Sugar Alcohol is Evil

So I thought gum was the ultimate solution for Beth at first. It satisfied her need to self-regulate by mouthing, tasting, and chewing. We went with sugar-free so her teeth wouldn’t rot out of her head. Sometimes she went through a lot of gum at the table while doing school work or in a stressful social situation. I would just take the old gum and give her a new piece and didn’t think much of it because the gum was working miracles (she was able to sit for long periods of time and not have outbursts). I thought it was doing her no harm, and made sure to check what was in the gum and check how much sugar alcohol (a sugar substitute) it contained. The relatively little amount of sugar alcohol she would swallow didn’t seem to be a problem according to articles I read. She would have to chew like 3-4 packs of the gum to even be concerned. Or so I thought.

Simultaneous to using gum over the past 2 years or so, I thought I had just about solved an issue with kiddo’s gut. I surmised she was lactose intolerant and being strict about the lactose in her diet helped. She still had some loose stools and a lot of sitting on the potty at night, but it was better than frank diarrhea when she had lactose in her diet. Also, simultaneous to using gum, Beth had an increase in sound sensitivity and she covered her ears more and had a spike up in her fear of noises. Little did I know all of this was related to the damn sugar alcohol.

Two clues happened that led me down the right path: 1. Beth started holding her ears when I knew she was in pain (like bumping her leg … so general pain equaled holding ears and sound sensitivity…aha!) and 2. Beth started asking for a lot of gum and her intestinal distress (gas, diarrhea at night) went way up. Finally I put it all together and decided the gum and sugar alcohol could have a profound affect on her behavior and physical well-being. Back to Google for more research and it turns out ONLY A LITTLE SUGAR ALCOHOL CAN CAUSE STOMACH UPSET IN CHILDREN (see this article for example, http://www.diabetes.org/food-and-fitness/food/what-can-i-eat/understanding-carbohydrates/sugar-alcohols.html?referrer=https://www.google.com/).  In addition, if you just happen to have a sensitive stomach to begin with, ANY AMOUNT OF SUGAR ALCOHOL CAN UPSET SOME PEOPLE’S STOMACHS (http://blogs.webmd.com/healthy-recipe-doctor/2010/03/the-dirty-little-secret-of-sugar-free-products.html).

Only now, after I took her off the gum completely, do I understand the vicious cycle we were in: 1. Beth gets nervous and wants to mouth, 2. I give her a piece of gum, 3. The flavor wears out and she asks for more, 4. At a certain level of sugar alcohol Beth gets gas and other discomfort, 5. Because mouthing is her go-to comfort she asks for more gum to soothe her stomach distress, 6. Then she asks for so many pieces of gum she ends up ingesting a fairly high level of sugar alcohol and ends up with loose stools by the end of the day.

It was not easy to take her off the gum, but it has been life changing. Sound sensitivity immediately went away and she can eat milk products again (I guess the sugar alcohol was irritating her stomach and making the milk hard to tolerate).  She has had less stomach distress and less time sitting on the potty. After we went through 2 months of telling her “no gum” she finally accepted it and is overall calmer and can go through entire classes and activities without any oral aids.

So spread the word on intestinal issues, gum, and sugar alcohols. Our kids often can’t tell us what is going on with them internally, so this is definitely a serious issue in the autism and special needs communities.

The other day my friend told me that her son’s teachers were going to try gum with him to keep him quiet and regulated in class. My advice: DON’T DO IT.

 

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.

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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.

Going Out to Eat

Beth and I go out to eat a lot. True it is important social skills training, but I also hate to cook, so let’s just say kiddo has had a lot of practice. When we go out for a meal now, as Katy Perry so eloquently puts it, “it’s no big deal.” No tantrums, no meltdowns, we can eat a fair number of places, and she is pretty good at waiting. But in truth it is a big deal that we can just go out to eat at a quiet restaurant or a busy one (I still avoid the really loud places). It is a big deal I brought her to breakfast with me and she occupied herself long enough to let me talk to other autism moms. It is a big deal that on a whim I decided to have Chinese food for dinner last night while hubby is traveling for work and that we just walked in, were seated next to an older couple (the only people in the restaurant), and we all enjoyed our meal without huge incident. It is BIG.

