Our bright side of Sheltering-In-Place

Holy Moly, my last post was about almost 4 years ago! What can I say? Life is hectic! Last year, we had another baby who is turning 15 months old in a couple of days! Time flies!

Anyway, it's pretty crazy, mid March we were vacationing in Kauai and when we came back, everything changed overnight - sheltering in place was ordered, pretty much a lot of public places are closed and sadly a lot of people got infected with COVID19 aka corona virus. So I wanted to write today because despite of the bad news we hear and see - we have good news on the home front. We reached a very important milestone in Ethan's progress that perhaps shelter-in-place helped with. That is... drum roll please... Ethan is potty trained!!!! WOOHOO!!!!

Finally, after many years of potty training - working with the school and his behavioral therapy team, he finally did it! He's turning 9 this Fall and we were starting to think if he'd always be in a diaper, it's also not uncommon for kids with cerebral palsy to not be potty trained at this age.  He's mastered #1 maybe a year or two ago, #2 was really a struggle for him and for me, he would come home from school with soiled underwear at times and it never bothered him. Taking him to the women's bathroom when we're out in public has also started to become very awkward.

So how was our potty training saga like? In the past how many years, we've been sending him in underwear probably since he was in kindergarten (he's currently in second grade) but we would go back and forth, underwear one day, Pull Ups the next day. I would put him in Pull Ups because didn't want to deal with the mess of cleaning him up, we threw away so many underwear and it was just so frustrating so I thought to myself, well, maybe Ethan is not ready yet. He's always had his own timeline achieving other milestones so I'll just work around his schedule - pick my battle kind of thing. It's not the end of the world if he's not potty trained.

So, my mother in law and I tagged team on this since he's home anyway, we basically told him he can use the computer (great motivator) if he goes #2 in the potty, we went with him to the potty numerous times when we see 'the signs' - whether he would go or not, we really just wanted him to sit on the potty for at least a minute. When he sits, I would give him a reward just for sitting. It was hit or miss (mostly miss ;) ) and we didn't pressure him but we constantly reminded him that if he goes, he gets computer time. We also committed not putting him in Pull Ups, maybe he was getting confused with the back and forth underwear one day, Pull Ups the next day. So we repeated this cycle a million times (I'm not kidding!) and just one day he said he needed to go #2 and the rest was history. :) The key thing that I learned is definitely consistency is key and not to stress about the process, it's difficult not to but with lots and lots of patience and positive attitude - it finally happened!

So finally more than a month of him consistently using the potty and no more diapers - I have officially declared that Ethan Jacob is potty trained, hooray! What amazes me was he would stop doing a preferred activity to use the potty which was a sign that he finally gets it! It's been a long journey but here we are, he met an important goal that he's been working on for over 6 years and despite of our unusual pandemic situation, this is something positive that came out of it.  Our premature miracle baby boy can pee and poo all by himself. He's a big boy now.

So... thank YOU to his village of super duper awesome care team who has helped us with Ethan's progress! We could have not done it without you. And also, thank you Ethan for teaching us that anything can be accomplished with patience and reminding us to put things in perspective. We love you so much and we couldn't be more proud of your accomplishments. Like what we always say, Never ever give up because we never had and we never will.

This alone was worth sheltering in place in my opinion! ;)

He loves bow ties!

His well-deserved computer time! :)

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!