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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Kids These Days

I was in Walmart checking out the latest window gel clings (I use them for motivation with Beth…long story, autism, blah blah blah) and there was a grandparent two aisles down going on and on in a very loud voice, “NO! NO! NO! You can’t have that! You already got so much for Christmas! I swear it wasn’t like that years ago! Kids these days you get everything! I told your parents…” And it went on, and on, and on, and on. And on. I was on the verge of shouting: “Just say no and move on already! Even if the kids have tantrums we get it. Hold your ground!” And then I wanted to shout, “By the way, the relentless direct marketing to kids and amount of products available these days at eye level in the store is a lot different from when you were young!” But I wisely thought better of it. That frustrated grandparent is not alone in her rant. There is no end to the articles and discussion on social media (Now that we have the internet! Damn internet! Back in our day…).

Case in point, this gem of an article, based on an interview of Leonard Sax who is peddling his book “The Collapse of Parenting”:

http://www.sacbee.com/news/nation-world/national/article56473378.html

Everything in the article and in the book summary on Amazon is nothing new. It is like the author just took everything that has made the social media rounds and crammed it into a book. Also, everyone seems to be forgetting that there is no way to go back and compare kids of old to kids of new, which means the opinions presented in any “kids these days” piece are highly subjective and unscientific. In my view, these types of articles and books are low on balance and high on trashing parents to sell a book and increase readership. So, I would like to take the above article point by point and give it some balance. Because you know what, I am sick of the parent bashing for profit game. Starting from the top of the article and working my way down:

  1. The kid that told his mom to shut up and no correction was made, the author making the case it is the norm.  To be honest, I cannot think of a single parent I know who would put up with that. Hey Leonard, who comes to visit you in your office?  Oh. Right. Parents who have trouble being authoritative with their kids. That explains it.
  2. The example of the kid making the education decision even though the parent knew it was wrong. Well the point started out it is common to get to pick schools, but I don’t really think the example is common at all. Are your clients rich? Are they choosing from a variety of private schools. What the hell is behind this example?  Next…
  3. Cellphone in the bedroom, talking at 2 am. Guess what. This has been happening for a long time. It was the same when I was younger…I hid under the covers and I was on the phone at 2 am (sorry for this revelation Mom). The only difference is the phone was connected to the wall by a cord. But I guess his main point was we should limit devices. Duh. The American Academy of Pediatrics beat you to that earth shattering advice Leonard. And I think we all have heard it already.
  4. Family Dinner. Okay, good idea. But somehow the article works in several topics related to schools, extracurricular, college prep too young, etc. into a long confusing point. Here is a newsflash for you Leonard..extracurricular activities are the norm now. Gone are the days where kids just go out and play all evening (yes I agree that is sad). You can try that with your kid but they will likely be lonely…all the other kids are at extracurricular activities! I agree this is a problem, but you can see why parents feel they must do things in the evenings that are more organized these days. They have no choice. And it is not always about beefing up a resume, it is about social opportunities.
  5. No ear buds in the car. This section of the article talks about no ear buds, it is a time for family, and then Leonard says, “My 9-year-old daughter and I know the lyrics to almost every song from ‘Mary Poppins’. ” Um, so you don’t have a code of silence in the car. And you listen to music together while driving. You know what, most parents do that. At least until the kid and the parents hate each other’s music. Then they listen to different things and the earbuds get whipped out, which has been happening since the invention of the Walkman in 1979. So I am not even sure what point you are trying to make Leonard. We’ll be in our car listening to Adele and the new Wiggles, while you are in your car listening to Mary Poppins. What is the freaking difference?
  6. Teach humility. Okay I am 46 and I started going down the list of people without humility from my high school class and it was long. Very long. I get your point Leonard, but can you make the point without making parents feel like shit? Maybe if you wrote a book on the importance of handling disappointment and provided many examples of strategies to deal with disappointment, then maybe I would give you some expert cred and buy your book.

So, that is that. My critique of yet another “kids suck these days and their parents suck even more” article. Here is my advice. Stop reading the parent bashing articles. Rely on a variety of friends, family, and/or teachers for guidance, advice, and new ideas. Because, you know, that is what we used to do in the old days. Geez. Experts these days.

