Saturday, September 01, 2012

What happened to August?

I'm really not sure where August went...I woke up today and it was September!  Its safe to say that the month was pretty uneventful. JJ was having a few emotional days, frustration over a game on his computer I think.  He rarely cries, but can get mad pretty easy, three days last week he started crying. It took me by surprise and I had to mute the tv to make sure it was actually him and not the game he was on.  But low and behold, it was him. I went to his room to ask him what was wrong and he got all embarrassed and said he was "fine"!  I tried to dig further to find out what had caused the tears..but he wouldn't share. 

I wasn't shocked by that, aspie kids rarely share their emotions or causes of them. I have found in the past that if I asked a lot of questions I could sometimes find out what his reason for an outburst was. And to be honest, his reason wouldn't make sense to me. Of course compassion for his feelings is number one, they need to be validated regardless if they make sense to me or not.  More often than not, he didn't know how to explain it so I never got an answer.

Aspergers is as confusing for me as it is for him sometimes.  I read as much as I can on the disorder, and still some of his behaviour and quirks amaze me. Even now 11 years later.

He starts middle school in 4 days. He missed the class tour in June with the rest of the gr.5 students from his elementary school, due to pink eye.  I had to wait until the 23rd to call the middle school and ask if he could get a tour to alleviate the first day jitters.  We went on the 24th and met with the guidance counsellor and he gave the both of us a look at the school.  It also turned out that he got to meet his new teacher, which was a bonus.  

She seems very nice and I managed to give her a quick run down on some of his quirks that she might encounter. My only concern is that he is in a double class, two gr.6 teachers and two classes in one large room. I don't know if he will be able to keep focused on his teacher or if he will be looking and listening to what's going on over on the other side of the room. If the subject his own teacher is teaching doesn't grab his attention I know he will wonder off.

The other teacher is a male, who told me he has a son with autism, so I know he will be an asset to JJ's teacher if he gets off track. I'm also hoping that a couple of his "friends" from last year that contributed to his getting in trouble are in a different class than he is.  I am really hoping that as he puts it he "makes some new friends and they are nerdy". lol   He is really excited about the new school especially when he saw they have a large computer lab and he can't wait to take the class. He is also going to try out for the school soccer team, I hope he gets picked because he loves soccer and it would do so much good for his self-esteem. So he is excited and I am a bit nervous.  Older kids can take such advantage of him and that is a worry of mine.  I know it will be a day at a time like last year was, making sure he stays on track and keeps in with good kids.

I hope all of you with children going back to school have a great first day! 

Monday, July 09, 2012

So this is July...

Summer has been warm, with quite a bit of rain mixed in,,and of course lets not forget our famous East Coast humidity. I'm not sure where June went , but it was over with before I knew it. JJ's done school and has taken his place in front of the lap top wanting to spend his waking hours there.  We did our yearly trip to Chrystal Palace and took along JJ's younger brother JC this time. They were fine together while they were going from one ride to another and playing the arcade games.  Unfortunately the car ride home was horrible. JJ kept getting louder and louder, all worked up. I repeatedly asked him to lower his voice and to calm down, but he wouldn't stop.  I ended up yelling at him, big time yell, and used the words "shut up" which I hate!!  He still wouldn't calm down, so I had to take his computer time away from him for two days after the loss of one day didn't make him stop either.  Of course then I got a full out crying fit from him and a "I hate you", the three most dreaded words any gr.mother wants to hear. The rest of the drive home, all 40 minutes of it was quiet, but it spoiled the ending to a pretty good day.

I had my dr's appointment with Rheumy this morning. No real concerns except for the weird muscle spasms. He said they "would happen" with Lupus and more frequently the older I got. My first thought was "oh great"!  I got my prescription refill and another appointment for January.  As soon as I got home I took a bad spasm in my left hand. My baby finger suddenly did this exorcist type thing where my knuckle disappeared and the tip when to the left while the rest of my finger went right. It honestly look like it was broken. My hubby saw it and his eyes got real big and he asked "what did you do to your finger?" to which I replied "absolutely nothing".. he had only heard about these spasms from me, and I was glad that he got to see what I was talking about.  Just to confirm that I wasn't totally a nut case.

