Our Hawaiian Vacation!

We just came back from our vacation to Maui! We celebrated my in laws' 35th anniversary. It was indeed a paradise. It was a perfect weather. It was also my 1 year old daughter's first plane ride!

I have to admit I was anxious on how our lil ones would behave on the plane especially Ethan. When Ethan had his first airplane ride it was just for an hour to Southern California so I wasn't too worried about it. His next plane ride was to the Philippines where it was a straight 12 hour flight and I was incredibly pleased on how he behaved. He slept through the flight mostly. That was 2 years ago. Our 5 hour flight to Maui last week was short but he had a meltdown during the flight when he asked for a phone/iPAD and we said we don't have it. We tried distracting him by tickling him, reading the airplane's magazine whatever we can find in the seat pocket but it didn't work. Instead he cried, screamed, kicked the chairs. My husband said he didn't bring the iPad which was loaded with his favorite Yo Gabba Gabba shows and music, I was like, SERIOUSLY??? That could have been a life saver but I understand that we're also trying to limit his screen time. His meltdown lasted for a long 10 minutes. My husband and I maintained our calmness during that time which was difficult! In the past, we would be very impatient and get upset with his behavior (we still do sometimes!) but we've learned over the years that it only aggravates the situation and Ethan's behavior just gets worst if we get mad at him so we've learned to calm down in this type of situation.

When Ethan doesn't get his way, his first line of defense is to cry (at least when mom is around). He rarely cries at school or daycare, apparently it's a CRY-ONLY-WHEN-MOM-IS-AROUND syndrome. I try not to give in but he doesn't give up either. He can cry and scream for a long time until he gets his way. Now, if we're at home- I'll let him cry but when we're out in public especially on an airplane where folks are trying to sleep or watch a show, and I can't take him anywhere else unless we parachute out of the plane then it leaves us no option but to calm him down the best possible way. So, my husband busted his phone out and let him listen to the Bunny Rabbit show song, we let him lay down, pat his butt and in a few minutes he was knocked out. Hooray! 

We almost have to have a Standard Operating Procedure (SOP) / Runbook with Ethan, since he has a hard time expressing himself, we have to read his mind. Something like, when he cries and seems sleepy, play some lullaby music, pat his butt, etc. Or when he cries, mom pours a glass of wine and chugs it! LOL

Anyway, on our flight back we have rented an iPad from Hawaiian Air and it was a life saver!!! He repeatedly watched Mickey Mouse Clubhouse (which is one of his favorites) until he fell asleep. Whew! 

During our vacation, Ethan enjoyed swimming and walking on the beach. Our 1 year old Emma enjoyed walking in the grass chasing the birds. We also drove to the beautiful Road to Hana, went snorkeling on Kamaole Beach and Kapalua Bay, walked through the old town of Lahaina, checked out Whalers Village on Kaanapali Bay and we hung out of course on our favorite Wailea Beach. It wasn't a super relaxing vacation but what's important is we're all together. Seeing our kids happy makes everything worth it. It is priceless and we'd do it all over again! Have I mentioned we're travelling back to the Philippines in November? :)

Just sayin' I love vacations!

Thumbs up for Maui!

Our 2 munchkins - Princess KaEmmaEmma and Prince DaEthan :)

Sibling Love

Our ABA Intake Appointment

We had the intake interview yesterday with the Case Manager from Easter Seals for Ethan's Applied Behavioral Analysis (ABA) therapy services. We mostly talked about Ethan's behavior, his likes and dislikes, his strengths, his favorites, his schedule and all about my sweet little Ethan! The appointment took about an hour and a half. As we talked about him, I can't help but to put a smile on my face as we recall some of his odd but cute behavior. The case manager told us she will submit the collected information over to their Customer Service who will then turn it in to our health insurance company which will determine how many hours of ABA therapy per week Ethan needs. It's pretty much a 6-week process to get ABA therapy started. She told us it's typically between 10-20 hours per week (some kids get 20-40 hours!) but it varies depending on the family's availability. We were asked what our end goal is, my husband and I said - for Ethan to follow age-appropriate directions, if he can master that, everything else would follow right? Like sitting still, remaining on a task, etc. It's also a pretty broad goal. I can't even follow directions sometimes (or maybe I just refuse to?)! I think what we really want to just get out of it is for him to cognitively catch up with his peers. We can deal with the physical and fine motor skills limitations but we need him to understand people around him and his environment especially if it involves his safety.

