Up; New Success for Young Children with Physical Disabilities and/or Multiple Challenges Gayle Wiens, PT, Assistive Technology Specialist Copyright 2014 Questions or Comments? ADAPT ShopA Program of Southwest Human Development Who can access ADAPT Shop? • Arizona Children with DDD or DDD and Long Term Care • Maricopa County-initial home visit • Families from other counties in Arizona are seen at ADAPT Shop • Families contact their DDD SC to request ADAPT Shop Services • Contact Tina Martin, Senior Program Manager for Assistive Technology 602633-8686 with new referrals or for appointments. Assistive Technology For early SUCCESS! ADAPT Shop helps with Assistive Technology: • Sitting supports and custom adaptations • Help with beginning play and beginning to use hands. Also, switches when needed • Beginning communication strategies for complex children • Trials with various powered mobility; Go Baby Go, Our Multiple Switch Scooter, Power or Power Assist W\C • Help identifying appropriate iPad apps • Help identifying helpful medical equipment, including standing and moving for very weak children, and recommendations for orthotics that might be helpful ADAPT Shop Model Search for unrealized potential Look for the child’s strengths Discover the child’s interests to build meaningful activities Find out what is meaningful to each child and their family and use it to plan your intervention. Ideas for Finding Meaningful Tasks Use things any child would like: • Increased participation in play with someone they love/like e.g. using Step by Step to direct the play and make comments. At school, kids want to play with other kids. At home, play with family members. • Going outside This is a big one! Position them near an open door. • Being in charge of the activity e.g. using an iPad app that is interactive and that they do themselves. Telling other people what to do. • Making choices among things they usually don’t have access to e.g. things from the kitchen for pretend cooking, choice of their brother’s Hot Wheels cars, choices of family members, clothing and accessories to try on and look in the mirror. This is GREAT for vocabulary development and FUN. • Anything mega fun! These kids are putting out a huge amount of effort so activities need to be extra fun to be worth it! e.g. squirting your brother with a switch operated water squirter, yelling out (on device) DANCE PARTY and kids start dancing, turning the music on and off for the Dance Party. ADAPT intervention often starts with custom seating Flailing, constant movement Child only tolerated sitting anywhere for 5 min max; wheelchair, Child Life, therapy chairs so 95% day laying on floor. 5 minutes later in his new chair, Notice the visual focus on iPad What’s a Happy Chair? I like it! A Happy Chair is a custom designed and constructed chair made of foam and plastic. Some look similar Some look quite different Blocks illustration for sitting AND Standing Simulating pelvic tilt in sitting or unstable, pronated foot in standing The Solutions: • The custom contour seat stabilizes the bottom block (pelvis) for sitting and the back of the chair helps them to align their spine. Then, they can balance their head on top. You know you have achieved alignment when you see intermittent chin tucks. • Similarly, Cascade Orthotics stabilize foot (bottom block) for standing. What happens in the commercial chairs we use ? • Unless the chair includes support directly at the sacrum, a ramp that lifts the femur at the end of the knee that holds the legs in line with the hips, and lateral leg support to keep them aligned with the hips, the child’s bottom slides forward. You see this all the time, when someone “pulls up” the child in his chair it is because the bottom slid forward. • The only thing I know that really works for this problem is the custom contoured seat. • Commercial contour seating often fails to provide support at the sacrum, and sometimes fails to keep the legs aligned with the hips. The ramp that is needed near the knee gets broken down with use and sometimes slopes down instead of up. 350 Happy Chairs later….. I’ve learned that normal alignment leads to normal development. Sitting but poor functioning, pelvis unstable so many compensations. Seating for Prevention! • Begin supported sitting at 5 months. Gets them off their head! Less torticollis and plagiocephaly. • Can provide positioning before 5 months if needed. NICU grads and infants are welcome if there is a need. (must have DDD) • Good supportive seating can prevent the development of scoliosis. If a child is hanging to the same side, tilting the head to the same side, let’s intervene before the problem occurs! • Bumbos are not the answer for kids with significant muscle tone differences. Infant with Down Syndrome age 4 months. See kyphosis already 3 months later- child sitting alone, pelvis stable with sacrum at 90, kyphosis completely resolved. Why not just use commercial equipment? • Young children with significant neuromotor delays aren’t very successful with commercial equipment, which is designed to fit an age or size RANGE and strap the child in so they don’t fall out. • We want more than just safety, we want normal alignment (for comfort and health) and for the child to be able to function. • The more severe the physical challenge, the more perfect the chair has to fit for the child to be able to function. Seating to make functioning possible ADAPT Shop is about ……increasing quality of life for children and their families. Unstable pelvis, couldn’t stay in umbrella stroller, takes 2 hands to hold in sit. Constant movement. 