Summer!

A lot has happened since our last update, so I will try to go over it all. In April we found out that Michael needed glasses as the poor kid was having trouble seeing things from a distance. He ended up getting bi-focals! Bi-focals! For my teenager! I never would have thought that he would need those so soon. Basically they are just so that he would not be forced to take his glasses on and off all the time since he does not need them to do things like reading. So, around mid-April he started wearing them, and I must say, he does look good with them :)
Around this time Nick continued to go downhill. He was having more jerky movements that no one seemed to be able to figure out what they were. I sent in a video of him one day to his school psychiatrist who had put him on depakote since his crash in January. He then told me that this was out of his realm of expertise and recommended we get a consult with a neurologist at the children's hospital 2 hours south of us. I called his pediatrician and she made the referral. We had our consultation on May 2nd. Great!

On the evening of May 1st we were preparing to celebrate Michael's 14th Birthday. He had a soccer game that night, so I had taken the night off of school and after his game we were going to have a little celebration. We had planned to take him to the store and let him pick out his birthday gift and then get something to eat. We had bought a cake earlier in the day and had saved that for after dinner that evening. Well, needless to say things did not go as planned. During the second half of his game, Michael fell on his arm trying to block a shot on goal (he was goalie) and broke it in two places. He spent his birthday evening in the emergency room getting a cast from his wrist to just below his shoulder. We did not make it home until close to midnight. The next day we had to leave the house around 8am to make our 10:30 am consult.

The neurologist listened to all of our concerns and we went over what Nick was doing. His twitching, his jerking, his teeth grinding, etc. He examined Nick and asked us if he was that "out of it" all the time. This neurologist also specializes in autism, so he is familiar with kids like Nick. We told him that this was Nick in one of his "good moods". He diagnosed him with 'spells' (via what he saw in the office, and what video we showed him) and ordered a 24hr EEG, MRI, and increased his depakote to 500mg daily.

The time came for the 24hr EEG and we once again had to drive over 2 hours away. I stayed overnight with Nick, and Mike stayed home with Michael because he was still in school. Nick had one big jerk prior to them putting on the leads, and nothing during the actual EEG. After they took the leads off, he had another one. Once again, nothing was caught on EEG, and we were discharged with orders to let them know if things changed. Two weeks later, things started changing. I sent in another video of Nick having a 2 min long staring spell where he was unresponsive. The next day I get a call from the Dr's office saying that he had reviewed my video and did see seizure activity. He ordered another increase in depakote. We are now up to 750mg daily on depakote, and I have sent in two more videos since then. One of Nick having some violent jerks, and the other one of his not-so-violent jerks. The neurologist has recommended we now follow up with an epileptologist as he could not identify what is going on. We have good days and bad days. I have started keeping track of all of his 'events'. Since the start of June, I have tracked 24 of these. They last anywhere from a few seconds (his quick twitches and jerks), to 3 minutes (staring, odd mouth movements, fumbling with clothes). He also has times where his head will drop and he will grind his teeth, we have also seen eye rolling. They are always preceeded by aggression, and after he has several big jerks in a row he will remain on thecouch for quite a while, and some times act as if he has a headache (banging his head on the wall) and we will give him some motrin/or advil. Most of them happen in the early to mid morning, and once again in the evening if he is getting tired. His school is also seeing the same things and have sent me some videos as well. I plan on taking all of the videos we have, plus all of our notes to our follow up with the epileptologist in July. We have the MRI scheduled for this coming Friday. The neurologist has diagnosed him with seizures based on what he has seen so far with the staring episodes, but we have no idea of what these other movements are.

Michael had his 8th grade graduation on June 6th, and Nick's last day was June 11th. ESY starts on July 1st and runs for one month. We found a house and should be closing on it later on this month, and will be moving in around August 1st. I completed my freshman year of college on the honor roll and have set up my fall courses. We are spending our summer afternoons walking in the park, going swimming at the YMCA, and we are also in the process of setting up home supports for Nick. It has been a busy few months to say the least. Not expecting things to slow down any time soon either!

We have had some good developments though! Nick has started basic pretend play!! He of course likes us to indulge him in such things as pretending the ottoman is an elevator and rocket ship, and he will lead us to it and say things like "Ottoman is an elevator" or "do you wanna do the elevator?" and we will pretend those things with him. It has just been fun to do that with him. No matter how basic it is, it is huge for him! He is also giving me kisses now. He will lean in to the side of my face and press his lips against my cheek (open mouth of course...LOL). So it is not all bad news here :) Hope everyone is having a good summer vacation and enjoying time with their families. I will try not to let it be so long in between updates from now on; but I can't promise anything ;)

Long Overdue Update....

It has been a long time since my last update and I apologize! The kids are on spring break right now and the first few days really threw Nick for a loop. The past two days have been rather good, so I am taking the chance to update.

