Hotels and guests houses

We used closets with a chest in front of it when she was little. Don't forget to add familiar security objects. Music is a portable item to try to use. Also made boundaries by cornering off a corner of the hotel room with the bed. You can use an expandable extension rod on closet doors or duct tape up high. We also tried tents in the corner of a room to give the idea of "this is where you sleep" but she just rolled it!! Oh well, we kept trying... At my sister's house we emptied a big walk-in closet for our 2 week visit. This provided us with our first restful vacation/overnighter EVER. Use a bunje cord for short visits or turn the doorknob with lock on outside for long visits. Grandparents installed a permanent slide lock on door and closet doors. We still had to empty out the entire bedroom when we would visit. Her other grandparents, we can't stay overnight easily there except now that we have Tom's invention that's sure to give us FREEDOM! We also used the "sleep in the car seat" idea: Ren-o-lux reclinable (Century now makes similar models)car seat put in the corner of a room to prevent tipping over until she outgrew that.  Sleep is not a good issue in our house.....:)

TOM'S INVENTIONS:  Tom first invented the blue collapsible enclosure (e-mail us if you want some plans) and it worked great until Kailey figured out she could strong arm the poles next to the wall until they slipped out.  We then came upon the heavy poles with a clamp when at a t.v. studio filming a local A.S. spot.  We could re-adapt the blue enclosure to fit around the poles and Kailey would NEVER be able to get out.....we think.  The poles are expensive but if you are like us, sleep will be worth every penny!    We did try another idea first, before re-adapting the blue one. We wanted to come up with an idea for other parents that wasn't as complicated as setting up the blue idea.  Once we had found these poles the tent idea came back as an option.  We bought a tent, clipped off the inside zipper tab, cut out the inside hanging pocket (anything your angel will pull on and rip).  We felt we should probably take the tent and have the zipper of the door reinforced/double stitched.  We use plastic zip ties loosely around each pole and through a tab on the side of tent.  This still allows for movement without the tent poles popping out.  We zip tie the tent poles where they cross on top of the tent.  We secure the outside zipper tabs with a keyring.  Our experiment in a hotel with this didn't work great.  We feel it needs 4 poles total to secure it.  We just haven't had the emotional energy to order 2 more poles and try it again.  We'll let you know when we do, but we think we have hit on one here.  Especially if you begin with this when your child is young and used to it.    

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Pajamas: I won't begin to tell you the process we went through to get to this point.....Now we use diapers with an extra diaper strip/pad inside, quilted underpants on top to prevent getting into diaper when it's messy, long one piece Spandex leotard to provide deep pressure to aide in calming, then footed p.j.'s turned around backwards (2 pair in the Winter). Sew the feet on backwards or just twist around. In the summer we cut the arms and feet off the footy p.j.'s. Since we have air conditioning it's kept cool. Thin material p.j.'s didn't work as Kailey would push and pick right through them to her diaper. She never did this with the heavy ones. This solved all problems. If your child is Houdini and slips his arms out and into the p.j.'s to get to the diapers, put extra tight outer ones on. The full length Spandex helps here too. Other Ideas: Try Teresa Tetreau's Escape Proof p.j.'s, Wrestling outfit on over diapers, duct tape around diaper tabs!, Homemade extra heavy footy p.j.'s (we did this when younger because of temperature irregularity - She got extremely cold limbs). Large sized even adult sized footy p.j.'s can be found at J.C. Penney's, Target, Meijers (usually in the girls dept./have seen plain colors too), L.L. Bean catalog.

Escape-Proof Pajamas:

Teresa Tetreau’s Escape-Proof Pajamas!!

Fold right side out, pin ends even with zipper edges and stretch evenly around. Sew. You’re done!!!

Added features:

Double knees: Before sewing pieces together, cut a piece of fabric for each leg to double the thickness of the knee area. I do bottom 2/3 of leg. Stitch in place onto wrong side of fabric and then sew garment together as above.

Back tab: Cut two pieces of fabric. Sew right sides together leaving straight edge open. Turn outside and press. Make button hole turn under open edge and pin in place on back. Stitch in place and sew on a button.

Waist casing and belt; Use a regular belt or make your own with 1" webbing. Cut a straight piece of fabric ¾" wider than webbing or belt and the same length as the waist of the jumpsuit. Turn under ¼" on all edges. Stitch ends of casing to form neat edge. Top stitch in place around waist leaving ends open by zipper. To make belt, cut webbing same as child’s waist measurement. Sew a 2: piece of 1" wide elastic to one end of webbing. Sew a button to the other end. Make a button hole in the elastic. Slide webbing into casing.

Length can be added next year by cutting around jumpsuit 2" below zipper and inserting a band of fabric or adding a whole new bottom section if the knees are worn out. Whatever works.

Keep the pattern. It’s easy to keep altering it year after year.

