Distance learning

Owen has grown his love for drawing during this period and one day he decided to draw Covid. When I asked him how he came up with the image, he said it’s the image from the signs that are posted around town.

Everything and everyone’s life have been altered in some way due to Covid. Our last “normal” day was on March 12, 2020. I remembered it so well because that was the day when I took my dad to the airport and that was the last day when my kids went to school as they know it for their last 2020-2021 school year. Just like everyone else our routines have changed so much and so many times.

We have been here and we still are at the same place since almost a year ago.

I had just quit my job right before the start of this and I am not sure if it’s good timing or bad timing. It was good because I was able to devote all my time to the kids with distance learning; it was not so good because I did not have the time to pursue what I wanted career wise and therefore we did not have much financial stability as before. I am lucky that I am able to take time off to concentrate on the kids. It is a huge blessing and I am very thankful. But even so, I still want and will achieve the goal of what I want to do when I made the decision to quit.

I want to work in the field of accessibility where I can use my extensive knowledge from having 2 children with disabilities and incorporate into the world of technology. I have not pinpoint a specific title to the exact position but this is what I would like to do – being part of the accessibility design process, being an inclusion advocate, informing others of what technology is available that can help with their disabilities, and to be a parent advocate especially for the hearing and vision impaired.

I know there are many people that have been doing the work to support the disability community and it is only in recent years that I noticed the changes are really happening. Bigger companies (i.e. Google, Apple) seem to make more effort to include accessibility design as part of their standard design and they are more outspoken with their support. It is so great to see these changes along the side of inclusion for all. There are so much more to do and we can always do better. I want to be part of it. I have been an advocate for my kids since they were born. I have learned so much from their doctors, their specialist, and most of all from themselves. It is a great joy to watch your children grow and at the same time it is scary to imagine the world where I cannot always be there to protect them.

I have learned so much during distance learning with what my hearing impaired and vision impaired children need. I have learned how their tools are crucial to their daily learning. I have learned how technology can help their way of life based on their own disability. I have learned and I know that their tools need to evolve with technology constantly. I have the advantage to know it because I have 2 kids that show and teach me what helps them and what is hard for them. They are so used to going out of their way to accommodate themselves and I need to teach them to ask for help because things does not need to be hard for them, or not so much.

Outdoor Ed

Every 5th graders experience a week at Outdoor Ed with their school in CA. We have heard of it and we knew we wanted Milo to do it with his class. Milo attended his first away camp at Enchanted Hills Camp (EHC) two summers ago and he enjoyed it very much. EHC serves blind/low vision kids and we had no hesitation when we sent Milo there for his first time since we know he would be very well taken care of in terms of his visual needs. With the Outdoor Ed, we had some concerns, mostly logistic and we worked them out with Milo’s O&M teacher several months in advance to come up with a plan to get him ready along with his VI team at school.

Here was the list that we wanted more info on or had concern with prior to the outing:

  • What activities will there be starting at dusk and night time and where would they be in relation to his cabin (since Milo’s can’t see at night)?
  • If there is no bathroom in his cabin, what can be done to assist him to go out in the dark when he needs to go (and to make sure he won’t feel embarrassed)?
  • Can we request that he gets the lower bunk bed in his cabin for easy access?
  • There is a scheduled night hike they go on and instead of opting out, can he have someone (an adult) that will be with him the whole time. What other evening/night activities are scheduled?

These are the few questions that I had and I brought them up at his IEP before he started 5th grade. The school and his specialists agreed that Milo will get a full time aide with him during the whole trip and that Milo’s O&M will try to be there on his first day to get him situated and to let the staff at the site know of his VI needs. His O&M also took Milo on trails to get him familiar with uneven terrain. The school also put in a request well in advance for Milo to get a cabin with a bathroom and an extra bed for his aide to be in the same cabin with him along with his peers. Another suggestion that the school and us had was to to assign a close friend of Milo to be his cabin mate and group so that Milo will feel more relaxed knowing he can ask his friend for help.

Practice walking on uneven terrain with his O&M.

Milo was very excited for his trip and because of the amazing support we have from his specialists and from his school, we were so happy that Milo could join his class.

