The Finish Line

What They Don't Tell you Leaving NICU/PICU or Receiving a Special Needs Diagnosis

When you face extreme prematurity and endure a long stay in neonatal and pediatric units, you push yourself tirelessly to get out—to finally get home. It’s easy to believe that home is the finish line. But in reality, it’s only the starting blocks. You’re just edging your foot into position, adjusting your stance, before the gun fires. And then, in an instant, you’re catapulted into what feels like a sprint—only to realize it’s actually a marathon.

Photo by Nik on Unsplash

Recently, I had a check-in meeting with Michael’s Educational Psychologist—the hero who was the first to diagnose his primary inhibitor to learning: a severe speech and language disorder. She was the one who told us what we needed to do—where to move, which school to get into, and how to shift our entire way of life. That meant leaving behind the hectic, stressful existence of London for a calm, nature-filled, fresh-air haven.

We reflected on that shift and the wonders it has done—not just for Michael, but for our whole family.

We are the lucky ones. We identified Michael’s learning barriers when he was just three years old and moved our world to get him the highest level of support by four. Our story is rare, and it’s one riddled with privilege—privilege of resources, access to therapists, psychologists, and specialists. My dream is for every family to have this level of access. While I may not be able to make that a reality for all just yet, what I can do is share the most important lessons I’ve learned along this unexpected marathon—hoping they might help others, too.

1. Leaving the hospital is only the beginning. You’re exhausted. You’re relieved. You think you’ve made it. But you haven’t—not yet. Coming to terms with that will be excruciating, but it’s necessary.

2. Do the inner work first. If therapy isn’t accessible to you, try this exercise on your own:

a. Write a list of the expectations you had for parenthood (e.g., I will be a firm parent and not let little things slide).

b. Write a list of expectations you hold for your child (e.g., They will go to university, they will marry, they will have children).

c. Now, write down the exact opposite of each statement: I will be a gentle parent, seeking to understand why my child pushes boundaries or My child may not go to university but instead gain work experience or attend a specialist school until 23.

d. Reflect on these opposites. The future may look different from what you once envisioned. Over time, this reflection will feel less painful, and you’ll feel liberated from expectations you didn’t even realize you had.

3. Missing milestones is a major red flag—don’t overlook it. While every child develops at their own pace, missing or significantly delaying multiple milestones is a sign to talk to your pediatrician. Milestones matter.

4. Trust your intuition. I strongly believe one of the ways God speaks to us is through a mother’s intuition. If something feels off—even if no one else agrees—trust your instincts. This child was once part of your body. Your body knows.

5. Early intervention is everything. The earlier and more intensive the intervention, the better the long-term outcomes. Don’t wait. Michael started speech therapy at 14 months, but in hindsight, I should have started as soon as he left the hospital.

6. Identify the primary inhibitor to learning. Children with complex developmental needs often have multiple barriers to learning. An Educational Psychologist can help pinpoint the primary inhibitor so you can focus on what matters most first. (If you need an assessment, don’t wait—NHS waits are long, get on the list asap, and, if you can afford it, private assessments can be life-changing.) For us, this meant choosing a highly specialist speech and language school. Now that language is developing, we can start addressing secondary and tertiary challenges.

7. Home and school must work together. Whether your child is in nursery, with a nanny, or in school, it’s critical that the strategies and therapies being used in those settings are also reinforced at home. A fully integrated approach leads to faster progress and a more regulated child.

This marathon is a team sport—lean on your partner, family, and carers. They’ll be your cheerleaders and your shoulders to cry on when it’s all too much. The sooner you accept that this journey may look different than you imagined, the more empowered you’ll be to make the best choices for your child. Trust your instincts, seek early intervention, and build a strong support system. The road is tough, but it’s also filled with resilience, growth, and love—if you let it. You are not alone, and with each step, you’re giving your child their best chance to thrive.