Tag Archives: OT

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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Hugs and Kisses

1 Feb

XO

Originally uploaded by CleverIndie

Update: Kiddo seems to be doing a little better…. He seems out of his shell, but operating at a more immature level than we are used to (selective hearing… pretending it’s opposite day ’round the clock…Not answering questions…somewhat hyperactive compared to baseline)… I guess time will tell… Starting a new schedule for him tomorrow that will hopefully help him. Feeling the pressure to bring in info for school but at the same time don’t want to overwhelm his teachers… That and all of a sudden he’s rejecting the idea of bringing his weighted vest(he calls it his huggyvest) to school, so I need to dig deeper on that one and I need to write out a comprehensive (but not overwhelming) sheet on it so it isn’t used inappropriately… Ideally I would like the teachers to suggest that he use it and leave it up to him… It’s not weird looking with his clothes- it actually matches his uniform and doesn’t look weirdly therapeutic… When he got it last summer he didn’t want to wear it to school because he didn’t want the other kids to feel bad that they don’t have one… Hopefully this is still the case… I’ll update the blog this week with a breakdown of his “toolkit”…

Anyway, Happy Superbowl Sunday!

I’m making my famous chili…Some ingredients are so secret that I forget them, so it’s a long process…. I don’t use a recipe. I wing it, build the flavors, tweak the ingredients… It’s an epic meditative cooking experience.. But I recruited kiddo and hubby to remember to stir it every few minutes so I can still rest… Feeling pretty crummy as I’m sweeter than I should be… Nothing is working the same way twice with my diabetes these days, so I’m learning on my feet…Dreading my visit to the endocrinologist this week as I am still mad about the dexcom (he prescribed it even though it’s contraindicated in regards to my other prescriptions, and I want those other prescriptions back!) and last time he told me “Diabetes isn’t hard to control”….Ahhh spoken like a non-d person…. We shall see..

Back to the pretty picture….

The image shows shrinky dink hearts that has/is an occupationally therapeutic project. We are making Valentine cards for school (he loves hearts…hearts and starts are his favorites, but he sees a heart and says “a heart means love” and smile this sweet little smile…)…

So, he used his muscles and hand eye coordination to punch the shrinky dink hearts out using the giant hole puncher. When his arms and hands got tired he worked on his balance and stepped on the hole punch… Thankfully, those silicone baking mats are awesome for projects such as these- a little cushioning and a little non-slip grip…

Then he wrote xo on them which involved planning ahead for spacing…

Then we baked ’em up and he sat in front of the oven giggling like a madman as the hearts curled up and popped like jumping beans before shrinking completely and flattening out….

Next step? I think we have had a request for glitter… I’ll post an update when they are fully sparkly…

Until then….

xo

Bek

Spin!

20 Sep

Ultimate Spin top

Originally uploaded by CleverGirlBek

Gyrobix

I think this is the new favorite in our home…It takes the whole spin top thing to another level…I also think boyo’s OT is going to love this when we show it to her… Works all sorts of systems and it is fun… We are all entranced by this!  Thanks Grandma Julie!  

Wii Fit.

21 May

Yes. I did it. I preordered the Wii Fit from Amazon a few weeks/months (who can remember?) ago and it arrived today.

While I do need to lose weight and get my overall health and fitness into much better order, I find it hard to stay motivated while dealing with all of the kid issues (a “normal” person would be exhausted after all of the therapy/activity stuff) and my bone, muscle, endocrine, pain, and general malaise and fatigue. I have a doctor who barely looks at me when I come in his office- it’s not just me, I’m 99% sure he does this with all of his patients. It’s like he’s a librarian of my medical stuff and can access it and then he can pull other information for suggestions- but he is very by the book. I had a horrible experience taking statin meds but he insisted I try them to lower my (then slightly elevated) cholesterol. Found out that Statins and NSAIDS have the same response with me: swelling of extremities (I’m not talking pre-period bloating, I’m talking totally deformed swollen…causing stretchmarks amount of swelling) and everything gets stiff and it feels like I am walking through molasses…Even like my jaw has cold molasses in it. And I couldn’t stay awake. I was scared to be home alone with my little guy (he wasn’t in school yet). But because statins seem to beget lower labs, damn the side effects full speed ahead I swear he probably has every patient in this city that has either numbers that are below (in the ones where they are supposed to be below) the ideal by less than 20 points and every patient who may or may not be at risk from other health issues and genetics on statins. So I have refused statins. We tried a couple, all had the same reaction and I cannot function like that. So I told him I was going to take 6 months to lower my cholesterol on my own and if that didn’t work I would try another cholesterol medication. Guess what? My overall number dropped 100 points…All of the other numbers are where they should be and I was so looking forward to that call from his nurse last month to just hear her say “ok, see you in three months”

But once again: “Dr. Xyz wants you to start on vytorin again. He said that you mentioned that the side effects were difficult to manage but he feels the benefits outweigh that.”

Benefits outweigh the side effects? My numbers are better than perfect. Another doc even said “wow, your labs are better than mine and I don’t have all of these issues”. I have been working my butt off.

