Saturday, March 31, 2012

1 in 88, and the vaccine controversy begins (again)!

The CDC released their new Autism incidence numbers a few days ago, and when I posted the news to FaceBook I received an interesting question. Do I believe the increase is related to vaccinations?

The short answer is maybe, the long answer... well here it goes.

The vaccine controversy began with a 1998 study by Andrew Wakefield M.D. There are a lot of people who say that he was biased, and that his results were skewed as a result of undisclosed financial ties to a pharmaceutical company. After hearing all of the hype I had to read the study myself and find out what was so controversial, and I found out that the study actually was not wrong.

The study said "We did not prove an association between measles, mumps, and rubella vaccine and the syndrome described."

Can I prove that there wasn't some kind of bias? No. Can I prove that vaccines cause Autism? No.

I do, however, believe that vaccines are an important thing to look at with our children. I believe that Autism is a combination of genetics, and environmental triggers. Genetically you have to be predisposed to Autism before an environmental trigger pushes you beyond the threshold that causes you to begin showing a developmental delay.

With any child it is important to view the risks vs the benefits of vaccination. I fully believe that it is more important to ensure that my child remains healthy than to risk having them get an illness that could cause them to die. An important side effect of my child being vaccinated is that I don't have to worry about illnesses that are passed around by parents who refuse to vaccinate their children.

Do I mourn the "loss" of my child? No, and here is why, my child is the same loving child that they were before the diagnosis. I just have a word to explain their quirks now. Autism is not a disease that needs to be cured, it is not a mental disorder as some would have you believe, and it is not a tragedy. Autism is a way of explaining why my child would prefer a trampoline over a million dollars, why my child would prefer a night at home over a concert, why my child would prefer to flap instead of clap, but most importantly it is why my child is who they are.

So, back to the original question. Do I believe that vaccines cause Autism? At this point I don't know. All I do know is it doesn't matter to me, because I love my boys, and they love me.

Friday, March 23, 2012

Scott's Evaluation Report

Yesterday afternoon was spent in Seattle at the Seattle Children's Autism Clinic getting Scott's full diagnostic evaluation report from the psychologist there.  Nothing too surprising.  He has several good traits, but some concerning traits as well. 
The one thing that the she mentioned to us was that she stressed that Scott get placed in a class specific to autistic children and their needs.  We are trying to do our research on finding classes and/or schools like that in the area.  I have to thank Aiden's ABA therapist, she is totally awesome to begin with but she is helping us with this search.  We might be able to get him to go to a neighboring school district because she works there as their autism specialist (that would be awesome!).  I just hope that they will take him since we live out of district and cannot break our lease for a year and a half.  If not then we are doing our research on private schools, but there are not many close by and they are expensive. 
Another thing that the psychologist mentioned was looking into an autism service dog for him because he wanders, has no sense of danger, and has some behaviors the dog could help disrupt (his lining up of toys).  So I am and I have found a few agencies, some that even help with fundraising, but we have not decided on that just yet. 
So we have a few things that we need to look into and decide upon, and decide soon. 
On to happier news, everything has went through with ECHO and Scott should hopefully start ABA therapy within the next few weeks once we get the intake scheduled and what not.  I cannot wait, I am too excited about seeing how well he takes to it.  He already has a connection with his soon to be therapist, he interacts with her when he runs the opposite way of everyone else who enters into our house. I believe he is going to do great with everything.

Wednesday, March 21, 2012

Why do I support HR 2288 Caring for Military Kids with Autism Act?

I haven't posted in awhile. Cinnamon has been updating everyone with her posts, but I saw this question posted on a Facebook page that I follow, so I figured it was time for me to explain why we ask people to get involved and to get active in the CMKAA cause.

Cinnamon and I got married by the justice of the peace a few weeks before I deployed to Afghanistan with the thought that we would save money during the deployment for a "real" wedding when I got back. We figured that while I was gone she would have access to base for anything that might need to be done in terms of wonderful Army paperwork, and that she would have health benefits in case she got sick or injured while I was gone.

