Wednesday, November 14, 2012

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 :)


Sunday, October 14, 2012

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!! :)

Thursday, September 20, 2012

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....

Thursday, September 06, 2012

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.

Monday, August 27, 2012

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?

Thursday, August 23, 2012

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!

Thursday, August 16, 2012

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.

Saturday, July 28, 2012

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!

Saturday, July 21, 2012

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.

Saturday, July 14, 2012

Happiness....

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

Thursday, July 05, 2012

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!

Monday, July 02, 2012

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".

Wednesday, June 13, 2012

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.

Tuesday, May 29, 2012

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.

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Sunday, May 20, 2012

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!

Tuesday, May 08, 2012

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! :)

Monday, April 30, 2012

My Worst Fear........

I know all parents would be deathly afraid of this happening, but for some reason I never have worried about it as much with Michael. He is 'NeuroTypical', and would understand the dangers of water, and probably be afraid of getting into trouble about getting wet. Nick, it is a different story. Nick escaped the house numerous times last summer. One time we did not even know he was gone until a neighbor brought him home! When he does escape, he cannot answer questions about who he is or where he lives. He won't budge if you call his name. He won't listen to it being called and then think "They are looking for me, I better go home now". That is the part of his autism that can indeed become FATAL. Nick loves water. He ran into a lake when he was three; luckily I caught him just as he went underwater. I was only 10 feet away, and he was still hard to catch. He has run across the street to get to a gas tank on a minivan. One of our qualifications for his therapists was that they had to be able to sprint after him! I know another autistic boy who also liked to elope from his house-and they did have to get the police involved to search the neighborhood. Mike and I also got involved because we knew the little boy and his family, and KNEW how it felt to have your child lost. My heart goes out to this family. And to those of you out there who are so vehemently against child harnesses, you might want to re-think that view if your child is autistic. We have two for Nick, and have used them at times. It is not bad parenting, it is safety.

And this is why the first question I ask when I get home and don't immediately see Nick is : Where's Nick?
This is the last day of Autism Awareness month. I hope you have become better educated on this neurological disorder. Do not judge the next time you are out in a store and see a child having a tantrum, wearing a harness, speaking gibberish, walking on tip toes, screaming at the escalator, eating only french fries, and/or crying and hitting himself or his parents. Don't judge his parents harshly. They are probably just trying to hold it together to the end of the day. Don't stare and point, and for Godsakes do NOT give unwanted, 'helpful' advice if you know nothing of the situation. It's not like we go around announcing to everyone that our kid has autism or put a sign on him. If you can't say anything nice, don't say anything at all.

Pray for this family in their time of need.



Body of autistic child found in Fort Gordon lake

Seven-year-old had compulsion to touch water when distressed, officials say

Posted: April 30, 2012 - 9:33am

FORT GORDON, GA. | Authorities say they found the body of a 7-year-old girl at the bottom of a lake after she wandered from her home on a south Georgia military base.
The Augusta Chronicle reports that Hannah Ross left her house around 6:40 p.m. Saturday, touching off a search that involved more than 100 volunteers at Fort Gordon.
Relatives say Hannah was autistic and had left home upset. Fort Gordon public affairs spokesman Buz Yarnell says that whenever Hannah was distressed, she had to touch water, which is believed to have led to her death.
Hannah's body was recovered Sunday afternoon by a dive team at the bottom of Soil Erosion Lake behind her home on the Army base.
Yarnell said the child's family had just moved to Fort Gordon from California.

Read more at Jacksonville.com: http://jacksonville.com/news/georgia/2012-04-30/story/body-autistic-child-found-fort-gordon-lake#ixzz1tYxhFBQX

Thursday, April 26, 2012

This is an Outrage!! Sign the Petition to Have These People FIRED!!



The father of this 10yr old non-verbal autistic boy sent his child to school with a wire attached to him. He wanted to know why he was getting reports that his son was getting aggressive in class. Without any information about these incidents from the teachers and staff at the school, and being that his son is not able to tell him what is going on in class, he sent him to school with a wire to see if he could catch anything that would give him a clue. What he caught on the audio tape was disgusting.