Two weeks after Nick started with the depakote he came down with a horrendous stomach bug. He could not keep anything down, and was having constant diarrhea. I at first thought his blood levels on the depakote might be high-since those symptoms are the same as flu type symptoms...talk about confusing. Anyway, I called the nurse hotline and they said to take him in. I was really not keen on spending my weekend at the hospital, but if that is what we had to do, then fine. They took his blood and his levels were a little high, but only because he was so dehydrated. We were told to stop the depakote for a couple of days, and they gave him medicine to stop his constant vomiting. We ended up back in the hospital about 24 hours later because he had constant diarrhea. He was one very sick boy.

Being off the depakote allowed us to see if it was working or not. And boy, did we. 24 hours off it and his tics were coming back with full force. Poor kiddo was too sick to really do anything else, so that was all we had to go by.

Now, he has been doing better and getting better reports from school. His self injury behaviors have drastically decreased, as well as his aggression! Which has been wonderful! However, he is still having these jerky movements. And now they are starting to involve his whole body. There is a pattern to them. He gets Aggressive and has to be restrained (not hard-he can still move, we are just laying on the couch with me holding his hands). He screams bloody murder, stops suddenly, then jerks. Not just once, but multiple times. Afterwards, he is usually subdued and will remain on the couch for a while. I sent in some video to a couple of doctors who say they don't look like seizures, but they cannot say what they are. They know it is not normal, but can't say any more than that. So, at the recommendation of his school psychiatrist, we are seeing a neurologist from the children's hospital on May 2nd. This will be our fourth time going for an EEG and I am going to push for a longer EEG if it is not offered. I am tired of not knowing. I am tired of everyone seeing these and saying "You are right, something IS going on, we see it too" only to have nothing show up.

But, he is having a good day today. Lots of words and happiness. I am enjoying every second of it. I hope everyone has a wonderful holiday this weekend!!

The Crash...and Depakote

It has not been an easy month here my blogger friends. On January 25th we were having a normal Friday afternoon. Nick came home from school as usual, and we all went to look at a house (because we are working on buying our own place!). Nick was just fine throughout this whole ordeal. About twenty or thirty minutes after we got home he simply crashed. He started having screaming, aggressive, and self injury fits. At first we think, Ok, we have been through this before, he just needs to calm down. He never calmed down. Three hours of screaming and hitting himself later we were taking him to the hospital.
Something must be wrong. But nothing was found.
We saw the psychologist there, and we thought this might be a reaction to his increase in risperdal a couple of weeks before. We thought it just might have taken that long to build up to an untolerable amount. Advice from the psych there was to decrease his amount slightly over the weekend, and talk with his regular psychiatrist on Monday. Ok. By this time, his melatonin had kicked in-as well as his evening dose of risperdal, and he was getting sleepy. Other possibilities were discussed, such as admitting him, but we are not 'going there' yet.
We were hopeful that this was just one of those One time events and that we would decrease his meds and everything would go back to normal. Well, here we are a full month later, and we are still not back to normal. That weekend he went through these episodes every 15-20 minutes. It got to the point where I was recording them on video because they seemed to develop a pattern. We got through the weekend (barely!) and first thing on Monday I was calling his specialists at school. By the end of the day, we had a prescription for Ativan. Nick was in no shape to go to school that day, so we took him out with us to pick up his new medicine, and eagerly gave him the first dose. While it did not stop these episodes, it did decrease their intensity to a more tolerable level. Lots of communication between all of his specialists in school and me went on during this week. I kept them in the loop of his episodes at home, and they did the same for me during school. Meetings were held to discuss his behaviors. Everyone noticed the drastic change in him. He went from having few aggressions and self injury through the day to having over 40 of them.
Just to get him ready for school takes two of us. He was no longer eating at the dining room table-but was being fed on the couch, we could not let our guard down. He started spiraling out of control. We were even to the point of having to take shifts since Nick would wake up in the middle of the night screaming as well.
His risperdal was once again increased to the normally maximum therapeutic dose of 3mg 10 days later, and we were still on the Ativan. We were told to try that for one week to see if it helps. We were also instructed to start sending some Ativan to school so he can have a dose at lunch time. This was due to the fact that once his morning dose wore off, he went out of control again. Emotionally, physically, and behaviorally he was a complete wreck. He has/had scratches up and down his legs from his toenails digging into them, bumps and bruises on his forehead from the head banging, and he was biting the inside of his mouth all up. He looked a hot mess.
But so did we.
This has taken a mental toll on us as well.
We don't sleep very well. We get short with one another. We are stressed beyond belief. Three weeks of a behavioral crisis have aged us about 5 years. I spent my birthday restraining my son from hurting himself as well as others. Not to mention all the other days since then we have had to restrain him. After not seeing any change in him with the risperdal increase, and honestly, I am not even sure the Ativan is doing much anymore, we were given a prescription of Depakote. He has been on that since Wednesday. Things have gotten slightly better. For instance, he is sleeping at night! (so far!) He is still having some episodes throughout the day, but not as many. But, this is only day 2. I am not getting my hopes up yet.
Right now his med sheet is:
1.5mg risperdal in the a.m. when he gets up
.25mg ativan at the same time.
.25mg ativan at noon.
1.5mg risperdal before dinner
250mg depakote before bed.

