Practice makes perfect
Everyday, Colin practices with his caregiver, Angela Pichinte, to attain standing skills. The practice occurs in his daily workouts with his Pacer gait trainer. The practice occurs every time he uses his Rifton stander.The practice occurs when he is helped out of his Bug chair -where he sits for meals and activities-where he has been taught to bear weight as he is lifted to a standing position. They continually work on torso and head control and Angela still has to remind Colin with a “head up, Colin”. Colin has been practicing a long time to master the complex motor skills and strength development that must slowly build so he can have success in standing. He is now able to bear weight on his legs without having them crumple beneath him. Now standing with assistance but standing alone not far off. Yay, Colin!
Halloween Costume Ideas
The Bridge School, located in Hillsborough, California has put together some great ideas for Halloween costumes for special needs kids, especially ones in wheelchairs. Betsy, Clay’s Mom who we understand is the costume creator supreme every year has compiled her ideas along with contributions - instructions, materials needed - from other Bridge School parents to create a “how-to”manual. It is a chance to let your “little ghost or goblin” share Halloween fun with friends and family as never before.
Check out special Halloween costume ideas from the Bridge School.
Colin learns to communicate
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In this photo, Alisha places a switch at the right side of Colin’s head, far enough away to ignore his involuntary head/body movements.
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Creating a story about Humpty Dumpty, Colin, uses his head movement to make his choice between a “green boat” or a “motorcycle.” Colin makes his choice by listening to the auditory prompts provided by the Nursery Rhymes software and looking at the computer. He chooses the fast motorcycle for Humpty to drive.
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In this image, Colin is listening to “Rad Sounds” an RJ Cooper software program and responding to prompts on his Mac computer - he was so excited! Now to activate the switch…
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He did it! Yay! Colin gets his body to move! He moves his head to his right to activate the switch and makes contact! Good Job Colin!
Update from Alisha, Sep 24, 2010 ...”I also wanted to address the hand vs. head question you had. It is very important to establish multiple switch sites so Colin can eventually sustain a whole day of communicating and participating. At this time, his head movement is his most accurate movement but we continue to work on both positions. In one video I have a switch at both his hand and his head so he can choose which one he wants to use. He used his head 90% of the time but he did use his hand 1 time independently. In order to get Colin more independent and making choices that include wrong answers; we have to get his rhythm and timing down. The cause and effect software is perfect for boosting his confidence, practice with his switch and he has total control over something.”
Thank you, Alisha, for your help in putting together this post on Augmentative Alternative Communication. You are making a difference not only in Colin’s World but on Special Kids Place.
Flash cards are fun!
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Colin likes to use the “Look at Me” Mirror Discovery Cards that Teacher Patty brought today. The mirrored flash cards allow Colin to watch and see himself, and they provide a way for him to learn how people and animals communicate. It’s fun to hear Teacher Patty make the animal sounds, and she always tries to engage Colin to imitate them.
In addition, Colin continues to work on his fine motor skills by learning to hold the flash cards.
The Baby Einstein "Look at Me" Mirror Discovery Cards include 19 disc cards.
Exploring textures and shapes is fun
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Today, Colin’s occupational therapist, Rebecca Anderson from Los Angeles Unified School District, worked on tasks that would provide a meaningful sensory experience for Colin.
The lesson took place in the eating area adjacent to the kitchen. Colin was sitting in his new Ormesa Bug seating system, which continues to add to the success of each of Colin’s daily activities...from eating to learning to playing or just hanging out.
Becky brought various types of materials to put into the sensory bin – a plastic shoebox - that she planned to use. However, the sides of the bin were too tall for Colin to easily reach inside and touch the materials. Angela Pichinte, Colin’s caregiver, brought out what she usually uses for the sensory bin, a baking tray; and the size and shape was perfect for the lesson. Becky tempted Colin with various sizes of birdseed that he could feel with his fingers, plastic golf balls that he could roll and hold and small toys that could easily fit into his hand.
Colin likes to feel different textures and looks forward to his daily sensory adventure.
Light, Sight, Action...
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Today Colin and Julia Russo, teacher of the visually impaired, from Los Angeles Unified School District, worked with the American Printing House for the Blind (APH) Light Box #2. Colin sat in his new Bug Seating System. The Bug, made by Ormesa, was perfect for the fine motor activity that the lesson required and made a real difference in how Colin performed. With the vest attachment in place, Colin was able to have upper trunk support, thereby allowing him to focus his energy on his visual performance.
First, Julia slightly darkened the room by adjusting the window shutters. This was done to reduce the surrounding visual distractions - the morning sunlight, the toys, the objects on the wall.
Julia then plugged the APH light box in a nearby electrical outlet and set it on the tray of the chair, talking to Colin and explaining to him what they were going to do for today’s lesson. They talked about shapes… circles, squares and triangles, and Julia assisted Colin as she traced the outline of each shape with his hands. Then they felt the raised edges on the shapes. They matched like shapes. They matched shapes by colors, red and yellow, which are especially good for children like Colin who suffer from Cortical Visual Impairment. Each time Julia visits Colin, she leaves a note for Colin and a special note to his parents. Today’s note to Colin was shown on his light box. It was an amazing lesson.
Making music with Teacher Patty
This school day, Colin enjoys participating in a music activity. Colin is making music with his desk bells. Teacher Patty props up two Boppys and places Colin in the middle so his arms can comfortably hang over and play the bells, a recent accomplishment. This position – a favorite - allows Colin to have upper trunk support as he concentrates on making music.
