The “Right” Fidgets

This has been a big summer for us. It is the summer we finally found fidgets that work for Beth. They were not the standard variety though. I want my money back for all the sensory balls, toys, weighted this or that, and junk I have bought over the years (if you are reading this post and think, I wonder if she tried…the answer is yes). Finally, we found two things that actually work:

1. Bead Necklaces to Reduce Flapping on Outings

Why do I care about flapping on outings? Because she flaps and looks at her hands and does not tune into her surroundings when we are out. She can’t safely cross a street or learn about her surroundings and communicate with others when she flaps and looks at her hands so often. Why does she flap?  As far as I can tell it is many reasons…happiness, anxiety (often due to noise), frustration, and boredom seem to be common triggers. Flapping in cooler weather was not an issue because coats seem to calm the flap (see http://wp.me/p2OomI-1gf). But when the coats came off in spring and summer, nothing I tried to give her or distract her with would calm the flap.

Then, while visiting Beth’s grandparents, Beth put this seed pod necklace on:

Bead pod necklace

Seed pod necklace (search for “seed pod necklace” on etsy or ebay)

I noticed she played with in instead of flapping as much. All I had to do was remind her to put it on before we left the car (she takes the necklace off and flaps and rocks out to music in the car for fun) and it was like magic. Flapping on outings was greatly reduced overall and she was able to tune into her surroundings. But soon Beth started to put the necklace in her mouth, bite on it, and rub it across her teeth. Since I was worried about Beth damaging her teeth, I went on a hunt for an alternative.

I tried some silicone necklaces that are worn by moms and used as a nursing focus tool and/or teething option for their babies (food grade silicone, for example…http://www.amazon.com/Sassy-Baby-Beads%C2%AE-Silicone-Teething/dp/B00JT0DCJS/ref=sr_1_5?ie=UTF8&qid=1441192857&sr=8-5&keywords=nursing+necklaces+sassy). She did not like the single pendant version (which is similar to autism chewelry) and the beaded necklace was too big and heavy.

Nursing Mother Silicone Bead Necklace

Nursing Mother / Teething Silicone Bead Necklace

It seemed Beth preferred smaller lightweight beads. I found 9mm food grade silicone beads (on etsy, ebay, amazon, just type in “9 mm silicone beads”) and sometimes added something bigger at the bottom of the necklace. I used these sets to make her necklaces: http://www.amazon.com/dp/B00U6XXW60/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=31MEQ0C8W2TBH&coliid=I1C4Z3NY21VMVQ and http://www.amazon.com/gp/product/B00OXIBKP4/ref=s9_dcbhz_bw_d54_g201_i2_ps). These work very well for her, and they are stylish too! Note the necklace is most effective when it is long enough so that Beth doesn’t have to raise her hands up much to use it. I like the safety pop away clasps that came with the kit I bought -I just tied a simple knot on each half of the clasp and popped it together (here is a close up of the clasp, separate string and clasp link: http://www.amazon.com/dp/B00ZQ66DKY/ref=wl_it_dp_o_pC_S_ttl?_encoding=UTF8&colid=31MEQ0C8W2TBH&coliid=I2CP4OHA679GI3). The clasp does not come apart easily, so even when she pulls on it it doesn’t break. I noticed the beads tend to tangle in Beth’s hair in the back, so I left beads off the upper portion of the necklace.

IMG_6353[1] IMG_6404[1] IMG_6455[1] IMG_6548[1]

2. Window Gel Clings for Desk Work

Beth LOVES gel clings like these: http://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Daps&field-keywords=window+gel+clings . She loves getting new ones, their stickiness, their oily smell (ewww), and, unfortunately, she loves to rip them apart. Because she rips them, I got stuck on the idea that we should limit them and use them only as a reward for work. But she got very frustrated during work when I told her she would have wait for the gel clings, so eventually I gave in and let her keep the gel clings with her at the table. And just like that, the key to getting her to sit at the table for long periods of time was found. Sure we have gel clings all over the place and I am forever on the hunt for gel cling deals (CVS, Target, Jo-Ann Fabrics, ebay, craft stores are the best places to find good deals, especially at end of season). But who cares. It helps her sit happily and work for long periods of times without stress (when she is writing, I have her hold a gel cling in her left hand and it is surprisingly not distracting). Here is our “first day of first grade” pic, with gel clings all over the place.

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I guess the upshot is this. Observe your child and she/he will lead you to the best fidget. Also, tread carefully when trying to use a sensory item as a “reward.”  With the gel clings it actually backfired and made her less focused. It wasn’t a reward, it was a sensory tool she needed to use WHILE she worked.

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Stinky Caterpillar and the Magic Raincoat

Beth in her raincoat  smelling her stinky caterpillar

Beth in her raincoat smelling her stinky caterpillar

At the beginning of our autism journey I read this  piece and I vowed I would never tell Beth to stop hand flapping: http://juststimming.wordpress.com/2011/10/05/quiet-hands/.  I also read that flapping can mean a variety of things and can express happiness, relieve stress, can be a unconscious reflex, or can be an attempt to feel arms and hands that seem disconnected to one’s own body (read through comments here, it is very enlightening http://aspiringdad.wordpress.com/2008/01/30/understanding-hand-flapping-and-what-to-do-or-not-do-about-it/). I believed, and still do, that flapping is a form of communication.  I witnessed this myself when Beth was about 4-5 years old. Beth flapped down low at her waist when she was happy and faster up high by her head when she had pain or discomfort. But over the last year or so, her hands slowly creeped up near her eyes and now she flaps about the same rate and near her eyes for every situation, so it is hard for me to interpret the nuances of her flapping. Another thing that has changed over the years is the amount she flaps. I would say it is at its peak now.  And with a lot of flapping has come a lot of challenges, such as:

  • Flapping while looking down and walking, which prevents her from visually scanning her environment. It is exceptionally dangerous when this happens in parking lots.
  • It is hard for her talk, answer questions, or notice people and activities in her environment when she is flapping. This has definitely led to missed social and learning opportunities.
  • Sometimes it impacts academics. It turns out it is very hard to write while flapping!

