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. 

 

My experience with parenting so far has been positive, but I acknowledge that it is not without it's challenges. Parenthood involves many ups and downs, including frequent tantrums and concerns about children’s safety. I believe these realities are often underrepresented in societal discussions. While many people tend to glamourize having children, there is a need for more honest conversations about what truly being a parent entails. Such discussions could be more beneficial for future generations.

One important aspect that is often overlooked is that choosing to become a parent requires significant sacrifices. Parenthood is not solely about personal fulfillment; it is about prioritizing the well-being of one’s children above all else. There will be days when one might not feel emotionally or physically at their best, yet the responsibility of parenting persists, sometimes leading to additional stress and chaos.

 

 

Additionally, childbirth can bring about profound changes in women, including chemical imbalances in the brain. Some women experience postpartum depression (PPD), and in many cases, they may not even realize they are suffering from depression. Therefore, it is crucial to be mentally and financially prepared for parenthood, ensuring one’s well-being is adequately managed.

Some individuals may argue that raising a child with a rare genetic disorder or special needs presents unique challenges. While this is true, it is important to recognize that parenting in general involves its own set of difficulties, regardless of whether a child is considered "normal" or has specific needs. These challenges may vary in nature but are an inherent part of the parenting experience.

 

 

For example, when my daughter Ava was three years old and I was pregnant with my second child, a nurse told me I needed to undergo a scan. When I inquired about the reason, she mentioned that my firstborn had a disability. I remember feeling deeply offended by her remark. I responded that my child is simply “special.” Looking back, I realize that response might have been somewhat naive. Nonetheless, my perspective remains that I do not define her solely by her needs. I see her as a whole person, and I believe that the parenting experience is fundamentally similar for all parents—though it may be experienced differently depending on individual circumstances.

 

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