Tag Archives: occupational therapy

Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!

 

The Joint Smart Child.inddThe JointSmart Child series started off in 2019 with Volume One:  The Early Years.  It is finally time for the school-age child to have their needs addressed!

Volume Two:  The School Years is available now on Amazon as an e-book, filled with information to make life at home and at school easier and safer.  This book is equally at home on a parent’s or a pediatric therapist’s shelf.   Filled with clear explanations for the daily struggles hypermobile children encounter, it answers the need for a practical reference guide for daily living.

Section I reviews the basics:  understanding the many ways that hypermobility can affect motor, sensory and social/emotional development.  General principles for positioning and safety are presented in easy-to-follow language.

Section II addresses daily living skills such as dressing, bathing and mealtime.  School-age kids may not be fully independent in these areas, and they need targeted strategies to improve their skills while boosting their confidence.

Section III looks at school and recreational activities.  It covers handwriting and keyboarding, playing sports and playing musical instruments with less fatigue, less pain, and more control.  When parents and therapists know how to select the best equipment and use optimal ergonomics and safety guidelines, kids with hypermobility really can thrive!

Section IV reviews the communication skills in Volume One, and then expands them to address the more complex relationships within and outside the family.  Older children can have more complex medical needs such as pain management, and knowing how to communicate with medical professionals empowers parents.

The extensive appendix provides informational forms for parents to use with babysitters and teachers, and checklists for chairs and sports equipment such as bikes.  There is a checklist parents can use during IEP meetings to ensure that their child’s goals include issues such as optimal positioning, access, and endurance in school.  Therapists can use the same materials as part of their home program or in professional presentations to parent groups.  There are even simple recipes to use cooking as a fun activity that develops sensory and motor skills!

I believe that this e-book has so much to offer parents and therapists that have been looking for practical information, but find they have to search around the internet only to rely on other parents for guidance instead of health care professionals.  This is the book that answers so many of their questions and empowers children to reach their highest potential!

for more information on how to help your hypermobile child, read Need a Desk Chair for Your Hypermobile School-Age Child? Check out the Giantex Chair and Should Hypermobile Kids Sit On Therapy Balls For Schoolwork? plus Should Hypermobile Kids Use Backpacks?

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Need a Desk Chair for Your Hypermobile School-Age Child? Check out the Giantex Chair

 

71ASiKXBSJL._AC_SL1200_.jpgOne of my colleagues with a hypermobile third-grader told me this chair has been a great chair at school for her child.  It hits a lot of my targets for a chair recommendation, so here it is:  The Giantex chair.

Why do I like it so much?

  • It is a bit adaptable and sized for kids.  No chair fits every child, but the more you can adjust a chair, the more likely you are to provide good supportive seating.  This chair is a good balance of adaptability and affordability.  My readers know I am not a fan of therapy balls as seating for homework.  Here’s why: Should Hypermobile Kids Sit On Therapy Balls For Schoolwork?
  • It isn’t institutional.  Teachers, parents, and especially kids, get turned off by chairs that look like medical equipment.  This looks like a regular chair, but when adjusted correctly, it IS medical equipment, IMPO.
  • It’s affordable.  The child I described got it paid for by her school district to use in her classroom, but this chair is within the budget of some families.  They can have one at home for homework or meals.  Most kids aren’t too eager to use a Tripp Trapp chair after 6 or 7.  It’s untraditional looks bother them.  This chair isn’t going to turn them off as easily.
  • This chair looks like it would last through some growth.  I tell every parent that they only thing I can promise you is that your child will grow.  Even the kids with genetic disorders that affect growth will grow larger eventually.  This chair should fit kids from 8-12 years of age in most cases.  The really small ones or the really tall ones?  Maybe not, but the small ones will grow into it, and the tall kids probably fit into a smaller adult chair now or in the near future.

For more helpful posts on hypermobile kids, read Joint Protection And Hypermobility: Investing in Your Child’s FutureHow To Correctly Reposition Your Child’s Legs When They “W-Sit” and When Writing Hurts: The Hypermobile Hand.

