boring? really? or is that really boring?

I don’t think I need a crystal ball to predict trouble in Mac’s future.

I know there has always been potential given the ‘genetic’ predisposition (paternal of course 😉 ).

And I know that to enable a 7yo the power of communication when he lives a life exposed to way too much information & adult conversations and concepts can always be fraught with danger.

But, still… gotta laugh (a bit).  This child is a nightmare – a wolf in sheep’s clothing if you will.

He had a fill-in/casual teacher yesterday and he was working with “M” his aide.

“M” asked him later in the day if he wanted to “tell or ask her something?”  YES he answered.

He started typing…

S h e     r e a l l y     i s . . .

And then he got distracted, or perhaps exercised some judgement (I can live in hope).

Anyway, when he got home I asked if he wanted to keep typing his message/comment/questions for “M”.  He did.

Yep, you guessed it…  B-O-R-I-N-G

Now to be fair to the teacher, and on further enquiry with Mac, I am fairly confident she never stood a chance – not when she is competing with his “beloved Mrs R” (the sole recipient of a Valentine’s card from Mac this year).

I am not sure whether his failure to ‘complete’ at school was an awareness that this probably isn’t something you want your communication device ‘blurting out’.  It has reminded me how important it is for AAC devices to have a “whisper” or “secret message option” – I’ll add it to the wish list for our perfect device – would love to hear if you know of any that do this.

Slightly unrelated but prompted by this exchange I am intrigued by his inclusion of “really” in so many of his sentences.

“She really is boring”

“I really just want to drive quickly at home” (when discussing powerchair options)

“I really like going out with friends and going to the beech” [sic] (journal writing)

I like that he seems to have a ‘style’ with his commenting & communication – albeit slightly emotive.

He does, however remain a ‘word prediction fool’ offering up that “he emphatically disagreed” when he and I were ‘talking’ on Friday evening –
“oh phrase prediction, how I love thee… sometimes”

 

BFFs

I know we’ve mentioned Mac’s friend ‘Miss B’ a number of times before and so here’s a pic of the pair of them doing what they do best… just hanging together and being very, very cool.

I am unaware if there was prior collusion between the pair to ensure they both ended up at the swimming carnival in their aviator glasses.  Since B only got hers the day before for her birthday and Mac is reliant on his ‘oft’ absent minded mother to remember to pack that sort of thing I think it was more good luck than ‘good collusion’.

In a nice turn of events they have both ended up in “blue house” for their sporting events – Go the Blues…

Mac took his bath/shower chair which looks more like a banana lounge than a piece of disability equipment to the event – it was a good option to allow him to ‘kick back and relax’ between free swims (and it’s blue).

 

swimming carnival

This year was Mac’s first swimming carnival now he is in Second Class (Year 2).  I was greeted at assembly on the first day back by our newly appointed Sports Teacher asking can she catch up with me to work out how Mac could be included in the carnival.

Between us, our ‘cyber friends’ and ‘fleshy friends’ we all had some good ideas and plans for future carnivals but this year we decided that since there are still plenty of kids who don’t swim Mac could just go in to the pool for the free swim.  The Sports Teacher offered to take him in but I figured his Dad could swing a day off work for that job.  Mac enjoyed being in the water for his three swims and thankfully our heat wave had passed so it was a much more pleasant day with not too many sunburnt bodies.

As a competitive swimmer in my younger days and a swimming teacher since I was about 13yo I know I have high expectations of how well children should be able to swim.

It makes me laugh (and… yes, does my head in a little) that I can’t even get Mac to hold his breath under water.  I spend an awful lot of time explaining to him that his evolutionary loss of gills make his desire to continue breathing underwater a poor choice.

However, I do have to admit to being a little surprised at how many children are not very strong swimmers.  There is still the group who are great swimmers, strong, fast and impressive.  Then their is the next group who seemed to have ‘nice looking strokes’ but I would consider a large proportion wouldn’t have the stamina to ‘save themselves’ if they got into trouble.

