Tuesday, July 21, 2015

The Initial Diagnosis

Tonight I had my online seminar for school.  It was just a normal seminar, going over various speech intervention methods, nothing out of the normal.  Then my instructor asked me a simple question that did not have a simple answer.  It was one that I honestly had not been asked before and I had not thought about what the answer would be in about 4 years.

She asked if I could share how it felt to get the autism diagnosis for my sons.

Such a simple question, but the answer was so much more complicated.

I have never talked about how I felt about either of the boys' diagnosis.  Eric has discussed it somewhat in a one of our first posts here, but I have not.

I realized in that moment that many families face the impending diagnosis all on their own.  No matter how prepared they may or may not be for that diagnosis, we all seem to go through a battery of emotions and feelings.  Some of us go through them in split seconds, some of us it takes a little longer to process them.  But we all seem to go through similar thoughts and feelings shortly after the diagnosis is given.

I feel that if I am able to contribute anything, it would be to let other families know that they are not alone in these feelings, as I know some carry guilt of how they felt in that moment.  I believe it can help to know that others feel the same or similar.

Taterbutt was diagnosed when he was the young age of 16 months.  We had noticed that he stopped being him in a way.  He stopped crawling.  He stopped talking.  He stopped interacting with us, other than screaming when we would touch him.  All he wanted to do all day was sit on the couch, spinning the wheels of a toy car, kicking his feet, flapping his hands, and grunting.  All the while being completely naked.  I could not put even a diaper on him without him screaming like it was burning him alive.

He was no longer the happy, smiling, talkative little guy we knew.  It was like something had taken him away.

So we did our research on what could be going on.  Both Eric and I had experience with autism and knew what some of the signs were.  So we researched through several different sources and kept coming to the same conclusion, Taterbutt had signs of autism.  We printed off the M-CHAT (modified checklist for autism in toddlers), filled it out, and brought it with us to his pediatrician.  The doctor did not think he had autism, he kept deflecting our concerns with, "he's just a late bloomer."  We pulled out the M-CHAT, and all of a sudden his tune changed.  He divulged that he honestly did not know much about autism, but with the score from the M-CHAT he had to agree that Taterbutt needed further assessment.  So, in went a referral for an assessment at the hospital from a developmental pediatrician.

The day finally came, only two weeks later but felt like a million years, for the assessment.  We walked into the room, a big room with lots of toys and distractions.  At first it was just us four, Eric, Taterbutt, Mister Fister, and myself.  Then in came the developmental pediatrician and occupational therapist.  Upon introductions, the developmental pediatrician (we'll go with Dr. S from here on out) told us that because of Taterbutt's age, we probably would not get a diagnosis today.

Four long hours later, with a hand that hurt from having to fill out multiple extremely long questionnaires, Dr. S finally gave us the results.  He told us that we needed to go to the book store and not only pick up books on autism, but also on sensory processing disorder, and oppositional defiant disorder because our Taterbutt has all three.

I knew that was coming, I knew it from the moment I stepped into that room.  But nothing could have prepared me for how I felt hearing the doctor tell us that our son had autism, let alone the other diagnoses accompanying it.

At first, I was happy.  We finally had a diagnosis, we could finally get him the intervention services he needed.  Then came the grief.  The grief over what my hopes and dreams had been for him.  He would not be a typical kid.  We would never be a typical family.  Then the thought of, "well, what about Scott?!"  Then came the thought, "what if I did this?"  I kept thinking, "if I did (insert anything) more or if I was a happier (I dealt with postpartum depression after having Mister Fister), would he be like this?"  I knew deep down that I could not have done anything to keep the diagnosis from happening, but those thoughts still plagued me for a few months after the diagnosis.  Even though I had those thoughts, I still jumped feet first into the world of autism and what to do for Taterbutt to help him.  We got him started in speech and OT, and eventually got the ball rolling for our insurance to cover ABA.  I even decided to go back to school for psychology in an attempt to better understand autism, and therefore Taterbutt.

After a few days, I stopped grieving for the child I never had.  Because, lets face it, Taterbutt is and always has been perfect.  I started seeing him in a new light, and therefore no longer allowed his meltdowns to affect me like they did before.  It broke me out of my own shell and gave me something to strive for.  Eric and I had been drifting apart at the time before the diagnosis.  But then in the aftermath, we found a new hope for each other.  We were not perfect again, we still are not, it is a process, but you keep fighting the good fight and you lean on each other.

Now I would not change anything.  Taterbutt is an amazing little guy.  So talkative, sometimes too much so, or too inappropriate (but hey, that's what entertains me throughout the day).  He loves wearing clothes, they just have to be of a particular fabric, which is fine and able to be done.  He loves to play with others, in fact he will seek them out now.  He does have quirks and is hard to get along with sometimes, and has multiple massive meltdowns a day still, but that is the joy of autism.

And I would not change it for anything.

Fast forward a year and a half from Taterbutt's diagnosis and we have the beginning of Mister Fisters.

