Ask Jil: Answering your questions about Females with Fragile X

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.


Jil Frey

In this piece, Jil discusses scenarios and questions relating to girls and women with Fragile X, including: emotional issues, vulnerability, budgeting, planning and much more.



Emotional:

Q:“I get worried that people don’t like me” “I’m worried that I’m not good enough”. “I get upset about lots of things”.

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 startled because it doesn’t know if your emotions are safe. The second thing to remember is that because feeling this way is so human and typical, there is no reason to be hard on yourself for having these thoughts. Being worried is very annoying, yes, but make sure you forgive yourself for not always feeling your best. The third thing to remember is that you, as you already are, are enough. You are already a wonderful person with a lot to offer, you are already someone working hard to get even better every day, and you are already worthy of love, appreciation, and respect. Yes, some things are easier for other people, which is frustrating, but the fact that you know what’s challenging for you, means you definitely can think of just as many things you’re really good at, too. Try spending some time thinking about those things, too!


Q: “I know I take things too literally and I don’t understand what is expected of me.”

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 to put this big box up here on top of the smaller boxes? Won’t that be too heavy?” Also, if you don’t know what’s expected of you, ask! A great way to get used to doing this is to find a phrase that you can memorise and use every time you don’t understand. For example, if you’re stuck standing around, you can ask “How can I help?”, “Do you need anything?”, or “What should I do next?” It also might be a good idea to request some feedback from others about if you’re doing something correctly if you’re ever unsure. Phrases that can do that are “Is this right?”, “Do it like this?” or “Let me know if I should do this differently”.


Q: Mums say how lonely and isolated their daughters are. But they are so shy they can’t get over this hurdle.

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 conversing with strangers should be discouraged, but there are other ways to find safe social links for our girls to practice chatting, such as talking to other parents with children with or without similar challenges and helping the two exchange contact information. Once these connections are made digitally, our girls will have a better idea of what to expect from the other person, and setting up plans becomes easier. Tip: for initial “hang-outs” the best options are short and structured (seeing a film or playing a board game versus dinner and talking which is more open-ended). Also, if your daughter expresses interest in a specific peer that you do not know, encourage her to invite that peer, along with 2-3 others, to a party or gathering celebrating some kind of holiday or event. It’s easier for young people to accept or decline invitations that seem less intimate (such as a party) as opposed to a one on one “hang out” which they may feel pressure to accept without feeling comfortable (which doesn’t lead to healthy friendships).


Q: Some mums worry that they make things up about other people and themselves. They have found themselves really not knowing what to do in these is situations.

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 or doing. So, when remembering, the memories of feelings are very clear, but the actual details of what happened are out of focus. That means our girls retell stories that include incidents that may not have actually taken place when they are simply attempting to explain the emotion they remember by reporting that things happened that would clearly explain that emotion. For example, they may remember someone saying “you’re stupid” when what they really remember is feeling “stupid” per what the person said to them (though the name-calling didn’t actually happen). In these cases, it’s important to ask our girls what they felt, versus what took place. This allows them to describe what they know best, and often times, regardless what happened or didn’t, feelings are the most important to address, validate and plan for. The second thing to remember is that our girls are very good at mimicking others in order to socially “keep up”. That means sometimes they may boast about things that aren’t true or change their word choices or statements of opinions depending on who they are speaking with. When it “doesn’t matter” (ie. There is no grave social consequence to the small lie) let these things go. It really is okay if our girls pretend to have seen a movie they haven’t seen. When these small lies have bigger consequences, let your daughter know what she can say instead when she’s in the situation again. However, the most important thing to remember is that any feedback about these kinds of issues should be given warmly, in private, and in a way that lets our girls know that we understand that they don’t always do these things on purpose. When parents “call out” our girls, they don’t have the typical teenage or young adult reaction of getting angry at and rejecting the parent— our girls get angry at and reject themselves.


Planning/Organisation

Q: “Sometimes I get asked to do something, but I just can’t get myself organised. I often find I haven’t finished something properly and people get cross with me. I’m frustrated with it myself”/“Why do I get so distracted? I need to be better organised-what would help me? Because sometimes its easier not to do things than this.”

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 search online for some cool ideas!). The second step is to separate out whatever you are organising in one pile or one list (if it’s ideas you are trying to organise) and then put a container or folder to organise into (or a “finished” column of your list) across from it. Slowly move things from the pile to the container, folder or “finished” column. As soon as your brain starts seeing the “things that are not organised yet” pile get smaller, the more relieved you will feel. The third step is to add a “double check” step to anything that you have to do that is for someone else or that someone else will grade or evaluate. Challenge yourself to make three to five changes to your work to make it even better before you turn it in. This will help you have fewer errors, and turn in better work!


