Going, going, . . . gone Gluten-free!

For the last nearly-year I've been contemplating taking Josiah off gluten to see if it helps any with his sensory regulation. He's already dairy and soy free (had been since about 6 weeks old) and while that seemed pretty easy at the time, the idea of cutting gluten ALSO was rather intimidating. I made lots of excuses for a long time -- (1) he's too skinny; if he refuses to eat gluten-free stuff and loses weight, that wouldn't be good (2) there's just too little available in dairy AND gluten free (3) I should do it with him but I'm not ready for that yet, (4) I just don't have the time or patience; I've got bigger things to worry about. When he started to include "Jesus, please help me to stop doing bad things and help me do what is right" in his dinner-time prayers, I knew I had to at least try. I can't guarantee it will help, but if I thought there was a chance and just didn't do it, I'd always wonder and regret not having tried harder to help him.

So about three weeks ago, we took him completely off gluten. For the last few months I'd been at least trying to introduce new snacks and foods that were gluten-free so he had some new "favorites" he would get to keep. We found GREAT alternatives for pasta and started eating more rice and more whole foods. And I broke out the Deceptively Delicious cookbook to see if I could find more ideas for hiding nutrition in stuff he already liked. It's been going pretty well, and I have to admit that it has been a lot less difficult to adjust to than I was making it out to be. Here are some things I've learned so far:

• A gluten-free diet really demands either an excellent local bakery to supply you with quality gluten-free bread, or a breadmaker. I baked the first two few loaves of bread myself, which is funny considering that after a seventh-grade "bread making" science experiment taught me only that I never wanted to make bread by hand again in my life, I swore never would. Ah,, what you won't do for your own children! My recent experience only served to confirm the disdain I held for breadmaking! At the suggestion of our OT, I bought a Bob's Red Mill gluten-free bread mix -- but without a breadmaker or kitchenaid mixer (which the package specifically recommends, by brand, that you use) I was woefully underequipped for such a project. My poor old hand-mixer complained profusely about having to try to muster enough strength to mix (knead?) bread dough, so in the interest of not spending lots of extra money before we know that the diet will be permanent, I simply upgraded from my 125-watt hand mixer to a 250-watt mixer. The new mixer didn't complain about the workload, but the dough climbed the beaters and would not be held down. It became a two-person project -- my husband stood nearby with a spatula in each hand pressing the dough down to prevent it from climbing out of the bowl via the mixer while I held the mixer for the required 3 minutes. The loaf hadn't even made it to the oven and I was already reinstating my "never again" proclamation. When the first loaf rose so high it started to burn due to contact with the oven's TOP elements (yep, we're talking a good 9 inches of loaf rising above the edges of the breadpan), I pulled it out, sliced the top off, lowered the rack and stuck the sucker back in to finish baking. Both that loaf and the better-mixed loaf that followed a week later came out of the over in rather strange shapes. A venting session at my mom's group prompted a mommy friend to lend me her breadmaker, and what a godsend it has been. We have made only one loaf in it so far, but it was the first loaf I could actually enjoy the taste of because it hadn't been embittered by the frustrating process of making it by hand.
• Even when you've succeeded at baking the bread without driving yourself to need a room with padded walls, gluten free bread just doesn't taste the same. It is mostly an issue of texture, though there is also a strange sweetness and aftertaste to it that makes it hard to adjust to as well. I have discovered, however, that these differences are far less noticeable when you use the bread in alternative ways -- toasted, french toasted, and bread crumbed for example. Using a recipe adapted from the Deceptively Delicious cookbook, I cooked up some gluten-free Pumpkin Spice French Toast that was so tasty my husband enjoyed it (see paragraph below for more on my husband as the barometer of success in gluten-free cooking). I toasted it for peanut banana sandwiches that were excellent, and I chopped up several chunks to make bread crumbs for adding to meatloaf and using as breading on rice balls. Next up: homemade chicken nuggets with gluten-free breading and some grilled turkey sandwiches! JoNo hasn't really adjusted to the new bread, but he doesn't ask too frequently for the old bread anymore so it's working out fine.
• Lasagne noodles are great look-alikes for egg noodles in chicken noodle soup. Josiah's all time favorite food (besides, perhaps, scrambled eggs) is Wolfgang Puck's Chicken Noodle Soup. While our buddy Wolfgang does make an organic line of soups, he does not make a gluten-free line -- in fact, I haven't found a gluten-free canned chicken noodle soup in any of our area health food stores. So I was left to recreate the soup myself. After a few tries, I finally got the taste down, but none of the spiral shaped gluten-free noodles were cutting it for JoNo. In desperation, I finally bought a box of lasagne noodles, cooked them in the soup, pulled them out and cut them lengthwise, and then into shorter lengths in hopes they would look enough like the noodles he was used to to pass muster with him. Eureka! Even my husband, who is a ridiculously picky eater and does not have to eat gluten or dairy free, enjoyed the soup! Between his uncharacteristically-nonmasculine unwillingness to eat any variety of food placed in front of him (how I sometimes wish I was married to one of my friends' "eat anything on the plate" husbands!) and his quiet-yet-unyielding ability to make such particular tastes known, my husband has really become the bar by which I measure the success of my "passing-off-an-allergen-free-dish-as-normal-food" efforts. If he eats anything beyond the test bite, I've got a success; if he asks for it again, I've got a phenomenal success; if he even takes the test bite in the first place, I know I've got something that will probably succeed anywhere but at home :) Now we're on the hunt for gluten-free alphabet pasta to add to vegetable soup for a good version of ABC soup. Any ideas?

