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Cyndi's Blog
Half & Half ~ 7.25.2024
In addition to the usual morning wake-up call by Little P, I got group texts from neighbor moms on my street about the power being out the whole day due to “scheduled” construction work by our power company to replace an entire electricity pole on the major cross street from our street. I realized too late that the email notifications I had gotten from my electricity company 2 days ago were probably something I should have paid attention to, but the last week had been so busy that I barely read it and certainly didn’t digest it enough to realize the impact of it thoroughly.
No toaster for breakfast bagels with cream cheese that Cool Cat C eats almost daily, no microwave to heat up lunch or snacks, no power for the fridge, no wifi for TV streaming services, and Cool Cat C’s computer with Roblox and worst of all, no AC in the middle of our July heat wave!
First, Little P and her PA, Green Carr, left for her last day of music camp at 9:30 a.m., where there was AC. Next, Daddy Dog left for Jujitsu at 10:30 a.m., where there was AC next. That left me and Cool Cat C, who are both NOT morning people. However, I am up much earlier for work than Cool Cat C, who sleeps until 11 a.m. or even noon during the summer right now. I even had to move Cool Cat C’s Executive Function and Social Skills coaching (both funded by SDP) from 10:00 and 11:00 a.m. to start AFTER 1:00 p.m. to ensure that she was fully awake, finished eating breakfast, teeth and hair brushed BEFORE her coaches arrived at our house for her in-home sessions, as there were a few initial sessions where Cool Cat C had to finish eating breakfast, stayed in PJs and hair not fully brushed at the beginning of her coaching sessions, before her break.
Since it was already getting hot, I dragged Cool Cat C out of bed by 11:00 to head out for breakfast. She did not want to get out of bed, but I told her that it was going to be very hot in the house without AC, and there was NO wifi, so we had to leave. In the car, I asked Cool Cat C if she wanted pancakes or waffles, and she said waffles. I decided to go to a local cafe across the street from the library because Daddy Dog and I really liked the food there, it had coffee for me and Cool Cat C never tried it before.
Unfortunately, the cafe did not have waffles, so Cool Cat C ordered the Orange French toast, the only French toast option on the menu. While Cool Cat C usually likes French toast, the Orange option at the cafe was not a hit, so I gave her half of my Banana Walnut Pancakes after I took off the bananas and walnuts on top of the pancakes because Cool Cat C did not like theme. I also gave her some of my hashbrowns, which is one of the foods she tolerates. While both Cool Cat C and Little P eat a decent variety of foods, but still quite restricted compared to neurotypical children. So it was a win when I realized that the pancakes still have walnuts inside the pancakes that she now devoured.
After I ate the rest of Cool Cat C’s Orange French Toast and Cool Cat C had the rest of my banana walnut pancakes, I finished my Latte while working on Clover Advocates from my laptop using the cafe’s wifi, and Cool Cat C texted with her friends on her phone. She was also grooving a bit to the music at the cafe. After about 15 minutes, we ordered the Very Berry Snow Creme for dessert to share. I ate the blueberries because Cool Cat C didn’t like them, while she ate the strawberries and raspberries.
After dessert, we went to the library across the street so Cool Cat C could check out some books there, and I could continue my work with wifi and AC because the power was still out on our street! But Cool Cat C was not interested in the books much and continued texting on her phone. We ran into Cool Cat C’s friend and neighbor on our street at the library, so she went to sit with her at a different table to read some books, draw, and text each other on their phones to keep quiet in the library.
I texted Green Carr to get Little P some lunch after her music camp and then meet us at the library so she could check out the books before Daddy Dog met us to take her to her afternoon therapies. But when Little P arrived at the library she was being a little loud, so I decided to take her to a sensory art place across the street that I had driven past many times and meant to check out for Little P since she loved sensory play. The owner there gave us a tour, and I found out they were already a vendor of Little P’s FMS provider so we signed up for 2 weeks of trial lessons covered by her SDP budget.
SDP Family Tip: When visiting social recreational spaces such as kids’ play gyms, swim clubs, sensory play areas, art schools, etc. ask the managers and/or owners (if they are present) whether they take SDP funding, and if they are already vendored with your FMS provider. If they are not, you can explain that they just need to complete a short online form with your FMS provider and sign up for manual checks or ACH payment deposits, and they can bill for membership or lessons in advance.