Colin's Mom recommends another new book
Lisa T. (Colin's Mom), recommends a new book entitled “Move into Life,” written by Anat Baniel, creator of The Anat Baniel Method. In addition, Lisa bought the 10-hour DVD of a two–day Anat Baniel special needs kids workshop. Lisa also mentioned that Dr. Norman Doiges, author of “The Brain that Changes Itself,” actually interviewed Anat for his newest book on the brain. He was evidently very impressed by her work.
Colin is getting a new seating system
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At the request of Colin’s physical therapist, Joy Huguet of Joy for Kids Physical Therapy in Burbank, California, Richard Hopson of Richard’s Rehab Solutions, brought several different seating systems that might be appropriate for Colin.
The Bug Seating System by Ormesa, available from Adaptive Mall, seemed to work the best. With Colin’s mother assisting, Richard manipulates the controls on the seating system to achieve the positions recommended by the therapist. The Bug can tilt or recline. Colin plans to use the Bug seating system for daily feeding and fine motor activity. Sometimes, he will use the chair right at the family table. Other times, he will use the Bug with the tray. Richard determines if there needs to be an adjustment when the unit is made for Colin, or if one of the pre-existing sizes works. Additional pieces that are available from the manufacturer — such as a head support — are considered. The Bug seems to be a very versatile, yet comfortable and safe, solution for Colin’s needs. Colin and his family look forward to getting the Bug.
Highly recommended book
Lisa T. (Colin's Mom), recommends a book by Norman Doidge, MD, “The Brain That Changes Itself: Stories from the Frontiers of Brain Science.”
THE NEW YORK TIMES book review states:
“The power of positive thinking finally gains scientific credibility. Mind-bending, miracle-making, reality-busting stuff...with implications for all human beings, not to mention human culture, human learning and human history.”
The book is available at our Special Kids Place Store.
Colin playing with toy using capability switch
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Colin continues to learn about the cause and effect of using the capability switch to make his toys move. Here he is pressing the pad on the capability switch to engage the Penguin Fan to turn on. He watches the toy closely and when prompted with “Move the penguin” or “Press the button, Colin,” he will eventually press the pad to start the action.
Angela, Colin’s caregiver, usually sets up a play activity after he has eaten a meal, such as lunch. She rolls the Kaye Kinder Chair into the kitchen and interacts with Colin while she does her work. Colin watches Angela and plays a bit with the toy and delights in her praise when he is successful. He likes to see the fan’s neon light show and the multi colored blinking LED lights.
Note: Though the Penguin Fan is now discontinued, toys like this are available from Enabling Devices. This one is 7 1/2” high and uses 3 AAA batteries. The switch is sold separately.
Colin...a month later
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Colin patiently watches as Ashley adjusts the harness on the gait trainer.
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Colin learning to use a gait trainer
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Submitted by Judy Taback (Colin’s grandmother)
Colin’s physical therapist from Los Angeles Unified School District, Ashley Nishino, is having Colin try a Rifton Pacer Gait Trainer for the next few months. The gait trainer will help Colin to improve his mobility. This adaptive walker provides weight bearing support so helpful in teaching kids with disabilities how to walk. It is the first time Colin is able to stand upright and begin to move around.
The first time I observed Colin in the new piece of equipment he was not happy. The goal was to move forward but Colin was fully protesting and not moving at all. The next day, once the back wheels of the gait trainer were unlocked and he was able to slightly move the gait trainer in either direction, Colin was happier and seemed more comfortable. He was busy looking at his feet as Angela Pichinte, his caregiver, was adjusting them and with a lot of direction from her, did move a bit. The third morning Colin was willing to be in the gait trainer and was holding his head and body more erect. With Angela’s encouraging words, “Walk Colin, you can do it!” and setting his legs/feet in the correct position, Colin took a small step moving forward.
I think Colin is going to love doing this as soon as he gets the hang of it. It is a big step forward. More the next time I visit.
Colin uses toys with assistive devices
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This switch is sensitive to the littlest touch
Colin is learning how to activate the capability switch that will turn on the fan. Today, he is wearing a Therasuit that provides body support while his therapist teaches him to use the switch.
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Colin has activated the capability switch. The fan is turned on.
Colin also enjoys playing with plush toys from Enabling Devices such as Rikki, the Rooster; Roly Poly Calf and Waddle Quaddle, the Penguin. The capability switch is sold separately.
Plush toys from Enabling Devices
Colin using Augmentative and Alternative Communication (AAC) tools
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Colin using BIGMack Communicator
Colin is continuing to use Augmentative and Alternative Communication (AAC) tools. While Colin has not, as yet, learned to feed himself, he has learned to communicate his desire to eat by using his BIGMack. We prompt by saying, "Colin do you want to eat?” or, when appropriate, “Colin, do you want more?" When he presses the large red button (the activation surface), the voice of Colin’s sister, Claire, has been programmed to say, ‘more food please.’ Immediately, we bring the spoon with the food to Colin’s mouth, and he opens his mouth and is fed. This is all pretty amazing and can work many times in a row.
The BIGMack Communicator is a versatile device that can be used as a single-message communicator or as an ability switch. One-shot timer prevents message repetition. Features 20 seconds of memory, volume control, external switch jack, and an external speaker jack. For children and adults who are unable or reluctant to use their voices, AbleNet offers a complete line of user-friendly Augmentative and Alternative Communication (AAC) tools and systems that encourage social interaction, while fostering greater independence in virtually any environment.
