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.