3 Year Old Techno Wizard??????

You know a lot of things go through your head when a neuro specialist tells you your son has had a stroke and one of the things that I certainly did not envision that day was that my son would be extraordinarily technologically inclined at the tender age of 3.

Admittedly there are some techno wise people in both sides of the family but there are also those (I won't mention my mom or brother Jeff Majerczak) who certainly are, well less than techo nerds i guess you could say.

So far I think I have mentioned the episode a week ago where Quinn attempted to purchase the playboy channel causing more premature aging and wear on his mother and he reprogrammed my printer, how I will never know because he was not even near the computer. The one time I let him near my computer I regretted it because he deleted the one file I use everyday and removed my security system. All within 5 minutes.

Now for a 3 year old you would think a satellite system and PVR would be complicated. Somehow he has learned how to find the taped television shows/movies and the other day Tom walked into the room to find him with the remote watching his fav. episode of Mighty Machines. The TV had been on TSN before that.

This morning he was sitting on my lap and though I tried to hide the remote I swear he has tuned into its frequency like those annoying key chains we used to have that would beep when you clapped. I of course do not mean to say my son is annoying but his obsession with the remote can be.

Anyways getting back on track, the child took the remote and with no hesitation went to the taped episodes and amongst numerous episodes of CSI NY, Miami and Las Vegas the child went directly to the reg CSI. Freaky but it could not have been deliberate right?

Well he began to watch the opening of the show and got super excited, for whatever reason he only knows it gives him a big kick.

Then, and before I tell you, you should know that to look at the screen CSI is everywhere, i would have to be fully awake to know which was which. So what I thought was a fluke turned out to be WRONG.
He did this over and over until I could not bear the sight of Las Vegas at night any longer and the WHO while they are great, hearing "who are you" 10 times in a row is a little annoying.

So I grabbed the remote from him shaking my head, speechless and put it on the preschool channel hoping he would find something educational other than Las vegas at night. I go to make luch and next thing you know I hear the familiar sound of race cars. Quinn had somehow put the TV on Nascar which while he loves it, I am less impressed. My jaw is dropping lower and lower at this point trying to figure out if their is some unseen being helping him out or if I just really needed to go back to bed and try waking up again because a 3 year old is not generally capable of this kind of thing. I've had 2 before him and nothing like this ever happened.

Later in the day Tom left the room while the TV was on Nascar at Quinn's insistence, I think it was Speed or something like that, not really my thing. When he came back into the room Quinn was watching Michelle Phiffer (sp I know) strut around in a catsuit and he thought it was pretty funny. I don't know though, after the whole playboy channel thing I wonder about him.

After putting the kids to bed we went to our list of shows and what do we find to be the newest recorded program, the first Batman movie. Yup Quinn recorded Batman on the PVR and I really have to wonder if it was an accident. I am anxious to see if he looks for it later today.

Next time you see a child with Autism who does not "appear" to tune in to what is going on around him/her, think twice because appearances are deceiving. One only has to spend a day with Quinn to know he has all his devices about him and a whole lot more.

Mighty Quinn, seriously what is he going to do next. Naked women, Nascar, football and action movies? The child is 3 going on 30. I look forward to the day he starts talking but I am almost afraid of what I am going to hear. You know what they say, be careful what you wish for.

3 year old techno wizard, my God what is next? Mighty Quinn, maybe we better stop calling him that because I think it has gone to his head.

Dance Like There Is No One Watching

That is a quote that my sister in law has hanging in her house and it is one that I have always loved. I do this with my kids quite often, we have our dance time where we turn up the stereo and just dance and have fun. It is something Quinn loves to do, besides liking music he just loves to get down and be silly with mommy and his brothers. It's good for me too.

Today I wish to God I had been with Tom when he picked up Quinn from preschool because when Tom got there Quinn was in a circle of kids, in the middle dancing with a little girl, giggling his butt off and just being a kid like the way it is supposed to be.

He loves preschool and that is putting it mildly, while he was happy to see Tom (who FYI had on his lovely dump clothes pulling the trailer behind the van) but he was NOT happy when he realized he had to leave.

The change in him is nothing short of amazing and in my mind another one of those little, or rather BIG miracles we have been so blessed to see.

To describe what his therapy has been is difficult because it has been a mix of a few things that I tailored to him, but I did use very little ABA because it was not right for him. The principles of Relationship Development Intervention formed the base of his "treatment" I found it to be much more naturalistic and to simplify it is all about helping the child want to be with others, to seek out others and form relationships. I say this all of the time but that was so much more important to us than learning to put a round peg in a round hole.

RDI helps to stimulate the areas of the brain which are often inactive in a child with Autism.

