are…

I need someone who understands and can help me through the process – someone who works in that system and understands the rules. 

When you’re raising a neurodivergent child, you don’t have the luxury of not making the decisions… and delaying decisions can feel like you’re failing your child. 

So we get stuck.

But I think what we often fail to remember is that not every decision has a hard deadline.

Not every decision is urgent.

And not every decision will help us with what we need most right now. 

So if you’re feeling frozen – not lazy, not failing, just overloaded – start with one question:

“What do I need most right now?”

And that my friends is why Experiential Life exists…

To help in the “in-between” moments. 

When you feel the urge to research just one more thing before bed…

Or when the IEP team sends the Prior Written Notice and you just need a gut check. 

When the pediatrician hands you 3 new referrals, and you don’t know who to call first or what to say when you call. 

Or when you read an article that says your state is cutting over 10M from disability services, but you aren’t sure what that means. 

One place. Less overwhelm. More support.

We saved you a seat

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