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Colin using Cheap Talk 4 In-line Communicator
According to Enabling Devices, “This user-friendly teaching tool is great for providing communication and cognitive support, as well as enhancing expressive and receptive language skills.” Patricia Morgan, Colin’s home school teacher, continues to use this device as a communicator with Colin. Colin anticipates the messages from his teacher and is improving his skills pressing the colorful buttons. Each teaching session, Teacher Patty records a brief message, a song or even Colin’s voice on the device.
Julia Russo reads to Colin
Julia brought a book, Have You Seen Birds, by Joanne Oppenheim and Barbara Reid, to read to Colin today. Julia visits Colin twice a month. She likes to have Colin work while he is in his Rifton Stander. However, Colin did not want to go in his stander and protested. He was voicing an opinion, and Julia said that was a good thing. She spoke to him gently but firmly, explaining what she was going to do and that he needed to get to work. After Julia started reading the story, Colin settled into the learning activity — held his head up to see the pictures, listened intently and even helped to hold the book. Each time Julia visits Colin, she leaves a note for Colin and a special note to his parents. Today’s note to Colin is shown below. The book, Have You Seen Birds, is available at our Special Kids Place Store.
Julia Russo, Teacher of the Visually Impaired
Los Angeles Unified School District, Visually Impaired Program
(213) 228-9534 X98
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Colin's Mom recommends a new book
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Colin working with Occupational Therapist Carrie Nakamura
Practicing kneeling and sitting
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© Special Kids Place
However, the main focus of today’s visit was to improve Colin’s eating skills. Since Colin has achieved fairly good head and trunk stability, food can now safely be presented via a spoon or cup. So, Carrie worked with Colin’s caregivers on positioning the spoon when feeding him. As Colin gains oral experience, the gag reflex will recede from the middle third of the tongue to the back of the tongue, so it is extremely important that the spoon is not placed too far back on his tongue. Colin has learned how to use sucking to extract the food off of the spoon. He is swallowing, though sometimes needs the reminder of a gentle stroke on the side of his jaw to do so. This presentation will continue until Colin has achieved the eye hand coordination needed for him to feed himself. Then he will need to acquire the upper extremity dexterity to progress to using a spoon. The integration of oral motor skills and eventually self-feeding will come, but it will take work and daily practice. Though growth and neurologic maturation plays a major role in feeding development, this learning exercise was crucial in helping Colin to get it right.
Colin improves his eating skills
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Carrie also reinforced how important the caregivers’ responses are to Colin’s feeding behaviors, and how important it is to Colin’s development of competent feeding. Carrie reminded the caregivers that it was important to have a conversation with Colin as he is being fed.
Colin is also learning more mature methods of feeding and manipulating food in his mouth such as biting and chewing. Different food consistencies-chunky, chewy, hard are being offered and Colin is experimenting with the choices. Due to the new textures of food, sometimes, Colin just holds the food in his mouth until he is reminded to swallow. But, he is learning. Colin’s improvement, over the past month that Carrie has been working with him, is amazing.
School time with Teacher Patty
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Teacher Patty brought Russian Matryoshkas nesting dolls that were painted with the Disney motif of Mickey Mouse. To have Colin work with the nesting dolls, and also work on sitting and balancing activities, Teacher Patty arranged the Boppy cushions in opposite directions and placed Colin with his legs crossed in a sitting position. Colin’s ability to hold his head and upper trunk erect for greater periods of time has improved consistently over the past few months, so he was able to do this.
Colin gets a KidKraft Sort It and Store It Bin Unit for his toys…
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Colin got a new toy storage unit for his 6th birthday. After looking at many options for sorting Colin’s toys - especially the ones he uses for his home school program - we decided on the KidKraft Sort It and Store It Bin Unit. Not only did it provide twelve colorful baskets in which to put toys and supplies but it was easy to assemble. Today, for the first time, Teacher Patty began to show Colin how to select a toy from the bin. Since she was going to talk about ponies, she encouraged Colin to look for the pony hand puppet in the storage bin. Colin has many of his own hand puppets which we placed in the bin, and he enjoys storytelling when the reader uses them. This item is available at Special Kids Place Store. Look for either the Products or Toys pages.
School time reading with Teacher Patty
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Colin likes it when Teacher Patty holds him close while they look at a book together. Today they are looking at "The 10 Button Book," a counting book written by William Accorsi. Teacher Patty will help Colin to put the buttons (each attached by a long ribbon) in the holes on each page. Sometimes Colin will sit at his Leckey chair with the tray to work with a book like this one.
Another position for learning
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Sometimes, at the end of his school day, though still “at school” Colin works in a more comfortable position. Today, while relaxing on two stacked Boppy’s on his tummy, he is making music with the Fisher-Price Rainforest Rainbow Piano. This musical toy “features colorful keys that are easy to bat and roll”. Colin also enjoys coloring with marking pens when he is in this position.
Yoga bliss for Colin
Another thing Colin did this past summer was to start Yoga for the Special Child therapy with Limor Landau. Limor, a certified instructor for Yoga for the Special Child, was trained by Sonia Sumar in Sarasota, Florida. She came to our home for the therapy session. Through the Yoga poses, Limor hopes to increase Colin’s body awareness, strength and flexibility. She also will teach him breathing exercises and relaxation techniques.
When Limor first entered our home, she looked at the different areas within our home to find the most appropriate place to work with Colin. Limor wanted the space to be free of distractions, but most of all, quiet; so she decided that the gym mat that Colin uses in our living room would be the best spot on which to work. And, so she began. She sat Colin facing forward, between her legs, cradling him as she manipulated his arms overhead, one then the other, gently, ever so gently, as she worked to extend his range of motion. Whenever Limor spoke, telling Colin each action they were doing, he seemed to listen intently and never refused to do what she asked. The hour went by far too quickly. Limor’s voice, her touch, and especially her skill in handling a child with special needs seemed to put Colin - and I must admit me - at ease, and made this first time therapy a great success.