I texted Daddy Dog to pick up Little P in front of the sensory art place and headed back to the library to pick up Cool Cat C to get some Boba because the power was still out at our place at 5:00 p.m. We finally got home at 5:30 p.m. to meet Green Carr so she could take Cool Cat C to her evening play therapy and back into the blessed AC. And Daddy Dog and I headed out to get a quick dinner before picking up Little P from her afternoon therapies.
We got back with Little P around 7:00 p.m., and the power was still out, and according to my neighbor moms text, until 9:00 p.m.! So I got out all the candles to put around the house before it got dark, while Little P followed me and blew them out right after I lit them, singing the “Happy Birthday” song. So I told Daddy Dog to take Little P to our deck for some water play. We have sprinklers on our roof because we live in a fire zone, and when they are on, it’s like raining on the deck.
After the water play, I gave Little P a bath, she changed into her PJs and laid on the patio loveseat on the deck with her tablet and blanket because it was too warm in the house, but cool on the deck after dark. Cool Cat C came back with Green Car around 8:30 p.m. after play therapy and dinner and went into her room, with the windows open.
Finally, the power and AC came back on at 9:05 p.m. and Little P could go back to her room to sleep. And I started cleaning up around the house.
Date Night ~ 7.20.24
(Guest post by one of Little P and Cool Cat C’s PAs funded by SDP: Mary Poppins, Jr.)
Tonight, I provided respite for Mommy Panda and Daddy Dog who went out for their first date night in 6 months!
SDP Family Tip: Special Needs parents can leverage PA to spend some much-needed quality time together.
I got to bond with Cool Cat C today whilst making one of the foods she loves, waffles! The best part: we had them for dinner! Cool Cat C and I got to work right away once I arrived. She helped me retrieve all of the ingredients for the waffles whilst I dug through the pantry looking for the waffle maker. We measured out our ingredients (which turned out to be quite the mess) before I poured the batter into the waffle maker. I was delighted to learn that I could make two waffles at a time! Cool Cat C melted some butter while the waffles turned a beautiful golden brown. She devoured both waffles while I wiped down the mess we made on the counter. Seeing her bring her cleaned-off plate to the sink was well worth the mess I cleaned.
Little P was exhausted today. The power was out at the house last night, meaning Little P was in bed way later than her regular bedtime. Luckily, she didn’t have music camp, so she was able to get more rest. However, by the end of the day, she was ready to go to bed. She drank so much water in the afternoon, that she used the bathroom quite a bit more than usual. After a couple of bites of some waffles, she was ready to head up to the bath.
Normally while I’m bathing her, she enjoys it when I pour water over her whilst counting “1, 2, 3!” She will repeat the counting when she wants me to pour water over her again. But tonight she asked me for “more water please,” immediately bringing a smile to my face. She was able to verbalize what she wanted, just another manifestation of her ever-growing progress. We got through the rest of her night routine pretty quickly, ending with us reading one of her favorite “Pete the Cat” books: Pete the Cat: I Love My White Shoes.
Little P really enjoys reading and goes through phases where she’ll want all the books in a particular series, like Eric Carle, Dr. Seuss, Mo Willems’ Elephant and Piggie, and now Pete the Cat. It continues to amaze me how quickly she learns the words of the books she enjoys. It’s so rewarding to listen to her read along with me, her words becoming more and more clear as the weeks go by. Tonight she said “good night” quicker than other nights, which truly fills my heart with joy.
I finished up washing the dishes and folding the laundry while I waited for Mommy Panda and Daddy Dog to get back from their date. I hoped that they were truly able to take the night off, not constantly plagued by thoughts of all they needed to get done tomorrow or what didn’t get done today.
First Day of Music Camp ~ 7.16.2024
Little P has always loved music and recently we’ve been taking her to a local music school because she’s been interested in trying to play the piano in our house. When I found out that there was a summer camp that teaches kids in Little P’s age group the basics of different instruments, so she can “pick an instrument,” I jumped at the opportunity to introduce her to more instruments that she has not yet explored.
To ensure that she had adequate support in this inclusion music camp, Little P’s Community Living Support Worker PA, who was also mentioned in my Beach Bunny post on 7.13.2024 will be providing 1:1 personal assistance during camp.
The camp consists of four 25-minute lessons with four different instruments:
Piano
Baritone ukulele
Drums
Recorder
The piano was the first instrument Little P and her PA tackled. At the beginning of the class, the teachers made an effort to always seat them close to the door in case Little P got dysregulated and needed time to calm down away from all the noise, so they had already set up two stools next to the piano closest to the door. At the piano, her aide noticed that if Little P was sitting on the stool close to the neighboring piano, she would reach over to play it, so her PA decided to sit in between Little P and the neighboring piano.
