The New Year

I know I said I would update this a little more regularly, and I apologize (yet again) for slacking on that front.  Life just sometimes gets ahead of you and you feel like you are drowning trying to catch up.
School is back in full swing now, which is great.  The boys are doing great.
Scott's therapists are starting to hang back and let him be more independent, which is fabulous.  I love that my little guy is able to participate in the social groups with little guidance now (he still has to have help staying focused from time to time).  He has started to officially rock climb at OT, which is great and he loves it.  I want to get him to go to some climbing classes this spring, I think it will be a great outlet for him.  Also, Scott has been talking a lot more lately.  He's always surprising me with new phrases, or incredibly long sentences.  It's amazing to see just how much he picks up on (he knows more about anatomy than I do, as he has been helping me with my homework this past week).

Scott climbing away during OT.

Aiden's doing great as well.  He started speech therapy again.  We just got done with all the evaluations this past week, so Tuesday I will sit down and talk with the therapist to find a plan of attack to help my big man out with social situations.  So far the therapist has said that Aiden has all the higher level thinking and intelligence, but he just seems to have issues organizing his thoughts.  This makes perfect sense because most of his conversations are jumbled around.  He has all the working mechanisms and what not, he just needs help with organizing them so he can have a fluid conversation.  This is why when he gets really excited about something, he starts flicking his fingers and he'll either get stuck on one part of it, or he'll start talking about five different parts of it.  But when he has the particular item or picture, or whatever he is talking about, in front of him, man can he tell you every detail about it.  So we are moving to have visuals for every thing.  We have started to have a visual schedule for him again, it has helped him with a little bit of his anger and frustration.  We also put up a visual "House Rules" poster, which will hopefully help with keeping Aiden from beating up on Scott.  But I am excited to see what other thoughts the speech therapist has to help him out.  I want everyone to see how amazing my big guy is.

Aiden being the stud he is and taking a selfie.

Last weekend we were able to take part in the pilot program for Wings For Autism here at SEATAC through the ARC of King County.  It was an amazing experience.  I truly loved every part of it.  The boys had fun and really did not have too many upsets (at least not as many as I was prepared for).  Scott still had an anxiety attack when walking up to the plane's door, but the first officer coaxed him on by letting him talk on the intercom.  Then the pilot was allowing the kids to go up to the flight deck and push buttons, Aiden made a couple of alarms go off.  Then we were "flew" around the runways for about 30 minutes to allow all the kiddos to hear what the engines sound like and everything.  It was one of the best experiences I have had.  I truly hope they are able to do this more often as I know several families will benefit from it.  I wish we were able to stay for the reception after we "landed" back at the gate, but Scott accidentally had some cookies that had egg in them, so we had to go get him to some benedryl before he had a full on reaction.

 Oh no! Aiden's flying!

 This was them eating the dreadful cookies with eggs (mommy didn't check the packaging :/)

 Learning about all the pretty buttons.

 Scott was playing with the visor with daddy.

 This is the man who coaxed Scott on the plane, I am very grateful for that.

 The boys were hushing each other.

This was them waiting patiently for time to board the plane.

This was soon after we realized those cookies had egg in them, can you see the bright red cheeks?

Fast forward to this past week, which has been a busy one.  The boys and I made some baked cotton balls that we had some fun smashing up all over the kitchen.  Then our beloved Mister Pinkerton got sick.  We found out that because our schedule has become increasingly busy and we are not home as much as we used to be, Pinkerton has become depressed.  Sphynx's are a very sociable breed, they love people and playing, they do not like being alone.  I thought Mister Boots would be enough, but it seems that old age is catching up to the poor pup and he has become rather cranky toward Pinkerton.  So we have started researching and contacting breeders, we are going to adopt another Sphynx!  Why another hairless cat? Because with Scott's allergies and lung issues, we do not want the cat fur to cause any issues, so another hairless kitty to the rescue for our very loved and pampered Mister Pinkerton.

