This classic unisex jersey short sleeve tee fits like a well-loved favorite. Soft cotton and quality print make users fall in love with it over and over again. These t-shirts have-ribbed knit collars to bolster shaping. The shoulders have taping for better fit over time. Dual side seams hold the garment's shape for longer. • 100% Airlume combed and ringspun cotton (fiber content may vary for different colors) • Light fabric (4.2 oz/yd² (142 g/m²)) • Retail fit • Tear away label • Runs true to size • Printed in USA ** Visit this link to check out the rest of our products in this product section: https://www.etsy.com/shop/JWcrafter?search_query=rett+syndrome **

AJ Tesler and his wife, Jenny, are inspiring families to think differently about Rett syndrome.

Rett syndrome is a neurodevelopmental disorder seen in girls.There is no cure for this condition, and treatment is aimed at maintaining function as long as possible. One approach is to engage the child in therapeutic activities. Here are some of the different types of activities to do with children who have Rett's, and their benefits.

A blog to tell the story of our little girl Grace who has Rett Syndrome (r168x mutation)

This classic unisex jersey short sleeve tee fits like a well-loved favorite. Soft cotton and quality print make users fall in love with it over and over again. These t-shirts have-ribbed knit collars to bolster shaping. The shoulders have taping for better fit over time. Dual side seams hold the garment's shape for longer. • 100% Airlume combed and ringspun cotton (fiber content may vary for different colors) • Light fabric (4.2 oz/yd² (142 g/m²)) • Retail fit • Tear away label • Runs true to size • Printed in USA ** Visit this link to check out the rest of our products in this product section: https://www.etsy.com/shop/JWcrafter?search_query=rett+syndrome **

In our SLP training programs, few of us learned about Rett Syndrome or how to provide services to children with that disorder. We’re so pleased to have a guest post on AAC services for childr…

Rett Syndrome is a debilitating neurological disorder that predominantly affects females. Here are the facts, symptoms, and diagnosis of Rett Syndrome

"It's the most important thing."

Every 90 minutes, another girl is born with Rett Syndrome.