Telling her to temporarily stop in the critical situations (parking lots) didn’t work, so I tried telling her what to do (look up, keep looking at the store we are walking to, etc.). The drive to flap was too strong, and she just couldn’t maintain an upward glance.

This spring the flapping jumped way up and I was confused as to why. Then we hit a cold patch in the weather and her coat went back on and I noticed the flapping went down again. The weather warmed a bit, the coat came off again, and the flapping jumped up. I couldn’t really keep a winter coat on her all spring and summer. But then the weather slightly cooled and I had her wear a new lightweight, polyester lined raincoat from Target. The flapping disappeared almost entirely (!).  Why?  Most people say weighted things calm children with autism, but that wasn’t the case here because the raincoat is extremely lightweight. We tried weighted items in the past, including a weighted vest and it never worked for Beth. I have done some experimentation with other light sweatshirts, but the raincoat works best. My guess is the long sleeves that touch her hands and the smooth inner lining somehow stops the flapping. She also loves wearing it and refuses to take it off even if it is warm, so I think it helps calm her. Or maybe she feels more connected to her arms and hands (?) I probably won’t know the answer to this miracle for a long time, but sometimes you don’t need to know why a sensory strategy works. It just does.

While going from our car to the in the parking lot to the mall one day, it was too warm for a coat and for some reason Beth took a toy from the car with her. Since something was in her hands, she was not flapping. Her head was up and scanning her environment and she had a big huge smile on her face while looking around. It was easier to talk to her, easier to direct her to where we were going, and she was much more connected to her environment. A year ago it may have been impossible for her to hold something and walk (she would just drop any item after a few seconds), but now this approach works!

I bought a variety of fidgets at the store and tried them on outings. By far her favorite is what I call the “stinky caterpillar” puffer toy (see it above in the picture, purchased at U.S. Toy). The thing stinks like soap and plastic, but she absolutely loves the smell (the smell itself seems to calm her, not just the touch). One day Beth asked for Stinky while she was writing because she couldn’t calm her hands and it worked. We started using Stinky for circle times on the floor in music class and Little Gym. Stinky goes wherever Beth goes and will definitely go to school with her in the fall. The combination of rain coat and Stinky helps Beth sit better and helps her tune into her surroundings.

I guess my advice from this experience is to focus intently your child’s sensory needs and make constant mental notes of cause/effect. Most times your child will lead you to the answer, and you can help by being a hyper in-tune observer, seizing opportunities, and expanding on observations.

 

 

 

 

 

 

 

It is Not About What She Doesn’t Want to Do.

It is about what she wants to do. The experts always say that “overwhelming sensory input” (over-stimulation) is the problem that leads to tantrums and meltdowns on outings. But for us, Beth’s extreme attraction to certain sensory input (which I think of now as part of her host of stims*) are the bigger problem, because her stims out-compete the activities that I want her to enjoy during an outing.

It is a simple idea, that what she enjoys is not what I enjoy and that her fascinations are beyond my comprehension, but it is hard to remember since I do not experience the world the same way that she does. The idea just kept slipping from my mind and it was replaced with me constantly saying to myself “Why won’t she just…” in frustration. But we are at a point now that outings are often peaceful and without “issues” thanks to mutual understanding and compromise. And maybe mostly because I finally accept and respect her wonder of car rides, motion, patterns, and sounds.

It’s the Car Ride Stupid

Here is Beth, on her way to an outing:

When I look at this video I wonder why it took me so long to accept that a big problem with community outings is they are competing with her beloved car ride, which is a combined auditory stim (hearing the music, often sames songs repeated) and visual stim (seeing the things outside the car fly by). Why the hell would she ever care about the outing when she could have so much more fun going back in the car?! Now that we understand each other, and we have some back and forth communication, this is how an outing often goes:

  • Beth doesn’t want to get out of the car. I have prepped her for the outing before we left the house and on the ride there. I say, “I know that you want to stay in the car. But first <insert restaurant, store, or activity>, then we will ride in the car again,” She gets out without much protest, partially because I validated her desire to stay in the car and she understands my validation, partially because she has learned that sometimes she has to do what she doesn’t want to do, and partially because she is changing her interests and is learning to enjoy certain aspects of outings. Also, maybe the draw of riding in the car and listening to music has gone down just enough from a sensory aspect that she is able to accept doing other things.
  • Beth sometimes seems anxious at first on the outing and intermittently during an outing. I ask her what she wants. Sometimes she says to go back in the car, but I repeat that we will first do the outing, then the car. I ask her if she wants something else. She usually asks for an edible (food, a drink, ice to munch on, peppermint, etc.).
  • I always keep in mind now how much she loves riding in the car and listening to music, and I try to stay a reasonable amount of time (for Beth, not for me) and end on a high note. When I sense she is done with the outing, I ask if she is ready to leave. I might do one last negotiation to have her do a couple more things on the outing before we leave.

