7d • General discussion
So Sorry!!!
Hello everyone, and firstly, thank you to every one of you who has joined this community. ❤️
I owe you an apology for being so quiet. I haven't posted here since July. Summer with the boys, a house renovation and some big decisions about the direction of the business took over, and I should have kept you updated. I'm sorry.
But I wanted to come back and explain why this community means so much to me, because it's about something very personal.
When our boys were first diagnosed with autism, we thought that diagnosis would open the door to more support and guidance. We expected someone would help us understand their needs and show us where to turn next. In reality, we were given the diagnosis and, in many ways, left to navigate the next steps ourselves.
Sleep was a huge challenge. We were referred to a sleep clinic, which unfortunately wasn't specifically geared towards children with autism. While the advice may have been useful for some families, much of it didn't really address the challenges we were experiencing with the boys.
Then came PANDAS, and things became even more difficult.
During some of their worst flares, their anxiety was so severe that even getting them out of the car was a struggle. I remember being unable to leave them in the car with my husband while I quickly popped into a supermarket because they would become so distressed. Nursery became impossible. Their eating was incredibly restricted, and there were days when simply getting through the day felt like an achievement.
We had to seek a private diagnosis for PANDAS, and even getting the medical support we needed afterwards involved letters from consultants and a lot of persistence.
I remember feeling completely lost. I wish I could tell you that I knew where to turn, who to ask or what to do next, but I didn't.
That's a big part of why I created this community.
Over the years, I've learned so much, not only through our own experiences as a family, but also through my degree in Nutritional Therapy and the extensive research I've undertaken along the way.
We've come a long way. The boys went from being unable to attend nursery to accessing 30 hours a week, and they now attend full-time at a specialist forest school. Finding the right environment has made such a difference.
Sleep has improved enormously, too. At eight years old, it's still sometimes hit and miss, and we're certainly not claiming to have everything figured out. But through plenty of trial and error, we've found approaches that work better for our family, including increasing protein, being more mindful of sugar intake and supporting their nervous systems through appropriate routines and regulation strategies.
Their eating is still something we work on, and we haven't magically overcome every challenge, but I've found practical ways to improve their diets and get good sources of protein into them, even with restricted food preferences.
It has taken time, patience, persistence and plenty of trial and error. I'm certainly not suggesting it's been easy, but I do want other parents to know that progress is possible. When I look back at where we started, when I was barely surviving some days, and compare it with where we are now, I'm incredibly grateful for how far we've come. I often think of children as flowers. They all have different needs, and when we give them the right environment, the right nourishment and the support they need to grow, they have the opportunity to thrive. I feel that the boys are now thriving, and I would love to help other families find ways to support their own children, too.
My intention here is genuinely to serve this community.
I don't want this to be another place where parents are bombarded with information, unrealistic promises or endless products to buy. I want it to be a place where you can ask questions, learn, share experiences and access practical, research-informed information that helps you feel a little less alone and a little more empowered.
I appreciate that most parents simply don't have the time to spend hours researching nutrition, gut health, sleep, nervous system regulation and all the other things that can affect our children's wellbeing. And even when you do find information, knowing what to trust is another challenge entirely. I'd love to help make that journey a little easier.
Over the coming weeks, I'd really like to understand what would be most valuable to you.
I'd love you to comment below and tell me:
- What are you struggling with most at the moment?
- What would you really like to understand better?
- Is there a question you've been searching for answers to but still haven't found a satisfactory explanation for?
Some of the areas I'd love to explore more include:
- Gut health, digestion and intestinal health.
- Sleep, anxiety and nervous system regulation.
- Nutrition for children with restricted or fussy diets, including practical ways to increase protein and nutrient intake.
- Understanding nutritional deficiencies and the role of key nutrients in health.
- Functional testing: what different tests can tell us, their limitations and when they may be useful.
- Supporting ourselves as parents and carers, because looking after everyone else can take its toll.
Your answers will also help me shape a longer educational course I'm developing, so please don't be afraid to be specific.
Most importantly, thank you for being here. Whether you've been following this community for months or have only just joined, I hope we can build something genuinely helpful together.
I know what it feels like to wish someone had been there to help you navigate this journey. I'd love this community to become that kind of place for others.
Tracey x
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So Sorry!!!
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