Thursday, November 27, 2014

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!!

Monday, August 11, 2014

Overdrive

It is 6:50am and Nick has been going strong since 4:00am. I know this because I heard him in his bedroom doing scissor kicks on his bed, laughing and carrying on. I let him be until 6am, when I had to wake Michael up for soccer camp. His room was a mess, and he had undressed himself...this is a normal occurrence. I get a new pull up and check the pajamas he was wearing for any signs of urine. I notice that these are not the ones he wore to bed, which means that he was changed in the middle of the night by hubby. This is also a rather normal occurrence. So much laundry.

By 6:40am he has already had his morning medications, been changed now twice, and working on his second cup of milk. I have already been attacked once. Nick is working himself up into a frenzy. He is over stimulating himself by being himself. Flapping like crazy, toe walking, more flapping, making his usual happy noises. I wait for the inevitable. It comes minutes later. He is in the kitchen and suddenly there is quiet. It is followed by him running towards me trying to hit me half heartedly. I tell him to go sit on the ottoman, and he does so. He has already had a couple of his tics this morning too-I can feel it is going to be a craptastic day. I hope I am wrong.

7:02am: He is now laying down on the ottoman by our heater. Meds have seemed to kick in and he is calm. This is how every single day starts. Handling such things at such wee hours of the morning is why we live on caffeine. It is also most likely the reason why I look the way I do by 8pm every night. A day dealing with all of this should be an Olympic event.

Nick is a 10yr old, 80lbs, 4'10" toddler. Think about that for a second. It has gotten past the point of one person being able to handle him alone in public. Nick gets overstimulated very easy. I don't think people realize just how easy this happens. Numerous times a day he will request to have his music on. Which is awesome. We let him listen to it. On plenty of days it will be on no more than 5 minutes and he goes from being happy, to attack mode. We turn it off. He will ask for it again after he is calm. We turn it on, and it is the same song and dance for the entire day. This happens with the tv, ceiling fan, lights, toys, computer, ipad, you-name-it. He will want to go somewhere; so we take him out for maybe a simple walk or trip to the store. You guessed it. Minutes later he goes into rage mode. Sometimes during a rage his tics come out, which leads to more rage. Sometimes it happens after a rage-which of course leads to more rage, sometimes his tics are the cause of his rage. Either way, tics and rage often go hand in hand.

7:20am: Nick is asleep. We will see how the day goes.

10:45am: Nick has awoken from a nearly 4hr nap. He is changed again and this time I actually get him dressed. He has another tic. I think this one is caused by Juno jumping up and down beside him. He wants to listen to his music and he turns on the ceiling fan. I have a happy kid now, so I just sit and wait for what will eventually come. But for now, he is happy. I go down stairs and put in a load of laundry-the clothes and sheets from last night. There are three baskets awaiting folding. I could go ahead and chance doing these now, but I wait. See, if Nick cannot get a hold of me during a rage, he will turn to something in the house, most vulnerable is well, everything. That is one thing about having a "toddler" who is nearly 5ft. Things are not out of his reach, and he can do some real damage. Both to himself, and our house. An example? During his rages he has broken TWO flat screen TV's, put his hand through a glass storm door, and has ripped off three drawers in his dresser.

11:25am: Of course. The phone rings. The nurse is informing me that his ultrasound is scheduled tomorrow at 9am (we think his hernia has come back). He goes into over-stimulation mode as I am trying to write the information down. He is smacking me on my back repeatedly. I wonder if the nurse can hear the whacks over the phone?

11:29am: Another attack. His music is now off and he is sitting on the couch. Welcome to my world folks.

11:40am-12:10pm: Start cooking him some lunch. I am in the kitchen and he is in the living room moving the ottoman. He moves it directly under the ceiling fan. He steps on it, and I come around the corner just in time to see him jump up and try to grab one of the fan blades. I yell at him to get down. He complies. I go back to cooking his lunch and he proceeds to get up a second time and do it again. I yell at him to get down once more. By this time, his lunch is ready. He eats, and we are able to finish up some dishes without too many problems.

12:13pm: As I am writing this, he is on the porch with dad. I hear the dreaded screams that warn me of a likely bigger aggression on the way. He has been on this up and down roller coaster all day. Hubby manages to calm him down, and for now, we have avoided it.

