Category Archives: the big picture

chucking a real sickie…

 

Mac ‘chucked a sickie’ last week, thing is he really was sick.

In fact, he was probably sicker the day before and I would normally have given him the day off… only we had appointments with both Vision Support and Speech.

I never normally do therapy appointments at school – I don’t believe that is the place for them.  They create an imbalance in the adult to child ratio and they are, let’s face it, a little bit weird.  To me therapy (speech/OT/other)  is an extra-curricular activity, like learning to swim, soccer training, homework clubs… I try to leave them for school holidays or after school hours.

But this day we had a the opportunity for our speech therapist to be joined by her manager so I figured it was worth breaking with tradition just this once.

Besides, we are really keen to explore social communication opportunities at school so it was the right time to ‘bring some people in’.

Unfortunately, no-one showed.  They did call and let us know during the day but I wish I had just kept Mac home.

He stayed home the next day and ‘laid low’ over the weekend seeming fine to return to school on Monday.  And he did, not acting sick – a little tired maybe, but that’s all.

But I was chatting to him today (one week on) just to see if there was any problem at school – as I don’t think he has been working all that well.

It went something like this:

ME:   Are things OK at school?
MAC:  YES

ME:  Do you think you are working well enough for your teacher, Mr B?
MAC:   No

ME:   Oh, have you got a problem – you know… a little bit of a problem, a matter, or something up?
MAC:   YES

ME: Are you still a little bit sick?
MAC: YES

ME: You’re not completely better then?
MAC: NO

ME: Is that making it hard to work at school?
MAC: YES

ME: Do you think you could type where or how you feel sick for me (on the Dynavox)?
MAC: YES

And so we switched input methods to auditory scanning.

MAC: e-v-e-r-y-t-h-i-n-g  a-c-h-e-s

Oops… poor little guy has probably been battling along with the flu or at least ‘flu-ish’ illness all week.

ME: Do you think you are on the mend, are you feeling any better than last week?
MAC: Yes

ME: Are you sick enough to go to the Doctor?
MAC: No

ME: Are you well enough to go to school tomorrow?  (bearing in mind he has had a really good, vibrant, engaged day today)
MAC: Yes

So I wondered more about the everything aches comment and decided to see if he could pinpoint where he aches.  I know, I know… he said “everything”, but, I’m a Mum – it’s my job to press for more info 😉

ME: Does your face hurt (thinking sinus pain)
MAC: yes

ME: Do your teeth hurt
MAC: No

ME: Does your head hurt
MAC: Yes

ME: Do your ears hurt
MAC: No

ME: Does your chest or lungs hurt
MAC: Yes

ME: Does your tummy hurt
MAC: No

ME: Does your butt hurt
MAC: No (why do boys always smirk at the word ‘butt’)

ME: Do your toes hurt
MAC: Yes

ME: Do your ankles hurt
MAC: Yes

ME: Do your knees hurt
MAC: No

ME: Do your bones hurt
MAC: Yes

ME: Does your bone marrow hurt (we discussed the smooshy stuff inside your bones LOL)
MAC: Yes

I don’t know about you, but to me that is a pretty good description of how you feel when you are a little bit fluey.  But clearly – Mother of the Year, I am not.

He has been much better today & yesterday so I think he is definitely on the mend – I hope so for his sake.  It will be nice for everyone to have him a little more engaged in the last couple of weeks of term.

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Filed under the big picture

fridge magnet friday…

Thanks to Marlena Katene for reminding me of this quote. CLICK THE IMAGE to go to her recent article on RampUp: Facilitated Communication; from the inside

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Filed under Accessing the Curriculum, fridge magnet friday, Inclusion... straight up!, the big picture

not acceptable

spread the word
to end the word

from the website…

“Not Acceptable” is a powerful and compelling 30 second television PSA which gives voice to a variety of diverse communities each of whom expresses that it is not acceptable to call them by what were once common words, but are now recognized as offensive slurs. It culminates in actress and self-advocate Lauren Potter from “Glee” stating that it is not acceptable to use the word ‘retard’ and she and “Glee” co-star Jane Lynch make a call to action to stop using the word and to promote the acceptance and inclusion of people with intellectual and developmental disabilities and to make their pledge online at http://r-word.org.

The PSA was launched by the Spread the Word to End the Word campaign, an on-going initiative from Special Olympics and Best Buddies to eradicate the derogatory use of the word “retard(ed)” from everyday use and promote the inclusion and acceptance of people with intellectual and developmental disabilities.

“Not Acceptable” was executive produced by Jim Serpico and Tom Sellitti of New York based Apostle, and shot, produced and edited by Spot On Productions from City Island, NY.

The PSA is supported by several national advocacy organization including the Anti-Defamation League, Special Olympics, Best Buddies, GLAAD, The Hispanic Federation, National Puerto Rican Coalition, The Asian-American Foundation, AbilityPath.org and the NAACP.

How attached are you to keeping this word in your vernacular?

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iLove

At the Independent Living equipment expo Mac and I attended we were very keen to catch up with the latest developments from the guys at Dynamic Controls from NZ.

I have been following their stuff for a while… Liz (Poppy’s mum) brought it to our attention back in 2009.

Mac and I had registered for a mini-seminar with them and, as they were just near the entrance of the expo, had the chance to catch up with them prior to the seminar.

WOW…  I am so impressed and excited by their ‘soon to be released’ iPortal.

They currently have an interface with the iPhone/iPad for your powerchair to assist with real-time management of your chair

BUT 

with the iPortal upgrade

you can use your drive method (be it joystick, switch array etc) to control you iPhone, iPad. 

Watching it in action they had the phone in Voice Over mode and were simply using the joystick on the powerchair to move left and right (scan) through the apps then had a select movement (not sure if it was forwards or backwards) to select and open the app.