And we still do not know exactly what these episodes are. Last Saturday when his psychologist made a visit, he saw one from start to finish. It started with aggressions and screaming. Then, Nick was zoned out for about 20 minutes. No response from him at all. His eyes were glazed over, and he was just staring.During this time he had a lot of facial tics. Last night, he had one that started in the bath. Screaming and aggression. I restrained him on his bed. He was alternating from screaming bloody murder to complete calmness. Then, his whole body jerked. This happened a couple of times and always in this pattern. He has had three EEG's that have shown nothing, but we are still dealing with these things.
But, that is where we are now. I can only hope that things start improving. We shall see.

Holidays and more.....

This semester of school started out quite a bit rocky. Nick ended up getting sick during like my second week of classes, causing me to miss a day because he had to stay home. Then, the very next week I was late to a class because as I was getting ready to walk out the door, the phone rang and it was the neurologist. They were calling to get some information from me regarding Nicks 'episode' at school on the 5th of December.

On the 5th of December, I was all set doing my homework and then the phone rang. It was the school nurse stating that she had seen what looked like seizure activity in Nick. He started having a meltdown, and it escalated from there. He had to be taken out of his classroom and restrained by three people in a chair. One of them was his aide, one of them was the school nurse, and one of them I think was his OT. They had another person capture it on video, and it was pretty disturbing. Once he was in a meltdown, his self injury started taking place and he bit up the inside of his mouth so much that blood was dripping out of it. He was screaming, shaking, and biting. It was horrible to watch, as they gave me the video. We were seeing the same things at home, and finally, now someone was seeing them at school. His next team meeting was shortly after that, and another neuro consult was put in.

Literally the following week Nick caught the damn flu, once again, on my school day, and Mike had to work that day. So, once again, I missed another class. Well, of course Nick was kind enough to share his flu bug with the rest of us, and we proceeded to drop like flies. It went through three of us....I am still not sure how Michael managed to escape the puke fest, but he got lucky. It was awful! I have never felt like such crapola in my life. Of course, now I ended up missing another class because I was sick. REALLY?? So, on the 21st of December, we went to the neurologist for another EEG done on Nick. This one was sleep deprived. So, we had to keep Nick up most of the night Thursday night-he was only allowed four hours of sleep. I don't think the kid ever wanted to sleep so badly in his life. At 8 am we were on our way to the neuro. He actually let them hook all the leads up and we got through the entire 45 min test with no meltdowns!! He did have a couple of his little episodes, but no seizure activity....of course. We get back to the house around 10am, and get some glorious sleep in. We needed it. Why? Because we also had a hockey game to go to that night in Jamestown-in the middle of a snow storm. This is what the road looked like on our way back.....

What is normally about a 45 minute drive took us 2 hours. Saw a few cars in the ditch, glad we were not one of them! Anyway, Christmas was good. The boys got a lot of good stuff. Nick's favorite toy is a toy microwave :) He must have played with that thing for three straight days. I believe he even slept with it a couple times. Now, it sits atop his dresser awaiting for the next obsessive moments! We had a decent break, although we all got one hell of a cold. Nick is still dealing with it. It is always awful when he gets a cold....it takes him forever to get over it, and then it has usually morphed into some sort of sinus condition....like it did this time. The last couple of months we were also dealing with some major self injury/aggression issues with Nick. His psychologist increased his dose of risperidal to 2.5mg a day. We are on the first week of the increase and so far, so good. I have e-mailed his teacher to make sure they are aware of any possible side effects from it. So far, his tics seem to have diminished, and no aggressive or self injurious behaviors for the past few days. I have caught up on my school work from both being absent, and the holiday break. Just have a few more weeks to go in this semester and then it is on to the next.

Temperatures today were unreal! It was 61 degrees here today! I think Nick was happy to see the snow and ice had melted! He wanted to spend the day outside. So when I got home from my class today, I took him for a trip to Wal-mart :) He was soooo good during our trip, I got him a toy. He had the biggest smile on his face. That is what makes it all worth it. When he is happy, it is like the best thing in the world for me. I love to see him smile! :) Monday we go back to winter reality with temperatures in the 30's and more snow by the end of the week. So, we are enjoying this little taste of spring for the next 24 hours. Here are some pictures taken over the holidays.

Nick in his hoodie from his Nana!

Both my boys playing with their Christmas presents!

Stuffing his face with cake..LOL

And making a marvelous mess! :)

A short walk in the snow. Literally. As in it took longer to get him dressed for this.

The babysitter! He loves watching the rotisserie spin!

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 :)

Fall is Here!!