12:15-2:30pm: Finally able to take a shower! Nick's little friends came over briefly. And yes, they ARE little. Like 4-5yrs old. He loves having them over, albeit in very small doses. And he does not "play" with them. He lays on the couch stimming while they play with each other. He knows they are there, and is happy, and they come up to say Hello to him every few minutes. That's about all the interaction he can tolerate. Needless to say, they get bored pretty fast, and usually leave after a little while-but it's okay-they come back in spurts throughout the day. After my shower I folded three baskets full of laundry while hubby watched Nick. During this time Nick threw his chips twice, and tried to grab the ceiling fan three times. I cleaned out some old clothes that Nick has outgrown to make room for the clothes that were handed down to him from his big bro. We put clean sheets on Nick's bed and cleaned his room up. By this time it was time for his afternoon meds. Have seen quite a few of his teeth clenches today.

2:30-3pm: Nick has been in a decent mood (YAY!) so we played around for a little while.

Sunday, July 20, 2014

Running on Empty

Hello everyone!! I know I have been so bad about blogging this year, and for that, I apologize. A lot has been going on that needed my attention. It still does. It never ends.

I finished my sophomore year of college. Barely passing my statistics class, but I passed, and that is what counts. Next semester will be even busier with two different practicums at two different schools. One of them will be at Nick's school-so that should be interesting.

Michael turned 15 this year! I cannot believe it. I know I say that every year, and every year it is true. Since we moved into our house last year, he has been asking for a dog. It was awesome. The evening before his birthday, we told him we were going out to celebrate then because on  his birthday I had an evening class that I could not miss. We took him to the animal shelter and picked out a dog. We ended up not getting the one we had actually inquired about, but another dog. We brought Juno home on May 1st, which is Michael's birthday. I don't think I have seen a happier kid!

Less than a week after bringing Juno home, we had to take her to the vet. She had complete her treatment for kennel cough at the shelter, at least we were told she had. But she was getting worse with each passing day. By the time we took her to the vet, she was not eating or drinking and having bad fits of coughing. It turned out to be pneumonia! She stayed at the vets overnight and got IV fluids and antibiotics. She came home again the next day and over the next three weeks she finished her medications, began to eat and drink, and was once again playing. Happy to say that now she is in perfect health!

My mom came to visit us for a week at the end of May. It was awesome to have her here to talk to, shop with, and just help around the house. I never ask for it, but she always ends up lending a hand.

Nick continues to have rage issues and tics. The tics seem to effect his behavior. The more aggression we see, the more tics. His self injury was also on the rise again just a couple weeks ago. His school did not know what to do, and this is an autism school people. For the first time in two years, we were called down to observe him. His neurologist thinks this is strictly a mental health issue, everyone at his school thinks it is more of a neurologist issue, with possible mental health issues. They are strongly suggesting we get another opinion from a place like Kennedy Krieger, or somewhere else that deals with autism AND neuro issues at the same time. They tell us this is not all to be blamed on just autism. His school is trying one last method to try and sort out his problems, and it seems to be helping-although it has only been a few days.

This weekend has been the worst one in a long time. His sleeping is all out of whack. For the last two days he has only taken naps. The longest stretch of sleep he has done has been from 9pm-midnight. He may take two hour naps throughout the day, but the rest of the time seems to be filled with lots of aggression. We are exhausted. He is regressing again behaviorally. I just feel like we are losing this battle.

Thursday, February 13, 2014

Ten Years Old!!

My little baby turned TEN years old yesterday! I can't believe it! We held a little family party for him on Sunday. Nothing much, just a few presents and cake. Nick thoroughly enjoyed the cake :) He ate approximately two pieces of it, the third piece he started to have fun flinging it around. I can only let him have so much fun before it starts getting out of hand :)

He has been doing great!!! For his birthday he picked out another stuffed "Sully" and it is so cute to see him gather up all three of his "Sully"s and 'play' with them. A few days ago, he thought the smallest Sully needed a bath in the toilet, with the other two watching from the floor. He was quite pleased with himself! He also likes to stand in front of the bathroom mirror and chat with himself. He cracks himself up!! It can be 5am when he does this, and I just lay there silently laughing at his antics :) He has just been a Mr. Personality recently and we are loving it. He likes typical pre-teen things like music, and now he is getting into watching The Justice League. One of his absolute fave musicians is Weird Al Yankovic!! He has a lot of interests ranging from household appliances to watching ice hockey videos, and everything in between. When his aide is here, Nick keeps him busy surfing YouTube for whatever Nick can think of. It is quite funny really. He parks himself in front of the computer and Dupri sits right beside him. Who knows? Maybe one day he will communicate via a computer keyboard.

We are all doing good and keeping busy during this crazy winter. We have had 107 inches of snow this year. I can't remember what grass looks like LOL. We have had temps well below zero, the kids have had four snow days (a rarity in our area!). I think today was the first day we broke 20 degrees for a long time and it felt so warm!!! Other than that, I got nothing. Things have been quiet. Stable. We are getting Nick back and we could not be happier.

Saturday, January 18, 2014

Happy New Year!!!

