December 30, 2018
This post was started sometime in 2016 and left alone as a draft. The recent experiences with Orion immediately enjoying some new toys this month reminded me of this older post I started. Here I am, finishing it and hoping it offers ideas and insight to other people with a DeafBlind loved one in their lives.
Orion moves the beads on an abacus (by Melissa & Doug). Photo by Heather Withrow. |
Disclaimer #1: When you've met one DeafBlind child; you've just met ONE DeafBlind child. On top of unique personal preferences, every child has different etiologies of deafblindness, may have additional disabilities, health issues, communication, school and family backgrounds that may influence their level of interaction and progress with people and toys.
Orion currently does not have usable hearing and as a Deaf parent, I give more weight to tactile, vibro-tactile and functional features when considering items for Orion.
About Orion
Orion's white hair is highlighted in the sunshine, November 2018. Photo by Heather Withrow |
Forever #1 on top of the list: Orion's and any other DeafBlind child's favorite playthings are their family members!
Orion (almost 2) and big sister, A (6), sit together in her classroom. It was Kindergarten Graduation Day at Glenn Dale E.S. (MD). Photo by Heather Withrow, June 2012. |
Orion's big brother, S, pulls him around the house on a blanket.
Orion is around 3 to 4 years old in this photo.
Photo by Heather Withrow
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Orion's dad, Thomas, and I participated in a series of interaction trainings with TSBVI DeafBlind outreach staff (Chris Montgomery & Deanna Peterson) during the 2017-2018 school year. The priceless insight we gained from these trainings not only benefitted us but also Orion's interveners when we shared discoveries, tips and cues to watch for with Orion. We realized that any adult may initiate turn-taking interactions with Orion, he will determine if your topic is of interest to him and respond back. That may be the "easy stuff", however, if Orion playfully invites you to interact with him, that's the golden stuff right there... and please respond to him!
Some 'How-Tos' for Interacting with Orion
- Tactually inform Orion of your presence (initially contact a knee or his lower arm near elbow, if interested, Orion will bring his hand to find yours).
- Mirror Orion's actions respectfully.
- This lets him know you're there.
- He may be amused you're connecting with him at his level (a.k.a. his "topic").
- You might answer your own question of "Why does he like doing that movement?"
- Have a hand touch on his shoulder or leg, in a way to let him know you're watching him or are present. (I go ahead and use my index and middle finger as "watching eyes" touching his shoulder. This tactile impression of the handshape is ProTactileASL used for communicating that I am watching the person I am touching. Orion doesn't understand the sign itself but he knows I'm there. That's the important part. Read more about ProTactile in the Fall 2017 issue of Texas SenseAbilities.)
- Take notes on particular deliberate hand/arm movements in case he initiates those moments out of context (when he's away from the toy or playroom).
- Accept Orion's invitations to play with him.
- Affirm/respond to Orion's deliberate movements, sign-babbling, and approximate signs.
- It would be a good idea to have a duplicate object of whatever he is playing with... you never know he's not going to share. He may notice you playing with it similarly or differently. On top of that, he's going to notice similar characteristics between the two objects.
Orion will push people away with his hands. We think there are two different purposes for this action, depending on the context. First, he may need some space. Observe and wait until either he comes to you or after a while you can try again to make contact. Sometimes Orion would take a quick sweep of the area with his hands to see if you're actually still around and goes back to playing. The second and most recent realization is that he's pushing you (or if he's sitting in a chair, dragging you behind him) to go get something or more of something (that we have to try and figure out 'checklist' style).
Playing Independently
Now, for the times that no one is available to interact with Orion, we hope he would enjoy playing with toys/playthings independently.The cool thing about not always "entertaining" Orion ourselves is that when Orion can settle down and play by himself, he's playing at his own pace, giving himself time to process what he thinks and tactually feels at his developmental and emotional level, he can actively play
As Orion is developing, learning and figuring out new skills and actually manipulating playthings- he's learning to play at his own will, what his hands discover and the changes he is able to cause.
Various Ways to Look at Toys
- Open-ended versus single-purpose
- Healthy Tactile/Sensory Diet
- Real is preferred over "junk" playthings. Real objects are self-explanatory, expandable and great for scaffolding concept development, building ideas on top of existing observations and knowledge.
- The rate of information input through our skin is slower than would be through distance senses of sight and sound. We want to make sure that time is spent on quality, rather than junk- things that are fake, plasticky, miniature, thus confusing and misleading.
- I learned the term "sensory diet" from a discussion by David Brown (who didn't take credit for that term), with the focus on input for sensory needs, a.k.a sensory nutrition (not about toys) in a Perkins School for the Blind webcast on CHARGE Syndrome: Sensory Processing. Brown also discusses the vestibular and proprioceptive senses in this webcast.