Now you might be asking what does getting another cat have to do with sensory or autism.  Well it doesn't really, other than Pinkerton being Scott's best friend and the reason Scott does pretty much as well as he does.  Pinkerton is who helps Scott calm down when he has an anxiety attack or when he is scared because he's sick or coughing a lot.  Granted, Pinkerton does not always do this by choice, sometimes it Scott who grabs Pinkerton off the counter or the PS4 (Pinkerton's favorite heating pad), but he deals with it, no fuss no muss.  He is the best thing that has happened to Scott, and I will do whatever it takes to keep him a happy meowing little fella.

Pounding out some baked cotton balls.

See, best friends :)

Ball Pit Fun!!!!

This weekend has been a blast, we made a ball pit for the boys and it helped Aiden calm down quite a bit.  Aiden for the past few weeks has been overly emotional about anything and everything.  We are pretty sure it was due to the stress of not having much of a routine over the summer, seeing family and then having to say goodbye to them, and then school starting back up.  It's been a crazy last month for him, so I do not really blame him for being emotional.  But he had been asking for a ball pit, we used to have one, but took it down a while ago.  I thought, maybe he's trying to tell us what he needs, so a ball pit might be just what the doctor ordered.
So we thought we would go ahead and make a decent size one for them. Our previous ball pit was made with their old pack-n-play, but we decided now that they needed a proper ball pit, after all they are big boys now and it only seemed right they had a ball pit to fit their needs (sensory that is).
All this past week we worked on drawing up plans, we had decided to use PVC pipe as an exoskeleton and netting for the containment of the balls.  We had several sizes that we went through before deciding upon 4ft X 4ft X 2ft for the frame.

Here are the plans we used.

We decided it would just be easier to have the pipe cut all to the same length, it made for much easier figuring on our part anyways.  We then tried to figure out how many balls we needed and decided that 2300 seemed like a good enough number.  

This past Saturday we decided was the day to go ahead and make it.  

Eric worked on cutting the PVC while I worked on sewing the netting to fit.  My first attempt worked out well in terms of going together and containing the balls, however we didn't use a high enough quality netting and Scott ripped it.  So I ended up having to go back to Joann's and get some high pressure cargo netting, which so far has not ripped (fingers crossed).  What I did for this was I cut a piece that was a 4ft square and then four pieces that were 2ft by 4 ft for the sides.  I then attached the sides to the bottom and then to each other to form the fabric box.  I then made eight tabs for each side out of some scrap denim I had, I made those 4in wide by 5.25in (so the PVC will fit through them).  Then once I had those all attached to the sides I slide it on the PVC and we dumped all the balls back into to.  We also decided to make a ladder for the boys to get in and out of the ball pit all by them selves.  

And viola, ball pit fun!

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.

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.

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.

A mom's reflection on the past two years since diagnosis

This is my first time blogging, so bare with me please.

The past almost two years since Aiden has been diagnosed have been a rollercoaster ride. How did we handle getting the news of him being autistic, really well when you think about it. Our hearts did not break and our dreams were not shattered, but we did not jump for joy either. We just took it as another step. We knew something was going on, we were not naive or anything, we were just glad to have a definitive answer so that we could research and start the next step to our adventure. We started him in OT as soon as there was an opening, but then shortly afterwards we had to move to San Antonio, which was a huge change from everything we had known in Colorado Springs and before.

Did this move set us back, yes yes it did.

Were we discouraged, no, it just pushed us to make sure we got him into see the right people as soon as we got there. This then started our journey into the world of ABA therapy. It is a godsend, I personally believe it is what has helped Aiden out the most. All of his triumphs happened during ABA therapy first, and then only time would tell if he would generalize those skills to everyday life. Looking back now, a little over a year after he started ABA therapy, Aiden is a completely different child than he was back then. He is happier now, I get to see him smile all of the time almost.