Q: I can’t seem to prioritise things and I end up doing the wrong thing first. Or I don’t realise something should take priority over another thing.

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 a certain time. Everything else can wait until after these two things. If you don’t know where to start with a project, my best advice is to start with what is EASIEST. By getting easy tasks done and moving them over to the “finished” pile or column (liked we talked about in the last question) you start to feel relief already. That way, when the challenging tasks are all that is left, you can approach them with confidence of knowing everything else is done.


Q:” I really don’t like it when something changes either.” How could I manage this better or should I just make people understand this is difficult for me.”

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 can include small stuffed animals, pictures of your favourite people, or scented lotions (favourite smells are really good for reminding you of good things). That way, when a change happens and you are uncomfortable, you can find your objects and remind yourself of your “happy place”. Once you’re feeling more calm and ready, then you can make a plan to adjust to the change.


Vulnerable

Q: My Mum worries that I would agree to anything to be part of a group or have a friend. My Mum worries that I don’t understand this and can put myself in risky situations. I know she worries about me meeting someone new or having a boyfriend. I need to understand how to keep myself safe, but I would like to meet someone.

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 always understand why this would stress you out. To address this, the best thing to do is for Mums to establish some mini “quizzes” about areas of safety. These little quizzes should be no more than 10 questions long (we don’t want them to be overwhelming) and should include “what would you do if” situations about your particular worries. Ask your daughter these questions, and listen to her answers. If there are things you want to add or change about how she answered, wait until the end and then review all 10 again until she is able to answer all correctly. This is a good way to make sure she HAS the right information. The second step is to make sure that she USES the right information when she needs to. Girls, the most important thing for you to do is sort out who your “person” is. At my company, Ladderbox, we say that your “person” is someone who you feel comfortable talking to who knows what you need and what you want, and knows when you’re not acting like yourself. This should be a person that you trust to make decisions for you if you are not able to make those decisions on your own, and should be a person who’s advice you will listen to even if it’s not what you want to hear. This person can be a parent, a sibling, a friend, a teacher, or anyone else who you think fits this description for you. Then, it’s your job to talk to your “person” about any new friends, new romantic interests, or new activities you want to try out. This way, you have the benefit of not only using all of your skills, but all of your “person”’s skills, too, as you make decisions!


Q: Sometimes I can get confused about other people’s expectations and what it means to have a friend. I sometimes think everyone is my friend if they’re friendly towards me.

Hi Girls,

This is also something that’s confusing for a lot of people. The first thing to sort out is what you want a friend to do in your life. Are you looking for someone to have fun with? Are you looking for someone to tell secrets to? Are you looking for someone to help you with something that is hard for you to do? These are all different kinds of friends, and there is a different plan for how to find each one. The second thing to sort out is how it hurts you when you think someone is your friend that isn’t your friend. Does the person you want to be your friend do all the same things for you that he or she is asking you to do for them? Is everything you do together safe for your body (doesn’t cause you pain or discomfort) your feelings (doesn’t make you afraid or leave you feeling “stupid”) and your mind (you understand what you’re being asked to do)? These things have to be true for someone to be a good fit for friendship. By being able to answer these questions, you might find it easier to figure out who in your life right now is your friend, and who isn’t. Also, keep in mind, someone may call them self your friend, but that doesn’t mean that you have to agree that they are.

Q: I like going on my phone but Mum worries about me going on different web sites and whom I’m talking to.

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 any information about how to find you. Online friendships can be very fun, but they are online friendships— that means there are different friendship rules than friends you know in real life. That being said, it’s still a good idea to ask your “person” if a friend you know in real life is expecting something from you like money, gifts or pictures, just in case.


Budgeting/money

Q: “I know I’m not great with money and I need help to keep on track. What do I need to learn about budgeting and making sure I’ve got enough? I don’t want to get into debt, but I want to be able to buy things I want. I know I’m not that good at maths and it worries me.”

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 the things you need in order to take care of yourself (food, housing, travel, etc.) and how often you need to pay for those things. Once you have all of this information listed, bring your list to a trusted adult who you know lives independently and might be able to help (we don’t want strangers knowing too much about your personal finances). Have that person help you figure out how much money you usually have left over after all your needs are met, and make a plan of how often you will have enough money to buy the things you want. If you keep finding that you don’t have enough money to buy the things you want as often as you want to, you might want to try to find more ways of earning or saving money, such as getting eating at home instead of going out to eat, or asking for more hours of work at a job you may have.


If you have any questions that you would like Jil to address, please contact us!

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