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Well, How Did I Get Here?

Yes, that was a total steal from Talking Heads Once in a Lifetime, but I really was thinking of that line while sitting at dinner with her last night. How did we get here? How is it so much easier now? Gone are the days where I am dragging a screaming, overwhelmed, frustrated kid out of a restaurant. Then I thought, what does it look like to the couple sitting next to me?  Answer: I am still working very hard and they can see that. Everything is set up for success, I am constantly anticipating and heading off things before they become issues, and throughout the meal I am talking to her to guide her through and to orient her to what is happening. Is it an accident that we went to restaurant that is dead quiet during the week, we are sitting next to an entertaining fish tank, there are white Christmas lights everywhere, and they have something on the menu I know she will eat? No. Every single accommodation and strategy I use was born out of a hell of a lot of experimentation, failure, and small steps forward. I don’t wait for problems to happen, I head them off. BUT, I don’t think this would be possible at all if we didn’t have these four things going for us:

1. Now she is generally quiet by nature and tends to withdraw instead of freak out when she begins to get overwhelmed. In short, I got lucky here. Although it makes it hard to read her signs when she withdraws as she starts to get overwhelmed, I am getting better at it. I know when she is reaching her limit with some subtle indications she gives before she just yells “go to the car!” But I’ll take “difficult to read” signs any day over what some others have to deal with. During our meals out, I always think of others I know who have great difficulty taking their kids out to restaurants. Yes, I fully appreciate how lucky I am here. Damn lucky.

2. Beth has enough language to tell me what she wants. A little language leads to negotiation, which helps waiting. No we can’t go to the car yet, we are going to get the fortune cookie and pay first. She gets that now. A little language goes a very long way to defusing outbursts and meltdowns.

2. Developmental pica is saving the day! It is not often that I thank her pica (eating non-food items like lip gloss, sand, soaps, and straight chili pepper from the pantry-yikes!), but lately her pica has been calming a bit and changing to a love of different foods and drinks. Also, thanks to the sensory reasons surrounding her pica, any warm, cold, or bubbly drink helps occupy her, as does munching on ice, so I use those all the time to help her wait while we are out to eat. For example, recently she pounded two cups of decaf coffee at a breakfast with autism moms (and they were highly amused!). She ate lots of ice last night at dinner. Diet caffeine free soda or seltzer water is a God send at places. Thank God for pica!

3. I discovered a coat helps in a restaurant. As you can see Beth is sporting a black rain coat in the picture above. Coats calm her flapping and help her sit- a discovery I finally pieced together with all our restaurant outings over various seasons. The rain coat material is the best because it is stiffer and provides some resistance when she raises her hands, so she just prefers not to flap then for competing sensory reasons (I think).

The Work is Worth It

As I was sitting with Beth last night at dinner…occasionally telling her to sit on her bottom, try munching on ice to occupy herself, telling her the food was coming soon, telling her to look at the lights and fish because it will help her wait, I eventually asked her what her favorite fish was and asked her what she was looking at. It is a wonderful thing she is starting to answer those questions and tell me what is going on in her head. I completely appreciate how far we have come.

Then a mom and her daughter come in, and the girl is a year or so younger than Beth. They sit near us and the conversation the mom has with her daughter blows me away. The language is so back and forth and so rapid. Of course I get a tinge of sadness, as always when I observe moms and daughters conversing, but now it sort of passes through. Then I launch into observation mode and take mental notes. She let her child order…my kid can order her friend rice next time. Her kid can’t keep off her knees…okay, so that part was Beth being developmentally appropriate so I will back off on that instruction. They go into more depth talking about the fish and I get some ideas about what else we can talk about. See…the work never ends. But in the end, the work is worth it.