Where do I begin with an update? This semester is quickly coming to an end for me, and I now have to think about what classes to take next term. So far I believe I have an A, and two B's in my classes :) My Research and Writing class has been by far the most challenging-mostly due to the instructor and lack of communication. I think I want to keep my Mon-Wed-Fri schedule, as that seems to work really well for me.

Nick has been Nick. We were in a fairly stable period behavior wise, and then he caught a little bit of something earlier this week that brought on aggression and Self Injury. Began giving him some cold medicine and nose sprays, and it seemed to go away without getting too serious, and by Thursday he was back to normal. We all had a wonderful day yesterday! Michael had his first hockey game of the season, so we spent the afternoon at the rink, and Nick made it all the way through with no meltdowns! We then went and got an early dinner from KFC-which everyone enjoyed. It was an all around good autism day :) One thing we have now noticed is that Nick still has sleep problems on the weekends. Usually on Saturday nights/early Sunday morning he will wake up sometimes around 3-4am and I am constantly having to tell him to go back to bed. He did this today, and as a result, he is fairly tired by the afternoon-early evening. He starts spending more time up in his room laying on his bed. He simply cannot take a nap though. Not that I would not like him to, I would, but his brain does not let him just 'relax'. He starts asking for "time for night night" on these days around 4-5pm. Today, he has been clearly tired and edgy this afternoon, but we have managed to hold it together behavior wise. If we can make it through dinner, we are in the home stretch.

Fall is here, and we have been enjoying the cooler temperatures! The trees are getting richer in color by the day, and before it was all said and done, last week Nick and I took advantage of a crisp fall day to admire the fall colors!

Nick has started to do something that we have thought is rather funny. He will go into Michael's part of the dresser and put on his clothes! He knows these are not his clothes, and it is just so funny to see him come downstairs in baggy pants and shirts! If we try to change him into his clothes, he puts up a protest! Nick has noticed that when Michael gets home from school-he changes out of his school clothes. So, now, Nick wants to do the same thing. When Nick gets home he wants to be put in pajamas or other clothes. It is hilarious actually. He wants to be like his big brother, and is doing things that maybe a toddler might do :)

Michael had another growth check up last Monday. It was not something I was looking forward to since both the boys were out of school, and Mike had to work. So, I was nervous about having to take Nick to an appointment that was A) not fun, and B) not even for him. Thank the Lord Nick was in a good mood, and we had no problems! The Dr measured Michael and he is 4'8" tall and 99lbs. He was not satisfied with this amount of growth, so he prescribed an oral medication and increased his growth hormone injection to 2.7mg from 2.2mg. We have been on the oral pill for one week, and so far no side effects...which I am happy about. We shall see what this does for him at our next check in Jan.

Michael also tested for his orange belt in Hapkido! He was also one of the select few from his eighth  grade class to sail on the Brig Niagara for one afternoon during school!  Have no idea what our plans are for Halloween yet, but hopefully it will not be ruined by meltdowns. Despite some bumps in the road, we have been on a rather good streak and would like to continue this way. Hope everyone has a good rest of the weekend and a great week! Happy Fall!! :)

It Hits Like a Ton of Bricks.....

Things had been going along really well for the last two weeks or so. We were settling into our new normal routine. I was finding the right balance with my school work, and house work; and so were the kids. Things were going in the right direction. Then Monday came, and WHAMMO! We were thrust back into the horrible world of self injury and aggression. Nick came home from school with two huge bruises on his thighs. I looked in his backpack for the daily report to see what had happened. No Report. Damn! His aide must have been out. He was fine the rest of the afternoon, so I had hopes that Tuesday would go better. Tuesday morning he was in a great mood. In fact, he has been in a great mood nearly every morning since school started. That gives me such peace. That no matter how his day seems to go, he is always happy to GO to school--that was not the case at his previous school. He came home Tuesday and the bruises on his legs were worse than they were the day prior. What the Hell??!! And again, no note to say what happened. That evening something made Nick very mad and he attacked me. Days like this hit like a ton of bricks when we have had so many good days in a row. It is like a swift punch in the gut when you least expect it. A reminder, that once again, Autism is in charge and we merely try to control the damage.

So yesterday after school, I sent an e-mail to Nicks behavioral specialist at the school. We need help. He is getting too big and too strong for me to control when he gets like this. I am just trying to defend myself against his smacks, kicks, head butts, etc. I restrain him, but that just seems to anger him more, and then he starts biting himself because he cannot do anything else. So, he is screaming, kicking, and now bleeding, while I am trying to hold him in an attempt to prevent him from smacking his head-either with his hands, or smacking it into the bed frame, and wondering why the F*ck my child has to go through this?! Anyway, the e-mail has been making the rounds through his behavioral specialist, mental health specialist, psychologist, and his teacher. We might need to look at different medications, I asked them if they could maybe show me how they handle his aggressions so we could do the same at home, we just need help. He had 68 incidences of Self injury on Monday. 68!!!! I can't stand to see him like this. Why does he hurt himself??!! And these are not pain related. It may sound absurd, but just like a baby has different cries, Nick has different meltdowns. There is a difference between them.  Yesterday was a good day. He had zero incidences of self injury, and no meltdowns....either at school or home. I was relieved to hear that he had a good day, but I still want to see if we can get this under control before he does something in a rage that ends up being a serious injury. (and just for reference, he has ripped drawers off a dresser and thrown them in one of his rages). There will be a team meeting next week to discuss what can be done. I will let you all know what comes of the meeting.