 

Throwing Rocks in the Stream

There was a time when I doubted myself. Sure Beth loves to throw rocks in the stream, but, I thought, what good is this stimmy obsession? It was disconcerting to let her go so deep within herself at the stream when she was younger. Should I discontinue stream outings? She couldn’t really answer questions because she was so absorbed in throwing rocks. I wondered if I should worry about the flapping after each throw. Another problem was she kept taking swipes of water from the stream (she put her hand in the stream and then licked the water off) and there were health concerns. When the swiping became uncontrollable, we had to take a break from streaming until I figured out that chewing gum prevented her from sampling the filthy water. But we continued going after the gum discovery because it made her so happy.

I am no longer worried about our stream outings. Beth can answer questions even while throwing rocks now. She can point to things and is aware of her environment. She can absorb new information between the times she is doing her rock-throwing thing. She will pause to say cheese for pictures and I can work some other activities into the rock-throwing (e.g., feeding the ducks). Streaming relaxes her and makes her happy, and that is what the flapping is probably about.

We went to the stream yet again today, and I realized how much she is really learning now, and how far I have come as her parent and guide. What does she learn on a stream outing? Plenty…

I believe she is experimenting with sound when she throws the rocks. Listen.

I highlight language for Beth, such as prepositions, nouns, comparisons, actions. We work on following directions. I said these things today on our stream outing, and her concentration on my words was obvious: I threw a rock on the wall, your rock went in front of the wall, let’s go up on the wall, and now let’s throw rocks down off the wall. The big rocks make a low sound and the little rocks make a high sound. The ducks were eating by putting their heads under the water and look the duck is flying now. I have a thin rock that I skipping on top of the water (on the surface of the water). The big birds up there look like eagles. Let’s go on the wall, let’s go to the shore (where the land is, where the dirt is), and let’s go that way. The rock went far, oh that one didn’t go far it fell near us, that is a small rock, that is a big rock, get the clean rocks, and not those rocks because they are dirty. Stop and come back this way. Do you see the school bus? I hear the plane…where is the plane? Look a dump truck! Where is the duck? What color is the bird in the sky? Look at the stick behind you (she picks it up, laughs out loud, throws it). All the while, she is having a blast.

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Throwing rocks at the stream is also great for physical development. There was a time not too long ago she couldn’t crouch down, couldn’t hold something over her head, was unstable when walking on the rocks in the water, wouldn’t crouch and twist to get a rock. Now I see she can do so much more than she used to and it is amazing what playing in the stream has done for her.

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Yes. It is okay to play in the stream, throwing rocks over and over, and flapping after each throw. It is more than okay. It is exactly what she needs.

 

 

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.

 

SHHHH-Don’t Tell Anyone. I Have a Child with Autism and I Have it Easy.

A story or status post pops up on my Facebook feed from one of the many autism parent bloggers I follow, and it usually falls into one of these common autism parent themes:

  1. Sleep Issues: The kid won’t sleep! or The kid woke up in the wee hours…again! or Thank God for Melatonin.
  2. Meltdowns & Aggression: Wow, that meltdown was epic and over nothing! or Strangers were asses today when my kid was melting down. or I am tired of being hit, bit, kicked, etc.
  3. Potty Misery: I can’t toilet train this kid. or Why does this kid hold it for days?
  4. School Issues: IEP meetings suck. or The school sucks. or Oh-oh…the school number just popped up on my screen-what did he/she do this time?
  5. Co-morbid medical issues: Nightmare at the doctor today. or Horrible ordeal with lab testing today. or Trying to get medicine in my kid is the worst.
  6. Food issues: My kid won’t eat and we are off to the feeding clinic. or OMG, all the time I am spending on this special diet is exhausting!
  7. I am Going Nuts: Can’t wait for the kid to go back to school. or I am hiding in the bathroom because I can’t take it anymore. or Why won’t this kid stop doing [insert massively annoying obsessive activity/vocalization]?