Therapists are often asked what equipment is generally recommended for a certain diagnosis. This is a very difficult question to answer on many regards. First, each child with a specific diagnosis presents with individual needs that are unique to them and their caregivers/families. Secondly, there is often great disparity between the levels of assistance children require within a diagnosis. The goal of this article is to try and steer caregivers towards equipment that has traditionally worked well for children with the diagnosis of Rett Syndrome. Within the article, different equipment needs will be explored with recommendations made for children who are able to walk and/or require minimal to moderate physical assistance and for children who require moderate to significant assistance for postural support and to complete daily activities. Equipment will be explored to look at seating/positioning, bathing/toileting, mobility, recreation, and lifestyle. First, let’s explore seating and positioning. Seating and positioning for this purpose is defined as functional seating. It allows for activities of daily living to occur (i.e. eating, learning, sitting with peers and family, accessing the environment). The first seat that comes to mind is the Rifton Activity Chair. This seating system is extremely versatile and will meet a girl’s need regardless of the level of physical capabilities. This seating system is available on a stationary base or a mobile base, it has the option for a high-lo base to make transfers easier or be able to work at a variety of heights, and it has the option for tilt and recline as well as a wide array of positioning supports. One of the best features about this seating system is that it can be modified to meet changing needs by adding or removing the postural supports. This is truly a chair that is highly recommended.Second, let’s discuss bathing and toileting. Within this category, first it has to be determined if one piece of equipment will meet all needs or if two separate pieces of equipment are required. Once this is decided, here are the recommendations for the different scenarios. For girls that require less physical support, a simple toileting support like the Columbia Toilet Support or the Rifton Blue Wave Toileting System may be all that is required. Girls that require more significant physical assistance may benefit more from the postural support and added features of the Flamingo by Snug Seat. For bathing, a roll in/walk in shower is ideal but not always possible. If a roll in shower is available, the Rifton Blue Wave toileting system or the Flamingo can be used for showering as well as toileting. It is a two for one. If the traditional tub/shower combo is the only option, then there are a few pieces of equipment that can help increase safety. Depending on the size of the child and their ability to assist with a transfer equipment can make a huge difference. If the child is under the age of 6-7 then a bath seat like the Leckey Advance or the Snug Seat Manatee will meet the needs of most children regardless of the level of physical involvement with the use of the positioning accessories. If a caregiver has a bad back and is unable to lift or if a child is larger and more difficult to transfer, the Robby by Otto Bock with the Quicklift II Bath Lift System may be the best bet as it is light weight and easy to store. The easy storage feature is a plus especially if the bathroom is shared with other members of the household. Another product that is also worthy of consideration is the Columbia Elite Sliding Transfer System. This system allows the caregiver to transfer a child into the system and then roll it into the bathroom. Once in the bathroom, the device attaches to a base that is in the tub and then the child and bath seat are slid across the platform into the tub. A hand held shower is all that is needed to complete the bath. The Manatee by Snug Seat also offers a tub transfer feature. Bath equipment can be especially difficult to figure out the best fit. There are many things to consider when selecting a piece of bathroom equipment beyond the child including the size of the bathroom, number of people using the bathroom, the doorway width (usually the smallest in the house) which can limit how the bathroom is accessed, the features in the bathroom (i.e. tub/shower, etc.) and how the bathroom is organized and laid out. If at anytime, help is needed to help determine which piece of equipment will best fit your individual circumstances, please feel free to contact Tadpole Adaptive for guidance and assistance. The third area is mobility. Within this section, the primary focus will be for partner assisted mobility devices for long distance mobility and for everyday use. Gait trainers are not being discussed within this article because each child may benefit from a different style and this equipment needs to be trialed with a therapist. Also, many girls walk better with hand held assistance due to a limited tolerance for holding onto the handles of a gait trainer. Now, let’s go back to the mobility devices. For girls that are able to walk but just become fatigued with longer distances, a simple adaptive stroller is a great option. The Convaid stroller line has many features and options to choose from. The EZ-Rider is extremely light