As with anything, adjusting to this new diet has been a process. It's unclear as yet just how much this diet change may be helping, if at all. I have noticed he's eating more food at each meal most of the time, but that could just as easily mean he had a growth spurt that happened to coincide with the diet switch. We're going to give it another three weeks at minimum, and if we're still unsure whether it's really helping, we'll "challenge" it with a bagel or something and the answers should be obvious. Stay tuned for more on that!

Confidence Undermined -- and slowly being restored with some "potty talk"

One of the biggest challenges for me with having a special needs child is the hit my confidence took. His sensory issues have caused me to second-guess everything I felt I knew about child behavior, rules and boundaries, and discipline. Holding firm boundaries consistently was never (and may never be) my strong suit, but during his first year I was at least confident about which boundaries to try establishing and how to enforce them. When I became aware of his sensory issues, I had hard time determining when something was a sensory issue and when it was a discipline issue. While I didn't want to shape a child who failed to develop self-control and discipline, I also didn't want to enforce unrealistic expectations that were made impossible by his sensory challenges.

Oh sure, there are books to help you determine what behavior should be dealt with and what a typical four-year-old will display and then grow out of -- but all of that seems to be a bit out-the-window when you're dealing with a special needs child as opposed to a "typical" one. (Caveat: believe me, I know there really is no such thing as a typical child; at the same time, I could see a marked difference in my confidence regarding labeling things "typical" and questioning that label once I learned of Josiah's challenges.) While I hoped that reading and learning more about SPD would help make those distinctions more clear, that wasn't my initial experience with the information. One of the hallmarks of SPD is inconsistency in sensory-related abilities and arousal regulation; in other words, some days his sensory system seems to click and work fine while other days it is entirely out of whack. This only complicated the effort to dstinguish between what he was able to do and what he was not -- he genuinely was unable to do some things on a given day that he had done relatively easily only a day or two (sometimes even hours) earlier.

One of my biggest struggles in this area was regarding potty training. I use the past tense there not because JoNo is finally potty trained but because it is becoming less a struggle over confidence in my mommy intuition. From around 18 months, JoNo was interested in the potty -- unlike many children, he was never afraid of it and still thoroughly enjoys flushing it for anyone who will let him. Despite all this interest, and loads of encouragement from us, he never seemed all that interested in leaving diapers behind and actually USING the potty consistently. We tried all sorts of things, from the no-pressure approach to the sticker approach, even the "see, your friends at preschool don't wear diapers and use the potty" approach. We even bought a "potty watch" that lit up and played music every 30, 60 or 90 minutes to remind him to use the potty. Nothing made a difference. And while I would encourage more heavily at some times than at others, I always held back a little for fear it wasn't so much a matter of will but a matter of ability.

In the last two weeks he has suddenly shown tremendous interest in wanting to wear underpants and use the potty so there will be "no more diapers for [him]" as his Potty Book says. So that's exactly what we've done, at least around the house. And it's meant changing his outfit from the waist down a number of times a day. In observing him over these last two weeks, I've discovered that my instinct about it has been right all along. It isn't so much about motivation but about ability -- even now, he seems motivated but just not able. He has been consistently unable to get to the potty BEFORE nature has begun answering its call, but when he wants to he can stop it and rush to finish in the potty. And there is absolutely no regularity in timing -- sometimes he'd go hours between potty breaks, while other times he'd use the potty 3 times in under an hour.