Mister Fister did not have as many prominent signs of autism as Taterbutt did.  He did not regress like Taterbutt.  His hand flapping was more hand twisting.  He did not like clothes at all, but could tolerate diapers.  He was a colicky baby, so his meltdowns, we thought at first were just him being fussy*.  He was delayed in speech and language, as well as he did not have eye contact.  He hated people.  Literally hated people, unless you were Eric, Taterbutt, or myself.  Until Taterbutt's newest ABA therapist walked in, he would not warm up to anyone.  Then when she walked in, he immediately climbed in her lap while she was working with Taterbutt.  It surprised me as well as her and her BCBA.
*Side note - I was recently asked why Mister Fister is Mister Fister's nickname.  He was an incredibly colicky baby.  I literally always had to wear him, even in the shower, and that only lessened how much he screamed.  We use to call him Mister Fussbutt, but we figured Mister Fister is slightly more socially appropriate.

After a few months, he still had not warmed up to Taterbutt's other ABA therapist, or his own speech and OT therapists.  Finally, Taterbutt's BCBA asked us if we had concerns over Mister Fister.  We said yes, but that we were not for sure if his behaviors were learned from Taterbutt, or if that was literally just Mister Fister.  She confirmed our suspicions and told us that she had her own concerns over her observations of him.  When we brought hers and our own suspicions up to the boys' other therapists and doctors, they also stated they had some concerns as well.

So we made an appointment with Taterbutt's developmental pediatrician.  We had moved twice since Taterbutt was diagnosed, so this was not the same one who diagnosed him.

When the day of the appointment came.   We were more prepared than we were with Taterbutt's, if that can happen.  The developmental pediatrician did the regular battery of assessments.  Lots of questions and questionnaires for me, as well as observations and tasks for Mister Fister.  After the assessment, the doctor looked at me and said, "I believe he is autistic, but I would like to wait to diagnose him until he is 4 or 5 so I can test his IQ because I believe he is mentally handicapped."  I believe my mouth literally hung open.  I was speechless.  Not that I have anything against it if Mister Fister was mentally handicapped, but to wait 2 to 3 years to diagnose something like autism or a mental disability?  To me I was shocked a doctor would suggest that.  I thought it was better to have the diagnosis early so you can start intervention earlier, so the child can have a little bit better chance at life.

When I told all the boys' therapists what the doctor had said, they were all just as angry as I was.  They also urged me to get a second opinion.  And so we did.

When the day came for our intake appointment with the clinic we chose for our second opinion, we were nervous.  What if they said the same thing the other doctor did?  Should we really be so forward on wanting a diagnosis?  Thoughts like that just kept creeping into my mind the entire time.  Until the psychologist who was performing the intake assessment told me that the previous doctor was a crock.  That Mister Fister had several red flags for autism, but none for having a mental handicap; and even if he did, there are assessments for that at his age of just over 2 years old.  I felt relieved.  My concerns were being acknowledged and confirmed.

Just about a month later we had Mister Fisters official diagnosis, Autism.  Again, I felt relieved.  He was not learning behaviors from his brother.  Even though I believe he was and still is, but that is not the reason for his difficulties.  Both his and Taterbutt's brains process differently.  They are both at completely opposite ends of the spectrum.  They were then, and they are now.

I did not have the rush of feelings with Mister Fister's diagnosis as I did with Taterbutt's.  I believe that is because I had already dealt with all those emotions, I did not need to deal with them again.  Sure was I hoping that Mister Fister was neurotypical?  Kind of, I think everyone does.  Am I sort of glad that he is not?  Heck yes.  Life is so different with a child on the spectrum, in a way it is almost more magical.  It is more full of happiness at the little things and the big things.  You no longer take small steps for granted.  You celebrate more often.  Sure you tend to have more bad days as well, but you learn (very quickly) to not dwell on those.  Because next thing you know, your child is trying a new food, or putting a shirt on they never would have normally wore, or saying hi to a friend unprompted, or just giggling in the incredibly high pitched giggle that no one can match.

All in all, I am glad that neither of my boys are "typical." What does that mean anyways?  I have no clue.  I know that I was never a typical kid myself growing up.  Eric sure was not either judging by the stories I have been told.  Who, in all honesty, is typical anymore?

Friday, June 19, 2015

Long time no see

I realize that it has been over a year since the last post, and for that I am sorry.  I honestly did not know what to write about, we had not done anything different for the boys, and I did not think my opinion would matter anyways.  A few friends have been nagging me to start writing again, so here goes.

I have no clue where to start or what to even write about.  I am still unsure if anyone really wants to read anything I write, but I am good to give it a try.

This past year has been pretty hectic.  Taterbutt went into Kindergarten, Mister Fister went into his last year of preschool.  I stopped school, well I took a break from it.  I was stressed and I did not know if I wanted to keep going down the path I was heading down.  Now do not get me wrong, Special Education is a great place to be.  There needs to be more and more teachers who understand the special quirks of kiddos on the spectrum, as well as kiddos with other disabilities.  I just was unsure if I wanted to do that.  I felt overwhelmed and I just needed a break to clear my head and think.  I am happy to report that I am back in school, and I will get to that all in a minute.
Eric got brought down on orders and we moved this past March to Fort Bragg.  It was a huge move, I mean is any move less huge, but it was literally clear across the country.  We were all sad to leave the friends we had made the past almost 4 years at JBLM, but we knew it was time to go.
Because of the move, we re-homed our beloved Mister Boots, and it made us all incredibly sad.