Two weeks after I got to Afghanistan I was on Skype, and she told me something that would change all of our mid-tour trip to Ireland plans. She said "Babe, I'm pregnant." FRAGO... Midtour leave is now a trip to get home to see my child be born.

As time came closer for me to get home I learned that we were having a boy, and we talked about names, and settled on Aiden James. Aiden being a traditional Irish name, and James after the two friends we chose to have be his Godfathers.

I ended up getting home on November 24th, and on November 26th my wife gave birth to the cutest boy I had ever met. I ended up seeing him for the first two weeks of his life, and then I had to go back to finish the deployment.

I finally got home from my deployment, and then 7 days later when my wife was acting strange I told her to take a pregnancy test. Results were positive. We were having another child!

Shortly after that I was reassigned from Ft. Campbell to Ft. Carson. A few months later, on November 25th, we met our second son, Scott Conor. Once again I was the proud dad with the most beautiful baby boy ever.

Five months later, on April 16th, 2010, we were given another change of mission when a Developmental Pediatrician at Memorial Children's Hospital in Colorado Springs told us that Aiden had Autism. I had no idea what Autism was. I had never met anyone Autistic that I knew of, all I knew was something was going on with my child, and I finally had a name that I could start doing some research on. Boy was that research depressing.

1 in 110 children will be diagnosed with Autism, 1 in 75 boys, 1 in 88 Military children, 3 times more likely if you have a sibling diagnosed. No known cause, no known cure. As the signs in the forest always say "Abandon hope all ye who enter here." Instead of laying down and taking it though we decided to fight.

I re-enlisted and asked to go to M6 school, the Army LPN program. I was accepted, so we ended up shipping off to Ft. Sam Houston, where we met one of the first guiding lights in our journey. Ms. Sherri Sharp at Brooke Army Medical Center. Sherri is the head of the Speech Language Pathology program, and also is the point of contact for BAMC's Autism Team. She gave us the head start that we needed, and put us in touch with some resources in the community.

Aiden started ABA, OT, and ST within a month of us arriving at BAMC. He had received ST and OT while we were in Colorado, but he hadn't been making progress, and at the time we didn't know about ECHO.

Aiden had been in ST and OT for 4 months, and had made no progress when we moved to Texas. After 3 months of ABA we heard meaningful sounds. They weren't full words yet, but there was the beginning of communication.

Lets fast forward at this point. I finished M6 school, and received PCS orders to Madigan Army Medical Center, Joint Base Lewis - McChord Washington. I think with all the press JBLM has had lately I don't need to explain where that is.

When we arrived in WA we had to start services all over again. I can't tell you how frustrating it is to have to explain to the doctor exactly what referrals are needed because they don't know. We have been here for over 7 months now, and still have a referral that is sitting in no mans land because the doctor didn't want to put the referral in. (More on that later).

I'm going to jump back and forth for a quick second here. Scott was concerning us while we were in TX, and we were seen by a developmentalist at BAMC, and they said they wanted to follow Scott for a little while because although there were areas that were starting to show concern, there were no red flags or flashing lights saying look here we got another one!  We were okay with that, then we got to Ft. Lewis, and we saw another developmentalist who said that although he felt like Scott was on the spectrum, he would not diagnose until Scott was at least 4 or 5 and could have cognitive testing done. Are you kidding me? I'm asking if my child is Autistic, not Mentally Retarded (sorry for having to use the "R-word", but it is the current medical term).

We asked for a second opinion, and we were sent to The Seattle Children's Hospital Autism Center. They told us that our initial intake appointment would be about 6 to 9 months out, and we asked if we could be put on a wait list for if someone cancelled. We were told that wasn't a problem. 15-20 minutes later we were called and told someone cancelled and we could have that slot if we wanted it!

So, Aiden was in ABA, ST, and OT, and now we had to drive to Seattle for appointments for Scott, and I still have to go to work. We only have one car, we definitely have a very tight schedule.