Mark (from Dynamic Controls) was quite interested to hear Mac is using his two foot switches for Morse Code as they have also added in Morse Code entry as an alternative to linear scanning through the iPhone’s QWERTY keyboard.  In their demo it was a left tap of the joystick for ‘dot’ and a right for ‘dash’ and it spoke each letter aloud as they typed them.

Of course, Mac managed to get himself an honourable mention in the seminar as a “morse coder” and potential user.  I think the guys were actually pretty chuffed their ‘gut feeling’ and decision to incorporate Morse as an access option was justified.

Check out the video… the really interesting stuff from an iDevice access perspective kicks in around the 1:30 min mark.

So now, I just need to convince them of the need for a bluetooth interface to ‘emulate’ a powerchair so Mac can access his iDevices with a switch array and any other user can do so not only from their powerchair but from any location (lounge/bed/car) they choose.

I admit to having a bit of a soft spot for New Zealand neighbours… they do tend to impress me constantly with their innovation and ability to think outside the square.

I am particularly in love with another NZ invention the YikeBike (and would love to see a wheelchair version… that would be sweet).

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Filed under Access all Areas, Technology - things that help, the big picture

thankful

CLICK IMAGE TO WATCH VIDEO

I showed this video to Mac today and asked him for one ‘describing word’ to tell me how it made him feel…

“thankful”

was his response – not quite understanding I pressed for more information…

“thankful to know you will help me”

awwww shucks, with slight watery sensation in my eyes can I just say “my kid is awesome”.

In this moment I can honestly say if he never types, taps or says “I love you” I don’t think I could care less.

To know he wants & needs my help – and is confident I will be there for him – means more than any old ‘love you Mum’ he might offer up at some stage in the next 50+ years.

That’s not to say I plan to be a “needy Mum” where I end up in that ‘icky’ place where I am needing him to need me.

I have full intentions of ensuring there are plenty of people around to ‘help him’ – particularly if he plans on doing a PhD via Morse Code à la Dr. Kristin Rytter… thanks Kristin for your inspiration (I think ;-))

 

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Filed under Accessing the Curriculum, Inclusion... straight up!, the big picture

risky business

It is very much a matter of trust and it seems Mac is trying to work out just how far he should go with his trust for his new teacher’s aides.

He has been working really well with his Mon/Tue Aide… the divine “Ms M” – they do seem to have a great rapport and likely a very good ‘learning team’ in the making.

He does fill her in on some of his secrets but he must have been feeling a little wary about the whole situation.

So he asked her on Monday if …

“you going to coffee shop too” [sic]

Ms M wasn’t sure what this meant or where it was coming from.

Yes, she likes coffee shops…
Sure, she would love to go for coffee…

It wasn’t until we were chatting about how R had come for afternoon tea and how we see her often enough at our/her coffee shop (where she works full time now) but how Mac wasn’t truly believing she would still be in his life and had been ‘smarting a little from his loss’.

Ah-ha… yes… it all became clear.

Mac was checking to see if “Ms M” was going to ‘run off and join the coffee shop too’, checking to see if he should invest too much trust in her, checking to see if he might get ‘hurt’ again.

It actually makes me a little sad to think about the emotions he must be going through to feel the need to check this out and I wish I could protect him from that kind of hurt.

But then it makes me feel glad that even as a seven year old he is mature enough to actually ask the ‘tough question’ to help him protect himself if necessary.

I just hope I can help him find the balance in friendship, trust, resilience and potential loss around that ‘paid to care / personal assistant’ role over which he (we) will essentially have no control for his entire school career.

I hope the school and their ‘rostering choices’ don’t stop Mac from allowing himself to fully engage with his learning support team, if he wants to, out of a fear of being hurt.

It is always a risky business when you give of yourself – particularly coming from his position of relative vulnerability.

I guess we need to continue to check in with him, check how he is going and make sure he is feeling OK with things going on around him.

He did say he was ‘a bit worried’ Ms M might decide to leave when I talked to him about it later that day. Tonight I was able to let him know I spoke to the owner of the coffee shop and he has advised that ‘under no circumstances is he going to offer ‘Ms M’ a job’.    Phew!

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Would you, could you, lend a hand?

I am not one to ask for help very often – learning how has been on my to-do list for sometime.

But, this is one thing I don’t want to ‘hog’ – this is something I am sure some of you might want to share in, help be part of the solution, part of the excitement, part of the fun.

Long time readers know of my plans, desires, dreams for a SMART wheelchair (robotic) that is affordable, light weight and, well, smart.

You can read about it here in my “I have a dream…” post.

They will also remember that the brilliant mind of Daniele Benedettelli is on the job, over in Italy.

Danny is starting to ‘ramp’ things up a little and so has put the call out for some donations to kick start the project.

The initial equipment purchase is USD$400 and Paypal donation option is available on the project site.

CLICK LOGO TO VISIT THE PROJECT SITE

If anyone can spare a penny, a pound, a dime or a dollar it would be fantastic to get this project “rolling” (I could have said “off the ground” but  since no one is offering me a ‘hovercraft wheelchair’… rolling it is).

If anyone has any contacts or ideas for getting some ‘bigger’ sponsorship behind this project then please, feel free to contact Danny via his site or myself directly.

 

 

 

 

While we know Mac would benefit from this type of chair it is pretty obvious he isn’t the only one.  In fact, a good friend who is a wonderful teacher in our local area said she would love something like this. She doesn’t have a physical disability but she is blind, and there are times she would like to be able to get from A to B on her own, while having a conversation (or daydream) and not having to put all her attention into concentrating on safe passage with her cane.

Thanks for listening

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Filed under Access all Areas, The 'mod' squad, the big picture