After about ten minutes of rubbing my knuckle joint and my hand up towards my wrist, it went back to its normal shape.  If only it could of done this while I was in the dr's office. Next time I will grab my cell phone and take a video so I can show the dr. what it exactly looks like because I know my description just didn't do it justice.

I hope you all have a good month!

Wednesday, May 30, 2012

I smiled

I was looking for something and had to go through our infamous junk drawer.. and there it was.. I giggle now just writing about it.

A while back JJ got in trouble at school because he punched a girl, in the arm, not the face. She was in his face on the play ground, he told her to "back off", but she kept at him, he told her he was going to punch her. She told him he couldn't.

Asperger children don't like people being in their space .  To a child with Aspergers, if you say to them, "you can't punch me" to them, they hear you don't think they are strong enough to punch, that you don't think they are capable of do so.. not the reason "you can't punch me because I'm a girl"  The logic of an Aspergers child.

So here are the 4 apologies I found in the drawer, you can see that as I continue to try to explain true logic and right/wrong to him after each apology he writes, they get different in tone and sincerity.

Dear_____ I am really sorry that I punched you. I punched you because you doubted me so that made me angry and then I punched you. But my grand parents had a talk to me and they say I will never do it again.

Dear______ I am super sorry that I punched you and I promise that what my grand parents have told me is it will never happen again.

Dear______I am deeply sorry that I punched you, but I told you not to make me angry. It has been dealt with at home so I can assure you that it won't ever happen again.

Dear _____I am deeply sorry that I didn't control my temper and I punched you. My grand parents had a really really really long talk with me and I now understand what you meant when you said "I couldn't punch you". I can't punch you, or anyone because its called assault and is illegal and not nice to do. I can assure you, that since doing something wrong like this means I loose my computer and tv, I won't be punching anyone ever, ever again.

I hope this brought a smile to your face today as well.. if you have a child with Aspergers..I'm sure it did because you can soooo relate.

Monday, May 28, 2012

Memories of years past

What an uneventful weekend..not that I mean that in a bad way.  If you deal with an Aspie child, you fully understand my statement.  Its great not to have any major problems.  Its such a joy to wake up Saturday morning and cook JJ's favorite breakfast, bacon and eggs and have a clam eating experience.  Of course you could cut out the eggs and just give him all bacon and he would like it even

We went to pick up a couple of things today while he went to visit his parents and younger brothers. As N and I were going into wal-mart a father was carrying out a screaming child, around 4yrs old I would guess. N and I looked at each other with that OMG how many times was that us over the years! It took me back to those memories that I don't like to revisit. The public melt downs were always the worst to experience. Not so much that people didn't understand, but that they were we had done something wrong. Or even worse that we were bad parents! How many times did I hear people mumble "he just needs a good swat on the ass", or "boys does he have discipline problems" or even worse still.."spoiled brat".

Those comments came from those who suspected that JJ was screaming at the top of his lungs because he couldn't get a toy or something that he wanted. The truth was, just the size of the store, the bright lights, the hum from the lights, all the people talking, the cold metal shopping cart.. it was sensory overload for JJ and he would melt down.  It wasn't his fault, and nothing we did would make the situation any better for him. He couldn't verbalize how he was feeling, and he didn't understand why he felt the way he did, toss in two gr.parents who were trying to learn as much as they could about what was wrong with him without any medical help and you had at times a complete disaster.

I don't miss the early years, but what I do wish is the calmness that we experience now could of been in his reach when he was younger so he could of had a happier childhood.  I often think about how terrorized he must of felt inside at 3 or 4 yrs of age, with all that his mind was saying to him. I think about how it would of been nice to sit down and read a book to him, tuck him into bed and have him get a good nights sleep. Instead he would be awake screaming in his bed with me sitting beside his bed crying until all hours of the early morning.  I think about how he never got the enjoyment of playing in a sand box with a bunch of dinky toys or trucks, because he didn't like the feel of sand and he had no interest in typical boy toys. I think about all the meals that consisted of me begging him to try a bite of this or that. Until I learned that he would only eat one specific food for months at a time and then switch to something else for extended periods.

Life with a special needs child is filled with learning, its a daily learning experience and it will never end. The thing is, we need to embrace it and go with it and know that it does get easier, it does get better, and its all done for the love of the child.  I love JJ and so glad that he has been a part of my life.