We would and still do spend about 3 hours together (now it tends to be numerous times through the day) and I did all kids of activities from normal everyday tasks, to games, songs, fine motor, matching you name it we do it but there are always a number of goals embedded in why we do each thing and I spend a lot of time testing his limits as far as focus and anticipation, mutual enjoyment etc.

We have definitely learned through all of this that Quinn is a very bright little boy whose receptive language skills amaze me still because the odds were not at all in favor of this being a strength. He can watch someone do something once and then days later he will repeat it.

This is not something he has seen anyone do BTW, just to clear that up before I go on... but last week I was making the boys lunches and I heard the familiar sound of Quinn playing with the TV. He likes the sound it makes when you turn it on and off (sounds like a bad Atari game) but this particular time I checked around the corner and I see “we are currently processing your order for the Playboy Channel”
I'm pretty sure I sounded like a wounded dog grabbing the remote from him and I see the progress bar like you have when you download. When it finished I held my breath and THANK GOD it said “sorry you are not currently connected to a phone line” Now that is why they have parental controls. Of all the hundreds of channels you could have clicked on, it just had to be that one because when Quinn does something he makes a statement. Then I could not stop laughing for about an hour and he was jumping on his mini trampoline looking at me with a cheeky grin and giggling.

He keeps me on my toes. Somehow he reprogrammed my printer just by using the panel on the front and I had to uninstall then reinstall the whole thing. He is also obsessed with getting his picture taken??? He now will shove the camera at me (etiquette is not his forte yet LOL) and then sit there with his goofy grin waiting for me to take the pic. THEN he grabs the camera to see the screen. Geez talk about modern day kids, if I pulled out the old point and shoot 35 mm he would be confused. He poses too, it is hysterical.

One of his big things is singing of course the words are not understandable but he walks around singing and smiling all day. He also has a habit of doing this from 2:30-5;30 in the morning EVERY night but he is getting better, maybe only every 3rd night. But LOUD, the child is loud but happy and who in their right mind would want to stop that. My mom knows all about this having spent 2 weeks with him in NYC and I of course would just laugh. The secret to this is earplugs or an MP3 player and pretending he is not their even though it sounds as if you are smack in the middle of an very very off Broadway opera or musical. I always hope the hotels we are in have thick walls and the ones that don't well that might account for the bangs on the ceiling or floor. Oh well!

We are back to Sick Kids next month and he will likely have a few appointments in the next few as we have been putting them off as long as we could. What I am looking forward to is having him walk into the examination rooms and down the big hallway with the footsteps. The last time he was there he could not walk. He very likely will plant himself in front of the elevators which serve as a very big deal to him and I have this feeling I will be riding them for an hour or so.

The child that will for the first time be walking into that hospital is not the same one who was there last. I'm just going to let him loose because I can and run after him as he giggles his way down the halls. We need to make new memories there, the old ones are not so good. If anyone asks why I am letting my crazy Quinn run down the hall, my answer will simply be, because he can.

There is nothing that child can't do, I truly believe he was put here to teach what it means to have inner strength, to not take no for an answer and to show that no matter what religion you believe in miracles do in fact happen everyday. When you are open to seeing them you will see that even the smallest ones need to be celebrated. And the big ones well after you catch your breathe and realize what you are seeing is in fact real, throw the biggest damn party you can think of.

Most importantly never look back, never forget where you came from but have faith and keep your eye on the future.

My son was dancing holding hands with a girl, wow.

Number of Children Awaiting Autism Treatment Balloons

A media release from NDP Leader, Andrea Horwath

Number of Children Awaiting Autism Treatment Balloons
location: Queen's Park
date: October 26, 2009 - 1:00pm
body:
Ontario’s NDP Leader Andrea Horwath is citing more troubling facts concerning the McGuinty government’s approach to treating Ontario children with autism.

“The government is cutting off more children from IBI when schools are not able to provide the therapy. Instead of funding treatment, the government is allowing waiting lists to balloon and children to languish,” Horwath said in the Ontario Legislature today after revealing the government’s latest quarterly numbers for April to June, 2009.

Compared to the previous quarter, 1,649 children are now waiting for IBI therapy. That’s 136 more than previously reported (1, 513) and a 9 per cent increase in just three months.

“When will parents see adequate service levels and proper funding for children’s autism treatment?” Horwath demanded of Minister of Children and Youth Services Laurel Broten. “It has been six years. These children and these families cannot wait any longer for this government to get its act together when it comes to the autism file.”

The government is cutting off more children from IBI even though schools are not able to provide the therapy, Horwath said. The latest quarterly statistics from the ministry show another 114 children were abruptly cut off.

“The regular quarterly numbers don’t lie. Why are more children with autism waiting for treatment, and why are more children having their autism suddenly cut off and terminated?” Horwath said. “The McGuinty government’s autism program is not living up to the Premier’s promise of ensuring children with autism receive treatment regardless of their age.”