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How Dr. Harvey Karp Helps Kids AND Adults with Regulation Issues

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Can you do DBT with toddlers?  Well, Marsha Linehan probably would say no, but the Fast Food Rule and Patience Stretching come as close as you ever could!

Many child psychologists and psychotherapists are focusing on attachment theory and the problems of poor emotional regulation in children.  The rise of self-harm behaviors in teens and aggression in children as young as 3 can be related to difficulties handling emotions and experiences that increase arousal levels but never get resolved.

Not every child who throws their book down in frustration or slams their bedroom door needs to see a therapist.  But I do wonder how many of those teens that cut themselves, starve themselves or get suspended for putting their hands on a teacher or fellow student, actually needed Dr. Karp’s techniques when they were 3 or 4.  Maybe, just maybe, if they had been helped with Patience Stretching when they wanted that toy, or if someone had used the Fast Food Rule with them when they had a tantrum Use The Fast Food Rule For Better Attunement With Your Child, maybe they would be in better shape at 13.

Why?

Because these techniques don’t just work on the child.  They work on the adult using them as well.  And adults who can self-regulate raise kids who learn to do it too.

When I use Patience Stretching( Stretch Your Toddler’s Patience, Starting Today! ) with a toddler that wants one toy while I want them to work a bit longer on a therapy task, I am actually receiving the benefits of the technique as well.  I am both teaching and experiencing the reduction in frustration and the decrease in agitation as this strategy calms down the whole situation.  Oxytocin gets released when we calm down with a child, and adults need that hit as much as children do.  If we “go there” with an agitated child, we feel worse, even if we think we won because we have the power to deny or punish.  It doesn’t feel good to do either, but it also doesn’t feel good to give into a screaming child.  Not really.  Even the most permissive adult will say no to something dangerous, and then the child who is unfamiliar with hearing “no” will really explode.

The good news is that you don’t have to get an advanced degree to use Dr. Karp’s strategies.  You have to practice them so that your delivery is flexible and confident, but anyone can do it, not just therapists.  In fact, if these techniques don’t work well once you improve your delivery, that could be one way to decide that you need to consult a child specialist.

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Are You a Trauma Survivor AND the Parent of a Special Needs Child?

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First, let me say that trauma survivors can be among the most loving and active parents I work with as a pediatric occupational therapist.

How do I know they are survivors?  Some parents share their histories openly, and some aren’t aware of what their actions and words reveal.  Occupational therapists that have worked in psychiatry are particularly attuned to patterns of behavior that suggest a history of trauma.  And after therapy has gone on for a while and the therapeutic relationship blossoms, some parents wish to share more of their personal story with me.

Trauma survivors that had complicated pregnancies Can The Parents of Pediatric Clients Have PTSD? , have children with genetic disorders, or deliver children who develop developmental delays, come in all ages and social/support situations.  Some currently have a psychotherapist for support, and some have done a tremendous amount of therapy in the past.  Others may not even recognize that what they experienced in the past was traumatic, or that there is specialized help for trauma-related issues.

What they all have in common is the (mostly) sudden stressor of having a child with special needs, the seemingly endless daily demands of care, and the constant seeking/managing of medical, educational and therapy services.  Survivors of trauma may not realize that they aren’t alone with their feelings of distress, or that their child’s therapists can help them cope.

I wrote a post on how therapists can help a child’s siblings, How an Occupational Therapist Can Help The Siblings of Special Needs Children , but parents with trauma backgrounds can ask for and receive support from their child’s therapists as well:

The simplest way therapists can help you is to validate the real demands of care and give you some perspective on what other family’s lives are really like.  We are aware that we are asking parents to do home programs and obtain equipment and toys that facilitate development.  We also know that life is messy, and it is OK if you admit that you find it hard just getting through the day.  You can ask us if other parents go through the same things that you do, and you will find out that you might be doing more than we expect.

If you are having a rough period, ask us to give you just the ONE thing that would be the easiest to incorporate into your day that would help your child this week.  We won’t be offended.  You might be surprised to find that we know what those days/weeks/months feel like too.