It took us years to get to this point, but we are in a good place now with going places. And when we do a series of back to back stores in a strip mall without her screaming, or when we stay 2+ hours somewhere without Beth getting desperate to go back in the car, I am still shocked. I look around during the outing and think, people, look at this, isn’t it amazing? But what is more amazing is no one seems to notice us at all.

Stims on Outings

I had a lot of trouble getting Beth to answer questions on outings and she would have great difficulty looking at what I wanted her to see. Then one day I simply starting playing a “What do you see?” game with her and her answers were, “the lights,” “the flag,” “the trees.” That opened my eyes to what was important to Beth.  So far, I have learned that Beth is attracted to repeated patterns (e.g. lines of lights, ceiling tiles, windows with subdivisions), movement (e.g. trees and flags moving outside that she can see through windows, moving and blinking lights on vending machines and video games), and a variety of sounds. She is not really overwhelmed by sensory input, she is just really attracted to certain sensory input (stims) and it is simply out-competing what I want to share with her. The “tell me what you see” game is a great starting point for having her take note of her surroundings. It gives me an opening to validate what she sees and likes, then I can take a turn and add to her thoughts or share with her my observations. Give and take, not take and give.

Another stim hurdle on outings is that Beth does a lot of running while looking straight down at the floor. She seems to have no idea where she is when she does this, but she rarely runs into things or people (anymore). Lots of therapists have taken a shot at describing the running and looking down at the floor behavior with labels like proprioception problems, pacing, over-stimulation, impaired self-regulation, or motor planning issues. One day I realized that watching the floor or the ground move under her feet was probably a lot like looking at things going by when she is riding in a car. Now I tell her to just stop running around sometimes and then tell her to look around. Look at the people, look at the things, and “tell me what you see.” And she does. Again, looking at the floor moving by was out-competing everything in the environment. Have you ever noticed the variety of patterns on the ground and floor and how unique they all are, and how interesting they are when you are running?  I never did either, until Beth opened my eyes.

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*A definition of stims: http://autism.wikia.com/wiki/Stimming

 

Respecting the Stim, Post #3: How Water Stim Led to Swim

With the exception of when Beth was a newborn and she screamed bloody murder at bath time, which resulted in sponge baths for 4 months, Beth has always loved water. Between ages 3-4, Beth’s “obsession” and stim (1) with water seemed to get in the way of nearly all play activities and outings. But over the past 1.5 years, I stopped thinking of water as Beth’s “obsession” and now I think of it as her love and, in the case of swimming, even a gift. In this post I share with you the ups and downs of Beth’s water story. And, as with all the posts in this series, fighting the stim was a fruitless effort, and true progress occurred when we learned to live with her water stim and go with the flow.

Early Love of Water

Beth’s love of water started with swimming classes at 9 months old. She clearly loved the water more than the other babies. “She is so happy in the water! ” the teachers and other parents would say. Pretty soon her love of water expanded into other areas, but at that time water was not a dominant interest or obviously stim-like. It was just fun.

Infant Swim Class

Swim Class

IMG_5041

Exploring Fountains (Longwood Gardens)

IMG_5038

Enjoying the Rain (Longwood Gardens)

First Water Stims & Preoccupations

Although I did not realize it at the time, Beth’s first water stim started at about 2.5 years old with a water table cup (“Blue Cup” as she called it). She would fill Blue Cup with water and run a stream of water over her fingers over and over.  When Beth went to the first preschool, before we received the autism diagnosis and when she was flipping out all the time while there, I brought in Blue Cup and told the teacher it might help her calm down. Let’s just say Beth spent a lot of time running water over her fingers with her Blue Cup at the sink in the preschool room while the other kids were napping on the floor.

Water Table

Water Table with Blue Cup

IMG_5729

Beth and her Blue Cup (Running the Stream of Water on Her Fingers)

We let Beth be Beth back then, so we gave Beth time to play with her Blue Cup at home and went to various locations with water because she seemed so happy in and around water.

The Shore

The New Jersey Shore

Lake Nockamixon

Lake Nockamixon

Then the intensive therapy sessions started from age 3-4. The therapists recommended reducing time with Blue Cup, minimizing stimming, and teaching Beth that she could do other things with water. For example, to keep Beth from walking in the creek at every visit (which was sometimes a problem when the creek was very dirty or when it was cold), we tried replacing getting in the water with throwing heavy rocks into the water.  The idea was the “heavy work” of throwing the rocks and the visual of watching the rocks going in might be a sensory activity that would replace her desire to go in the water. She was mildly amused by throwing rocks for a awhile, but just like all other “replacement” attempts, she went back to craving direct contact with the water. As for attempts to make water functional (watering plants, getting herself a drink, turning on the hose to play with it, etc.), that took another 1-2 years to develop, and seemed to only occur after her need for contact with water calmed somewhat and her joint attention and motor planning improved.

Throwing a Big Rock Into a Her Favorite Water Hole

Rock Throwing at a Favorite Water Hole

After the failed attempts to get Beth to do other things with water, we let Beth get in water and play with it as much as possible again. I even got a therapist to go in the pool with Beth and do some language work. But soon we discovered that we had a bigger problem than Beth wanting to be in the water all the time.

