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You will also find strategies for special events that take place outside the home, such as taking vacations and airplane travel. The importance of some type of daily planner cannot be over-emphasized.

When consulting with parents regarding behavior issues, the topic of time-out comes up during the majority of my conversations. Parents and professionals alike have used time-out as an effective tool for many years—even before it was called time-out. Research has supported its usefulness with typically developing children as well as those with delays such as ADHD. Most parents whom I have consulted for say they have tried time-out at one time or another, and frequently state that it did not work for them.

This was often puzzling to me, so in an attempt to find effective intervention strategies I probed into how the families were using time-out and where the problems were occurring. I had them demonstrate their techniques for me. These conversations and observations revealed that it was not time-out itself that was ineffective, but its application to children with Fragile X syndrome. As I worked more extensively with these families, I found time-out could be an effective part of a comprehensive behavior plan, but only when I modified the process to fit the physical and developmental profile of the particular children.

Clearly, adaptations were needed for this to be a useful tool for them. This accords with our knowledge that behavioral strategies designed and implemented with children who are typically developing frequently prove ineffective for those with special needs unless adaptations are employed to address their specific profiles. In order to understand the adaptations, one must first understand the original construct.

Resources — National Fragile X Foundation

Clinically, time-out is considered a punishment for inappropriate behavior. It is defined as time away from positive reinforcement. Many counselors, researchers and therapists use variants of this theme to define the technique. This differs slightly from removal from a situation as a natural consequence. For instance, a child who spits his or her food during dinner loses the privilege of sitting with the family to eat.

Or a child who acts out in circle time may be asked to leave the group. This is a natural consequence for that particular behavior, and can be used effectively in many situations. A notable exception would be if the original purpose of the behavior was to avoid the group activity. These strategies are based upon the fundamental principles of time-out, while incorporating adaptations that address the fact that children with FXS have language and attention difficulties that are best accommodated through additional considerations for repetition, consistency and predictability.

Educational Resources.

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Home Schooling and Fragile X Syndrome. Lesson Planning Guide. This Guide provides practical information that includes: A background on Fragile X syndrome. Descriptions of behavior and learning styles. A discussion of educational and community resources. Sample lesson plans for children with FXS at a variety of developmental levels.

Strategies to facilitate the inclusion of children with FXS.

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Net Additional Resources can be found on Educational Resources. Therapy and Sensory diet.

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Sensory Diet Sensory Diet Concept A sensory diet is an occupational therapy intervention strategy devised to attain and maintain appropriate arousal states throughout each day. A sensory diet can help maintain an age appropriate level of attention for optimal function to reduce sensory defensiveness. Martin states in Principles of Neuroscience: Sensory systems are not only our means for perceiving the external world, but are also essential to maintaining arousal, forming our body image and regulating movement.

The neuroscience evidence suggests that several key types of sensory input have the qualities required to produce these effects. An occupational therapist trained in sensory integration has the expertise to know how to use these neural principles to design an appropriate sensory diet. She has worked in the fields of Fragile X syndrome and neurodevelopmental disorders for more than 25 years.

She received both her undergraduate and graduate degrees from the University of Montana, Missoula. She is a leading pediatric occupational therapist OT involved in clinical treatment, research, mentoring, and training regarding OT intervention for persons with neurodevelopmental disorders, especially Fragile X syndrome and autism.

Fly with Me Fund. Clinical Trials for Medications Families often read or hear about medications to treat FXS being developed or actively used in research trials. Sign Up. Adults: Life Planning. IDEA mandates educational alternatives for eligible children and adolescents with developmental disabilities through age 21, though there are some states who offer services beyond that age. Once the young adult leave the school system, each state provides an array of support for the adult person with a developmental disability, based on eligibility, need, and the wait list for services and many states have a wait list for adult services.

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The programs and services offered vary not only by state but also by localities within each state, and the adult services are offered by various agencies and these services often vary from agency to agency. For more information about the adult services in your area, contact your local disability organization. Adolescent and Adult Project. Smoothing the Transition to Successful Adulthood Combination of video vignettes and written resources, designed to be used in conjunction with each other. Thanks to the generosity of our supporters, the following information is provided to you, on our website, at no charge.

