Tag Archives: physical therapy

Smashes Clay & Alex Bowls

10 Oct

I recently had the adventure of taking a parent & child class in hand building clay at Cape Coral Art Studio. Every Saturday morning for 8 weeks, Alex and I hopped in the car and dragged ourselves to the studio to play in the mud.

Our teacher, Teri Aldred, was fantastic. She is a talented clay and mosaic artist and also works as a substitute teacher in our local school system and she has experience teaching other parent-child pairs with Autism.

Class was a challenge, but definitely gave me insight into some of the quirks and challenges Alex has in a classroom situation, which I’m not privy to at home, and those insights were definitely priceless when writing his IEP for this school year.

We made a couple of things. Our first project was a bowl made by slump forming. Alex put “m” all over the outside of his, as he decided the bowl was going to be for something tasty that would make a person exclaim “mmmm”. I put his name and he stamped mine on my bowl, and we used netting from a bag of oranges to make sort of a fishing net/fish net stocking texture. I learned that Alex cannot sit and listen to directions and understand them in a lecture and then hands-on sort of a setting. He was hugely distracted by the stereo in the classroom and all of the features and buttons.

So the next week we got to class a few minutes early. We took a photo of the stereo system on my iPod touch (we aren’t cell phone people…no need for them.) so he could zoom in and look at all of the features after class. I then took notes of each step Miss Teri spoke of. Due to low muscle tone, Alex has some trouble manipulating a rolled slab of clay into anything more than a pile, and with my weakened (RA fun! I’m working on regaining my hand strength and dexterity now that the joint swelling has subsided some) hands I wasn’t exactly adept, but we made do. So I wound up rolling him a footed cylinder and he decorated it. I then went to work carving my footed pot.

Alex needed to move more so he puttered around the classroom, playing with a sponge and water. I decided the goal for next week would be to get him to not play with the sponge during class. He really enjoyed the tactile experience of the sponge and water, particularly after handling red clay and having dried out and dusty feeling clay hands. I promised him his own soft sponge at home, if he only used it when he was supposed to in class (and not to dribble over our work when we were waiting for coats of glaze to dry)…

Our bowls were bone dry, so Alex gently sanded his with a little square of scotchbrite pad, and I used my super pointy stick thingy (the technical term) to etch and carve sharper details into the sides of my bowl.

Then the inevitable happened.

It slipped from my hands and broke into a pile of dusty chunks. Our teacher was so upset. I didn’t even flinch. I’ve been dropping things my whole life. One of the reasons I chose to work primarily with vintage plastics/phenolics way back when is because of my unpredictable hands.

She told me I could glaze the pieces anyway, and use them for a mosaic. So all was not lost.

All in all, I learned so much about Alex and his learning style. I thought I knew that stuff pretty well, but add in actual real life scenarios with other kids and teachers and a new set of rules in a new location with all new sensory stimuli, and it’s the same beast, but it’s in high definition.

Alex and I had some great conversations going back and forth to class, particularly about how he wasn’t focused and wasn’t fully engaged and how he was not really enjoying the class but he was enjoying spending time with me. We realized that the reason class felt more stressful than we anticipated, is because we were basically working as parallel entities. Two projects, two people. Side by side. Two Aspies and parallel play. Not exactly a rarity, is it? To keep him engaged, and to enjoy more of the cooperative aspect of the experience, we decided to work on one project but make all of the decisions together. If I say that the surviving bowl is his bowl and that he made it, he corrects me “It’s our bowl, Mama. We share.” So sweet.

I was hoping to pick up another class with him, but he doesn’t want to do clay anymore.

