Halloween 🎃 👻 has NEVER been Audric’s favorite😞He gets severe anxiety about it every year. He hates anything #scary !!! Dressing up in a costume is just way out of “routine”. I’ve learned through the years to let him wear his costume way before the big day but that doesn’t seem to alleviate his anxiety the day of. The last few years I don’t force it...if he wants to wear his costume it’s completely up to him😉 It always seems that at the very last minute he wants to join his friends so he puts it on...it just has to be his choice. Thank you Grandma @7pluscs for getting him his costume way in advance ❤️#anxiety#halloween#specialneeds#choices#trickortreat#fragilex#fragilexsyndrome#fragilexawareness#teamaudric
Link also in profile. --- Interests --- Joking with his favorite people, recycling, and going to the library to borrow movies. --- Challenges --- Angry or anxious people, loud noises, and people singing “Happy Birthday” to him.
#FriendofFRAXA was so popular we decided to give it an update, so after a short break we're bringing them back. We hope everyone enjoys the updated format as we have expanded them onto our website. The latest #FriendofFRAXA will appear on our homepage.
Would you like to see someone you know featured as a #FriendofFRAXA ? Simply email a photo accompanied with age, location, and a few of his or hers interests and challenges to email@example.com.
We welcome all who have been touched by Fragile X, including friends, grandparents, siblings, professionals and companions alike.
Before fragile X:
Ben was normal.
I didn’t worry about Ben
I didn’t think much about having a third child.
Everything was ok
I didn’t worry about the future
I didn’t worry about Jake
I didn’t feel jealous when people had babies that were “ normal”. I didn’t feel jealous when other people’s kids did stuff Ben couldn’t
I could talk about babies and milestones
After fragile X:
Ben is different
I wonder what’s Ben and what’s fragile x
I worry about possibly everything there is in the future
I want another child and feel like I’ve been robbed of this.
I worry about Jake and having to explain his brother one day.
I worry about who will take care of Ben when I’m gone.
It hurts to see babies bens age doing stuff and acting normal.
Did you know it’s only been 5 months since I found out Bens diagnoses?
Probably about 10 months since I “ new” something was wrong.
9 since I found out my status and new Bens delays were 99 percent because of fragile X.
I’m good most days. But some days I’m not. Some days I’m still processing it all. Some days I’m still wondering if I’m going to wake up from this crazy dream. Some days I want to go back to “ before fragile x”. #fragilex#fragilexsyndrome#benny#before#after
Audric is loving his new ABA therapist Kyra! God is so good and always sends people that Audric needs to go to the next level! She is stern and gentle all at the same time!! And she doesn’t get sucked into his charm 🤣😂🙌 Here she is guiding him on making his “after school smoothie”😋
It’s #fragilexawarenessday today ... if you’re in London near Kings Cross, there’s an awareness stand where you can find out more. Otherwise check out @fragilexuk .
In a nutshell, #fragilexsyndrome is the most common inherited cause of learning disability ... and if you’ve been following me a while you might remember that my #titsoutcollective charity was @fragilexuk as my gorgeous nephew is severely affected.
Give them a follow to show your support too.
It’s European Fragile X Awareness Day! Fragile X is a genetic condition particularly affecting boys but girls can also have symptoms. It is a common cause of learning difficulties and intellectual disability and can also cause premature ovarian failure and ataxia. Women can be unaware they carry Fragile X. Early intervention is important to assist children to achieve their potential. Testing is available for children and as preconception carrier screening. @genesaustralia #genesaustralia#fragilex#fragilexsyndrome#genetics#genes#geneticcounselling#babies#pregnancy#dna
You never truly, fully, understand a thing until it happens to you. #fragilexsyndrome
We’ve now known about #fragilex since January 2016. Since then, we’ve been searching and constantly learning about what this is and means for our little unit. Rohan has and will never change. He’s my wee boy but since that day something changed inside me, for me, for us.
It was a stark realisation that our lives were different from yours. It was a realisation that nothing was going to be easy. It went from a “slight delay” to a “disability”. To a life shattering heartbreak.
No one will know what anyone’s life is actually like. No one will know the tears that are shed in silence, in desperation, in solitude. No one will know the decisions, the effort, the exact nature of Fragile X or those it affects.
It’s not just Rohan who has been affected. He doesn’t understand that he has this difference. He doesn’t know that he’s not learning like others his age. He doesn’t know that it’s not right to behave the way he does. He doesn’t know what the world is really about (maybe that’s a good thing).
But I. I live with life altering news. With stares, unwarranted conclusions and judgment. I live with unknown possibilities and unknown impossibilities. I live with hopelessness.
I wonder not just for Rohan’s future. But for mine. As a #fragilexcarrier I live with my own uncertainties. I live with depression and anxiety. I live with a faulty X gene, making pregnancy or future planning an issue. What if I got pregnant and it was another ‘bad X’ that was passed along? I live with increased likelihood of losing my baby. And I did, earlier this year. It wasn’t just losing the baby through miscarriage that was hard. It was the extra appointments. The extra tests. The anxiety of knowing that if the test came back to show my baby was affected then I couldn’t keep it. The baby made up its own mind before I had to do this which actually was a relief but overall the unknown and the loss is so difficult on my mind and self. I live with possible early menopause. I live with possible tremors. I live with possibilities, negative possibilities.
I’m not someone you want to be with. #fragilexawareness#XX
What a day!! 🙌❤️ It was so amazing to have both Cindi Rogers (mother of two adults sons with Fragile X Syndrome and author of becoming Mrs. Rogers: Learning to live the Fragile X Way) and Dr. Elizabeth Berry-Kravis (she is the professor in the departments of Pediatrics, Neurosurgery and Neurological Sciences at Rush Medical, Chicago since 1992 and established a comprehensive Fragile X Clinic and Research Program there, through which she provides care to more than 600 patients with Fragile X syndrome) present at our local Fragile X Education Event today!!!❤️ Then finished the day with an intimate dinner!! We feel so blessed!! #fragilex#fragilexsyndrome#fragilexawareness#FRAXSOCAL#education#inclusion#knowledgeispower#familysupport#teamaudric
How To Teach Complex Movements For People Living With An Intellectual Disability.
Fragile X Syndrome is categorised as an intellectual disability that presents with behavioural, learning and developmental challenges as well such as co-ordination and gross/fine motor skills.
Visual and verbal cues can be utilised to support gross and fine motor movement, or introduce a completely new movement.
From here visual and verbal cues can be used to develop underlying skills that support gross motor movement such as movement planning, body awareness, attention and alertness.
Due to the short attention span evident in Fragile X Syndrome it is imperative to provide constant visual, physical and verbal cues in order to address all underlying components of a movement, such as the deadlift, for correct and safe execution.
Through visual and verbal cues we have then created the ability for those living with intellectual disabilities the capacity to safely participate and engage in occupations such as exercise which in turn supports mental, health and emotional well-being of those living with intellectual disabilities.