an online Instagram web viewer

#fragilexsyndrome medias

Photos

Tre dagar bortrest. Tre dagar för mycket. En längtan som blev till ett förtvivlat utbrott när hjärnan inte orkade hålla ihop det längre. Jobbigt. Men alltid allra jobbigast för honom. Vi lappar och lagar med kärlek.
Som alltid.❤️ #meltdown #fragiltxsyndrom #fragilexsyndrome #sindromedoxfragile #autism
#funktionsnedsättning  #if #id #funktionsvariation #intesåkonstigt #allaolika #vågafråga #funkisfamilj #educateyourself #specialneeds #humanneeds #heclimbseveresteveryday
Tre dagar bortrest. Tre dagar för mycket. En längtan som blev till ett förtvivlat utbrott när hjärnan inte orkade hålla ihop det längre. Jobbigt. Men alltid allra jobbigast för honom. Vi lappar och lagar med kärlek. Som alltid.❤️ #meltdown  #fragiltxsyndrom  #fragilexsyndrome  #sindromedoxfragile  #autism  #funktionsnedsättning  #if  #id  #funktionsvariation  #intesåkonstigt  #allaolika  #vågafråga  #funkisfamilj  #educateyourself  #specialneeds  #humanneeds  #heclimbseveresteveryday 
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
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 
Jeg elsker en med Fragilt X ❤ #morsdreng #fragilexsyndrome #fragilex
Thank you to everyone that came to the screening of #intelligentlives last night.  What an eye-opening and moving documentary.  It needs to be seen by many more people, and everyone who attended asked us to bring it back for a second showing, so we will be working on that ASAP.  The only error of the entire evening was we forgot to take pictures of the audience or the 3 of us!  Khia & Rosie it was wonderful to collaborate with you both to bring this film to Miami.  Can’t wait to work together again!  #togetherwearestronger #intelligentlivesmiami #intelligentlivesmatter #intelligentlivesdocumentary #miamievents #greatheightsacademy #thexfamilyfoundation #samanthaspurpose #cerebralpalsy #cerebralpalsymom #autism #fragilex #fragilexsyndrome #downsyndrome #downsyndromeawareness #cerebralpalsyawareness #specialneeds #specialneedskids #specialneedseducation #inclusion #inclusionmatters #inclusionteacher #specialneedsmiami #autismmiami #cerebralpalsymiami #fragilexmiami #downssyndromemiami #inclusionmiami
Thank you to everyone that came to the screening of #intelligentlives  last night. What an eye-opening and moving documentary. It needs to be seen by many more people, and everyone who attended asked us to bring it back for a second showing, so we will be working on that ASAP. The only error of the entire evening was we forgot to take pictures of the audience or the 3 of us! Khia & Rosie it was wonderful to collaborate with you both to bring this film to Miami. Can’t wait to work together again! #togetherwearestronger  #intelligentlivesmiami  #intelligentlivesmatter  #intelligentlivesdocumentary  #miamievents  #greatheightsacademy  #thexfamilyfoundation  #samanthaspurpose  #cerebralpalsy  #cerebralpalsymom  #autism  #fragilex  #fragilexsyndrome  #downsyndrome  #downsyndromeawareness  #cerebralpalsyawareness  #specialneeds  #specialneedskids  #specialneedseducation  #inclusion  #inclusionmatters  #inclusionteacher  #specialneedsmiami  #autismmiami  #cerebralpalsymiami  #fragilexmiami  #downssyndromemiami  #inclusionmiami 
As you can see, we had a great turn out with our pot luck. Thanks to all of our staff and clients who prepared a dish 😋🍇🍍🍓🥖🍗🍝🥗🍰🥧 .
.
.
.
.
.
.
#weeatgoodhere #potluck #potluckfood #yum #goodeats #autismspeaks #whatmattersmost #wmm #concord #nc #cabarruscounty #dayprogram #autism #autismawareness #autismspeaks #downsyndrome #downsyndromeawareness #love #fragilexsyndrome #family #autismcommunity #autismworld #supportautism #autismfamily #differentnotless #autismproud #specialneeds
As you can see, we had a great turn out with our pot luck. Thanks to all of our staff and clients who prepared a dish 😋🍇🍍🍓🥖🍗🍝🥗🍰🥧 . . . . . . . #weeatgoodhere  #potluck  #potluckfood  #yum  #goodeats  #autismspeaks  #whatmattersmost  #wmm  #concord  #nc  #cabarruscounty  #dayprogram  #autism  #autismawareness  #autismspeaks  #downsyndrome  #downsyndromeawareness  #love  #fragilexsyndrome  #family  #autismcommunity  #autismworld  #supportautism  #autismfamily  #differentnotless  #autismproud  #specialneeds 
Meet Andy! 
https://www.fraxa.org/meet-andy/
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 brianne@fraxa.org. 