 Luckily, he is in a great home with one of Mister Fister's amazing therapists and a good friend of ours.  We get updates about him all the time, and he looks incredibly happy.  The reason we decided to re-home him was, we were thinking about applying for a service dog for Mister Fister and Boots would not do well with a service dog.  Once we got the orders though, we knew that Boots would not be able to move with us because it would be too much stress on his little stressed out self.  We felt it would be kinder to him to make him a home with a familiar face and not move 3,000 miles when he hates cars.

The move has been an incredible thing for all of us.  We had a great trip where we got to see some new friends along the way and have a few adventures as well.  Eric is happier in his new job, just as stressed, but happier that he has a "regular" schedule.  We were able to get a slightly bigger house, which has been nice. The boys are no longer on top of each other, and they have plenty of room to run around in.  There is also a park right next to our housing quadplex and the boys play on it daily.  The new school the boys go to (or went to since it is summer vacation) is amazing.  The teachers they were placed with were incredible at figuring out strategies to work with the boys.
Taterbutt is so much happier here, he actually wants to go to school.  At the previous school, he was in a class of 22 kiddos and it was only one teacher with that many kiddos for a 3 hour day.  I disliked the fact that they would not place him in a full day kindergarten and they never listened to anything that I would say about Taterbutt.  He got depressed and angry.  He would be violent at home and school.  He never wanted to go to school, but could not verbalize what was going on.  Finally, the bus driver noticed that another kiddo was making fun of Taterbutt on the bus just before we moved.  See Taterbutt had been saying that he was a girl for about the past year.  At first we thought it was just pretend, but then we noticed the intensity that he held on to that belief.  He knows the difference between boys and girls, and we never had a problem letting him be who he was.  He would wear tutus and dresses, and he was happy, so we were happy to allow him to do that.  We found out after the move (once Taterbutt was calm enough he started talking to us about it) that his teacher would not let him play with any "girls" toys in the class room and dictated to him that he was a boy not a girl.  I was furious, but we had already moved and the damage had been done.  I just wish I would have been more vigilant when we noticed Taterbutt's aggressive mood swings, but the teachers assured us that everything was fine.  Oh, until it was not.  He ended up getting suspended from school about a month before we moved.  I ended up just pulling him out for the rest of the time once I was told why he was suspended:

  • He had attempted to kick a resource teacher.  
  • They told me that he did not want to sit for circle time in the classroom, but that he was participating, just not sitting down.  
  • The teacher asked him three times to sit, so he started screaming.  
  • The teacher then called the resource teacher in to remove him from class.  
  • The resource teacher then just went to grab him from behind without letting Taterbutt know that she was there, so Taterbutt kicked out.  
In my own opinion, any child would have freaked out at being grabbed from behind without knowledge, but that is just me.
Anyways, I am just glad that we are in a better school.  They are actually doing a behavior intervention plan for Taterbutt from the get go, unlike last school who never would when we asked.  They also accept that Taterbutt identifies as "a girl on the inside," in his own words; they do not abide by gender rules here, which is so nice for him.  

Mister Fister is also happy here.  He had great teachers back at JBLM, and he still talks about them every so often.  But they do field trips for preschool here, and he went to the zoo and got to feed a giraffe 3 times.  He talks about that all the time.  I do not think anything is going to trump that for a while.  Just as school was wrapping up, he got comfortable enough to show his teacher his true Mister Fister nature by running around and not being able to sit still or listen to directions.  It was fun when I started getting notes home that said he was easily distracted or he would not pay attention for anything.  On the upside, they already have great strategies to help with that for the fall when he is in Kindergarten.  Oh did I also mention that they are going to put him in Gen Ed as well? No, well he is going to be in a regular classroom with a few push in supports. I was ecstatic that they were willing to keep in in the classroom to work on all his goals.  Oh, also, did I forget to mention that the kindergarten here is full day? Yes, well it is and it is amazing.  All the kinder curriculum is hands on, their science for a month was growing butterflies.  It was all Taterbutt would talk about for months, and it was amazing.  

I was so afraid that the move would cause problems for both boys, but in all honesty, it has solved some.  Taterbutt still has aggressive outbursts, but they are fewer and farther between when they happen.  He is no longer depressed all the time, he constantly has a smile on his face.  He is able to verbalize more of his thoughts and feelings with us than he ever has.  Mister Fister is still the same Mister Fister, but he actually plays with big brother now.  He no longer hides from Taterbutt unless Taterbutt starts showing signs of getting upset.  They actually play like typical brothers, and it is amazing.  

So sometimes moves are scary and cause upsets to, well everything, but sometimes they can be for the better.  
The only one who did not have a great time with the move was Pinkerton.  

