Now, he can talk, count and is even learning to spell.  Not cured,  we’re told, but improving in leaps and bounds.

What is Lyme Disease?

Public Health Agency of Canada
Lyme disease is an illness caused by the bacterium, Borrelia burgdorferi, which can be spread through the bite of certain types of ticks. Lyme disease in humans can have serious symptoms but can be effectively treated. Lyme disease has been reported in parts of Europe, Asia, and throughout much of North America.

When a person is first bitten by an infected tick, the symptoms include fatigue, chills, headache, muscle and joint pain and swollen lymph nodes.  You know, the types of symptoms that one might misdiagnose as the flu.  If left untreated, it can lead to nervous system disorders, arthritis, skin rashes, heart palpitations and extreme fatigue.  If further untreated, the 3rd stage of Lyme Disease causes neurological problems.

Which, I suppose, is where the diagnosis of Autism comes in.

My quetion to you though is: could a parent or a doctor miss all those Stage 1 and Stage 2 symptoms and unwittingly let Lyme Disease advance as far as Autism? 

The video made me cry.  At first, it is the sad story of a little boy who is gradually slipping away from those who love him.  And then it changes to a story of hope and happiness.  I am, of course, thrilled that this family has found the thorn in their side and has duely kicked it to the curb.  Envious?  Oh yes.  I so wish that we could see a giant leap forward for our Jake.

But Jake never had words.  He never suddenly started retreating from the world.  In fact, Jake has always been a big part of our world – not just because we love him, but because he makes it so.  But I’ve often thought that if there’s no sudden loss, there’s also no sudden gain.  What I mean by that is that Jake was born this way.  Brain damage?  Lack of oxygen at birth?  We may never know.  Whereas, these children who started off seeming like everyone else and then suddenly lost it… well, there must be a reason.  Vaccinations?  Lyme Disease?  Celiac Disease?  And that gives parents a hope for treatment or sometimes, a cure. 

But I don’t think that’s us.

But now Jake and Abby are back at school (today is their second day) and I sat down prepared for a lengthly search and a difficult fix…

Facilitated Communication and Autism

One Google search was all it needed, resulting in my finding the answer on the first website I visited.  The solution was one tiny line of code uploaded to my admin folder and voila, I’m back.  It was so simple that I’m frustrated with myself for not fixing it sooner.

Jake on holiday in Cobourg, ON

So as I said, today is their second day back at school and they both seem to be enjoying being back.  Jake has gone in with his brand new iPad (yup, we got him an iPad!!) all set up with Proloquo2go, which is the app that the school suggested.  I was a little sceptical about it at first, as I had initially found TapToTalk and was impressed with it enough to consider paying $10 to upgrade to the full, customizable version.  And when Proloquo2go, at a whopping $189, was suggested as the app that would be best for Jake, I just thought that TapToTalk would be just as good.

Proloquo2go Introduction on YouTube

Although both apps have their uses, I can now see that the school was right and that Proloquo2go is going to evolve with Jake and be the app that he uses while he continues to be non-verbal, which might possibly be for the rest of his life.  It comes pre-loaded with symbols for everything under the sun (and including the sun!) but you can also set it up to work with photographs for those needing more basic assistance, like our Jake.

I imagine that Jake might then one day start to under symbols and then might eventually move on to Proloquo2go’s built-in keyboard.

The app is so advanced that it will then speak, out loud, whatever you type.

The iPad’s camera means that I can add a new choice/button for Jake without syncing it with my computer or even taking the pictures that I require from the internet. 

For example, Jake’s new favorite food is pretzels and I want him to have that as a choice of food on his iPad.  So I open Proloquo2go, go into edit mode and touch ‘add’.  Give it a name: pretzels, and use the iPad’s camera to take a picture of the bowl of pretzels. Hit ‘done’.

Now Jake can touch the picture of the bowl of pretzels and hear a voice say “pretzels”.  How cool is that?!

At the moment, Jake likes to tap the iPad’s screen with an open hand, so we’re not getting exact choices from him yet, but I hope that he starts to see that he can make himself heard in this way and that it could open up a whole new world for him.  He’s a smart boy; there’s no reason to think he won’t master this.

And he loves the iPad’s camera.  He can see himself on a pretty big screen and smiles his gentle “Jake” smile.  It lights the whole room!

Anyway, so I’ve written about our Dr Useless many times before.  I call him that because, well, you can guess why, right? 

Ten Things Every Child with Autism Wishes You Knew

A few month’s back, I called their office and made an appointment for a check-up for Jake and that appointment came up just a week or so ago.  The receptionist at Dr Useless’ office is very understanding of our situation and will normally accomodate me when I request the first appointment of the day so that I don’t have to wait too long with Jake, who is not a good wait-er.  Obviously, for things like check-ups, I’m happy to wait longer for the appointment as long as we don’t have to wait too long on the day.