It is now about three months later. Since it is a beautiful, warm fall day. Limor has decided to have the therapy session in the backyard under the branches of a big shady tree and brings Colin’s gym mat outdoors. It is a great idea. As Limor told me, "In children with special needs, the focus is to relax them and teach them how to use their bodies more appropriately. The idea is to gently stretch the muscles which are so tight.” With each pose, Limor puts Colin is into a different state of awareness and being outdoors is an especially nice place to be.
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Stretching the muscles...Extending Colin's range of motion
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This is the Half Locust Position.
This exercise is helpful to open up breathing passages by taking his shoulders back and opening up his chest.
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Colin is upside down - this pose improves circulation and revitalizes brain cells.
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Time for relaxation
As you can see from the photos, Yoga with Limor has come to be one of the activities that Colin most enjoys. It is his Yoga Bliss!
Home school begins again
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Colin is happy to see Teacher Patty
The new semester for Colin’s home school program has started. Once again, Colin is able to have Patricia Morgan, “Teacher Patty,” come to his home for school time - three days a week for 1½ hours each visit. Teacher Patty is a full-time in-school special education teacher with the Los Angeles Unified School District who also works as a supplemental home school teacher with the Carlson home/Hospital Program. It is nice to have the continuity and Colin was happy to see his teacher.
Teacher Patty noticed that there have been a few changes. To start off the school year, more space was created in Colin’s bedroom which doubles as his learning center. His “classroom” is less cluttered, has better lighting and will offer more choices for organizing his toys, books and AAC enabling devices. (Will post about Colin’s new "Kid Kraft Sort It and Store It Bin Unit" and new enabling devices in a later blog).
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Colin uses the Cheap-Talk 4 In-Line Communicator
Today Colin started school by sitting in his newly adjusted Leckey Chair. Since Colin has grown, Poppa had adjusted the legs to make the chair higher and was able to adjust the seat depth so Colin would have more room. Also, Teacher Patty brought a small vest and secured the vest to the chair with some Velcro. The vest helps Colin to sit properly while he is doing his lessons. The vest was designed by Patricia Morgan (Teacher Patty) and Shirley Smithe, when both were teachers at Lowman School, which is part of LAUSD.
Today’s lesson began by using the Cheap Talk 4 In-Line Communicator from Enabling Devices. The Communicator has four buttons. Each time Teacher Patty comes, she pre-records a message for Colin on the Communicator and Colin, when prompted, pushes the first button to hear what she tells him. Today, Colin found out that they were going to learn about time. Teacher Patty also brought a colorful plastic clock and an interesting book for the lesson. Teacher Patty usually uses the second button for sounds that characterize the lesson, such as the ticking of a clock, or she sings a song. The third button is used to record Colin's reactions to her requests such as "Colin talk," and he is begining to respond with "buh yuh." At the end of each lesson, Teacher Patty records a message on the last button, telling Colin's parents what he learned in the lesson.
Colin does lots of fun things in school. More about that in another blog.
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Colin learning about time.
What Colin did this summer
Colin has had an amazing summer. Julia Russo, his LAUSD teacher for the visually impaired, and Ashley Nishino, his LAUSD physical therapist, both came to work with Colin. So did LAUSD/Carlson home school teacher, “Teacher Patty,” Patricia Morgan. Colin also added two new friends to his support team. For three weeks in July, five days a week, four hours every day, Colin had the opportunity to work with physical therapist, Joy Huguet, Joy For Kids Physical Therapy in Burbank, CA. Though it was hard work, the play space was exciting, and Colin was able to learn some new skills. Colin also met Limor Landau, a certified yoga instructor, who specializes in kids like Colin and has a practice called Yoga for Special Kids. Limor came to Colin's home for Colin’s first session at the beginning of August, and continues every other week. Colin loved the experience. And then there was Colin’s trip to Carmel-by-the-Sea to visit Nonna and Poppa where Colin not only visited fun places but got to see his cousin, alternative therapist, chiropractor, Dr. Susan Nilmeier, DC. again. So many new adventures to tell you about and the story follows.
Working with Julia Russo, vision specialist/itinerant teacher
We know that it is important to provide adequate lighting for Colin. This room adjacent to the kitchen is perfect for Colin’s vision activities. Not only is there overhead lighting, but additionally light — not too bright — comes in through the large expanse of windows there. We try to place Colin’s back towards the window to reduce the glare.
Note: For the purpose of the photo shoot, Colin was placed sideways so the photographer could get between Colin and the window.
Julia put Colin in his Rifton Stander. The slanted tray on the Rifton Stander provides a good position for easier head and eye posture. With the addition of the Boppy on the tray, the book Julia was reading with Colin could be placed in an even better position for Colin’s use. Today Julia chose to use one of Colin’s books, Let’s Count, published by Sterling Publishing. The book has little spiraling holes on each page corresponding to the number on each page — two holes for the number two and so on —that are fun to touch with your fingers while the teacher teaches the basic concept of counting.
Note: Julia thought the glare of the plastic tray and being able to see his feet below was a distraction so she suggested, in the future, that we use a dark surface-such as a piece of black felt or a plain dark placemat over the clear tray that is attached to the Rifton Stander. She thought it would be less confusing to Colin if he could concentrate on something — a book or a toy against a dark, uncluttered background.
