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.  

Summer Time Fun

So again I need to apologize for waiting too long to update everyone.

Honestly not much has changed in our little world these past few months.  Just a bunch of regular appointments and tests for the boys.  Tonight, I am with Aiden at Seattle Children's for his 24-hour EEG.  So far he has done amazing and the staff here is truly wonderful with him.  So far he has not had an episode :( but hopefully since he is now asleep, they can still get some good information for what they need/want.

Aiden's legs have been causing him pain in the past few weeks.  We really do not know what is going on there, but we plan on talking to his neurologist at his appointment next month about it.  We truly do not know what has happened, he just starts saying they hurt and does not want to walk or do anything where he has to stand in the afternoons on most days.

Both boys are handling summer really well.  We try to keep them as busy as possible, which probably helps.  Scott now knows all the planets in order and how many moons they have, Mercury is his favorite by the way.  Aiden is learning the bones of the body. They are going to be so smart when they start PreK again in the fall.

We are going tomorrow, when we get home from the hospital, to sign Scott up for CYSS and then for fall soccer on base.  This will be great for him, he needs something to help with his extra energy and he has been showing increasing interest in soccer.  This makes this Mama proud, soccer's by far my favorite sport.  I love doing drills with Scott in the back yard, he may be tiny but he is one fast little guy.

In a little under a month my Mom, Dad, and little brother (who is actually much taller than me) are coming to visit us.  I really cannot wait, I have missed all of my family so this will be so nice to see them.  We are taking time off from everything for the week they are here so we can actually spend time with them and so they can actually feel like they are on vacation and not just being pushed around all the boys' appointments and stuff.

Eric has switched to days at the hospital so he is now actually home a little bit more, if that makes any sense.  He works the same hours, of course, but when he has his days off, they can actually be days off with the boys and I, rather than him spending them sleeping still.  It has been really nice because now the boys are able to spend quality time with Dada.

My classes are going by so fast, I have five more and then I get my Bachelor's in February.  I cannot wait!  Then I have to decide if I am going to continue on with my Master's in Psychology online or physically attend college (my preferred way of learning).  I have also been tossing around the idea of doing a dual Master's program with Psychology and Speech Language Pathology, but I have not fully decided yet.  I guess I need to make a decision so I can make all the arrangements, February really is not that far away.

Well until next time, and I promise I will try to update sooner rather than later :)

Ramblings of a mad woman

So I just realized that October was the last time I updated the blog, oops sorry guys.

Things have been pretty busy since the move: Aiden switched schools; Scott started school; we switched ABA companies; the boys' yearly and 6 month appointments with all their specialists; Aiden having 12 ear infections now, four of which have perforated his ears; allergy testing, hearing testing, and ENT appointments for Aiden; new asthma diagnosis for Scott along with a nebulizer regimen daily; sleep study, opthalmology, and 24 hour EEG for Aiden to determine his seizures and whether or not he has a neuromuscular disorder.

That right there is a lot of changes and stuff going on, and it's enough to make my head swim just thinking about it all.  We are almost done with it all now, hopefully, unless doctor's order new tests after all of these.

The results:

Aiden switched schools and his new teacher is great and is great with him.  We are currently talking to her about him switching to Kindergarten next year, we are positive he is academically ready for is.  He is currently reading at a 1st grade level, not on demand, but by himself.  He is also doing addition and subtraction.  Aiden's newest thing is talking to us all about kinetic energy; where in the world did he learn about that, I do not know but he sure has an amazing grasp of it and the concept of potential energy.  He is one smart cookie and I, along with his therapists, am afraid that if he stays in PreK next year for the third year, as his birthday is late, then he will start to regress out of boredom.  Plus if he does go to kindergarten next year, he will be following about half of his class there and so he will have some friends already there to help with the social piece of it.

Scott is doing amazing in school.  He did switch teachers in February, but he new teacher is just as great as his previous one.  Scott does things there that I still cannot get him to do here.  But the main thing is he has fun, everyday when he sees the bus he beats me to the door and is already up the steps and on the bus before I can get Aiden out the door.  He is such a happy little guy and I am glad that he enjoys school.

ABA, in December we took a little bit of a hiatus from our previous ABA company.  Nothing was wrong with that company, they are great people, we just did not feel it was working for the boys anymore, as they kind of started to level things off and were no longer progressing at the time.  So we took about a month off from therapy and searched other companies.   We found the company we currently are getting services through and they are amazing.  They do a hybrid clinic, part in home therapy, part in clinic therapy to help carry over skills and add in some extra social pieces.  They both have two therapist and all of them are perfect for the boys.  They no longer try to shut the door on their therapists when they come over and they get excited when we go to the clinic.  It is great and the boys picked up where they left off and are mastering programs daily.