I usually make two jumpsuits at once, assembly-line style. It’s almost as fast as making one.

Teresa Tetreau 2320 Selwyn Court, Kelowna, B.C. V1V 1N1 (604) 868-9560

***THANKS TO TERESA FOR SHARING HER IDEA J

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The Kitchen

Choice Boards/Books: Whether using real objects or pictures, have choices available so your child can request to eat. Have only pictures/objects out that you have available that day so child doesn't get frustrated.  See Communication section and Laminating Tips. 

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"The Dinner Hour" (High Stress Time for me): 1. Special Activity only for that time. For example: Fill a playpen with balls or set up child's favorite activity in highchair. Pick something that you don't have to assist in so you can tend to preparing dinner. 2. High Chair with communication device to request "more please" and a snack food given a few pieces at a time to give extra practice. I taught Kailey to use one of her vocalizations to get my/peoples attention. I'd intentionally ignore her till she "called" me or I would cue her by making the vocalizations while still ignoring her.   Later on I talk about boundaries being important.  The use of the Tripp Trapp Chair helps give calmness and control to your angels body, when they can't do it themselves.  We use this for eating and toy play.  Also a wonder for doing Kailey's hair!  We had to put rubber feet/tabs on the bottom  (Kailey now reaches the wood floors and pushes around)  Some people whose children are extremely active have used an eye hook on the back of it and attach it to a wall to prevent tipping over.  I like it because it's less bulky and more normal looking than some special needs chairs/trays.  Also, it travels very easily to less angel-proof homes.  This chair helps Kailey to maintain better focus and attention on toys or activities.  You may need to further adapt if your child needs it (pummel between legs, sitting on Dycem, seat belt.)  Kailey loves her chair and can even carry it to me when told to get her chair for dinner!  

 
Tripp Trapp Chair with Tray

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Dinner: We went through a period where Kailey was awful at the dinner table so I would just feed her ahead of time and she then played in the highchair. It seemed to help matters and gave some nice calm family mealtimes.  Maybe later I can add more about eating and O.T. issues.  I find the divided deep plates shown here work great for Kailey.  The sides give support in scooping but also in holding containers that food might be in.  We use this prayer book at dinner time.  I keep it in the center of the table and ask "Who wants to say prayer tonight?".  This way we were modeling it for Kailey and she also gets to have turns at it if she wants.  It's also good modeling for Cooper when Kailey's an active part of our family activities.  We could just exclude her from this part, but we are a family.  If you can't find this prayer book you can create your own using a one message communication device.  This book is a Say-a-Prayer book titled Bless This Food made by Publications International, Ltd., P.O. Box 8092 Marshfield, WI  54449.  They also have a Bedtime Prayer book as well as others.

  

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DYCEM: (See also: www.westons.com) Get some from your occupational therapist for that wiggly child who keeps scooting out of his highchair. Cover the seat in dycem, tuck edges UNDER the chair (he may want to play with it or chew on it). Add a pummel too if needed. Use this also under plates, toys, etc... to keep them from shifting.

At a restaurant once out of highchairs try using a Butterfly Strap to keep child seated. Ask your physical or occupational therapist for more information. We have also been using a weight-lifter's belt in restaurants.

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Backyard "Therapy": It looks like any normal backyard but we had specific objectives in mind when putting it together. Try to target specific needs your child has but also add something requiring a new/different/more difficult skill. We take for granted all the benefits of playground equipment because our other kids systems integrate all that input naturally and fully.

Low to ground trampoline: Jumpking catalog. 1. independent and safe to be left alone on. 2. Can be on "equal playing ground" with others 3. GREAT proprioceptive input to help organize her neurological system. You know what that means because you've read Jean Ayres Sensory Integration and the Young Child, right??!!!!Toys-R-Us had a low one.

Hammock: 1. Organizing to the vestibular system Again, you know vestibular because you've read Jean Ayres book!! 2. Calming to the body. As a teacher I used to purchase a VERY inexpensive hammock from the Army/Navy Store $10, rolled up and fit in your pocket. You have to be careful because of possible choking hazards as there are no spread bars. You could add one.  In the classroom it worked great or inside your house where you pull it out upon your child's request for it.  No room for hammocks in the house?  They sell bars that stretch across doorway openings that can hold the weight of an adult.  Check out the FlagHouse  Special Populations catalog.(sales@flaghouse.com)  To this you can hang chair hammocks, bolsters, swings, Johnny Jump-ups, etc... which you keep stored in a closet and pull out when your child request one.  See communication section on lots of concrete and/or abstract ways to provide for that.

Fountain: 

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Swing: Great for same reasons as hammock. Changed over to same sling seat as the school used to encourage carry-over learning. She figured it out only after being "included" this year even though we played on that same playground for 2 years prior. Coincidence or peer motivation/peer modeling?......