All this potty talk to say that I'm feeling a twinkle of renewing in my mommy confidence. Like a bud just sprouting in the spring, I've still got a lot of growing to do, but through becoming a student of my child and really researching him individually (as well as SPD more generally), I'm finding my confidence returning bit by bit. I'm more able to recognize what he CAN do and maintain those expectations, and more able to handle the things he really can't do. I'm even finding more patience in handling those "gray area" issues where it is still unclear where his ability on a particular task is on a given day.

Our first therapist used to tell me that if discipline just wasn't working, it was a sensory issue -- and while that was helpful at the time, and is still a good general guide to making the distinction, it paralyzed me in some ways. When I could tell it was a sensory issue, and especially when I wasn't quite sure whether it was or wasn't, I was at a loss for how to handle a problem behavior. I would err on the side of doing nothing and slowly watched him develop habits and behaviors that went beyond mildly annoying. I finally got fed up enough, and learned enough about what and with whom I am dealing, that I've begun to find a better balance. I'm more and more finding myself able to draw boundaries and help him succeed at them even when the ability level for the task is unclear. And the empowerment and confidence-boost from it is encouraging!

Sensory gift updates

I actually started this post in mid-Januray to report on the sensory-related birthday and Christmas gifts Josiah got over the holidays -- but after working on it for nearly an hour (adding fancy links and everything) it disappeared into the black hole of cyberspace and I was so frustrated I've been avoiding blogging ever since. But the guilt (and pressure from my lone follower) has finally caught up with me, so here I am starting again:

The sensory related gifts Josiah received over the holidays were met with mixed success. Here's a rough rundown:

• Sit-n-Spin -- we requested this from the grandparents for his birthday because his OT suggested it might give him some good vestibular input and is a good indoor toy for the rainy months. We'd seen him use, and seem to enjoy, this at friends' houses a time or two and thought it would be great. I'm discovering, though, that the intrigue of some toys wears off completely simply by bringing the toy into the child's own house. (Wooden train sets worked this way as well, but that's a story for another day.) Long story short, he's more interested in using it as a step-stool (which is a bit precarious) or an obnoxious boom-box to dance to instead of spinning on. Oh well -- we'll hold on to it and keep trying!
• Ned's Head -- I found this at a discount store and thought it might make a great tactile toy. The idea is to use only touch to find the right object inside Ned's Head -- I thought isolating the tactile sense could help boost discrimantory skills in that area, and the game element might help boost his self-control (he's a tactile seeker, wanting to touch everything he ever sees as a primary way to explore it and has a really hard time when he has to make sense of something without getting to touch and hold it). The only initial struggle we had involved the incredibly large plastic ant and rather realistic looking plastic spider that were included as objects to seek inside Ned's head (along with a "sticky" sucker, a "dirty" diaper, a rubber alien, a large plastic screw, and other "nonscary" items). The first couple of times we tried to play it, he refused to put his hand inside for fear of the bugs biting him, even when I showed him they were out of his head and safely contained in the box. I put the game away for a couple of weeks and tried again, this time removing the bugs before he even saw them. This time he eagerly reached in to find all sorts of goodies -- but he also remembered about the bugs and wanted to keep his eye on them, so we kept them out of the box and sitting off to the side. Several games later, he really enjoys this game and even plays with the bugs inside. He's gotten much better at not peeking and at finding what he's actually looking for instead of just grabbing the first thing he touches. While it wasn't an instant hit, this one has definitely grown on us and become a very fun sensory game!
• Razor Jr. Scooter -- this was a hit from minute one! Our thinking was that it would help him develop added balance and learn to manage his vestibular input and motor-planning while he's in motion. With the weather yucky, we haven't used it outside yet, but he's gotten great at riding it up and down our wood-laminate hallway. Between this for balance and the Smart Cycle (see below) for pedaling, I think he might be ready for a tricycle this summer!
• Indoor Exercise Trampoline -- jumping is one of JoNo's all-time favorite activities. Grandma has a huge backyard trampoline at her house that he puts to great use when we are there, and the trampoline is his favorite part of tumbling class. We thought we could not go wrong with this one! We were wrong. Apparently trampolines are only interesting outside our own house as well (see Sit-n-Spin explanation for more details on that phenomenon). He does enjoy it more when one of us bounces with him, and I think it's because our added weight makes it more springy -- I wonder if there's some way to loosen the springs without jumping on it myself for hours a day. Any ideas?
• Handbells -- While not intentionally a sensory-gift, it will work out that way, and I love them! Grandma surprised us with these for Christmas, and while my sister-in-law isn't so crazy about the extra noise they'll facilitate in her house (they got a set for their sons as well), I adore them for a number of reasons: (1) I played in a handbell choir in high school, so the nostalgia of them made them automatic winners with me, (2) they are a full octave, so you can play a few actual songs and have them sound like actual songs, all while learning at bit about music theory, (3) they'll give Josiah some good audio input. We've noticed that as we've worked on desensitizing his vestibular and tactile systems, his auditory system has gotten a bit more sensitive. We've always kept a box of child-friendly musical toys (tambourines, plastic clarinets, maracas, drums, etc.) in the house, and he used to love them but seems to shy away from them of late. Perhaps it is our lack of talent, though that never seemed to bother him before. Hopefully these bells will help encourage him to allow more audio diversity again as well.
• SmartCycle -- Eureka! This has been one of the best investments toy-wise we've ever made! There's really nothing NOT to love about this one. We originally considered it because Josiah has trouble coordinating his motor planning, especially when it is combined with vestibular input, and despite lots of interest and many attempts had still not learned to pedal a tricycle. We thought getting him this Smart Cycle would give him a stationary (eliminating the vestibular component) way to practice the motor planning -- and the fact that it is a video game, he might be motivated to try it out more often. He LOVES it! He spent far too much time on it that first week or two for me to even want to admit :) (mommy guilt over too-much-media-time is strong) but I'll tell you what, he can pedal like a champ already. His struggle was learning to keep moving his legs in one direction when he would hit resistance or come to the end of his range of motion, so he'd do half a turn forward and half a turn back. The Smart Cycle has a back-up beep, one that is just as annoying as any construction vehicle's back-up beed, that functions like a biofeedback device so he could tell when his legs were pedaling forward or backward. Over time he even learned to change direction and drive backwards when he wanted to, and then was able to begin learning to steer. Once the weather is more consistently dry and less chilly we'll put him back on his tricycle to see if the skill set transfers, but for now, we're impressed with the progress. And best of all, the games he plays on it are all education -- teaching him letters and numbers, counting and math skills (like more than, less than; basic addition, etc.), visual spatial skills (puzzles and mazes), and animal facts (Diego's wild animal adventures and a dinosaur game that lets you x-ray them to see their bones and hear what they ate, how big there were, etc.) We have thoroughly enjoyed this one!