Water Play Sabotaged By Oral Issues

The mouthing issues had ramped up from ages 3-4. As a result, Beth started to swipe water from dirty streams and drink from garden fountains, so we had to limit those activities. My new hope when we quit intensive therapy at around age 4 was that we could swim a lot and it would reduce her desire to drink undrinkable water wherever we went, and then we could do more activities near streams and with fountains again. Also, I hoped to do Floortime sessions in the swimming pool and work on language and interaction. But when we started swimming often, I realized she sneakily drank so much pool water that she became ill with osmotic diarrhea due to the salts in the pool. As soon as the water hit her mouth she would let it flow or drain in because it was sensory heaven to her. There were serious health risks, and all attempts to stop her or replace the behavior failed and often led to tantrums. So, at that point, all water play and outings where she had access to undrinkable water had to be limited. It was very sad that the sensory thing she craved and needed most was being sabotaged by another part of her autism.

The Start of the Water Mouthing Issues

The Start of the Water Mouthing Issues

Going With the Flow

We halted swimming for an entire year in hopes that her pool drinking would decrease with time.  We made do the best we could with a garden hose and sprinkler at home.

Sprinkler Play

Sprinkler Play

At this point, outings were a problem, because she would tantrum for water sources she could not access (duck ponds, pools, etc.) and she would try to drink from dirty water sources at every opportunity. I did my best to choose activities that centered around Beth’s water interest. It made sense in my head that the aquarium should be the ideal place for Beth, because she loved water so much, but she seemed miserable. Then Beth finally got enough language to say “Go in the water!” on an aquarium outing and it hit me. It was like the “Water, water every where” in the Rime of the Ancient Mariner Poem. Putting Beth around tons of water that she cannot get into is like surrounding a man dying of thirst with water he cannot drink. It is torture for her. Especially since we had stopped swimming and she was probably thinking about how much she missed swimming every time she saw a pool or tank of water! It seems obvious in retrospect, but I until that point I didn’t realize how much Beth needed to have contact with water. Over time, surviving trips to places with inaccessible water (tanks, ponds, etc.) was possible with a lot of edible rewards and short repeated visits.

Beth at the Aquarium

Beth Wants to “Go in the Water”(Even Shark-Infested Water)

At this point I started to expand my thinking and observe Beth very carefully. One day while blocking Beth from drinking from a dirty water source, she leaned her head down and did the head dunk thing. And I said, “Yes!  Dunk your head!” At least we could use the head dunk move for places with garden fountains and it was much safer than drinking the dirty water. Over time I have figured out ways to use water sources during an outing as a break and reward (letting her play in misters, head dunk in drinking fountains, head dunk in garden fountains, playing with hoses at friend’s houses, playing in the rain, etc).  Now I carry 2 extra outfits and an extra pair of shoes so that she can get wet if an opportunity presents itself. Sure we get some stares, but I know this is only temporary. Blue Cup mentioned above was a thing of the past this summer, so one day we will visit a place without Beth dunking her head. For now we just need to go with the flow.

Head in Fountain

Morris Arboretum Fountain Head Dunk

Morris Arboretum

Morris Arboretum Stream Head Dunk

Elmwood Zoo Mister

Playing in the Mist at Elmwood Zoo

Back in the Water

At the beginning of this summer (2013), it had been almost a year since we stopped letting Beth swim due to excessive drinking of pool water. We decided to give swimming a try again. It was much better, but we still found ourselves telling her over and over “spit it out” and worrying about her pool water intake. About this time we discovered that if we gave Beth juice half way through swimming and kept her well-hydrated she drank a minimal amount of pool water.  Drinking pool water was still a worry, but much less so.

In July we went on 3-week vacation to my husband’s parent’s house near Traverse City, Michigan.  Their house is right on Lake Michigan, so we thought it would be perfect for Beth.  Although the water was a bit chilly, we thought she would like to walk around in it and dunk her head.  But the first 4 days there were very, very difficult. Beth regressed and bit both me and my husband, had sleep problems more nights in a row than usual, and was very difficult to reason with. She liked walking in the waters of Lake Michigan okay, but something was bothering her. Thankfully, the relatives “up north” had other water-related activities for us to try.

The 4 person jet ski and power boat were winners. She loved going fast.  We sandwiched Beth between two adults to keep her safe on the jet ski. In the boat I had to hold onto her life jacket to keep her from falling overboard, because she loved to lean over the edge and touch the water splashing off the side of the boat.

Beth, Ready to Jet Ski

Beth, Ready to Jet Ski

Beth Enjoying Motor Boating on Torch Lake, Michigan

Beth Enjoying Motor Boating on Torch Lake, Michigan

Feeling the Water

Feeling the Water While Boating

Jet skiing and boating were fun, but the true turning point came when a relative gave us guest passes to a resort so we could use the swimming pool. After swimming regularly again, Beth was pretty much back to herself. I believe Beth’s initial upset was because of the “water, water everywhere” concept again. Looking at all the water in Lake Michigan, but not being able to swim in it because it was too cold, was torture for her!

A Stim Turns to Swim

One day during the vacation in Michigan,  I was playing with Beth in the resort pool and noticed she loved when I went under water.  I would fall into the water over and over expressively and she smiled widely. Then, she just did it…went under the water all on her own. Pretty soon she was going under water over and over and couldn’t get enough of it. Smashing herself into the water was a sensory activity that was stim-like, with a major upside that she did not swallow water when she was underneath! We had an issue with the water burning her eyes, but she was so motivated to go underwater she let me put a swim mask on her (note it is a swim mask without the nose block: http://www.amazon.com/Seal-Kids-Mask-Transparent-White/dp/B00B11MTM4/ref=sr_1_14?ie=UTF8&qid=1379333696&sr=8-14&keywords=swim+mask). Here is a video of Beth during these first days of underwater exploration, with Grandpa doing the “torpedo kid” push.