Table of contents The following sections of the Adolescent and Adult Project are accompanied by videos and are referenced in the document. Planning for College. Community Living. Overview Each state provides an array of residential programs. These vary not only by state but by localities within each state. The range of residential services also varies among provider agencies. Residential services may range from independent apartments with minimal supervision to supervised apartments, group homes, and host homes where a child lives with another family.

There are also residential settings for families in a position to pay privately. Because there tend to be extensive waiting lists for residential services in many states, parents often look for other options. One trend is parents getting together in a community to set up independently operated programs for their children. When parents do this, the options are almost endless. Some of them are listed below.

A group of parents may coordinate their efforts to buy a house and pay for a care provider to be responsible for their children. Transition to a residential program should ideally be gradual.

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  • One method of transition that parents may find helpful is to seek respite services at a residential agency before their child moves in. This affords their child the opportunity to both test the environment and meet other residents and caregiving staff. Success in living away from home can be maximized by: Teaching your child independent living skills while he or she is still living at home. Investing time to find the best living situation for your child, as there is no one best way to approach this aspect of his or her life.

    Cultivating friendships for your child. Finding dedicated and caring people willing to work with your child and family. Making sure your child is active and engaged in the community during the day. Ongoing family involvement and advocacy. Employment and Daily Activities. I'm ready to just have this partnership around owning and living in this building. We even have a tenant now, so we're kind of like landlords together. I miss certain things about our life that we did have, but I'm grateful we've had this building and the FreeSpace project because it kept us working together.

    It's also maybe made part of the healing process take longer than it would have otherwise. My current partner isn't allowed to live here, or even come to events here, and I don't want to move from my house. We have this rule where we can't bring over people we're dating. Now that it's been a while, I told Jared it's OK if he brings people over and I want to bring over my current boyfriend, but he's still not OK with that. I'm hoping that once he's is in a relationship, it will be easier. Eric and I have been broken up for four months after dating for three and a half years.

    We signed the lease here two years ago. I didn't think we'd ever break up. He's my best friend.

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    Living together is not the easiest thing to do. I don't even know if it's the healthiest thing to do either. It's like having a constant open wound. My new boyfriend, Tommy, is surprisingly cool and chill about it. He's been ridiculously understanding, and he's respectful to Eric, which is the most important thing to me. If I'm going to be with someone, he needs to be able to respect my relationship with Eric. Tommy knows everything, too. But we don't have sex if Eric is here. It does make me uncomfortable.

    I'm sure it would make Eric uncomfortable to think about it. Eric sleeps in the bedroom we used to share. I moved into his studio and have his old bed from before we were together. We have our own space, and I think that's really good. It would be way too hard if we were sharing a bedroom. Sometimes, if we don't want to be alone, we sleep in the same room. We've hooked up since we broke up. I don't think either of us regret that, but I think it's probably pretty often that I've considered getting back together.

    He was in a few really serious long-term relationships, and I think he's trying to do casual, physical things for a while because he didn't get an opportunity to get to do that when he was younger. He hasn't brought anyone back here yet, but I remember the first time he slept with someone new. It had been a couple weeks into the break up, and I carved up the kitchen table with a knife. I freaked out. I had a huge mental breakdown. I would hope that doesn't happen again and that's why we're not having him bring someone over right away. I would probably just sit in my room and cry until she left or just leave.

    I don't know how thin the walls are. For the first month, I didn't stay here most of the time. I was staying the night at my friends' houses and on people's floors. I couldn't even look at him. For the first two months, every time we were home together, we would cry. It wasn't a lot of fighting. A lot of it was the same conversation over and over, and we got nowhere. We were drinking a lot and not sleeping. Now, we talk so much more than we did before. Every conversation is really emotionally open now.

    He was always pretty emotionally guarded, and we needed to talk. Sometimes it's a whole day of "this is how I feel. The longer it goes on, the more it seems like there are good days.

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    Our lease is month-to-month now, but I have no intention of moving out. When I get mad, I say I'm going to leave, but I like living here. I don't think we'd ever get back together in a strict, monogamous thing—not for a long time. I can't imagine not being in each other's lives significantly, even if we never have sex ever again.

    That was never the basis of our relationship anyway. Follow Belinda Cai on Twitter. Sign up for the best of VICE, delivered to your inbox daily.