Tag Archives: sensory integration disorder

You might be an autism parent if….

6 Aug

You might be an autism parent if...

You put chocolate hazelnut butter in the nutribullet to smooth out some of the natural graininess to make it more palatable for your texture-sensitive kid.

(Note:  this experiment would have worked a bit better with a larger amount of this tasty stuff.  Unfortunately, I didn’t even think of getting him to try it again until I had polished off almost the whole jar. It’s not like I went weeks without that occurring to me.  A jar of Justin’s Chocolate Hazelnut blend only lasts a couple of days, at most, around here. It’s irresistible. Really. Our supermarket and Target both carry it, and the Maple Almond (so good on cinnamon toasts). You can also find it on Amazon: Justin’s)

He did ok with the Chocolate-Hazelnut, on warm toasted baguette, but not that enthusiastic.  He did eat three pieces of toast (small pieces) slathered with it, though, and that’s freaking amazing.   I also got him to eat three (individual raviolis) Amy’s frozen Ravioli even though they clearly had some degree of tomato sauce on them (I scraped off as much as I could. How am I the only person in our family who has zero Italian roots and I’m the only one who will touch a tomato, or sauce?!).  YES!

I’m still finding protein and fresh veggies to be a challenge for him, as he won’t eat nuts (Barney Butter thankfully is smooth enough, and available at Publix and Target(woohoo!) that he accepts it as a peanut butter substitute, as PB is off our menu due to G6PD Deficiency), can’t eat legumes (again, G6PD Deficiency is a factor) and he is mostly vegetarian (we are not, but he just can’t deal with the tearing and chewing of ANY meats), so he consumes quite a bit of milk and I make him a super-smoothie every couple of days with bananas, berries, hemp seed, almond butter, chia seed, yogurt, etc..to try to get at least some variety, as far as nutrients go, into him. He also really likes Life cereal and Cheerios, so at least those are fortified. He is growing and healthy, and the kid has a brain on him, so this seems to be working. Of course, I’ll never stop introducing new foods to him and now that he is older, he doesn’t protest but instead tries everything (serious progress!), so it is easier.

You can share your “You might be an autism parent if…” moments on two fantastic facebook pages:  You might be an autism parent if. and one of my favorite special needs parenting resources/communities:  Shut Up About Your Perfect Kid (seriously, if you don’t have the book, you NEED their book AND their Facebook community/page.  This was the first thing I read when I realized that this journey was veering way off path (and at the time, through what looked like an impassable thicket, plenty of prickers, nests of dangerous beasties, etc)…  Here’s a link to the book on Amazon: Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children.

I also got him to eat fresh cherries (not fresh picked, fresh from the supermarket… we have been mostly housebound this summer… long story for another time) WITH the stem and stone intact!  So I’m not rocking the Lady Macbeth manicure from pitting the damn cherries this go around.  Here he is, after I carefully demonstrated and gave him instructions on how not to break his teeth but still enjoy a good, sweet, juicy cherry.

untitled-2.jpg

A frozen cherry did not fare as well:

Found it.

Peace,

Bek

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Adventures of The Sneaky Chef in the Cave of the Aspie Kid

15 Jul

Boy Genius

A couple of months ago I intended to blog on this fabulous book (The Sneaky Chef) we had bought, hoping to increase nutritional value for our whole family, particularly Alex. I mentioned Alex’s food quirks and “rules” a little in my post “Islands in the Stream” and promised to check back in about the book.

Well, here I am. A little older, a little wiser, a lot more cooking under my belt than I typically do. I enjoyed my experiments and the creativity exercised in the kitchen. I really enjoyed that because of my abnormal level of fatigue and pain (yay, isn’t arthritis fun!) Jeff did the dishes and the grocery shopping so I could focus on inoculating tasty and fun foods with extra nutrition to make one of kiddo’s primary personal goals (and one of our goals as his parents) come to fruition.

Alex wants to grow up big and strong and healthy.

And we want him to grow up big and strong and healthy as well. (By big we mean: Not frail)

We have always avoided the concept of “the clean plate club” as in my million plus years of Weight Watchers meetings I had seen and heard of the fallout of such parenting & nutritional methods. And, as someone who has been on a diet since 3 weeks old (yes, you heard me: weeks) and I am still experiencing the fallout from that (I’ll cover that in another entry, at another time. Promise.)