This is an outrage people! I send my autistic son to school every day in good faith that the people there will take good care of him, love him and respect him as we do. Since he cannot tell us what happens in school, we rely heavily on reports from his teachers as well as his behavior. To think of something like this that could be happening to ANY child, much less one who is DISABLED, breaks my heart and makes me ill. I am asking everyone who watches this video, reads my blog, has an autistic child, knows of an autistic child, has typical kids, has no kids, or even teaches children, to sign this petition to get these people fired. Adults who treat children like this do not deserve to be parenting, much less teaching.

Autism Awareness is for everyone.

Here is the PETITION to sign.



Wednesday, April 25, 2012

Meeting with the Psychologist....

I met with Nick's psychologist today at his school for the first time, as well as two others from his 'team'. Nick has a 'team' of people involved in his daily activities at the school. This meeting was to 'officially' place him in the partial hospitalization program at the school. We meet with them every 15 days to go over progress, behaviors, or any restraints that they have had to use, medications, etc. We will be kept much more in the loop with things to make sure that everyone is on the same page. He is using PECS and words to communicate (YAY!) and they are going to provide us with his PECS notebook so that we can use them at home as well. His behavioral therapist informed me that he has transitioned really well (much better than they thought he would) and his average for massive meltdowns at the school over the last month has only been two a week! Mini meltdowns averaged from 4-10 a day. They have only had to restrain him twice since he has been there! Other times they get him to sit in a chair and one person stands behind him while the others kind of create a circle around him to prevent aggression. It has been working! He sits and calms down. Their goal for him in the coming months is to decrease these episodes by 10%. Wonderful! His meltdowns at home have also decreased dramatically! He now only has maybe 1-2 a week vs every hour! I can't begin to tell you how good this is for him! No change in medications for now, as the psychologist really wants to investigate him further before anything is changed. The risperidone is a good med, but we are at the max dose we can get him to without any adverse side effects like movement tics.

Nick however has apparently come down with a bug that is going around. Mike has been sick all week with this thing, and Nick threw up this afternoon in school and had a messy diaper. Ugh. He has to stay home for 24 hours since he had the runs, so I had to call transportation this afternoon and tell them he would not be on the bus tomorrow. PA has a rule that if the kids miss the bus three times without an excuse, then transportation gets canceled for them. So I called transportation, told them his bus # and our address, and said he would not be on the bus tomorrow because he is sick.I am hoping that with all the probiotics he gets this won't be a very big deal. He has kept everything down so far, and is now sleeping. I will keep checking on him tonight to make sure he did not throw up while asleep. He has done that before. I went into his room and he was laying in a pile of vomit, he did not wake up or anything. Scary to think about the fact he could have choked on it during the night.

Our not-so-busy week has turned into a busy one. I start training for my new job on Friday, Saturday Michael has a hockey try out for a local school team, and Sunday he has his first games for Spring hockey. On top of all that, we are hoping this 'flu' does not go through the whole house. I am hoping the rest of us can escape this crud with only minimal effects. Only time will tell. We are like ticking time bombs up here :( Going to check on my baby boy now.....


Sunday, April 22, 2012

Nothing Much to report......

This week passed by and we really have nothing new to report. Things have been going well with the supplements, and nothing but progress for Nick.

Yesterday I took Michael to see the movie "Chimpanzee", and when we got back, Mike told me that Nick had several tantrums because he apparently wanted to go with me. So, I went upstairs to change him and asked him if he wanted "raviolis or bye-bye?" (it was after lunch time, so I thought he might be hungry). He said "bye-bye". I got him dressed and we said our goodbyes to daddy and were on our way to Toys R Us. I figured the toys might make it more fun for him, instead of going to just a Wal-mart or Target. He was so happy to be out of the house and doing something with Mommy. We ended up having a great time together and he came away with a new Angry Bird :) Have I said how much he LOVES his Angry Bird stuffed pillows??? So, to have a new one put a huge smile on his face! More and more, Nick is becoming aware of things. It is a huge development for all of us. The other day he wanted to be outside with Michael when he was playing with his friends. Nick just stood at the door looking out. It is becoming clear that he wants to be like Michael. But, he just can't. It is difficult to go places with him because his behavior is so unpredictable. He can be fine one second, and the next he can be in a full-blown meltdown. And that leads to no one having a good time, and leaving places early. I am going to have to make more of an effort to find that balance I guess. It is a work in progress, and it seems that everyday Nick is teaching us more about Classic Autism that we never thought of. He is once again HAPPY. All things considered, life around here has been boringly 'normal'. No major meltdowns, no school calling, no SIB, no aggression. Just boys being boys.