Some parents who are trauma survivors are less likely to ask for a review or clarification of a technique or treatment when therapists give them instructions.  This can come from fearing criticism, having been taught not to question authorities, feeling judged by therapists they perceive as punitive authorities, and even being dissociative during their child’s therapy session.  “Spacing out”, forgetting, being confused, etc. are all possible dissociative responses.  Parents who are reliving a NICU nightmare or who are triggered and recall their own medical trauma or physical abuse may have a lot of difficulty learning to do treatments on their child that involve any level of restraint or distress.  This can be managed, but only if it is addressed.

Your child’s therapists have many different ways of holding and positioning a child, and different ways of administering a treatment technique.  You can express your discomfort in general terms or you can tell us that this is a trigger for you, and you can ask us to make things easier for you without having to tell your own story.  Asking for a few reviews of home programs is seen by most therapists as indicating interest in what we do.  We aren’t offended; we are flattered.

Some parents need to be out of the treatment room during a session for their own comfort, and that is also OK.  We like to share your child’s progress, and we welcome you into the session, but we understand if you need to have some distance.  Scheduling treatment at your child’s school or in a therapy center, rather than at home, may be easier for you.  Your child will still receive excellent treatment.

Trauma survivors can be extremely distressed when their child cries in therapy, or even while witnessing their child struggle to learn new skills.  This can bring up distressing childhood memories for them, some of which they may not fully recall or even connect with their responses to their child’s therapy session.

Therapists can be healing models for actively managing a child’s distress and expressing how they handle their own feelings when children struggle.  A parent that grew up in a punitive home may not have seen adults model healthy reactions to a child’s distress.

Therapists can teach you their techniques for grading challenge and providing support that reduces your child’s level of agitation.  My favorite book to learn how to respond to young children warmly but with limits is The Happiest Toddler on the Block by Dr. Harvey Karp.  His techniques support healthy attachment and children respond much more quickly than parents expect.  Everyone feels better, not just the kids!  Read Teaching Children Emotional Regulation: Can Happiest Toddler on the Block Help Kids AND Adults? for more on this amazing program and how it can help both of you.  Today.

Some of the OT treatments that help children also can help their parents with regulation issues and/or trauma histories.  Read Should the PARENTS of Kids With Sensory Issues Use Quickshifts?  and Stress Relief in the Time of Coronavirus: Enter Quickshifts about one easy treatment to develop a wider window of tolerance that works well for both children and adults.

UPDATE:  I was a speaker at the Healing Together conference in Orlando FL this month (Feb.2020). It was an amazing gathering for adults with dissociative disorders, their loved one/supporters and clinicians.  I highly recommend this conference to parents who are trauma survivors that struggle with dissociation.

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How an Occupational Therapist Can Help The Siblings of Special Needs Children

 

joao-rafael-662575-unsplashThe parent of one of my clients recently returned from a conference related to her youngest child’s genetic disorder, and she told me that the presentation on helping the siblings of special needs kids really only offered one niblet of advice: “Try to give each sibling 10 minutes a day of “just us” time.”

My shoulders, and my heart, fell.  Telling exhausted and worried parents that they need to find more time in their day, every day, isn’t fair.  This mom could have used so many more specific strategies.  She didn’t need another way to feel inadequate to the challenge.  When you have a special needs child, you don’t have extra time.  Some days you aren’t sure you will be able to shower and shampoo.  Even if you could carve out some time by delegating and hiring help, the truth is that living with constant worry about the present and the future, running chronically short on sleep, and perhaps still recovering from a NICU nightmare…this doesn’t lend itself to stellar time management.

There are things that really do help.  Among them are getting the right kind of assistance and support, sharing the knowledge you receive from specialists, and handling everybody’s feelings with compassion (including self-compassion) and honesty.    Occupational therapists are out there helping families deal with life, since we have a solid background in the science of occupational demands and the psychological responses to illness, injury and trauma.  We aren’t psychotherapists, but we study the science of healthy life routines and behaviors.  We also spend a lot of time learning what special needs kids need to thrive, and this includes supporting the siblings and parents of our clients.

