Showing posts with label PDD-NOS. Show all posts
Showing posts with label PDD-NOS. Show all posts

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 :)

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!




Sunday, January 8, 2012

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

This is my first time blogging, so bare with me please.
The past almost two years since Aiden has been diagnosed have been a rollercoaster ride. How did we handle getting the news of him being autistic, really well when you think about it. Our hearts did not break and our dreams were not shattered, but we did not jump for joy either. We just took it as another step. We knew something was going on, we were not naive or anything, we were just glad to have a definitive answer so that we could research and start the next step to our adventure. We started him in OT as soon as there was an opening, but then shortly afterwards we had to move to San Antonio, which was a huge change from everything we had known in Colorado Springs and before.
Did this move set us back, yes yes it did.
Were we discouraged, no, it just pushed us to make sure we got him into see the right people as soon as we got there. This then started our journey into the world of ABA therapy. It is a godsend, I personally believe it is what has helped Aiden out the most. All of his triumphs happened during ABA therapy first, and then only time would tell if he would generalize those skills to everyday life. Looking back now, a little over a year after he started ABA therapy, Aiden is a completely different child than he was back then. He is happier now, I get to see him smile all of the time almost.
Some would ask if I was ever worried about Scott also being on the spectrum. I would have to say that yes, the thought was always in the back of my mind, but I did not fret about it that often because at the time Scott was doing things that Aiden was still working on. Aiden had stopped walking when we first moved to SA, Scott started walking before Aiden started back up, and he was just nine months old at the time. That's really young to be walking. Scott hit all of his milestones well ahead of when he should have, most parents would be proud about that, and I was, but I was also secretly afraid, because that would also mean that he has farther to fall when he starts to regress.
We tried to keep that from happening, whenever one of Aiden's OT or ST's would give me some "homework" to work on with Aiden, I would use it for Scott to. It worked out great since they were both functioning at the same level. I would also work side by side with Aiden's ABA therapist for Scott, mainly so that I had something to do while she was at the house, but also because I was still slightly afraid for Scott. That is why I worked so hard on getting Scott to make eye contact, that is the one thing that Aiden did before Scott.
That is also what is biting us in the butt at the moment. Scott finally fell, and fall he did. Scott was doing so great, he was talking in one word sentences like he was suppose to, he would socialize with others, as long as Mommy was right there. The minute I would go out of the room, the screaming and tantrums would start and continue until I came back, no matter if it was just for five minutes of two hours. That's when I started to really get worried.
But when we had him evaluated at 18 months, he got the diagnosis of social anxiety. I could handle that, we were suppose to see a psychologist for him, but she never set up the appointments and would never return my calls. Then we got word we were moving again, just after we got told we would be staying in SA.
That was heartbreaking, but the move this time was not so bad. Aiden did not regress when we moved, we worked with him the whole way and he kept most of his skills. It did take us a little while longer this time to get his services started up, but up and going they are, and he is doing great. I absolutely love his ABA therapists, they are amazing women and I cannot think them enough for what they are giving us.
Scott on the other hand, stopped talking, he started having tantrums where he bangs his head on the floor, he hates loud noises and will bang his head on the wall when I vacuum or have the dishwasher on. He also started to make sure things are in lines, perfect neat lines, sorted by color, size, or number. That is why his favorite toys are trains, they stay in lines, they follow lines, that are perfect for his OCD.
But that's the problem, because he technically plays "appropriately" with them, when in reality, they allow him to not get upset every five minutes when Aiden knocks over his perfectly sorted blocks. Scott is also having a lot of sensory problems, too. He use to not care about the feel of his clothes or of his diapers, but now he will not let us come within five feet of him with a disposable diaper, so we switched to cloth and he lays down for us and lets us change him. He will not let us put clothes on him, but we have found that he loves Eric's socks, he wears them as his pants. I know it looks weird, but hey that's us, we're the weird family.
When we took Scott to see the Developmentalist on post, he said that his OCD like tendencies are typical two year old behavior, that his lack of speech is just there, that he is social enough, and that since he has great eye contact he's not worried until he's able to test Scott's cognitive abilities at the age of five.
I'm sorry, what did you say. That's right this doctor still seems to think that eye contact is still a defining symptom of Autism and that he has to be mentally retarded to be on the spectrum.