Next was the baritone ukulele with 4 strings. Little P had little interest in the instrument at first, fixating on the drum set close by as she would prefer to play that instead of the oversized ukulele. So her PA dragged over the drum set, which was foam so it didn’t disrupt the rest of the class who were learning how to make different notes on their giant ukulele. As a side note, Little P went through a ukulele phase when she first watched Moana and broke 3 of them by using them as skateboards instead of as musical instruments! And she was getting frustrated with holding down the strings for the right notes. Once regulated, the PA held down the notes the teacher was teaching as Little P strummed the ukulele.
Third was the drums, which Little P enjoyed the most out of all 4 instruments. Little P took one drumstick and the pedal for the “base drum” (a foam block that’s hit by a hammer attached to the pedal) and the PA took the other. There wasn’t much of note other than Little P getting a little too excited and having trouble sitting still and coming dangerously close to knocking down the drum set, so the PA helped her calm down with some deep breaths.
The last instrument was the recorder, which Little P enjoyed blowing into but struggled with controlling her breath and blew so hard that it made horrible screeching sounds. Additionally, the constant starting and stopping to get new instructions was escalating Little P as she just wanted to play the instrument and had trouble understanding that there were times when she needed to stop playing so they could all get new instructions. Little P began asking to leave, and after several unsuccessful attempts to get her to regulate herself in the class, her PA had to take her out of the class so she could have a little bit of quiet time before the end of the camp when the kids played some standing drums.
Even with some points of dysregulation, the camp went relatively well on the first day, and Little P lasted the whole 3 hours…with support! And if you’re wondering how I could write this post about Little P’s first day of music camp when I wasn’t there because it was during my working hours (too bad adults don’t get summers off!), I got a full report from Little P’s PA and she even helped me put together this music camp guide in case another caregiver needed to support Little P at music camp because she had a doctor’s appointment or was ill once of the days of camp.
Having a 1:1 PA or aide to support your child in social recreation and/or community integration activities, especially if they can’t advocate for themselves, is essential to help them stay regulated, facilitate redirection if necessary, and reinforce impulse control. I was able to fund Little P’s PA and music camp through my SDP budget, and if you would like my support in securing these resources for your loved one, check out the Clover Advocates Family Services webpage and fill out our intake form to get started!
Beach Bunny ~ 7.13.2024
As the heat wave hits Southern California, natives usually enjoy a fun beach trip to one of the many beaches along our coast. Whether it’s playing in the water, building sand castles, taking a nap with plenty of sunscreen and under a tent, and/or checking out activities around the beach like Santa Monica Pier's famous amusement park, there is something for everybody! The only challenge is actually getting there. Getting packed up with everything you might need, attempting to find parking in overcrowded parking lots, and hauling all of your stuff down to the perfect spot on the sand has been enough to push Daddy Dog to say “no” to ever going to a “crowded beach on a weekend,” which is basically every beach near us and only time we can go with my work schedule and the children’s school and therapy schedules! And then there’s the unique challenge of asking children with ASD to tolerate the traffic, crowds, and public bathrooms!
Both Cool Cat C and Little P love the beach. Cool Cat C already went to the beach with her friends in June, but Little P was not able to go because Cool Cat C did not want her annoying little sister to tag along and possibly make us leave early because she was over-stimulated.
So to make sure Little P also got a beach day, I took her to Manhattan Beach in July. But I didn’t do it alone! I brought Little P and Cool Cat C’s Community Living Support PA (previously nicknamed Cool Cat C’s Super Awesome Babysitter by her friends but now just Mommy Panda’s PA and Little P’s babysitter because Cool Cat C is too old for a babysitter) to make the trip more manageable. After loading the car with our towels, change of clothes, beach chairs, and tent borrowed from my neighbor down the street, we stopped at the grocery store to grab some snacks, lunch, and sand toys for Little P. Much to Little P’s disappointment as Ralphs is, in fact, not the beach.
After getting the food and being unable to find sand toys, I improvised with a substitute beach ball (it was just a regular bouncing ball) to help Little P tolerate the detour, we set off to the beach where we encountered yet another challenge: finding parking!
Little P was less than amused by us weaving through the streets and circling block after block to find parking. She could see the ocean, it was right there, and she was beginning to become frustrated that she couldn’t just go there right now. So, to avoid the impending tantrum, I double parked when there was a red light, and sent Little P’s PA to take her to the beach so she could play while I continued to look for parking. 40 minutes later, I found parking and lugged 4 bags of our beach stuff and the tent to the beach to find Little P and her PA.