The Autism Team nurse who we talked to said that it could take us another 3 months before we saw the psychologist for the evaluation, but that we also needed to look into a thing called the “SPARCS” Study (Physiology of Attention and Regulation in Children with ASD) and see if we qualified. We would receive the exact same exams, by the exact same psychologist, we would just be seen quicker because the deadline for the study was approaching. A few weeks later we were back in Seattle participating in the study. On February 3rd we finally received the letter we had been expecting, and dreading... Scott was diagnosed with Autism.

All of this has been said to answer one question. Why do I support CMKAA? I guess you have seen the long answer. The short answer is this, my children, and thousands of children like them, are stuck in an archaic insurance system that does not provide the benefits they need, nor the benefits they deserve. We are stuck with doctors who don't specialize in Autism, who don't know the special medical needs of our children, and who are unable to educate themselves due to the time constraints put on them by the system. We are stuck with therapy that is deemed medically necessary by 29 states, and the Surgeon Generals of the Army and Navy, but is called an "educational benefit" by TriCare. We are stuck fighting a system that is not in compliance with other federal mandates, but is overlooked because once again it is the Soldier or Sailor or Airman or Marine who must give up everything for their country and in return be given nothing. I for one am sick of that system, and it is time to fight back. Congress is on notice right now, and there are many of us who will be heard. I support CMKAA because all children deserve to have a fighting chance.

Saturday, March 17, 2012

An Awesome Week

So this week went rather well.  (One of the better ones we have had)
It started off with both boys in amazing moods, Aiden sensory investigative, which is amazing, and Scott incredibly talkative, which I love hearing his voice.
Now if we talk about Aiden at school, it was not a great week.  He only went Monday and Tuesday due to having appointments on Thursday and Friday.  Monday his teacher called me to let me know that, "it was the worst day we have had with him."  But I have to admit he was doing amazing when he was at home, so I am not sure what was going on at school to make him act out like he was.  Hopefully it was just what had to give because he was having a great time at home.
I feel bad because Aiden acted out during ABA on Tuesday, Wednesday, and Thursday, but was great during it on Friday so one of his therapists did not get to see him on his best days.
Friday we had a GI appointment to try to figure out his diarrhea/constipation cycles and to see if we could get some allergy testing so we could see if that had anything to do with it. Just Dada and Aiden went while Mister Scott and Mama had one on one time.  But the GI doc did not want to do allergy testing and said Aiden has toddler diarrhea and that he might grow out of it at the age of five or six.  I do not agree (I get that the doc went to school for this and what not) I just do not feel that that is all there is to it.  How the heck am I suppose to potty train him when he is either exploding out of his butt or not able to go period.  Let's just say we are looking into finding another doc who might be a bit more willing to figure out a way to stop this vicious cycle.
Scott stayed talkative all week long.  He was trying new words and everything.  He even told me, "I wuv oo"  last night when I put him down to bed.
I even found the key to turning this:
 Into him helping me in the kitchen:
 Now dont make a fuss when I tell you the secret...It's coffee.  He wanted me coffee Friday morning, so I let him have half of my cup in his sippy (it had a bit of sugar and milk in it and by that time it was ice cold too).  He loved it and tried to get me to let him have more.  Before the coffee, he was having trouble focusing on one thing, he was everywhere, and lining all of his toys up like a pro.  The after the coffee, much calmer, did not mind that the dog knocked his row of cars all over the place, and was helping me make lunch and supper.
Now to the best part of the week: Scott's ECHO paperwork went through!!!!
That is amazing, I am so glad it did not take as long as they had originally told us it would.
I let the lead ABA therapist know and she sent in the referral to get it started and hopefully late next week we can get his intake done.  Yay!!!
Think that was a great ending to the week, add this, we got Scott's referral for his oral function therapy in the mail yesterday too. Amazing!! Now he can start both of his therapies.
To celebrate, we had dinner, a movie, and new toys for the boys.
Yes, I know, I spoil the boys.  But, honestly, who can blame me for these cute little guys and all the hard work they do?

