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!!

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 ;)

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.

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.

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.

 

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.

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.....

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.

Treatments for Autism.....Pt.3

Treatment Approaches

• Applied Behavioral Analysis (ABA)
• DIR Method (Floortime)
• Miller Method
• Relationship Development Intervention
• Son-Rise
• TEACCH Program

Clinical Therapies
 

• Speech and Language Therapy
• Augmentative Communication
• Picture Exchange Communication
• American Sign Language
• Occupational Therapy
• Sensory Integration Therapy
• Physical Therapy

Complementary Therapies
 

• Animal Therapy
• Auditory Integration Therapy
• Auditory Processing Therapy
• Craniosacral Therapy
• Music Therapy
• Play Therapy
• Recreational Therapy
• Social Stories
• Social Skills
• Vision Therapy

Biomedical Treatments
 

• General Biomedical Information
• Allergy
• Diet
• Immune Function
• Medications
• Metabolism
• Secretin
• Vitamins
  

Family Support
 

• Respite
• Support groups and Web sites
• Psychological Services
• List Servs
• Seminar and Conference Services

Service Delivery Models
 

• Early intervention
• Educational programming
• Homeschooling
• Inclusion in “mainstream” or “regular” education

 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

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 Communicating 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 Interaction for families who've moved beyond the basics. FloortimeDVD Training Series. Set 3: Symbolic and Logical Thinking 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.

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's 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

• AutismWeb's ABA and VB Directory of teaching materials.
• Large organizations that set up and supervise home and group-based intensive behavioral intervention programs include the Lovaas Institute for Early Intervention, the Center for Autism and Related Disorders and the Carbone Clinic (VB). Check your area for smaller, regional programs.
• Articles, Reports, and Opinion Pieces Describing Applied Behavior Analysis (ABA) and the Research That Supports It

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.

CBS News video on the Ipad...

Nick LOVES his Ipad! It has been the single most motivating thing that has been used during his therapy sessions. He loves the picture app where he can turn the camera to himself and look at himself in real time. He goes on youtube and looks at videos of zambonis. In therapy he writes letters on it and draws.
WARNING: You might need some tissues!

What's UP Doc??

Our new nightly medicine requirements. 1 syringe of children's Advil for pain(blue), 1 syringe of Zyrtec to open up nasal passages (clear), and 1 syringe of Amoxicillin to clear infection (pink). He actually takes the amoxicillin 2x a day, and the Advil as needed for pain. His Risperdal is broken up into two doses as well-half a pill in the morning, and half a pill in the evening. All of this right now makes Nick a happy camper.

Wednesday morning was our doctor appointment. Mike stayed home with Nick because honestly, he was not fit to go anywhere, and CERTAINLY not back to Madigan! His BCBA (I will call her A) went with me. A was there to get insight on what the doc prescribed we do as far as Nick's behavior, and to help bring up anything that his therapists had noticed that we had not. At this time we were still thinking it was simply that the Risperdal had quit working. Boy, were we wrong!

Doc listened to everything we described and looked at Nick's MRI (which had been done a whole MONTH prior). One thing stood out. Nick's sinuses had looked "junky" even then. Based on everything we described, and his MRI, he put the pieces together. Nick had sinusitis. His Self-injury and aggression was simply his way of dealing with the intense pain he was in. It all started to make sense. How his behavior had steadily gotten worse over time, how he no longer enjoyed going places, it was hard to get him to eat, etc. All he wanted to do was lay in his room and be alone. Which, in the end, even that was not much of a reprieve.

Now that we are finally getting to the root of the problem, his behavior is slowly returning to normal. I say slowly because once the pain meds wear off, we are right back to where we started. We have had to really stay on top of that too. Once he has relief, he goes back to being happy. His appetite has returned with a vengeance, and he is once again wanting to go outside and play in the sprinkler! He is also using his words more. Amazingly, through all that pain, he would still stop thrashing around to get up to use the potty. I am hopeful that this sinus infection will clear and he can once again be happy and pain free.

Christmas in July!!

That is surely what it has felt like around here the past two days. We finally got the second installment of our income taxes (we did not file for 2008-I was deployed at the time) last week and the very first thing we bought was an IPAD. I can't tell you how long I have wanted this little thing. It has been in our lives for a mere 24 hours and it is already making its mark. Let me just show you.