3 months later; sitting to play, vision better Who needs a Happy Chair? Kids with high tone Kids with low tone Kids with poor pelvic stability or fluctuating tone Children laying on the floor or tilted back in wheelchairs. They need seating too! But they have nice tilt in space wheelchairs…. • The Lazy Boy effect; How well do you pay attention when fully supported and leaned back? • Tilt in space is good for the bus or a nap! I’ve learned that almost all children want to be upright after about 6-8 months old. Upright doesn’t just mean sitting! • As the children started to get stronger from sitting in their Happy Chairs, I noticed that the contour seat held them in the correct position to stand if their trunk was moved forward (nose over toes). • I talked to the children first and asked them if they wanted to stand up. Boy, did they! • The look on their face is priceless! They are so proud and happy! I’m so sorry I don’t have photos of this facial expression because my hands are busy helping them stand. Remember when your young child did something for the first time? That look of joy is unmistakable. Standing for kids in wheelchairs All by myself! Standing, even if your hands don’t know what to do yet. Helping with Standing-Orthotics For low toned feet 1st AFO’s for standing 2nd articulated AFO for stepping For children with increased tone or moderate to severe physical challenge Kids like standing Standing is exciting Standing?? Our therapist says they aren’t ready for standing yet. • Yep! Children that roll in the door, tilted back in their wheelchairs, head falling off the headrest, yes, those children. • But, they don’t even have good head control! Standing with good support makes it easier to hold your head, not more difficult. • More than 80% of the children that I use the stand up bar with, pull to stand the first time we try it. • Almost all the children enjoy standing in the KidWalk and the majority take some steps. • My first goal for them is standing for transfers but if a child keeps progressing, we help them keep moving! What is standing good for? Benefits from using the stand up bar include: • Significantly improved core strength in neck and trunk • Grip begins to happen and they are more successful with toys • Longitudinal arch of the hand starts to develop • Shoulders relax and muscles elongate, improving functional reaching • Attention span increases because if they space off, they start to fall. • New visual perspective on their environment leads to better use of visual skills Kids like moving too! • This is the KidWalk, it works nicely for children that need a lot of support. It is unique among gait trainers because it allows the hips and seat to move to the side to unweight a foot for stepping and allows a little movement up and down to prevent locking of knees and to reduce spasticity. It holds them in good alignment and I see less sitting. I use it as a dynamic stander (child can stand and play in it) and as well as a gait trainer. Children find it very comfortable and like being able to move and experimenting while feeling safe. Child’s posture before Child’s posture after Standing but not Standers • The standing we do is DYNAMIC. It involves moving and using their own power to stand or move. • The skill I want to teach with standing is weight shift to one side so they can pick up a foot to take a step. This means moving and asymmetry. • Standers lock kids into standing symmetry and the straps do all the work below the chest. They couldn’t move a leg if they wanted to. This teaches kids that they can lock their body or collapse but not how to shift weight and step. • Standers are appropriate for children with paralysis, for most other children, there are better options. Mommy and Me The Purpose of Happy Chairs: Getting Stronger Increasing Function Better Quality of Life Red Rocket Scooter-up to 4 directional switches Purpose of use of Red Rocket • 1) Give movement experiences to children that have not had success with moving in an upright posture • Allow the children to learn by making mistakes, as all children learn as they begin to move. E.g. crawling children bang their head repeatedly on a coffee table before they finally learn to duck. • Move at a slow enough speed that they can work on visually processing WHILE they are moving. Purpose of Red Rocket cont. • Help the child visually and cognitively begin to anticipate obstacles and use problem solving skills to figure out how to avoid them. • Allow the child to begin to explore their environment and all the sensory motor experiences that come with it. • Increasingly, speech therapists and assistive technology specialists tell us movement comes before communication. As the child moves themselves, communication is stimulated. They have something to talk about! • As the child is able to move themselves, steer themselves and solve problems, others begin to see the child’s true abilities and potential. • Humans are more likely to talk to someone who is moving. Social Scripts for Young Children by Dr. Caroline Musselwhite • Our first workshop by Dr. Caroline Musselwhite was a huge success! We are encouraging families to use a Step by Step with Levels to help their child interact with their siblings, friends and families. I often share Caroline’s handout about how to make a social script with a child that can be recorded onto the Step by Step and used by the child for interaction. Remember-the child MUST choose the messages or else it will not be their voice and their self expression. Sometimes I help them create a first script about something meaningful to the child such as a script to interact with a sibling when they arrive home from school. Switch toys, Other Resources • We have a limited number of switches and battery interrupters available for ADAPT Shop clients. • Various other beginning level aug comm. options are also available for ADAPT Shop clients. • We can help families find appropriate iPad apps to use with their child • Sometimes we arrange for trial equipment when it is particularly needed. We believe in, “try before you buy” as much as possible. Referrals? 602-633-8686 Tina Martin, Senior Manager for AT Under 3 years old: • Team needs to determine that the child has a need that the team feels they cannot meet without outside resources. • Child needs a relevant goal on the IFSP. For example, child will sit and play with support or explore possible switches for active play with toys or explore some beginning aug comm activities. • Service Coordinator gives us permission to proceed • Simple, one page referral form • We try to schedule to visit with one or more team members Referrals- 3+ • Service Coordinator adds 12 hours of PT for the ADAPT consultations. This is IN ADDITION to any ongoing therapy and will not interfere with ongoing therapy. • Same simple, one page referral form • We try to schedule to include the child’s ongoing therapist whenever possible. Questions?