So I am particularly sensitive to not taking the warden approach to nutrition. Our goal for Alex, in all aspects of his life, was to give him the tools to be able to make the best decisions, for himself, in his life. This applies to work, health, his personal life, etc… I do want to thank Early Intervention for asking us the important question of what we want for him and his life. We learned to keep it non-specific enough that we don’t suffocate him with our expectations, but enough that we can build goals. Good and important stuff.

So, we decided to start “Sneaky-cheffing” more nutrition into his regular foods and he even helped me (we both got so messy! he didn’t freak out completely! it was wonderful!) prepare a few recipes.

But guess what we found out? Our experiment reiterated that kiddo will probably never eat a casserole or anything remotely resembling a casserole- even homemade macaroni & cheese with real cheese rather than packet of powdery stuff is too much of a multiple texture experience for him. He’ll eat Annie’s Mac n’ Cheese but not the stuff I spent so much time planning and prepping and cooking. He also won’t eat any whole vegetables other than carrots. Think about it: Carrots are the same consistency all the way through- I can’t think of another vegetable that does that…Maybe peeled and cooked potato chunks-but then there’s a certain graininess, and with sweet potatoes a certain stringiness… Anyway, this goes beyond regular little kid dislikes and pickiness- these textures actually make Alex dry heave (or barf. Depending how deep we are into the meal.)

Some ideas from The Sneaky Chef worked beautifully- the idea of adding extra nutrition everywhere has stuck with me- even as far as adding water to a recipe (or instructions on a box)- I don’t add water (well not every time, I still need to work on the planning thing!) but use a nutritious liquid instead. I learned that blueberry juice doesn’t curdle milk and makes a fun colored alternative to plain white milk (or soy milk…Alex seems to change his preferences every couple of weeks)…

I also learned that we can sneak some of the purees suggested in the book into some foods, without objection.

Then Alex saw the jars. Ok, when I first started using the book I made my own purees. But as backups we had the recommended jars of baby food (not all of the purees are available as baby foods, and the homemade purees and mixes are much cheaper and not difficult to make and freeze).
Alex saw the jars. I took a deep breath. He voiced a little panic about baby food being for babies.

So I asked him (remember, he is deeply logical and literal and rule based. Think Spock to the nth power):
ME:Who eats baby food?
ALEX: Babies
ME: Are you a baby?
ALEX: No. I’m a big guy. BIIIIIIIIIIIIIIIIIIIGGGGGG! (makes war face and flexes and almost knocks himself over)
ME: What do you eat?
ALEX: Big Guy food.
ME: If you eat a cracker is it Big Guy food?
ALEX: Yes.
ME: So if you are not a baby and you eat the stuff in this jar then what is it?
ALEX: I’m not a baby!
ME: That’s right! You are a big guy! SO, if you eat the stuff in this jar & you are not a baby then the food in this jar cannot be baby food! It’s only baby food if a baby is eating it.
If a BIG GUY is eating it, it’s called “PUREE”!
ALEX: I like puree!
ME: YAY!

So, after all of our experiments trying to sneak “puree” into his foods we found out that Alex doesn’t like it mixed in. He likes it plain and separate from his regular food.

Of course, he has to announce, at the start of the meal, “It’s only baby food if a baby is eating it. If I eat it then it’s puree!”. Seriously. He says it every time.

Perhaps, if he adjusts to the taste this way, he’ll be more accepting of various textures eventually. Until then, I’m happy to serve him his vegetables in this manner.

A wise person once said, in regards to parenting, “Pick your battles”.

As he slugs down jars of summer vegetables (a sneaky way of disguising what actual veggies are in there- summer veggies are ok, broccoli & spinach, etc -not so much. Don’t forget, on top of our Adventures with Asperger’s, our Alex is still a kid. Sometimes, I guess that maybe it’s like having twins.) I realize that we both are winning and we can focus on moving forward to bigger and better things. I try to point out that it’s like a bisque, but he corrects me “Puree!”

