Happy 5th Birthday, Ethan Jacob!

Dear Ethan,

I'm a bit emotional today as I look back 5 years ago. Has it really been 5 years? I can't believe it. You've had challenges early on in life, we were hit with diagnosis after diagnosis, numerous medical appointments, countless therapies of different kinds, a crazy 911 call, and yet here you are standing tall.

When I found out I was pregnant with you, I was so excited, I couldn't wait to hold you and teach you all the things I experienced as a child, but you had a different plan. You instead taught me how to be resilient at times when I thought I would break. You taught me how to become a better person, you taught me how to appreciate and value the smallest things in life, you taught me the meaning of life that no matter what life throws at you, it's all good... (just like Pete the Cat, remember?) That was your plan after all!

Happy 5th birthday my love! Never ever stop chasing your dreams because we believe in you. Never ever give up because we never have and we never will.

Love,

Mom

PS. Btw, good job blowing out the candle! Good OT work you got there. Hope you had fun celebrating your birthday today at school, at the daycare and Chuck E Cheese. Hope you and your lil sis Emma will enjoy Disneyland as well! :)

Thank you for my chocolate cake, Tita Nerie!

Who would have thought Ethan blowing out the candle would make me so happy? 

To My Husband, Happy Anniversary!

This is what I received at my work email this morning...

"I love you honey bunch, keep smiling because that’s what makes you beautiful.  Our children don’t know yet how lucky they are but trust me they feel it because they’re always clinging to you lol.  Ethan will be fine, he’s getting a lot of help so don’t let his outbursts get to you, in due time he’ll be able to control it."

Last night I was crying, I was overwhelmed with my work and home responsibilities. My in laws went home to the Philippines for a family emergency, they primarily watch both our kids - 3x a week - Wednesday to Friday. They take Ethan to his therapies. They're a huge help and I couldn't be more thankful and grateful for them. Now that they're away, I had to adjust my work schedule, I work from home Monday afternoons and Fridays so I can tend to Ethan's therapies. Because of this schedule, my workload is increasingly piling up. I need to better manage my time. Or maybe I just need a break?

Anyway, my husband has been doing the same. He also tries to work from home on Fridays and take Ethan to his appointments. We're so lucky to have the flexibility with our jobs. Our family's journey isn't easy, raising our child with special needs requires a lot of patience, strength, and unconditional love. We both have to roll with the punches because each day brings a unique set of challenges.

My husband is my strength and he makes me smile with a phone conversation that we just had:

H: Hey Hon, I'm getting wings for dinner
W: That's good but I have to take Ethan to his therapy after work so I'll see you after
H: Oh crap I forgot about that. Btw, I ordered 15 pcs of flaps
W: Really you can order just the flaps?
H: Yeah apparently you can, it's just 10 minutes longer. That way we don't have to fight for the flaps.
W: Haha great!
H: See honey? That's what I do. I improve your life by ordering the flaps.
W: (I don't know why I found it funny but I was laughing like crazy)

Stupid maybe silly conversations like that matters a lot, it makes us laugh and it's true - he improves my life. (OMG, did I just say that?!) He found my current job, he maintains our cars, he finds my phone everytime I can't find it, he cooks for our family, he drops me off and picks me up from work, he proofreads my emails, he's my walking dictionary (or wikipedia in this generation), he updates me with current events. What else can I ask for? He's my personal assistant! LOL Don't get me wrong there are days when we argue a lot or I just want to smack him in the head but overall he is my everything. He makes me smile on a bad day and I know he got my back. I will never get through our son's journey without him. SO, Happy 5th Anniversary my love! Thank you for everything! There's no other man I would want to spend the rest of my life with than you. I love you.