I know I am a little late on that, but better late than never right?? Our New Year's Eve was pretty low key. We are not really your partying type...if you have not noticed LOL.

The boys went back to school on January 2nd. Two days later Nick came down with a pretty decent cold and stayed home for the next few days. That week was all screwed up anyway because we had a blast of cold and snow (mostly cold. wind chills were a brutal -20f!) and the schools were closed(!!) Tuesday, and had a late start Wednesday. I kept Nick home until Thursday anyway because the kid could barely muster any strength to stay up for any length of time. By Thursday, everything was back to normal routine.

I had a meeting with our county care management, and nothing is changing with that. We are still going to get 10 hours a week with his support staff-which he loves. His BCBA will also be designing some trials/goals for him to start working on while he is here with Nick. On Wednesday I had a meeting with Nick's team at school. Unfortunately, his aggressions are going up once again. He was only at 8 per day and now he is at 16 per day. Everything else they reported was going great! So, maybe it was just that his schedule has been all wonky and once we get settled into the year, things will go down again. We hope so anyways!

Last weekend I noticed he was having some fairly decent staring spells. The kind where he will not respond to you. He had about three of them that I was able to notice, and I am fairly certain he had some yesterday. He is already taking Depakote, so it's really just a watch and see thing. He has another neurology appt set up for the beginning of April. Of course, if things get worse we will not wait for that appt.

I am starting back to school after having a nice 6 week break. Taking a full load of classes again this semester. Michael wants to take piano lessons, and do spring hockey. 2014 looks to be just as busy as 2013 was. Hope everyone has a great weekend!!

Thursday, December 26, 2013

2013....Year in Review

To say that I am happy to put 2013 behind us would be an understatement. I can only hope that next year will be better. With much less medical stuff going on. Here are the high lights from this year, or more or less, high LOWS.

January: Things started off crappy. Right on January 1st we found out about a death in the family. Way to welcome in 2013, I should have known right then that this would be a year to be reckoned with.We made the decision to look at buying a house, and started the process with the VA. January 25th, 2013: We went to look at a house around 4pm that evening. Nick was absolutely fine. Running around, giggling, having a grand old time exploring the open house. 30 min after we got home all hell broke loose. Screaming, jerking, screaming again, jerking more, becoming aggressive, self injurious, etc. This continued for three solid hours before we took him to the Emergency Room. Something had to be wrong. Nothing came up. We took him home after speaking with the hospital psychiatrist under her orders to decrease his risperdal. We thought that could be the culprit. Thought it was just a fluke thing and it would be over. WRONG. We endured these episodes all weekend. Every 15-20 minutes. By Monday, January 28th, we had a prescription for Ativan. It seemed to work, although, temporarily. He went back to school January 29th.

February: Nick had a new morning ritual of screaming and swiping everything off the bathroom counters. It now takes two of us to get him ready for school. In between scream fests we dress him and brush teeth. His psychologist makes a 2.5 hour housecall and sees one of his episodes first hand.
February 12: Nick turns 9 years old!!  February 14th: He starts Depakote. The Ativan along with risperdal were not cutting it any longer. Still having 30+ episodes daily. February 16th: First day in a MONTH that he did not wake up in a complete rage.

March: Start it off on the 1st with a double ear infection. Yay. Start the process to get referrals to Pittsburgh Children's Hospital for neurology. Still having 20+ episodes daily with increasing jerking movements. Self injury is also through the roof.

April: One early morning rage fest leads to our second broken flat screen tv in two months. Increase his depakote since he is now back to waking up at night in a rage. After the increase he is once again sleeping though the night and jerking less.

May: May 1st, Michael turns 14 years old. We celebrate it in the Emergency Room. Why? He broke his arm in two places by falling during his soccer game. Get home close to midnight. Wake up hours later to take Nick down to Pittsburgh. Depakote is increased again because we are still dealing with these violent episodes. 24hr EEG comes back normal. Schedule his MRI.

June: After a few e-mails to his neurologist with videos of Nick doing his odd movements, he wants us to see an epileptologist.

July: We get a miracle! A few days without any jerking or twitching!! Good days at school as well!! Did not last long though. Start inquiring about a protective helmet for his head. The bruises he had were scary looking. Close on our new house!

August: Move into our new house. Things with Nick are going along okay at best. We will take it. But it never lasts long. Michael starts his freshman year in High school and is on the Varsity soccer team. He starts complaining of trouble breathing when he is at practice. We think it is just because he is out of shape. School starts for both boys.

September: Nick's team at school urges me to get a second opinion at the Cleveland Clinic regarding his outbursts/jerky movements. Yes, we are still dealing with them. Although it seems to have stalled out around 20+ a day.