Tree Fort: Built something up high specifically to target stair climbing. All the physical motor programming we did during the integrating her sensory systems, especially walking daily 1 mile in rough terrain (hills, fields, woods, dirt/rutted roads, stairs and crawling) helped improve her depth perception. Added lower hand rails as she felt more secure holding lower in the beginning.

Boundaries: I watched Kailey's traffic pattern for a year and then built pathways there. I was SO frustrated that I couldn't have flowers or a vegetable garden without her trampling and ruining them every year. Kailey wasn't understanding my frustrations and my anger was causing her frustration. I had to come up with a solution that pleased us both. I wanted it to look "normal". I tried green wire "fences" but she just trashed them or didn't see them and tripped over them. By giving boundaries like the path it made it clear to her/cued her where she could walk. Boundaries were also critical during therapy session when younger. We put bolsters in a square to define her space. Other structured play times I pulled out a blanket that we sat on during it. When finished we put it away. It marked the activity with a physical object and helped her to focus better.

The Tripp Trapp Chair is a great piece of furniture to provide boundries with.  See Kitchen section. 

Backyard fence: Entirely fenced in with a lock. This year she's attempted to climb one fence so I'm using the boundaries concept and planting tons of climbing vines on the fence. I think being covered in leaves will create a wall to her and she'll stop......We'll see.  Also a good swat on the bottom!!!!

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Make a list of the activities you know will be pleasurable to do as a family. Writing things down really help.  But also take time alone with your other children, minus your angel,  to do special things. What are your AS child's strengths and where can you best use them? What are 1 or 2 things you can always do as a family and walk away feeling it went rather well? For us the jogger was an  immediate success, the bike took adapting and training runs to teach holding on and less jiggling. Now it's a favorite! Our bikes have changed over time but both these activities continue to be favorites of Kailey's.

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The Jogger: Gerry Double Rollerbaby - TRI Industries Inc. 1-800-242-6110.
See also: The Baby Jogger Company  The one shown here is a Special Needs III Jogger  They are wonderful at helping specialize it especially for your child.  It does recline back MUCH more than the regular baby jogger.  They will work with you or your therapists on any special needs.  The III version transports up to teenage size, max. weight 150#.  The II version from 6 weeks to 4 yrs. Max. weight 75#.  For many years when Cooper was a baby, we used a Gerry Double Rollerbaby jogger  (1-800-242-6110 TRI Industries Inc.).

Special Needs II Baby Jogger

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Bikes: Adams Trail-A-Bike 1-800-265-9815 These are becoming more popular. Saw it at Pace Club in Colorado for much cheaper than what we paid.

Several adaptations we made:

1. Foot pedals with straps.
2. Put an old set of upright handlebars in instead of the straight across one that it came with.
3. Added kick stand for better stability when getting her in/out.
4. Bought Linkswitch from  Adaptivation  (see catalog page) and had them put a "c" instead of "a" traction pad in with it. This we will wrap around the handle and run it to the Linkswitch box in a pouch behind my seat. It will be plugged into an adapted am/fm radio. When she holds onto the bar she'll be touching the pad. This will turn the radio on. If she lets go the music stops. This is our attempt to teach her to hold on at all times because as she gets bigger any jiggling around will only get harder for us to control the bike.

Other Bike Information: Worksman Trading Corp. 1-800-962-BIKE (2453), Trailmate 1-800-777-1034 Triad Rehab., Rifton, and Haverich.  And the  Quadracycle (219-488-2983).

After Kailey got too big for the Trail-A-Bike, I wanted to go with a side-by-side bike so that we could go long distances and Kailey could sit and relax comfortably when tired of pedaling.  Our first attempt was with the Worksman bike (below left) and it was a huge mistake.  Let me say here, an Angelman family recommended it to me and their family has loved it tremendously.  I felt it sat terribly uncomfortably, was so heavy my son and I had to get out to push it up a slight hill (has 3 speeds but you couldn't tell it), and after being promised by the company it would fit Kailey's size; it didn't.  Not too mention I had to find a company to ship it back to them totally at my cost.  We just bought the Quadracycle (below right) and absolutely love it.  It is so lightweight I single-handedly pedaled Kailey and Cooper around our block and up hills.  It has 18 speeds, sits great, seat slide all the way up to fit Kailey and back to fit me.  Tom could never drive it as his knees would hit the steering wheel but that seems to be the only drawback.  Plus the neighborhood kids LOVE it!!!  It does not pedal backwards so you Flintstone it!  Has a good turning radius, turns city blocks fine.  Just about the exact same size as our sidewalk.  Good for road and bike path!  Now we can even take a cooler on rides.  It brakes with a center brake bar.  Each pedaler has it's own speed gears.  As you can see I LOVE it!     