It was a successful lesson. Colin was able to use the techniques that made it easy for him to “read” and was very vocal and happy.
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Working with Physical Therapist Ashley Nishino
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Colin starts new physical therapy program
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Colin Goes on a Vacation…
Once at Nonna and Poppa’s place, Mom put Colin on a comfy futon next to her bed, and everyone fell asleep.
The next day, Colin and Claire met their cousins, who came from Santa Cruz, at the Monterey Bay Aquarium. There was no admission fee for Colin, as he is vision impaired. It is dark inside the aquarium building, so the brightly colored displays and fish that move about in the big tanks are easy to see and offer lots of visual stimulation however today, though, it was a bit crowded. When it is not too busy at the aquarium, you can also get up close to see the fish and the sea animals and they even have a touching pool where you can handle the sea creatures. When we went outside on the deck, Colin got to see the very blue waters of Monterey Bay and the sea birds flying around and he was animated at the experience.
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Colin and Claire visited the Monterey Bay Aquarium
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Then we all walked - Colin was in his Alvema Ito Stroller, an all-terrain pushchair that made travel arrangements comfortable — to Willy’s barbecue restaurant. Mom brought Colin’s food — fresh turkey-chopped in the little Cuisinart in Nonna’s kitchen and ordered some yummy mashed potatoes off the menu to go with it.
The next day we visited the little town of Pacific Grove. Colin and Claire each chose a book at The Works, a small book store with a highly knowledgeable and helpful bookseller. Nonna helped Colin choose Eric Carle’s book, “Mister Seahorse”, and Claire got a book that she liked. Mom read “Mister Seahorse” to Colin as soon as we got back to the house. Colin likes to be held when Mom reads to him and loves looking at the colorful pictures on each page.
However, the best day of the trip was Colin’s visit to Big Sur. We had lunch outdoors on the deck at The Big Sur RIver Inn and the access in was easy for Colin’s stoller. After lunch, Claire and the others went down to the river by taking a few steps off the deck to a ramp. However, Colin was able to use the wheelchair/stroller access on the side of the restaurant and there was even one further down the way off the parking lot. It was a warm day and people of all ages were enjoying the cool waters of the river. Even Colin had a go at it - while being held by his Nonna - though at first the water was cold and Colin pulled his feet up so they would not touch the water.
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But, finally, when Claire, sitting in a river chair provided by the Big Sur River Inn, held Colin, he put his feet in the rippling water just like Claire and let the water go over his feet…
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and he liked it!
Further down the highway, we stopped at the Big Sur Spirit Garden. While Claire climbed up the ladder to the Spirit Nest, Colin enjoyed some of the sights in the Spirit Garden, including the colorful totem poles, and Mom bought Colin a colorful handmade shaker that made interesting sounds.
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Colin visits Dr. Susan Nilmeier, Chiropractor
Dr. Nilmeier put Colin at ease by talking to him as she positioned the examining table. Then she began the therapy by gently adjusting Colin as he lay on the table. She also worked on stretching his muscles and improving his range of motion by releasing the tightness in his shoulders and arms — through gentle manipulation. Colin’s mother sat close by and lent a soothing touch as the doctor worked on Colin.
At no time did Colin indicate that he was in discomfort. In fact he remained calm and patient as she worked over his body.
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Highly recommended series of articles
Colin's sister recommends a book for you
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Found it!
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This is a good book
Colin’s 11 year old sister Claire asked her school librarian to recommend some books to read. Among the books that she recommended was the book “Rules”, written by Cynthia Lord. “Rules” is about a girl who has a disabled brother, and how she forms a friendship with a classmate of her brother. Claire so enjoyed “Rules” that she, in turn, recommended it to her friend Davi, who also read and recommends it! “Rules” is available at Special Kids Place Store.
This is a good book for children ages 9 and up.
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Colin gets a haircut
For most kids, getting a haircut can be a traumatic experience. For a special needs child, it can be terrifying. I have found a wonderful kids’ salon that actually makes the experience brief, painless and even a little bit fun. Today, Colin got his haircut by Heather Mauck at Lollicut in Tarzana, California. Over the years, they have repeatedly been voted Best of LA in local magazine polls. But what made it work for Colin was the kindness of the stylist and the speed at which she cut, making it a very quick and friendly experience. Heather was patient, engaging and very sweet to Colin. She told me that she had worked at Cozy’s Cuts for Kids, a childrens' salon in Manhattan for over 10 years. She had a rather large clientele of kids with special needs which made her a perfect match for Colin.
Lollicut has toy cars that most kids like to sit in to get their hair cut. However, Colin always sits on my lap during the cut. Today, since I wanted to photograph him getting his haircut, he sat on the lap of his caregiver. For safety, I usually hold his head with my right hand to stabilize it and since he likes to reach out to grab at the comb and scissors with his left hand, I gently hold it, too. Heather used a large make up type brush throughout the cut, and frequently wipes away the hair; usually this is only done at the end of a haircut. It made Colin giggle!! I have been to many kids' salons. This one is the best we've encountered. Of course a cherry lollipop and big, yellow balloon were a great treat at the end of the haircut!
