Happy Thanksgiving!!

I sit here on this eve of Thanksgiving watching a marathon of Christmas light decorating on TLC. Not sure really where to go with this post. It may be one of those posts that is all over the place.

School started in August, and things really did not improve with Nick. He was still sleeping in class, and just not being his usual self. I also started back to school and things were busy around here.

At this point Nick was engaging in SIB sometimes over 100 times a day, not only was he sleeping in class, but would also sleep for 3-4hrs once he got home. He would just come right off the bus and go straight to the living room to lay down. Not even wanting a snack or drink.

In August, we also saw a specialist about one of his testicles being bigger than the other. She concluded that it was a hydrocele. We were scheduled for surgery Oct 2nd.

We made it through September, seeming to get used to this "new normal", but not liking it at all. This is a kid who was no longer participating much either in school or in life really. It was sad. A lot of the time his aide would come and Nick would be passed out, so we would have to re-schedule his hours. He started moving his hours to later in the evening when there would be a greater chance of Nick being awake.

Oct 1st I attended a meeting at Nick's school. This was unlike all of our previous meetings. We had people from the school district there, I brought our case worker and another mental health person, and some other people that I am sure I am forgetting. This was a meeting to talk about what to do. His school had done all the assessments they could think to do, he "failed" all of them. Meaning, they could not find any consistency in his behaviors. Hospitalization was talked about, but we wanted to wait until after he had his surgery to see if things improved. I think I cried all the way down Peach St. that day. No one wants to make this decision.

Oct 2nd comes and we take him in for the surgery. All goes well, but the doctor did tell us there was more involved than we all thought. She took care of the hydrocele, and while he was there, she went ahead and did a more thorough exam, since he was under anesthesia and not moving around constantly. She discovered he also had some penile adhesions, so those were also taken care of. Little guy was a trooper as always. We gave it a week or so to heal up and see what we were dealing with behavior wise after that. At the next meeting though, we put in the referral for him to go inpatient. But, also at that meeting, we decided to try one last medication. Since a lot of his symptoms also fit with depression, and we all thought that was a possibility, we tried Remeron. It was the last hope really.

I was at his school on Oct 31st. He had been on the new med for about 2 weeks. And suddenly it seemed he was making a nice turn around!! Everyone was excited to see the old Nick coming back!! He was participating!! Even initiating!! He was happy! They told me they were wanting to try getting him back to where he was before with things like playing, and doing tasks. Did I mention that he had also been declining 'academically'? Not making forward progress on his IEP goals? He was doing so good, that this was discussed and I was so happy. It seemed we finally had our boy back! While I was there, the inpatient unit called to say they had a bed available and ask if we wanted it. Everyone was so impressed with his dramatic progress that we ended up declining the bed. Unfortunately, in true Nick fashion, this was short lived.

So, here we are now, November 27th. He has been sleeping in school again, twitching, jerking, sudden aggression, etc. It is all back. We put in another referral for inpatient about 2 weeks ago, and it is just a matter of time now. Going from how long it was last time between the referral and getting the call, it should be the end of next week before we hear anything. The timing would actually work out for one. My semester is coming to an end, and would have more time to visit and attend meetings.

In other news, he had a great Halloween!!! The best yet really! He dressed up as a vampire and we took him out trick or treating. He stayed out for an entire hour!! It was wonderful!!!
Excuse the grainy Ipad photo.

I am also now part of a non-profit group in our town for autism support. We are just getting it started and have only had one meeting so far, but have another one planned for this weekend. Made new friends definitely. Can't wait to see where the group goes from here! Registered for next semester and slowly accomplishing all my required credits. I have discovered that I really enjoy working with the kiddos in Nick's school :) Well, that is pretty much everything that has been going on since I last wrote. Michael is in full teenager mode. 15 and moody. Trying to get him interested in something career wise. He has inquired to several colleges, and has expressed an interest in public health, so we will see. He was going through his own troubles earlier this semester, but with counseling he seems to be doing better. Hopefully things slow down next year?? I know I say that every year, but somehow we never get there. One day.

Just want to wish everyone a Happy Thanksgiving! Hope you and yours have a wonderful day tomorrow (or today? since it is after midnight here now). I better get to bed, mister wakes up early! Good night!!

End of a semester.....

I apologize for my lack of blogging lately! I had thought of doing an update several times, but it seemed that something else always got in the way. By the time I was done with whatever it was, all I wanted to do was relax and go to bed :). Today was my last final exam for the semester and I am ready for a bit of a break. I think I have all B's in my classes but I won't know for a couple more days yet. It has been crazy around here I tell ya! So let's see, what have we done since the last update?