weight and offers the least postural support so it may be perfect for the families that would have infrequent use. For the families that would use it more frequently, the Convaid Cruiser is a great option to explore. It is positioned in tilt for fatigue management and offers additional postural supports. For girls that require the mobility device for the majority or all of their mobility needs an adaptive stroller is still a good option as long as custom supports are not required due to scoliosis or other orthopedic changes. The Safari and Rodeo by Convaid are great options to consider. Both of these strollers offer tilt and recline to meet posture and fatigue management needs. The next category to delve into is recreation. Within this category, we will explore options for the active family. Freedom Concepts is a company that specializes in adaptive bicycles. The great thing about these bicycles is that they offer a wide array of positioning options and the capability for the caregiver to assist with propelling to help decrease the risk of fatigue. An additional piece of equipment to consider is a jogging stroller which provides a comfortable way for a child to travel while parents and caregivers enjoy the outdoors. The Special Tomato Jogger is a great option for the smaller child (smaller referring to height) that collapses easily and is economical. Larger jogging strollers are available, but play close attention to the size and ability to fold. The last category is lifestyle. This section refers to equipment that can just make life easier. The first piece to explore is a specialty bed. Beds by George is a company that has designed special needs beds with a wide array of features and accessories to give a family peace of mind at night. These beds offer multiple features including side rails, high-lo feature and furniture like design. Second, a car seat can be a must for traveling. For girls that need just a little more than the seat belt to be secured in the car, the EZ-On Vest is a great option to look at and is very economical. Girls that need a little more support to a lot of support while riding, the Recaro line from Thomashilfen is a great product family to consider. These products offer an optional rotating base to make getting in and out the car easier. Finally, fatigue management is a big consideration with Rett Syndrome. Many girls just need a place to relax and chill out. Preferably not on the floor, as this is very hard for caregivers to assist with getting up and down. The Chill-Out chair by Freedom Concepts is a great option to explore. It offers postural support and envelops the child for optimal comfort. The best way to describe it is a comfy recliner for your child. It is available on an optional mobile base, with a tray and in a variety of colors and fabric options so that it can be included in the family room and look like a piece of furniture. Now that all categories have been explored, comes the question, how will I pay for all of this? The good news is that insurance will cover some of these items. Insurance will typically pay for 1 seating system or mobility system; the strollers and activity chairs are coded the same. Specialty beds are typically covered if proper documentation is provided, but it may be a long fight. Toileting systems and car seats are state dependent as far as coverage and bath chairs are typically not covered. However, waiver programs will provide funding for these systems. This can be a long process since it typically requires a denial from the primary insurance. Other funding options include holding a fundraiser, contacting the local Lions or Kiwanis organizations, the Pepsi Refresh Project, and the United Health Care Grant (one does not need to have UHC insurance to apply). If a fundraiser is planned, please contact an attorney for special needs to properly establish a trust so that the funds can not be taxed as income which may potentially result in ineligibility for state funded insurance and waiver programs. Lastly, Tadpole Adaptive understands the financial challenges that many families face. For this reason, Tadpole Adaptive has developed two options to assist with funding for the necessary and much needed equipment. First, there is the Tadpole Adaptive Registry. This is a special program modeled after a traditional gift registry. A family can create a web page and list the desired equipment, the cost and why it is important. The link can be shared with family and friends through social media and people can then directly donate money to the family and registry for the purchase of the equipment. It is a great way to answer the question regarding what to purchase for holidays and birthdays. For family members that may be less tech savvy the money can be sent directly to Tadpole Adaptive and it will be applied to the registry. Second, there is the 6 months same as cash option through Tadpole Adaptive. It can be difficult to come up extra money on the spot for a big purchase but when it can be spread out over a longer duration, it becomes possible to manage. Navigating the world of adaptive equipment can be extremely frustrating, overwhelming, and difficult. If even it becomes too much, please feel free to contact Tadpole Adaptive where we are always willing to provide unbiased information, guidance, and advice.