Christmas Programs

Having started preschool and being a regular attender at our church's children's program, JoNo was eligible to participate in two different Christmas programs this year. He absolutely LOVES to sing, and is actually pretty good at it (he can keep the beat and tune quite well and remembers the words to songs and stories remarkably fast and effectively). With his tendency to get overstimulated easily, we weren't sure how things would go but we wanted to let him try.

The church program was a huge event -- our church holds four different services each weekend, with regular attendance over 4000 every weekend. The Christmas program was a huge event as well -- very large stage, with risers and lighting and monitor speakers and dozens of kids. It was the program we were most concerned about as far as sensory overload.

The preschool program was a relatively small affair, involving only the children in the preschool classes at his school (about 15 total). The program took place in his preschool classroom, which meant he was used to the room but it was packed with FAR more people than it really should contain (parents all sitting in preschool chairs four deep along one wall with just enough room in front for the kids to file in and stand on boxes. Of the two, this was the one we thought he'd breeze through.

JoNo is always surprising us! He did AWESOME at the church program and loved every minute of it. Oh sure, he got distracted with hugging the girl next to him and showing off his socks to everyone and even poking at the girls face to play with her. But he loved every minute of it -- not a hint of overload, seemed completely comfortable, sang his little heart out. And he still asks when he gets to sing on the big stage again!

The preschool program was another story altogether. Whether it was the break in routine, the crowded feel of the room, or just that he was having an off day (the gym owner did ruffle his hair when he first arrived, forgetting how much JoNo hates having his head touched) -- he was NOT enjoying this program. In fact, at one point he sat down on his box while the other kids were singing "We Wish You a Merry Christmas" and winced at every loud "wish" the children belted out. We treated him to a cookie and some juice when it was all over with.

You win some and you lose some, I guess. It's just funny how so unpredictable these things can be. We all have up days and down days, some that are easier or harder than others to cope with, and I suppose the same must be true for him and his SPD. On the one hand, it really gets to me that I feel like I don't know my child well enough to know what will set him off and what he'll enjoy. On the other hand, it reminds me to let him take the lead and to keep encouraging him to try new things because you just never know what he'll enjoy and really succeed at. And I'm definitely glad we gave hin the opportunity rather than sheltering him from it in case it overwhelmed him. We'll definitely do the church program again next year, and we'll support his efforts at the preschool program again next year as well. Who knows, next year the results could be completely opposite.