     

Worksman bike                      Rifton                  Quadracycle

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Swimming: Safe T. Seal from Toys-R-Us or call 1-800-581-6229. You step into it and tighten up the stretchable straps that criss-cross on the side of the torso.  Combined with arm Water Wings, Kailey can be completely independent in the water. Life jackets dunked her under water.   **I'm told this year at school Kailey doesn't use anything!!!! 

Stores also sell nice banded headbands to protect the ears if that's a problem. It's a tight spandex-like material which may be tolerated better if hypersensitive in the head area.

We just bought Kailey a wet suit. She is discovering her body and is spending all her time in the swim suit trying to take it off or move it over to explore which is a behavior I don't want to encourage in a social situation. Also scooting on her bottom at the beach puts a lot of sand in her and it drives her crazy. The wet suit idea I think will solve both these problems. We also thought this would be a great idea for those kids with temperature regulation problems. Lake Michigan is VERY cold most of the summer. Some use just a swim belt. Kailey did O.K. with this.

See also: Floating Swimwear

Info from Rita in Memphis:
For those of you interested, Abilitations 1-800-850-8602, or
www.abilitations.com
offers a pool pant diaper for big kids and adults.  The small youth is for
50-75 lbs.,
med. 75-100 lbs. ($19.95 ea.)
The small adult fits waist 24-30", Med. 30-36", Large 36-41" ($27.95).

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Roller Skates: Kailey loves the Playschool ones. I never thought she'd be able to use these but tried them on a whim. She does pretty good/basically walking in them but because the neighborhood kids are on them she can too now and she likes that!

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Discovery Zones/Chuck E. Cheese: Wonderful therapy for our kids bodies!

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Fun Runs: Do the 1/2 mile runs as a family or regional group and hand out A.S. informational fliers. You may be helping another family find a diagnoses.

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Finances: Prioritize on a list items you would like to have. Then find the resources for them ONE AT A TIME.

You can:

• Combine family gifts during child's birthday and Christmas towards one big purchase
• Approach VFW or charity type groups
• Request your anniversary and/or birthday gifts be geared toward such things as massage a months baby-sitting cost, etc.
• Area Rehabilitation Hospitals tend to have toy lending libraries to try toys, switches, etc. out on.
• Contact the Lekotek Foundation in your state (see catalog pg.) re: toy lending libraries.
• Have a list of adaptive toys/communication devices and the catalogs they can be ordered from for family members wanting to buy a birthday or Christmas gift. They can then combine with someone else if they wish.
• Hire a neighborhood 9 year old girl to play in the backyard with your child for 2 hours three times per week. Costs next to nothing, you can get something accomplished, sibling isn't acting as sitter, you're still available in emergency, and you're training a possible future sitter!! Try using this idea during high stress times like dinner preparation.
• Utilize home schooled families. Contact a local organization or state. These families like to emphasize volunteerism, training for their children by acting as mother's helpers.....My friend's child gets "paid" periodically in old jewelry for dress up, pizza night with their family, other non-monetary ways.

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Sensory Integration

It is not some secret mysterious new technique or therapy, however it's often talked about that way. Sensory Integration (S.I.) is how we all learn to learn and make sense of this world and our bodies. It is all of our sensory systems (visual, auditory, tactile, smell, vestibular, proprioceptive, etc...) working together smoothly to interpret and respond to the stimulus around us. You MUST have a basic understanding of how the body learns and the "why's" behind your child's behaviors. There are always reasons for behavior and we have to have some base knowledge so that we can more accurately interpret their behaviors. Please, please read and become knowledgeable in this area so you can better foster growth for your child's sensory needs throughout his entire day instead of depending on a 1/2 hour therapy session to do it for you. We tend to view "therapy" as an isolated event. Incorporate it in everyday life....Backyard play equipment, games you target to play, prior to or during an activity at school, outline your neighborhood and see how best to utilize it. See Book Recommendations sheet re: Jean Ayres book. Call and get on mailing lists for any workshops, training sessions, S.I. workshops,etc... through the Speech, Physical,& Occupational Therapists Groups, your local school for the Severely Multiply Impaired (SXI), your districts Special Ed. Dept. or Regional Dept., the Assoc. for Retarded Citizens (ARC), local colleges Sp. Ed. & Therapy Programs bring in speakers.

For additional information about Sensory Integration, see:

• Sensory Integration International, The Ayres Clinic
• "Sensory Integration" by Cindy Hatch-Rasmussen
• Sensory Integration Network

When reading "Dancing in the Rain" disregard the diagnoses of the kids. Know that there is a continuum of neurological impairment ranging on the mild end with kids labeled Borderline L.D./A.D.D./P.D.D, etc.. to the more extreme end with labels like Autism/Severely Brain Injured... but all these children & all in between share the same thing....Neurological impairment to varying degrees and varying areas of involvement. THE LABELS DO NOT DEFINE THAT INVOLVEMENT. You need to look at YOUR child NOT his label (A.S.) when evaluating whether Auditory Integration Therapy or what particular forms of Sensory Integration techniques or other therapies would be helpful.