Honestly, it is getting harder and harder for me to relate to many of the posts I see come across the feed, because many of the problems we used to have are not problems anymore. Beth is still very delayed across the board (physical, fine motor, speech, social, and play), is a “slow progressor,” she is a wanderer, and she can have high anxiety in certain situations. BUT, on the very positive side, she is a great sleeper now, meltdowns and aggression are a distant memory, she is potty trained, we are happy with our school situation (homeschooling), she is healthy, she is a good eater, she lets me guide her, I enjoy being with her, and I see signs of progress every day. I am grateful. I am at peace. I feel lucky. And…I feel a bit guilty.

Beth Making Christmas Ornament Gifts, 2014

Beth Making Christmas Ornament Gifts, December 2014

Beth, Florida Christmas Trip, 2014

Beth, Florida Christmas Trip, December 2014

Beth, Sanibel Island, Christmas 2014

Beth, Sanibel Island, Christmas 2014

Beth, Making Soup, January 2015

Beth Making Soup, Part of Homeschooling Literature Assignment, January 2015

Beth, Homeschooling Independent Hand-Use Activities - January 2015

Beth, Homeschooling, Independent Hand-Use Activities – January 2015

Reading Adventures on the Spectrum

It was a rocky road to reading, but last night Beth was all smiles while reading sight word books with me. I wanted to pinch myself. She is reading and she likes it! Wooooohoooooo! How did we get here?  Glad you asked. Here is my video blog on our reading adventures (and misadventures):

What Made Beth Stumble While Reading

-Not having appropriate set-up while reading (needs book upright, appropriate seating or lying down while I hold the book up for her, see this post for details http://wp.me/p2OomI-14s)

-Fancy font (like “a” and “g” instead of plain font that looks like a hand written letters)

-Small font

-Words too close together

-Using just her eyes to guide her reading (she needs her finger to help guide her eyes)

-Multiple lines of text

-Long sessions (visual scanning is hard work and short sessions are a must)

-Working on the same books over and over (leads to guessing and stuck expressive language)

Products That Worked for Beth

-Sight word readers that addressed all the above stumbling blocks.  The best books for her were the Lakeshore Learning non-fiction readers because they had engaging pictures and little pictures for the harder words, which reduces frustration (Lakeshore sight word books, level 1, non-fiction , Lakeshore sight word books, level 2, non-fiction ).  These other sets are also good: Scholastic sight word readers and Harcourt Trophies K readers .

-Weekly Flashcard reviews. We used these: Sight word flash cards

Samples of Beth Reading:

 

 

 

 

What Will You Do While Kiddo’s in School?

 

1st Day of Kindergarten

1st Day of Kindergarten

Beth started Kindergarten in public school today (after I homeschooled her for 2 years and held her back a year). Now I have a staggering 3 hours to myself every week day morning. About everyone I know has asked me what I will be doing with “all that time.” Well, a lot of things have fallen by the wayside, so the options are endless. Maybe I could…

Use one of these…

 

…to clean this:

Sample of crap stuck to my floor

Sample of crap stuck to my floor. Stretch goal: clean the floor more than 1x a year.

Use one of these…

shovel

to shovel out this:

Sample of crap on the floor of my car

Sample of crap on the floor of my car.

or this:

This was once my pantry

This was once my pantry, and it would like to be a pantry again.

Use one of these…

The little used dresser

My neglected dresser

to store these:

Hey, maybe I will score a couch too if I put the laundry away.

Hey, maybe I will score a couch too if I put the laundry away.

Use one of these…

dust mask

to dust my house (since I am highly allergic to house dust….no, really I am):

Representative dust sample

Or I might get really crazy and use this…

gas mask

to tackle that pink smelly stuff in my shower:

Ewwww....

No words for this, but “Ewwwww….”

Did I make any headway on the above on this first day of school? Nope. Nada. Zip. Instead I did this…

Envelope stuffing for school with other moms who weren't ready to let go

Envelope stuffing at school with other moms who weren’t ready to let go.

and this…

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Go me. 3 mile walk in the park while fielding texts and phone calls from concerned family members and friends. Yes, I am fine…

Forget the housework. Sure I will do more than I have, but I am focusing on connecting with friends and working towards a healthier me. That trumps Cheerios on my car floor and pink moldy stuff in my shower any day.