He hated the car rides.  Then when we got to the new house, he would just walk about meowing all the time, which if you know Pinkerton, he really did not meow that often.  We figured it was because he missed Mister Boots, so we started thinking we should look at getting a puppy.  We knew we wanted one that we could train as a support dog for Mr. Fister, but we wanted one that would still be a "travel size."  We looked into various breeds and were looking at breeders, when I thought I would check out some of the local shelters.  We knew we wanted a puppy and did not think I would be able to find a puppy that would fit what we were looking for.  I was wrong.  I was looking through one of the shelters' adoptable animals pages, and I found a litter of puppies that were Chinese Crested/Dachshund mix.  One of the puppies was hairless.  I knew what the temperament of Dachshund's were, my parents have a miniature one and I have been around several.  But I had not really been around Chinese Crested's before.  Once I looked up on several sites what the typical temperament for them is (protective of family, aloof and standoffish to strangers, playful, good with kids, good with other animals, but still have a strong protective streak), I thought that would be the perfect pup to bring into our family.  She would be protective of the boys and playful with them as well.  I thought she would be great to bring into our family and train as a support dog.  

We brought her home about a month ago, and she is prefect.  She is more of a Daddy's dog, but still leans to Mr. Fister already, its like she can sense that he needs her or something.  When we go to the park, she is right behind him and if he goes too far away, she barks at him and tries to herd him almost.  Her name is Hiney, and she gets along great with Pinkerton.  Most of our neighbors now know us as the weird people with a naked dog and naked cat.  And you know what, I'm good with that.   

As for school for myself, and Eric.  We both went back to school, right around move day (I know super smart of us, huh?).  Its been great though.  He is doing his associates in Health Care Management, and he actually likes his classes.  I am doing a post-bachelor's certificate in Autism Spectrum Disorders (I know, like I need a certificate in that, I live with two little boys on the spectrum).  I thought this would look better for when I want to get a job.  Through the program I have found that I am incredibly interested in the speech-language-communication side of things.  Therefore, I am changing my plan.  Instead of going for Psych, I am going to go back and do a degree in Speech Language Pathology.  This is not the first time I have thought about that.  Several of the boys' speech therapists back at JBLM would tell me that they thought I should go that route. I gave it barely a thought back then, but now that I have studied speech and communication a little more in depth, it is incredibly interesting to me and I want to learn more about it so I can help more kiddos.  Eric still has the same plan, and I think he is going to do great with it.  

Well, I think this just about brings everyone up to speed.  Hopefully I will not let another year go by without posting.  I hope to bring lots of ideas for what we do with the boys to hopefully help others out.  Please ask questions about anything.

Sunday, April 13, 2014

Spring has finally Sprung

This past month has been filled with sickness here at our house.  Mister Fister's immune system is not the best and as such with the weather getting warm and then cold and then warm and then cold again, it is horrible on his system.  He has been dealing with one viral infection after another, either that or one really extended infection.  But so far this week, he's been as healthy as anyone.

Other happenings this month.  I opened an Etsy shop for weighted blankets and other sensory items, as per the push of some really great friends.  I only have a few items listed, but that will be growing as I take time to take pictures of everything I've made for the boys.  This has been a new experience for me as I never really like to pedal my wares because I make them for the fun of it.  But we will see what the future brings for it I guess.

This week in the Cup of Autism Household:

It is finally 70 degrees here in the Pacific Northwest and it finally feels like winter is behind us.  I love spring time, there is so much that you can do without being cooped up in the house.  I love being outside, the fresh air and sun are my friends.  As for the boys, they love it too!  This past week when they come home from school we go for a bike ride, (well they bike, I run) then they get to play in the back yard until it is time for dinner, bath and bed.  And boy to they pass out.  I have never had both of them sleep so well, it's been a treat.

We've been looking into what our next project for the boys is going to be and have decided on two things.  We are going to make them new lofted beds.  This is partly because they need bed frames that fit their mattresses, and we just feel like making them.  But mostly its because it will give them more play space in their rooms as they've grown.  But first we are going to make them a new playhouse.  Right now they have a playhouse fashioned out of the two cardboard boxes that our couch came in.

We have made plans for a new two room playhouse out of PVC pipe (yes, we like to use PVC whenever we can because it's sturdy and cheap) and fabric walls, complete with doors and windows.  The wall dividing the rooms is going to be made from lycra, so the boys can push on it for resistance, or just so they can see who can push farther into the other's side.  
I cannot wait to get started on these projects, I can see how much fun they are going to be.  Now just to save up for them...  

Other thoughts we have been having involve what we are going to do over the summer with the boys.  We plan to get membership passes to the zoo and spend most of our time there or at the beach.  That will be both educational and sensory input for the boys (and myself, I love the beach!).  But we want to work on academics as well and still have school.  

Since we plan on possibly homeschooling Mister Taterbutt next year (it all depends on what happens at his end of year IEP meeting), we have been looking into what curriculum we will be using.  We plan to slowly introduce both Mister Taterbutt and Mister Fister to it over the summer.  This is where their loft beds will come in handy, we plan on building a desk into the underneath side for their school time.  