As we were talking about Ethan's schedule, I can't help but to ask myself - how are we going to make 20 hours per week apart from Ethan's 15 hours of school, 2 hours of Occupational Therapy, 2 hours of Physical Therapy and 1 hour of Speech Therapy weekly? If he has a 40 hour per week availability (just like our jobs), his weekly schedule + ABA therapy make up for it. What about him eating, travel time, napping and just taking a break? I also wanted to enroll him to some summer activities like swimming, how can I fit that all in our family's schedule? My husband and I work full time and occasionally we work from home. Thank God for understanding managers that value work-life balance! I haven't figured it out yet but I'm trying to find alternatives on how we can manage Ethan's schedule. Maybe we can take it slowly, maybe we'll start with 10 hours per week and see how he progress? Maybe we'll find a preschool program where they let an ABA therapist be with the child? Whatever the case may be, we will make sure we are involved in every step of the way.

How do you manage your time and your child's therapies?

ABA Therapy Approval

We finally got the approval after almost 3 weeks from our health insurance to proceed with Ethan's ABA therapy. Luckily I followed up with the Pediatrics Development office because Ethan’s application got stuck somewhere. We have an appointment on Tuesday (tomorrow) for an intake assessment to determine the number of hours he needs for therapy.

By the way, I also applied at the Regional Center back in March for more services and we just got the letter on Friday that we are assigned a case manager. Our intake appointment is in July.

Now I have to fill out all the forms for our appointment tomorrow and for Regional Center. They're all the same questions - Medical history, diagnosis, etc. so I'm just going to print them out and attached them to the forms.

These are all good news! Thank God for health insurance and our tax dollars working for us!

Our Potty Training Saga

We started potty training Ethan when he was 3 because this was 'The age' supposedly. According to some websites, some signs of potty training readiness are: 1) fewer wet diapers, 2) understanding simple directions, 3) understanding bathroom lingo like poo and pee, 4) predictable bowel movements, 5) perform simple undressing, etc. Ethan met 1 of the signs so I thought we should try and like what everybody says, every kid is different. I didn't expect him to be potty trained in 7 days but I want to get him into a habit of just sitting on the potty (which was pimped out with flushing sounds and music).

It took him a while to get used to the habit so we were off and on about our potty training program because we were frustrated and I have to admit we got lazy.

When he turned 4 that's when we really started getting serious about the potty again. It was our main priority above anything else. Here's how we went through with it:

Materials we used:
- Potty seat attachments
- Potty chairs
- Potty watch
- Stickers / iPad for reward
- PATIENCE! (you can buy it from the store called Virtues and More haha)

Instructions:
1) Load Ethan with liquids, I meant let him drink liquids. :)
2) Take Ethan every 30 minutes, after a few days increase it another 30 mins, an hour, every 2 and so on.
3) Everytime he goes, give him a reward. If he doesn't don't yell, just hold it in and try again next time.
4) Repeat Step 1

Incentives:
1) He can be enrolled to any 4 year old pre K classes (preschools in our area will only accept potty trained 4 year olds)
2) 35 cents per Pull Ups diaper savings which translates to $35/month = $420/year

Alrighty, We're all set and We were ready to go!

Btw, the Potty Watch was just OK, I had to turn it off at night as it works round the clock (duh, it's a watch!). It's essentially a timer that you can set for 30, 60 and 90 minutes. Anyway, as weeks went by, we saw Ethan getting more comfortable using the potty. The iPad as a reward helped a lot. He would pee right away just to get the iPad, he wasn't too thrilled about the stickers but it helped in the beginning. December of last year (2015) is when we committed ourselves to letting Ethan just wear briefs to school. He had accidents at school fewer and fewer times. The bummer was when he had poo accidents at school! We know when Ethan has to go #2 because his legs get stiff, it's because of his CP. He says after the fact "I pee peed", "I poo pooed". I appreciate that he says it but I need him to say it before he goes. I'm not quite sure if he doesn't feel the sensation or he just can't express himself. He also has weak abdominal muscles related to his CP. I have raised this concern to his pediatrician, the answer I got so far was just to wait and see.

Anyway, fast forward to today. It has gotten a bit better, I found that letting him stand to pee is sort of working for him. He no longer wears a diaper / pull ups at night. He's still not fully potty trained though.

What has worked for your child? How do we encourage him to tell us when he needs to go?

EEG result

Ethan had an EEG (electroencephalogram) test on 5/6/16. EEG is used to track brain wave activity. The test was ordered by his neurologist right after I emailed the doctor of the seizure that Ethan had while sleeping. His appointment was at 8am, we checked in and he was called shortly after that. The EEG technician spent couple of minutes attaching the electrodes on his head. There were 3 parts to the test - 1) blowing a pinwheel (which is not Ethan's cup of tea, 2) light strobe and 3) just Ethan relaxing. Ethan was very cooperative and his dad helped him keep still by showing him some of his favorite shows and music on Dad's phone. The whole test took about an hour. The result was sent right away to the neurologist so I emailed Dr. Hayward right away.