Over time she has taught herself to swim underwater and can come up for air in between strokes.  I am looking around at other kids who are 5 and she is often the only child her age able to swim underwater. People say, “look at her go,” “wow, she can really swim,” and to their kids, “honey, do that, swim like that little girl.” And I just smile and think, if only they knew how we got here.

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(1) For a definition of stim and other post in this series, see: http://wp.me/p2OomI-PY and http://wp.me/p2OomI-QC

Respecting the Stim Series, Post #2: Spin Thing

Note: For a definition of stim and background for this series, see http://wp.me/p2OomI-PY.

This is a Pop-Onz toy. It is designed to encourage very young children to build. There are two circular areas of the toy’s table where kids can place blocks and watch them spin around. The toy is notable because it is VERY hard to “pop” the building units onto the table, which makes it a terrible first building toy. This design flaw is probably why these toys aren’t made anymore and they can only be found on eBay and in thrift stores. The Pop-Onz toy is also notable to me personally, because it signifies the history of my daughter Beth’s spin stim.

pop-onz

The Beginning of Spin Stim

Beth was about two and a half when she started at her first preschool. Within weeks of starting preschool, Beth’s teacher called my husband and I to a meeting and said she was “very worried” about Beth.  The teacher recommended a developmental evaluation by a medical doctor for diagnosis and a school system evaluation for therapy support. We knew Beth was stressed, but we thought she would eventually adapt. Beth did not adapt as anticipated and we pulled Beth from the school and started intensive therapy at home for autism. Looking back, I realize Beth tried to adapt in her own way.  For example, at the school playground she rocked on a rocking toy and threw wood chips to soothe herself (now I know these are common sensory/stim activities for children with autism, but I was clueless at the time).  And every morning at drop off as I turned to leave Beth at preschool, she ran to a Pop-Onz toy sitting in the corner of her preschool room and pressed the button to absorb herself in the spinning characters.  She was desperately trying to soothe herself.

Fighting the Spin Stim

Since Beth loved the Pop-Onz toy at her preschool, I bought the same toy for home. But Beth seem overly preoccupied with the spinning characters on the Pop-Onz toy. If I would try to talk to her while she was using the toy or interrupt the spinning to show her how to build on it, she would either ignore me, walk away, or get frustrated. I asked therapists what I should do about the preoccupation with spin and how we could use it in play, but no one had an answer. The prevailing view was we had to get rid of spin toys like the Pop-Onz so that we could work with Beth to help her play in a traditional way.  The Pop-Onz toy went into the attic along with other stim toys that were “too obsessive” and we spent years trying to coax Beth to play with us the traditional way. The end result of elimination of stim toys (electronic toys with spinning, music, and sounds) was no real progress with play milestones and no improvement in hand use during play. One day I gave in and ended up right back where I started, trying to use stims like spin (and sound…a topic for the next post) to help Beth develop.

Using Spin Stim as a Motivator

Since I was having no luck building with Beth using traditional means despite trying a variety of toys and approaches, I resurrected the Pop-Onz toy. First we build (sometimes I block the button while we build), then Beth presses the button to have the spin as a reward. Recently I noticed she really likes some of the structures we build because she smiles and flaps a lot when they spin, so she is learning that building different things can be interesting. When Beth was younger, she would have been frustrated because she lacked the hand strength and coordination needed to pop the blocks on the nubs, so I doubt we would have been able to use this toy for building back then. But I believe I would have been able to help Beth develop with easier building sets with spin, which underscores the importance of having appropriate toys that are in line with skill level before attempting to guide the child and expand their play and hand use.

Soon I was looking for other ways to use the spin stim.  Here are some examples of the ways I used spin stim to encourage Beth to use her hands during activities:

I thought it would be cool to try building a translucent marble run (1) on the light table with Beth. Unfortunately the translucent marble run set was too difficult for Beth in terms of building, but she liked dropping the marbles into the big funnels and watching them spin. So much so that she would get very flap happy and then do it over and over. At that point, I just surrendered. There was no way to get around the stim, so I decided to work with it. I thought of Floortime and how I could expand this activity in small ways to help her development. We worked on taking turns, but she quickly bored with that expansion. Then I showed her several times how to drop the marbles in the small funnels in the upper portion of the toy. This may not seem like a big deal, but for her to do something other than drop them in the big funnels to watch them spin was huge.  She was looking up (something she resists), so that was good for her head and neck muscles. She was dropping the marbles into a small funnel and at first she lacked the precision to get them into the funnels and missed a lot. Soon she figured out pinching was the best way to take the marbles from their holder and get them into the small funnels. Pincer grasp, hand-eye coordination practice, looking up during an activity, all while having a good time…score! For the next phase I need to get a marble run set which is easy to put together and has a final structure with a motivating spin as the reward. If you have a suggestion for this type of toy, please leave a comment on this post or my Facebook page.

My friend introduced me to gear building toys, which work great for spin stimmers like Beth.  Here are some examples of Beth and I building with gear sets (2, 3).

A giant gum ball machine in a local ice cream shop was a huge spin stim hit.  Beth learned to put in the quarter and work a handle that was very difficult to turn in order to dispense the gumball down a giant twisty slide in the bottom of the gumball machine.  Normally she would have given up on a handle that difficult to turn, but seeing that gumball spin around and around coming down the slide was very motivating to her.  She could care less about eating the gumball, so she won’t dispense gumballs in machines without the twisty slide.