In other news, we are now getting Nick's diapers covered by Medicaid! That will save us some cash. We finally resigned ourselves to using this service since potty training still seems too far away. We will never give up trying, but until then, he will get free diapers. We have bigger issues to concentrate on now; but still practice with making him sit on the potty. Small steps....

Spending my Time....

The first week of school has come and gone. Nick had a bit of a rough afternoon the first day on the bus, and after doing some brainstorming between myself, the bus driver, and the aide on the bus, we decided that the straps on his car seat might have been too tight. The second day they were loosened, and he has been happy ever since.

And as for how I am spending MY time while they are at school? I am back in school myself! I am pursuing my degree in early childhood ed. and am enrolled as a full time student. I am taking three classes Mon-Wed-Fri-Sat. Between homework, school, housework, kids, sports, and errands, there is not much time left. But I am enjoying it.

Michael is doing well in school so far. He comes home everyday and does his homework without being nagged. That's a huge step for him! Not much to post really. Life is good. We are back on a structured schedule, and Nick is thriving. Can't get much better than this.

Back to School!!

Nick was all smiles this morning as I told him he was going to ride the bus to school today. Looking forward to another whole year of progress! I have so much more high hopes going into this school year than the last one. He has changed so much for the better since going to his current school. True, he did regress a tad over the three week break from his summer school, but he should be able to pick all that back up fairly quickly. This year, we have everything in place. This year, he will get to use the swimming pool at school for physical therapy-which I know he will LOVE. This year I have also signed him up for the Special Olympics. It is going to be a good year, I can feel it!

Now that I have both the boys off to school, I am now faced with what to do with my time?! Any suggestions?

Ok, So Today was not my proudest mommy day...

I thought I had the school orientation schedule all figured out today. In my mind, since both of them were on the same day and just hours from each other, it somehow got in my brain that Nick's was from 1-3pm, and Michael's was from 3-6pm. We were all prepared to leave the house around 1:30 and go to Nick's school. And when I say 'ready', I mean we were just about to walk out the door. In fact, Nick was already standing at the door. I looked again at the paper we got in the mail. "Teacher Meet and Greet from 3-6pm". WHAT?! How the eff did I mess that one up??!!Great! Not leaving when Nick was all ready to go and expecting to leave is not a good thing. Anxiety creeps up because we are suddenly not going somewhere. I had to think of a 'filler'. Somewhere to go with Nick while we waited. Autism parents will know this task very well. I came up with one that I knew would work well. Going to get some lunch from McD's. Nick LOVES Chicken Nuggets and French Fries. Hubby, sensing my frantic desperation to fill in some time due to my own mistake, did not even object. I said "Fuck it, let's go to McD's!" Now, I can recite Romeo and Juliet, or even Moby Dick, and Nick will not utter a single word. But the second I say a cuss word, he picks right up on it and says it. So, Nick said "fuck it". Not my proudest mommy moment, but at least he was using words appropriately right??! This is sadly, not the first time Nicky boy has dropped the F bomb. The day was saved by a few chicken nuggets. Hey, a mom's gotta do what a mom's gotta do. We have since printed out a calendar and hung it up where a certain eight year old cannot reach it and rip it to shreds. I gotta give myself a little credit though....I have managed to keep everything straight for about 4-5 months now! One slip up is not too shabby!

Summer is Winding Down......

Summer vacation is winding down for both the kiddos. We are in preparation mode for the next school year. Packets of paperwork are filing in from both of their schools. Tomorrow we will be out school shopping, much to Michael's dismay. We need to get proper school attire for Michael as his school has a dress code. I need to call one of the team members that works with Nick tomorrow to provide them with some insurance information. We have school orientation for both of them on the 23rd. Nick will have the same teacher as last year, but Michael will have all new ones.

We have been trying to enjoy the last few days of summer vacation; however autism does not take a vacation. Nick has good days that are really good, and bad days that are really bad. Sleep is sometimes hard to come by. He is sometimes up at 4am, and sometimes he sleeps until 8am...you never know exactly which day will be what. But, yesterday was a good day. So, we went on a little walkabout at a local park. Which he and I both enjoyed.