Monday, March 12, 2012

A Good Day in Sensory World

I should be writing a paper that is due today, but I feel like procrastinating and letting everyone know how amazing my boys are one more time.
The boys have been having a great weekend, both of them have been in good moods, which rarely happens at the same time, let alone for three days in a row.
Aiden has been a lot more responsive when asking him questions, and also a lot more attentive to activities all weekend and today.  Scott has been a ton more communicative, he is saying more words, that are actual words, not just a syllable, and he's been bright eyed and hungry for new foods.
So today, Scott was pointing and wanting something up in our manipulatives organizer and I finally figured it out, he wanted the polymers.  This is goop, gems, water beads, and silly squares.  So I mixed him up some of the goopy gems to play with.

They went everywhere, but it was fun.
We took them over to let Aiden play with them...And I apologize for not warning his ABA therapist...Aiden actually loved them, again they went every too.  But he handled it much better than the last time we tried him with them.
Last time Aiden barely touched the goop and freaked out asking for wipes and would not go anywhere near it again. So he did incredibly well.
His ABA therapist and I were talking about how he has a similar reaction to shaving cream every time his OT tries it.  She suggested we try it...Aiden again loved it!! It was amazing.  We deduced that it might be the difference in shaving cream, the one his OT uses comes out as the huge white foaminess that it is, whereas the one Eric uses, as Aiden's ABA therapist stated, "is the good stuff," it comes out as a blue gel that as Aiden plays with it grows to the white foaminess.

Aiden all covered in shaving cream
Scott also got in on the fun.
Pictures courtesy of Aiden's wonderful ABA therapist.
My house still smells like shaving cream, but I can deal with that because at least its clean.
I just love days like these because it lets me know how truly amazing both my boys are, and how we are incredibly lucky to have such great therapists (and friends) working with them on a daily basis.
This has been a good day in the sensory world for both my little guys..

Sunday, March 11, 2012

Quiet/Busy Book

What do you do on a Saturday morning-afternoon and into Sunday when your husband is home and there are no other plans being made?

Make a quiet book of course!!!

We researched blogs and for ideas and many of them were made for cloth books, I did not have any fabric, which is a feat because I am usually making new weighted blankets for the boys. So we redid some of the ideas we were seeing, and added in some new things that would make our boys very happy, for use with a paper busy book.
Hours later, with our printer ink almost depleted, all of our card stock gone, and our over abundance of velcro dots diminished; we have two completed quiet books and the boys love them.

Here is a break down (with pictures) of what we did, as well as a download of our templates that
we used and links to the various websites we got some of our ideas off of.

Step 1 - The Covers
We used Microsoft PowerPoint for pretty much most of this.

Step 2 - The pages

This one is "Feed the Bear" We cut out and colored the bear, then we found some food pictures and cut a few of those out and velcro dotted everything so that the boys had to feed the bear. We also left the bear's bow tie off so the boys can put that on him as well.

This one the boys have to match the whole fruit to the half fruit. It's a bit tricky for Scott so we made a double of it for him so he matches the whole fruit with the whole fruit and the half fruit with the half fruit, but we kept it lined up so he knows which half fruit goes with which whole fruit.

This is the rocket ship. The boys have to build the rocket ship so it can blast off to the moon.

This is Scott's favorite. They have to put the leaves on the tree. There is also a little blue bird that they can put on there too.

Here is the "Build the Ice Cream Cone" page. The boys have to build it from biggest to littlest scoop.

The "Mister Potatohead" Page. Both the boys love mixing him up, especially Scott:

Here is Scott's creation.
Then we have the barn page, which looks like this, but the boys get to open the barn doors and put a horse, pig, and cow inside the barn.