This is Nick having fun with one of the apps on his IPAD. On this one he has to put the puzzle pieces together to make the full picture. It is rather fool proof, as the piece will only go in one spot. The computer says the name of the sea animal, then lets him put the pieces in.

More of the same game.

This is a writing/spelling app in which he has to trace each letter in order to spell out the word. Once all the letters are traced, a picture of the object shows up in the middle of the screen and the screen shows the word in his letters that he 'wrote'. We are still getting the hang of this game and right now requires a lot of hand over hand.

This is the same app; but instead of a word, it is just one letter.

This is a simple drawing app that he really likes.

I can't even describe how helpful this little gem has been. It really does make things so much easier! I can now create a visual schedule in a matter of seconds!

Not to mention the ABA applications it has. Nick can have fun playing the 'games' but while he is playing he is having to match pictures with words, use his point, and is learning new words in the process. We have been working full steam on the communication apps. Did I mention this can double as an assistive communication device??!! The limits seem to be endless right now. He beamed when he realized he can use this to communicate what he wants with us. That was a smile I soon won't forget. Personally, if you have a very verbally limited child with autism, I would highly recommend getting one of these. The ease of operation is what gets me. In order to make a story board all I have to do is open the specific application, and choose what I need. There is a camera installed in the IPAD and if I want to take a specific picture, I take the picture, and it is immediately available to use in the story board. VERY SIMPLE!!

While Nick got the IPAD, Michael was able to get an IPOD which he had been begging for a long time. He is 12 now, and just like any other 12 yr old he likes to listen to his music. He is quite happy with it. He also got a new hockey helmet because his other one was worn out from last season and was starting to hurt his head. We are all doing great and are enjoying the warmer weather finally! It took a while to get here, but now it is here! Don't know what we will do for the 4th yet, but it will probably involve fireworks at some point. I have the next two weeks off so I am going to try and get Nick scheduled for his MRI and blood draw during that time. The EEG is scheduled for the 26th. Other than that, a pretty un-eventful month. Hope everyone has a great 4th of July!!

At a Crossroad of Some Sort

These big decisions are never easy. The really BIG one we have been contemplating the last few weeks is where to move after I retire? This has almost been discussed at some points every day. Where do we want to go?? This question was easier to answer until I found out that Nick will no longer get his ABA covered by TriCare when I retire. He is covered right now under the Extended Care Health Option (ECHO), but that benefit is not extended to retirees. So that information threw off our whole plan, and we have had to come up with a newer plan. We looked up states that required health insurers to cover autism treatments. (Washington was not one of those states) Reading through all the legal/medical terms got to be quite depressing. Most of those inferred that through loop holes, companies could deny you coverage. They placed catastrophic caps on dollar amounts, or individuals had to be a certain age etc. So, what did I do? I posed a question on one of my autism bulletin boards that I am a member of.

If you could, where would you choose to live? Two states seemed to come up the most often. One of those was a state that we had not even considered. PENNSYLVANIA. It seems that state is one of the best for autism services and coverage. I got in touch with someone who currently lives in PA and she confirmed what they were saying is true. We started looking more intensely at other things like housing, schools, and yes, we had to look at hockey. All items there were good. I started looking at jobs on line and found a bunch of jobs are available with the VA. So, why am I still so conflicted??

Our families reside in the South East. Not the North East. It would be awesome to have family near us to help out. But how much would that cost Nick? He is my family too. I have also seen the effects of a school that just does not 'get it'. It was horrible. He was left to stare out windows all day simply because it was 'easier'. I don't want that to happen again. He lost an entire year at that hell hole.

So, I will pose the question now to all out there in Blog Land with kids on the spectrum.

If you had your pick, where would you live?

Dare To Complain.....

I came across something on the internet this week that really pissed me off. It was basically someone saying that kids with disabilities(especially mental...like severe autism) do not belong in a mainstream school. They were wondering WHY don't they go to a "Special School" just for them? Why don't us parents take care of them at home all day instead of sending them to school...afterall, what are they getting out of being there? And that they were 'jealous' because we get free things like ipads, and swimming pools for our disabled darlings and that it is all rainbows and skittles.

So, let me get this straight. Certain people of the general public are JEALOUS of me because they THINK we get free stuff??