Aiden has been having a hard couple of months with his ears now.  His tubes fell out about 6 or 7 months ago and since then his ear infections have started coming back and coming more and more frequently.  By February he had had 8 ear infections, and then he started to have them where they would perforate his ear drum.  He has had two double ear infections that perforated both ear drums, and then just two weeks ago he had one that perfed his left ear drum and now he has one that perfed his right ear drum.  We have already seen his ENT in March about them all, he ordered the allergy testing, hearing testing, and sleep study to determine if it is sinus pressure, allergies, or something else that is causing them that we could control.  The allergy testing told us that Aiden is allergic to all types of grass and to most chemically made preservatives.  But this does not account for the mass of ear infections, however, it does answer some of his GI and behavior issues.  We have started all of us on a natural/organic preservative free diet and so far it seems to be helping with his GI problems, but we have not even been on it a full week until tomorrow.  Aiden's hearing test showed that he has some hearing loss in both his ears and that he has a constant clear fluid behind his left ear drum that does not allow it to move and his right ear drum is sunken in and is not functioning correctly.  The audiologist believes that putting ear tubes back in might help to resolve his hearing loss, but that he will likely need to continue to have ear tubes in place his whole life.  This I can deal with.  But then there's the thought of if the tubes do not help the hearing loss, then we will I guess look at alternatives, I have to remind myself to take it one step at a time and not get ahead of myself with worry.  Tonight is Aiden's sleep study, so we shall see how that goes.  Then tomorrow, we see the ENT again for the check up after all the testing to, hopefully, get the referral for his ear tubes and maybe get the surgery date.  I just want my little Tater Bug to feel better and not have constant ear pain.

Scott's asthma has not been getting better.  We have been asking his pulmonologist for a nebulizer because Scott is deathly afraid of his inhaler, I mean more than just screaming while we put the mask on him.  Scott screams bloody murder and will claw, bite, do whatever it takes to get as far away from the inhaler as he can, and then when we do get ahold of him, usually Eric holds him down while I have to place the mask over his face all the while we get to see the terror in his eyes.  Yeah we did that a grand total of twice before we just decided we did not want to terrorize our child.  His pulmonologist gave us a chewable medication for Scott's controller med, but said we should still work with Scott on becoming okay with the inhaler for emergencies.  I get that he will always need an emergency inhaler, and we do try, but we cannot traumatize him anymore over it.  Well his controller med does not do squat, which I get he's not inhaling it so it is not going to be as effective.  Scott started having bad coughing fits, when he gets a cold, most of the time when the first cough starts within 24 hours Scott has a full blown URI or bronchitis and sometimes it will even be pneumonia by the time we get in to see the doc the next day.  So we took him in and saw a brand new doc, and thankfully it was still just a head cold at the time, but the doc looked at his history and asked why we don't use inhaler meds for his controller med anymore.  Needless to say, I had brought his inhaler with me so I just took it out and showed the doc Scott's reaction, which was scream bloody murder, run to the door to the exam room, and continue to claw at the door until his fingers bleed; and that was just by me barely lifting it out of the backpack and putting it right back in.  It took all of 20 mins to calm him down so I could talk to the doc again.  The doc then prescribed us the nebulizer commenting that it should have been prescribed much earlier and changed Scott's diagnosis from asthma to reactive airway disease.  All in all, we got what Scott needed and he currently rocks his breathing treatments now, which are twice a day and he does not have nearly as many problems throughout the day any more.

Aiden saw his new neurologist in February, we switched because his old one did not want to change his seizure medications because even though it kept him asleep 20 hours out of the day, it took care of his seizures.  My thing was, was the doc really sure it took care of the seizures or was Aiden just sleeping through them, as they are only absence seizures?  Any who, I like his new neurologist, she is very thorough.  She is concerned about Aiden though because he has floppy feet and no reflexes.  I know those are not necessarily things to be concerned about, but the doc is worried about a neuromuscular disorder when combining those with his seizures and his overly huge head.  So we get to go to a ophthalmologist who specializes in looking at the part of the brain behind the eyes, and another 24 hour EEG.  Those appointments are not until June and May, respectively, so we have a little bit of time to prepare Aiden for them.

That is a lot of information to update everyone on at once and I apologize.

In the meantime, we have been taking the boys to the Museum or Flight here in Seattle.  They love it!  Their new obsessions are now airplanes and I have no problem feeding that either.  I know that sounds horrible, but at least airplanes are age appropriate for well any age.  Both boys also have their own taste in airplanes: Aiden's loves the military jets, his two favorites are the B2 Bomber and the SR71 Blackbird; Scott loves the prop planes and commercial jets, he has even began to venture into the world of space shuttles.  I am learning so much about planes just from walking around the museum with the boys, it is amazing.  We have also become members at the Seattle Aquarium and the boys, and Eric, love watching the otters there.  Plus they have small tide pools there with sea cucumbers, sea urchins, and star fish that you are more than welcome to reach in and touch and play with, the boys are not quite so sure about those, but over time I'm sure they will become okay with it.