Today, we had an appointment this morning with a dermatologist. The first thing she noticed about him was his big blue eyes and long eyelashes. Nick was being quite cooperative and charming (as in he did not destroy her office or break any picture frames!) I think we got the hang of this, him and I. I may look like one of those "helicopter parents" from a distance, but unless you want your things destroyed, I do what I gotta do. We walked out of there with three more prescriptions. A special shampoo to use everyday (to get rid of what I can affectionately call "reptile skin" on his head), a spray to use in conjunction with the shampoo, and then a cream to use on his elbows. After that, we had to go to the grocery store to get a few things. Nick is getting better about handling these outings. He will even push the cart  and help put items in. It makes me happy to think that he is developing some coping skills needed to do these things.

I imagine that the  picture on the left kind of sums up what our world can look like to him at times. He is in focus, but the rest of his surroundings are nothing but a blur. With him feeling the chaos and out of control. Then other times, it is peaceful and serene, like the picture on the right.

And when we get the balance just right, we have moments like the one above. We had all of those on one walk in the woods.

Dairy Free....

We saw an ENT/Allergist on Thursday with Nick. The kid has some issues that we would like to get to the bottom of. For one, his seemingly non-stop craving for milk and yogurt. Milk was the only drink he ever asked for; even though he clearly knew the words/PECS for juice. I was buying 3-4 gallons of milk every week, most of that going to Nick. He could also do the same with yogurt. He would eat an entire 6 pack in one sitting. I have even caught him sneaking into the fridge to get yogurt at times. Two, he has started to have some sinus and congestion problems. We also began to suspect that he was having headaches and stomach aches. The doc took us in, looked in his ears, nose, and throat, and said everything checked out there. We talked more about his meltdowns, possible headaches, stomach aches, sinus problems etc. He is willing to do some allergy testing on Nick (blood tests) after we try removing dairy from his diet first. If we see no change in him in two weeks, he told us to call and they will get him tested.

So, we have been without dairy now for three days. It's hard to say whether it has helped, since it has only been three days, but I do believe he is going through some withdrawals. Thursday evening was simply awful. He had numerous meltdowns and his legs even started shaking. Mike was wanting to quit right then and there and give him some yogurt, but I said no. He had applesauce instead. Friday was better. I informed his school that he was not to have dairy, and sent in some juice and snacks for him. Instead of getting morning yogurt with his medicine, I gave him oatmeal. He went to school and had a decent day. A couple of meltdowns with aggression, but overall it was decent. Today, has been somewhat decent. He had a major meltdown around 10am that lasted for 15-20 min. Complete with self injury, aggression, and screaming. Then around 4pm he had some dry heaves before he vomited up some of his hot dogs he had for lunch. I think it might be the orange juice. It might be too acidic for him, so I guess I am just going to have to watch out for that. His strep throat has cleared up, and he does not sound very congested anymore so that is good. We have a couple more days left of the amoxicillin and then I can quit that. We hope that he stays well for a nice period of time! We could all use a break from seeing so much of the doctor and pharmacist!

STREP!!!

This week Nick started to have more meltdowns than he has had in a long time. They started getting fairly severe with lots of aggression and self injury. We have learned that these type of meltdowns are only caused by pain. We started with the flonase for three days. Then, after my meeting with his team at school I bought saline spray and zyrtec. We also had Claritin at home. I started with the nose sprays and Claritin, as well as Advil for pain. He was waking up every morning in a meltdown. I started taking notes of everything he did, ate, how long his meltdowns were, and what he did during them. Thursday at school he had 25 aggressions towards staff, and FORTY times he engaged in SIB.

The bruise he gave himself from smacking his leg with his hands.

By Friday, we had three appointments set up. I spent most of Friday morning on the phone with various people. I called his pediatrician first thing Friday morning and described what had been going on. We were able to get an appointment Friday afternoon! Of course, with Nick, that is a fiasco in and of itself. We had to be there at 3:15pm. We did not get seen until 3:30pm. It takes two of us to even go to the appointment with him. One to sign him in, and the other to stand guard over Nick. He still managed to get away from dad and nearly knock down one of the pictures in the waiting room. Then as hubby was putting up that picture, Nick ran off and was knocking down a heavier picture. I managed to save it, but as I was doing that, he started running down the hall. After nearly destroying the waiting room in one fell swoop, we had to wait to be seen. With Nick, waiting for long periods is not easy. Mike went up and talked to the receptionist about waiting in one of the exam rooms, which proved to be far better for ALL involved. To make a long story short, the doctor was able to do a throat culture (although it took FOUR of us to hold him down) and it came up positive for strep throat. UGH. Nick is once again put on Amoxicillin for ten days. Things today have not been much better. He has meltdowns at least every two-three hours as the Advil has worn off, even though it says "up to 8 hours". He is still congested in his sinuses, although they are not infected. During those meltdowns he has to be restrained because 1) he will come after me and smack me repeatedly and 2) he will injure himself by banging his head on anything around (walls and his bed are popular). He has already given himself a big bruise on his forehead the other night. I certainly hope things are much better tomorrow.