I approach Kailey and all children by this concept...."Treat the brain or the body FIRST!" Once you do this, learning can occur naturally and progress in meaningful and lasting ways. You still have to address the symptoms in the interim but your goal is to treat the brain/body. There is not ONE SOLUTION or FIX. By researching many different approaches and therapies and tailoring your path according to YOUR CHILD'S needs, I feel the most progress will occur.

After therapies (horseback riding, swimming, physical therapy,.....) when your child's body is in the state you want it, USE THAT TIME AFTERWARDS to benefit your child and provide better learning, provide success and build on skills. Use it in a functional way.

Example #1 - Horseback riding is usually calming and helps child to attend better. Directly after is when you may want to attempt reading books, do rough terrain walking or a task that requires better focus/calmer body. That way the child experiences how it feels to do that activity in the correct body state and with better success.

Example #2 - Kailey would get all stretched out in P.T. as her hips and pelvis were so tight from fixating there when she walked. That's how she stabilized herself. Directly after I would do lots of walking with her so she could learn how to control her body and walk without fixating in the pelvis. Don't just stretch and leave it.......use it.

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Learn to Recognize Signs of Over-stimulation: Example - Excessive giggling can be a sign of over-stimulation, pupil dilation, excessive use of deep vibration can precipitate seizures. I allow Kailey to give herself the amount of vibration she wants and where she wants it. I don't force it on her. We had a "Bumble Ball" which she absolutely LOVED! She put it in her mouth however and I was very uncomfortable with the power and intensity of the vibration to the head. We don't use it. They do make a smaller version now that may be less powerful. Talk with YOUR therapist. Also on the trampoline I give support & pressure to the trunk and stabilize the head/neck when bouncing somewhat high. This is very calming and gives good input rather than wildly jumping, excessively hard and over-stimulating her system.

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Some random ideas:

Playroom Swing:  We hung this and can interchange it with other equipment.  Kailey NEVER naps but the swing does it for her when she's tired enough!  She loves this and it's year round movement.  She's still physically unsteady on things like bolster roll swings and being flat on her stomach swinging so we may try to interchange it with something that will help with that.  

The use of weights: weight stabilizes, calms, gives security, and helps organize a sensitive system. Try weighted vests. Kailey uses one at school. Make a cool looking vest rather than a therapeutical looking one.  Go to the magazine section and click on The Therapy Shoppe site or Tripp Trapp link.  Come to find out, this place is right in our town and I never heard of it until searching when setting up this site.  I'll be checking them out right when I return from Finland!

Heavy quilts or weighted blankets on bed. Many of our kids do this for themselves already by putting pillows/blankets over their heads.

Watch your children. Become great observers and questioners. Their bodies will crave the stimulation they need. We need to recognize it and provide them with it. You can do that by learning about Sensory Integration.

Push weighted walking toys when learning to walk or for older walking kids push heavy objects like stroller with kids in it, lawn mower (turned off!).

Play "hot dog" by rolling child up in blanket, putting on toppings, and eating him! The log rolling is good vestibular movement and helps with balance and stability. The warmth and tightness is calming just like swaddling an infant is calming to an immature neurological system.

Vibration objects such as Aquamassager, vibr. pillows, vibr. wiggle pens, vibr. toothbrushes, etc.. Chewing and Mouthing of objects: Have a specific basket filled with items child is ALLOWED to chew on. Use this at key times. Provide lots of oral stimulation to MEET HIS NEED to chew. Talk with your therapist about specifics. Get into his mouth as often as you can. Make it into games, song games, etc.. When I was in Kailey's mouth 15 times a day her sensitivity level went WAY DOWN. Of course I didn't keep it up forever and she reverted back. Allow vibration play in the mouth area. The aquamassager is drool proof and safe. Use a theraband necklace or a pacifier holder with an age appropriate sticker on it to have readily available an object they're allowed to chew. Put an age appropriate toy or object on the pacifier holder for social situations. Kailey uses the Movin's it Jr. Wedge (see your O.T.) at school to give good seating position, movement in her seat without getting up, and tactile input.