I still think The Sneaky Chef is totally worth the purchase (Amazon has copies from <$2.00 + shipping to brand new…any which way, I think it's worth it) it was a great jumping off place for figuring out some small ways to enhance nutrition for the whole family.

(We have been getting various supplies through Amazon.com lately- yes, the Prime program is awesome! They do carry Earth's Best in 12 packs and Annie's Mac n' Cheese as a 6 pack- actually, with Prime, it winds up being less expensive than our chain supermarket and they are delivered right to our door. I'll post a link to my amazon store soon, where I'll have all of the things I have mentioned with links, to make things easier for everyone!)

xo
Bek

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Even scarier than I imagined….

29 Mar

We have had the Monsters Vs Aliens release weekend on the calender since boy and baldguy first mentioned it.  Alex was so very excited and we promised him that as long as everything went smoothly we would take him to see it on Sunday.  Saturday went really well. So this morning, off we went to the 10:45 showing at AMC Merchant’s Crossing in North Fort Myers.

Despite some rather negative reviews, I was going along with the boys so the whole team could make this a pleasant experience for all involved (nameless strangers, no need to thank us, you shut off your cell phones for the entire showing, and for that I believe we may be even) and based on the assumption that no matter how horrible the movie could possibly be it wouldn’t be some of the stuff that makes me loathe trips to the video store because it’s at eye level and kid will fixate and I’m too tired for that battle (so now we use netflix and it’s a thrill & surprise for him every time and lets him focus a bit more) .   On the drive to the movie theater Alex exclaimed “Oh no! We forgot our 3D glasses” and we explained that it was ok, that we would be getting new 3D glasses at the theater.

Oddly enough, the ticket window lady told us that the theater was only half full. Which was good, because  I bring some neurotic tendencies to the table- I don’t like to go into a dark theater to find a seat and I prefer to keep the ratio of us to the people who could eventually candy ooze and popcorn us and feed us to the local gators at a much wider spread, so we can gain some distance, if necessary, for a running head start.  No, this has never happened. But having a kid with sensory differences that go hand in hand with PDD/ASD, makes us a little cautious.  I’m sure there are folks who would argue that we shouldn’t hide our child or apologize for him, and we don’t hide him, but I was single and childless long ago and as a single ticket holder on planes, trains, busses, and even the occasional theater or restaurant,  I have been frequently seated in that spare seat near the family with a bajillion kids under the age of 5, of course bajillion is an odd number in these scenarios, leaving that extra seat for yours truly.  So while I am not hiding my child, I do try to be considerate as I can pretty much guarantee that people did not pay $10+ for a ticket to the us trying to calm Alex show (or the screaming infant in an R rated movie show either…again in my childless days I know I wouldn’t have even taken a $5 matinee ticket to see that show).

Anyway, immediately upon finding our seats, J & A take off to do the necessary tour of the restroom, or else Alex will obsess the entire film.  They come back with beverages and popcorn, toward the end of the previews.  By the way: I’m so excited about Where the Wild Things Are (the preview made me weepy & gleeful it was so lovely), Cloudy With A Chance of Meatballs (one of my favorite books and it looks like great fun on the big screen), and Up (clever, funny, a wild ride…at least from the preview).

On return Alex mentioned again “but I don’t have any 3D glasses” so Jeff went to investigate. Honestly, I haven’t been so up on the technological advancements of film, so I shyly assumed nobody else has them maybe we don’t need them. I was wrong. How wrong? Wrong wrong wrong wrong wrong. Jeff returned with the news that this theater doesn’t show movies in 3-D.

Blood Curdling...(Or maybe just milk curdling...It's citrus after all)

Blood Curdling...(Or maybe just milk curdling...It's citrus after all)

Yeah.  My thoughts exactly. We’d prepped kid for the movie experience, as usual. But we did not prep him for this. Heck, I could have used a warning.

And why didn’t we know this before deciding to come to this theater? or when buying our tickets?