Inserting Quarter in Gumball Machine

Inserting a Quarter in the Giant Gumball Machine

Turning the (Very Tough) Handle on the Gumball Machine

Turning the (Very Tough) Handle on the Giant Gumball Machine

The Gumball Machine Slide Stim Spin Reward

The Giant Gumball Machine Slide Stim Spin Reward (Well Worth the Quarter Per Gumball)

Spin Stim for Relaxation

In addition to being a good motivator for play and hand use work, spin stim is very important tool for relaxation.  For example, Beth does best in restaurants that have fans running because she can gaze at them to relax.  Also, spin toys have another purpose other than play…they help Beth relax before bowel movements.  The tough part about using stim toys for relaxation is when and how to make them available so that Beth is not using them all day long. Recently I have put the Pop-Onz, gears, and marble run up on bookshelves and I only bring them down if she asks for them or if I think she needs to relax before a bowel movement (or if I want to initiate a building session).

Final Thoughts….

I feel we would have been better off if we had included spin stim as a motivator for play and hand use development from the start of therapy (as long as the building sets were easy and at Beth’s skill level). I do feel the stims have a purpose, and my child’s brain is wired to enjoy the spin. I feel my role is to understand the purpose of my child’s stims, be creative about how to use them help my child develop, and create a balanced approach that includes a time for all activities, including those with stim.

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1. http://www.amazon.com/Marbulous-Translucent-Marble-pieces-plus-marbles/dp/B000XA80XG/ref=sr_1_1?ie=UTF8&qid=1373570748&sr=8-1&keywords=marble+run+clear

2. http://www.amazon.com/Tomy-T6526-TOMY-Gearation-Building/dp/B00000ISEH/ref=sr_1_10?s=toys-and-games&ie=UTF8&qid=1373570788&sr=1-10&keywords=gears

3. http://www.amazon.com/Quercetti-Georello-Kaleido-Gears-pieces/dp/B00000J048/ref=sr_1_2?s=toys-and-games&ie=UTF8&qid=1373570766&sr=1-2&keywords=gears

Respecting the Stim Series, Post #1: A Sticky Situation

Definition of Stim (Urban Dictionary, by Cyndi, H. Apr 17, 2006): 

Stim, stims or stimming is short for “self stimulation.” Almost everyone does it (tapping feet, cracking knuckles, twiddling thumbs), but in autistic people these behaviors are more pronounced and may seem downright strange. Autistic people often engage in stimming when they are stressed, to self regulate and sometimes to express emotion.

Common autistic stims are: rocking back and forth, headbanging (not the music kind), finger flicking/rippling, spinning, humming, repeating words or sounds and complex body contortions.

Living with Stim

Unless you live with autism and stims, it is impossible to wrap your head around the above definition. And even if you live with certain stims, you will not understand the stims of others.  There are common threads of course, but no two people are alike, so the motivation behind stims and the meaning of stims can have astounding variation.

My purpose in writing this series is to share what I have learned about my daughter Beth’s stims. I want to spread the word that stims are not scary, and, in fact, they can be quite informative.  If I had stopped my daughter’s stims, I believe it would have had negative implications (for example, increased stress and conversion to less obvious stims that were harder for me to interpret). To me stim is just a neurological difference, and it is my job to understand her stims and figure out what she is trying to say to me and how the stim is helping her. After I understand the purpose of a stim, it becomes a form of communication from my child to me, and I can sometimes use the stim for her developmental growth.

Over time, understanding and using the stims to help my child has become much easier. Many stims seemed all-consuming in the past and she seemed unreachable while stimming.  But now, at age 5, Beth hears me and responds to requests during stimming, which allows me to join with her in stim-related toys and activities.

So, with the above background in mind, I will start my series on “respecting the stim” with sticky stuff.

Stickers on the Fingers, Hands, & Lips

I tried to use stickers to teach Beth preschool and language concepts when we quit intensive therapy and began homeschooling a year ago. I bought highly motivating sticker books with her favorite characters and was excited to use her “sticker stim” as a teaching tool.  But the idea completely backfired. All Beth cared about at that time was repetitively sticking the stickers to her fingers, hands, and lips. I would try to guide her during the sticker book activity and she was so preoccupied with the stickers, it was as if she could not register a thing I said. I tried to limit the surface area and duration of the sticking, and told her to pinch the sticker instead and quickly directed her to “stick it on the paper” before she could stick the sticker elsewhere on her fingers, hands, and lips. I had marginal success with that approach, and usually Beth just ended up frustrated because I was interrupting her stim.  In my final attempt, I hoped that if we worked with sticker books a lot, the stim would decrease due to desensitization.  After working with the sticker books for hours a day for a few weeks, the sticker stim showed no decrease and I decided using stickers to teach was impossible.

One day a clerk at a store gave Beth a sticker, and I noticed how much Beth loved them and how calm she seemed while repetitively sticking the sticker on her fingers, hands, and lips (the latter always seems to take people aback [“OMG, not on your lips!”], but I just make a joke and brush by the comments now).  Soon I traveled with packs of stickers in my purse, and they were a useful tool to help Beth relax in stores and they kept her occupied while waiting in restaurants. For a long time, her sticker stim was a very helpful tool for Beth’s relaxation, but I was unable to teach her concepts using stickers (or anything else with a sticky property, like glue)*.