This receptionist recently advised me though that the first appointment of the day would not be that great for us because “the doctor is sometimes late”.  Ah, I see.  So she suggested a 2pm appointment because they’d be back from lunch and the good doctor wouldn’t be late.  Great, I said.  Thank you!

So I picked Jake up early from school and we arrived at the doctor’s office at 1:55pm.  There was another mother and child sat on the floor in the hallway outside his office and a note on the door:

And I saw red.  Unreasonably?  No, I don’t think so.  I went on to tell this other woman as calmly as I could, while Jake raced up and down the hall, that Jake had autism and that I dreaded the next 20 minutes.  She also had an appointment at 2pm!

Jake’s mood fluctuated between giddy, uncontrollable excitement (causing him to run and squeal) and nervous pacing (causing him to moan, cry and try to drag me to the stairs to get the hell out of there).  Twenty minutes can sometimes seem like an eternity.

There was a second note on the door:

So, I knocked on the door.  And knocked again.  No one answered and there was no noise from within.  As Jake ran down the hall and started hammering on another doctor’s door, I quickly stopped him and led him back to Dr Useless’ door to wait.  When he decided to hammer on that one, I was much less concerned with stopping him.  Then he repeatedly flicked their metal mailbox flap in the door and I let him do that too.

I may sound like a bitter and twisted woman but I have to point out that I do everything in my power to make Jake’s life as stress-free as possible.  That in turn helps to keep my life as stress-free as possible.  Autism is a widely-recognized disability that is so much more understood that it used to be.  I’m simply asking for a little bit of compassion and respect for Jake and his situation.

When the receptionist finally opened the door, I did not say anything to her – It wasn’t her fault.  We waited about 5 minutes to see the doctor, which was fine.  But I didn’t say anything to him either.  Why?  Well, what was the point?  I’m not one to shy away from confrontation, but I truly lacked the energy to complain.  Not because Jake was particularly bad or anything, but just because I felt like it would have been wasted energy.

I want the world to see that a seemingly tiny little incident like the one I’ve just described can quickly break down into tears and tantrums.  And I don’t just mean Jake!

We guessed that he was suffering an ear infection but being 3:30am, he dosed him up with pain killers and shhh’d him back to sleep. 

He woke again at 5:30 and I knew that there was no stopping the process.  Jake really did not want to get up, but was very obviously in pain.  Stephen got him dressed while I got dressed myself and Jake and I headed off to the hospital.  There was only one other person in the waiting room.  Yay!

But Jake was not a happy boy.  He was exhausted, in pain and generally p’d off with the world.  We’d been sitting there about a half-hour when Jake coughed and threw up all over himself, my shirt and the floor.  Thankfully, the triage nurse came running with one of those peanut-shaped bowls and a wet facecloth.  I mopped us as best I could and cursed myself for rushed out without a change of clothes for Jake.  I could survive with a wet, stinky shirt but Jake’s was drenched and he kept pulling at it.  My only option was to remove his t-shirt and put his coat on his bare chest.

You can imagine what the doctor thought of me when he finally got around to seeing Jake 2 hours after we arrived!

The good thing about Jake puking all over the waiting room is that they didn’t make us wait out there anymore.  We were shown to a bed where we continued our wait.

The outcome was that Jake did indeed have an ear infection in both ears and the doctor even suggested that it was quite bad.  Our boy must have been suffering with this for a while and simply put a brave face on.  I could cry if I think about it too deeply.  If only he could tell us when he hurts.

Jakey also had a doctor’s appointment the day before yesterday.  You know, with his usual doctor, Dr Useless.  There’s an amusing story there too and it even includes some pictures.  I’ll try to write about that later, but Jakey’s due home any minute so…

We used to have this problem fairly frequently.  We’d have spells of his waking up in the middle of the night a few days in a row.  Then we might go a month without incident, only to have it happen again for no apparent reason. 

But until last night, we hadn’t had this little problem for months.  A very long time.  I wish I’d been keeping this blog longer so that I could look back to see just how long it’s been.

My suspision is that the need to pee woke him up.  When I went in to check on him, his pull-up was wet and I changed him.  He was happy and continued squealing and banging his feet as I left, even though I’d quite sternly told him that he needed tyo be quiet.  I think sometimes he simply can’t help himself.

Needless to say, we were all a bit pooped this morning.  I sent him to school anyway though.  Experience has told me that he’ll fly high, giddy and giggly, all day and then fall asleep early in bed tonight.  I hope I’m right because I’m working this evening and Stephen will be the lucky one who has to deal with whatever Jake brings to the table.