Horwath, the MPP for Hamilton Centre, recently brought the autism file into her portfolio as Ontario’s NDP Critic for Children and Youth Service.


-----------------------------------------------------------------------------------


From House Hansard 10/26/09. The new Minister of Children and Youth Services has spoken:

AUTISM TREATMENT

Ms. Andrea Horwath: My question is to the Minister of Children and Youth Services. According to her ministry's most recent quarterly numbers, the McGuinty government's autism program is not living up to the Premier's promise of ensuring that children with autism receive treatment regardless of their age. The IBI/ABA numbers for April through June 2009 continue to be troubling. Compared to the previous quarter, 1,649 children are waiting for IBI, 136 more than previously reported, and another 114 children have been abruptly cut off.

Why are more children with autism waiting for treatment, and why are more children having their treatment suddenly cut off and terminated?

1100


Hon. Laurel C. Broten: This is a file where I'm very pleased to be able to build on the work that's been done by our government and a variety of Ministers of Children and Youth Services since we took office in 2003. We've made a lot of progress. Kids are getting the help they need, we've expanded those services, and we're working to make sure that families also have the support they need. We're working to maintain that progress and push ahead, working with parents and experts. Over the last couple of years, we've been examining how we can do better for our kids in Ontario.

I had the opportunity last week to visit Surrey Place and speak directly with the experts and find out how they think we can best help kids in Ontario. There is more work to do-there is always more work to do. We continue to build on the efforts that we've put in place to make sure that Ontario kids get everything they need from our education system and that envelope of services around them.


The Speaker (Hon. Steve Peters): Supplementary?

Ms. Andrea Horwath: It's been six years. These children and these families cannot wait any longer for this government to get its act together when it comes to the autism file.

The regular quarterly numbers don't lie. The government is cutting off more children from IBI when schools are not able to provide the therapy. Instead of funding treatment, the government is allowing waiting lists to balloon and children to languish. When will parents see adequate service levels and proper funding for children's autism treatment?


Hon. Laurel C. Broten: I want to put some key facts on the table. We removed the previous government's age 6 cut-off and more than tripled autism spending, from $44 million to $165 million. We've more than doubled the number of kids getting IBI treatment-more than 1,300 now, up from just over 500 four years ago. We've introduced respite programs that serve almost 7,000 kids. The growing waiting list is not acceptable. That's why we've put more resources into the system.

But I would say that the numbers being brought forward by the leader of the opposition are consistent with numbers that we've seen in the past: 114 kids have completed the services for IBI, and we now have 1,262 kids receiving that service.

We need to get service to more kids. We need to broaden that continuum of support. That's why we're working with world-renowned experts like Peter Szatmari and Nancy Freeman and why we've brought that group of expertise to the table to make sure that kids in our schools get the treatment-


The Speaker (Hon. Steve Peters): Thank you. New question.

Ahem, excuse me Quinn

To think, a year ago nobody knew if he would be able to walk. Now look at him. This is what we found after hearing an extraordinary amount of laughter going from Tyler and Ryan's room. There was Quinn with a busted look on his face on the TOP bunk. He actually clmbed up the ladder and onto the bed because Ryan had some cars on there that Quinn wanted.

Well he certainly has earned his monkey nickname and we know put the ladder on top of the bed each morning because while it was a funny moment it scared the you know what out of me at the same time.

3 Months Post Op

Vote PHACE Syndrome To Be Featured On The Doctor's TV Show

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Family Vacation Part 1 Minden (In the Kawartha's)

For the very first time (since Quinn was born) we went on a vacation that did not include doctors, surgeries, appointments or PHACE related conferences. What an amazing thing that I likely would have taken for granted years ago. To do a normal family thing, well our normal anyways which is just fine by me.

Every time we stopped we made sure it was a WalMart so Quinn would be happy. I used to cringe doing this out of town because there was a time when he would attract the attention from people across the store. I find now that we can go in somewhere almost incognito. People only look if they get close and when they do they are likely trying to figure out what "happened" The only ones who say anything are kids which is not big deal, I usually end up feeling bad for the parent who generally looks mortified that their child said something.

No, the only thing that might be weird about Quinn's time in WalMart is that he is the only 3 year old NOT having a fit or begging for a toy.

Quinn and Ty (Quinn is deep in the A-Zone (autism) focused on the ride and watching the big trucks)

Tyler asking for the 500th time how much longer the trip would be, and Quinn's response

Ryan is SOOOO good with Quinn

He covers his ears a lot now as you may have noticed

It's hard to believe at one point there was a ginormous hemangioma on and in that beautiful face

Ah his lip.....a bit of a complication, the overhang is back BUT on the bright side look at his cheek,

Dr Waner sucked the rest of that hemangioma out and now both cheeks are the same size. The scarring looks different everyday and will continue to change for another 4 months

Hopefully he will only need one more surgery to touch up the lip now that his face is symmetrical

We are getting closer!