Remarkably, there is also another group… those who think they can swim, who have parents who must also think they can swim (signing the permission slip indicating such) only to find when they dive in, actually… they can’t.   Thankfully the schools are ready for these few ‘sinkings’ so there is always someone on hand for each lane.

All in all it was a fun (and funny) day.

But how much fun would be to include some powered rides like this…  I am working on using this as motivation for Mac to learn how to hold his breath, when needed, in the water.

chocoholic

It was an interaction full of sincerity.  Mac’s newest aide “M” was on her first full day working with him.  She had been learning about his equipment, how he uses his foot switches and trying to find out more about him, from him.

M was explaining to Mac how he might have to “bear with her while she learns all about the equipment and promised she would work hard to master it quickly”.

“M” then asked him  “what she might be able to do that would help him the most?”

Mac started his auditory scan.

C – H – O – C … then up to word prediction:

C H O C O L  A T E

Yep, all “M’s” sincerity wasted – this kid is in it for himself, cheeky little bee-bop.

Although, I have to admit to been secretly impressed by his answer – to me it says so many things…

I am can spell…
I am a smart alec…
I have a sense of humour…
I am cheeky…
and, well,
I actually do like chocolate.

 

 

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

look how far we’ve come

I was in class helping set up Mac’s equipment for his aide when class started.

The topic the students were about to begin was plurals.  The conversation went something like this…

MRS R: OK, who can remember what a plural is

MAC: “glar” (with a kick of the legs and a look of purpose)

STUDENT “O”: Mac’s trying to say something

MRS R: Mac, do you know what a plural is.

Since Mac didn’t have his foot switches unpacked at that moment he provided his old faithful “lip smack” YES response to assure her he did.

MRS R: OK, Mac knows, does anyone else

A few hands went up and offerings of definitions of all manner of items in grammar the closest being ‘two things the same’ (close but not quite).

No one really gave the desired answer.  Mrs R was checking with Mac whether he thought any of those answers were right… he didn’t.

So she offered him some more choices.

MRS R: Is it the name of a specific person, thing, or place?

MAC: (without any delay) NO

MRS R: Is it when two words are joined to form a new word?

MAC: (again, a speedy response) NO

MRS R: What about something that means more than one  eg a person, thing or instance?

Mac stopped his wriggling and turned his head to one side but didn’t answer straight away.

STUDENT “O”: I think he’s thinking

MRS R: Have you got an answer for me Mac, does it mean “more than one?”

MAC: (after a second or so)… “YES”

What I found most interesting in this clasroom exchange is the comments of Student “O”.

Firstly he accepted Mac’s ‘noise’ in the first instance was not just a noise but in fact was Mac trying to “say something”.

Secondly, when Mac didn’t give an instant response he commented that Mac must be thinking.

“I think he’s thinking”

… it made me realise just how far we’ve come since May last year when I blogged about our “Weekend at Bernie’s moment”… we are a long way from “he looks dead”.  😉

 

best ever headphones

For an auditory scanner, comfy headphones/earbuds are a necessity.  So, after a year or so of searching I have finally  found some headphones for Mac that we LOVE.

Headphones or earbuds have always been a bit of a problem for Mac.  Earbuds tended to fall out, headphones never fit properly, the hook on variety hurt his ears and the headband variety often ended up covering his eyes and ears at the same time.

Airdrives earphones sit outside the ear.  They are discreet, they allow you to hear everything else going on around you and they don’t pose a risk to your ear if the sound is turned up too high – something Mac can’t do anything about if the volume is accidently turned up.

CLICK THE LOGO TO SEE HOW THEY WORK…

Here’s what ours look like…
CLICK IMAGE BELOW TO VISIT AIRDRIVES.COM

Now for the slightly disappointing news.

I haven’t been able to find them in Australia.  I purchased ours from Amazon in the USA and had  a friend to send them to me for Mac in time for Christmas.   A bit of fiddling around but SOOO worth it.