Some would ask if I was ever worried about Scott also being on the spectrum. I would have to say that yes, the thought was always in the back of my mind, but I did not fret about it that often because at the time Scott was doing things that Aiden was still working on. Aiden had stopped walking when we first moved to SA, Scott started walking before Aiden started back up, and he was just nine months old at the time. That's really young to be walking. Scott hit all of his milestones well ahead of when he should have, most parents would be proud about that, and I was, but I was also secretly afraid, because that would also mean that he has farther to fall when he starts to regress.

We tried to keep that from happening, whenever one of Aiden's OT or ST's would give me some "homework" to work on with Aiden, I would use it for Scott to. It worked out great since they were both functioning at the same level. I would also work side by side with Aiden's ABA therapist for Scott, mainly so that I had something to do while she was at the house, but also because I was still slightly afraid for Scott. That is why I worked so hard on getting Scott to make eye contact, that is the one thing that Aiden did before Scott.

That is also what is biting us in the butt at the moment. Scott finally fell, and fall he did. Scott was doing so great, he was talking in one word sentences like he was suppose to, he would socialize with others, as long as Mommy was right there. The minute I would go out of the room, the screaming and tantrums would start and continue until I came back, no matter if it was just for five minutes of two hours. That's when I started to really get worried.

But when we had him evaluated at 18 months, he got the diagnosis of social anxiety. I could handle that, we were suppose to see a psychologist for him, but she never set up the appointments and would never return my calls. Then we got word we were moving again, just after we got told we would be staying in SA.

That was heartbreaking, but the move this time was not so bad. Aiden did not regress when we moved, we worked with him the whole way and he kept most of his skills. It did take us a little while longer this time to get his services started up, but up and going they are, and he is doing great. I absolutely love his ABA therapists, they are amazing women and I cannot think them enough for what they are giving us.

Scott on the other hand, stopped talking, he started having tantrums where he bangs his head on the floor, he hates loud noises and will bang his head on the wall when I vacuum or have the dishwasher on. He also started to make sure things are in lines, perfect neat lines, sorted by color, size, or number. That is why his favorite toys are trains, they stay in lines, they follow lines, that are perfect for his OCD.

But that's the problem, because he technically plays "appropriately" with them, when in reality, they allow him to not get upset every five minutes when Aiden knocks over his perfectly sorted blocks. Scott is also having a lot of sensory problems, too. He use to not care about the feel of his clothes or of his diapers, but now he will not let us come within five feet of him with a disposable diaper, so we switched to cloth and he lays down for us and lets us change him. He will not let us put clothes on him, but we have found that he loves Eric's socks, he wears them as his pants. I know it looks weird, but hey that's us, we're the weird family.

When we took Scott to see the Developmentalist on post, he said that his OCD like tendencies are typical two year old behavior, that his lack of speech is just there, that he is social enough, and that since he has great eye contact he's not worried until he's able to test Scott's cognitive abilities at the age of five.

I'm sorry, what did you say. That's right this doctor still seems to think that eye contact is still a defining symptom of Autism and that he has to be mentally retarded to be on the spectrum.

Sorry but no, over half of the children who are diagnosed on the spectrum have impeccable eye contact, because they were trained by their therapists and parents to have it. And most kids on the spectrum have an above average IQ, look at pretty much all of the famous ASDs. Heck meet Scott's older brother Aiden, who is three and knows his alphabet forwards, backwards, and inside out; who can count up to 30, can write his own name, knows all of his colors and shapes, knows just about every animal out there, and is starting to teach himself how to read. That's right I said teach himself, because neither me nor his therapist are working with him on that and I caught him the other day reading a few words out of his Dr Seuss book. His mind is truly amazing and anyone who still thinks that if someone is on the spectrum then they are mentally retarded, then they haven't met my son yet, and they won't know what hit them when they do.

So after that horrifying appointment with the developmentalist who still hasn't caught up with the new research on ASDs, we talked to Aiden's ABA therapists. They are all very concerned about Scott and they assured me that getting a second opinion is a very good idea. So we got the new referral and we got put on the 6-9 month waitlist to see the Seattle Autsim Clinic. We thought we were doing good with that, until 15 minutes after I got him on the waitlist we got a call saying there was a cancellation and we had an appointment within the week.