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A FEW TIPS:

1. To release a fisted hand pulling your hair.......DO NOT TRY TO PRY FINGERS APART OR PULL ARM AWAY: THE GRIP USUALLY TIGHTENS. INSTEAD: grab wrist and with thumb firmly press top of the hand down causing the wrist to flex (bend). Fingers automatically open.
2. Hair cuts: Try the hair vacuum sold on television. one family on-line uses this, distract w/ tape or vibrating toy or whatever while holding from behind. We tape Kailey's bangs to keep straight, give her a wad of tape to hold, sit on the stairs with dad holding arms and body with one arm & leg and chin/head with his chest and other hand. I also used to cut her length in the tub. She played with the running water and I'd wet and snip. Usually came out straight! Try bangs LAST as your child may be very hypersensitive and encroaching into his "space" may throw him in a fit.
3. Ball Box: Local McDonalds Manager ordered these for me after getting o.k. from main office. Described the "therapeutic" use to him. 1,000 balls (500 for $60 and no shipping. or tax). We had it in 3 days!! Play pens work great. Tents are uncomfortable with the balls. Put them in empty or full pool and full tub.
4. Jewelry: You can add breakaway latches as the clasp. Also I find at Toys-R-Us in the Party Favors Section these stick on nail decals. These attach on for earrings great and STAY THERE unlike the ones made for earrings.

            ball box

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Back Problems - YOURS!

Work with your therapists regarding your specific situation/wheelchair/back problems. But here are a few ideas.

Practice sound lifting techniques:

1. Bend at the knees
2. Lift using your legs not your back
3. Keep the object/person close to your
4. Lift upright NOT bent over
5. Don't lift and twist.

Things you can do to help:

• Stretch YOUR body regularly. A health club or YMCA with day care gives you baby-sitting and could be a great gift from someone! Strengthen stomach and back muscles.
• Raise your rear view mirror up higher so you have to sit upright with good posture in the car.
• Make a towel roll, lay flat on floor w/ roll the length of your spine, arms out to the side, legs bent 90 degrees on a chair seat, and let gravity pull your shoulders and muscles back towards the floor.
• Think through lifting situations in your life. Pick a couple to target first. We all carry our kids at times (Big or Small) even though we know we're not suppose to. I'm a parent talking here NOT a back specialist so I'll be realistic. We can't set our houses and cars up with lifting tracks but we can try to decrease the risks to our backs. It would be worse to seriously hurt your back and still have your child climbing on you.

Some common areas:

1. Getting into car seats - try a step stool kept in car. Put outside and have child independently climb into seat.
2. Shopping Carts: As child gets bigger ASK FOR HELP from anyone around! Also the grocery store main company gave us a small version cart (like in pharmacies) so Kailey can walk and still manage to push and control it.
3. In & Out of wheelchairs and strollers: Have therapists show you. I can't describe here all the ways and situations. Some it's best from the side, some from the front. Really wild bodies keep this rule in mind: FLEXION BREAKS UP EXTENSION. Keep body flexed (bent) and close to your body when transferring. When Kailey starts extending (stiffening out) and pushing back at me when sitting on the floor together, I start flexing body parts; usually the head first then the legs. I get her in an Indian sit and get back control. This prevents added strain on my back. Incorporate deep pressure to the joints during these situations to calm and control as well.
4. Beds, highchairs: Don't lift and twist here. Be very conscious in these situations and teach independence. Brainstorm and walk through a better way.
5. Down and up the stairs: Teach scooting down the stairs. Do it side by side with child. Now sometimes I'll step down a few stairs and she's learned to piggyback me. I did this sitting until she learned to keep a calm body. This may not be the best or safest form of carrying but if I'm going to carry this is less strain FOR ME. Teach crawling up. Add a lower railing for little ones to hold onto. Hold child at hips and give deep pressure down to help give stability and calmness to the body.
6. Child pulling away and dropping to the ground: This puts a lot of strain on our bodies. Try guiding child at the hips or shoulders/chest instead of always by the hand, to prevent this constant strain on you.
7. Carrying your child then them falling backwards as a "game": This can be extremely dangerous to your back so use IMMEDIATE behavior modification technique here of putting them down immediately, a firm not game playing "no" looking directly at them. When they are calm, you can carry them again. You have to mold and teach what is allowed. Be consistent.
8. Game Playing Situations: Use outside support to assist you. With very low toned children I used blow up swim rings around the child to support them. It acted as additional hands for me. Try putting them in a large tub or box and play from and with that. Sit with your back up against a wall with child between your legs. Have a mirror in front of you so you can "read" your child's communications. Use bean bags.

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A FEW THOUGHTS ON COMMUNICATION

Babies communicate without words. We all learn how to interact with them through years of experience and upbringing. We don't think about what or how we do it, it just comes "naturally". We're comfortable with that. Upon learning that our child is "handicapped" we throw our hands up and feel that we don't "know what to do" or "how to 'teach' this 'type' of child. But the concepts and stages are the same. Language is built on a foundation of nonverbal communications. We are teaching "language" when we interact non verbally with a baby. We begin at the same point with our children. There are some basic principles and ideas that you can implement that are important building blocks to good communication skills. We want communicators NOT parrots. We communicate in a variety of ways, not just with speech and words. We need to provide our children with a wide range of ways to communicate and be ready to respond to their communication.

