I had a terrible night. Cough, toss, turn..cough,toss, turn. Then I would have to get up and go pee because I was so afraid that the violent coughing would make me pee the bed. It seemed when I looked at the time on my watch it was only an hour later than the time before. Ugh!
My chest is heavy and the darn humidity in the air is making it twice as bad. I pulled out my puffer this morning and am going to give it a go today and see if it helps any.
My energy level is that of a slug.. and I have so much to do! I sit here blogging when really I should be in the shower washing off some stink. I hope I can find some energy to go do that because I have to go out this afternoon to take JJ to go see his father and give him his BD present. I guess Mindy and I won't get out for a walk today either. First day all week it hasn't rained and I'm too sick to go.:( Probably just as well, my knees are killing me today, I'm sure its just my body reacting to whatever virus is attacking me right now. But it sure slows me up. I am keeping my fingers crossed that I don't have the bug going around that is causing so many people to get pneumonia, thats all I would need!
JJ is amusing himself right now listening to music on the computer and playing a game. He got up at 7am and I asked him to please go back to bed until it was light outside. He didn't go back to sleep but watched tv very quietly. He actually let me sleep until 9am. I was so grateful. Getting to sleep in past 7 on a weekend is very,very,very, rare. Did I say how rare it was?
He asked to join karate this morning...out of the blue, no prior discussions. Kind of took me by surprise because we have tried to get him to join many things over the past 4yrs. He tried soccer for two days when he was 6 and he did Beavers(like boy scouts) for almost a full yr when he was 7. There was only 5 kids in the troop so that helped with his social phobia,and Papa and I had to sit on the side lines the first 9mths..lol but he wouldn't go back last year at all. No way, not doing it!!
So with all this info in the back of my mind, I ask why karate.. "well when you get your black belt don't you turn into a ninja" he asks. "No, thats just in movies" I replied.. "Oh", he said all disappointed. "I guess I don't want to join karate then" he stated as he walked away. Seems JJ wants to be a ninja all the time, not just for Halloween..lol He can be so funny sometimes it almost erases the fact that life is trying.
I live in time frames. Its like a moment is gone, on to the next one.. or an hour has gone by, a week. My life is sections, noticeable sections of time.
Some days I feel like I am holding my breath waiting for JJ to have a meltdown and when it doesn't happen its like I'm doing a happy dance inside my head. If you have a special needs child then you know exactly what I mean.
Sections of time that seem to float through the air and all of a sudden will get caught up in some sort of JJ crisis, some sort of "end of the world", my life sucks, OMG the computer froze up crisis. It doesn't take much to set him off. When I clean his room while he is at school I have to make sure everything is put back correctly or I am the worse Nannie in the world because I moved something out of place when I was dusting. If I make him the wrong kind of sandwich he won't eat it no matter how hungry he is and the crisis shows its ugly head once again.
I so try to advert these crisis's. I know that Aspie kids hate change, only like certain foods, get stuck on certain toys to the point that they won't even consider playing with anything else. JJ is like that to the max.
When he was 2 it was weeble wobbles and only them. He had to have them all with every building and accessory that went with them. Between the age of 2 & 3 we did manage to collect them all.
When he turned 4 it was dinosaurs. He knows every fact there is to know about dinosaurs, and would talk about nothing else. You had to show you were really interested in what he was telling you about them excessively or he would get mad at you. Between the ages 4& 5 with birthdays and Christmas and good behaviour times he had a huge collection of dinosaurs. Every shape and size, electronic and bendable, books and movies too. He sounded like a little professor when he talked about his dinosaurs.
At 6 he got the pokemon bug. Pokemon cards, toys, movies, game cube games, books, anything and everything pokemon. Again he would talk of nothing else, and knows all facts about each one. That lasted until he was 7 then he found lego. Not just any old cheap lego, Nooooo... its star wars lego. Last year we gathered up all his weebles, dinosaurs and pokemon toys and sold them on kijiji and he bought a Wii with the money. The first game he bought for it,,was star wars lego, Go figure..
For the past 2yrs we have been on an endless quest to find the newest box of star wars lego. We set a price point for him early on and have never wavered on it or we would be in the poor house. The worse part about the lego is if a piece falls off a day later he doesn't put it back on, so he has a now has a tote bin full of star wars lego pieces. He does use them to make his own "space ships" or what ever, so its not a total loss.
He has never played with a dinky toy, dump truck, or played in a sand box like most little boys would do. I've tried over the years to show him how to play like that, but its of no interest to him at all.
I guess in a way we have gotten use to his obsessive toy compulsions. And when he was diagnosed at 6 of having aspergers an autism spectrum disorder (ASD) I did lots of reading up on the syndrome and found that it was perfectly normal for him to exclude certain foods, toys etc.
Trying to change this behaviour stresses them out to the point that they will have complete meltdowns. There really is nothing worse than a child having a meltdown that lasts sometimes for hours. As he gets older and with consistent parenting and some counselling, he has learned what is acceptable behaviour when he starts to stress out. We try to advert a crisis before it escalates by diverting his attention thus taking the focus off what is stressing him and making his brain switch gears and think about something else. The older he gets the better this method is working.
