This site is dedicated to providing links to products for sensitive skin and children with special needs, living with a genetic disorder or even having a child with special needs can be stressful at times, especially when trying to find the right product for our childrens skin. Here i give my recommended products i have personaly tested and products that have had great reviews.

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Uniquely Human  

Uniquely Human is a “brilliant” (Steve Silberman, author of NeuroTribes) approach to autism in the modern age that provides “common sense [and] practical advice” (Temple Grandin, author of The Autistic Brain) drawn from Dr. Prizant’s four-decade career. It conveys a deep respect for people with autism and their own unique qualities. Filled with humanity and wisdom, Uniquely Human “should reassure parents and caregivers of kids with autism and any other disability that their kids are not broken, but, indeed, special (Booklist, starred review).

Sunscreen for sensitive skin

Fun time activies for special needs children

Welcome to Ava's Blog.

Ava was born with a rare genetic disorder, Xeroderma pigmentosum (XP).

A condition that prevents her skin healing from sun damage. 

In this blog I share my stories of my daughter and I, and what

it's like living with XP

 

 

                                                                       

Unlike most children, Ava can't spend time in the sun, while she has her days outside, it is still very limited, even with sunscreen. She mainly goes out when going to hospital or when we can afford it, she goes to a shopping mall or indoor kids area where she can interact with other children.  Xeroderma pigmentosum (XP) is a very rare genetic disorder and there is currently no cure, she also has microcephaly (small head size) she has dwarfism and a learning disability. Every day life can be challenging, but we stay motivated and find ways to progress. I just want to share our life stories, so more people are made aware of rare genetic skin disorders and to let you know your not alone.

 

Ava can't be defined by her skin or mental disorder, her personality and heart is more special than words can describe, making her 1 in a million... And i wouldn't want to change her in any way. Even tho Ava has mental delays and is non-verbal Ava is very smart, when she is around other children she always tries to act like a parent and sometimes even shows children how to do things in a safer way.

 

It's also so hard finding the right moisturizing lotions and sunscreens for childrens delicate skins, even the right hair products can be a daunting task to find, especially for curly hair, so many expensive products i have tried but just never seem to work. I will also share any recommendations for what I or others have found useful that actually work. 

 

 

1. Reflections on Ava’s Educational Journey

 
Initially, I envisioned or considered the possibility of taking Ava to a traditional school, where she could learn alongside other children and experience a typical educational environment. However, following her diagnosis, we had to revise our plans, as attending a regular school was no longer a feasible option—primarily because the school facilities are not equipped to accommodate her specific needs, given her rare genetic disorder.  

We made efforts to identify schools that might be able to support Ava’s requirements, but unfortunately, none proved suitable.  

Consequently, if Ava were to attend school, she would be exposed to sunlight for approximately 99% of the time, which is not advisable given her condition.

 

2. Are Our Concerns Unreasonably Negative?

 
While I acknowledge the importance of formal education in shaping a child's future, I believe that Ava’s health and well-being must take precedence. Our primary goal is to prevent further deterioration of her skin and to mitigate her risk of developing skin cancer, as she is at a high risk of this condition.  

We also consider the broader perspective: what is the purpose of her attending school if her lifespan may be limited, or if she must endure significant pain?  

Some may perceive our approach as overly cautious or negative, but the reality is that Ava’s condition is so serious that prolonged sun exposure could result in severe health consequences. In this context, taking preventive measures is not negativity but a necessary fact based on her medical condition.

 

3. Educational Progress

 
Currently, Ava is being homeschooled, and she is making remarkable progress given her unique needs. Her coloring skills are excellent. Although she cannot yet write words independently, she demonstrates proficiency in tracing. She is familiar with a few alphabets and numbers, though she requires additional support to expand her knowledge.  

Since she processes information differently, we tailor our teaching approach to her individual level and pace. We avoid pushing her too hard and instead focus on gradual, consistent progress. I am immensely proud of her achievements and resilience.

 

 

 

 

 

 

Despite the numerous challenges we encounter, our unwavering love and dedication to Ava’s well-being remain at the heart of everything we do. We are committed to providing her with the support, care, and opportunities she needs to thrive. We remain hopeful that, through ongoing medical advancements and personalized education, Ava will continue to grow, find happiness, and live a meaningful life. Our primary goal is to ensure her health and happiness while respecting her unique needs and circumstances.

 

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