A Parting Warning

We have also learned to keep track of the moon's phases over the past few months.  It seems every time our boys act out of sorts for extended periods of time, it is either right before, right after, or during a full moon.  So now my home screen on my phone is a widget showing the phase of the moon, that way I can never be taken by surprise again.  Or at least that is the hope, I guess we will see how it works out with tomorrow being a full moon and the first lunar eclipse of the year.  Hope everyone is ready for it and enjoys the warming weather.

Wednesday, March 12, 2014

The Controversy War

I was scrolling through my facebook feed when I started seeing a lot of people bringing up some never-ending controversies: breast feeding vs formula feeding and vaccination vs natural immunity are the two I have seen most often.

I was curious and started reading all the comments and some of these people are educated on only one side.  Now I normally do not like bringing up controversy, I normally just keep my mouth shut because I do not feel adequately educated about all aspects of these controversies to have much of a public opinion on them.

So why am I bringing them up now? Good question, maybe I just cannot keep quiet any longer, I do not know; but some of the comments got under my skin.

On breast vs formula:
I see both sides of this argument.  Breast feeding does strengthen the bond between mama and baby, as well as helps to pass certain immunities to the baby.  Formula does help to give some nutrients, yes they might be chemically made but they are nutrients none the less, to the baby that might be lacking in the mother's milk or diet.  When I had Mister Taterbutt, I fully planned to breast feed, I went out and got all the nice cute little milk storage containers, an amazing pump, and all the bells and whistles for it.  I was going to breast feed my baby.  Two weeks after he was born, he was getting sick on my milk and had lost quite a bit of weight.  The doctor told me that my milk was making him sick, so I had to switch to formula.  Yes, I was devastated, but I knew in my heart that that was the only thing I could do to make him better.  So I switched him to formula and I watched our savings account go down quickly because formula is not cheap.  After months of trying to find the right formula for him, it is much harder than just going and picking out the first one you see, we had to give him the preemie non-allergenic formula.  It was the only one that he could keep down, but he quickly started gaining weight and was a healthy little boy.  Fast forward to when I had Mister Fister, I chose not to breast feed him from the get go.  I decided that the trouble we had with his brother, I was not going to put him through the same thing.  I am glad I made that decision because as it turned out, he could only have the lactose free formula, so he would not have been able to have my milk anyways.  So all this b****ing about which is better, neither is better, it is a personal decision, and a tough one at that, for the mother to make.  No one knows exactly what goes into that decision for the mother as it is different for each person and situation.  I just think that some of these overly opinionated women, and some men, need to get off their high horse about breast feeding, because it is not always the best choice, and sometimes is not even a choice, for the baby and they need to stop chastising anyone who uses formula.  There is no point to the bickering and it only makes that mother feel even worse about one of the toughest decisions she has had to make.

On vaccinating vs not:
Again, I can see both sides to this controversy and I really do not see the point in all the bickering going on around it.  It is a personal decision that the family makes.  Yes, some vaccines have been found to have harmful effects, and yes some do not even prevent the disease they are vaccinated against.  That is a gamble that all families who do vaccinate take, but one that happens fairly seldom and usually there are other reasons behind the harmful effects.  But I see the reason behind wanting a child to grow his or her own immunity.  That is the healthy way, but when doing so, the parents must keep a close eye on any symptoms, as measles and mumps are treatable diseases if caught early, but yes, they can cause death if not treated in a timely manner.  But the only people who will be hurt are those who chose not to vaccinate and I am sure they understand that risk; so they do not need that thrown in their faces by the pro-vaccinators.  I have chosen to vaccinate my children, well Mister Taterbutt anyways.  He can have the vaccines, and has never had a reaction to them, so he is going to get vaccinated.  I was vaccinated when I was a child and I turned out just fine, so why shouldn't he?  As for Mister Fister, well he has been vaccinated all the way up to his 2 year vaccines.  He had a horrible reaction to one of the vaccines, his leg swelled up and he could not move it.  He was in so much pain for the three days it was like that.  After that we decided that since the doctor's office did not keep on file which shots he got in what leg to pin point the cause, we are not vaccinating him any more.  Luckily, this past fall we found out what was probably the cause, Scott is allergic to eggs.  Several of the vaccines, including the flu vaccine and the MMR vaccine, which were two of the vaccines he received the day he had that horrible reaction.  Mister Fister is our allergy kiddo, we are still continuing to find more and more items that he is allergic to and so we have decided to not vaccinate him.  So we have one child who is getting vaccines, and another who is not; where do we fit into this controversy?  Sure we could continue to give Mister Fister the vaccines that do not contain any of his known allergies, but we have decided to not do that as he already has several health issues. He is pumped full of medications on a daily basis, he gets two to three breathing treatments daily, sometimes more if it is a bad day; he gets Benedryl and Claritin on a daily basis as well as if he goes into anaphylaxis he gets his epi pen; and because of his nebulizer treatments causing him to bounce off the walls, we have to give him melatonin at night just so he gets the little bit of sleep that he gets, normally 6-8 hours, which is very little for a four year old.  This is not to mention the times when he is sick and he is on several different antibiotics.  We have to carry around a miniature doctors bag anytime we go out with Mister Fister because we have to carry just about everything mentioned above, plus we have to take his pulse ox periodically throughout the day.  Because of all these chemicals that are being put in his body, we have decided to not put any more in by vaccinating him, not because we think it causes autism, Mister Taterbutt was diagnosed before he got the one vaccine that is thought to have caused it; but because he has enough going on we do not need to stress him any more.  Plus we take every precaution the doctor tells us to so if he gets sick with one of these preventable diseases, well we'll catch it early enough for treatment anyways.  So I see both sides of the argument and I do not see the point behind all this vaccines cause this, vaccines hurt the children more than they help, or non vaccinators are hurting their child by making them susceptible to diseases.