- Extra: Read more about "Sensory Diet" and activities directly benefitting sensory needs.
- FUN above all!
- Available for independent Active Learning
- Anyone can play!
- Many thanks to the late Dr. Lilli Nielsen for the attention on playing (a.k.a. learning!) There's a new collaborative website on this topic: http://www.activelearningspace.org. I highly recommend this website and going to Active Learning workshops near you.
2-year-old Orion in an Active Learning "little room" loaned from TSBVI Outreach. Photo by Heather Withrow. |
Forgotten/Unconventional Playthings
There were no Toys'R'Us monolith stores in the 19th Century! Imagine what children did for play back then. I think it's safe to assume everyone had fun playthings to spend time with and they turned out all right.Orion smiles and holds Mom's pink discus on his belly. (He appears to be around 3 or 4 years old in this photo.) Photo by Heather Withrow. |
- carpet samples
- eggshell foam mattress toppers
- plush blankets
- boxes (All kinds! Metal, plastic, cardboard, wicker goes!)
- stickers
- masking tape
- sticky lint-removing rollers
- large plastic information labels that you peel cleanly off a plastic product (after purchasing it from a store)
- sticks
- hula hoops
- white mobility canes (kid height)
- branches (trimmed down, of course)
- Yardsticks/rubbery rulers
- sand
- river rocks
- beans
- rice
- very stretchy headbands or exercise resistance bands
- nylon stockings pulled/stretched over a large loop or racquet-like frame
- brushes
- metal bowls & utensils
- racquetball racquet
- kitty tunnel
- empty cardboard box
- yoga ball (There is a type of yoga ball with a weighted sack inside it so it doesn't roll away).
- balloons
- discus
Did you notice that you wouldn't have to go to a toy store for the items in the list above?
For Orion, simpler is better, less confusing and frustrating, more fun and easier to manipulate.
Orion put himself in this narrow and crinkly kitty tunnel at his grandparents' home. Photo by Heather Withrow, August 2016. |
More Activities Orion Enjoys Independently
- He loves dumping the box of youth size 1 shoes (his current shoe size at 8 years old) near his playroom doorway and deliberately picking a matching pair of shoes to hold in each hand. Note: He will take any size shoes, whether there's still feet in it or not.
- Dumping any boxes' contents, really! I have differently textured boxes of themed contents: music hand instruments; things of six (think braille!); balls; kitchen bowls/utensils; bristle blocks; push and play/vibrate thingamajigs...
- He played in the cat tunnel more than his grandparents' cats ever did.
- He enjoys the sky hammock chair his grandparents gave him for his 6th birthday.
- He enjoys the catch scratch arch as much as our own cats but in his own way.
- A length of lycra knotted together at the ends make a great stretchy swing/body sock.
- Spinning around on the platform swing
Orion works to find the right lounging position in the hammock swing. Photo by Heather Withrow, January 2017. |
Independent Play as an Infant and Toddler
When Orion was a baby through to around 2 years old, he enjoyed time in his infant play gym that was placed within the safe walls of an empty, round inflatable kiddie pool. Tactually interesting objects were hung from the play gym. Toys were kept from rolling away out of reach by the swimming pool walls.Some toys in that little play gym, first introduced when Orion was around three months old, included a plastic brush, comb, baby links (tactile features), pull and release toys (that admittedly were ignored by him), metal measuring spoons and cups, small and large wiffle balls, pom-poms, and spoons (metal, plastic, wood). (Other ideas I learned of and used later or did not have the chance to use: metal chains, whisks, pie tins, heavy bead strings... and I welcome opportunities to add more to this collection of ideas. Sources for these ideas came from Active Learning and fellow mommy bloggers.)
When Orion was a toddler and by that time he had better midline head control, I remember him sitting up and accepting leaning somewhat forward on a large plastic musical ball-popping toy and staying there without throwing himself backward in protest.
When we moved to Austin, Texas when Orion was two years old, he was comfortable enough to scoot his way out of the dry kiddie pool. The pool was also a safe place for Orion to practice sitting up as he'd land on the inflated sides or on the pillows, lush sheepskin and memory foam mat within the pool. Easier to bubble-wrap his environment than the kid himself! Even with all that protection, we were hovering over him ready to save him until one day nobody was there to stop him from falling backwards from his seated position. The blessing went way beyond the fact he was not hurt, to him realizing he needed a safer way to get down from his floor-sitting position. And soon he did figure that out.
Then there's floor mats. Alphabet squares, differently textured and colored squares, memory foam mats for standing in the garage and kitchen and so on. That same first year in Austin, a thoughtful neighbor gifted Orion a package of floor mat squares. (Thanks J.P.!)