Rett’s syndrome is autism spectrum disorder that affects girls. The causes of Rett’s syndrome are genetic. Rett’s syndrome in boys is very rare, but if it occurs, it is very fatal. Know about some of the causes and stages of Rett’s syndrome.

Salomé est une petite fille atteinte du syndrome de Rett. Elle est pleine de vie. Ses parents sont venus nous livrer leur témoignage sur leur quotidien

Working with girls and women who have Rett Syndrome can be a unique and wonderful experience. Rett Syndrome is a neurological condition that effects only girls (with a few, rare exceptions). Although it varies in presentation from girl to girl, in general, those with Rett Syndrome are primarily alternative communicators, they present with hand wringing or similar movements and they tend to have amazing eye contact and eye pointing skills. Most of the girls are very motivated by music and music can be an ideal teaching modality. About half use wheelchairs for all mobility. Most have seizures, have swallowing difficulties and have issues with unintentional breath holding. Sleep disorders are common as are certain lung and heart issues. Rett Syndrome used to be considered a form of autism, but it is, in fact, a specific genetic condition. Girls with Rett Syndrome used to be automatically assumed to have very severe to profound developmental and intellectual disabilities. However, as more and more people are willing to practice the least dangerous assumption and presume competence and as technology has evolved to include somewhat affordable eye tracking based alternative communication systems we are finding that many, if not most, girls with Rett Syndrome have been dramatically underestimated and, sometimes, educationally neglected. Here are just a few tips for working with girls and women who have Rett Syndrome in our classrooms and in other educational settings. Bringing the hands to mid-line (the center of the body) is one of the key diagnostic features of Rett Syndrome. This can be hand washing movements, hand clenching, hand mouthing or clapping. The girls cannot control this movement, in fact, an attempt to control this movement may be distressing and thus increase it. Therefore, rethink hand use goals. hand wringing and related stereotypies are a hallmark of Rett Syndrome functional hand use is occasionally possible for some girls with Rett Syndrome, however, as a general rule goals that work towards hand use should be rethought. such goals are likely to be lead to frustration for the girls and for staff. Whatever energy or effort the girls must put forth to meet such goals will be a heroic effort in battling a symptom of Rett Syndrome, it is unfair to ask her to do this while doing other important things - like learning look through your IEP. If any of the goals for communication, life skills or academics call for the girl to use her hands especially using her hands in a very specific way look for other ways to meet the goals. Consider eye gaze from communication, switches with a head or foot movement for activating adapted items and generally adapting the environment to be accessed without hand us it is ok to have her use her hands, to encourage her to use her hands, but having it be the goal may not be best overall some girls do have more hand use than others, a few can hold a cup or spoon or even activate a device, but consider the effort required overall as you decide what to spend energy on Remember what apraxia (a key component of Rett) is: a inability to perform a task, especially speech even though: the request is understood there is willingness to do the task the muscles work properly the task may have already been learned This means you can't assume a Rett girl doesn't understand, is "acting out" or "refusing", is physically incapable or that she has forgotten what she has learned you can assume that the more the girl wants to do or say something the harder it will be and she is inevitably more frustrated than you are the girl with Rett will be consistently inconsistent, not because of intelligence or behavior but because of apraxia a burst of strong emotion may override apraxia Also since you can't measure her knowledge fully because of the combination hand stereoypies and apraxia of speech, even using high technology, you must assume that she is competent to avoid causing an developmental disability through educational neglect Anxiety severely affects girls with Rett Anxiety is a massive issue in Rett Syndrome. The girls are often times unable to communicate their anxiety or ask questions to clarify situations which may be causing anxiety. Anxiety can present as increased stereotypies like tooth grinding, hand mouthing, breath holding and other behaviors; it can also present as shutting down (closing eyes, appearing sleepy) or with crying or yelling. Very rarely, some girls may hit their heads, bite their hands or otherwise hurt themselves. Teachers and therapists should seek to create a low stress, low anxiety enviroment by explaining changes in the environment, in staffing, in anything that can cause stress teaching about emotions and how to communicate about them ensuring the girls have the words to talk about anxiety using social stories to teach about how to decrease anxiety and to prepare the girls for difficult situations be aware of what your students particular anxiety markers are and intervene at the first sign know what music, sensory experiences and people your student finds calming and have them available, give the girl a way to ask for these things Eyes are usually the best means of communication Although a few girls can speak some words and a few others can use their hands or switches to activate augmentative communication devices most girls do best when using eye gaze as a way to communicate Start evaluation for high technology eye gaze communication system early, at diagnosis or between nine months of age and two years, if possible there are no prerequisites for high technology eye gaze based communication, girls do not need to use low technology eye gazed interventions first, they do not have to master PECS or picture symbols first. all of the best practices of Augmentative and Alternative Communication apply to eye gaze such as: implementation of a robust vocabulary, intensive and ongoing aided language stimulation and implementation across all environments Trying a high technology eye gaze system Be sure you work with a company representative and/or AAC specialist who is knowledgeable about both Rett Syndrome and eye gaze tracking technologies, but if there is no one available still proceed with trying high technology eye gaze systems Explain to the girl well ahead of time and more than once what a high technology eye gaze system is and what it is for, show videos of other girls using such devices Schedule the demo and trial of the system for when the girl is usually most alert, for most girls this is the morning Do not have the girl present for the boring set up or "how this works" session with the company representative, do not bring her in until you are ready for her to start using the system! Do NOT waste time trying to calibrate the device when the girl arrives, calibration has no built in rewards and is hard to understand why is it useful from the girls perspective. It tends to cause the girls anxiety. Have the rep turn on a fun sensory activity for the girl to try with her eyes. She will likely "get it" right away. Move from there into a communication activity with a large targets and a big pay off (something exciting happens when the buttons are activated even if that something exciting is you doing what the girl tells you - sing, dance, jump). At this point the girl may be tired. Take her cues. Stop before she has any sense of failure. At the next visit move through the same sequence more quickly and then try calibrating. Rarely after two or three sessions when the girl is awake and feeling well is there then not enough evidence to get a month long trial of a system for further evaluation. Literacy is a human right! Rett Girls can read! start teaching girls with Rett Syndrome letters, letters sounds, letter blending and word segmenting along the same time line as typical peers but, if the girl is older it isn't too late, start now, reading and spelling is being accomplished by girls and women with Rett Syndrome everyday, be a part of this reading revolution and teaching reading and spelling now Music as motivation girls with Rett Syndrome can be very motivated by music and may be more able to learn when music is involved consider music therapy and work to have it consist of more than cause and effect activities and listening to music, many girls are able to contribute to writing lyrics to music using there speech devices and many find music a way to relieve anxiety and express emotions use music and music videos to teach key concepts, you can find a music video for just about any educational concept on YouTube! Connect with resources Rett Syndrome Educators Network RettSyndrome.Org Rett University Rett Syndrome Research Trust GirlPower2Cure Facebook IRSF Communication and Device Exchange

