COVID-19 Check-In: Month 5 | NFXF (original) (raw)
-
- Fragile X 101
* Fragile X 101
* Prevalence
* Signs and Symptoms
* Genetics and Inheritance
* Testing and Diagnosis - Fragile X Syndrome
* Fragile X Syndrome
* Newly Diagnosed
* Fragile X & Autism - Associated Conditions
* Premutation
* FXPOI
* FXTAS
* New Developments - Xtraordinary Individuals
- 31 Shareable Fragile X Facts
- Fragile X Info SeriesFact sheets by topic
- Fragile X MasterClass™️
- Knowledge CenterFrequently asked questions.
- Fragile X 101
-
- Resources for Families
- FXS Strategies by Topic
* Adulthood
* Autism
* Behavior
* COVID-19
* Daily Living
* Females
* Medications
* Physical & Medical Concerns
* Puberty & Sexuality
* School & Education - FXS Resources by Age
- Premutation Topics
* The Fragile X Premutation
* FXTAS Resources
* FXPOI Resources
* Reproductive Resources - Newly Diagnosed
- ResearchLearn and participate
* Research 101What is research?
* STX209 Reconsent ProjectEnrollment is open
* International Fragile X Premutation Registry — For ParticipantsEnroll now
* Participate in ResearchMyFXResearch Portal
* Original Research Articles
* FORWARD-MARCHDatabase and registry
* Research ResultsNew and archives - Find a Fragile X Clinic
* U.S. Fragile X Syndrome Clinics
* FXTAS-Specific Clinics
* International Clinics & Organizations - Find a Contact Near You
- Knowledge CenterOur Fragile X library
- Webinars & Videos
- Printable Resources
- Treatment Recommendations
-
- Resources for Professionals
- NFXF MasterClass™️ for Professionals
- Research Readiness ProgramResearch facilitation for researchers
- NFXF Data Repository
- International Fragile X Premutation Registry — Research Requests
- FORWARD-MARCHRegistry & Database
- NFXF-Led PFDD Meeting for Fragile X SyndromePatient-focused drug development
- Marketing Your Research Opportunities
- Treatment Recommendations
- Fragile X Clinics
* U.S. FXS Clinics
* FXTAS-Specific Clinics
* International Clinics & Organizations - NFXF RESEARCH AWARDS
* Randi J. Hagerman Summer Scholar Research Awards
* Junior Investigator Awards
Get
Involved-
- Fragile X 101
* Fragile X 101
* Prevalence
* Signs & Symptoms
* Genetics and Inheritance
* Testing and Diagnosis - Fragile X Syndrome
* Fragile X Syndrome
* Fragile X & Autism - Associated Conditions
* Premutation
* FXPOI
* FXTAS
* New Developments - Xtraordinary Individuals
- 31 Shareable Fragile X Facts
- Fragile X Info Series
- FRAGILE X MASTERCLASS
- Knowledge Center
- Fragile X 101
-
- Resources for Families
- FXS Strategies by Topic
* Adulthood
* Autism
* Behavior
* Daily Living
* Females
* Medications
* Physical & Medical Concerns
* Fragile X and Puberty & Sexuality
* School & Education - FXS Resources by Age
- Premutation Topics
* The Fragile X Premutation
* FXTAS Resources
* FXPOI Resources
* Reproductive Resources - Newly Diagnosed
- Research
* Research 101: What is Research?
* STX209 Reconsent Project
* International Fragile X Premutation Registry — For Participants
* Participate in Research
* Original Research Articles
* FORWARD-MARCH
* Research Results Roundup - Find a Clinic Near You
- Find a Contact Near Your
- Knowledge Center
- Webinars & Videos
- Printable Resources
- Treatment Recommendations
-
- Resources for Professionals
- NFXF MasterClass™️ for Professionals
- Research Readiness Program
- NFXF Data Repository
- International Fragile X Premutation Registry — Research Requests
- FORWARD-MARCH Registry & Database
- NFXF-Led Patient-Focused Drug Development Meeting
- Marketing Your Research Opportunities
- Treatment Recommendations
- Find a Clinic Near You
- NFXF Research Awards
* Randi J. Hagerman Summer Scholars
* Junior Investigator Awards
COVID-19 Check-In: Month 5
By Jayne Dixon Weber
“Ian, what day is it? Tuesday or Wednesday?”
