“Our Autism Sleep Journey: Practical Tips and Lessons Learned

Published on 14 November 2024 at 18:11

Sleep is one of the struggles for a lot of families 💤💤💤💤😴😴😴

There are things to help I will share some below. 

This is not a substitute for medical advice. And before trying any supplements or medications please always consult with your doctor. 

 

Our Sleep Journey: The Early Days

 

Sleep challenges have been part of our lives since Emily was a baby. From colic to bedtime struggles, we’ve tried countless strategies to help her—and us—get some much-needed rest.

 

Colic and Early Struggles

 

When Emily was a baby, she struggled with colic and rarely settled well. Looking back, there might have been some deep pressure-seeking behavior involved, but at the time, we didn’t recognize it. Here’s what helped us cope during those tough early years:

 

Bottle Changes: Switching her bottles helped with colic, but sleep remained elusive.

 

Baby Carrier: Walking the hall or stairs with her strapped to our chest was the only way to soothe her.

 

 

As She Grew

 

The sleep challenges evolved as Emily got older. We moved to:

 

Rocking Her to Sleep: This worked occasionally, combined with deep pressure like lying with a leg over her body.

 

Late Nights: Most nights, Emily stayed wired until 2-3 a.m., eventually passing out from exhaustion.

 

 

What We Tried (and What Didn’t Work)

 

We explored countless solutions, but many didn’t work for us:

 

Weighted Blankets: These didn’t suit Emily and couldn’t be left on overnight.

 

Compression Sheets: She hated them—they went straight to the bin.

 

Baths at Different Times: No improvement.

 

Magnesium Creams and Sprays: Tried and failed.

 

 

 

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Discovering Melatonin

 

At nearly 4 years old, Emily was prescribed melatonin by her pediatrician. This was a turning point in our journey, but it wasn’t a magic solution.

 

What to Know About Melatonin in Ireland

 

It’s a prescription medication in Ireland and unlicensed, meaning many GPs won’t prescribe it.

 

Pediatricians can prescribe it, and you may qualify for coverage under:

 

The Long-Term Illness Scheme (mental illness under 16).

 

The Hardship Scheme (with a medical card).

 

 

 

Initially, melatonin helped Emily fall asleep, but after 4 hours, she’d wake up ready to start the day.

 

 

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Fine-Tuning Melatonin

 

After deep diving into forums and Facebook groups, I learned these key insights:

 

1. Less is More: Reducing the dose worked temporarily.

 

 

2. Timing is Key: There’s a small window for melatonin’s effectiveness. If Emily fought the sleepiness, it was game over.

 

 

3. Splitting the Dose: This was our breakthrough. I gave half the dose at bedtime and the other half 30 minutes later. It worked!

 

 

 

Our pediatrician supported this unique approach and later adjusted the dose so we could give her more if she woke during the night.

 

 

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Additional Medications

 

At age 7, when Emily began fighting sleep again, the pediatrician prescribed a second medication. It not only helped with sleep but also calmed her during the day and improved regulation. While it wasn’t a silver bullet, it brought significant improvements.

 

 

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Where We Are Now

 

In January 2024, I attended a workshop with CAMHS and learned how the body naturally produces melatonin through light exposure. Armed with this knowledge, we made further changes:

 

Smart Lighting: We used smart bulbs to dim lights gradually from 8 p.m. to 9 p.m.

 

Natural Sunlight: Emily spent an hour outside daily, and we opened blinds during the day and closed them at 6:30 p.m. to prepare for dimming lights.

 

Routine: Emily received one medication at 8 p.m., melatonin at 9 p.m., and usually fell asleep on the couch by 9:30 p.m.

Drinks : lately the wake ups can be linked to her needing to pee. So we have seen progress with limiting her last drink to 7.30pm and making sure we take a toilet trip before falling asleep if possible 

 

 

Sleep Regressions

 

While we still experience sleep regressions, they’re less frequent and shorter. We’ve gone from being up all night 5 nights a week to occasional late bedtimes. Most nights, Emily sleeps through.

 

 

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Takeaways for Parents

 

Here’s what I’ve learned from our journey:

 

1. Trial and Error: Not everything will work for every child. Experiment safely and find what suits your child.

 

 

2. Professional Guidance: Consult pediatricians or specialists to explore tailored solutions like melatonin or other medications.

 

 

3. Consistency and Routine: Small changes like dimming lights, managing screen time, and setting routines can make a big difference.

 

 

4. You’re Not Alone: If nothing seems to work, remember that many of us are still figuring it out. You’re not alone in this journey.

 

 

 

 

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Have You Faced Sleep Challenges?

 

Share your experiences or tips on our Facebook page. Together, we can support one another and navigate these challenges.