Thursday we got to see an ENT and get Nick tested for allergies. Hopefully, that will provide us with more clues.

Happiness....

                                     One word says it all for this post...............................................

4th Of July

Firework Fun!

Nosey as to what is going on outside!

He loved watching them from a safe distance :)

We had a wonderful 4th of July! Despite Nick being a little troublemaker and getting into everything....which was driving me batty. He climbed into the pool with his clothes on (again), took every blanket out of the hall closet (again), and caused general mischief (again!) around the house. We cleaned off the grill, and fired it up for the first of hopefully, many summer dinners. I was not counting on Nick wanting to take part in the firework festivities, so I bought him his own things to celebrate the holiday with.

 

 

He quite enjoyed the red/white/blue glow bracelets

They look cool when you spin them!

Fun with sparklers!

Today it is back to school for Nick. He was a little tired since he stayed up last night, but still ran to the bus this morning :) He loves his school! Older guys are still sleeping, so for now my house is quiet. Going to enjoy that while it lasts LOL. Hope everyone had a wonderful 4th of July!

We Survived!!!!

Today marked the first day back at school for Nick. We have enjoyed the three week break,but it was time for him to go back. The first few days were fraught with more meltdowns than we had seen in the previous months, but after he got used to the more relaxed schedule, it was enjoyable.

 

 

 

 

We spent LOTS of time in the pool.

Sitting on the swing with either Mommy or Daddy

Watched Michael in his Hapkido Class

Went to the nature center and walked some trails with friends.

And spent even MORE time in the pool!

We did art projects with Cheerios, foam art projects, coloring, beads, ate McDonald's, lots of graham crackers, and went out for ice cream. All in all, it was a great break for Nick! This morning he was laughing in his bedroom and he was so excited to start back at school! I must say, the house was super quiet with him gone. Daddy missed his little "shadow".

Summer Break

The boys' started their summer break last Thursday. Summer break generally strikes fear into the autism household. It means a complete change of schedule, which throws kids like Nick into a tailspin. The first day was the hardest so far. He woke up around normal time and asked about the bus. I told him there was no bus today, no school, and he was off kilter all day long. It did not help that we had an appointment with his new pediatrician at 11am. All went well considering. He ended up getting one shot which he did not like, but was consoled immediately with the band aid. Nick loves band aids. We took Friday "off" and just let everyone relax. Nick has three weeks until he starts his ESY program. So, I have come up with our own sort of 'homeschool' until then.

We have number matching, shape matching, and letter matching. Doing lots of fine motor skills work with beads, foam art projects, puzzles, etc. For what I have above all you need is a laminator with sheets and velcro. Spring for the electric laminator, not the ones that you can do by hand. We have had both, and the electric one works much better. A little more expensive, but well worth it. Of course you will also need a printer, but if you don't have one you could just use a marker and write or draw what you want. HERE  is a link to a wonderful website for ideas.    

And we are not all work and no play! Nick absolutely loves this inflatable pool we set up this weekend :) He is going to be quite tan by the time he goes back to school! Can you say BEST reward EVER?! He will complete tasks in record time to go in the pool! It also keeps him occupied for longer than a microsecond.  This morning, however, we almost had a fatality! This little chipmunk fellow somehow ended up in our pool. I spotted him from the kitchen paddling his little heart out. Michael made the rescue while I got a dish towel to dry the little critter off. A few minutes of some TLC and he was on his way. Poor thing was too scared and cold to protest being handled. I am sure he was grateful :) It made our day to help the little guy(or gal?) out in time of need. Michael wants to be a Vet and help all animals, so this was the absolute high light of his summer so far. Hopefully, no more critters find their way into our pool.

An Old 'Friend' has Resurfaced......

These are some of Nick's episodes that he has started having again. You will see that after he eats his yogurt, his head drops suddenly for a brief second, he recovers for a bit, then starts having more. I would like for one day to be able to get to the bottom of what is causing these episodes. I am going to have his dr look at these videos the next meeting I have, and I am going to e-mail his mental health nurse and see if we can get more answers this time around. He has these throughout the day, not just when he is eating. Somedays are worse than others.

 Here is what I am talking about concerning the drops. They are sudden, and don't last long. This was the most he did them today, but yesterday was a bit more. This is not following his normal path of tics caused by med increase. We have not increased his dose for quite a few months now, and these tend to go away for a while and have now resurfaced. This was also the only time he repeatedly touched his nose with his fingers and smelled them. Not sure if that is just a coincidence or not though. Do any of your kiddos have anything that looks like this? It can happen at any point of the day too, mornings, evenings, afternoons, no matter what he is doing. I just want to know what the hell these things are! It is one of the things we are somehow missing about Nick. I do not know if these are side effects from his med (although I have not increased the dose), tics, or possible small seizures. It has been one of the things that has come and gone and come again for a while now, and I am just wanting some closure on these. I know I may never get it, but I at least have to try.