Beth Stimming with a Sticker

Beth Stimming with a Sticker

The Sticker Stim Sweet Spot

Recently I was cleaning out a drawer and found those old sticker books. Things have changed a lot with Beth’s stims since we had problems with the sticker books. Is it possible to use them now? Here is a video tape of our recent attempt with a sticker book:

There is still stim with the stickers, and I have to guide Beth to do the activity, but she is engaged and working with me. I like to think we are hitting the “sticker stim sweet spot” in that the stickers are relaxing and motivating, but they not all-consuming. A lot has changed in a year, so it is hard to say if it is the stim effect (or appeal?) itself that is decreasing, or if her ability to filter the environment, integrate senses, and pay attention have increased while the stim effect has stayed the same. Whatever it is, this will be a common theme in this series.  What was once a total preoccupation with a stim with no possibility of interaction is now an opportunity for interaction and learning for us.

I have no idea if this is a common developmental path for all stims for all kids who have autism, but it would be nice to see more research in this area.  If it turns out that stims nearly always calm down like Beth’s did, that information would be very helpful to parents who are desperately trying to reach their young children who are stimming a lot.  Maybe parents can take comfort in the knowledge that the stims will calm and that they can be an important tool for interaction and development in the not too distant future.

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*If I had it to all over again, I would have used more magnet and vinyl play sets when we first started and just avoided the sticky stim during teaching.  I am using these sets now and they are fantastic.  Note: For the Smethport and Imaginetics sets, the magnets are not super strong and you have to be very careful punching them out (and your child or client might try to tear them).

Create-A-Scene by Smethport (do a search for Create a Scene on Amazon for more sets):

http://www.amazon.com/Create-A-Scene-Magnetic-Playset-House-SME7107/dp/B002ZAZK30/ref=sr_1_1?ie=UTF8&qid=1370953827&sr=8-1&keywords=doll+house+magnet

http://www.amazon.com/Create-A-Scene-Magnetic-Farm/dp/B00005C12F/ref=sr_1_12?ie=UTF8&qid=1370953906&sr=8-12&keywords=farm+magnet

Imaginetics Sets (do a search for Imaginetics on Amazon for more sets):

http://www.amazon.com/Imaginetics-M86051-Forest-Friends-Set/dp/B004MN3EKY/ref=sr_1_1?ie=UTF8&qid=1370953951&sr=8-1&keywords=magnet+forest

Magnetic tins example:

http://www.amazon.com/Curious-George-Magnetic-Tin-Play/dp/B003WKTGD2/ref=sr_1_36?s=toys-and-games&ie=UTF8&qid=1370954412&sr=1-36&keywords=colorforms

Magnetic dolls example:

http://www.amazon.com/Melissa-Doug-Maggie-Magnetic-Dress-Up/dp/B000F9IV8Y/ref=sr_1_9?s=toys-and-games&ie=UTF8&qid=1370954079&sr=1-9&keywords=magnetic+dolls

Vinyl Sticker Sets/ Vinyl Wall Clings / Colorforms sets (just a few examples, more on Amazon):

http://www.amazon.com/Melissa-Doug-House-Reusable-Sticker/dp/B004PBLP5O/ref=sr_1_1?s=toys-and-games&ie=UTF8&qid=1370954166&sr=1-1&keywords=colorforms

http://www.amazon.com/Melissa-Doug-Vehicles-Reusable-Sticker/dp/B00B3U7SMO/ref=pd_bxgy_t_img_z

http://www.amazon.com/Pomegranate-Charley-Harpers-Sticky-Critters/dp/B00AL3IVSY/ref=sr_1_1?s=toys-and-games&ie=UTF8&qid=1370954278&sr=1-1&keywords=vinyl+sticky+critters

http://www.decoratetogo.com/rmk1384scs.html

http://www.amazon.com/Colorforms-Games-Fancy-Nancy-Party/dp/B001SOZE12/ref=sr_1_37?s=toys-and-games&ie=UTF8&qid=1370954469&sr=1-37&keywords=colorforms

http://www.amazon.com/University-Games-77953-Silly-Stick-Ons/dp/B00000IZW2/ref=sr_1_1?s=toys-and-games&ie=UTF8&qid=1370954495&sr=1-1&keywords=colorforms+silly+faces

Grocery Store Phases

Grocery shopping and autism do not go well together. Sensory, communication, and self-regulation issues when combined with a trip to an overstimulating store results in one of the most difficult outings parents and their children with autism face.

We have had our ups and downs with grocery shopping, and the down times included truncated lists and abandoned shopping carts. Beth is 5 and we still have to work very hard, but thankfully grocery shopping is currently tolerable. Beth has progressed so much we are using it as a growth experience now, rather than just a mere exercise in survival. I thought I would take the time to share our story, and the phases we have gone through. If you are struggling with grocery shopping on the spectrum, maybe this post will give you hope and/or some new strategies to try.

Phase 1: Screaming Baby

Beth was a fussy baby from 2 weeks on. Her scream in a store would cause people to look in concern and ask if she was okay. I think my husband and visiting family members did most of the grocery shopping in the first few months (maybe even the first year) of Beth’s life.  I was so sleep deprived due to Beth’s poor sleeping and her constant begging for breast milk as she tried to sooth her hyped up nervous system, I can remember very little of grocery shopping with her as an infant. This picture sums up what I was dealing with…

A Very Pissed Off Infant Beth (Complete with Middle Finger)

A Very Pissed Off Infant Beth (Complete with Middle Finger)

Phase 2: Toddler Tango in the Shopping Aisles

When Beth was a toddler we could take her grocery shopping, but it wasn’t easy. She was fussy and wanted to be held a lot.