Simple Rett Syndrome design on t-shirt / hoodie / tank top / long sleeves for men and women. Our clothing and size selections lets you have it as a perfect gift for yourself or your special someone: your wife, husband, partner, mom, dad, grandma, grandpa, daughter, son, kids, toddler, baby, sister, brother, uncle, aunt, nephew, niece, cousin, family, friend, boyfriend, girlfriend, bestfriends, workmates, officemates, for her, or for him ♥ Other Rett Syndrome designs: https://www.etsy.com/shop/GenThreadApparel?search_query=Rett+Syndrome Visit our shop for more Illness / Disorders & Awareness related apparel ♥ Prints & Ships Primarily from the U.S.! Every product is queued and printed upon order and we offer FREE shipping for domestic USA destinations. •••••••••• MATERIALS ◆◆◆ADULT SOFT TEE ◆BELLA + CANVAS 3001 ⚬FIT: TRUE TO SIZE The Bella + Canvas 3001 t-shirt feels soft and light, with just the right amount of stretch. It's comfortable and the unisex cut is flattering for both men and women. We can't compliment this shirt enough – it's sure to be your next favorite! Solid colors are 100% combed and ring-spun cotton Heather colors are 52% combed and ring-spun cotton, 48% polyester Fabric weight: 4.2 oz/y² (142 g/m²) Pre-shrunk fabric Side-seamed ◆◆◆ADULT BASIC TEE ◆GILDAN 64000 ⚬FIT: TRUE TO SIZE A staple every wardrobe should have. The shirt is made of durable cotton fabric and has a double-stitched bottom hem and sleeves. This shirt is long-lasting enough to become an everyday favorite! Solid colors are 100% ring-spun cotton Sport Grey is 90% ring-spun cotton, 10% polyester Dark Heather is 65% polyester, 35% cotton Fabric weight: 4.5 oz/yd² (153 g/m²) Pre-shrunk for extra durability Tubular construction Shoulder-to-shoulder taping Quarter-turned to avoid crease down the center ◆◆◆WOMENS TEE ◆Anvil / Gildan 880 ⚬FIT: FITTED (Size run smaller, order 1 size up if you prefer a looser fit) You can't help but feel great in this fashionable, feminine cut, ring-spun tee from Anvil. It's soft, light and will hold up to repeated washings. Solid colors are 100% combed ring-spun cotton Dark Heather is 65% polyester, 35% cotton Fabric weight: 4.3 oz. 30 singles thread weight Double-needle stitched sleeves and bottom hem Side-seamed ◆◆◆WOMENS TANKTOP ◆Next Level 6733 ⚬FIT: TRUE TO SIZE This Women’s Racerback Tank Top is soft, lightweight, and form-fitting. The tri-blend fabric gives printed designs a cool, faded look while the raw edge seams add an edgy touch. 50% polyester, 25% combed ring-spun cotton, 25% rayon Fabric weight: 4.2 oz/yd² (142 g/m²) Fabric is laundered to reduce shrinkage Raw edge seams ◆◆◆UNISEX HOODIE ◆Cotton Heritage M2580 ⚬FIT: FITTED Classic unisex hoodie with a front pouch pocket and matching flat drawstrings. The 100% cotton exterior makes this hoodie soft to the touch. 65% ring-spun cotton, 35% polyester Dark Grey is 60% ring-spun cotton, 40% polyester Grey is 55% ring-spun cotton, 45% polyester Fabric weight: 8.5 oz/yd² (288.2 g/m²) Front pouch pocket Matching flat drawstrings ◆◆◆YOUTH TEE ◆Bella + Canvas 3001Y ⚬FIT: TRUE TO SIZE This Bella + Canvas youth tee is light, comfy, and has just the right amount of stretch youngsters need for an active lifestyle. The soft cotton yields colorful prints, so your designs can make this crowd favorite into something special. 100% combed and ring-spun cotton Heather colors are 52% combed and ring-spun cotton, 48% polyester Fabric weight: 4.2 oz (142 g/m2) Pre-shrunk fabric Side-seamed ◆◆◆KIDS TEE ◆Bella + Canvas 3001T ⚬FIT: TRUE TO SIZE A good tee is an essential for every age, so our Kids Tee with its light and soft ring-spun cotton is just what's needed for the ever-moving toddlers. The fabric is the perfect blank canvas for your designs! 100% combed and ring-spun cotton Heather Colombia Blue is 52% combed and ring-spun cotton and 48% polyester. Fabric weight: 4.2 oz/yd² (142 g/m²) Pre-shrunk fabric Side-seamed •••••••••• PRODUCTION & SHIPPING ◆Check out the Production & Listing Estimates for each Listing Section for Estimated Arrival ◆SHIPPING UPGRADES - At the moment we only offer regular shipping