We had hurricane Sandy make her way to us. We are in NW PA, so we did not get as much of a hit as the coast did, but we still had a lot of wind and rain from it. The kids were only out of school for one day-that alone was enough to drive anyone crazy. Nick was all out of sorts :(  It looked like Halloween would get rained out, but we were able to get up and down the street once before it got really bad. I only took Nick out this year, Michael said he did not want to go, or even hand out candy-which was fine, because money was tight anyway. Nick managed to say "Trick or Treat" and "Thank you" after some prompting and he seemed to have a good time. We filled up his little bucket he got from one of his happy meals at McD's, and then went home. He was dressed in a Robinhood costume :)

When we got home, I actually let him devour most of his candy. We don't keep candy around these parts and it was even easier to do without it since Nick never asks for candy anyway. But, with a little (Ok, A LOT) of prompting, and maybe even a little bribery with applesauce, he enjoyed chocolate after he got the first taste of it. He was very leery of the M&M's, but after a couple of those he seemed to like them as well. Not as much as the mini Hershey bars (Which I had to break into even smaller bits for him), but he ate them.

We had to get new tires for the Jeep. We were going to wait a while longer until we had the cash, but the whole Sandy thing possibly being a snow event for us (it wasn't), made us think we should go ahead and get winter tires. I am glad we did, because it seemed right after Sandy we started getting the first snowflakes falling, as well as more rain. Our tires were nearly bald and traction on them was not so good, even for normal driving. We noticed the difference immediately and actually spent the first time driving on them remarking on how the Jeep definitely stopped better :) and you felt like you were actually still on the road! Simple things like that amuse us.

The boys have been doing well in school. Michael has told me that he is on the honor roll. I have not seen his report card yet, but he informed me the other day they had an ice cream social for all the kids on the honor roll, and he was one of them! Nick is doing, well, okay it seems. The school called us last week saying that they would like to increase his meds because they are seeing more self injury and aggression. I have a meeting with them on the 28th to discuss things further. I know on his daily reports there is usually not a day that goes by where he has not been aggressive at some point. Today, he apparently had more than one instance of aggression and self injury. :( It is just one thing I hate about his autism. Nick has also been sick for about a week or so now. All the boys in my house are. Michael was sent home Monday with a fever and aches. He stayed home yesterday, and went back to school today. I knew he was really sick when he came home on Monday and literally slept all afternoon and all evening. :( He is not one to do that at all. Nick has just had some sinus crap going on for the most part. He was miserable all weekend, and finally seems to be on the mend. I went out and bought a nose syringe (one that is used on infants) because Nick has not yet learned how to blow his nose on tissue. He will blow it anytime without tissue and wipe off whatever comes out onto his face, or any furniture nearby. ugh. His hangar obsession continues with full force. On top of all that, I am not sure if I mentioned the fact that my husband injured his back at work way back in June, but we are still dealing with it! He was released from therapy because they could not do anything more for him. He can only work 15 hours per week, cannot lift anything over 15lbs, and has had quite a few set backs in his recovery. Just when he starts to feel better, he starts having severe muscle spasms that have sent him to his knees. He has had several shots in his back, and they work for a few days it seems, but then stop. He is hoping that his back will eventually recover fully, but I am starting to have doubts that it ever will. Of course this has placed much of the child care/and house chores onto me. He helps when he can, but often it falls to me. Michael is a big help and pitches in quite a bit sometimes with caring for Nick while I run an errand or am busy with homework. Homework of course I try to do as much as possible when the kids are at school or in bed. But it does not always work that way when I have had to study for finals over the weekend. Stress has gotten the better of me at some points, and I am not too happy about that. I can control it most of the time, but on days like when Nick decides to rip up our carpet on the stairs (staples and all!), gets poop everywhere, pees through several outfits a day, and has numerous metldowns all in one day (sometimes even all in one hour!) things start to just unravel and my sanity starts going out the window. Some days I wonder why I decided to go back to school as it seems that has done nothing but ADD to my stress level, but then I have to think of the big picture and just press on. This IS what I want to do!

And after months of putting it off due to tight finances, hubby and I finally sprung for an elliptical machine!! I am so excited! I have worked out on these things for YEARS in a gym, and now I will have one of my very own! And since it is hard for me to actually GET to a gym with everything going on, I can take an hour out of my own time and workout at home. I am able to think clearer when I exercise, and literally just slow my mind down and think about things more in depth instead of just frantically racing around. I need to lose some weight so I can keep up with Nick if nothing else. Who has time for a gym when you are going to school, caring for your family, and chasing an autistic 8yr old?? By the time I am done with everything I just want to fall in bed and go to sleep!

That is pretty much all that has gone on in the last month. Just trying to keep my sanity intact daily. I hope everyone has a wonderful Thanksgiving!

First signs of winter!

Nick loves his new Angry Birds winter jammies :)