We have added an extension lead to Mac’s airdrives so he can be a fair way away from his device.  It is just a Smiggle headphone hub we had ‘kicking around’ the house – but works a treat.  The Smiggle hub has two audio outlets so he could have his communication partner listening in to his auditory cues with their own headphones to check they are all working if needed.

CLICK IMAGE TO VISIT SMIGGLE

Now, I just need to have some sort of transmitter to make them wireless to his communication devices…  I know, I know… I am never satisfied.

a big week one…

At the end of his first week Mac managed a two hour catnap ‘tiger’ nap on Friday afternoon while sitting on the lounge at home.

Week One is where classes are assigned and in Mac’s case new Learning Support Officers (aides).  For us it was also a week of 40 deg C days with high humidity – so very hot, oppressive and extremely energy sapping.

So how is 2011 looking…

Mrs R was retained as Mac’s teacher. We are thrilled the school gave us the opportunity to have a year of consolidation for Mac by having a second year with the same teacher.  With so much technology and modification needed for Mac to access the curriculum the chance for a teacher to start the year already knowing him and most of the technology is invaluable.

Mac has ended up in an “across stage” 2-3 composite class. Mac is in Year 2 so for him this has many advantages.  I know some of the Year 3 parents are concerned about how a 2/3 class will work for their children but I hope their concerns are unfounded and all the kids in the class have a wonderful year.  I think when you have a child with a disability you probably understand the concept of ‘differentiated instruction’ more easily.  Many parents probably have never had to consider that this also happens for their own children – it just isn’t as obvious because the don’t sit down and do a formal IEP (individual education plan).  And, while I am sure plenty of classes and teachers the world over do ‘teach to the middle’ and don’t differentiate their instruction to students…  I am confident Mrs R isn’t one of those.

A need for new aide(s) to be trained up ASAP. To lose R as his aide is a ‘glitch’ but but we have a new team of aide support starting this week.  Shawn and I were advised by the school the day before Mac returned they would be working on a replacement.  Our advice was that while we don’t mind who they put in the role, we did want a commitment to training as a high priority so I don’t have to be “on call” all year.

Mac will have three (3) aides.
The decision has been made for three ladies to share the role.  One will take Monday, another Tues/Wed and the third Thurs/Fri.  The school has provided an hour every afternoon for the three aides, the teacher and myself to be off class for training and planning for the next fortnight.

So far I am enthusiastic about the team.  Mrs R as we know is a great teacher and believes in Mac 100%.  It is a great position for Mac to be in where, as a seven year old with significant disabilities, he is presumed competent by his teacher and any mishaps or misunderstandings the adults blame on their own inadequacies.

Talk about a ‘valued role’ and a respected individual.

Here’s to a great year… hope you enjoy the ride.

the curious case of the missing ‘R’

Mac’s wonderful aide of 15 months ‘R’ wasn’t able to return to the role this year.  Sadly reduced hours & lack of job security for her just couldn’t meet her needs to support her own family.  That’s the downside for ‘Learning Support Officers’ – jobs they love, jobs they are great at, but jobs that just aren’t that secure.

Mac will miss ‘R’ incredibly  as she will him.  But, he has told us he will “work hard for anyone”.  When Shawn asked him if ‘R’ was in his class after Day 2 he actually gave a sad face – not something that happens very often.  Physically that kind of facial expression is difficult for Mac, so it was impressive to see him manage it when he actually felt the emotion Shawn’s question evoked.  That being said, Mac is nothing if not resilient – so I think he will be OK.

The upside is that R will likely stay involved in Mac’s life ‘outside of school’.  She has made that very important transition from paid support to friend.  This is an important shift  – natural supports are far more valuable than any paid support… ever.

A goal is for Mac is to see his life filled with people who “CARE to CARE” as opposed to those “PAID to CARE”.

Thank you ‘R’ for sharing the most amazing year and a bit with us – what a blast….  and absolutely, we’ll see you ’round.

 

words matter

a word from Mac’s dad…

CLICK THE IMAGE TO OPEN FILE