UPDATE: I have talked with his mental health nurse at the school and she wants to show the videos to his psychologist. Going up there tomorrow to show them to both of them. We will see what happens from there
He has come home from school and has had numerous more of these. I was able to catch about 20 or so on video.

 

Getting Close to Summer!!!

We are starting to wind down the school year here. The weather has been lovely out for the most part, which means Nick is loving to be outside. When daddy is home they take lots of walks around the neighborhood and Nick could not be happier!

Last week Michael started doing some martial arts classes because he is being bullied at school. The last incident was about two weeks ago. (not sure if I blogged about that or not?) The school is investigating it and for the rest of the year the 7th and 8th graders do not have recess together. But we felt that Michael did need to learn how to defend himself for the future, so we signed him up for a couple of different martial arts classes. It turns out that he loves them! So, between the two martial arts classes and hockey, we have an activity 6 out of 7 days.

Nick is doing phenomenal. He is doing stuff in school and then it is translating over to his home life. Yesterday he cleaned up his mess with NO prompting, he is putting away his dishes, and using words more and more. His meltdowns have decreased to about one a day-and that is not even a major one. Thursday evening was a true test of just how far he has come. I had to take him along to Michael's hockey game by myself since Mike had to work. He had one minor episode of aggression at the beginning, but Nick and I were able to control it and enjoy the rest of the game without incident! After every period we went outside for a couple minutes. I would countdown the minutes for Nick "8 minutes til we go outside......7 minutes......2 minutes" After the period was over, I took him outside to sit on the steps for 2-3 minutes. I counted down there as well, "2 minutes and then we go back inside ok...." This seemed to work like a charm. We avoided a massive meltdown, and got to see all of Michael's game. It was a win/win for both of us!

I have another meeting with Nick's team on Wednesday. Since Nick will be out for three weeks before his ESY (extended school year) starts, I am trying to think of things that we can do outdoors for that period.  I am bringing these ideas to his meeting so that we can get some PECS made up of these activities. Other than that, not too much going on here. We are falling into a new 'normal' with Nick. One that has not involved a lot of meltdowns, aggression, or SIB. It has been a wonderful break!

Spring Madness!

Last week was one busy week. Let me see if I can recap what happened.Tuesday morning Nick had a fasting blood draw to measure his levels since he is on the risperidone. One of the things they check is his cholesterol, since the medication can cause it to rise. I let him sleep a little longer in the morning so that we did not have time to sit. The less time we had to sit, the less time he had to miss his morning yogurt. The kids got off to school without a hitch. This was also the first week Mike started his new job. He had training three days from Tues-Thurs, and his shift was from 10am-6pm. After the kids went to school, I had to drop Mike off at work and then travel into Erie to Nick's school to give him his morning yogurt with his medication in it. While there I asked how the blood draw went. The nurse told me he did very well! He did not like the needle part (who does?), but he was fine the second they said "all done". I was glad to hear that he had done so well and that we had avoided a complete meltdown. Tuesday was also Michael's 13th birthday!! He got to go out to Wal-Mart with me and pick out whatever he wanted. This is what he picked out:

Wednesday I had a meeting at the school with his team. I was asked to come up with plans over the three week break that he gets so that they can make pictures for him. They will send us his PECS notebook home with him so that he can have a visual schedule daily. This really does help lessen his anxiety. So now I have to come up with things that we might do over the break. He is doing really well, and we have another meeting set up for the 21st.

Thursday and Friday are pretty much a blur. Thursday Nick came home with a fever, but was otherwise ok. We asked him if he wanted to see the zamboni or stay home. Michael had a hockey game that evening that we had all planned on attending. Nick said he wanted to stay home. We asked him again just to be sure. He said "Stay home". So, I stayed home with Nick while the other boys went to the game. I was a little bummed out, but in the end I am glad I stayed home with Nick. They won the game, and I got the report that Michael made some pretty awesome saves. (Damn it, I hate Murphy's Law! Just when things are going good...WHAM!) Nick ended up missing school on Friday because by this time his fever was around 101 and he was coughing and sniffling. It went up and down all day long, into Saturday. His fever got as high as 102 Friday night when I woke him up for another dose of medicine.

Saturday we had a small birthday party for Michael. It was a rather low key day, and by that time Nick was feeling good enough to be a part of the action. He enjoyed the company of the other kids, even if it was strictly on his own terms just by being near them. Through all of this we had very few meltdowns (YAY!!) and escaped another sinus infection. I am so petrified now that every cold he gets will turn into a sinus infection. I use all kinds of nose sprays, saline, and decongestants when he is sick.

This week is looking a little less hectic. Friday I am going to a Mother's Day lunch at Nick's school. Thursday is another hockey game. I also need to make a trip to the grocery store tomorrow. Other than that, much more relaxed than last week. At least, so far. It is only Tuesday after all! :)