When Milo returned home, he was very happy with his experience and had more positive than negative comments. One of the main negative factor to his trip was the cold and wet weather especially when they went to the beach.

We are very lucky to be in an amazing school district where we never feel like we have to fight hard for his services. We always know that if we need anything, we can ask his team. We are always so grateful for his team and it makes me so upset when I know that it is not the case for a lot of kids and their families.

Milo’s turn

Milo decided to join the fun with Matilda and surprised us with having to have a last minute procedure after the holiday. He went in for a procedural check up with his retina specialist and it was discovered that he had about 150 bleeding blood vessels. It was an out patient procedure and it was only about 3 hours. Milo was excited because he was able to try out the new facility as Matilda.

The procedure went well and Milo woke up and had 2 of those yummie popsicles before being released.

Away Camp, checked.

 

We made the decision earlier this year to send Milo to his first away camp this summer. We never really planned for an age when he should be doing a going away camp until we were introduced to the Enchanted Hills Camp (EHC) last year.

Milo was a little apprehensive about going but we really didn’t give him a choice. We would consistently tell him that this would be a very exciting adventure for him and that he would be meeting new friends and he is at the age when he should be experiencing away camp. Milo has several friends that are doing it for their first time this year and I think that got him really excited about doing it as well.

One of the main reason we are sending him to an away camp because Milo needs to learn on being on his own and to do things for himself. Another big incentive is that this coming school year, his grade goes away for a week for Outdoor Ed. To ease Milo’s nervousness  (and mine), I was able to arrange a quick visit of the camp site prior to his stay. Due to the Napa fire last year, the cabins for the campers were destroyed along with some other facilities. EHC made some temporary tents for the campers and brought in some porta-potties (eek!). 

It was good that we were able to visit the camp site so that we know what we need to do to prepare and it eased both Milo and mine’s anxiety of what it will be like. 

I packed all of Milo’s belongings in clear 2 gallon bag so that he can see everything clearly. All the clothing that we packed are slightly stained or that he has almost outgrew so Milo doesn’t have to worry about getting them dirty or having to save them. I bought him a shower caddy to store all his bathroom related items (shampoo, lotion, toothbrush, washcloth, etc) so that he can just pick it up and go. I packed him some extra large garbage bags (for things he want to throw out) and a laundry mesh bag (for clothes he want to keep). Milo ended up throwing out all the clothing he wore so he pretty much came home with less stuff. 


Matilda and Owen saying “goodbye, we love and will miss you so much” hug before Milo and I go off to camp.

Milo and I having lunch before I drop him off at camp.

Milo spent a week at camp. He was pretty nervous when I dropped him off that day and I pretty much kept thinking and wondered what he was doing all the time and paranoid that I would get a call from camp. We both made it through the week and he was a happy camper when we went to pick him up. Phew! Milo survived and so did I. Milo took a very long shower after we got him and with fingers crossed, we hope all the rebuilding will be done by next summer at EHC.

Milo at pick up at Enchanted Hills Camp.

I plan to send Milo back to EHC next year and I do wish Milo could go on an away camp with his peers in a non visual impaired camp. But as of this moment, I do not think it will work well for Milo since a lot of the away camps involved lots of activities that would not be good for Milo or be difficult due to his vision impairment. And one challenge that I think Milo would have is to navigate around the camp site especially in the evening and night time when everything is dark and having no aid to help him. 

*EHC is an amazing program run by the LIghthHouse for the Blind and Visually Impaired and please consider making a donation to them. (I am asking on my own on this donation.)

My child could have (but didn’t) die and it’s because of my careless mistake.

I haven’t posted in a very long time. I am back because I want to share this recent incident that happened. It’s a true scary story. We found out Milo was allergic to peanuts when we introduced it to him when he was one year old. He is now 9 years old. He gets tested every year and he is still very allergic. Another known time that he had peanuts, aside from his first tiny dose at age one, was mistakenly given to him by his VI specialist at his preschool when we were not with him. Milo’s reactions were hives and profuse vomiting. EpiPen is always with us and we never had given it to him until yesterday.