This all keeps us pretty busy and lately I have been feeling pretty lonely with all of this going on.  You would ask how can I be lonely with all of this to keep me busy?  I do not have many friends and the ones I do have don't really text/call all that much.  Which is partly my fault, communication does go both ways.  But I always feel there is something going on with us and that everyone else thinks we're just drama queens or something like that and I am not the best model of social skills, so I choose to let them communicate when they want. Which leaves me with no adult communication most days except for therapist and doctors for my sons.  Heck I feel like my sons' doctors know me better than most people as we are in the office more than not.  I think what brought all that on was the fact that Eric's brother is getting married this summer and only Eric is able to go.  This is due to a few of Aiden's specialty appointments that are scheduled during that time, and those appointments can only be moved if we want to wait another 3-6 months for them.  I just hate that we can't be there as Matt is by far one of the boys' favorite uncles, my big brother is the other one.   My parents and little brother are coming for a visit in August, which I am completely excited about.  I miss them, I miss all of our family.  Now comes the planning to try to make them want to move out here and stay with us...

As for Eric, he is staying really busy at work.  They still have him working overnights at the hospital, which is good because that does leave the car open for me to take the boys to and from all of their appointments; but at the same time it stinks because half the time the boys are still asleep when Eric comes home from work and are in bed by the time Eric wakes up to go back to work.  I believe we are getting into a better routine with it all though, and we are doing fun things on the days Eric has off which make it ever better.  Eric has also started going back to school to obtain his bachelor's in health care administration, which I am so proud of him he is making better grades than I am.  It funny, when we both get some down time without the boys, we are both usually doing our homework, we resemble classmates instead of husband and wife on those times.

Moving

The past month and a half has been ridiculously crazy.  First off it started with a sprinkler line having a screw in it that we took out.  That was fine, we were able to handle that stress.  It was not all that bad, luckily our renter's insurance was going to cover it.  Then our downstairs neighbor decides to call the cops on us at 3am when we were all sound asleep, but apparently she thought that Eric was beating us all.  The cop looked around and was like, what the heck is she nuts.  Then the downstairs neighbor decided to get us evicted by saying she could hear the boys walking across the kitchen at 2pm.  Well, duh we tend to use the kitchen at that time of day and we walk, not run in it and hello its an apartment you are going to hear the people above and below you.  Next thing she does really floored me, she some how got Eric's information and called the hospital, staff duty, and the MPs saying they needed to detain him, would give no reason, just that they needed to detain him.  They all laughed at her, because luckily for us we had kept all of Eric's NCOs in the loop with what was going on from day 1.  This lady has always caused us problems from when we moved in, stating that since we have kids we should know better than to live in a 3rd floor apartment.  It was not like it was our choice, it was the only one available.  Then when she found out the boys are autistic, she started calling them retarded and other horrible names as we would pass her in the hall or in the parking lot.  It was very hurtful, but we tried to be the bigger people and just ignore her, after a while it died down, but the day after the sprinkler line leaked she started up again.  When she called post and everything, Eric's NCOs told us we were moving in to post housing.  We were good with that.  We got word on a Wednesday that we were moving the following Monday, that's a four day notice that we are moving, wow.  But we did it and I think we did a pretty good job.  We are still cleaning the apartment, luckily we have until the end of the month to do that.  The move ended up being a good thing because: 1. we are in a much bigger house 2. it's a house 3. it has a fenced in back yard 4. the boys each have their own rooms 5. the school here actually isn't all that bad and 6. did I mention its a house.  I love it here and yeah its going to be tight the next few months but we will make due.
Since the boys get to have their own rooms we decided to set them up as their individual therapy rooms, that way we could possibly get a little bit of a living room back.
Here's Scott's room:

 We have his trains, rocking horse, his weighted balls, and the big blue thing hanging in the corner would be his ball pit, and when we get his climbing grips in we will be putting a climbing wall next to the ball pit, too.

 This would be Pinkerton enjoying the ball pit, he likes some sensory input every now and then too.
Also in Scott's room would be his pressure swing.

He is actually in there behind the queen size comforter.
Next up is Aiden's room:

Aiden has his cuddle swing for when he reads, his cocoon spinning chair and trampoline for when he needs to regulate, his drum on the wall for when he is angry so he can hit something that's a bit productive, a little table for work time and his favorite toy chest from Popo, that train.
I believe we did a pretty good job at getting the boys' room to fit their needs.
Then in the hallway outside their rooms we did this:

They now have their visual schedules right next to their doors and Scott's PECS choice boards right where he can see them and grab them when he needs them.
This was all done within the first few days of moving in, we figured get the boys' set up for what they need and then we can get our stuff situated.
Oh we also have a little area off from the living room that is suppose to be the formal dining room, but who needs one of those when you have an informal dining room anyways.  So we made it into the play area for the boys.