Both of these controversies are incredibly intimate decisions that a family makes on their own.  It is their personal decision and one they make for themselves and no one can make it for them.  I do not see the point behind all the name calling and forcing of opinions on others.  There is no point to it all other than making each other feel horrible about nothing that will make a difference.  Breast feeding is not any better than formula feeding, and vice versa. Vaccination is a personal decision and one that a parent makes because they do what they feel is best for their child and again, vice versa for those who choose not to vaccinate.  To me it makes no difference; I am not going to stop my friends from coming over because they are breast feeding their children and I do not want to see that, or because they are formula feeding and I do not agree with them, that's ridiculous.  And again on the vaccinations, I have one child who is and one who is not, and I am not going to stop my friends and ask them if their child is or is not vaccinated before I let them hang out with us.  I think this whole public shaming of one decision or the other is complete buttocks.  To each their own decision, and let it be at that.

Saturday, February 1, 2014

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 :)

Monday, December 30, 2013

DIY Climbing Wall

I thought I would add in how we made the climbing wall as a separate post.
The climbing wall is a success.  The boys love it!
We did not have any plans for it, we just kind of winged it.  Well I say we, we had a little bit of help in the form of the boys' Gigi and Popo supplying the grips and gift cards that supplied the rest (those were meant for us to us for us, but of course we used them on the boys) and a friend of ours helping Eric hand saw and put together the frame.

This is the finished project. What is shown is a 4'X8' sheet of plywood, we thought our ceilings were 8' tall but they are more like 7-1/2'.  I'm okay with that because now it can be slanted really easily for the boys and Aiden cannot knocked it down on himself of others.  The frame behind this front piece of plywood is four 2"X4"s and a 2"X6".  Eric cut the 2"X4"s to have a box behind the plywood.  He has three running the length of the plywood, two on the edges and one down the middle.  Then he cut the remaining 2"X4"to fit on the shorter edges.  The 2"X6" is on the back of this at the top and bottom along the shorter 2"X4"s.  We had planned to use these to attach the climbing wall to the wall, but ended up not needing them.  The grips are bolted on the plywood in a random array, we did not look up any route plans for them or anything.  Then we decided the other half of the climbing wall could use a rope, so that's what it got.  We had some smaller rope that we braided and knotted so the boys can climb.  The boys needed something to help them grip when they climbed up the rope, so we thought we would add some wooden slats for their feet.  We ended up having some in the shed that worked great, so we added those.  Now behind all of the grips and the slats we have some rubber anti-slip mats that are for carpets, but it helps with little toes on smooth plywood, too.  Oh and we have some bells at the top in the middle, one of Scott's ABA therapists made that suggestion, and its great, they love ringing them.
 Scott climbs all the way up to the top to ring the bells, and then he slides down and does it again.
Aiden, or as he is calling himself today, Ballerina loves climbing, but he is a little more unsure of the heights.  I'm sure he'll be tackling this wall in no time and then maybe we'll look into some climbing gym memberships for these guys.
And yes the boys are not the only ones enjoying the climbing wall.  Mister Pinkerton sure loves the height of it (and the fact he can escape the dog).

Holiday Fun!!!

I hope everyone's holidays were enjoyable!
We had a good time this holiday season.  This is the first year we actually celebrated Christmas.  Eric usually worked on the holidays so we always did something on a different day.  The boys also did not like wrapping paper so we would always unwrap all their gifts from others the night before and just have them sitting under the tree for them to play with the next morning.  But this year, Aiden started to talk about Santa and Eric had Christmas Eve and Christmas day off.  So we thought we would actually do Christmas this year.
This was what the boys woke up to in the morning!
The problem was that the boys slept in until 10am.
Eric and I were extremely excited, but the boys slept in and we kept getting anxious.  

When the boys did wake, Aiden was excited.  He had huge eyes when we told him Santa came and could not wait to open gifts. Scott on the other hand kept saying "no."  I unwrapped all his gifts and he finally started saying something other than "no," and played with his new toys.   
Both boys loved the climbing wall we made, with the help from Gigi and Popo (who bought the grips and supplied us with the gift cards to get the rest).  
All in all our holiday was a success, not nearly as nerve wracking as I had thought it would be.  The boys have even handled the break from school and normal schedules really well. 
I hope everyone else's holidays were a success as well, I know these breaks and times can be incredibly stressful, but we all do the best we can.  I would be lying if I said we did not have moments were we were pushed past our breaking points, we just try to focus on what is the best for the boys and us as a family and we make it through.