EVERY angel should have multiple ways to communicate and EVERY angel is capable.  All the idea's shared here can be done by the "lowest" functioning angel around.  If the idea shown is on an abstract level using pictures, you just change it to a concrete level using objects.  

Communication on a movement level. Using movements as a nonverbal "vocabulary". Having "conversations" through movement: Take any movement or vocalization and turn it into a game, an interaction. ***Do a movement,WAIT, movement cycle.***

Example: Child likes to sway. You sway side to side with the child, then PAUSE. 
Pause to give child a chance to "signal" that he wants to continue the swaying. The pause may be subtle like an eye gaze to you, his body might tense up each time you pause, or he may initiate a sway himself. 
If you do not get a "signal" wait longer as child may take longer to process and respond. WAITING seems like forever but if timed you'll see adults jump the gun SO quickly we don't give kids a chance to respond. 
If you still don't get one, Provide a cue. Start the movement of an appropriate signal or give a cue like a "gasp" then pause to cue "I'm waiting, what comes next?" 
If you get a signal, acknowledge it and resume the movement. Pause. Movement. Pause. Movement.
You can do this silently with just movements between the two of you, you can do it with nursery rhymes or songs, or with vocalizations the child makes. Take what signal the child gives you. You preferably want the signal to be a part of the movement but if child cannot perform that, take any communication he gives you and you can mold it later.

Examples: Giddy Up Horse. Signal = bouncing movement. Row, Row Boat. Signal = back and forth movement. Eensey, Weensy. Signal = maybe hands together or arms up. With songs you can sing-stop-sing-stop...looking for the child to "anticipate" the next movement and offer a chance for him to "signal" that part. Keep activities simple then later more complex. More complex could be adding two songs/movements in a row then child learning, anticipating, signaling the routine. We want to create signals so the child then has a way to communicate and request that particular game/song. Then we can build on that to a higher level of communication later with objects then pictures. LOTS of ways to expand here but this is a good starting point. Teaches a "conversation", anticipation, turn taking, that they're an active participant in a conversation not passive,their communication is relevant & important, helps build mental representations/gives a visual picture to the activity. Incorporate S. I. techniques here or therapy goals.

For information on the Picture Exchange Communication System (PECS), see the Pyramid PECS Web Page

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Introducing Objects: Use objects to represent activities, events, songs, games. The object should be an integral part of the activity, something they use or wear during it. There's meaning behind having that. Examples: cup = drink, spider ring = Eensey Weensey Spider, scrub mitts = bath time, Pin Wheel = wagon ride to park where you attach pin wheel to wagon each trip. Expand this up or down. You can start by having a Location Basket which has several objects used in eating in the basket at the eating spot, toothbrush, sponge, shampoo in basket for bath. They learn that several objects can represent one activity and provide topics for conversations/dialogue with you. Talk about what you'll do first, next, last in the basket. Before transitioning to pictures pair the picture and object together for a long period of time first, then withdraw the object. The same would hold true with written words. Use Song Baskets: Have objects that represent songs in a basket to choose from. Object is used in the song. Make baskets for different reasons: a "calming basket" when child is wound up/before bed/at school between tasks the child looses interest in or become anxious at a "sensory" basket using objects like vibration, songs where you provide deep pressure to joints (Jump rope rhymes are good here), tactile objects. Make things age appropriate by using songs, jump rope rhymes, playground chants, cartoon lyrics, etc... in these interactions.....an "excitable fun" basket, etc.... Use in Music Class with songs they repeatedly do or at Calendar Time at school.

There are all sorts of sound making magnets out there that can serve as object representations.  I find mine at Meijers, K-Marts, Target stores.  Keep your eye open for them.  

 
talking magnets                                song basket

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Begin using a Calendar Box System.

A calendar box system provides a place for dialogue to occur between the teacher and your child. It teaches many things: The concepts of first, next, last, future/past; carrying on a conversation regarding events in their day, what they did, what they would rather do; gives them a time line to their day, that there's an end to an activity especially if they don't like it! Use objects first, then paired with pictures,.... Have a way to clearly indicate finished (turning baskets or pictures over, closing a lid on the basket). Try setting it up left to right OR top to bottom. Some kids do better one way or the other. Think what it would be like to spend your entire life having people grab your hand and pull you around through the day.  You don't know where you're going, if you'll be coming back to the fun activity they just dragged you away from, you have absolutely no control.  Well, almost; you can always lay down and refuse, throw a tantrum, hit, bite, run away, etc...  And these behaviors will be what our angels will do.  But you see, they are not bad behaviors, they are our angels only way to communicate if we don't provide a way for them. EVERY BEHAVIOR IS A COMMUNICATION....!   We all have our Day Planners or a calendar of events for our days in our minds.  We understand the concept of time so we know "only an hour more of this and I get to go for a bike ride".  By using calendar boxes at school you provide ways for the child to anticipate an event, gain routines but also handle changes in routine by being pre-warned, etc....  I find that this orderly system works best in the school.  It's just not a realistic version for home as there is not the routine-ness that occurs day after day.  At home you need to incorporate others ideas to meet those needs.

