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.

 

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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.