Friday, May 25, 2012

A new room for JJ

Where has the school yr gone to?!  I say school yr and not year because my life is measured it seems, by the length of time is left before summer vacation starts. Right now there is just a little under one month left, then soccer time, pool time..and I'm sure lots of roblox time on the computer will hit our household.  There hasn't been a whole lot going on around here to be honest. JJ has had an extended period of not getting into trouble at school, and things here have been calm. I love these times.

I also got notice that JJ's disability paperwork has finally gone thru the Gov and I got a check three weeks ago. Since its "his money" in my mind, I got him to look at furniture and then bought him a complete new bedroom set.  He is almost 12 and has old everything, from bed to an old antique dresser that belonged to N's gr.parents. I then set about painting the spare room his favorite colour orange, with some pretty nice navy blue stripes (if I don't say so myself) on one wall to break it all up a bit.  I did it during the day while he was at school and left the door closed so he had no idea what surprise I had instore for him in there. This room is a little bigger than his current room and the new bed will look better on a side wall than the way his current bed is sitting in his room now. He was so excited that I painted for him, and super excited when he saw it which he exclaimed "I guess I better like the colour orange for a long while huh?! lol

It was a painful experience for me since my joints just don't like me doing anything. But with the help of some Tylenol every 4-6 hrs I got it accomplished in a week. The furniture arrived, and then the horrible task of trying to get N in the mood to put it all  Of course with JJ asking each day when he would get "around to" putting his bed together really  But papa got it together for him in a weeks time, its a beautiful set consisting of a loft bed sitting on top of a desk on one end with a built in light over head and a drawer for all his "diary books" and a book case with two drawers on the other end and of course his favorite part is the open part in the middle where he can sit and play under his bed. It really is the perfect bed for a boy. I also went out and bought him a 24" flat screen tv and wall mount so he can lay in bed and watch tv and chill out before bed. The hard part was finding a comforter that had orange but wasn't girly with flowers all over it. I did manage to find THE ONLY orange mixed coloured comforter in town! And it looks really good.
It was nice to see that illusive smile on his face when he got to spend his first night sleeping in there. Of course the dresser is still in its crate and not put together yet, but I'm sure with JJ asking him every day it will get done this weekend after golf, of course.

I left his old bed and dressers in his old room and will now use that for the spare guest room and where our cat Dora now likes to curl up on the bed and have a mid afternoon snooze.

Well I should run for now, JJ is due home from school and I really want to run out to Walmart. I hope he is in the mood to go since I didn't mention to him this morning that we had to go out shopping after school and, well, as I have said before..Aspie kids don't like things sprung on them. Wish me luck!

Tuesday, April 24, 2012

Frustrated with school

Today didn't start off too well.  N drove JJ to school because it was pouring rain.  He walks into the school and the vice principle asks him where his glasses were.  JJ replied that he had forgotten them at home, to which the vice principle told him to go home and get them to save "Nannie a trip bringing them to school for you".

So off he goes drudging back home rings the door bell, waking me up since it was one of my "can't sleep nights".  When I open the door, there he is dripping wet.  Coat was soaked through, feet were squishing wet as well.  I was so pissed!!  What is the sense of giving him a drive to keep him dry to have the VP send him home?!  Maybe he was trying to get him to be more responsible to remember his glasses, or his book bag, or like last week his bike helmet. But this is a child who has a memory like a sieve when it comes to things like this.  Its part of his disability, if it was a fact about the world wars, or something else that has meaning to him..then he would remember. But Aspie kids are famous for not giving a rats behind about little things like glasses or book bags.  Now some of you would say "why didn't he have on a rain coat and rubber boots". Well for those of you who don't know, Aspie kids have texture issues with clothing.  JJ doesn't like the feel of the rubber rain coats and hates rubber boots with a passion..I have tried to get him to wear them, but they just get passed along to his younger brothers. Life with an Aspie is not that simple, its very complex.

Personally I think that the VP just doesn't get it.  I think it has gotten to the point now that he is just picking on JJ and I am really frustrated.  I got him to change his t-shirt, put another coat and sneakers on and I drove him back to school with a note to hand to the VP telling him NOT to send JJ home again in the pouring rain again if he forgets something because it doesn't "save me a trip".