“It’s Wednesday mom, you have your call with Dan today.”
“Oh, that’s right. Thanks for reminding me. Thanks for keeping track of what I have each day.”
What else do I have today? I don’t know, I can’t remember, I have to look at my calendar, as the days all run together. I know it’s August, but where did the last four months go? Since the boys — my husband and my son Ian — are both home all day, I find myself getting up earlier and earlier in the morning just to have a few minutes of peace and quiet to myself. The only thing different I’ve noticed is that the sun comes up later now than it did a month ago.
I thought I would take this time to reflect and see the pandemic from Ian’s eyes. He is and has been home, and he mostly likes that, but . . .
His mother (yes, me) pulled him out of work. He works at a grocery store and four months ago we had no idea what we were dealing with. Now we do and I’m glad we did take him out of work. But then the cancellations started:
End-of-season basketball banquet
Spring soccer and track activities
His birthday party and ride-along at the fire station
The Fourth of July neighborhood festivities that have been a part of our life for the last 25 years
Everything in Ian’s life has been cancelled. Everything. It is not just one event and they are not minor events in his life. They mean everything to him. Canceled. And there’s nothing to look forward to. NOTHING.
So, What Have We Been Doing?
Each day we set the daily schedule for Ian, trying to infuse “something” fun or interesting or different to do. And four months into this COVID-19, it becomes harder and harder.
We’ve started alternating our errands between Target, Home Depot, and the grocery store. Every now and then, to shake things up a bit, we throw in a trip to Costco. We go first thing in the morning, wear a mask, stay away from people, and get in and out as fast as we can. Almost clandestine in nature. And this is only possible because Ian has gotten used to wearing a mask. Thank goodness, as masks may be a part of our lives for a long time.
The rest of the day? Ian spends his days on the front porch swing, waiting for the UPS guy, the FedEx guy, and the mail carrier to drive by. He leaves a soda on the driveway for the drivers. This is what he looks forward to, most every day. The bonus is when I order an item (or five) to be delivered, I get an email that gives me a three-hour window when the item will be delivered. Guess who’s out there for three hours waiting? With his soda sitting on the driveway.
In the evening — if you haven’t heard, the people in south Boulder howl every night at 8 PM in honor of the first responders. It’s become part of our nightly routine; I don’t know if it’s good or bad that we can now tell which neighbor is howling, based on their howl. Ian has never howled, but he does like to listen to it.
We started a biweekly social distancing dinner with three other neighbors – yes, we stay more than six feet apart so we can eat without masks! Last week we played badminton in the street. We have thrown out the rules for not playing in the street, though we did put up orange cones to block off the street. (When’s the last time you played badminton?)
Ian’s letting his sister cut his hair. Thank goodness. 😉
I need to come up with new ideas for Ian, and guess what? I need them too.
We’re in uncharted water here. What can we do to take care of ourselves, and what can we do to help others? It’s that combination that — I think — will help us get through this time.
A Quick Survey
We’ve put together a short survey about what’s working for you, what you could use right now, and what you think you might need over the next few months.
While we’d like to be able to offer you free childcare or guarantee a safe return to school, we can do the next best thing — provide ideas and create resources based on your feedback.
NOTE: The survey asks: Which of the following have been helpful to you? To re-familiarize yourself with the articles/webinars listed, we’ve added them here below.
I’ve had many things canceled too, but I can (kind of) see the big picture, I can be hopeful that this too shall pass — though I’m beginning to look forward to the mail carrier every day too. Send a letter to someone you love; it could make their day.
Stay well.
—Jayne jayne@fragilex.org
about
MORE COVID-19 RESOURCES
Jayne Dixon Weber2021-09-30T11:23:43-04:00
Let the Awareness Continue!
It looks like in many places we're back to wearing masks, or will be soon. Our family has pulled out all our favorite masks and getting used to them all over again.