• Care4ASH1L

Valiant Verity - USA

Updated: Apr 22


Verity is our rainbow baby and when she was born on New Year’s Eve in 2008, she made our family of five complete. Besides being a little scrawny due to gastric reflux until she was about nine months old, she was an easy and happy baby. As she began interacting, we did notice a few concerning behaviors: she was painfully shy with anyone who was not family, she liked to bounce and flap her arms and twirl two like objects in each hand, and she was reluctant to try to talk or walk when anyone was watching. Other than that, she was a normal toddler who was very content and loving.


We first had her screened for autism when she was about two years old. They had to test her twice, because the first time a male completed the screening, and she would not interact with him; the second time with a female, she did fine and they told us she did not have autism. We knew that she was struggling with social interaction, though, and was not making normal eye contact nor engaging in typical conversation with other children. We had her tested again two years later when we enrolled her in the early learning preschool for our school district, but they once again told us she did not have autism, so we paid for her to attend as a mentor, since she did not qualify for free services at that time without a disability diagnosis. Finally, when she was in second grade and had a wonderful advocate for a teacher who strongly encouraged us to have her tested a third time (in part, to get a diagnosis before high-stakes third-grade testing began), we had her screened once more and this time they said she did have ASD. We then agreed to genetic testing, and that’s when we learned of her ASH1L de novo mutation (no one else in the family is afflicted).


We are so thankful that Verity is very high functioning and does not have any of the health issues that other ASH1L sufferers have. She does take a daily regimen of a laxative; she struggles with normal eye contact/initiating typical conversations and she has a very small circle of intimate friends & enjoys time alone; she will still occasionally awkwardly twitch if she is really excited about something, but mostly controls this in public; certain types of loud noises do still bother her, such as motors or babies crying, but she is able to manage her discomfort and it doesn’t prevent her from engaging in any activities; she struggles with traditional school work, especially math, and does not test well at all. She can read very fluently but does not synthesize complex/multiple texts well. She much preferred learning remotely during the pandemic, but we put her back in in-person learning this year (we are both public school educators) in hopes of helping her improve her social skills, but traditional school is exhausting for her and she does not like it (she is on an IEP). It is frustrating that Verity falls into somewhat of a grey area on the spectrum where there is not much out there for her in the way of appropriate treatment and services. Thus far, we have mainly enrolled her in programs for typically-functioning children with the exception of a few technology camps that were specifically for kids with autism. We are very appreciative to be a part of this group and learn from others, as well as advocate for more understanding and services for our special needs children.


So, let me tell you what is wonderful about Verity Liana: she is such a sweet, sensitive soul! She adores her family & friends and has a caring heart that is full of empathy for others. She loves music, plays piano and drums, sings in the school choir (her favorite subject in school), and attends Broadway musicals. She is passionate about animals, especially dogs and tropical birds. She has a wonderful sense of humor. Like so many other kids, she loves electronics and spends far too much time on her iPad and Nintendo Switch. She enjoys traveling to new places and Disney World is her absolute favorite destination in the whole world, where she comes alive immersed in all the sights & sounds: she embraces the thrill rides, the shows & parades, character meets, fireworks, & dining experiences. She is currently a Star Wars nerd and has her first crush on Kylo Ren, so she is trying to talk us into taking her on the new Galactic Starcruiser. She truly brings joy to our lives every day and we cannot imagine our lives without her. She has taught us much about what is most important in this life!