For what, for just in case? Adding a med with the side effect of me not being able to process information, speak, walk, talk, and in general be an interactive human being at even a basic level? No freaking way.

Anyway. So this doc is also the king of spitting information out without considering the patient. Most of the docs down here in Florida seem to be of the “one size fits all” approach (not meaning physical size, just treatment of medical issues/disorders/diseases/etc in general) . So I have damage to my spine that is getting worse (long long long story that I will entertain you with next week if I remember)… I had a tumor that gave me osteoporosis, ulcers, and a whole slew of other things. I have muscle spasms (freakishly giant charlie horses that kick the shidoobie out of me multiple times a day). I tell the doc that I am trying to walk more, take extra steps, etc… when I can because being sedentary is not the answer (my body is old at 32. like really old. like so old that I watch tv where people are complaining about crows feet at 32 and I want to blow the TV set up, but I really don’t have the strength and energy to move it to a safer location and it is one of those light weight and small ones) and that I want to do something to feel better in this medical freak body. I feel like I’m on the right path… I’m seeing better glucose readings and clearly my cholesterol has dropped but then he drops his prerecorded message.

“You need to exercise for 45 minutes, x number of days a week”

The prescription.

I refer to this as the last prescription.

Because I have heard this many times. Because I believe that starting parameters such as this are overwhelming to Joe and Jill Average who have a couple of kids, both work full time and they are caring for an elderly parent (general scenario)… I’m disabled- my body is freaking beaten by time and arthritis and being in the wrong place at the wrong time- I do get out of bed everyday but it takes 10 minutes to get to my feet and start walking. I have days where I can only shuffle to the microwave to heat a heatpack. 45 minutes of anything pretty much doesn’t happen.

45 minutes is too much for many people- it’s a giant chunk of time in an over-scheduled world. I’m not saying that there is anything bad about 30 or 45 minutes of exercise – I am hoping to get there some day.

But until I adopted the idea of taking baby steps and using quantitative measurement of my progress (I use a step counter daily and try to increase daily) and setting reasonable goals within a reasonable amount of time- goals that I knew I would have to work hard for but that weren’t crazy like “drop 100 lbs in 1 month” stuff; until that moment that I realized that something is better than nothing and I own this, then that was the starting point for me getting healthy.

Anyway, back to the Wii Fit. I really like that it takes different measurements of different skills and charts progress. It gives you the option of setting goals. It tracks your time. I just got lost in it (while I was setting it up before kid gets home so he can try it- I think it will be helpful on an OT/PT level with improving his and my balance) for 18 minutes. For 18 minutes I worked on my posture and balance and didn’t notice that the time had gone by. I have been sick for the past 2 weeks (on top of the regular physical stuff) so 18 minutes, in my book, is a huge step in the right direction from 0 minutes for the past couple of weeks (in total) ….

The activities are fun and look simple enough…Maybe for Average Joe they are… Not so much for me… But I could see little blips of improvement and especially with the balance games I found it had a nice blend of body vs. brain that most other games don’t offer… The balance controls, the way the wii fit platform interprets your movements is pretty cool and, at least for me, seamless. It’s fine control in some activities. I was a bit skeptical that the platform would wind up being like DDR -but the precision is crazy and unlike our DDR mat on the carpeting you don’t need to stomp- and actually I’m finding that there is a bit of a learning curve with the Wii Fit platform because I’m not used to not having to do anything with my hands and a controller to make the characters on the screen react. And my brain is saying “don’t stomp! you don’t need to stomp!”…

Anyway, the message is: something is better than nothing, set goals- set them in reasonable bits- attainable but will require work, and not so long term that it’s hard to see the reward…. Also if your doc really isn’t listening (I’m not talking about disagreeing, I mean doesn’t make eye contact…Suggests menopause treatments and you are a dude- that sort of thing…) Then get another one. Listen to your body. Figure out what motivates you or what is accessible to you. I have ADD- even if my body could, my brain can’t do anything for more than a few minutes at a time, so variety is the spice of life for me… Learn the tricks that move you and work with them.

And stay tuned for more updates on my Wii Fit experience…

Impressions right now:

easy to use and for all ages (although stepping on the platform to get his initial info is proving challenging to my little guy…placing him on it seems to work but just annoys him :-)

-all fitness levels, but may require modification – leaves this up to user…

-running game is pretty neat- you can really go at your own pace and if you go to fast the mii trips and falls over and it reminds you to not exceed your personal limits… Also tells you that a steady pace is best (so not for windsprints at this level, not that I am in any shape to do them)….

-Soccer balance game is neat- you head the soccer ball and try to avoid flying shoes and panda bear heads (that look like soccer balls from far away)…Really like the brain/body/reaction concept… Warning: people under 20 and anyone who likes the type of humor along the lines of The Stooges will probably enjoy heading flying cleats for a few rounds (until they realize they are losing points each time)…

-some exercises may not be possible for some folks due to health issues/injury and people really need to listen to their bodies… The tree pose wants the foot on the inner thigh- I have a busted hip so that is not going to happen any time soon… I wish they did have modifications especially for those with injuries or other health issues/precautions or just plain beginners….

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