Here are some of the things I wish that the presenters had suggested:

  1. Ask your child’s therapists to train more of your family members and caregivers.  This means the partner that isn’t the primary caregiver for a special needs child, but it also could be the grandparent or the babysitter that is the backup emergency caregiver.  There are parents who feel they can never take a break because a half-spa day would mean that no one knows how to prevent their child from falling down the steps or how to know when a child is going in the direction of a meltdown that will derail the day.  If you have a medically fragile child, more people need to know how to keep them safe and healthy.  Your child’s therapists are skilled in providing training in their area of specialization.  They may not offer it to your other family  members unless you ask for it to be done.  This is an investment in your peace of mind.  Make it happen.
  2. Find out if your child’s siblings can enter a therapy session and learn more about how to help or encourage their special needs sibling.  Therapists can teach your child’s siblings, and because they are seen as authorities and not parents, this can work well to foster understanding and interest.  Even preschool kids can learn why the baby isn’t playing with them( but she is watching) and that means “I like you”.  Your therapists are pediatric specialists and are good at helping children of all ages, even if your social needs child is an infant.
  3. Learn methods to spread your warmth and concern without promising time commitments you may not be able to keep.  Something so simple (and explained in more detail in my new book below) is to talk with your child’s siblings about your feelings of anticipation before some fun event, even if it is reading a chapter in Harry Potter.  Telling them, days ahead, that you can’t wait to be with them can feel so good.  Later, you can remind them how much fun you had.  Don’t require them to reciprocate.  You are speaking about your feelings, and if they brush it off then don’t take it personally.  Tweens especially struggle with how to respond.  They still need to hear your warmth.
  4. Express your frustrations honestly, but mindfully, to your child’s siblings.  You will both feel better for it.  You don’t have to wail and keen, and in fact I would discourage that.  You can do that with your partner or your counselor.  But your other children need to know that feeling less than blissfully grateful for their special needs sibling is normal and not shameful.  When some feelings are perceived as unacceptable, they grow in importance and sprout little behavioral problems of their own.  Start by speaking about how tired you are.  It is honest and it is probably already visible.  Mention that you feel both things; love and frustration.  You have to adjust for your other children’s age and emotional tolerance, but I promise you:  this is going to really help.
  5. Ask for help.  And accept it when it is offered.  Some people don’t think they need help, and some don’t think they deserve it.  Some think that it will be seen as weakness or laziness.  Some ask for help and get a casserole instead of babysitting.  Some get advice instead of a casserole.  And some turn down help to avoid feeling as tired and frightened as they really feel deep inside.  Think carefully about how and why you don’t have or accept help, and try doing what doesn’t feel natural or easy.  It could be the best move you make this week.
  6. Reconsider the amount of therapy and tutoring you are doing.  I know; what therapist thinks you can overdo their own treatment?  Me.  Overscheduling therapies can backfire when you, your special needs child, and the rest of your family suffer from the demands.  The time demands, the loss of participation in real life fun like hayrides and playgrounds, etc.  The downtime that any normal person needs and so few parents and special needs kids get.  That affects siblings too, in lost time with parents and exhausted parents trying to wedge “me time” into a free moment.
  7. Make choices about what your priorities are, but allow yourself to have a priority that is not all about your child.  For example, you may have to accept that your house isn’t going to be spotless, and that you may be buying rather than making most of the holiday cookies.  But if making a few batches of a precious family recipe (my best friend from college always makes her Scottish grandmother’s recipe for fruit squares) will make you feel like a million bucks, then go ahead.  Yes, life with a special needs child is different from what you expected.  But you get to have some things from your previous life that bring joy!

I am so excited to report that my newest e-book is finally done!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is designed to empower the parents of hypermobile kids ages 0-5.  There are chapters on picking the right high chair, toys, even pajamas!  One section is just on improving communication with your family (including siblings), teachers, therapists and even doctors.  No other book answers questions that parents have about finding good eating utensils and how to navigate playdates and social events more successfully.