We welcome all who have been touched by Fragile X, including friends, grandparents, siblings, professionals and companions alike. 
#FriendofFRAXA #FragileX #FragileXSyndrome #FragileXAwareness #FXAwareness #FXS #autism #autismawareness #specialneedsparents #diversity #gratitude #nonprofit
Meet Andy! https://www.fraxa.org/meet-andy/ 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 brianne@fraxa.org. We welcome all who have been touched by Fragile X, including friends, grandparents, siblings, professionals and companions alike. #FriendofFRAXA  #FragileX  #FragileXSyndrome  #FragileXAwareness  #FXAwareness  #FXS  #autism  #autismawareness  #specialneedsparents  #diversity  #gratitude  #nonprofit 
....... "This, this is what I am. This is who I am. Come hell or high water. If I deny it. I deny everything I've ever done, everything I ever fought for. " - Green Arrow. #greenarrow #bowandarrow #explore #fightsterotypes #chooseday #fragilexsyndrome #afterschoolmatters
#Repost @samispurpose with @get_repost
・・・
Who is joining us tonight?  Are you a teacher, advocate, parent or friend?  Naomie’s brother, Steven, said the following about his sister, “She’s definitely a smart girl. She’s definitely always willing to learn.  I don’t want to see her just boxed in just because of her disability.” Today we take another step towards raising awareness about inclusion.  It’s time to open doors and break down the boxes!!! #intelligentlivesmiami #intelligentlivesmatter #intelligentlives #intelligentlivesdocumentary #miamievents #samanthaspurpose #voicesforcerebralpalsy #cerebralpalsy #autism #downsyndrome #fragilexsyndrome #inclusion #inclusionmatters #inclusiveeducation
#Repost  @samispurpose with @get_repost ・・・ Who is joining us tonight? Are you a teacher, advocate, parent or friend? Naomie’s brother, Steven, said the following about his sister, “She’s definitely a smart girl. She’s definitely always willing to learn. I don’t want to see her just boxed in just because of her disability.” Today we take another step towards raising awareness about inclusion. It’s time to open doors and break down the boxes!!! #intelligentlivesmiami  #intelligentlivesmatter  #intelligentlives  #intelligentlivesdocumentary  #miamievents  #samanthaspurpose  #voicesforcerebralpalsy  #cerebralpalsy  #autism  #downsyndrome  #fragilexsyndrome  #inclusion  #inclusionmatters  #inclusiveeducation 
Who is joining us tonight?  Are you a teacher, advocate, parent or friend?  Naomie’s brother, Steven, said the following about his sister, “She’s definitely a smart girl. She’s definitely always willing to learn.  I don’t want to see her just boxed in just because of her disability.” Today we take another step towards raising awareness about inclusion.  It’s time to open doors and break down the boxes!!! #intelligentlivesmiami #intelligentlivesmatter #intelligentlives #intelligentlivesdocumentary #miamievents #samanthaspurpose #voicesforcerebralpalsy #cerebralpalsy #autism #downsyndrome #fragilexsyndrome #inclusion #inclusionmatters #inclusiveeducation
Who is joining us tonight? Are you a teacher, advocate, parent or friend? Naomie’s brother, Steven, said the following about his sister, “She’s definitely a smart girl. She’s definitely always willing to learn. I don’t want to see her just boxed in just because of her disability.” Today we take another step towards raising awareness about inclusion. It’s time to open doors and break down the boxes!!! #intelligentlivesmiami  #intelligentlivesmatter  #intelligentlives  #intelligentlivesdocumentary  #miamievents  #samanthaspurpose  #voicesforcerebralpalsy  #cerebralpalsy  #autism  #downsyndrome  #fragilexsyndrome  #inclusion  #inclusionmatters  #inclusiveeducation 
The lovely Tina has been busy making poppies for a display  her daughter's school is doing #yarn #crochet #crochetpoppies #crochetgifts #crochethats #crochetscarfs #fragilexsyndrome #autism
This week as a team we reviewed the Wilbarger Brushing Protocol as part of our own professional development 👋🏼
There are SO many benefits to this therapeutic approach and we love seeing all of the amazing progress that our clients make when this is used as part of their therapy program ✔️
