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Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England

Charity Registration SC047332 - The Fragile X Society Registered Charity in Scotland
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA

 

Ask Jil: Your Fragile X Questions

Jil Frey, MSW, LCSW is an American clinical social worker working with individuals of all ages with a variety of social, emotional, and behavioural challenges. Jil has kindly volunteered to discuss your questions and scenarios, particularly those from, or relating to, girls and women with Fragile X. If you would like to ask Jil a question, please contact us, including 'Ask Jil' in the subject. 

Jil is based in New York. She is the owner of Ladderbox, LLC, an eclectic organization providing consultation, direct service, and professional development nationally and internationally namely regarding her approach to social skills education, The Our Best Case Scenario Program (www.theobcsprogram.org) which was designed and leveled for individuals with intellectual disabilities, Fragile X Syndrome, and the talented and gifted population. Jil is currently working on completing the first edition of her comic book series Kinney & Dimitri, a young-adult fiction series connecting with The Our Best Case Scenario approach. 

October 24, 2018

Hi Girls,

The first step is to figure out the usual costs of the things that you like the most (searching the internet works well). The next step is to figure out how often you run out of those things, or how often you would like to buy them. Then, you need to figure out how much money you usually get paid and when, and how often you get paid more money. After that, you need to figure out what money you already need to spend on...

October 24, 2018

Hi Girls,

How do you feel about this? Are you worried about the websites you visit or who you are talking to? It’s important to know what to look out for. Keep in mind: no stranger you are talking to online has a good reason to expect you to send them anything besides words or emojis that you are writing to them (not money, not gifts, not pictures). Also, when you are writing words or emojis, none of what you write should give...

October 24, 2018

Hi Girls and Mums,

Girls, part of being a Mum is feeling really worried that your children are not safe, but also, feeling really worried that your children are not happy. Part of the stress you may feel when you’re around Mum is how much she wants you to be happy but she isn’t sure how to help you have the things you want.

Mums, our girls want to explore the world, and because of the threats they don’t know about, they don’t al...

October 24, 2018

Hi Girls,

Letting people know that this is hard for you is a great idea, just so they are not surprised that you’re not feeling to great after a change that they might not have noticed or been bothered by themselves.

That said, the best thing to do to prepare for these situations is to find some items (the smaller the better) that make you feel safe that you can have with you in your purse or backpack at all times. These objects...

October 24, 2018

Hi Girls,

Here’s a quick way to remember priorities:

  • The first priorities are always the things that PROTECT you (your body, your feelings, your mind). That means things like hygiene, feeling calm and ready, and understanding what you’re doing are the first priorities.

  • If you are protected, the next priorities are things that have DEADLINES. The second things you choose to do should be the things that need to be done by...

October 24, 2018

Hi Girls,

Something I’ve noticed is that sometimes when we humans feel like something is “work”, or even call it “work”, we automatically think it’s something that is going to take a lot of energy, be boring, and be a challenge to get through, so of course we get distracted.

Therefore, the first step is to try not to think of organising as “work”. Organising can be super fun, and there are lots of really cute ways to do it (do a...

October 24, 2018

Hi Mums,

This is not uncommon, and can be frustrating, confusing, and worrisome, but it’s okay! You’re not alone in this concern, and your daughter is not alone in this tendency.

The first thing to remember is that our girls are exceptionally perceptive of emotion. That means that when things are said, or events unfold, our girls are naturally most in tune to how everyone in the situation is feeling, versus what they are saying...

October 24, 2018

Hi Mums,

There is a lot of information circling around in discussions about parenting that warn of the downsides of technology, but sometimes we forget about the upside! Getting some social conversation going through the use of technology can take off the pressure of our girls going to an unfamiliar place to meet people, or having to think on their feet in the moment in an in-person conversation. Anonymous “chat rooms” or conve...

October 24, 2018

Hi Girls,

That’s definitely going to happen sometimes, seeing that your brain is trying really hard to make sense of a busy, confusing world all the time.

My best advice is that after someone gives you a new instruction (maybe about something you’ve never been asked to do before) repeat back to them what you think you heard, and try to point out the part of the expectation that seems off to you. For example “Oh, so you want me t...

October 24, 2018

Hi Girls,

The first thing to remember is that everyone has thoughts like this. It’s kind of a funny thing about being human— we want to connect with other humans, and we hope they want that, too so that we can make friends and new families. It can be helpful to remind yourself that just like hearing a noise and getting startled, because you don’t know if you’re body is safe, worrying about being liked is just your brain getting...

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