Like so.
Then we made a mail box where the boys have to put the flag on to show there is mail. Then we made 3-d envelopes that the boy's can open and inside there is a letter from Mama and Dada. This is Aiden's from Dada
And this is Scott's from Mama

We made a laptop for Aiden, he loves grabbing the calendar down and acting like he is typing by using the squares for the days as keys. I cut out all of the keys and taped them to the keyboard of this "computer" before I laminated it so that it has a bit of texture to it when he types.

We made a house that the boys have to put the windows and door on.

And we made a finish the pattern page.

We also have the traditional "Match the Shapes" page.

Here we did a different take on matching colors. We have them match shapes made of various shades of a color to the base color

We then have a "Tic-Tac-Tow" page they can play.
Then we have a counting page. This one is Scott's, he loves Pinkerton, our Sphynx so we made it a "Count the Pinkertons" page. For Aiden we made count the sheep because sheep are one of his favorite animals.
We could not make a quiet book without a stoplight for Aiden, but on his we did not put the lights for him to match too, he just has the black box and he has to put the lights in order on it, and he is very fast at doing so.

We of course had to put some trains in here for Scott

And Cars for Aiden. Both the trains and the cars just have random velcro dots along them so the boys can play with moving them along the tracks and roads.

I know that's a lot of pages. We realized that when we were binding the books with rings, but it is worth it because the boys love them. We also made a "ribbon," aka laminated card stock to wrap around and close the book. Also if you are wondering if we keep all the pieces on the pages they are used for, the answer is no. On the backs of each page we put more velcro dots to hold the pieces for the next page. This way when the book is open on the table, the boys can see the pieces for the page they are on easily and transfer to where they belong.

The boys have been enjoying their books all day today, and even took them to bed with them!

Here are the weblinks to some of the sites we got our templates and inspiration off of:

Monday, March 5, 2012

Results from Scott's evaluation

I just realized I never officially updated everyone on Scott's research study. We completed the study as of last Friday. I have to say it was an experience. We also got the letter we knew was coming two weeks ago. This is the letter that stated from the lead psychologist on the study, Scott Ruhstorfer fits criteria for Autism Spectrum Disorder. First thought should have been that's great because now we can get all of the lovely EFMP and ECHO paperwork turned in and get his referrals going. But no, that was not my first thought, I knew this was coming, but I was still a bit upset, I guess I was doing the bad thing and hanging on with a little bit of hope that it was all in my head. After a few minutes of staring at the paper with a blank mind, I called Eric and we got everything set up to see Scott's PCM so she could sign the EFMP paperwork. But that was horrible to do. First we made the appointment but when we got there, they were two hours behind and asked us to leave the paperwork there that the doctor would have it filled out by the afternoon. Okay, no biggy, so we did that and I came back the next afternoon to pick it up, not so fast, they lost the paperwork. I made a big huff about it because we had filled it all out to where the doctor just needed to put her John Hancock on it. So after about an hour of them looking, they found it, on the doctor's desk. Really?! It was right where it was suppose to be sitting? Oh well, so the doctor decided that she needed to refill it all out, because us having done this a couple of times for Aiden, she did not think we had it filled out correctly. So two days later and after she called us asking a million questions that she could have answered herself had she taken the time to look at Scott's medical record which is on the computer right in front of her, she had it signed for us to pick up. We looked over it all, and she ended up signing the copy we gave her in the first place....Grrrr....Doctors. But anyways, so we got that turned in after a week, and we got the papers last Wednesday saying it has been finalized. So we call Aiden's ECHO case manager, because he will evidently be Scott's too, and we faxed all of Scott's stuff to them. So now we are just waiting the three-five days they said it would take for it to be finalized so they can put in the referral for Scott's ABA therapy. I'm excited, we already know who his therapist is going to be and it seems that everything is going to work out perfectly. I'm just anxious to get him started so we can start working on a form of communication for him.