#occupationaltherapy #occupationaltherapist #ot #handwriting #school #schoolwork #brush #finemotor #finemotorskills #grossmotor #grossmotorskills #sensory #sensoryplay #sensoryprocessingdisorder #sensoryoverload #spd #regulation #modulation #fragilex #fragilexsyndrome #autism #autistic #autismawareness #asd #kids #play #gym #sensorygym #kindergarten #fun ✏️W.S.OT
This week as a team we reviewed the Wilbarger Brushing Protocol as part of our own professional development 👋🏼 There are SO many benefits to this therapeutic approach and we love seeing all of the amazing progress that our clients make when this is used as part of their therapy program ✔️ #occupationaltherapy  #occupationaltherapist  #ot  #handwriting  #school  #schoolwork  #brush  #finemotor  #finemotorskills  #grossmotor  #grossmotorskills  #sensory  #sensoryplay  #sensoryprocessingdisorder  #sensoryoverload  #spd  #regulation  #modulation  #fragilex  #fragilexsyndrome  #autism  #autistic  #autismawareness  #asd  #kids  #play  #gym  #sensorygym  #kindergarten  #fun  ✏️W.S.OT
My beautiful Fragile X baby boy( not such a baby)
My beautiful Fragile X baby boy( not such a baby)
#Abraham loves having his dad home ❤️ as long as I’m living, my baby you’ll be. #fragilex #fragilexsyndrome #ilovethisman
In time out 😊 music on salt lamp on perfect 😊#yarn #crochet #crochetgifts #fragilexsyndrome #autism
Did you know we have an Etsy store? If you send a custom order for an awareness ribbon we will donate 10% to a charity of your choice! Check it out! #kidswithabilities #disabilityawareness #autism #fragilexsyndrome #downsyndrome #etsy #inclusion #education #specialneeds #awareness
Cute puppy alert!!! 😍🤗 Posted more pics with a quick update on the blog. (Link in bio.) Feelings of joy and gratitude are overflowing in the Mayes family. 💕www.ichoosegratitude.com
Cute puppy alert!!! 😍🤗 Posted more pics with a quick update on the blog. (Link in bio.) Feelings of joy and gratitude are overflowing in the Mayes family. 💕www.ichoosegratitude.com
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
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 
It’s ON! Let’s get together and #golf for @fish__for__life @surfershealing and  @ocautism  Register for an ocean-view round and after party and a chance to win a brand new Ford Explorer from Tuttle-Click Ford Lincoln. Your participation is greatly appreciated, tax deductible and will put BIG smiles on the faces of children and adults with special needs. Say you’ll come PARTY! We have a special reduced price for our after party only and you can check out at kahunacaresfoundation.org
Let’s DO THIS! 🙏👏🤙🏾🙌
•
•
•
•
#doinggood #charitygolftournament #charitygolftourney #fivestarresort #pelicanhill #newportbeach #visitpelicanhill #newportcoast #bestgolfviews #relaxation #treatyourself #falltravel #weekendgetaway #fridayvibes #golflinks #golfing #orangecountygolf #takefridayoff #autism #downsyndrome #fragilexsyndrome #givingback #lagunabeach #nonprofit #specialneedsmom #specialneedsdad
It’s ON! Let’s get together and #golf  for @fish__for__life @surfershealing and @ocautism Register for an ocean-view round and after party and a chance to win a brand new Ford Explorer from Tuttle-Click Ford Lincoln. Your participation is greatly appreciated, tax deductible and will put BIG smiles on the faces of children and adults with special needs. Say you’ll come PARTY! We have a special reduced price for our after party only and you can check out at kahunacaresfoundation.org Let’s DO THIS! 🙏👏🤙🏾🙌 • • • • #doinggood  #charitygolftournament  #charitygolftourney  #fivestarresort  #pelicanhill  #newportbeach  #visitpelicanhill  #newportcoast  #bestgolfviews  #relaxation  #treatyourself  #falltravel  #weekendgetaway  #fridayvibes  #golflinks  #golfing  #orangecountygolf  #takefridayoff  #autism  #downsyndrome  #fragilexsyndrome  #givingback  #lagunabeach  #nonprofit  #specialneedsmom  #specialneedsdad 
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”😋
#abatherapy #fragilex #fragilexsyndrome #fragilexawareness #teamaudric
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”😋 #abatherapy  #fragilex  #fragilexsyndrome  #fragilexawareness  #teamaudric 
Flashing back to when we introduced you to the PINCER GRIP 👌🏻
This grip gives a child greater control when holding small items or self feeding 🍪 and is an important developmental milestone to help grasp and manipulate objects 🎲, develop a proper pencil grip for writing ✏️ , and help with buttoning 👕 and zipping 👖among lots of other things! 