I had a job interview on Thursday for Sears. They liked what they saw and I ended up getting the job. It is only part time, but that is really all I need. Mike is still searching and sending in resumes. Hopefully he will find something soon. Michael's school is re-organizing next year and he will have to be sent to another school. The school they are wanting him to go to is not exactly a great school. We are going to see if we can find him another school in the district for next year. The only appointment we have this week is on Wed. we meet with the psychologist at Nick's school. Other than that, like the title says, not much to report!

Hope everyone has a great week!!

Saturday, April 14, 2012

Supplements......

These are the only two supplements that we are doing right now with Nick. The first is a probiotic that aids in digestion and helps the immune system. Nick has had near constant mushy type stools since infancy. We were told that "mushy" stools were a variation of normal. We tried altering his diet, and yogurts with probiotics in them. None of that seemed to help as much. He in no way takes pills whole, so we have a pill crusher (that has MANY miles on it....) and I am able to just crush up the probiotic and give it to him in his regular yogurt. This seems to work much better! He has less "poopy" issues, and is a bit more regular. Without these he can go as much as 5-6 times a day. That is 5-6 messy, mushy, yucky diaper changes. With the probiotic, he is more on a "normal" schedule of maybe once-twice a day, and much less of it is mushy.

The second one is Calcium Magnesium Citrate with Vitamin D3. This comes in either a liquid or pill form. We use the liquid form that is blueberry flavored. There are a couple different flavors, but this one tastes the best. Two tablespoons is the amount for an adult daily, but we only give Nick two teaspoons a day and that seems to do just fine. We first used the magnesium cal. citrate while we were in Florida. I had read on a sensory processing bulletin board that it helped reduce anxiety, behavior problems, and physical/verbal aggression. It also helps in noise sensitivities. All of which Nick has. After taking this supplement for just a few days, Nick was able to tolerate things like taking short trips to the store, and even going to the barber shop and getting his hair cut. Neither of which could be attempted without meltdowns before. He felt better. He was wanting to do things! Nick has a lot of sensitivities with his senses. We have auditory processing and visual processing disorders, as well as proprioceptive issues. When things get overwhelming, he does not feel 'safe' and that leads to his anxiety going way UP and then meltdowns ensue. It is literally like a fight or flight response. The magnesium helps combat that. There are many supplements out there to help autistic kids, and you can easily go overboard. We like to take it one at a time, and not to add too many things to his daily regiment. These were the two main issues we wanted to help him with, and so far so good.

Tuesday, April 10, 2012

Waiting for the bus....

I took this picture of Nick this morning as he waited for his bus. The harness is used on him so that he does not get up and wander around while the bus is in motion. This is just one of those things that you have to think about when you have a special needs child. I realize it is for his own safety, but I don't like the fact that he HAS to wear this little accessory. Again, it just reminds us how different our lives are from the "norm". But, it is for his own safety, and for that reason alone I like this item.

Friday, April 06, 2012

Treatments for Autism.....Pt.3

Treatment Approaches

Clinical Therapies
 
Complementary Therapies
 

Biomedical Treatments
 
Family Support
 
Service Delivery Models
 
 I know I have talked about some of these already, this is just a more comprehensive list as there are sooooo many treatments these days for autism. Here is a list of what we have tried since Nick was diagnosed.