Stanford Developmental Pediatrician Consultation

We visited the Stanford Children's Hospital last Tuesday - August 23rd for a consultation with a Developmental Pediatrician. We waited almost 4 months to get this appointment and my husband and I took time off work to take Ethan to Palo Alto taking almost 2 hours in rush hour traffic.  We weren't sure what to expect, perhaps it was to hear something different about Ethan's development that we hadn't heard before, secretly hoping that they would have a magical answer that would unlock our son's potential. Wishful thinking that abruptly ended when Dr. Loe expressed concern about Ethan's plateauing milestones and a wall he seems to have hit.  The value in our visit was this reality check and subsequent discussion of what our rights were as parents in the IEP process.  We had no idea that by law, assessments by the school district should be done every three years; it had been over 2 years since Ethan had a formal assessment. We felt that we have wasted the last 3 years of Pre-K not questioning why the school seemed so nonchalant about Ethan's lack of progress, this whole time we should have been pushing for more services, trying new things, not being afraid to push back and demand the best for our son.  As parents it is our responsibility to be his advocate and voice when the system tries to pretend everything is ok, the harsh reality is that in a system full of bureaucracy and red tape we had let him down. This was a wake up call and lit a flame under us to research the heck out of what our rights are in the IEP process.  We realized that day that Ethan needs us to be a stronger voice for him and that we won't stand idle when either the county, school district, Kaiser, insurance companies, whomever tries to slow us down.  Even though the development pediatrician didn't really tell us anything new about our son's health that we hadn't already heard, it was us who developed a little bit as parents.

Ethan's First Day of School for SY 2016-2017

Ethan started school on 08/15/2016. He also attended the Extended School Year aka Summer classes. This is the 2nd year he is in this program. He is no longer taking the school bus which he really enjoyed in the previous years. Instead, he's taking a 'shuttle' going to school, it's like Uber for kids. Our school district changed the transportation company. I like this new transportation company because they shuttle Ethan using a car with a car seat and take Ethan to his daycare after even if it was in a different city and county. How convenient is that! We no longer need to put the safety harness on him everytime he had to ride the school bus and my husband and I no longer used to take turns picking him up from school and taking him to daycare after. It works so well with our work schedule. I hope Ethan progresses in school enough to be in Kindergarten next year. Here's his picture sent by his teacher on his first day!

Our First ABA session

We had our first ABA session on Monday (July 25th) from 530-830 pm. The BI (Behavioral Interventionist) - Ms. Ashley and the Supervisor - Ms. Yan both came over. Ethan said hi to both of them immediately as soon as he saw them. Ethan gets 12 hours per week of ABA therapy directly. The number of hours was determined based on the Vineland-II Adaptive Behavior Scales and the Functional Assessment Screening Tool (FAST) both from us filling out the forms and the evaluator observing Ethan. According to Ethan's evaluation report from ACES (the company that provides ABA services), the Vineland II has 4 domain areas: Communication, Daily Living Skills, Socialization and Motor Skills. FAST is an indirect assessment of behavioral function. The instrument yields summary statistics for four categories reflecting the behavioral functions of social positive (attention/preferred items), social negative (escape from tasks/activities), automatic positive (sensory stimulation), and automatic negative (pain attenuation). These are too technical for me to absorb! LOL 

For example, we have expressed mouthing as a behavior of concern. Ethan just likes placing an inedible object in his mouth (buttons, corners of shirts, fingers, etc). The frequency of mouthing is estimated to be 5 times per hour. Based on the results of the FAST, the primary potential source of reinforcement of mouthing appears to be automatic positive (sensory stimulation).

Potential Source of Reinforcement	TotalSummary-Mouthing
Social Positive (attention/preferred item)	1
Social Negative (escape from task/activities)	1
Automatic Positive (sensory stimulation)	3
Automatic Negative (pain attenuation)	0

Based on the results above, the treatment goal is to decrease mouthing – by December 2016, Ethan will decrease the frequency of mouthing behaviors to an average of no more than 2 per hour across a three month period. His baseline was 5 times per hour. What's the treatment plan? I don't know yet! Haha I have yet to talk to the Supervisor about it. As soon as I find out, I will share that information.