#occupationaltherapy #occupationaltherapist #ot #handwriting #school #schoolwork #pencil #finemotor #finemotorskills #grossmotor #grossmotorskills #sensory #sensoryplay #sensoryprocessingdisorder #sensoryoverload #spd #regulation #modulation #fragilex #fragilexsyndrome #autism #autistic #autismawareness #asd #kids #play #gym #sensorygym #kindergarten #fun ✏️W.S.OT
Flashing back to when we introduced you to the PINCER GRIP 👌🏻 This grip gives a child greater control when holding small items or self feeding 🍪 and is an important developmental milestone to help grasp and manipulate objects 🎲, develop a proper pencil grip for writing ✏️ , and help with buttoning 👕 and zipping 👖among lots of other things! #occupationaltherapy  #occupationaltherapist  #ot  #handwriting  #school  #schoolwork  #pencil  #finemotor  #finemotorskills  #grossmotor  #grossmotorskills  #sensory  #sensoryplay  #sensoryprocessingdisorder  #sensoryoverload  #spd  #regulation  #modulation  #fragilex  #fragilexsyndrome  #autism  #autistic  #autismawareness  #asd  #kids  #play  #gym  #sensorygym  #kindergarten  #fun  ✏️W.S.OT
Ricaurte in Colombia has the largest-known cluster of people with fragile X syndrome, the leading cause of inherited intellectual disability. 
Scientists are working to understand the syndrome and its link to #autism — about 1/3 of people with fragile X also have autism. The town offers a unique opportunity for study, but the scientists there are also trying to help. Isolated by geography and trapped by economic hardship, Ricaurte’s residents are in need of more than an understanding of fragile X.

Read the full story at the link in the bio. 
Photography by @juancristobalcobo 
#autism #autismawareness #fragilex #fragilexsyndrome #fragilexawareness #colombia #ricaurte #science #scientific #sciencenews #neuroscience #neurology #genes #gene #genetics #research #health #intellectualdisability #disability #discovery #photography #portraitphotography
Ricaurte in Colombia has the largest-known cluster of people with fragile X syndrome, the leading cause of inherited intellectual disability. Scientists are working to understand the syndrome and its link to #autism  — about 1/3 of people with fragile X also have autism. The town offers a unique opportunity for study, but the scientists there are also trying to help. Isolated by geography and trapped by economic hardship, Ricaurte’s residents are in need of more than an understanding of fragile X. Read the full story at the link in the bio. Photography by @juancristobalcobo #autism  #autismawareness  #fragilex  #fragilexsyndrome  #fragilexawareness  #colombia  #ricaurte  #science  #scientific  #sciencenews  #neuroscience  #neurology  #genes  #gene  #genetics  #research  #health  #intellectualdisability  #disability  #discovery  #photography  #portraitphotography 
Fragile X Syndrome :  X linked dominant disorder due to increase CGG trinucleotide repeats . Avg IQ - 40

#medrevisionataglance#neetpg#usmle#aiimspg#fragilexsyndrome#genetics#pathology#pediatrics
It’s #fragilexawareness day today - XX18! The most common inherited cause of learning disability, fragile x affects as many as 1 in 148 people, and can cause fertility issues and ataxia, as well as autism-like characteristics #fragilexsyndrome #fragilextraordinary  #fragilex #celebratediversity
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.
.
#thankyou #fragilex
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. . #thankyou  #fragilex 
If only i could read your mind... #littlebrother #ohana #wouldntchangehimfortheworld #makesmesmile  #lovehimsomuch #fragilexawareness #fragilexsyndrome @fragilexsyndrome.awareness @fragilexuk
We are blessed with incredible supporters. Not only is Sally volunteering at Kings Cross with us today on her birthday, to raise funds and awareness, she is doing a fundraiser on Facebook for us as birthday gifts and brought US beautiful @beascakesandpastries cupcakes 😍🍰🎂🎁 #amazingpeople #volunteering #kingsX #nationalrail #kingscross #volunteer #fragilexsyndrome #fragilexawareness #fragilexawarenessday
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
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 
The prevalence of Fragile X premutation is 1/250 - 1/400 in the Middle East & the eastern Mediterranean region.