It is available on Amazon as a read-only download and on Your Therapy Source as a printable and click-able download.  Look for more information and a sneak peek at the ways every parent can learn what therapists know about positioning here:The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

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Binaural Beats and Regulation: More Than Music Therapy

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When you have so much to choose from, how do you pick the right one?

For people who have read about or tried Quickshifts  Quickshifts: A Simple, Successful, and Easy to Use Treatment For Processing, Attention and Postural Activation, you may be wondering what all the fuss is about listening on headphones versus speakers, and why the music has that echo-y tone.

The use of binaural headphones or speakers placed close to the child allows the ears to hear the full range of sound with as little interference or absorption from the environment.  It is important that the left and right ear are hearing the sounds separately.  The echo-y sound?  What you are hearing is the BBT; binaural beat technology.  The slight alteration in sound frequency between what the brain hears from the left and right speakers forces it to synch up at a frequency that matches to level of difference.

It isn’t new.  BBT has been used and researched since the 70’s.  It is out there in many forms; you can even find it on YouTube.  There are enough studies done to prove that this technology has real effects on alertness, attention and mood.  It makes sense that therapists would like to use it to help kids with self-regulation issues.  BBT is helpful for learning and self-regulation, but only if you know what brainwave state you want, and why you want it.  And that is where skilled therapists can help.

But which one to use?

 I only use Quickshifts in my therapy sessions.

 

Why do I prefer Quickshifts to deliver BBT?

  • Quickshifts entrain an alpha brainwave state.  This state is associated with calm focus the ability to move to a more powerful focus or downshift into sleep, and, wait for it, interoception.  Yup, the biggest new word in occupational therapy is interoception, and there are some excellent studies done by neuropsych researchers that indicate that alpha brainwave states increase interoception.  Yeah!  Interoception is the ability to perceive internal states, and this includes basic physiological states such as fatigue, hunger, and the need to eliminate.  So many of our clients struggle with knowing what they feel.  Quickshifts can help.
  • Alpha brainwave states are theorized to act as a gating mechanism for anxiety, which means they help kids block anxiety.  Anxiety isn’t a great state for kids with ASD, SPD, or any of us.  Anxiety is a component of so many diagnoses, and it isn’t easy to do cognitive behavioral strategies like CBT or DBT with children under 10 or 11.  Quickshifts also work well for adults with anxiety as well! Should the PARENTS of Kids With Sensory Issues Use Quickshifts?
  • The music used in Quickshifts is very carefully designed to enhance specific functional states, and every occupational therapist is all about functional performance.  We don’t want just relaxation; we want engagement in life.  The way that Quickshifts uses music allows BBT to address specific behavioral performance abilities.  There are albums for attention, for movement, and for regulation.  They all use BBT.  For each particular album, one functional goal will predominate.  I don’t need to induce a meditative state in a child that is working on handwriting.  I need calm focus and better movement control.
  • The avoidance of pure tones means I don’t have to worry about seizure activity in kids with a seizure disorder.  The use of pure tones is a risk for seizures, so if a child has frequent seizures, I can be confident that I am not increasing them with this treatment.
  • The choice of instrumentation on Quickshifts albums is often more grounding than other BBT choices.  I want kids to feel grounded, not floating on a cloud.  That state makes it harder to pay attention, to speak, move, etc.  Being jolted into a high level of engagement without grounding isn’t great either.  Remember:  OT is all about functioning.  This happens at that “just right” point of arousal.
  • There is a progression of instrumentation and rhythm on many Quickshift albums that guides the brain into more environmental awareness and postural activation, but it is done gently.   Getting to an alpha state is a goal, but improving functional performance with less risk of overload is most important to me.  I have to give kids the ability to leave our session in a great state of mind.
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He picked out his perfect pumpkin!

The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

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My first e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, was a wonderful experience to write and share.  The number of daily hits on one of my most popular blog posts  Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children helped me figure out what my next e-book topic should be.

Hypermobility is a symptom that affects almost every aspect of a family’s life.  Unlike autism or cerebral palsy, online resources for parents are so limited and generic that it was obvious that what was needed was solid practical information using everyday language.  Being empowered starts with knowledge and confidence.