We used this task box idea with Kailey for work time at school. For tasks she doesn't LOVE or want to do I put those first then follow it up with a favorite one. She knows the first WILL end and to get to what she wants she first must do the first 1 or 2 activities. To begin, we started with 1 or2 fast and simple tasks and the 3rd was her favorite activity.  Then we gradually increased the length of the first 2 tasks.   By providing a system like this you can cut down on behaviors that occur due to frustrations. As my son says "Kailey's gonna do what Kailey's gonna do"  :)  :)  Except she's got to learn that that is not going to be the case in this life.....at least not all the time!

 
calendar box   task box   box data

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Use of Communication Devices: Just a few suggestions: Incorporate lots of different devices or systems. Your child may gravitate better towards one way and it may be opposite what you or your therapists would think or would like him to use. Don't assume. Utilize inexpensive options so you can afford to have several so that they can be kept at the locations where they need to use them. Having only one device limits communication opportunities, causes frustration and confusion to your child. Teach signs and gestures that "make sense" to the word and to a total stranger. I even make up my own signs if it can better be read by others. For example: Cooking sign, I use a stirring motion because that's what we usually did in cooking. Provide ways for the child to respond to situations ("awesome man" "that's fun") or initiate a communication ("How are you today?""Do you want to play?"). No one communicates just by labeling or requesting needs. Target areas of interest first when using devices. Kailey LOVES to wrestle. That button gets used a lot more than "I have to go potty" ever did!!!! Provide lots of choices. When teaching choice making you'll want to sabotage it periodically to check that he's really making a true choice. Put a picture of something he loves and something he dislikes or doesn't make sense (a shoe for a food choice). Don't do this too often as to cause frustration or confusion. I try to view every behavior as a communication FIRST. Especially important for aides/teachers to do this. We SO OFTEN claim a child is misbehaving and is "bad" when he's really trying to communicate something and WE'RE missing it. Try a Yak Bak on a wrist band as a portable lightweight device. Find the one with the lock button so the message can't be erased. Use communication systems out in the community on a regular basis. Target a local spot you can visit regularly and use it there. Be creative and practical as to what form of communication tool you would use in that situation. Child needs to have a way they can get someone's attention when they're trying to communicate something to them. Observe your child and find an appropriate way for them to do this. Kailey vocalizes a specific sound. We modeled it especially on car rides as a way to "call" me. I still cue her at times to "call" whoever. The BigMac has a loud volume so we hear it wherever we are. Her communication gets reinforced even when not seen.

communication devices

See also:

http://www.gusinc.com
http://www.sentient-sys.com
http://www.attainment-inc.com
http://intellitools.com
http://www.edmark.com
http://www.prentrom.com
http://www.zygo.com
http://www.laureatelearning.com
http://www.education.com
http://www.mayerjohnson.com
http://www.rjcooper.com

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A Few Invaluable Items: Laminator: EL-12 Ibico laminator available at Office Depot. Order 10 mil laminate from company (not available in stores) 1-800-600-0064 Arvey Paper & Office Products. I use order #58510 letter size $59.05 + $5 UPS charge. Have used legal size when making game boards for Cooper or long communication boards. Use 7 mil setting when doing photos so it won't melt print. Experiment. Make sure laminator has a 10 mil heat setting. At least able to do a 8 1/2 x 11 size too. A paper cutter and a corner cutter: Time saver and hand saver! The corners MUST be rounded when using 10 mil as it's extremely sharp & hard. The Digital Camera: Not a necessary thing especially since Color Copiers are so available now. Color Copiers should be your best friend from now on!!!

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Laminating Tips

(In Michigan we raised money and bought all families a laminator. That is how crucial I feel this piece of equipment is for EVERY Angelman child!! We bought the EL-12 Ibico laminator that has separate temperature settings for 3 mil., 5 mil., 7 mil. and 10 mil settings. I went through a distributor and they gave us a big discounted price on them and also waived the shipping fee. All the laminators came to my house and I distributed them to families at our summer picnic meeting. This was the hand-out that I gave with each laminator)

BEGIN WITH WHAT YOUR CHILD LOVES THE MOST OR AS ONE SPEAKER SAID "The to die for thing".

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Cheap Talk: Enabling Devices Kitchen or Office Minder: Allied Voice Tech. 1-516-777-7096 33 Dubon Ct. Farmingdale, NY 11735 $25 Attn: Mary Ellen. Or look for them at Office Depot, Office Max, or Target. I got them for $10 on sale. BIGMac: Able Net Inc. Taction Pads and LinkSwitch: Adaptivation Inc.

 

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