#fragilexawarenessday 
#fragilex 
#fragilexsyndrome 
#fragilexsyndromeawareness 
#fragilexcarrier 
#fragilexpremutation
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
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 
It's Fragile X Awareness Day! We are celebrating with our friends across Europe and the world. Tag us in your awareness posts today! Also, keep an eye on our feed for some exciting updates! #fragilexawareness #fragilexsyndrome #fragilextraordinary #fragileXpedition #fragilex #fragilexawarenessday #learningdisabilities #learningdisability #intellectualdisability #autism
Today is Fragilt X awarness day. 
#fragilexsyndrome #fragilex #awarness
#thankyou Tuttle click #ford #Irvine for supporting the 1st annual @kahunacaresfoundation #golf tournament we Appreciate your #company always supporting the special-needs community.When you sign up for the Golf tournament you have a chance to win a brand new #ford #explore in a #holeinone contest. Thank you again for #supporting the #specialneedscommunity all money raised will be going to three wonderful #nonprofits that truly give back to the kids. it’s not to late to donate for the #silentauction also afternoons party with food and drinks from #pelicanhillresort with live #music from #orangecounty own @common_sense_oc  #ocautism #surfershealing #fishforlife #autism #downsyndrome #fragilexsyndrome #newportbeach #lagunabeach #sanclemente #golf #golfswing #funwithfriends #dad #kahuna #surfing #dadswhogolf #danapoint
#thankyou  Tuttle click #ford  #Irvine  for supporting the 1st annual @kahunacaresfoundation #golf  tournament we Appreciate your #company  always supporting the special-needs community.When you sign up for the Golf tournament you have a chance to win a brand new #ford  #explore  in a #holeinone  contest. Thank you again for #supporting  the #specialneedscommunity  all money raised will be going to three wonderful #nonprofits  that truly give back to the kids. it’s not to late to donate for the #silentauction  also afternoons party with food and drinks from #pelicanhillresort  with live #music  from #orangecounty  own @common_sense_oc #ocautism  #surfershealing  #fishforlife  #autism  #downsyndrome  #fragilexsyndrome  #newportbeach  #lagunabeach  #sanclemente  #golf  #golfswing  #funwithfriends  #dad  #kahuna  #surfing  #dadswhogolf  #danapoint 
Today is Fragile X Syndrome awareness day. I truly believe that increased awareness and understanding of Fragile X is the one thing that can have the biggest positive impact on the lives of children like Harrison. So please do me a favour and give @fragilexuk a follow and spend 5 minutes today reading about Fragile X. Next time you meet someone with ANY learning disability take time to talk to them, listen to them, laugh with them, learn from them and be inspired by them. #fragilexsyndrome #fragilexawarenessday #fragilexawareness #fragilextraordinary #charity #lovemyboy #4charity #causes #change #understanding #learningdisabilities #autism
Today is Fragile X Syndrome awareness day. I truly believe that increased awareness and understanding of Fragile X is the one thing that can have the biggest positive impact on the lives of children like Harrison. So please do me a favour and give @fragilexuk a follow and spend 5 minutes today reading about Fragile X. Next time you meet someone with ANY learning disability take time to talk to them, listen to them, laugh with them, learn from them and be inspired by them. #fragilexsyndrome  #fragilexawarenessday  #fragilexawareness  #fragilextraordinary  #charity  #lovemyboy  #4charity  #causes  #change  #understanding  #learningdisabilities  #autism 
I feel incredibly privileged to have the opportunity to work with this little puppy... if all goes well Shiloh is on her way to being an excellent service dog. She has such a sweet gentle temperament and her family is already seeing positive results in there young son. This little man is his brother and is such a big help! #servicedog #servicedogtraining #servicedogsoginstagram #doglover #dogtrainer #dogtraining #dogmom #doglife #puppylove #puppy #puppies #puppiesofinstagram #instadog #dogstagram #labradoodle #dogtrainersofinstagram #perfectpup #perfectpups #perfectpupstraining #theperfectpup #gooddog #fragilexsyndrome