Its all a learning curve, for him and us. He needs more help but there is a 2 yr waiting list he is on to see the specialist. In the mean time I do lots of reading about different strategies to use and keep him in a routine and consistent. It keeps those sections of time flowing smoother.
Dealing with bed time is a nightmare. Every single night since the day he was born.
Just getting JJ to go to bed, lay down, relax.. its a big deal. The first problem is the time he goes to bed. He wants it to be 9pm on week nights and 10 on weekends. We have fought for years about time, we always win, but the fighting is stressful.
This past year I came up with the idea of changing all the clocks in the house back an hour. I did this because if I say its bed time and the clock says 9pm its really only 8pm and then he can get a half decent nights sleep. Its worked pretty well so far, except when he asks me what time it is and I look at my watch.. then I forget and tell him the real time. UGH!
The good news is he has no real concept of time, so half hour later I can correct myself and he doesn't argue with me.
Of course anyone who came into the house when I first did the "clock change" I had to whisper and tell them not to pay attention to the time on our clocks..lol
I mentioned to the dr. the last time I had JJ in, that getting him to settle down at night was a horrible experience. He suggested that we purchase some melatonin at our health food store. Its a natural substance found in the brain normally but in children with ASD its found that they have lower than normal amounts of melatonin. Its a 3mg pill that he could swallow or let it melt in his mouth with no taste to put him off.
I have to say, I have fought not to have JJ on any meds. Sometimes you just have to listen to the experts. It has made a big difference for us and for JJ. That tiny little pill has brought nightmare bed time to a much more deal-able level. It lets his hyper mind calm down and about 30 minutes after he takes it, he is ready to go to sleep. Less arguing, fighting and meltdowns.
Sometimes it has to be used for a long period of time, sometimes the melatonin can just help regulate sleep time and can be stopped after 6mths. I am hoping the later works, but for now he is getting the rest he and his brain needs to function in school and deal with life in general.
It started yesterday, that tickle at the back of your throat.. the one that makes you cough every time you breath. You know the one, it's so irritating that after a while you get a headache.. mind you its not a constant headache, its a pounding every time you cough. I bet you've had a tickle cough like the one I have described. Well I have it, coughed all night as a matter of fact and this morning I feel like someone has put a hot poker in my lungs.
I know what I'm in for.
JJ's been sick for the past 3 weeks, he got sick the third day of school actually and it hasn't let up since. Can you imagine, only back to school 3 days and he gets sick. Don't they disinfect the desks over the summer holidays? Last school year he was sick constantly, seemed like he would just get over one cold or virus and bam he gets hit with another one. Of course he would spread it on to me, and since my immune system is already compromised I would get three times sicker than the average person. I really hope that this year we aren't sick all school year again!
Now I'm going to go have a nice cup of Oolong tea and cuddle up in a blanket.
I was so mistaken when I thought today was going to be a good day.. JJ got up early, got dressed without me telling him to and was looking for breakfast by the time I got up at 6:45am. I thought, well this is a nice start to the day for a change.. I was wrong though.
After cooking him his favorite , an english muffin with cheese and egg, he then got so defiant with me and didn't want to go brush his teeth and hair. So once again the morning struggle was on! The incisive talking back, not wanting to do what he is told, getting so angry and then hitting things, or slamming doors or saying "I hate you" it just wears me down. When I pushed him to go do it, he says "I'm going to call social services on you" ! Like where does that come from. He is only 9 what does he know about social services? Do 9yr olds talk about this stuff at school? I tell him that social services won't help him, he is disobeying a parent and has to do as he is told... it gets me no where, but its the same conversation every time a zillion times a day. Since Asperger kids can have other disorders like OCD, ADD, ADHD, I have been doing a lot of internet searching and personally I think he has whats called "oppositional difiant disorder". Here is a list of characteristic behaviors seen in Oppositional Defiant Disorder children. They include:
•Getting angry easily
•Arguing and talking back to adults
•Defying reasonable requests
•Bucking rules
•Intentionally bothering people
•Pushing their limits
•Not taking responsibility for their mistakes or misbehavior
•Getting easily annoyed
•Getting angry easily
•Being resentful, spiteful, or vindictive.
•Speaking harshly
•Being brutally unkind when upset
•Seeking revenge
•Having frequent temper tantrums
Parents of ODD children usually describe their children as being rigid and demanding, even from an early age.
I have to tell you that having Aspergers is quite enough but JJ has every single one of these symptoms since he was just a toddler. Believe me when I say it is so hard to deal with day in and day out. I can honestly say that there has never,ever been one day where things have gone smoothly. NOT ONE!! Every time he talks back and refuses to do something, I be consistant (which we were told would work) and I take something away that he likes, like his lego stuff, his DS, or time on the computer playing games. But nothing works, he still doesn't change. I have been battling this for 7 yrs, seven long, long years... and then you top off those actions with lack of eye contact, not being able to read my facial expressions, getting stressed out easily and repeating things over and over and then having meltdowns... oh my....
I called his dr. yesterday to follow up on a referral he was going to make for JJ in regards to his bowel problems and which I still hadn't gotten a call about another appointment... I was told there was a two yr waiting list... two years!!!! He will be 11 by then and I will probably have major problems by then!! What kind of help is that??? Seriously.... why does this city only have one developmental psychologist? I am so down in the dumps..