After finding LIttle P and her PA, I struggled to set up the beach tent with her PA because I borrowed it from my neighbor so I had never set it up before. Little P played in the sand next to us, and some good Samaritans asked if we needed any help, which we did! After they helped us set up the tent, we sat down to have lunch and my PA told me that Little P was calling herself a “Beach Bunny” and hopping around in the water before I arrived.
After lunch, Little P and her PA went back out into the water to play some more while I worked on my cell phone from the beach tent. I was working on Clover Advocates emails, marketing materials, and training, as starting a business is 24/7 work! I had a straight line of sight to Little P and the PA, who happened to be a previous junior lifeguard, so I felt confident in her skills in watching Little P in the water and keeping her from straying too far into the waves. I saw her picking up Little P to take her deeper into the water when Little P asked, and was grateful that it wasn’t me putting out my back to positively reinforce Little P for verbalizing her needs; the PA is almost 1/2 my age, and the daughter of a family friend! After they were finished with the water, we met up with one of my friends for dinner and then headed home.
Having a Personal Assistant or Respite Worker is such a gift for parents or other caregivers of special needs children, especially those that need almost 24-hour care or routinely have sleep issues so the parents / caregivers are perpetually sleep deprived. Indeed, Little P didn’t sleep through the night for 5 years, and even after that, she would still wake up randomly at night or before the crack of dawn with no warning (read The Rooster post from 6.29.2024 below).
If you would like to learn more about Respite and how to get a much-needed break while you’re loved one is safely looked after, check out my Understanding Respite presentation and fill out Clover Advocates’ quick, 9-question Family Services Intake Form so we can assess how we may best support you!
Accurate Family Picture ~ 7.4.2024
Taking family pictures or any pictures where on, much less both children are looking at the camera is a major challenge. Cool Cat C doesn’t want to look at the camera and hates posing. Little P moved around so much there was always a blur in the pictures. Daddy Dog always looked awkward smiling, and I struggled with finding the right angle so my long hair covered somebody’s face!
So when Cool Cat C was 7, she decided to start drawing our family portraits to escape family picture time during the special occasions that I wanted to capture with photos: birthdays and holidays!
I do have some great family pictures that took a lot of effort, but I do love Cool Cat C’s family portraits from Moon’s Art, her artist pseudonym from when she loved Sailor Moon. The details are quite impressive:
Daddy Dog and Cool Cat C have brown hair because they do indeed have reddish brown, auburn hair. Cool Cat C got her father’s hair.
Little P and I have black hair because Little P had very dark brown hair (almost black) when she was younger and during the time of the portrait.
Daddy Dog has short hair and a baseball cap that he wears all the time when he has no time to put some product in his hair.
Little P is the smallest and Mommy Panda is the biggest. Daddy Dog may be taller than me, but Mommy Panda has not lost the baby weight since the first baby, so I am indeed still the biggest.
And here’s the Accurate Family picture 2 years later, when Little P has gotten taller and louder, the little girl screaming “Eeeee”, Cool Cat C proclaims her love for cheese and Daddy Dog has lost so much body fat through 4 years of Jujitsu that he is always “cold.” Then, there’s me, who always has “work, work, work, work, work.” After 20 years in the Corporate world, and 4 years working remotely from my home office due to COVID, Cool Cat C has labeled me as always working, which conjured up tremendous amounts of mom guilt.
As an artist, Cool Cat C, hand drew many holiday cards and most of them for me (birthdays, Mother’s Day, etc.) came with messages around the theme of “thank you for making money to take care of us.” I worked very hard and very long hours to ensure financial stability and comprehensive benefits to fund all the services my two children needed. But it stung whenever I thought of Cool Cat C only associating me with work. Rationally, I know that is not the case, but emotionally, I struggled with having both a career and mom of two special needs children.
Then, I started Clover Advocates with my partner and started pursuing it all:
Flexibility to set my own schedule to spend more time with my family.
Passion to help other families in their journey to secure critical services for their special needs loved ones.
Opportunity to leverage my Corporate background to build a mission-driven business with colleagues that I truly respect.
Having worked for multiple start-ups in our Corporate experience, my partner and I are loving the journey to build a business from scratch that is truly ours! We even have 3 summer interns on our team this year…check out The Clovers team intro to learn more about the talent behind Clover Advocates, LLC!
And going back to my little artist, Cool Cat C, SDP funds for art therapy and art classes to support her in pursuing her interests and dreams!
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