18663 Ventura Blvd.
Tarzana, CA 91356
(818) 342-6171
http://www.lollicut.com/
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Starting to cut
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Colin’s head being steadied by his caregiver
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Wiping cut hair with large makeup brush
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Almost through
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All done
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Colin lookin’ good
Easy to eat treat
When we go out to a restaurant, I always prepare food for Colin ahead of time, to bring with us. Today, Colin found a delicious and healthy dish called RIZ AU LAIT at Le Pain Quotidien in Studio City, California. It is like a rice pudding, made of brown rice, soy milk and agave, and topped with raspberries. It’s all organic and gluten-free but more importantly, it’s delicious and easy for him to chew and swallow without much effort. He loves it! For locations, visit www.painquotidien.com
A first class physical therapist from Los Angeles Unified School District (LAUSD)
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School districts often get a bad rap for their lack of personalized attention for special needs children. However, LAUSD and Ashley Nishino, P. T., the physical therapist who was most recently assigned to Colin by LAUSD, are some of the exceptions. Ashley is always looking out for Colin’s best interests. She was the person who was responsible for Colin’s getting a Rifton Stander from LAUSD. Ashley has worked on mobilizing Colin’s spine, stretching his pectoral muscles and, in the accompanying photo, she is stretching his hamstrings using a popliteal stretch.
Colin is very fortunate to have Ashley as a therapist.
On the way to grasping, holding & counting
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At birth, Colin suffered a brachial plexus injury and has had limited use of his right hand. Colin also has had an aversion to using his left hand. However, this past school year, home school teacher Patricia Morgan has made a special effort to engage Colin in activities that promoted the skill of grasping and holding. He now has the ability to grasp and hold with his left hand. He practiced with a crayon, a paint brush, a rolling pin, a baton, and drum stick and today, Colin was able to hold a toy flower stem with a lady bug on the end to the count of “50”. Teacher Patty shook the rigid stem up and down to the cadence 1, 2 , 3, 4, 5, …, to 50. Surprisingly, Colin concentrated and held on. Teacher Patty combined the counting curriculum with the grasping exercises and turned it into a fun game.
Huge progress with balance
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Through a variety of activities, Colin’s home school teacher, Patricia Morgan, has been working with him to achieve better balance. During one of Colin’s lessons, she showed us the huge progress he was making. Imagine our surprise when we entered the room and found Colin, head controlled, upper body erect and focused on using his muscles to kneel ...without Teacher Patty’s support. WOW!
Colin using Creepster Crawler
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Colin using the Creepster Crawler Trainer. May 5, 2009
Colin using Head Float during water therapy
June 29, 2008
March 27, 2009
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One of Colin’s favorite things is water therapy. He enjoys his daily baths in the Jacuzzi tub as well as activities anytime in the outdoor hot tub. He kicks with anticipation as soon as his clothes are removed. Once the head float, available from Danmar Products and Abilitations, is put on and Colin is placed into the water, his joy is undeniable. Sometimes he wildly splashes the water with his hands and feet. Sometimes he just relaxes and experiences a freedom of movement by floating around. While in the warm waters of the Jacuzzi bath or hot tub, Colin receives daily physical water therapy from his dad — Dad is actually in the tub — to improve Colin’s strength, circulation and the range of motion in all of his limbs, especially his injured arm. The water therapy enhances Colin’s muscle tone, reduces his stiffness, and prepare him for his daily therapy tasks (out of the water, of course). Sometimes, too, in a darkened bathroom, — while Colin is in the tub — Colin’s dad does vision therapy with gadgets and toys
Colin first used the head float at the UCLA Intervention Program, where he participated in the Poly Wogs program, June 2005. At that time, Colin’s mom got into the pool with Colin, the teacher/therapist and the other mothers that were in the program.
Using the Head Float, there is no need to support Colin’s head manually,
his head remains stable, the caregivers hands are free and water time is a
positive experience for everyone — Colin, his parents and caregivers alike.
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Colin using Communicator with teacher, Patricia Morgan
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Front of Communicator
Colin is learning to use a Cheap Talk 4 In-Line Communicator from Enabling Devices. These communicators give people who are non-verbal or speech impaired a “voice”, enabling them to communicate through messages pre-recorded by others. Colin’s teacher, is Patricia Morgan, a full time in-school special education teacher with Los Angeles Unified School district who also works as a supplemental home school teacher with the Carlson Home/Hospital School Program. “Teacher Patty” has prerecorded short songs and messages for Colin to hear. When prompted, Colin is learning to push a colored button to hear the recorded message or song. Today Colin is learning about Cinco de Mayo. May 4, 2009
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The story of Colin's need for vision therapy
OBSERVATION OF SYMPTOMS
Soon after his month long stay in the NICU at the hospital where he was born, Colin began to receive the services of Claudia Kerns, a wonderful pediatric physical therapist recommended by Colin’s pediatrician, Marianne Finerman, MD. Claudia came to Colin’s home to treat the shoulder dystocia and resulting brachial plexus injury he suffered at birth. However, within a few months — Colin was about 4 or 5 months old , Claudia became was concerned that Colin was not reaching his developmental milestones — not tracking movements, not reaching and grabbing toys. Daily observations by Colin’s mother, father and grandmother and observation by Dr. Finerman at Colin’s monthly appointments, concurred with her findings. It was decided that Colin undergo further evaluation of his condition. Extensive testing concluded that Colin had suffered traumatic brain injuries that included damage — not known at the time of his birth — to his vision.
NEURO-OPHTHALMOLOGIST EVALUATION
Colin’s pediatrician then referred Colin to Dr. Mark Borchert. Dr. Borchert is connected to Children’s Hospital and the Doheny Eye Clinic in Los Angeles and is considered by professionals and parents alike as one of the top pediatric neuro ophthamologists in Southern California. After testing Colin, Dr. Borchert characterized the diagnosis as both good and bad news: the bad news was that Colin had Cortical Visual Impairment (CVI), the good news was that Colin could, in fact, see intermittently, and the prognosis was that his vision probably would improve over the years. However, Colin likely would never see well enough to drive a car. It was shocking news.