The end result is that we have a gorgeous bowl on our kitchen/work table and two footed pots and a better understanding of each other. And we have shards. Lots of shards. When we have a yard and garden or our first real (non-condo/apartment) house I’m going to use them there. Someday…. I hope.

xo

B

Alex’s Journey to Camp Cheerful UPDATE July 9

11 Jun
Alex’s Journey to Camp Cheerful UPDATE…
I want to thank all of the wonderfully generous friends who supported us in our fundraising to send Alex to this special camp.  Unfortunately, life had other plans for the time being.  Due to fairly dramatic health issues (more on that later), I am unable to accompany Alex to Ohio, so we are postponing his experience at Camp Cheerful until next year. I did return all funds raised, to their respective contributors, due to the change in plans.  Alex is disappointed, but he is very vocal about wanting me to get better.  We are working at getting new therapists on board for him, locally and hopefully camp will be in reach next summer and I will be 110% again!  Thanks again to everyone who continually roots for Alex.  Alex is well aware of the love everyone has shown us along our long journey.
xo
B

Alex is my amazingly brilliant, funny, sweet kid who has Asperger Syndrome. Asperger’s is a neurological disorder, it is a developmental disability.

Alex is almost 7 years old. There is a summer camp (Camp Cheerful) in Ohio specially
designed for kids with Asperger’s. It includes things like Occupational
Therapy, which would be a huge help to Alex. The camp would help give
Alex the tools he needs to face his daily challenges, which are more
than most adults could tackle every day.

Here’s a wonderful description of Asperger’s Syndrome that recently aired on the PBS show “Arthur” (the meat of it is only until around 2:45… so if you aren’t into Arthur please don’t feel you need to watch all 7+ minutes!)

For a more straight facts, less dramatized (less animated) description please visit AANE’s AS facts. For our personal experiences please read the Asperger’s entries on my blog

Love and peace,
Bek, Jeff, and Alex

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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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Just keep swimming. Just keep swimming.

13 Jun



Pedal

Originally uploaded by CleverIndie

Physical Therapy (for me) ended yesterday.

The loss of my only undivided me-time has brought up many things.

Lots of tears.

This was my first break in almost 6 years. I had 18 hours where I wasn’t in charge, out of almost 50’000 on duty and on high alert.

I’m exhausted. I’m angry.

The true colors of some people are really shining through, and not in a good way. Having a not-readily-visible disability and a child with different needs brings out the narcissism in other people. It’s partly the myth of the supercrip. It’s partly their choice to live in denial. It’s a whole lot of their narcissism. If they don’t accept a fact then it doesn’t exist. It’s like “La la la let’s pretend everything is ok and then it is! And if it isn’t lets kick the person when they fall to the ground and then call them negative when they tell us to stop or start to cry! She’s dead from our kicking? She is cured of her disability! Isn’t positive thinking grand!”

Ok. A bit of sarcasm (just a dash, right). But I don’t feel like boring you with back story. And positive thinking is wonderful. It’s the kicking and the holier than thou-isms that I have the problem with. It’s also the living in denial part- ever wonder why disabled folks are often depicted with a chip on their shoulder? The loss of certain abilities eventually (over a variable passage of time) becomes accepted fact, but the bitter pill to swallow is the loss of family and friends and the feeling of being tricked, cheated, resented, and lied to by supposed loved ones who invent their own truth rather than bothering to listen to the one person who has experienced it. Try trusting anyone after people who were once at the very core of your world and your family decide what you can and cannot do, not based on any reality except their own needs, and if you try to explain you get labeled as selfish or lazy or negative. And if you do what you can to help them with their needs it is never enough. Any which way, you wind up being judged rather than accepted.
It’s a losing battle. I feel stupid for even trying to fight it. I have to learn to conserve my energy and to say goodbye to those who cannot see past their own noses.

I’m in that really weepy (ok, sobbing) part of building up to cutting off my hair (not really going to hack it off, yet), blasting “The Warrior”, and moving stompingly forward.

But I’m tired and my body really really hurts.

No support for this broken body.

Fact. Not whining. Not negativity. Just fact.

I’m putting this out into the universe because my voice is hoarse.

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