Wednesday, December 4, 2013

Chicken Chicken Duck

I really need to set alarms for updating this.  Life kind of happens and I forget to write about it.

The ball pit has been going really great for the boys.  And on the plus side, its been holding up, I have not needed to redo any part of it, yay!!!

So what has been going on since the fun of making the ball pit?  Quite a bit; we found out that Scott is allergic to blueberries, eggs, and chicken; Aiden has had a little bit of cardiac drama; and we have been looking into private schools for the boys.

Allergies are no fun for anyone, let alone a 4 year old who breaks out in hives when he eats his favorite breakfast food, scrambled eggs.  Did you know that allergies and allergic reactions can be acquired.  I mean you can become allergic to something that you have been eating every day.  I did not know that, but one day while Scott was eating his breakfast of scrambled eggs, he broke out into hives.  Luckily, Eric was there and immediately gave him some benedryl so the reaction was kept to a minimum.  We tried him tentatively on some chicken, because we were unsure how he would react to that, I mean the eggs do turn into chicken, right?  Well he broke out in a rash with that as well.  So Scott cannot have chicken or eggs, which are two of his favorite foods. We also found out that Scott cannot have blueberries, by him eating a few thinking they were grapes and again breaking out into hives.
After talking to Scott's doctor we made an appointment at an allergy clinic to get him officially tested, as well as to talk to the allergist about anything else we should maybe keep an eye out for. They tested him for the basics: nuts, wheat, soy, dairy, eggs, etc.  He had a 3 out of 4 reaction to eggs, so definitely highly allergic to these little things.  He cannot eat anything that has any eggs in them and we have to carry eli pens with us just in case he has a reaction.  Problem is, eggs are in everything, and even if I make our own food at home I have to find substitutes for them.  I have tried flax seeds and tofu, but the flax seeds make anything I bake flat and the tofu, well good luck trying to get Scott to eat anything with that in there.  I felt horrible for Scott, he could not have his two favorite foods anymore (eggs and chicken nuggets)  and we were having to change a lot of what he did eat.  I mean I had to change his cereal, his granola bars, his crackers, his raviolis; like I said eggs are in everything. So Eric and I began researching other eggs and if they are conducive to people with egg allergies.  We found a place here in Tacoma that we can get duck eggs from, although they are a bit on the pricey side, but I am willing to try anything and everything I can to help make this adjustment better for the little guy.  I talked to the allergist and since Scott is not allergic to duck and they are from two different animals, he said we could try Scott on duck eggs.
Let me tell you, I was skeptical at first.  I thought duck eggs would taste differently, I mean chicken and duck taste completely different.  But to my surprise, they taste just about the same when scrambled, duck eggs are just a bit creamier.  Now when baking with them, duck eggs are a bit firmer, which is fine, most of the time my recipes need that.  The problem is that duck eggs come in different sizes.  In one dozen we can have some that are almost triple the size of a regular egg or some that are right at the same size, so I have to measure them out, I use 1/4 cup equalling one egg in a recipe.  Once we figured all this out, we were golden, Scott can have his scrambled eggs or waffles in the morning again, and I can bake muffins, cookies, pasta, etc for his lunch and suppers.  We have been doing this for about a month now and things are great.  Scott almost does not miss his chicken nuggets, I still need to find a substitute for these when he asks.

Now on to Aiden.  About a month ago we were called from his teacher saying that Aiden had a seizure at school.  This was odd as he had just been discharged from his neurologist in August for having no seizure activity.  We made an appointment with her anyways to get it checked out as what the teacher and nurse described was unlike any of the seizures Aiden has had in the past.  They said that he all of a sudden started saying he was tired and cold during lunch and then he started of flopping around for about 30 seconds and then took a bite of his lunch and was fine.  They took his temperature and it was normal so it was not a febrile type episode, we just did not know what it was.  He ended up sleeping for 4 hours afterwards and had the hiccups for about 48 hours afterwards as well.
When we met with the neurologist the very next day, she looked at him and then took our account of everything.  She was certain it was not a seizure, thankfully, but that she thought it was a cardiac episode.  Okay, so we went from what's going on with Aiden's brain to his brain is fine, but there's something wrong with his heart in about 24 hours.  It made this Mama very anxious and worried.  We made an appointment with a cardiologist as soon as we could.  They did an EKG and it turned out his heart was fine, but that the cardiologist said it did sound like it was a cardiac episode.  She mentioned that we could do more tests, a longer EKG (Aiden had barely tolerated the five minute one they had already done) or an echo.  She also mentioned that the episode could very well be an anomaly and might never happen again.  We decided that we already subjected him to enough and that if the cardiologist did not think it was worth stressing Aiden out over more tests, then we were not going to do them.  I still wish we knew what happened that day, but at the same time am thankful that Aiden is healthy on all other accounts and I hope it will never happen again.

Shortly after all of this, we had the boys' birthdays.  We decided to have some friends over this year to celebrate.  I was incredibly nervous, I have never held a party before so I was afraid that it was going to end up being boring for everyone or something like that.  I mean its not like we have a ball pit or anything that kids would love playing in, right?  I think it ended going pretty well.  The boys had a blast, as did all our friends.  When we asked the boys what they wanted Scott said no, he's in that stage at the moment, but Aiden said he wanted a blue tutu.