Activities and Playthings 8-year-old Orion is Lukewarm Toward (or Plays with Occasionally)
Many of these toys he is just content to dump them out of the box they're in at least once a day. He's been doing them for years! For example, on Monday after school he would scoot on his back by these boxes where they sit on the shelves, dumping them as soon as he's able to touch them. Later that night, I'd clean it up and then on Tuesday he does the same thing all over again and so on. At least he KNOWS where the stuff came from, the next thing is to PUT them back which is important for concept development
- Braille, print and ASL alphabet blocks (The first gift we ever received that was related to Orion as a DeafBlind baby. I was heart-touched then bawled! Thanks L.R.!)
- Baby Piano
- Bristle Blocks
- Legos
- Musical instruments
- Giggly Wiggly ball
- Resonance Board
- Swivel board (homemade project by Mom using a 12" lazy Susan swivel ring)
- Wood platform swing made by Mom
- Foam outlines of shapes (What we have is older, I'm not seeing it on the Internet.)
- Kinderboard (Curved wood board)
- Spin Again (Colorful discs that spin down a spiral-ridged stick)
- Activity board (Pegboard mounted onto a wall. Interaction with this is at the mercy of affixing items of actual interest to Orion and friends. Currently one of the cats likes it more!)
- Box of different kinds of locks (latches, clasps, locks)
Commercially Available Toys/Playthings that Orion has Shown Interest in
Orion touches the sequins on Happy the Hedgehog. Photo by Heather Withrow, December 2018. |
The blurry-looking toy Orion is holding is a Dimpl Duo. Photo by Heather Withrow, December 30, 2018. |
He would play with toys in the way it was designed for, or in
- NEW: Happy the Hedgehog by Faber-Castell (A hedgehog toy with reversible sequins on it's back. Has weighted material in its base.)
- NEW: Dimpl Duo by Fat Brain Toy Co. (Has two rows of three silicone "domes" that you can push inward and pop back up from the other side. It happens to be labeled in braille for colors and shapes but I snapped this up due to the fact it was similar to a braille cell, depending on how you held it.)
- Child pod swing (looks like a tear-drop hung from the ceiling and has an inflatable base. )
- SubPac (A "backpack" boom box designed to be attached to a chair back, appears to boom-boom the lower frequencies. This is a great way for Orion to feel 80's music. I created a video of Orion enjoying it with his intervener.)
- Squigz (Discontinued! Orion chews on them and is determined to thwock any suckers off the bathtub sides and any that I stick onto him. Some are stuck good to the tub and Orion will reposition himself to get better leverage to pull them off! The downside is that Orion likes to chew on them, too, a safety concern.)
- Metal Pin Art (Metal pins that move when you push your hand or face on it, the other side moves and is a copy of your features. Metal is better than plastic as metal is conductive of the temperature of the space it is in and it has a heavier weight that our proprioceptors appreciate.)
- Baby snap-beads by Fisher-Price (Orion enjoys taking them apart one by one. My thought is that in order to put things together, you got to experience it "whole" and then take it apart. This includes experimenting with the parts, learning about what else it does.)
- Books (braille, tactile, or
sighted-onlyempty books) He would feel the books... then start to rip it apart! Even the board books! - Wire head massager thingmajig (You'll have to bend it's 'tentacles' back in place after he enjoys it his way.)
- Slinky
- Pop toobs (Crinkles as you stretch or contract the tube.)
- Neck massager with heat (He would hold onto it on his chest and relax his hands, his fingers rising and lowering underneath the turning parts.)
- Gripbell (A kettlebell-dumbell combo at different weight intervals. It is enclosed in a silicone-like material. Orion enjoys the pressure from the weight and the challenge of trying to move them around.)
The Rejects
Orion may briefly touch an object given to him and put it aside.
*Blink-blink* goes Mom and Dad's eyes.
"I don't think he felt that one right."
We try giving it to him again. The kid touches-it-then-puts-it-down.
Mom and Dad try again. The kid touches-then-tosses-that-annoying-thing-in-the-opposite-direction!
There may be several factors why Orion or your kid would not want to play with something. He may just prefer to interact with you. It may be an internal issue (sick, congested, hungry, tired, wet) or an external issue (cold/hot out, too many people, overwhelmed and not given enough time to process their experiences.). The toy may be too abstract, complicated, or baffling. In any of these cases, I would reserve these toys for a day in the future when Orion would be ready to try again, explore the object at their own pace and in their own way.
Also, the toy may be in a material that your child doesn't enjoy. I'm a huge fan of the "Likes and Dislikes" form on Washington Sensory Disabilities Services's website that keeps track of sensory characteristics to look for and to avoid. A .pdf of the blank list is available here. You can always return to your child's list to find sources of motivation for your child.