These are the approved hours:

Behavioral Interventionist-BI  (1:1) ABA Intervention	Direct	12 hours/week
Supervisor (Supervision and Parent Training)	Direct & Indirect	11 hours/month
BCBA Supervisor (Program Development)	Direct & Indirect	2.5 hours/month

Based on the above table, this is not just a therapy for Ethan but it’s also for us – his parents too. Parent participation is key to the success of all of this. We need to stay consistent with the program. The 12 hours per week doesn’t have to be at home all the time, we can have the BI go to the community with us like parks, groceries, restaurants, etc. ACES also offer WABA (Weekend ABA) which is a 4 hour program on Saturdays where we can drop off Ethan and it will be in a group setting along with other kids in the program. They also offer a monthly 4-hour outing with the families like going to the Jelly Belly factory, Tilden park, etc.

Anyway, going back to Ethan's first ABA session, the Supervisor prepared a binder (aka Workbook) for  Ethan with visuals. They went through several pages including matching the head and body of Mickey Mouse Clubhouse characters (which he loves by the way!). To my surprise, he was able to do it. They also introduced the token system, if he completes 2 activities whether it be completing a puzzle or matching, he gets a token. 2 tokens = reward. He was motivated to keep going because he gets 2 minutes of iPad or a fruit snack, etc.

Ethan's Binder / Workbook

Ethan completed this puzzle

Ethan trying to trace with Ms. A's help

His first day went really well and he responded to Ms. A and Ms. Y. He never threw a fit, no tantrums with them. He reacted very differently with them than me. When I was trying to take the iPad away, he was screaming at me but if it was Ms. A or Ms. Y, he never did. It made me think about our parenting skills. Ms. Y recommended for us to always talk to him first and set a timer before letting him use the iPad, a conversation similar to this:

Mom: Ethan, I’m setting the timer to 5 minutes, when the time is up, you have to return it to Mom OK?

Ethan: OK

Mom: What happens if the timer is up?

Ethan: Give it back to  Mom

I tried it, still it didn’t work. He still cried and held on the iPad until I had to take it away from him. I guess, we’ll have to just keep practicing. If he can behave with the BI, I know he is capable of behaving with us too.

Another thing too was the BI uses the iPad to collect data. Ethan has 23 treatment goals (8 from Behavior, 6 from Communication, 3 from Daily Living Skills, 6 from Socialization), Parents have 4 goals for a total of 27 combined goals to be met by December 2016! That is a LOT!!! Anyway, there’s an app that lists out all of Ethan’s goals and every time they have a session, the BI marks the goals whether he has met them or not which is great because we can definitely measure his progress or in which areas he needs help on.  This electronic form of collecting data is a distraction for Ethan because he’s into electronic gadgets! The BI was nice enough to just write down the goals in a piece of paper and record data from there.

This is a long post for me but just wanted to share our first session! ABA is not an overnight thing, it takes a lot of practice for us to succeed and I know we will get there at some point. I am optimistic about this program. 

Our ABA application timeline

We are finally starting Ethan's ABA therapy next week exactly on July 25! After following up several times from different companies because our insurance (Kaiser) contracts a company (Easter Seals) who takes care of therapies who in turn contracts another company (ACES) that provide the actual ABA therapy, here is our timeline:

4/26 Diagnosed-results came out right after the appointment
5/24 Easter Seals Intake-just mom and dad being interviewed
6/1 ACES Intake 1-they observed Ethan at their office
6/2 ACES Intake 2-they observed Ethan at school
7/6 Kaiser authorized ABA services
7/8 ACES Debriefing
7/14 ACES Intake with Case Manager and Supervisor
7/25 First ABA therapy appointment

It has been a long process, 3 months to be exact but we are finally receiving services after so many follow ups. More updates next week!

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.