I wish that all teachers, principles, VP included need to take a course on ASD kids,, it wouldn't take more than one day to run through some of the most common things that these kids have in common and how to handle the quirks they have. A couple of parents could put together some material for them to read, but you know what.. the majority of teachers hate parents telling them how to handle their child. I have run across this time and time again.  There just is not enough people caring about these kids and its frustrating the shit out of me lately!

So go the battle... two more months of school...

Monday, April 23, 2012

Please vote for JJ's bottle picture!

This is my 10 yr old gr.son Jacob. He has Aspergers Syndrome. There isn't a lot that will bring a smile to his face and he hates having his pic taken. So I was really shocked when he came out to the living room and asked me to take his pic with the bottle of Jones Soda and the green apple. He loves your soda pop and asks for me to buy some every grocery day. Of course I He has had a really rough year at school because of bullies and this would make him so happy to be on a label.

Please vote if you haven't already, competition is stiff. There is nothing to sign up for, you don't even need to give your email and you can only vote ONE time. PLEASE help my gr.son WIN and vote for JJ's picture! Click this link, click on the "rate this photo" section pick "" and then click "vote" underneath. It will just take a minute of your time and will make him a very happy boy. Lets make him a winner by getting on the pop label !!!!!!! TY

Wednesday, April 04, 2012

What makes him happy, makes me happy

I remember JJ's teacher making the comment, "he never seems happy".  I told her that was common for a child with ASD. After all I explained, they are restricted in their emotions to angry or sad and because their interests are also markedly restricted if they aren't doing something they love, you won't see them happy.

For people who aren't around children with ASD, they won't pick up the subtle changes in their reactions to different things. Like going grocery shopping is a horrible task to JJ, he will drag his feet all through the store and  thinks its a waste of time, although he knows we need to buy the food if we are going to eat in the coming week. lol  But if you tell him he has two hours on the computer he will race into his room and turn on the laptop before I can blink an eye.  That is JJ happy.  He loves his laptop, in fact the only time I have seen him happy enough to cry was the day we gave it to him. I will try to put the video on cause it really is touching.  His desktop computer had died the week before, and he was using my laptop in the video. He asked if he could save something, and I had said "no", he then says "how come" and I replied "because you will be able to save it on your own" and his Papa brings out the laptop from behind his back.  That was one happy child,  just for a few minutes..but it did my heart good to see that happiness flow down his cheeks.

When you deal with a child with ASD you need to take those moments and treasure them.  The only other time I get to see him smile and look happy is when we go to an indoor amusement center a couple hours away from our home town.  We have taken him every year for the past 4 years and he spends the day ridding the roller coaster and bumper cars. N and I sit on the bench and watch as he runs to get the back seat on the roller coaster before someone else does.  He loves going, and I am hoping next year we can take him to 6 flags in Montreal and let him see what a big amusement park is like.  I know it will blow his mind.

Take the small moments where you can find them, they are so few and far between, but worth it!

Saturday, March 03, 2012

Oh Winter how I hate you

I do hate winters. My fingers and toes get so cold I loose the feeling in them, of course this also happens to my fingers if I take something out of the freezer too. Its caused from Raynauds syndrome which can go along with Lupus.. 

Its a pain in the butt but ya know what there isn't anything to do about it but to keep some warm mitts handy and to try to find some warm socks. But I must say we have had a really good winter here on the East Coast of Canada. We have only had a little snow and one day so far that was -27 and I stayed inside all day. Hubby dropped of JJ to school so I didn't even have to keep my fingers crossed that my car would

This month has been terrible for JJ at school again! He was pushed by his bully on the play ground and hit his head on the ice, fell off the climbing wall in gym and hit his head and passed out in class and hit his head.. all in the same day! Needless to say he ended up with a concussion and was home from school for a week and then when he got back to school the next week it was no outside time or gym just to keep him safe. I had a big meeting with the principle, vice principle and teachers to see if I could give them some clues as to how to better extract information from JJ when things like this happen.   I say extract because thats what you have to do with a kid with ASD, its like drawing it out one clue at a time.  Aspie kids answer your questions with a direct honest answer. But if you don't ask the right questions you don't get the whole picture or the whole answer. Like when he fell off the climbing wall, he was crying and when his teacher asked him what happened he said "I fell off the wall" he didn't say "I fell off the wall and hit my head" so the teacher should of asked "did you hurt anything" and he would of told them.  When he was pushed in the yard, the same thing happened..he told the teacher that "so and so pushed me and I fell" the teacher didn't ask if he got hurt so he didn't tell her that he hit his head on the ice and had a really bad headache.  