This is where we put the light table, complete with all the sensory items hung above it (I know its not in the picture, but we did add those later) and their play kitchen.  This also serves as Mommy's sewing area, as it holds my fabric and sewing machine in a cubicle nearby.
I have to say I absolutely love the fact that we have room and no longer have to feel like we are on top of one another.  And the boys, they have been amazing through this transition.  I was ready for them to have some pretty severe meltdowns over the first few weeks of all this, but they took it in stride, it was about a week before Aiden had a meltdown, and even then it was not one of his top five most severe ones.  Then Scott had one a day later, his was pretty bad, but when he was done he picked himself right up and went back to work with his ABA therapist.  I also have to say that the boys' therapists have been incredible throughout this whole thing too.  With the uncertainty at first and then the million schedule changes, they have been troopers too.  I am so very thankful for them, they are wonderful to us.
 So needless to say, things might have been incredibly hectic a month ago, but they are calming down now and it has been a very good thing.


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Busy Busy Bees

I was talking (texting) my sister earlier, which I need to remember to do more often (its been a little while).  She brought up the blog and how she ran into a friend of ours the other day and they were talking about this. I guess I did not realize just how many people my ramblings got too, but I am glad if I can help anyone in anyway, whether it be some new ideas for the kiddos or something to giggle at.  But her bringing that up made me realize it has been a little while since I posted, and I apologize for that, it has been one of those crazy crazy summers.

So where did I leave off....

Oh yes the sleep, well the boys still sleep a lot, but it is not as bad as it use to be.  Scott did have his sleep study and we got the results, they could not find anything definitive during the study (I could have told them that considering Scott slept at the most 30 mins at a time, that and he kept pulling the electrodes off).  But his pulmonologist said for us to keep a record of any respiratory problems and eating problems that he has for the next two months and then they might be looking at taking out his tonsils and adenoids.  I'm not sure if that is good news or bad news, but I guess it is at least something.

Aiden's meltdowns slowed back to a normal level, as in he went back to having them about as often as he did before the spike in them.  In fact the past few days he has been a bit too "chill" for my taste, I'm kind of concerned because it really is not like him.  I know that sounds so wrong for the parent to be worried when the child is excessively calm, but it really is not Aiden so I'm concerned he might be getting sick or something.

On to new things

Scott had his six month followups with Seattle Children's Autism Center.  That went well, they were all surprised at his progress.  He went from not having very many words and not really noticing anyone around him, to having a lot of words (and a few two and three word sentences) and completing all of the tasks they asked him to do.  He still has a bit of trouble with eye contact, but even that is improving.  They decided to have him followed by the developmental pediatrician there, instead of us going back to the one on post (which is what we were wanting to have done, so that's great!!!).  They even put in for Aiden to be followed there as well, I'm so excited about that.  We get to have both boys seen in early October.

Scott has been doing great with all of his therapies.  He loves each of his therapists, his favorite of course being his ABA therapist, she's amazing with him.  We've been working with him on being okay with water, so that bath time will not be a fight anymore and, since we live around a lot of water, so that he can start swimming lessons.  At the clinic where he gets OT and speech, they have a pool and his OT has been working with getting him in the room with the pool, but he would not move through the door.  Which is fine, we were taking baby steps to get him there and we figured it would be several several weeks before we got him anywhere near the water.  But one day when we walked to the door, another therapist was in the pool cleaning up after her last session.  She decided to roll a ball to Scott, who picked it up and rolled it back to her.  They did this back and forth for a few minutes, each time Scott's OT and I would inch our way through the door.  We got him in the door and got the door closed behind Scott while he was playing this game with the other therapist.  He then got braver and went to the edge of the pool and threw the ball at her.  After that he realized he had been shut in the room, but he was okay with it; he went on to have his full hour long session there in the pool (with no swim diaper on, so by the end of it his regular diaper had swelled up like a balloon).

The following week, the boys' ABA therapists decided that it was a good day to have a sensory day for them (that and it was one of the few nice days we get around here) so we decided to have therapy at the lake and we all had fun.  I owe both boys' lives to a friend, who saved Aiden after he decided to be a daredevil and jump off a raft into a deep part of the lake and save Scott from cracking his head on the concrete when we were all eating at the picnic table.  Aiden's ABA therapist brought her dog (as seen in the picture with Scott), and that was the greatest thing for Scott.  He loves animals, but he is in love with Katee, he kept throwing her sticks, and was following her around until we had to leave (makes me re-think about getting him a puppy to raise and train as his service dog because he opens up so much when she is around, I think it could help him).  Aiden also loved having Katee there.  You know those little bones you can get to hold a roll of the poopy bags and clip to your dog's lease; Aiden kept trying to feed that to her.  He kept saying, "eat da bone" as he'd try to push it in her mouth, it was too cute.