*GF/CF diet. This was back in the very beginning. We did not see any significant changes in him, at least not enough to warrant spending the money on special foods.
* Cod Liver Oil. This was taken to help with speech. I thought I noticed a very slight increase, but not enough to be able to tell whether or not it was the supplement or just maturing.
* DHA vitamins
* Magnesium with calcium and D3-I did notice that he was less anxious with this. It reminds me that I need to get another bottle.
*Melatonin-this was a godsend to help him fall asleep. We still use this every once in a while.
*ABA therapy-This has been the biggest help for Nick.
*Occupational Therapy-this has helped him with fine motor skills like holding pencils, and writing.(although we still have a hard time with this!)
*Risperidone (Risperdal)-This has helped him to become more manageable, less mood swings, and able to function daily.
*Hippotherapy-It was wonderful while we got it! I would do this again in a heartbeat as Nick LOVED it. However, insurance does not pay for this, and it is expensive!
*Chiropractor-He offered Nick treatment for FREE. He seemed to like it, but after about a year it was difficult to tell whether or not it was really helping. Our schedules were also getting busier, and it was getting tougher to make the weekly appointments.
*Clay baths, Epsom Salt Baths-supposedly to help 'draw' out toxins
*Pro-biotics-once again, these did help with his stool issues, I just need to get more of them.
*Mainstream Educational setting-Did not work for Nick. Even in the autism class he was failing. We have since enrolled him an a special school for disabled kids. He is thriving there, and we are happy.  I now have a rule for every therapy/supplement we decide on. It has to have a WOW factor. If we notice a drastic change in him, we keep doing it. Some therapies, like the Hippotherapy, are just kept because Nick has fun. If he can have fun, even though changes may be negligible, I will keep a therapy. We go through periods where we are packing his schedule with all this stuff in order to help him, but then it interferes with actual family life and we scale things back. As of right now, we are happy with our status-quo.

I got the info above from this link:  https://www.firstsigns.org/treatment/treatments.htm

Wednesday, April 04, 2012

Autism Therapies Pt.2......

Autism Teaching Methods: DIR®/Floortime

Dr. Stanley Greenspan, a child psychiatrist, developed a form of play therapy that uses interactions and relationships to reach children with developmental delays and autism. This method is called the Developmental, Individual-Difference, Relationship-Based model, or "DIR®/Floortime" for short. Floortime is based on the theory that autism is caused by problems with brain processing that affect a child's relationships and senses, among other things.
With Floor Time, the child's actions are assumed to be purposeful. It is the parent's or caregiver's role to follow the child's lead and help him develop social interaction and communication skills.
For example, a boy may frequently tap a toy car against the floor. During a Floortime session, his mother may imitate the tapping action, or put her car in the way of the child's car. This will prompt the child to interact with her. From there, the mother encourages the child to develop more complex play schemes and incorporate words and language into play. Floortime is more child-directed than some teaching methods. Its goal is to increase back-and-forth interaction and communication between child and adult.
Some school systems are incorporating this strategy into their programs, but usually do not make this their primary means of educating preschool-aged children with autism or PDD. With its strong emphasis on social and emotional development, the Floor Time method may be a natural complement to a behavioral teaching program -- such as Applied Behavior Analysis or Verbal Behavior -- or to a TEAACH program.
Floortime is being used by some families who prefer a play-based therapy as a primary or secondary treatment, especially for toddlers and preschoolers. Floortime advocates say it can be used along with other therapies.
Research into Floortime is continuing. A randomized, controlled study is underway in Canada to determine the effectiveness of intensive DIR/Floortime treatment for one year and two years.
In a 2005 study, Dr. Greenspan and Serena Wieder Ph.D. reported on 16 teens who had responded favorably to DIR/Floortime therapy in their early childhoods. Ten to 15 years later, these boys had "healthy peer relationship and solid academic skills," according to the Interdisciplinary Council on Developmental and Learning Disorders (ICDL), which Dr. Greenspan chaired. Dr. Greenspan died in 2010.
Floortime DVD Training Series. Set 1 The Basics: Relating and Communicatingfloortime by Stanley Greenspan M.D. and Serena Wieder Ph.D. This two-disk set teaches the basics of using the Floortime Method to teach your child or student. Floortime DVD Training Series. Set 2 Sensory Regulation and Social Interactionfloortime for families who've moved beyond the basics. FloortimeDVD Training Series. Set 3: Symbolic and Logical Thinkingfloortime completes their training series.

If you would like to know more, you can just click on this link:  http://www.autismweb.com/floortime.htm
We have not personally used the Floortime approach, but have heard great things about this program as well. I think the type of therapy used depends a lot on the personality of the child. For some kids, ABA just doesn't work. For some, it does. Whatever the therapy you use, if your kid is happy and making progress-then stick with it. That is what really matters.