The worse part is no one from the school called me, so I didn't know all this had taken place. When he got up the next morning which was Saturday, he said he was "dizzy again and felt sick to his stomach..just like in school yesterday".  Hold your horses, what do you mean like yesterday?  So I had to extract step by step what had happened at school Friday. That's when I got the whole story about how he had hit his head three times and that his eyes were blurry and he had a headache.  Off to the ER we go.

With his symptoms we got in within 15 minutes and not our usual 12 hour wait! He was diagnosed with a concussion and told to stay quiet for a week and then limited play the following week when he went back to school.  I wrote an email to the principle Saturday afternoon when we got back home and she replied promptly Monday when she got it. The meeting was set up for Wednesday and it went well, well as well as can be expected I guess.  I did let them know that once again I was disappointed that his bully is not being dealt with strongly enough and that I wasn't contacted by anyone about him getting injured on their watch. My theory is that they are just biding their time with this bully because he will be out of their school come June and not their problem anymore.

Now fast forward to the end of February, and he gets in trouble for slapping a girl across the face. This girl I think has a crush on him. He still thinks girls are gross and she continues to chase him, push him, get in his face. Getting in his face is the worse. Aspie kids like their space, getting too close is a no no. He has told her to leave him alone, every day he tells her that according to JJ. And yet she just continues to bug him hunting him down the minute they go outside.

Well Monday, she pushed him down in the play ground twice and took his hat, ran away and buried it in the snow. He did as I told him, he walked away from her. When they got in side the classroom she said something about him to some other kids and he got mad and slapped her. It was his final straw he said. 

The vice principle called and told me what had happened. I should of asked to speak to him, and gotten the whole story right then on the phone,because he didn't tell them what had happened out in the yard, only that he slapped her because she had said something about him to the other kids.  He of course got detention at school and I took his computer and phone time away from him as punishment here at home. When I asked the right questions I got the full story of how much she is bugging him/pushing him around etc.  After telling him again that "you can't hit anyone especially a girl" he says "so some girl can do what she wants to me and I can't do anything back"? How do you answer that to a kid who is a logical fanatic? Its so hard to make that logical.  I just had to tell him that hitting anyone is called assault and its against the law, and that goes for girls hitting boys too. He wanted to know when she would be arrested...

I am still saddened by the fact that my gr.son has learned to hit, push, slap...all at this school in the run of a year and a half.  He still asks to go back to his "old school" where he was safe.  How sad is that! 

He is off to middle school next school year, I am so keeping my fingers crossed that his bully doesn't track him down and that there will be enough different kids there that his bully will be put in his place. By that I mean that this boy thinks he is the cock of the walk because he has gone to this school from gr 1-5 and thinks he owns the school yard. He has a following of three other boys who do what ever he tells them to, his little posse.  At middle school he won't be the big shot, he will be a gr. 6 er just like all the rest of them entering middle  school.  I also am going to see if I can get JJ interested in something at school to keep him out of trouble. Maybe computer class or some sport.  The whole idea of middle school is scarring me.  The only thing he is worried about is having to take "health class".... lol  Oh how I wish that will be our only thing to worry about.

Monday, January 16, 2012

Use you head people!

Lately I have seen people writing about how they don't want to vaccinate their children. Facebook and blogs on the internet are spewing this garbage out there to the vulnerable, the easily swayed. 

To be honest this really makes my blood boil. These people are so misguided on what the role of the vaccines is, how they help keep us all safe and have bought into the "Hollywood hype" that vaccines cause ASD or what ever their child has been diagnosed with. They are written by people with NO health care backgrounds, they are not Nurses , Dr's or scientists and can only site blogs as their so called "information sources".  When confronted they are not even willing to allow a posted comment by a "pro-vaccine" person.  They are afraid their "following" will read another person's view and no long buy their misinformation as "fact". Their facts are nothing more than twisted facts with important information left out changing the whole context.  They prey on infusing fear into parents.