Some more news on the boys is that we decided to go ahead and send both of them to school this year, due to the fact that Eric and I talked about it and we both feel I could use the little break from them; plus Eric (and I, once I let myself realize it), does not want me to take on too much and become overwhelmed.  We just decided to try to get him sent to a different school with a different teacher than he had before, with hope that this new teacher will understand a bit more about Aiden's behaviors (either that or at least listen and let his ABA therapist teach her coping mechanisms).  It was not like he was being bad to be bad, he was just bored because he has known his letters and numbers for a while and was teaching himself how to read and do addition (which he is still doing so we want to get the teacher on the same page).  We get to have the IEP meeting the Friday before school starts, so it's going to be quite a rush getting things all ready to go but it will hopefully all turn out for the best.  We are also looking forward to doing all this again in just a few months when Scott turns three, but then we will be pushing for a bit more support at school.

A very sad thing that is happening this coming week is we have to say goodbye to Aiden's ABA therapist; she got a full time job at the neighboring school district (que sad sad music and crying).  We love her and do not want to see her go, but we knew it would happen sooner or later, but on a good note, we will definitely be staying in touch ;).  We have met one of his new therapists (yes it is taking two to replace her, that is how special she is, not one other person could match up :D) and she seems great, Aiden did fairly well today with her.

On good note, the boys have been getting along a bit better with each other.  At least they are tolerating being in the same room at the same time a little more often.

On to how things are going for Eric...

Work is going, I guess, there really has not been much of a change with that.  They keep flip flopping his shifts, one day he'll have the over night shift and then the next he'll be on day shift.  It really is not fair how they treat him, but what can I do.  I know he is getting on a few committees at the hospital, to help with some of the scheduling and regulations, the equipment training, and the education team.  It keeps him pretty busy, but he still makes time for the family and to help out with church.  He is helping with the AVL team at church (he's always been so tech savvy) it's amazing what all he does and knows about mixers and whatnot.  All I know is that when he starts trying to talk to me about all the kind of stuff, my head starts spinning because I have no clue what any of that is.  He is taking leave this month, just to get sometime to focus on the boys and relax away from the hospital for a little bit (that and to study for the promotion board too).  We are not doing anything special, maybe driving up to Forks for my lovely sister-in-law, she's been wanting me to do that since we moved here.

As for me, things are going a lot better.  I am having problems focusing on my coursework, most of the courses I've had lately are repeats of some of the ones I had in my associate's program (using the same textbook and everything) and its just hard to not try to learn more, but I got in trouble with one of my instructors for going a bit too deep in my research (makes no sense to me).  I have not really done much in the way of my projects in the past few days, I need to pick something and start back up.  I am thinking of starting in on some Christmas gifts for my nieces and nephews.  I do need to make the boys some new weighted blankets too, so maybe when they get into school I can have lots of free time to go nuts with ideas.  I miss having my hairless friend help me.

As for health-wise, things are not too bad.  My last test results were normal, which is good, means nothing has stopped working yet :).  I have started to try to change some of my habits around.  I have started trying to build up my endurance (the day at the lake showed me how much my lungs have suffered with everything, and trust me I missed being able to swim for distances).  I am right now just taking it easy and trying to build up to running two miles, I started off at going a mile and am now at 1.60 before I have to take a breather, so not too bad.  The strange thing is that the first few days kicked my butt (especially in the energy department), but now I have lots of energy and no longer feel like crud afterwards.  I am also trying to cut my caffeine intake in half as well as cut out my chocolate snacking.

So all in all, nothing too exciting going on, just been busy.

July 11, 2012

So things are starting to get back to normal around here.  Today the boys actually stayed up to their nap time, but then they did not wake up for dinner at all.  That is still better than them falling asleep at 11am and sleeping until 4am the next morning.  I am hoping this is a sign that they are slowly getting back on their schedules.  I do know that Aiden has been showing a lot more behaviors lately, he's been having more and more meltdowns.  It has been a while since he has been like this and I am getting a little bit worried about it.  I have been racking my brain as to what could be triggering these meltdowns and I am not coming up with anything other than his goals have become harder, but that is the normal course of things.  I just do not get why that would all of a sudden cause the increase in meltdowns because he never had a problem being pushed before.  Do not get me wrong, he would always have some things to say, or scream, but he would not have a full out meltdown do to it.  Anyways, that being said, the boys have not been on the best terms with one another for a little while; but today they were in good moods when it came to each other.  They were running around the house laughing and babbling to one another, it was just too cute.  Scott has been becoming attached to carrying a blanket, or as he says a "be be," with him, but he gets upset and frustrated because either it will not stay on him while he is walking around or sitting at the table or it becomes too heavy and bulky for what he is trying to do.  So with this and the fact that when he is wearing his compression outfit, either the SPIO one or the one I made, I call him super man, because that is what he looks like, like he's wearing a super hero suit.

  This got me thinking about capes, so I made the boys their very own super hero capes. 

They loved them, they ended up sleeping in them it was too cute.  But it did the trick, I figured for Scott it would kind of be like a blanket that is just tied to his back, and that's exactly what it was.  When Scott started getting tired, he laid down on the couch and turned his cape around to look like a really long bib and cuddled under his "be be;" it was great.  For the longest time after I put their capes on the boys just spun, around and around, holding their capes out and watching them fly behind them. 