They also have a Smart Board, which is a huge, blackboard-sized touch screen.  I’m looking forward to seeing a bit more of that thing in action.

Anyway, I stopped in to Homebase to say Hi to Jake.  When Nancy and I walked through the door, we heard him cry out and we both instantly thought that he was unhappy.  He’d been left in the care of another EA, who is not his usual EA, although he knows her well.  But as we rounded the corner, we could see Jake standing up on a table, giggling madly, hugging the wall and not letting this poor lady get him off the table.  He thought it was the funniest thing.

But Nancy meant business.  He got called by his full name and told to get down, which he did.  The cheeky monkey.  It’s really true; when the cat’s away, the mice will play.

He’d not seen me yet at this point and I softly said “Hi Jake” from just out of his line of sight.  He instantly recognized my voice.  He turned to me, smiled that charming Jakey smile, flung his arms around my neck and said “Ma, ma, ma“.  

I tell you, that kind of reaction is so rewarding to me.  It melts me every time.

So that was pee #1. 

His EA, Nancy, called at the end of the school day to report that he’d done three pees at school today.  Wow!  The question was then “will that be it for the day?”

No way.  Jake has been a pee’ing machine since he arrived home.  I swear that I’ve changed him about 8 times.

This wouldn’t normally be the type of news that I’d write about but this is so, so out of the ordinary for us.  One day, I’m changing him a couple of times and the very next day, I literally cannot keep up.

I went for a meeting at Jake’s school this morning to discuss his IEP (Individual Education Plan, I believe).  Nancy was there and she mentioned how she and the other EAs found it amusing how in my daily notes to the school, I rate Jake’s day by whether or not he’s pee’d.  And it’s true; I do.  Firstly, it seems to dictate his mood.  And secondly, it gives Nancy some warning that a small flood may be on the way.

Anyway, the IEP meeting lasted about 20 minutes – same as last year – and with very similar results to last year.  Jake has come on in leaps and bounds over the last two years in that school, but his needs still lay in all the same places.  Fine motor skills, toiletting, social skills, etc.

But, as I suspected, it seems that he’s charmed just about everybody there and they all speak of him with fondness.  It makes me very proud.

And now, he’s in bed.  As I’m sure I’ve mentioned before, we put Jake to bed around 7:30 and then he usually falls asleep around 2 to 3 hours later.  But tonight, he went to bed at his usual time and fell asleep an hour later.  This worries Stephen and I because it has often meant that he’ll wake up in the middle of the night and then be set to party.

Since falling asleep about 2 hours ago, Jake has half-woken several times.  He sits up coughs, rubs his eyes and lays down again.

Actually, I probably have not mentioned so far that we have an infrared camera in his room and that we are able to watch him on a small portable black and white TV.  So we can see that he’s OK and still lying down. And that is how we know that he keeps waking up a little.

What is this going to mean for our night?  It’s been a long time since Jake has given us an all-nighter but I never, never assume that they’re gone forever.  As long as we have autism to deal with, we’ll also have sleep issues to deal with.

Jake's Kindergarten Graduation

We are coming up to that time of year again where the kids finish off their school year, receive their report cards and look forward to the Summer off.  It was around this time last year that Jake had his Kindergarten graduation photos taken (see left) and, as with most things Jake-related, they made me cry. 

Not only are they fabulous pictures that show off his impeccable good looks (hey, I’m biased but honest), but they also make him seem so damn normal.  You could look at that photo and not see a boy with autism or developmental delay.  You’d just see a boy who is looking at the camera and sharing a slight smile.  Like every other 6-year old grad student that year.

Immensely proud, I was. 

Even now, a year on, I’m looking at that face in that picture and I just want to wrap him up in my arms and protect him there forever. 

Anyway, seeing as he will now be finishing Grade 1, there will be no graduation photos this year.  I’ll just have content myself with this set for now.

In other news, I may as well rename this blog something like “When did Jake pee today?” because I feel like that is a hot topic in our house right now and therefore a fairly hot topic on this website too.  Did he pee?  Will he pee?  Why is he holding it?  Can he hurt himself?  These are all topics I’ve touch on in the past and will surely visit again.

The answer for now is that (Yay!) Jakey pee’d before he left for school today.  How strange that was.  We try and try but can never get him to release until he’s good and ready and lately that has been just before suppertime!  So we are off to a good start today.  I hope that he pees again at school but I have a feeling that we are asking a bit much.

I’ll keep you posted.

Here's Jakey, doing his impression of Colonel Sanders