My thoughts and personal experience is this... 
The reason we are once again having outbreaks of measles, pertussis and whooping cough etc, is because people are NOT getting their children vaccinated like they should. Thus diseases that have been out of regular circulation for generations are making a come back and putting us all at risk. The diseases we are being protected from in the form of vaccines, are dangerous and kill when your not vaccinated. Here is some information on measles, which some think is not a dangerous disease but an inconvenient childhood illness. or

Our immune system is put into action by getting the vaccines.  They don't cure us from the disease, they boost our immune systems so our bodies build the immunity necessary to fight the disease. I do not go for the "Hollywood hype" that has been spread over the years that autism has anything to do with vaccinations.  Since I am guardian to a gr.son with ASD, I can personally tell you that he born with it.  The signs were there from infancy. Anyone who has a child diagnosed with ASD of any form/degree, and is willing to do some reputable research.. really look/take notice, and most of all be honest with themselves,, will tell you that the symptoms/signs of the disease were there long before the vaccines were given to him/her.  But it does take guts to admit that its a genetic disorder and not blame vaccines.

People want to be able to lay blame to "something" instead of looking at the fact that there are genetic components causing this.  Its easier for them to handle the diagnosis if they can blame "something", sue over "something" instead of knowing they have a genetic flaw, their parents carried that flaw, their gr.parents. Over many generations the flaw has become more pronounced.  Heck in our family alone, we have the Lupus gene, heart disease, diabetes, OCD, ADD... I could go on and on.  All these passed from generation to generation getting worse or mutating within each generation as we procreate with others that have "gawd knows what flaws" on their side.  

I saw a news show that did a study where 2 or more children in the same family had ASD. The first child had been immunized, the parents held off any vaccines for their subsequent children buying into the theory that the vaccines were the cause. The other "non vaccinated" children were also diagnosed ASD despite this. How does this not speak volumes to the validity of that theory?  Those that turn a blind eye to scientific proof do so because those parents do not want to admit their own genetic code, DNA is flawed and to blame. They simply can not handle the truth.

To be honest I am surprised that ASD didn't raise its head earlier in our family... but it did, and we deal with it.  I would never advocate for anyone to stop getting vaccines.  The diseases that mutate now and come in from other countries are far worse than anything we have seen to date and will only get worse as years go by.  

People who are buying into the notion that vaccines are causing their children harm are misinformed...but lets go with their theory for just one second. If vaccines cause ASD or anything else these zealots are spewing, would we not all have ASD, or being more least one out of every two people?  And this is just not the case.

We have all been vaccinated as children, billions of vaccines have been used since 1718,and they were responsible for stamping out typhoid,smallpox etc. They are keeping us safe and have kept us safe for almost 300 years.  The fast food and processed food that is set on the dinner table or at the drive thru's are a much bigger crime in my books than vaccines. Yet parents who have sworn off vaccines are willing to feed their children this garbage. Why?

People who do not get their children vaccinated are putting your children and my gr.children at rick.  Many of the diseases that the vaccines have helped control are showing back up because of people not using these valuable vaccines, how scary is that?

Do you know if the child sitting next to yours in daycare/school has been vaccinated? Are you willing to risk your child's health/well being, their life even, not to ask that question?

As a person with Lupus, if your child is not vaccinated and contracts measles for example and I happen to be in contact with your child or touched a surface he/she just cough all over..your child can kill me. Plain and simple. Something like that will send my compromised immune system into a tail spin. It will cause my own body to attack itself, causing my organs to shut down.  

Those who choose not to immunize are putting us all at high risk.  There are apparently some Dr.'s who are now asking patients who do not immunize to leave their practice, I for one don't blame them.  The Dr's code is first and foremost to "do no harm', if they condone these patients who don't immunize, then they are in fact doing harm,, to the general population as a whole. And I stand behind their decision to dismiss those patients 100%.

The scientific proof that vaccines/immunizations are helpful and safe outweigh the twisted information that is going around facebook and in personal blogs.  Please do your research and keep us all safe.