They were doing this all over the house, just spinning everywhere, it was making me dizzy watching them.  Needless to say, they were having a blast and it has been a while since they have been this happy, let alone this happy sharing the day with each other. I am hoping this happiness with each other continues through the weekend because we have a busy and fun weekend planned for the boys.  First off, Saturday is Rhubarb Days over in Sumner, I cannot wait it has been a long time since I have had a good rhubarb pie, or rhubarb period.  I cannot wait to let the boys try some and see if they like it or not.  Then Sunday after church we are heading up to Issaquah to the train museum for Day Out With Thomas.  That is the big one that I cannot wait for, we get to ride on a life size Thomas steam engine, I cannot wait to see the boys' faces, I think they will be excited; esspecially Scott, Thomas is his favorite.  With that being said, I need to get back to my schoolwork, I want to get it all done before this weekend, that way I do not have to worry about it and can have a much needed break.



Summertime thinking

We have been having our good days and bad days lately.  We had whooping cough a few months ago, and then just two weeks ago we had hand foot and mouth. We have no luck when it comes to immune systems, so if it is going around, we are surely to get it, and sometimes we get it twice. 
We are just now starting to get back on a routine schedule after being on quarantine, and then a pressure system comes into town and plays with Aiden's ears.  He had tubes placed in his ears when he was two, and they stayed in for a little over a year, which is a miracle.  But they fell out about 6 months ago and while he has not had any ear infections (thankfully) any time there is a pressure system or the weather changes suddenly, he gets a lot of pressure in his ears to the point of excruciating pain.  That has been our weekend and beginning of the week so far.  The kicker is that the doc won't do anything because he doesn't have an ear infection so he sees there is nothing to do because his ears do drain.  I say there should be something they can do (such as putting new tubes in) so that the pressure can escape just like the fluid.
Sorry about my rant, I just really do not like the doctors we have.  Considering I have been procrastinating on scheduling Aiden's 6 month neuro check up, both the boys were suppose to see the developmental pediatrician on post (but I just don't like him considering he is the one who said Scott was on the spectrum but he was not going to diagnose because he wanted to test Scott's cognitive ability when he was 5).  Plus I am a couple of months behind on seeing my doctor, but I have a feeling I know what she is going to say to me and I do not really want to hear it.
So on to new things....
We have decided to homeschool the boys for at least this next school year, and we have even decided upon a curriculum.  So now the big thing is getting the boys' IEPs to state that and to figure out their school time schedule and activities. 
In the meantime we are going to be working on potty training, as soon as I get some more laminant (we seem to run out of that all the time), I will be able to post a reward chart and potty schedule for them to see and follow. 
Scott is talking a lot more now, I love to hear his little voice.  He cracks me up with some of the things that he says, even if he is just repeating, it is so much cuter coming from him. 
I am still in the middle of setting up my webpage online to start selling therapy equiptment.  I have my pricing scheme all worked out, I just need to make a few prototypes and take pictures of them.  I say prototypes, not because I haven't made them before, but because I do not have pictures of any of the ones I have previously made, so now I have to make more (which makes me very happy, I love to sew!).  I did have to take a break, because I broke the sewing machine a friend of mine was letting me use (I actually think it decided to go on strike because I had been using it so much lately).  I was blessed with the fact that Eric got a refund from paying for his LPN license last year, that I was able to buy a new one.  I just feel really bad that I broke my friend's.
On the other side of things, my school is going great.  At the moment I am in a neuroscience class and my team chose to do a presentation on autism, I was happy about that because this week the individual assignments for the class are to look at each other's team assignments and evaluate it.  I feel confident about my team's presentation because I was able to bring a lot more knowledge to the class than just what the book stated (using accredited sources, of course).  I just cannot wait to see what others will say about the presentation.
Eric's work is going well, he is stuck on overnights for the next two weeks, but after that he is back on days so we will all be on the same schedule again. The hospital is doing a needle change over, they are changing the types of needles that they are going to be using, and Eric is one of the leaders on that committee, which is good, even if he thinks it's a pain in the butt.  He is also being considered for a few other committees which will help him when he is looking at being promoted, which he goes to the board next month.  He is staying pretty busy, but he will be able to be home a bit more, or at least be awake when he is home a bit more, for the boys' sake.  They were missing him so badly when he was working over nights and then when he was at WLC, because they never saw him; he was either asleep when he was home during the day, or he was not home until the boys were already in bed.  But now they will get to see him more.

Starting a new chapter

I know I have been lacking in my writing lately, I apologize for that.