CALIFORNIA DEAF-BLIND SERVICES
After receiving this diagnosis, Colin’s mother and grandmother started to search for help. Colin’s grandmother got in touch with California Deaf-Blind Services, a program headquartered at San Francisco State University. However, since this program only deals with individuals that are both visually and hearing impaired, she was told that Colin did not qualify for any of their programs because he was not hearing impaired.
JUNIOR BLIND OF AMERICA
Colin’s mother began her investigation with Junior Blind of America, a Los Angeles based foundation dedicated to helping children and adults who are blind, visually impaired or multi-disabled achieve independence. She went on-line to see if there was a program that could help Colin and set up an in home evaluation appointment for him. Out of that evaluation came weekly therapy sessions and some suggestions to stimulate his vision.
LAUSD PIVIT PROGRAM/DIVISION OF SPECIAL EDUCATION
In addition, Colin’s mother learned about the programs for visually impaired infants and children offered by the Division of Special Education of the Los Angeles Unified School District. Colin was evaluated by that group and started in the PIVIT Program that consisted of weekly vision therapy sessions, until he reached their cut-off age of 36 months. Colin was then re-evaluated, found to still need vision therapy, and continues to receive services from the LAUSD, Division of Special Education, visually impaired program.
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Colin, age 10 months, being held by his caregiver, Angela Pichinte, during his vision therapy session. Infant Teacher pictured is Sue Edwards from PIVIT Program, August 6, 2004
VISION THERAPY BY PARENTS
While all of this professional therapy was occurring, Colin’s father, Christopher, took over the daily — at home — visual therapy for Colin. Christopher, guided by the Glenn Doman book, What To Do About Your Brain-Injured Child, used wonderful lighted toys and gadgets in a darkened room — sometimes while doing Colin’s water therapy in the bathroom — to perform therapies to stimulate his son’s vision. This therapy has made a significant difference in Colin’s visual improvements.
LESSONS LEARNED
Some important lessons from the above story are evident: observations from people other than doctors are a major source of information in getting the right diagnosis and subsequent care. There are many therapies available that can be helpful. Parents, grandparents and caregivers can and should perform many of the therapies that will help as often as possible. This repetition can be a key to success in your child’s recovery process.
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Strides Therapeutic Riding
“The mission of Strides/Sinlimites Therapeutic Riding Centers, located at the north end of the San Fernando Valley, Los Angeles, California, is to improve the minds, bodies and spirits of children and adults with special needs through the highest quality of equine-assisted activities and programs. We are committed to being an inspiration and educational resource to the Therapeutic Riding profession, both nationally and internationally. Our vision is a community where all people, regardless of ability, can achieve their fullest potential.” From Strides website.
After using another facility that was not NARHA affiliated, Colin’s mother chose to use Strides Therapeutic Riding, a NARHA Premier Accredited Center to continue Colin’s therapeutic riding program. She was impressed with Strides attention to safety, not only for the facilities and instructors, who are all NARHA Certified, but for the riders. Nora Fischbach, the executive director at Strides, insisted that all riders wear a protective helmet-no excuses. When Colin’s newly purchased helmet was too big, Nora went to her tack room and produced a smaller helmet for him to use. She did this several times-very impressive. Also impressive was the ratio of volunteers and their positive attitude towards each rider. There was never less than three, sometimes even four volunteers to assist with Colin’s therapy and assist with the horse. The horses are carefully chosen, well trained, well cared for and very gentle. There is no doubt that Colin has shown improvement in his balance, muscle strength and range of motion over the past year and Strides therapeutic riding is definitely is part of the change.
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Strides Riding Center, Granada Hills, California, June 13, 2008
Colin & Dr. Maoshing Ni, Acupuncturist
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May 2, 2009
From the very beginning of treatment for his birth injuries, Colin has had acupuncture and Chinese herb therapy at Tao of Wellness, located in Santa Monica, California. Early on, the acupressure method was used but eventually the treatment consisted of inserting and quickly removing the sterile, fine filiform needles which are used to stimulate the nerve pathways that have been blocked by Colin’s birth injury .
During today’s treatment, Colin was also treated for his persistent sinus infection. Though treated with antibiotics, the nasal congestion had continued. Today, was a “first”. Dr. Mao inserted about ten fine filiform needles in Colin’s head and left them in removing them about twenty minutes later. Colin did not cry. Maybe the needles tickled! Here is Colin with Dr.Maoshing Ni, co-founder of Tao of Wellness.
Note: Within one hour, Colin’s nose began to drain. The drainage continued for several hours. By the end of the day, he could breathe through his nose and was able to eat . By the next morning, the congestion had ceased.
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Colin working with physical therapist, Claudia Kerns
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Working on Colin’s head control, August 2004
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Working on positioning; Colin focusing on mirror at his feet, 2006
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As you can see in these recent photos, the ongoing physical therapy to improve Colin’s head control and trunk stability is allowing him to sit…almost alone. March 2009
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Talk About Curing Autism (TACA)
We received an email from Kate Movius, who wrote a wonderful article on “The Special Needs Family” in the February 2009 edition of LA Family. In her email, Kate mentioned that “parents need all the support and advice they can get as they walk the strange, mysterious and sometimes beautiful path of raising a child with autism. The TACA website here in Southern California is another great resource for parents and caregivers.”