Orion's perennial plaything dislikes:
- Stuffed toy animals (except for Happy Hedgehog!) They're so cute but he wants to be cuddling in their faux fur instead.
- Our pet cats. Thankfully, Orion does not want to wear their fur. Our white German Shepherd puppy, Aiko, is persistent, still learning to be careful and I think she will eventually win Orion's heart.
Orion can be particular about some textures' "sub-categories".
- He would enjoy a plush blanket; however, if it were a stuffed animal, then no.
- He would enjoy stickers and large sticky sheets; but he hates sticky food that gets all over.
Other examples of rejects, many I will hoard sit on for that "one day" as long as space permits:
- Fisher-Price Record Player
- Bead on wire toys
- Jack-In-The-Box
- Large vinyl-covered foam shapes (for sliding, climbing foam-shaped stairs, etc.)
- Large inflatable pool rocker
- Flat floor scooter with wheels (used in elementary P.E. classes)
Objects he played with but is no longer even interested in:
- Squishy textured balls
- The HOPSAdress (It may actually be an issue of needing the next size up for Orion.)
- Body sock (The lycra of Orion's second and bigger body sock may be too stiff or the velcro on it bothers Orion. Orion enjoyed the first and smaller one. Makes me wonder...)
Mom's Wishlist for Orion to Try
Some things on this list of cool stuff I want to try with him may be a hit or a miss. Orion has an Amazon.com Wish List that I occasionally update with toys I want to try with him.
The upside of these "misses" is that Orion's siblings and other children would enjoy them anyway. Pretty awesome ideas, though, right?!
- 80' zip line kit and add a HOPSAdress or chest harness to it. Call it an outdoors ceiling track so he could "wander safely in the backyard"? I know the zip-line will sag and be low in the center. Should be interesting to see what Orion does.
- Any riding toy Orion can "slither" onto and make it move. (Can I dream? Can I just try? I have a closet of more rejected "rollers"! I have also learned that ideally, riding and push toys are usable by kids who are walking. If anyone's kid defies that idea, please message me!)
- Large, powerful industrial fan (rigged to be safe for Orion's prying fingers), something to "blow" him away. A personal wind tunnel?
- Outdoor canopy (Large enough to cover an outdoor play area so he doesn't get sunburnt if we miss a spot. Should be able to withstand the Texas weather extremes.)
- Indoor rock climbing wall in the garage with crash mat and an Orion-sized cubby for him to climb up to and hang out in. (Or a lifetime pass to Crux Climbing Center in Austin.)
Orion, with his intervener Nanette, considers his options for reaching a platform in the wall. Crux Climbing Center, Austin, TX. Photo by Heather Withrow. |
The upside of these "misses" is that Orion's siblings and other children would enjoy them anyway. Pretty awesome ideas, though, right?!
Toy Lists From Sites Focusing on Children who are DeafBlind, Blind/Visually Impaired and/or have Disabilities:
I've pored over lists of commercially available toys and products for ideas. It feels challenging to find the right toys for someone who is DeafBlind, not walking yet, but when I do find something, you bet I'm going to try it. There are so many toy and gift ideas for children with disabilities through these links:Family Connect: http://www.familyconnect.org/info/after-the-diagnosis/helpful-products/gift-ideas-for-parents-of-children-who-are-blind-or-visually-impaired/125?platform=hootsuite The stuff here can be fascinating for any child. I ordered something for Orion's big brother from this list.
Able Play Toy Guide by Lekotek: https://www.lekotek.org/images/stories/files/pdf/ableplay_toyguide_FINAL_web.pdf
(I found their catalog categories of "Sensory" and "Physical" more meaningful for ideas for Orion.
Hold On" (https://www.slideshare.net/teechkidz/hold-on-by-ohio-center-for-deafblind) When Orion was around one and a half year old, I made for him something similar to the play smock seen on slide 9.
Two more Amazon Idea Lists I created and will continue to add to: New Movers and For Young DeafBlind Children. (Please consult with your child's service providers for developmental and physical appropriateness and safety.)
If you know a resource available via Internet link that you do not see here, please let me know, I'll be happy to add them.
A Mom's Musings
Nope.Orion could come around and contradict everything I've discussed here!
Your DeafBlind child is very likely to have different likes and dislikes from Orion's, too. If you're a family member thinking about gifts, consider likes/dislikes, developmental level being appropriate for enjoyment, accessibility, pretty much everything I discussed already. Playing independently is great but that's just part of the big picture. Our kids need respectful, responsible and fun human interactions to continue to develop, learn and be motivated about what's at and beyond their fingertips.
Let this be food for thought. A complicated, elaborate and worthwhile scheme over making sure someone is listening and constructively responsive and something is accessible and enjoyable for DeafBlind children as they're kids, too!
And now back to toy-testing with Orion...