The neurologist called us finally at around 1pm to let us know about the result, and the results were abnormal. There were 'spikes' coming from both the left and right sides of his brain (mostly on the left if I recall as my brain was getting a bit foggy when I heard about the result!) She said there's a 50% of a seizure happening again and if he gets another one then that would be epilepsy. During that time, I was like, seriously? I can't wrapped my head around it. If there's anything else, at least we now somewhat know what's happening in his brain. It explained why Ethan had a seizure and I pray that he never has one again! Once again, I googled the heck out of - EEG abnormal results in kids, there's a lot of information about it. I found out that these 'spikes' probably explains why Ethan behaves in a certain way. The culprit was his PVL (Periventricular Leukomalacia) which was found when we had his MRI done when he was 14 months old (the MRI test was ordered because he was missing his gross motor skills milestones). His neurologist prescribed him a drug that will quickly dissolve in his mouth when the seizure last for more than 5 minutes. I put it in Ethan's backpack so wherever he goes, he has it with him. I sure hope we never have to open that medication, it's so scary to watch him go through it! When he first had an out of the blue seizure back in February, I had to call 911 and that was quite an episode. It turned out it was a febrile seizure (related to high fever). The second time he had it, I was surprisingly calm, I guess because I somewhat know what to do but boy, I never want to go through it again.

I can never leave Ethan most especially when he's sleeping, I now have to keep an eye on him (literally) at all times because I'll never know when the really bad and mean S will strike!

If you want to learn more about EEG, here's the Wikipedia link -> EEG and another EEG explanation

Ready for the EEG test!

My handsome boy - post EEG

New Diagnosis

I have created an email address for Ethan a few years ago and from time to time I email him about everything - his first plane ride, when he started stacking blocks, his milestones and just because. Here's one email that I'd like to share as my first post, this new diagnosis inspired me to start blogging. :)

Dear Ethan, 

It's Momsie! Yesterday you were diagnosed with Autism, we went to an ASD evaluation office in Oakland. They looked at 2 things - your social skills and repetitiveness. Your strength was on Social skills, however, you've met the checklist on the Repetitiveness category, we've also raised our concerns about it - how you love opening and closing the microwave door, turning on and off the light switch, opening and closing doors, saying things randomly, etc. Momsie doesn't like the label but it's the only way we can get more services (seriously we need more? haha). I'm slowly accepting it and you know what? Autism and none of your diagnoses define you, you're still the sweet crazy little Ethan that I know of. :) When Ms. M and Ms. J initially saw you they thought, there's no way you are on the spectrum because you were very friendly, you have great eye contact, they said your case is tricky because they don't know if some of these symptoms stem out of your medical condition. Mrs. T, your teacher couldn't believe it either but my love, don't let it define you, keep chasing your dreams. We will keep fighting!

I'm so sorry if we are hard on you sometimes and we easily get upset with your behavior, Momsie should know that it's not something you intentionally do. I promise to be a more understanding mom. I'm sorry too if your day is busy with therapies and medical appointments instead of just running around in the playground, writing, playing with your friends, reading a book, building Legos, playing with cars and trucks like a typical 4 year old. In time you will. We just got to deal with it for now, I promise it will help you in the long run so please hang in there buddy! Never ever give up because we never have and we never will! Momsie, Daddy and Emma love you so so much! We are always here for you and we are eternally grateful for your love. Thank you for teaching us so many things we never thought we're capable of.

SO... Autism - welcome (well not really) to Ethan's portfolio of diagnoses (you are diagnosis #7!), help is on its way so bring it on!

#TeamEthan

Another seizure last night!

Ethan had a seizure last night (4/24/2016) at around 9:37 pm. It lasted for about 4 minutes. We didn't give him any medication like Diastat, we just let it run its course. His left arm was moving up and down uncontrollably. I woke up my husband and he laid Ethan on the floor on his left side making sure his airway is clear. He vomited his dinner and he felt much better. He was conscious afterwards. Not sure what happened exactly but this time it wasn't related to a fever. This is the first non-febrile seizure he has ever had. I emailed his neurologist to possibly order some CT scan or EEG. I'm still puzzled on what happened and scared that it might happen again in the future. The first (which I thought would be the last too) one he had was back in 2/15/2016.

I love you Ethan and hope you feel much better. We're always here for you.