Hindsight is always 20/20

As we were sorting through some older home movies of Josiah the other day, we came across one that set me back a bit. When he was about a year and a half old, we used to play this spinning game with him, where I would sing about spinning and he would "spin" around. I say "spin" because he would only turn about 1/2 turn, then pause (off balance a bit) and try to turn in the other direction, only to repeat the process several times. Once in a while he'd make a complete turn.

He was always smiling and enjoying himself during this game, and at the time we thought it was so cute and quirky. Okay, it's still cute and quirky, but watching that video the other day, instead of just seeing my cute quirky toddler, I saw a kid with obvious SPD trouble in his vestibular system. As he'd stop spinning, his posture and eyes told the story -- his brain thought he was still spinning and balancing was far more difficult than we ever imagined.

Grandpa Z got him a sit-and-spin for his birthday, and while he loves to make it play music and light up, and even use it as a step-stool, he isn't so keen on actually spinning on it. He'll do a turn or two at my insistence, or as part of his indoor obstacle course, but always reluctantly and only with the promise of something else he likes when he's finished :)

He's doing GREAT on the Razor Jr. skooter we got him, though. He mostly rides it indoors (we have wood laminate floor everywhere except the bedrooms) and is doing pretty well, pushing with one foot and actually picking up that foot while it glides a foot or two down the hall.

A few more sensory-themed toys are in the works for Christmas -- stay tuned for updates on how those go over :)

Small Successes

We're learning so much from our OT and are seeing small successes already!

One of the things that often plagues SPD kids is oversensitivity during haircuts, which leads to tactile defensiveness and meltdowns! It doesn't help that one time the hairstylist knicked his ear with the clippers. Even though he sometimes wants to get his haircut, and will even ask to go, he only lasts about 3 minutes before all the combing and tugging at his scalp drives him crazy. At that point, haircutting becomes quite the struggle, if it is possible at all -- he either screams, refuses to hold still, or even hits at anyone trying to comfort him or cut his hair. We've tried everything -- distraction (books, movies, toys, candy), rewards (bribing him with a trip to the dollar store or a new toy or more candy), going really slowly and talking him through it at every step, trying to avoid his triggers (the cape around his neck and any touching of his ears at all), etc.

Some sessions have been more successful than others, but none of the have been comfortable, and some have been downright miserable (screaming till he nearly vomits or at least driving EVERYONE in the place crazy). We both end up covered in sticky sugar, hair clippings, sweat and tears, and a marginally crummy haircut. We do haircuts as infrequently as possible (every few months) but he's got so much hair that we really can't just let it grow, so it needs to be done.

On his birthday (what a mean mom, eh?), we wanted him to have a nice haircut for his party and pictures. We had a friend's mom (who has worked off and on as a hairstylist) come to the house and tried all our new coping tools. He was in his own environment with some distraction (a movie and lots of conversation about it). We skipped the cape, let him sit in his favorite chair, and were very careful to guard his ears (he'll let mom or dad cover them while stylist clips around them). And he got a good 5 minutes in before he started to get upset enough to be uncontrollable squirmy and a bit combative. That's when I pulled out the weighted blanket to lay across his lap and chest, and applied pressure across his shoulders while dad covered his ears. And I dare say we got the best cut he's gotten so far! It still wasn't without work and a bit of frustration on his part (and ours), but he never got to tears, and his haircut looks good! SUCCESS in our book!

Sleep (or rather, falling and staying asleep) has always been a big struggle as well. SPD often involves difficulty regulating arousal levels -- being oversensitive to sensory input means you go from mild to extremely overstimulated very quickly and have a hard time calming your nervous system back down. JoNo has never slept fully through the night and still comes to bed with us by around midnight most nights. He still wakes up another time or two, but at least we don't have to walk down the hall to comfort him back to sleep again, and we all fall asleep faster. We would never leave him to cry himself to sleep but we do wait when he first wakes to be sure he needs comfort to get back to sleep -- and only VERY rarely is he able to get back to sleep on his own. Instead, his cries for comfort escalate until he's hysterical or we've come to comfort him.

I can count on one hand the number of times he's slept past 1:00 without waking. Since we've been using the weighted blanket, he's had three nights (out of eight or so) that he's slept past midnight (twice until nearly 2:00 am and once until 3:30 am)! Obviously there's still a long way to go, but we'll take any progress we can get!

Win an Ergo Carrier!

http://www.alongfortheride.biz/Win-a-Free-Organic-Embroidered-Ergo-Baby-Carrier-s/49.htm

Best of luck!