October: Psychiatrist starts him on Clonidine. We HOPE this works. I am alarmed at how tired this new medication makes him and voice my concerns about possibly taking him off it to his team at school. I stick it out, waiting for a miracle. We go to Oktober fest and take the kids out for Halloween. Nick makes it an entire 30 minutes trick or treating! He is even excited about it. Progress at last!

November: We finally start seeing the benefits of Clonidine! The Wow factor has come! Nick goes to Cleveland Clinic and we get a more *definitive?* diagnosis of severe anxiety. (With Nick, everything is rather *severe*. The kid goes BIG with everything :) ) ALL of his behaviors are down to SINGLE DIGITS!! I am talking that we go from 60 episodes daily in Jan, hold out at around 20+ for months, and now are LESS than 5 daily!!!! A true MIRACLE! His self injury is also GONE. November 12th: Take Michael to the pediatrician because he has had a cough for a while, and on this day he goes to the school nurse unable to catch his breath. Turns out to be asthma. He now carries an inhaler everywhere he goes. We have to educate ourselves on a whole new health issue now. We get through Thanksgiving without any major incidences. Hardly even a minor incidence. All of us actually ENJOYED the holiday!

December: Nick continues to do rather well on the Clonidine. He will still wake up sometimes at night, and tends to wake up early in the morning, but he is happy. I am not being attacked by a raging child while I sleep anymore. His bruises from near constant head banging are gone, and his rage attacks are short lived. He is easily redirected, and able to calm down. The Clonidine calms him and after his morning dose he will usually nap for a bit. Which is ok. He is happy. His personality is once again shining through. Our days are no longer filled with attack after attack. They are filled with him saying he wants to hear "Roar", or "Best", being mischievous, laughing, smiling, and being "social". He wants to go places! He is enjoying life again! I can only hope that this lasts for 2014 and that we are done with medical issues for a long time! I don't know what next year has in store for us, but I certainly hope it is better than 2013. Happy Holidays everyone!!!




Thursday, November 14, 2013

Anxiety......

It has been a couple of months since my last update, so let me see if I can catch up on everything. School started and it has been busy as usual. I am taking four classes this term-which has been a bit of a stretch trying to manage everything; but has been okay. Tuesdays and Thursdays are the worst right now. I have classes at 8am, 1:30pm, 4pm, and 7pm on those days. Then on Wednesdays I also had practicums to go to, and meetings with Nick's school team. The semester is coming to an end in just four more weeks, then I have a break, and then Spring semester starts.

Michael is getting straight A's in school! He is now in the ninth grade. He stands 5'4" tall and is 120 lbs. At the beginning of the school year he came down with what we thought was just a typical cough. He complained of being out of breath and feeling like he was breathing through a straw. We just thought it was because he had started soccer on the Varsity team and that he was just out of shape. He had practices twice a day that involved a lot of running. We just chalked it up to that. Last week we get a note from the school saying that there was a confirmed case of whooping cough-and since Michael still had fits of coughing, we took him to the pediatrician to get it checked out. Turns out he is now suspected to have exercise induced asthma! We left the office with three new prescriptions. One is an antibiotic in pill form that he has to take for 5 days (just in case he does have some infection-his chest sounded rattly), one for an inhaler, and one for a spacer. We go back the week of Thanksgiving for a follow up. This kid wants to do so many things in life. He has lofty goals like attending Harvard or West Point, becoming a para-rescue man, and joining the Air Force. His best friend in school is in the ROTC program, and Michael cannot wait until he can sign up next year! This kid is going places!!

Nick has continued to have sudden rage episodes with jerking, despite us being "harder on him" as per the last neurologist visit, so we went and got a second opinion from the Cleveland Clinic. We drove there last Friday and presented the neurologist with all the documentation of these events that had been written up by members of his team at school. They think he has severe anxiety and recommended we put him on an SSRI like zoloft. Clonidine was added to our med list in early October, and I am happy to say that he is doing much better! We still see sudden rages and some twitching, but his self injury has made a drastic improvement! Since he is doing so good right now, we are not rushing into any med changes, and will discuss a plan at the next team meeting.

Halloween this year was wonderful!! Both boys were able to wear their costumes to school on Halloween :) Michael was Dr. Who, and Nick was a Minion. I took Nick out trick-or-treating with his aide, and we were actually able to stay out for a half hour! The only time he was afraid was when the train would come by. He would bury his face and drop his bucket. After that was done though, he was able to persevere and get some candy. He was so drained after 30min, that he just came home and went upstairs to his room. But he did it!!

In case I don't get on here again for a while, hope everyone has a wonderful Thanksgiving, and Happy Holidays!!