Saturday, March 3, 2012

Sensory stuff

We just finished our house makeover into a therapy house for the boys and I wanted to share it with everyone.
We changed the living room into a therapy room and made the underside of the boys loft beds into sensory calming tents for them.
Here is one view of our livingroom. Here is their trampoline, Aiden uses this to help calm down when he is overly stimulated and Scott uses it to help energize himself. We also have the exercise ball which is used for a variety of activities from balancing on it, to using it to complete tasks, to pushing it through the resistance tunnel. We have Scott's rocker, which he uses for calming, and man can he rock that thing. Next to that we have the resistance tunnel, we connected it to the wall that way it can be handled a bit easier with only one parent home (which is most of the time). Then we have the crash pad, which is made out of a kingsize duvet cover with pillow stuffing, foam, and bean bag pellets to give the boys a sensory experience just from laying on it. Then we have the rock wall, which has helped keep Scott from climbing on everything that he shouldn't as well as helping Aiden learn to climb (we are planning on making a bigger one in the near future once Aiden gets the hang of it).
Next to the rock wall we have hanging basket full of all sort of toys and items for the boys to play with, the ones above the light table have manipulatives for them in it as well as art supplies. Then we have the light table, which we contemplated making with LED light ropes and a Sterlite container, but we decided to splurge and buy a professional one instead. The two jars on the table are full of cut up pipecleaners that the boys use the magnetic wands to manuever around. Then there is also one of Aiden's favorite toys, Bert the farting hippo.
Here is a close up of the light table with Scott's favorite translucent legos on it.
On the other side of the living room we have the egg chair we got from Ikea, it is wonderful for Aiden's stimming, and is such a sensory experience when the cocoon is closed and someone spins you, I can see why the boys love it. We made our own ball pit from one of the boys' old pack-n-plays that we weren't using and two huge bags of balls from Toys R Us (we are also going to get at least another bag before too long). Then more hanging baskets and a toy box full of soft play items such as weighted firemen, EMT, and Police vests; pretend play items like vegetable and fruit baskets (also from Ikea), ect.
On the wall dividing the kitchen from the living room we have a dry erase board and a favorite, a magnetic board. We cut an easel from Ikea in half and mounted the dry erase board, then we got an oil drip pan from Lowes which makes for a great magnetic workstation.
Next to that we have the other half of the easel to make the chalkboard. Then we hung a cuddle swing, also from Ikea, in the doorway to the bathroom (it was the only place we could get it to be supported).
In the doorway to the boys' room we have Scott's favorite, the trapeze bar (both the swing and the trapeze bar can be interchanged with each other and we have another cuddle swing if they both are needing one and a regular toddler swing).
Inside the boys' room we have their sensory calming tents under neath their beds. This is Aiden's complete with a monkey beanbag, a soft sheepskin rug from Ikea, tons of fidgets, light up toys, an LED rope light, and a fiber optic "tree" as Aiden calls it. They also have resonance pillows (not pictured) that I made by making pockets for speakers in the back of a pillow case and hooking their Ipod shuffles to it.
Also in Aiden's sensory tent is his lycra "stoplight" swing. I say stoplight swing because it is made out of three layers of lycra from JoAnn fabrics, red, yellow, and green. Aiden is obsessed with stoplights, so we made it to be a stoplight itself.
Here is Scott's tent, much the same as Aiden's with the exception of a puppy beanbag chair and different fidgets that are his favorites.
Scott also has a lycra swing in his tent, made with three different shades of blue, the color blue has a very calming affect on him. Both boys also have what is called a Jiggy Piggy, this is Scott loves to cuddle with in his swing. A Jiggy Piggy is a vibrating pig, it helps with over stimulation.
Here is a close up of how we attatched the lycra fabric to the boys' bed slats underneath their beds. We took some chain and cut it down to fit snuggly around a slat and then knotted the lycra fabric to the links on the chain. I will note that we made more than just one knot per piece of fabric, and we had to make sure we got the knots as tight as humanly possible or else the fabric would just slide right on through.
This is my little Mister Fister, AKA Scott, enjoying the his sensory tent.