I am getting all the information gathered to start my own business, aka selling the therapy materials that I can make.  I have to figure up the prices and sizing scheme for the weighted blanket, compression vests, body socks, lycra sheets, and resistance tunnels.  Then I have to make all of the prototypes so that I can take pictures of them all, I mean I could use some of the ones that I have already made, but I want have a few on hand anyways. 
The good thing is I already made the account on etsy.com and I already have a name, I am using the name we planned on giving our foundation (A Special Destination).  This will give us the first step in getting the foundation up and running.

I have been thinking, thanks to a friend of mine, about homeschooling the boys again.  My friend palns on doing that for her children and, well, Eric and I had bounced around the thought before we moved up here; we just dismissed it after we moved to give the public schools a chance.  Well, nothing against the schools here, they are actually pretty great, they just do not exactly know how to handle Aiden's behaviors, which means next year when Scott is in school, they will not be able to handle his behaviors.  I give the teacher credit, she seems to be willing to try to learn, but there are just a few things that bug me at the moment.  Then theres the fact that we tried to get a waiver in to get the boys into the neighboring school district that has a very good autism specialist on staff, but they have so many kids on the spectrum in their district already they could not accomodate two more. Since we are plugged into a lease until Sept 2013, we cannot move into the district just yet unless we want to have to owe them.  I could handle paying the apartment off over time, but I am also in the process of trying to pay off our non-essential bills at the moment so why would I want to add to that already huge pile?  So that brings me back to my friend who is going to homeschool her kids.  That would make perfect sense for us because then I would not have to worry about making sure I schedule their million therapies around school because I could do the school around them.  Then I could see if my friend would want to do school together and we could teach our kids together that way they would still have the social piece that they need; let alone the fact that we could both set up the curriculum and two heads are better than one on that (I know I would have a hard time coming up with new ideas all the time).  But again this is all just a thought, I need to talk to her about it too.

My schooling is going along great, I am loving my classes and my peers have been great so far.  I even found out that Harvard offers a degree program in autism studies online (if I could get in that is).  But I still have the plan to get my BCBA and then my PhD so that I could help children on the spectrum by being their therapist and then also being able to diagnosis them.

Other than that life has been going pretty well lately.  I have been a lot happier than I have been, which is good.  I finally feel like I am where I should be.  I have been able to come to grips with past decisions that have affected my body and my mind and I have righted those wrongs.  I am finally at a good weight from recovering for anorexia (oh yeah, I have been open about that a lot more now too).  I am finally able to eat without feeling like I am going to get sick, and I my eating schedule comes more naturally to me, which is much better than having to set alarms for each of my meals.  I have a good exercise regime down, and I think I am finally getting some pretty ripped abs too.  I love myself again, which has been a long time coming and I could not ask for more.  I apologize for everyone who this is news to them, I did not intentionally keep this from you, I was embarrassed about it and I wanted to make sure I was on the right track and going to be okay with myself before I told anyone.  Main thing is I did not want anyone to worry about me, which you do not have to do anymore because I am finally healthy in all senses: mind, body, and spirit. 

The boys are doing good.  They are making progress so fast.  Their therapists are always trying to figure out what to do next without putting them way ahead of their peers when it comes to cognitive functioning (I am not trying to brag but my boys are some smarty pants).  Scott I am going to start working with on his signs a bit more strictly since he still picks up on those faster and uses them spontaneously more so than his verbal language.  Aiden is becoming a ladies man.  He is already betrothed to one little girl (and that wedding is definitely going to be happening :)).  But when he comes from school, I keep finding these notes from some of the 5th graders who help out in his class.  I have to say, my little guy is pretty loveable, but I have a feeling that when he is older I am going to have to be chasing girls off from him.

Busy Busy Busy with nothing too interesting going on

I know I've been dropping the ball a little bit on keeping everyone updated and I apologize for that.  Things have been busy and hectic around here, so I am just going to start with what has been happening recently. 
A friend allowed me to make a weighted blanket for one of her friends' son.  I was excited, nervous, and very self conscious about it, but I embarked on it.  I felt bad because I was hoping to get it done in half the time I ended up taking for it, but I think it turned out perfect. 

It is a duvet cover with the weighted blanket snapping on the inside.  It was the first one I had made like that, but I like it.  I have to give credit to my friend that the little boy's mother, they are the ones that had the idea of the duvet cover. 
I am contemplating opening a store front through Pinterest.com or amazon or somewhere online to sell busy books, weighted blankets, lycra sheets, resistance tunnels, and body socks.  I make a lot of these for my boys, so why shouldn't I be able to help other families out by making them some for cheaper than you can find them else-where?  Plus a friend has been asking me to do so.  I guess the only thing holding me back from it is my self, I'm so nervous that no one will want anything or no one will like what they get, I guess I am a very self-conscious person. 

On to the next thing that had been happening, I had a bit of a health scare.  But things are cleared up and it was nothing to worry about, but for about a week I couldn't stop thinking about the worse-case scenario.  Then it turned out to be the best-case scenario and I am thankful for everyone's prayers, they ment a lot and truly helped me through it. 