Sooo laid back, can you tell he is a real handful *wink*

My Mighty Guy climbing stairs STANDING for the first time

(Prenatal Stroke: 1/Mighty Quinn: 1,0000000)

Still kicking that stroke in the Asstronaught

Uncle C playing guitar and singing he was obviously doing a good job because Quinn would have had his hands over his ears like he does when Grandma M sings to him on the phone

This picture is so precious. I only wish this awesome kindergarten teacher (well Gr 1 now) could teach Quinn. He adores his Uncle C

3rd times a charm for this Tommy Hat, all 3 have worn it. It's for a 4-7 year old but it covers him up really well, if only he'd leave it on!

Can't remember if I mentioned this yet, but he does not lick very much anymore, the only problem is that when you eliminate one behaviour it gets replaced with another, I thought the licking was bad until he started chewing his shirts (thus the tank top to protect the poor Ramones)

Look at those ribs! We really do feed him

He was stimming like crazy over the waves hitting the shore. he was flapping so much I thought he was going to get some air!

Did I mention he chews his shirts..........?

This is a cute picture....but it is what it means that is so important. When he was assessed and diagnosed he was not exploring whatsoever, but now he has started taking a serious interest in his environment and for him water has always been "scary" so this pic is pretty big

Autism: 1,000/10,000

I took quite a few pics on that part of our trip but many were of the boys in their bathing suits, for reasons I am sure you understand I did not post them where they could be seen by the wrong people. The full album is on my facebook account, which is private so you can see them there.

Tomorrow I will post the pics from Niagara Falls where the kids had a BLAST even though it was over 100 degrees (hey Northern Ontario girl here, humidity kills me)

I will get around to doing a proper update as soon as I can. School starts again on Tuesday. Until then I will be that person in the Staples/Office Depot commercial singing "It's the most wonderful time of the year"

1 Month Post Op-Liposuction of Regressed Hemangioma and Resurfacing of Ulceration Scarring

Today marks one month post op for Quinn since the liposuction. What a month it has been. I have never seen a child's face go through so many different changes not only on a day to day basis but at times within the very same day.

I haven't been posting pictures because I think the results would seem misleading to a point. I know I keep reminding myself that it is going to be 6 months before we see the final result. Healing from lipo especially when you have extensive fibro fatty tissue like Quinn does/did takes even longer.

The incision from his first surgery on his lip has virtually dissipated and I spent a good amount of time today comparing photos from before he had Fraxel and the amount his scarring has already smoothed out is shocking to say the least, especially in the area beside his mouth. There used to be tethering and an indent and now dare I say it, it is beginning to look like normal skin.

We have a twice daily routine which consists of putting the Rejuveness cream on the scarred areas and massaging the areas to promote collagen growth from underneath. That is how Fraxel works, from the inside out. There were a couple of days where it actually looked really bad all of a sudden and made me nervous but I keep telling myself to remember how far he has come and that this is not an overnight fix.

The photos I will post today will show how much smoother his face is, it is truly remarkable, that and the wonderful job that Dr Fay did removing the big nasty orbital hemangioma. It has been wonderful to see him with both eyes open. That eye is very sensitive to light still and when he goes out in the daylight it tends to close up again. There is little doubt in my mind his vision is damaged in that eye but there is also little doubt that Dr Fay saved what vision he does have and we are eternally grateful for that. He was right about the lid though, it is not functioning "that" well and is floppy and rolls under so he will need that surgery to shorten the muscle which was destroyed and completely invaded bu the hemangioma.

Now his lip, ah the lip is still being a bit of an issue and I hope that it is swelling causing the right side to collapse again. Right now it doesn't look much different than it did before we started surgery and likely won't until all of the swelling has subsided over the next few months. He did have a symmetrical lip for a few weeks though and I know it will be again. Likely he will need more surgery on that area, but then again who knows with Quinn, he is full of surprises.

He was annoyed at me taking these pictures this morning because I had just put the cream on and he was watching the CNN ticker (he loves it) and didn't feel like having a camera in his face. In one of the pictures, well you can't really see it because I cropped it but he was covering his ears during a commercial (don't ask, we have no idea especially because he does it during commercials he likes)

So her is Quinn one month post op. In another 5 months we will know the final results and hopefully that cheek tightens up and his lip pops into place. What a weird thing to say about your child but alas these past 3+ years truly have been the definition of weird, but miraculous as well. My God he has come so far. He even has a hint of a few eyelash hairs as you will see in the photos, not enough for an eyebrow but there are hairs there I tell you!

Here is a great visual reminder of how far my little man has come.