 

The Advice I Wish I Received

“What we have here is a spectrum disorder.” That is how the news was delivered to me as my highly anxious almost 3 year old was itching to get the hell out of the evaluation center. The next bit of insight was, “I think whether you do behavioral therapy or Floortime doesn’t matter, but you just need to do something intensive with a lot of hours. It is a good sign she has language. She will need to have therapy in a very calm and quiet environment.” That bit of advice was followed by, “Remember, you know her best.”

With that, we were out the door and I was looking dazed and confused, because of course at the time I did not feel like I knew my kid at all and had no idea what to do with her. Their advice was minimal and so superficial it was basically worthless. But then again, we were at a center where they were behind schedule. Many more kids to diagnose were sitting in the waiting room. At least they were sitting, mine was screaming her head off, so much my mother had to push her in her stroller in the hall to try to calm her down.

Did they know she was different from most they diagnose from the start? Were they hinting at that in their “advice” … that piece about the “calm and quiet environment” haunts me to this day. Yes, she has more anxiety and sensory issues than many kids I have met on the spectrum. Did I just miss the hint? Then I tell myself, there was no way I could have known that her anxiety and sensory issues at the time would predict she would be a slow progressor. And there was no way to know that her personality makes really pushing and forcing her to do things a total backfire….that meeting her where she is and slowly expanding her was the answer.

What advice do I wish the evaluators would have given me?  What could have made a difference? Well, this, for a start:

1. Your child is on the spectrum, which is very wide. Some kids progress fast and others progress more slowly. There is no way to really tell what your child will do, so it is important to meet her where she is and help her make small steps forward. Try to remain in the present, because freaking out over an unknown outcome is not going to help her.

2. Co-morid issues are possible. Make sure all underlying medical issues are understood and consider how they can factor into behavior. (Note: In our case, dyspraxia and oculomotor apraxia ended up playing a huge role in her development.)

3. Because of her anxiety and sensory issues, pushing her too hard can backfire. You must learn to read her and understand her way of thinking and talking, and you will become her interpreter to help others understand her. Continue to listen to your instincts and use careful observation to hone in on her subtle cues. Floortime is helpful, because it teaches you to meet her where she is and slowly expand her to get her ready for interacting with other people. Most Floortime therapy is private and not covered by insurance, unless it is integrated into occupational therapy, speech therapy, and behavioral therapy. Be aware that many therapists say they are proficient in Floortime techniques, but they are not.

4. There will be many therapists involved in your child’s care, so insist on team meetings to keep everyone on the same page. On your child’s early intervention (3 and under) and school-based (preschool to school years) teams, she will have an occupational therapist (to help with fine motor skills, activities of daily living, and sensory issues), physical therapist (gross motor skills), speech therapist (articulation and general speech work), and behavioral therapists (help with coping and a variety skills which often overlap with the other team member’s goals). It is very easy for confusion and inconsistency to happen with so many team members, so insist on frequent communication between team members.

5. The bulk of early therapy will be performed by behavioral therapists and their aids (verbal work and academic readiness), because applied behavior analysis (ABA) has the most data in the literature and therefore is funded by school districts and insurance companies. Behavioral therapists can help with strategies to control anxiety (for example, use first we do this, then that language to manage expectations) and use developmental maps to form goals. You must decide what types of behavioral therapists you want…those who do more natural therapy (look up pivotal response, Denver Model) or those who do more rote drilling. In current literature, the field is tending towards more natural, play based and relationship based therapies integrated with the behavioral therapies (look up Floortime and RDI for relationship based therapies). In reality, behavioral therapists who are proficient in relationship based therapies and natural ABA are hard to find. Ask tough questions and don’t back down.

6. When something isn’t working, move on. Don’t be afraid to fire people. You are the parent and you make the decisions.

 

 

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

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Exploring Fountains (Longwood Gardens)

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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

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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