Salomé est une petite fille atteinte du syndrome de Rett. Elle est pleine de vie. Ses parents sont venus nous livrer leur témoignage sur leur quotidien

This Christian Special Needs Shirt is a heartfelt expression of faith and support. Perfect for those advocating for Angelman Syndrome, Rett Syndrome, Batten Disease, and other special needs alike, this t-shirt is designed to inspire and uplift. Whether you're spreading awareness or showing love for a unique soul, this Christian apparel piece is a meaningful way to share your faith in God's perfect plan. Wear this tee with pride and support these important causes with faith and compassion. The model is wearing a size L. For additional information on the fit, please refer to the size chart. Specifications: • Gildan 64000 • Seamless double-needle collar • Double-needle sleeve and bottom hems • 100% combed and ring-spun cotton • Taped neck and shoulders for durability material: • 100% cotton • Fiber content may vary by color Care instructions: Wash: Machine wash warm (max 40C or 105F), wash garment inside out with similar colors Tumble Dry: Low Bleach: Only non-chlorine Dry Clean: Do not dry clean Iron: Don't iron Production: This item is produced in 9 countries: Australia, Canada, Germany, France, Italy, Portugal, Netherlands, the United Kingdom, and the United States. Production country for each order is carefully selected by an advanced routing algorithm at the time of ordering. In most cases, products are fulfilled at the closest production center. Sometimes due to reasons such as stock availability, orders may be shipped internationally even if a fulfillment center exists within the same country. Print: The standard process is the Direct to Garment (DTG) method of printing. This is the equivalent to digital printing for paper and it's ideal for printing on-demand on cotton. Disclaimers: Please note that color disparities can arise. As a result, the final appearance of your prints may be influenced by a multitude of distinct factors such as different printers, color profiles, settings, and processes. We want to be transparent and ensure your satisfaction, which is why we cannot promise absolute color precision of 100%. Some of the pictures used in the listing are mockups and are not an exact replica of the garment.