I took a peek when we got home- moviefone.com specifies Monsters Vs Aliens 3D on some listings, at some theaters.  But not at our theater- it just says Monsters Vs Aliens.   I’m guessing that I’m not the only one that thought it was in 3D the way that the superbowl promos were on TV- available on every color television (theater) and viewable with 3D glasses.  I guess if we knew the finer points of the technology and equipment and specifications required to project such technological awesomeness (according to the hype) for the masses then we would have known that not all theaters will show it in 3D. If we had followed the film magazines maybe we would have been more wary. If the 8 million ads we have seen did not all say in theaters real3D -without explaining that real 3D is special equipment and not available at every theater, then we would have been prepared. So really, if the 3D is being pushed so much in the ads, and there is no voice over saying “in 3D where available” or “in 3D in participating theaters” then guess what?  I’m going to assume it’s in 3D everywhere. So when Jeff searched moviefone.com by zipcode, it didn’t stand out that there were different listings for Monsters Vs Aliens 3D and just plain two-dimensional Monsters Vs Aliens.    Really, if they are going to only promote as a 3D (at least in our market) film but then slip some 2D versions in, couldn’t they at least market it as Monsters Vs Aliens in True 3D, and Monsters Vs Alients NOT in True3D.

I guess, I have experienced IMAX to know it has special requirements and to see it we have to go to a specially outfitted theater, but with the widespread release of Monsters Vs Aliens it never occured to us that “real 3D” required a different outfitting than a regular 2D cinema.

Anyway, frustration aside, Alex didn’t freak. He did request another visit to the restrooms, so I took him so we could talk.

He was so bummed that it wasn’t in 3D, I was bummed that another movie outting would have to happen to have the 3D experience. (Can you tell I don’t get out much?  these days it’s hard to go anywhere, I really had to summon all of my strength for today, so the idea of going to see anything in the near future is bleak) Or that I would be subjected to another movie viewing today so Alex can get his 3D fix (shark boy vs lava girl is a favorite lately).

He did fidget, blow bubbles, and at one point hummed Ode to Joy rather loudly as we came back from the bathroom (where we saw a cockroach, which Alex talked about loudly enough that the other folks in the bathroom were quite hesitant to even move…As was the cockroach).  But he did ok, considering the build up to this experience and the let down.  He wasn’t more fidgety or chatty than the kids sitting behind us, so I take that as a good sign.

He did remind me that we forgot the 3D glasses, after the movie, so I think he thinks we screwed up completely. And we kind of did, but now we know, and he was fairly cool about it, which to me is a huge sign as to how much progress he has made.

I am though wondering if some of the other folks in the theater thought it was in 3D as at least in the previews the animation and the projection were so crisp that things did feel 3D-ish….

Anyway, strategy for next time:  triple check the availability of 3D.  Avoid AMC Merchant’s Crossing completely (the popcorn is always insanely salty and somewhat stale, not to be a picky freak, but I like good movie theater popcorn. Ask Jeff, we once had to drive by a movie theater just for popcorn when I was pregnant.). Bring the weighted vest and quiet fidgets for Alex to put on when he starts getting a little stir crazy and so he can keep his hands busy and enjoy the rest of the show.  Bring a plastic cup with lid from home (water bottles are not our friend). and arrive 10 minutes early for the trip to the bathroom, the snacks, and finding a good seat, far from the maddening crowd, for their sanity and ours.

As far as the movie goes- it was ok. The usual fare…Not as engrossing as some, but the characters were kind of neat and there were definitely a few laughs.  It really was a quick and not too shabby ride. Even in 2D. Not as horrible and empty as some have made it out to be, and clearly it stands on it’s own in 2D, but I did keep thinking, after certain angles and movements: gee that flying/punching/bubbling/exploding thing would have been great in 3D.

Our experience here is a perfect example of setting customer expectations appropriately and how that relates to a customer’s actual experience with a product. As my expectations were not set appropriately or accurately by the advertisements/marketing of this product, I was allowed to make my own expectations without adequate guidance. The human mind is a vast and powerful thing, we use information to guide our forming of expectations about everything, when we are misled, it leaves us feeling cheated, perhaps angry even, it sours us to repeating an experience or even a related experience.  So how are you setting customer expectations? or even non-business interpersonal ones?   I’ll discuss this further in the upcoming week.

Also, if ayone wants to share any tips for taking sensory sensitive kids, kids with ASD/PDD/Asperger’s to the movies or any other sensory intensive experience, please comment, I’m sure we can all learn something!