Tuesday, April 03, 2012

Autism Therapies...Pt. 1


Autism Teaching Methods: Applied Behavior Analysis and Verbal Behavior

Applied Behavior Analysis, or ABA, is a method of teaching children with autism and Pervasive Developmental Disorders. It is based on the premise that appropriate behavior – including speech, academics and life skills – can be taught using scientific principles.
ABA assumes that children are more likely to repeat behaviors or responses that are rewarded (or "reinforced"), and they are less likely to continue behaviors that are not rewarded. Eventually, the reinforcement is reduced so that the child can learn without constant rewards.
Research shows that ABA works for kids with autism. "Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior," according to a U.S. Surgeon General's Report.
The most well-known form of ABA is discrete trial training (DTT). Skills are broken down into the smallest tasks and taught individually. Discrete, or separate, trials may be used to teach eye contact, imitation, fine motor skills, self-help, academics, language and conversation. Students start with learning small skills, and gradually learn more complicated skills as each smaller one is mastered.
If a therapist is trying to teach imitation skills, for example, she may give a command, such as "Do this," while tapping the table. The child is then expected to tap the table. If the child succeeds, he receives positive reinforcement, such as a raisin, a toy or praise. If the child fails, then the therapist may say, "No." The therapist then pauses before repeating the same command, ensuring that each trial is separate or discrete. The therapist also will use a prompt - such as physically helping the child tap the table - if the child responds incorrectly twice in a row. This "no-no-prompt" method is used in some traditional ABA programs.
However, many ABA programs now use prompts for every trial, so the child is always correct and always reinforced by praise or a toy. This technique is called "errorless learning." The child will not be told "no" for mistakes but rather will be guided to the correct response every time. The prompts will be gradually reduced (or "faded," in ABA language), so the child will learn the correct response on his own.
ABA may take place in the home or a school. A consultant or board certified behavior analyst -- usually someone with a master's or doctoral degree in psychology -- often supervises the therapy.
Some people incorrectly assume that ABA only describes the method developed by Dr. O. Ivar Lovaas, a pioneering researcher in the Psychology Department at UCLA. Lovaas developed one form of ABA. In 1987, he published a study showing that nine of the 19 preschoolers involved in intensive behavioral intervention -- 40 hours per week of one-on-one therapy -- achieved "normal functioning" by first grade. Note: Several decades ago, Lovaas described using mild physical punishment for severe behaviors during therapy sessions. He later rejected punishment, and modern behavior therapists do not use it. Dr. Lovaas, 83, died in 2010.
ABA programs usually draw upon Lovaas's decades of research, but they also may incorporate different methods and tools.
Applied Verbal Behavior or VB is the latest style of ABA. It uses B. F. Skinner'sverbal behavior 1957 analysis of Verbal Behavior to teach and reinforce speech, along with other skills. Skinner described categories of speech, or verbal behavior:
  • Mands are requests ("I want a drink.")
  • Echoes are verbal imitations, ("Hi")
  • Tacts are labels ("toy," "elephant") and
  • Intraverbals are conversational responses. ("What do you want?")
A VB program will focus on getting a child to realize that language will get him what he wants, when he wants it. Requesting is often one of the first verbal skills taught; children are taught to use language to communicate, rather than just to label items. Learning how to make requests also should improve behavior. Some parents say VB is a more natural form of ABA.
Like many Lovaas ABA programs, a VB program will use errorless teaching methods, prompts that are later reduced, and discrete trial training. Behavior analysts Dr. Vincent Carbone, Dr. Mark Sundberg and Dr. James Partington have helped popularize this approach.
One drawback to ABA/VB: some school districts and insurance companies do not pay for it, and it can be expensive for parents to fund. If you decide to pay for it yourself, carefully research the credentials of anyone claiming to be an ABA or VB consultant or experienced therapist. A consultant should have, at a minimum, a master's degree in psychology or ABA, or should be closely supervised by someone who does. When hiring therapists, some families find volunteers or students willing to work for lower pay in order to gain experience with autism.

ABA and VB Web resources


I can't say enough about ABA. This has been the one treatment that has given Nick the most gains. It can also be done just about anywhere. We can (and HAVE!) walked around in stores labeling things he saw, he can do small chores around the house, and put things away. Often he actually listens better than his older brother! Nick went through 6 weeks of a free Verbal ABA program at the University of Washington. His therapist there got him to follow a point, look for things around the room, bring him things, etc. All of his therapists have been willing to change their styles on any given day to accommodate his ever-changing moods, as well as to prevent him from getting bored. A good therapist will do that. One of them would even bring in his guitar and play for Nick; which got Nick to interact with him in a more normal environment. If you would like more info on ABA, just click HERE.