Scott is still on the waitlist for his OT, speech, and language preschool :(.  I was hoping they would have started by now, but I understand there are a lot of children around here who do need the help and it will be his turn when it is his turn.  On the upside, I did hear that he is at the top of the waitlist for the next 12-week session in the language preschool, so that will be starting I believe next month.

Scott is making tremendous progress with ABA, he picks up things so quickly.  He is also becoming more and more talkative; he does still have his days where he barely mutters a word, but on his good days, which are becoming more and more often, he is starting to talk up a storm.  We are still using sign language as a helper, it gives him a visual and kinsthetic input for the words, granted we still do not know very many signs as we are still in the process of learning too.  Through his feeding therapy, he is eating some new foods, granted half the time he will not eat them for us at home, but it is a start.  We have found out that part of his problem with foods is that his gag reflux is relatively closer than most and so the foods need to be in smaller pieces so as not to hit his gag reflux. 

Aiden is a gem as always with his therapies and progress.  He is mastering things just as quickly as Scott is and it is getting harder and harder to find things to work on without making him even farther ahead academically of kids his age.  He is getting socially better, at school he has two best friends that he plays with and he has started telling me about them when he comes home when I ask about them. 

On a sour note, we did hear back from the school district we were trying to waive the boys into for next year, and they denied us.  It makes sense, they do have a lot of children over there that they need to focus on helping before allowing even more children come it.  It was a bummer, but I completely understand.  The plus is that it seems that Aiden's teacher is working with his ABA therapist on managing and working through his behaviors a bit more. 

School is going decently well for me, I am currently in a statistics class and it is kind of keeping my butt.  I always thought I was good at math, I mean I am with the algebra stuff, but when it comes to frequencies, distributions, graphs, and all the various statistical stuff, it makes my head spin.  But I believe I can get through it, just 3-1/2 more weeks until it is over and I am on to my next class.

So I guess nothing really interesting has been going on with us recently, just been kept very busy.

One last picture to say goodbye.

Aiden and Mister Pinkerton under their lycra sheet.  I say their lycra sheet because all cats have Asperger's and Pinkerton loves the pressure input from it just as much as both the boys.  This was when Aiden wasn't feeling well and Pinkerton stayed with him to make him feel better.

It's Been a Bit

I know that it has been a little while since I updated everyone and I apologize for that, so here is the run down of what has happened lately.

1. Scott got started in ABA therapy, he loves his therapist too, she is awesome.  Scott has a little bit of a problem with the structure of it, but he is getting use to it these past two weeks.  I think he will do great.

2. Scott is finally getting to be okay with Aiden's ABA therapist, he almost gave her a hug the other day, but he is giving her high fives, which is a big step.  I think that he will warm up to her soon, I just feel bad because he has not done so yet.

3. Scott also started with his oral function therapy, right now the therapist is just trying to gain his trust.  He has a hard time warming up to people and she does not want to push it right off the bat.

4. Scott is on the wait list for his occupational and speech therapies.  Hopefully we can get him started with those soon.

5. Aiden is having a bit of a hard time with the schedule changes.  His GI issues are acting up due to the stress and anxiety of it all.  I am hoping that he will be able to adjust soon.

6. We found a very loving church that accepts the boys for who they are.  Everyone here is incredibly inviting and loving.  I feel at home here and it is a great feeling.  The boys love their Sunday school there, and it is a good experience for both of them and will help Scott with preparing for preschool in November.

7. Eric is being run ragged at work, but that really is not anything new.  I just wish that they would be able to understand that he works all night so they will stop bothering him when he is trying to sleep during the day.

8. I am now in my second class in my bachelor's program and I am still loving it.  At times I do have trouble focusing on my assignments and that could be a mixture of the million things that are going on around here, or I am getting a bit burnt out, or I am just not that into the philosophical aspect of the history of psychology.  (I've never been that into philosophy)

9. I am in the process of making a weighted blanket for another client of Aiden's ABA therapist.  I am nervous about it, I have never really made something for someone else like this and I want to do a good job because he deserves it to be great.

10. I made a Lycra bed sheet for Scott to help with joint pressure input that he craves. He loves it.  I am planning on making a few more, that way I have spares with various tension in them and a few for Aiden, I think he might like them.

11. I am trying to make a train control station for Scott and a flight control station for Aiden, so if anyone has any ideas or random switches, levers, steering wheels, ect they would like to share, I would greatly appreciate them.

12. We are working on trying to get the boys into the school district that is literally just down the road from us.  Nothing against the school district we are currently in, Aiden's teacher does try to help, but they just do not have the resources to fully help the boys, whereas the school district just a mile down the road does.

This alone has kept me pretty busy, especially with trying to get everything scheduled and moved around, it has been crazy.  I am probably going to have to do some more switching when Scott starts OT and speech and I apologize in advance to the boys' therapist, they are amazing and put up with me and the changing schedules so wonderfully and I hope that they know I do not try to make anything harder on them.  I appreciate everything that they do.