I don't think I have ever jumped for joy before, but I sure did that day, and that was only a week ago.

We went and saw their intake nurse and she assured us that Scott has some concerning areas, in all three diagnostic categories. She referred us to a research study that is looking at the link between autism and the attention to and control of emotions and social development. She felt they could get him in to be evaluated sooner than her clinic could, and they use the same psychologist as them for their evaluations.

She was right, Scott has his evaluation set for next week, I'm excited and scared for him. I know this will be a good thing because we can get him diagnosed and get him started in the therapies that will help him. Heck we already have therapists jumping over one another to work with him, we just need the diagnosis so that insurance will allow it.

I know that makes me sound like I am wanting Scott to be autistic, and its not that. I just know my child and I know that he needs ABA to help him with his anxieties and social problems. I'm just doing what I can to get him there. And I blame myself for him not being blatantly obviously there, because I did therapies with him, I worked with him to get him where he is. That has helped keep him from regressing any further than he has.

And when he gets the diagnosis, that will make my days even busier.

Right now I am having enough trouble juggling Aiden's OT, ST, 20 hours a week of ABA, plus him starting school this week. Then we are making weekly trips to Seattle for Scott for the research study and to get him diagnosed, and i will have to add Scott's ST, OT, and 20 hours of ABA onto that. Which alone will be making my head spin, let alone me trying to get my school work done, which reminds me, I start my bachelor's program the end of February.

This is going to be one incredibly crazy year.

....

This weekend has been a crazy one.

I should have added empathy to Aiden's strengths earlier.

Friday, I was sick, I had stuff coming out of everywhere and it wouldn't stop so Eric had to take me to the ER. While he was getting the boys dressed, seeing as it was past their bedtime when all this started, Aiden came and looked me right in the eye and said, "mommy sick, mommy get better, mommy okay." He was so worried about me, it made me cry, it made me okay with going to the hospital, I hate doctors (I'm okay with yelling at them about the boys but when it comes to myself, I just prefer not to see them, they never have any good news). After spending 4 hours in the ER and taking in 3 liters of fluids and who knows how many meds, they let me come home. I had at least stopped volcanoeing. Aiden was still worried when I got out to the car, he kept telling Eric that "mommy sick, mommy no feel good, mommy get better"

I was proud of my little guy, even if I did not feel well, I was proud.

Now both Aiden and Scott are sick with me. We were all watching Thomas the Train this evening on the couch. The fact that they both were laying on my for the entire length of the show says they were not feeling well. But Aiden showed his empathy yet again in worrying about Scott when he fell asleep. Aiden covered Scott up and told him to, "get better misser fisser" and then Aiden went and laid down and covered himself up and fell asleep. I couldn't be a prouder mom. My boys might not be conventional, or "normal," but really what is? My house looks like a therapist's dream home, as said by all of Aiden's ABA and visiting ABA therapists. But its mine and I wouldn't change it for the world.

First time blogger, long time stalker!

So, I keep following other people online, and I figured it was time to start my own blog.

I was trying to think about what to write about, and then I figured I would write about what I know. Autism and the craziness that surrounds it.

I may vent at times, I may give information that people don't agree with at times. Some of you may complain that this is America, and we have freedom of speech, and while that may be true in some places I reserve the right to remove/censor any post that I find offensive. That is the great part about being in charge of this blog.

This site will evolve over time, and hopefully will become a good resource for someone somewhere.

So, I asked my wife what to talk about, and she said talk about what's on your mind. 99% of the time that means I would be writing "nothing". Just ask her and she will tell you that!

So for now, I will just introduce myself, and my family.

My name is Eric, I am an LPN in the U.S. Army, and have been in for 8 years now. I have been married for 4 years now, and I have 2 sons ages 2 and 3. We have a dog, a cat, and 2 frogs (that have somehow survived the cat for the past 3 months). We live in Washington (the state not the district), and are going through our first winter here. I don't know what else to say this time around, so I will publish this post, and then hit the Xbox for a little fun before I go to bed!