He gets to pick a dress up outfit to wear when he goes potty at school, he teacher sent a picture of his favorite one home, it happens to be a pink tutu.

Aiden also says that he is a ballerina and will twirl around the house, it is really cute.  I did make him his very own blue tutu, and he wears it everyday when he has been good.  Next month we are also looking at signing him up for ballet classes at the Tacoma City Ballet School.  I think we did good for his birthday.  Scott got a Captain America shield blanket I made, I made one for Aiden as well (a big stop sign).

Scott also got a brand new lycra swing/hammock that he plays trapeze artist on all day everyday.  We are also looking into sending our little monkey (AKA Scott) to climbing school at one of the rock gyms in the area.

Now for the private schools.  We all hear of the kids on the spectrum getting lost in the public school system, or of the kids that are placed in a special education program who just get left there and no one actually teaches them, we are afraid of this happening to both boys.  I think every parent is.  Aiden is so advanced academically for his age, I mean he reads encyclopedias for fun, and Scott is reading already and so smart, it takes him two weeks to learn any think that we throw at him.  They are both incredibly intelligent, and Aiden's teacher knows that and is wonderful with him, but even she has mentioned her fear of him getting placed in the special ed kindergarten next year after his first behavior issue in the gen ed kinder.  Then Scott, who's teacher had a little bit of an issue with him wearing his under armor to school and I do not feel is challenging Scott.  I feel next year Scott will be bored and either act out, which is definitely not him, or will regress because he is not getting challenged.  So we have been searching out private schools in the area, and I think we have found the two that the boys will go to next year.  Yes, I said two.  Aiden and Scott have completely different learning styles and needs, they need two different learning environments, therefore, two different schools for them.  Now in terms of affording them, tuition assistance is the only way.  Some of the schools we had looked at charge $20-40 thousand a year for tuition, for their kindergarten classes, let alone for the remaining 12 years of school.  Wow, we do not even make that in a year, so we are definitely looking into financial aid and anything that can help us afford these schools next year.

So the past few months have been quite the whirlwind of emotions and stress.  I promise to try and keep up with this so my next posts will not be quite as long.

Oh the boys made some thankful placemats at school for Thanksgiving.  To brighten everyone's day up, here is Scott's:
It's of course not Mommy or Daddy, its his favorite naked cat:
I have to admit, these two are attached to one another.

Monday, September 9, 2013

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!

Tuesday, August 20, 2013

Having Some Fun

My parents and younger brother came to visit us this past week.  It was really sad to see them go, the boys and I had so much fun with them here.  We went shopping (a lot), to the zoo, to the beach, and all in all had a good time.  My little brother had his 21st birthday while they were here.  Dad and Eric took him out to properly celebrate it, and they did (with video evidence and all).  I just hope they all have safe travels on the flight back and they had just as much fun as we did.
Here are some pictures (I stole them from my mom's camera) of our trip to the zoo:
We were petting the baby stingrays (which are amazingly slimy).

He loved seeing the birds with Gigi and Popo.

They both had fun playing in the sprinklers and getting soaked.

This is how we role.

Oh before I forget to, I should update everyone on Aiden's neurology appointment.  We saw his neurologist the Wednesday my family flew in.  His EEG came back showing some slowing of normal activity, which is consistent with him being on the spectrum.  There was no seizure activity that they found, so his brain is normal for him being autistic.  That's good news!!! Yay, no more seizure meds!!!! But she looked again at his arms and legs (for over 9 months now he has had no reflexes and has been complaining of his arms and legs hurting).  She determined that he has hypotonia and hyperflexia, in lay man's terms, he has no muscle tone, in fact she said he has the muscle mass of an infant, and he is super flexible, he can bend his thumb all the way down to touch his elbow of the same arm and twist his legs into positions that they should never twist into.  Because of that we have to now go back and see his regular pediatrician and have tests run because she said this could be caused by something in his bones, joints, muscles, or nerves.  So we are kind of back at square one, but we have a good team of doctors and we are very proactive about getting things done, so hopefully we will have answers in no time.  
Now for some pictures from the beach (again, I stole these off of my mom's camera)
Aiden did not want to get in the water for the longest time while we were there.

Scott on the other hand is a little fishy, just like his mama.

He kept running into the water (which was ice cold) and having a blast.

I helped him doggy paddle for a little bit, he's going to be an amazing swimmer.

Aiden had some Gigi time playing in the rocks.

But he did eventually make it out to the water.

Eric did not get to do too much with us as he had to work overnights, even though he asked for some time off.  But it is what it is, they needed him on the ward so thats where he had to be.  
We did get to be silly a lot of the time too.
Getting kisses from my Tater Butt!

And from my Mister Fister!

We could not take serious pictures, it was making Mom mad.

All in all, this was the funnest week we have had in a long time.  It has worn us all out, but in a good way.  Tomorrow we get to go back to non-stop running around like chickens with our heads cut off.