Hind sight is 20/20, so it all makes sense now. Beth had weak core muscles, low tone, and little body awareness, which made sitting difficult. Also, she was at the tail end of normal when she started to walk and she took a very long time to walk without falling or tiring out. All of this led to frustration for her. She wanted to move herself and sit, but couldn’t. Her physical issues made sitting in the shopping cart difficult and walking while hanging onto the cart impossible. Plus she probably had unrecognized sensory issues. During this phase my husband and I took turns holding Beth and bouncing her in a funny dance-like fashion to keep her calm. It led to strong arms and sore backs, and also helped us survive the shopping trip.

grocery shopping toddler

Toddler Beth, Hanging onto the Shopping Cart

Phase 3: Preschooler Riding in the Shopping Cart: Bribery, Convergence Method, and Other Survival Techniques

And right about the time Beth got the hang of sitting in the cart, the sensory stuff and Beth’s demand for independence really kicked in. This was the toughest phase.

There were screams, tantrums, and a few meltdowns. There were a few episodes where I was bit, kicked, hit, and scratched while she was riding in the shopping cart. I think everything bothered her (lights, sounds of the refrigeration units, the radio, strangers coming up to her, and on and on). If Beth needed something (potty, food, drink), since she was already overwhelmed in the store, her language went down to almost zero and she could not request things. Also, I believe she became more aware of her surroundings and saw things she wanted (snack, toy, etc.), but was so overwhelmed she could not gesture or verbally indicate what she wanted.  So instead, she just lashed out in frustration.

This period called for numerous strategies to make shopping tolerable for Beth (and for us), and we tried all of the following at some point:

  • Asked the manager to turn down the radio
  • Oral Supports/Rewards: chewy tubes, lollypops, mints, snacks from the shopping aisles, a cookie as a reward from the store bakery [Giant Food Stores gives out a cookie for free at the bakery, and we usually end our shopping trip with a cookie there.  It is also a great opportunity for Beth to practice saying “thank you” while getting her reward.]
  • Sticker as a reward from the cashier (another good opportunity to practice saying “thank you”)
  • Fidgets and stickers to occupy Beth in the shopping cart
  • Visual schedules and saying over and over “first we shop, then we get in the car” 
  • Convergence method: I took one cart and Beth and I started on one side of the store, my husband took another cart and started on the other side of the store, and we converged somewhere in the store.  I focused on Beth’s shopping skills/tolerance and we got as far as we could, while my husband focused on getting the shopping done as quickly as possible.
  • When things were really tough, my husband did the bulk of the shopping on the weekends and Beth and I did smaller shopping trips during the week to practice shopping skills/tolerance.
grocery shopping 2.75

Beth Sitting in the Shopping Cart and Calming Herself with a Sensory Toy

My one regret is that I did not try a weighted vest during this tough phase.  Beth tried a compression vest in therapy and totally freaked out, so I stayed away from them.  But she never tried a simple weighted vest.  A friend of mine uses a weighted vest for her son while shopping and has great success. I bought Beth a weighted vest recently and to date we have only tried it once in a store that she used to find distressing, and she did great and was not stressed at all. Time will tell if I think it is effective for Beth, but anything is worth a shot when it comes to shopping and autism.

Weighted Vests (http://www.amazon.com/Fun-Functions-Pink-Weighted-Vest/dp/B001UU9OHE/ref=sr_1_3?ie=UTF8&qid=1369948645&sr=8-3&keywords=weighted+vests+autism)

Weighted Vests (Supplier is Fun and Function, Available on Amazon)

Phase 4: Preschool Driver

At about 4 or so, Beth’s sensory stuff started to calm down some and Beth fell in love with pretend driving in the cars that had shopping carts attached to the back of them.  She pretended to drive in the car for a few aisles until she got bored and crawled out, and then I put her in cart seat for the rest of the trip.

grocery shopping car

Beth in the Driver’s Seat

One day, as Beth exited the pretend car and I tried to get her into the cart seat, she locked her legs and refused to go into the seat. I spent most of that shopping trip retrieving her as she ran away from the cart. In an effort to get her to stay with me, I told her repeatedly to hold onto the bar of the cart and push. It took a few trips, but soon she got the the hang of it and decided she loved pushing the cart. Shopping trips became a whole lot easier (and slower). Some people say heavy work like pushing a shopping cart is helpful to anxious kiddos. I am not sure that is the reason she liked it, but thank God it worked out so we could still shop.

Beth Pushing the Shopping Cart

Beth Pushing the Shopping Cart (This is a Recent Picture, Where She is Wearing the Weighted Vest)

Phase 5: Kiddo Gets a Shopping List

Beth is 5 now and can usually tolerate a full grocery shopping trip on the weekend.  We still use oral rewards, such as the cookie at the bakery. When Beth runs out of her groceries during the week, we do a small trip with a shopping list* I make for her on the iPad app Choiceworks (https://itunes.apple.com/us/app/choiceworks/id486210964?mt=8). I am showing her how to recognize items on a list and retrieve them from the shelves.  If it is a good day, she will help me load the food onto the belt, swipe the credit card, and unload some things from the car. Slowly we are inching towards Beth helping me with the shopping and becoming more independent. Here is an example of Beth’s Choiceworks grocery list and a video of her getting an item from the shelf and checking it off:

grocery shopping list

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*I make the shopping list by saving each image I find through a search of the item on Google Images (or occasionally I cannot find a good image on Google Images, so I will take a picture of the item with the iPad camera). I save a Google image onto the iPad by pressing the image and holding my finger on it until a window pops up and asks if I would like to save the image. After saving an image, I type in the written label and then record my voice saying the item.