Working with girls and women who have Rett Syndrome can be a unique and wonderful experience. Rett Syndrome is a neurological condition that effects only girls (with a few, rare exceptions). Although it varies in presentation from girl to girl, in general, those with Rett Syndrome are primarily alternative communicators, they present with hand wringing or similar movements and they tend to have amazing eye contact and eye pointing skills. Most of the girls are very motivated by music and music can be an ideal teaching modality. About half use wheelchairs for all mobility. Most have seizures, have swallowing difficulties and have issues with unintentional breath holding. Sleep disorders are common as are certain lung and heart issues. Rett Syndrome used to be considered a form of autism, but it is, in fact, a specific genetic condition. Girls with Rett Syndrome used to be automatically assumed to have very severe to profound developmental and intellectual disabilities. However, as more and more people are willing to practice the least dangerous assumption and presume competence and as technology has evolved to include somewhat affordable eye tracking based alternative communication systems we are finding that many, if not most, girls with Rett Syndrome have been dramatically underestimated and, sometimes, educationally neglected. Here are just a few tips for working with girls and women who have Rett Syndrome in our classrooms and in other educational settings. Bringing the hands to mid-line (the center of the body) is one of the key diagnostic features of Rett Syndrome. This can be hand washing movements, hand clenching, hand mouthing or clapping. The girls cannot control this movement, in fact, an attempt to control this movement may be distressing and thus increase it. Therefore, rethink hand use goals. hand wringing and related stereotypies are a hallmark of Rett Syndrome functional hand use is occasionally possible for some girls with Rett Syndrome, however, as a general rule goals that work towards hand use should be rethought. such goals are likely to be lead to frustration for the girls and for staff. Whatever energy or effort the girls must put forth to meet such goals will be a heroic effort in battling a symptom of Rett Syndrome, it is unfair to ask her to do this while doing other important things - like learning look through your IEP. If any of the goals for communication, life skills or academics call for the girl to use her hands especially using her hands in a very specific way look for other ways to meet the goals. Consider eye gaze from communication, switches with a head or foot movement for activating adapted items and generally adapting the environment to be accessed without hand us it is ok to have her use her hands, to encourage her to use her hands, but having it be the goal may not be best overall some girls do have more hand use than others, a few can hold a cup or spoon or even activate a device, but consider the effort required overall as you decide what to spend energy on Remember what apraxia (a key component of Rett) is: a inability to perform a task, especially speech even though: the request is understood there is willingness to do the task the muscles work properly the task may have already been learned This means you can't assume a Rett girl doesn't understand, is "acting out" or "refusing", is physically incapable or that she has forgotten what she has learned you can assume that the more the girl wants to do or say something the harder it will be and she is inevitably more frustrated than you are the girl with Rett will be consistently inconsistent, not because of intelligence or behavior but because of apraxia a burst of strong emotion may override apraxia Also since you can't measure her knowledge fully because of the combination hand stereoypies and apraxia of speech, even using high technology, you must assume that she is competent to avoid causing an developmental disability through educational neglect Anxiety severely affects girls with Rett Anxiety is a massive issue in Rett Syndrome. The girls are often times unable to communicate their anxiety or ask questions to clarify situations which may be causing anxiety. Anxiety can present as increased stereotypies like tooth grinding, hand mouthing, breath holding and other behaviors; it can also present as shutting down (closing eyes, appearing sleepy) or with crying or yelling. Very rarely, some girls may hit their heads, bite their hands or otherwise hurt themselves. Teachers and therapists should seek to create a low stress, low anxiety enviroment by explaining changes in the environment, in staffing, in anything that can cause stress teaching about emotions and how to communicate about them ensuring the girls have the words to talk about anxiety using social stories to teach about how to decrease anxiety and to prepare the girls for difficult situations be aware of what your students particular anxiety markers are and intervene at the first sign know what music, sensory experiences and people your student finds calming and have them available, give the girl a way to ask for these things Eyes are usually the best means of communication Although a few girls can speak some words and a few others can use their hands or switches to activate augmentative communication devices most girls do best when using eye gaze as a way to communicate Start evaluation for high technology eye gaze communication system early, at diagnosis or between nine months of age and two years, if possible there are no prerequisites for high technology eye gaze based communication, girls do not need to use low technology eye gazed interventions first, they do not have to master PECS or picture symbols first. all of the best practices of Augmentative and Alternative Communication apply to eye gaze such as: implementation of a robust vocabulary, intensive and ongoing aided language stimulation and implementation across all environments Trying a high technology eye gaze system Be sure you work with a company representative and/or AAC specialist who is knowledgeable about both Rett Syndrome and eye gaze tracking technologies, but if there is no one available still proceed with trying high technology eye gaze systems Explain to the girl well ahead of time and more than once what a high technology eye gaze system is and what it is for, show videos of other girls using such devices Schedule the demo and trial of the system for when the girl is usually most alert, for most girls this is the morning Do not have the girl present for the boring set up or "how this works" session with the company representative, do not bring her in until you are ready for her to start using the system! Do NOT waste time trying to calibrate the device when the girl arrives, calibration has no built in rewards and is hard to understand why is it useful from the girls perspective. It tends to cause the girls anxiety. Have the rep turn on a fun sensory activity for the girl to try with her eyes. She will likely "get it" right away. Move from there into a communication activity with a large targets and a big pay off (something exciting happens when the buttons are activated even if that something exciting is you doing what the girl tells you - sing, dance, jump). At this point the girl may be tired. Take her cues. Stop before she has any sense of failure. At the next visit move through the same sequence more quickly and then try calibrating. Rarely after two or three sessions when the girl is awake and feeling well is there then not enough evidence to get a month long trial of a system for further evaluation. Literacy is a human right! Rett Girls can read! start teaching girls with Rett Syndrome letters, letters sounds, letter blending and word segmenting along the same time line as typical peers but, if the girl is older it isn't too late, start now, reading and spelling is being accomplished by girls and women with Rett Syndrome everyday, be a part of this reading revolution and teaching reading and spelling now Music as motivation girls with Rett Syndrome can be very motivated by music and may be more able to learn when music is involved consider music therapy and work to have it consist of more than cause and effect activities and listening to music, many girls are able to contribute to writing lyrics to music using there speech devices and many find music a way to relieve anxiety and express emotions use music and music videos to teach key concepts, you can find a music video for just about any educational concept on YouTube! Connect with resources Rett Syndrome Educators Network RettSyndrome.Org Rett University Rett Syndrome Research Trust GirlPower2Cure Facebook IRSF Communication and Device Exchange

