Parent Guidance
Picture up close of Ellie Irise
Asking for Support During Hospital Visits
Hospital visits, blood work, and procedures can be stressful for kids and parents. You’re allowed to ask for support so your child feels as safe and comforted as possible.
- Ask if a Child Life Specialist is available. They’re trained to help kids cope with medical procedures using play, clear explanations, and coping strategies.
- Let staff know what helps your child feel calmer (a favorite song, a stuffed animal, a tablet, or a specific comfort routine).
- Ask for distraction tools, like bubbles, light-up toys, or a tablet with games or videos.
- Ask if a buzzing device (like Buzzy Bee) is available to help distract from needle pain.
- Ask if numbing or freeze spray can be used on the area before blood work or injections, when it’s safe and available.
- Ask for help with positioning — for example, having your child sit on your lap, or using pillows or supports so they feel more secure.
- If your child has sensory needs, ask about sensory accommodations (dimmed lights, quieter space if possible, extra time, or fewer people in the room).
You know your child best, and it’s okay to speak up and ask the team to slow down, explain things, or adjust the plan so your child feels more supported.
Parenting Tip: When the World Gets Loud
Noise-reducing headphones can help in busy places. Crowded stores, loud restaurants, or busy family events can be a lot for some kids. Bringing noise-reducing headphones can help your child stay calmer and feel more secure when the world gets loud. Even if they only use them for a few minutes, it can make outings smoother and less stressful for everyone.
Ellie wearing Headphones, hands over them.
Light Therapy Boxes (lamps)
Because Ellie has no light perception, her body doesn’t naturally receive the signals that tell most of us when it’s day or night. Her internal clock can get really confused, which is actually common for many blind children.
When Ellie was younger, before we had access to sleep supports or medications, one thing that helped us get through some really difficult months was light therapy.
In the mornings, we would sit Ellie close to a bright light for about 15–30 minutes, and then we would do it again later in the afternoon.
Over time we started noticing something interesting by around 4–5 pm,
Ellie would begin to get tired instead of being wide awake like usual.
Some research suggests that even without vision, the body can still detect light
through pathways beyond the eyes that help regulate our circadian rhythm
(our sleep–wake cycle).
The science is still evolving, but for us it helped give Ellie’s body a bit of a
daytime signal. Sleep is still a struggle for us, and every child is different.
But during a time when we had very few options, light therapy helped guide
Ellie’s body toward a rhythm and got us through some really exhausting months.
If you’re a parent navigating sleep with a blind child , you’re not alone.