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Colin with craniosacral therapist, Benjamin Shield
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Colin, age 8 months, being treated by Dr.Benjamin Shield, May 1, 2004
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Colin with Dr. Shield...about 5 years later March 28. 2009
“I am utilizing manual therapies to create more stability, strength and range of motion for Colin. The deeper goals are to create as much choice as possible in Colin's structure and emotional expression and to use the treatment to bring Colin back to 'original blueprints' as much as possible. Thanks for creating the site. It will have a positive effect in many people's lives.”
Dr. Benjamin Shield, May 17, 2009
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Colin using Quadriciser®
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June 2006
First tryout of Colin's new Quadriciser®. Pictured with Colin is Larry Bohanan, the inventor of this amazing piece of equipment, which was lovingly given to Colin by long time family friend, Linda Sullivan. Larry made the trip from Knoxville, Tennessee, to Colin's Encino, California, home to tweak the unit and make the necessary adjustments to insure a perfect fit. Larry even took out a needle and thread to sew some extra padding in place to allow greater comfort for Colin, at 2 3/4 years old, his youngest user.
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March 3, 2009
Colin enjoys listening to stories on tape or a favorite CD while exercising. He also has a mirror attached to the post in front of him. Colin works out on the Quadriciser® for 15 minute sessions twice a day
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Colin using Rifton Stander
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Colin being strapped onto his stander by Angela Pichinte, his caregiver
March 3, 2009
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Angela turning handle to put stander in proper position
March 3, 2009
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Finally, Colin gets to watch “Sesame Street” on TV
March 3, 2009
Colin’s ability to stand took a big step forward when the Los Angeles Unified School District provided him with a Rifton Stander. This amazing piece of equipment consists of a board with some Velcro straps in which the child is strapped and then can be moved into a vertical position so that the child is standing. Doing this for periods of 20 minutes — no longer — twice a day, has improved Colin’s hip and muscle development to the point that his legs are now able to bear weight. Some of the activities that Colin does while in the stander are working with home school teacher Patricia Morgan and vision therapist Julia Russo, watching Sesame Street on TV, playing with toys that are placed on the tray, looking out the window, watching us prepare his lunch or dinner. The best part is that the Rifton stander is easy to use and the operation is accomplished easily with only one adult doing the work.
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Article written by Robin Rappaport, a NARHA Registered Therapeutic Riding Instructor
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Strides Riding Center, Granada Hills, California, August 8, 2008
The following article was written by Robin Rappaport, a NARHA Registered Therapeutic Riding Instructor, at Strides Therapeutic Riding Center. Robin is the woman in the blue cap in the above pictures.
THERAPEUTIC HORSEBACK RIDING - MORE THAN JUST FUN!
It may surprise you to learn the broad spectrum of benefit associated with therapeutic horseback riding, particularly for children with special needs. According to the North American Riding for the Handicapped Association (“NARHA”), equine activities are used as a form of therapy to achieve physical, psychological, cognitive, behavioral and communication goals. Furthermore, horseback riding is a lot of fun and encourages a general sense of well-being. Unlike more traditional learning venues, children truly enjoy participating in an outdoor activity, the feeling of a ranch atmosphere surrounded by large yet gentle equines and of course, an abundance of fresh air. The advantages of therapeutic riding has been described as an array of benefits where physical, psychological, educational and social rewards meaningfully and joyfully overlap.
The physical benefits are easiest to see. First and foremost, therapeutic riding improves balance. The 3-dimensional rhythmical movement of the horse strengthens the muscles of the rider and in turn, improves coordination. Further, since the horse provides instant feedback to the riders, quick reflexes and enhanced motor planning are easily developed. Simply sitting on a horse stretches tight or spastic lower leg and thigh muscles. Stomach, back and hand muscles are worked as well. As spacticity is reduced, the rider’s range of motion is improved.
Horseback riding gives riders a general sense of well-being. Possibly one of the greatest benefits observed time after time is improved self-confidence and achievement. When a child is able to master a skill such as controlling a 1,000-pound animal, he or she not only feels a surge in confidence but he also benefits from a sense of freedom and independence. And equally important, children quickly learn the importance of emotional control, patience and self-discipline.
Education training is part of many therapeutic riding programs. Games are often used in an arena setting to reinforce shapes, colors, letters and words. In addition, sequencing, patterning and motor planning are readily incorporated into lessons to help facilitate increased learning. Eye hand coordination and visual / spatial perception are also enhanced as riding skills develop.
Finally, children learn best when experiences are pleasurable. Through riding programs, friendships are formed and bonds of trust are developed between riders and horses as well as between riders and instructors. Therapeutic riding not only is a fun recreational activity, but it also enhances education and physical and psychological well-being. Without question, horses put smiles on the faces of children.
Therapeutic horseback riding is truly inspiring. As a parent of a child with special needs as well as a therapeutic riding instructor, I can tell you that when children are on horseback, their perception of themselves improves. Suddenly they are in charge, taking command and providing direction to a large, strong animal. This type of empowerment instills pride and a sense of accomplishment, and is evident with each step or activity. It’s as if on a horse, their abilities seem limitless. Therapeutic riding programs provide children with an opportunity to live out their hopes and see themselves in a way that ordinarily might seem elusive. As I helped a young boy sit on a horse and hold his reins properly, I asked him if he’d ever been horseback riding before and he answered, “No, but it has always been a dream of mine to ride a horse.”
Note: Safety is of utmost importance. The North American Riding for the Handicapped Association (NARHA) sets high safety standards for facilities and instruction.
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Colin with special education teacher, Patricia Morgan
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“Teacher Patty” shows Colin letters of the alphabet on a magnetic board, November 2007