Raise awareness for Rett Syndrome in an effortless and highly effective way, by wearing a t-shirt that's both durable and comfortable. Make their fight your fight, and help draw attention to Rett Syndrome the easy way. We have not only T-shirts, but also hoodies and sweatshirts. We always welcome custom orders, please contact us if you have any questions about the order. PRODUCT DETAILS: On the first picture is a Premium Black Tee - UNISEX TEE: The shirt is made of durable cotton fabric and has a double-stitched bottom hem and sleeves. • Solid colors are 100% ring-spun cotton • Dark Heather is 65% polyester, 35% cotton • Fabric weight: 4.5 oz/y² (153 g/m²) • Pre-shrunk for extra durability • Regular fit We use Gildan 64000 model. - PREMIUM UNISEX TEE: This tee feels soft and lightweight, with the right amount of stretch. It's comfortable and flattering for both men and women. • 100% combed and ring-spun cotton (Heather color is 52% combed and ring-spun cotton, 48% polyester) • Fabric weight: 4.2 oz (142 g/m2) • Shoulder-to-shoulder taping • Side-seamed • Regular fit We use Bella Canvas 3001 model. - UNISEX SWEATSHIRT: The air-jet spun yarn and quarter-turned fabric helps eliminate creases and pilling, while the mix of cotton and polyester creates a soft and comfortable feel. • 50% cotton, 50% polyester • Fabric weight: 8.0 oz/y² (271.25 g/m²) • Pre-shrunk • 1x1 athletic rib-knit collar with spandex • Air-jet spun yarn with a soft feel and reduced pilling • Double-needle stitched collar, shoulders, armholes, cuffs, and hem • Quarter-turned to avoid crease down the middle We use Gildan 18000 model. - HOODIE: With a large front pouch pocket and drawstrings in a matching color, this Unisex Heavy Blend Hoodie is a sure crowd-favorite. It’s soft, stylish, and perfect for cooler evenings. A cozy sweatshirt to curl up in. It is soft, smooth, and stylish. It's also perfect for cooler evenings! • 50% cotton/50% polyester • Reduced pilling and softer air-jet spun yarn • Double-lined hood • 1x1 athletic rib knit cuffs and waistband with spandex • Double-needle stitching throughout • Front pouch pocket We use Gildan 18500 model. - YOUTH TEE: This Youth Staple Tee is light, comfy, and has just the right amount of stretch youngsters need for an active lifestyle. • 100% Airlume combed and ring-spun cotton • Heather colors are 52% combed and ring-spun cotton, 48% polyester • Fabric weight: 4.2 oz/yd² (142 g/m²) • Pre-shrunk fabric • 32 singles • Relaxed unisex fit How To Pay Without PayPal? 1. Select Check out with PayPal and you’ll be redirected to PayPal. Instead of choosing to pay with your PayPal account, select Pay with Debit or Credit Card. 2. You'll be prompted to fill in your billing and credit card information. 3. Enter your email address so PayPal can send you a receipt. 4. Select Continue to return to Etsy. Your payment isn't sent until you select the Submit order on Etsy.

Rett therapy experts and parents from around the world have put together some practical enrichment therapies you can use at home.

Rett syndrome is a kind of Autism spectrum disorder. Though autism prevails in males rett syndrome is observed more in females, know more about its causes, symptoms and treatments.

This classic unisex jersey short sleeve tee fits like a well-loved favorite. Soft cotton and quality print make users fall in love with it over and over again. These t-shirts have-ribbed knit collars to bolster shaping. The shoulders have taping for better fit over time. Dual side seams hold the garment's shape for longer. • 100% Airlume combed and ringspun cotton (fiber content may vary for different colors) • Light fabric (4.2 oz/yd² (142 g/m²)) • Retail fit • Tear away label • Runs true to size • Printed in USA ** Visit this link to check out the rest of our products in this product section: https://www.etsy.com/shop/JWcrafter?search_query=rett+syndrome **

Difficulties with communication have a profound impact on the lives of individuals with Rett syndrome and their caregivers. Globally, many families report difficulty accessing appropriate and timel...

Infographie syndrome de rett