The result?  My new e-book:  The JointSmart Child:  Living and Thriving With Hypermobility.  Volume One:  The Early Years.

What makes this book unique?

  • This manual explains how and why joint instability creates challenges in the simplest tasks of everyday life.
  • The sensory and behavioral consequences of hypermobility aren’t ignored; they are fully examined, and strategies to manage them are discussed in detail.
  • Busy parents can quickly spot the chapter that answers their questions by reading the short summaries at the beginning and end of each chapter.
  • This book emphasizes practical solutions over theories and medical jargon.
  • Parents learn how to create greater safety at home and in the community.
  • The appendices are forms that parents can use to improve communication with babysitters, family, teachers and doctors.

Who should read this book?

  1. Parents of hypermobile children ages 0-6, or children functioning in this developmental range.
  2. Therapists looking for new ideas for treatment or home programs.
  3. New therapists, or therapists who are entering pediatrics from another area of practice.
  4. Special educators, and educators that have hypermobile children mainstreamed into their classroom.

Looking for a preview?  Here is a sample from Chapter Three:  Positioning and Seating:

Some Basic Principles of Positioning:

Therapists learn the basics of positioning in school, and take advanced certification courses to be able to evaluate and prescribe equipment for their clients.  Parents can learn the basics too, and I feel strongly that it is essential to impart at least some of this information to every caregiver I meet.  A child’s therapists can help parents learn to use the equipment they have and help them select new equipment for their home.  The following principle are the easiest and most important principles of positioning for parents to learn:

  • The simplest rule I teach is “If it looks bad, it probably IS bad.”  Even without knowing the principles of positioning, or knowing what to do to fix things, parents can see that their child looks awkward or unsteady.  Once they recognize that their child isn’t in a stable or aligned position, they can try to improve the situation.  If they don’t know what to do, they can ask their child’s therapist for their professional advice.
  • The visual target is to achieve symmetrical alignment: a position in which a straight line is drawn through the center of a child”s face, down thorough the center of their chest and through the center of their pelvis.  Another visual target is to see that the natural curves of the spine (based on age) are supported.  Children will move out of alignment of course, but they should start form this symmetrical position.  Good movements occurs around this centered position.
  • Good positioning allows a child a balance of support and mobility.  Adults need to provide enough support, but also want to allow as much independent movement as possible.
  • The beginning of positioning is to achieve a stable pelvis.  Without a stable pelvis, stability at the feet, shoulders and head will be more difficult to achieve.  This can be accomplished by a combination of a waist or seatbelt, a cushion, and placing a child’s feet flat on a stable surface.
  • Anticipate the effects of activity and fatigue on positioning.  A child’s posture will shift as they move around in a chair, and this will make it harder for them to maintain a stable position.
  • Once a child is positioned as well as possible, monitor and adjust their position as needed.  Children aren’t crockpots; it isn’t possible to “set it and forget it.”  A child that is leaning too far to the side or too far forward, or whose hips have slid forward toward the front of the seat, isn’t necessarily tired.  They may simple need repositioning.
  • Equipment needs can change over time, even if a child is in a therapeutic seating system.  Children row physically and develop new skills that create new positioning needs.  If a child is unable to achieve a reasonable level of postural stability, they may need adjustments or new equipment.  This isn’t a failure; positioning hypermobile children is a fluid experience.

The JointSmart Child:  Living and Thriving With Hypermobility  Volume One:  The Early Years is now available as a read-only download on Amazon.com

And also as a click-through and printable download  on Your Therapy Source!  

NEW:  Your Therapy Source is selling my new book along with The Practical Guide to Toilet Training Your Child With Low Muscle Tone as a bundle, saving you money and giving you a complete resource for the early years!

Already bought the book?  Please share your comments and suggestions for the next two books!  Volume Two is coming out in spring 2020, and will address the challenges of raising the school-aged child, and Volume Three focuses on the tween, teen, and young adult with hypermobility!

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