Sorry but no, over half of the children who are diagnosed on the spectrum have impeccable eye contact, because they were trained by their therapists and parents to have it. And most kids on the spectrum have an above average IQ, look at pretty much all of the famous ASDs. Heck meet Scott's older brother Aiden, who is three and knows his alphabet forwards, backwards, and inside out; who can count up to 30, can write his own name, knows all of his colors and shapes, knows just about every animal out there, and is starting to teach himself how to read. That's right I said teach himself, because neither me nor his therapist are working with him on that and I caught him the other day reading a few words out of his Dr Seuss book. His mind is truly amazing and anyone who still thinks that if someone is on the spectrum then they are mentally retarded, then they haven't met my son yet, and they won't know what hit them when they do.
So after that horrifying appointment with the developmentalist who still hasn't caught up with the new research on ASDs, we talked to Aiden's ABA therapists. They are all very concerned about Scott and they assured me that getting a second opinion is a very good idea. So we got the new referral and we got put on the 6-9 month waitlist to see the Seattle Autsim Clinic. We thought we were doing good with that, until 15 minutes after I got him on the waitlist we got a call saying there was a cancellation and we had an appointment within the week.
I don't think I have ever jumped for joy before, but I sure did that day, and that was only a week ago.
We went and saw their intake nurse and she assured us that Scott has some concerning areas, in all three diagnostic categories. She referred us to a research study that is looking at the link between autism and the attention to and control of emotions and social development. She felt they could get him in to be evaluated sooner than her clinic could, and they use the same psychologist as them for their evaluations.
She was right, Scott has his evaluation set for next week, I'm excited and scared for him. I know this will be a good thing because we can get him diagnosed and get him started in the therapies that will help him. Heck we already have therapists jumping over one another to work with him, we just need the diagnosis so that insurance will allow it.
I know that makes me sound like I am wanting Scott to be autistic, and its not that. I just know my child and I know that he needs ABA to help him with his anxieties and social problems. I'm just doing what I can to get him there. And I blame myself for him not being blatantly obviously there, because I did therapies with him, I worked with him to get him where he is. That has helped keep him from regressing any further than he has.
And when he gets the diagnosis, that will make my days even busier.
Right now I am having enough trouble juggling Aiden's OT, ST, 20 hours a week of ABA, plus him starting school this week. Then we are making weekly trips to Seattle for Scott for the research study and to get him diagnosed, and i will have to add Scott's ST, OT, and 20 hours of ABA onto that. Which alone will be making my head spin, let alone me trying to get my school work done, which reminds me, I start my bachelor's program the end of February.
This is going to be one incredibly crazy year.
....
This weekend has been a crazy one.
I should have added empathy to Aiden's strengths earlier.
Friday, I was sick, I had stuff coming out of everywhere and it wouldn't stop so Eric had to take me to the ER. While he was getting the boys dressed, seeing as it was past their bedtime when all this started, Aiden came and looked me right in the eye and said, "mommy sick, mommy get better, mommy okay." He was so worried about me, it made me cry, it made me okay with going to the hospital, I hate doctors (I'm okay with yelling at them about the boys but when it comes to myself, I just prefer not to see them, they never have any good news). After spending 4 hours in the ER and taking in 3 liters of fluids and who knows how many meds, they let me come home. I had at least stopped volcanoeing. Aiden was still worried when I got out to the car, he kept telling Eric that "mommy sick, mommy no feel good, mommy get better"
I was proud of my little guy, even if I did not feel well, I was proud.
Now both Aiden and Scott are sick with me. We were all watching Thomas the Train this evening on the couch. The fact that they both were laying on my for the entire length of the show says they were not feeling well. But Aiden showed his empathy yet again in worrying about Scott when he fell asleep. Aiden covered Scott up and told him to, "get better misser fisser" and then Aiden went and laid down and covered himself up and fell asleep. I couldn't be a prouder mom. My boys might not be conventional, or "normal," but really what is? My house looks like a therapist's dream home, as said by all of Aiden's ABA and visiting ABA therapists. But its mine and I wouldn't change it for the world.

Sunday, December 18, 2011

First time blogger, long time stalker!

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

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

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

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

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

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

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