Me.

10 Sep

Me.

Originally uploaded by CleverGirlBek

This is me.

Today, and most days, my burst of energy is around 11am for around 45 minutes. Boyo is usually in school and misses it, he tends to see me at my lowest level of energy (he says “Mama’s energy is blinking red”…Lately everything relates to RockBand it seems…) and he’ll hang out with me in a temporary fort under the blankets and we have this funny little dialog back and forth before the bald guy comes and retrieves him and I hang out, sometimes plugged into the wall so my newest ‘betes gadget can recharge, usually with an earplug in my hand and sometimes crying because I just don’t have the energy these days to get much done and I’m so frustrated and it has moved beyond accepting that I need to adjust my expectations for the day into the endless frustration that getting out of bed in the morning exhausts me so much that I almost don’t make it out the bedroom door.

But I do what I can. I have learned to bring some work to bed with me. I am the queen of containers with little compartments. And I work on working smarter and putting systems into place so I have less to worry about and more time with my little guy.

Kiddo tells me “and then you’ll rest and your energy will be back in the green and you’ll be so happy to play again”…

If only a nap would move my energy I’d be soooooo grateful.

Anyway.
While I was resting today he went to his “office” (his room is set up Montessori style, in little compartments/rooms with 3 foot high walls) and made this for me. I think this is the first thing he has drawn specifically for me. I know this is some sort of a breakthrough, but I can’t get past the tears.

And then I have to explain to him why mama cries when she’s happy…
All of this is so confusing, but he just grabs me a wet wipe and orders me to blow my nose. Which makes me cry harder.

All I know for certain is that I am loved. Really, truly, purely loved.

Update on neuro

3 Mar

Just a quick and brief update…

Looks like pretty bad ADHD (don’t worry anyone, nobody is jumping the gun and medicating the kiddo. With our family medical history we know better) combined with Sensory Integration Disorder and higher language issues, low tone, and poor fine motor skills. Of course, all of these things play off of each other and everything needs attention…

Working on strategies to work on structure and impulse control….

Doc suggested putting boy-o in the public school system where he will be better supported… I agree that he may need a change in school environment/structure in regards to learning with ADHD and not having it be such a mix of “he sat still and learned today” and “he needs to work on his listening/he doesn’t listen” (which seem to be the two brands of report that I get when I pick him up). Maybe that structure is a trial run of more days at school because it seems like the minute he settles down (in his 3 mornings a week) it’s the weekend again…. I understand that public school might be a better fit and better support and it might be more of a no-brainer if we still lived up north. But we don’t. We live in Florida where corporal punishment (physical paddling…rationing of bathroom use…physical restraint) is permitted according to state given teacher rights and those rights offer too much personal interpretation and gray area for me to be comfortable sending my kiddo into that environment without a ton and a half more research and trying out a few more things before we make that big change. I realize not every teacher paddles or believes it is a positive approach to managing behavior in the classroom, but in our county it is allowed….I have lots of what ifs these days…What if a sub comes in for the day and thinks paddling is the only way to deal with a child who can’t sit still or won’t stop talking a mile a minute and can’t stop disrupting his peers? That one person could do a whole lot of damage to my kid, and I’m not willing to take that risk especially before exhausting all other avenues.

Not deciding anything overnight. Not when it comes to my kiddo.

Especially with this. Especially because I have fairly difficult to manage ADD, and I have been through the medical wringer. I ‘m more than a little wary of doctors and other medical professionals making snap judgements based on one little trait…I’m more than a little exhausted from staying on my toes as far as my reasoning goes and being aware that some things can be helped by medicine and need medicine, but not until all other avenues have been exhausted. In our situation that means creating structure at home and in school and working on the kiddo’s other areas that need improvement….

Updates to come… For now I have a whole bunch of organizing of pretty much every part of our lives. Not easy for as our lives have been pretty much an endless series of “survival” modes since I became pregnant with my little guy long ago. Medical and family and financial and work emergencies have kept us moving, but haven’t helped with taming our environment. So that is what we are working on now, so we can have a cleaner canvas to build upon.

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