How about the fact that I have a 7yr old who still shits his pants? Jealous of THAT?
How about the fact that I have a 7r old who takes an anti-psychotic to control his aggression and self-injury??
Jealous of the "free" babysitting I get 4 days a week? Yea, ok, those "babysitters" are his therapists. And those two hours are two hours that Nick is gainfully occupied by someone else, and we get a break from doing damage control.
Jealous of the constant phone calls from the school saying that your son has once again bit himself and is bleeding.
Jealous of the fact that our house has holes in the walls, doors falling off hinges, cabinets broken, and locks/gates up everywhere to keep your 7yr old from escaping?
Jealous of the numerous doctor appointments we have had to discuss things from eating to seizures?
Jealous that we have spent hundreds of dollars on dietary supplements for things like increasing his speech, aiding his digestion, removing toxins, only to have none of it work?
Jealous of the fact that we are in a constant state of 'readiness' due to Nick's changing moods?
How about the fact that his door obsession is now in like the third or fourth YEAR? The cabinets at his school have been tied together, and our kitchen is completely gated off to him. Otherwise he will do nothing but slam cabinets ALL DAY. He has slammed his bedroom door so hard the doorknob went through the wall.
Or how about that he has chipped away at the paint and drywall in certain areas of the house? The fact that he ripped up the baseboards in our last house?

So, SCREW YOU! Go ahead and complain about all the 'freebies' we supposedly get. Because in reality, all the 'freebies' are coming at a huge expense. OUR CHILD.

News of the Day......

Not only have we seen his smile making more appearances around here the last couple of weeks, but there have been steadily less TEETH in that smile! Last night I was finally able to pull out that pesky loose top tooth. This ranks up there with those gummy smiles he would give as a baby. I am loving these gap toothed smiles even more :)

Merry Christmas!!!

Somedays you just need to play a little 'hookie'! The boys have been out of school since last Friday, but Nick has had therapy for the last few days. It is a juggle that I still find myself torn between. He can always use therapy, and he has made a lot of progess with it being 5 days a week now. So, during breaks such as this from school, I am always eager to sign him up for more hours to fill in the void. It helps control his anxiety during the break because we still have a schedule. But, somedays he just needs to be a kid. Today was one of those days. He had been going through 'zamboni withdrawals' for the last few weeks.With his busy therapy schedule, he is not able to come to hockey practice during the week to see the zamboni clean the ice. Today I called his afternoon therapist and told her we would like to take a day off. Nick needed a day just to be a kid. And it was hard to turn him down since our 'conversation' this morning revolved around the zamboni...
We went skating today around 2pm and both kiddos now fly across the ice. We all had a great time. Nick had a huge smile on his face. It was so worth the funk he is in right now for that hour! Yes, we are dealing with the fallout from all the upheaval today. Anytime we change his schedule, no matter how small, he gets a little funky. He is in his room now hanging out and calming himself down. It will be a low key night. We are getting ready to eat dinner, then it is bath time, and then bed time for Nick. After he is in bed, I am going to bake some holiday cookies with Michael. Nick does not get much out of baking yet, so it will be just me and Michael. Gives us something to do together. Tomorrow our big plans are to go see the holiday lights at the park and wait for Santa. Maybe watch some more holiday movies, and of course wait for the fire engines to come through the neighborhood and pass out candy. Hope everyone has a Merry Christmas!

A Look into Nick's World...and Ours...

There is really no other way to describe exactly how Nick's autism is. You just have to see it for yourself. This is what happens daily in our house. Thanks to Risperidone, you won't see the OTHER side of Nick that was known to happen a few months ago. This is the more 'controllable' Nick...although I can use that term a little LOOSELY, because his behaviors are not really screaming 'controllable'. We have therapists at our house five-six days a week working with him. For three hours after school. Bascially, he goes to six hours of school-gets home at 3pm. At 3:30 he starts working with either Tracy, Scott, or Stephanie...depending on the day. He also gets Hippotherapy, Speech therapy, and Occupational therapy. This is the reality of his disability. People think he is a normal six year old because of his outward appearance. Then he starts to do some of his vocal stims in public. Or he runs away to slam doors, opens gas tanks on cars, hits things..etc. Then they assume it is just a "discipline problem" and that they know how to "fix" it. They stare. This is autism. Please, if you see a kid like this in a store or another place, be nice. Be understanding. Do NOT presume that the kid you see is "normal". This is a side of autism that is not shown on any talk show, and does not come with those success stories about 'recovery'.