I feel incredibly privileged to have the opportunity to work with this little puppy... if all goes well Shiloh is on her way to being an excellent service dog. She has such a sweet gentle temperament and her family is already seeing positive results in there young son. This little man is his brother and is such a big help! #servicedog  #servicedogtraining  #servicedogsoginstagram  #doglover  #dogtrainer  #dogtraining  #dogmom  #doglife  #puppylove  #puppy  #puppies  #puppiesofinstagram  #instadog  #dogstagram  #labradoodle  #dogtrainersofinstagram  #perfectpup  #perfectpups  #perfectpupstraining  #theperfectpup  #gooddog  #fragilexsyndrome 
What a touching documentary! A must watch! A young boy chooses his brother with Fragile X Syndrome as his Hero for his school documentary project! Great job!❤️ Link in description to watch!  #fragilexsyndrome #advocacy #nfxf #fragilexawareness #nfxfwastatechapter #fx #community #inspiring #fragilexstrong #fragilexawareness #nationaldisabilityawarenessmonth
If you want to know how to treat a child with special needs. Look at their siblings they will show you! Amaya teaching her brother how to play with kinetic sand.. #bigsisterduties #fragilexsyndrome #intellectualdisabilities #ourfragilexlife #ourfragilexjourney #minitherapists #autism #autismsister
Such a beautiful October🎃 day, perfect for bubble blowing, rescuing roly polys 😆,puddle jumping and tea parties. I love watching these two.♥️ Even though I may not be able to run around and play with them right now, just hearing their laughter, seeing those smiles and getting tons of hugs and kisses, makes my heart beyond happy!😍 Love my sweet Emi and precious RyRy!♥️♥️ #myemi #perfectday #lovethesetwo #happiness #family #outdoorfun #autism #autismspeaks #fragilex #fragilexsyndrome #blessed #godisgood #couldntaskformore
Such a beautiful October🎃 day, perfect for bubble blowing, rescuing roly polys 😆,puddle jumping and tea parties. I love watching these two.♥️ Even though I may not be able to run around and play with them right now, just hearing their laughter, seeing those smiles and getting tons of hugs and kisses, makes my heart beyond happy!😍 Love my sweet Emi and precious RyRy!♥️♥️ #myemi  #perfectday  #lovethesetwo  #happiness  #family  #outdoorfun  #autism  #autismspeaks  #fragilex  #fragilexsyndrome  #blessed  #godisgood  #couldntaskformore 
Right now in our home...
Right now in our home...
Meeting Shiloh. Already so much love. 💗
Meeting Shiloh. Already so much love. 💗
Welcome to the family, Shiloh!
Welcome to the family, Shiloh!
If you're looking for a Free Sales or Rental Valuation please call us on 01623 753123.
Lighthouse Estate Agents & Lettings
Your Established Family Run and Owned Agent.
#lighthouse #lighthouseestateagents #forsale #forrent #letby #sold #property #ashfield #estateagentskirkbyinashfield #england #fragilex #fragilexsyndrome #fragilexawareness #autism #home #chasinglight #nottingham #nottinghamshire #autismawareness #thumbsup #happy #iphoneonly
If you're looking for a Free Sales or Rental Valuation please call us on 01623 753123.
Lighthouse Estate Agents & Lettings
Your Established Family Run and Owned Agent.
#lighthouse #lighthouseestateagents #forsale #forrent #letby #sold #property #ashfield #estateagentskirkbyinashfield #england #fragilex #fragilexsyndrome #fragilexawareness #autism #home #chasinglight #nottingham #nottinghamshire #autismawareness #thumbsup #happy #iphoneonly
If you're looking for a Free Sales or Rental Valuation please call us on 01623 753123.
Lighthouse Estate Agents & Lettings
Your Established Family Run and Owned Agent.
#lighthouse #lighthouseestateagents #forsale #forrent #letby #sold #property #ashfield #estateagentskirkbyinashfield #england #fragilex #fragilexsyndrome #fragilexawareness #autism #home #chasinglight #nottingham #nottinghamshire #autismawareness #thumbsup #happy #iphoneonly
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
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 
October is #nationaldisabilityawarenessmonth which is a great opportunity to spread awareness of #fragilexsyndrome 👊🏻❤️ Check out the link in description to learn more about National Disability Awareness Month! #fragilex #fragilexawareness #fxstrong #nfxf #nfxfwastatechapter #caregiver #advocacy #support #community #awareness #intellectualdisability #genetic
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.
.
🙌💪
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. . 🙌💪
My amazing self advocate in the making!! #fragilex #fragilexsyndrome #fragilexawareness #teamaudric
Getting ready to start our 2018 Fragile ❌ Education Conference!! #fragilexsyndrome #fragilexawareness #fraxsocal