I have been very vigilant at reading food labels since we found out he is allergic to peanuts. As the years gone by and with no incident, I have come to realize that I am not as vigilant as I used to be. I learned this because I was very careless and gave Milo a cookie that contained peanut paste. Yes, you heard me. I fed my peanut allergic child peanut. I made a horrible mistake and gave him a cookie without being thorough with looking at the ingredients. It was a chocolate cookie and by seeing that, it subconsciously gave me a reason to not have to be so detail with examining the ingredients carefully. It was wrong, very wrong. I was wrong, very regretfully wrong.

 

Milo had the cookie, got into the car and headed for hjs karate lesson. He felt bad soon after and my husband called to ask me if he ate something new. I said yes and right away I thought F—! and grabbed the box and started looking for the word “peanuts” and there it was “peanut paste.” F–K! was right. They came home and we gave him his Benadryl and waited out for his throw up. We watched for hives but there were none. This was the first time (thanks to me) that we are with him and actually know that he ate peanuts. We did not know how his body would react since each allergic reaction can be very different. It was decided we should take Milo to the emergency room because we read that anaphylactic reactions can happen hours from intake. Soon after Milo got into the car, he threw up and he informed us that his throat is very itchy. My husband called 911 and administered an EpiPen (for the first time ever). The fireman and paramedics came and took Milo to the hospital in the ambulance. Milo was still very chatty with all the firemen and paramedics so it was a very good sign that he was stable.

 

Milo stayed in the hospital for couple hours and since we are not too far from the hospital, he was discharged. Milo was a trooper and so was my husband. I felt horrible and full of guilt but none of them made me feel bad or said a word about what I did because of my careless mistake.

 

The day surprisingly went on like it was planned. Matilda had a pool party in which she attended and had a blast. She did asked me if Milo was going to die while I was taking her to the party. I told her that Milo will be okay because we took all the steps we needed to and if we didn’t, he could die. Owen was over the moon with having the firemen in our home along with the firetruck and a fire paramedic truck in our driveway. I even made it on time to Milo and Matilda’s back to school night (along with my sweaty self and an amazing amount of guilt and relief that Milo was okay).

 

The image of me not reading the instructions carefully kept repeating in my mind along with what if I can go back in time thought. I know I can’t do the latter and that is why I am sharing this with you all so that it won’t happen to you or anyone you know.

 

 

This is my story and luckily it has a happy ending. I learned a very important lesson and so did the rest of the family. Milo learned how serious his allergy can be and that it can be lethal. Matilda also learned how serious it can be. Owen learned that when Milo has a boo-boo, the firemen and paramedics come to our house. We all learned to be vigilant again. Milo learned to remind us about reading the ingredients and that he needs to read the ingredients as well and not rely on others (perfect example of how his mother cannot be trusted). We learned that we have to be more aware of others who also have allergies. My husband and I both learned that getting immediate medical help is the way to go, whether or not there is any immediate reaction.

 

It is very very important to take action when your child (or an adult) comes in contact with the food he/she is allergic to. It is crucial to go to the hospital. Reactions can take hours to happen and sometimes if you wait for a long time to do anything, the result can be lethal. It really is better to be safe than to be sorry.

 

Judgement or no judgement, I don’t care. I just want to share this because we all can get too comfortable at something that we shouldn’t. This is how I will end this post – Hi, I am a mom and today my child could have die because I got too comfortable with his peanut allergy and made a stupid careless mistake.

 

MY KIDS HEART EVERY REASON TO DRESS UP. THANK YOU HALLOWEEN FOR BEING YOU.

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1)  Raincoat: Hatley  
2) Matilda: Top: MiniBoden | Pants: Hanna Anderson | Shoes: Milo’s || Milo: Top: JCrew | Shorts: Target | Shoes:NewBalance
3) Top: MUJI | Pants: Hanna Anderson
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4) Milo as Robot 
5) Matilda wearing her last year’s bee costume. Milo wearing Matilda’s this year’s Foofa costume.        
6) This all happened after trick-or-treating when they were giving out candies to the trick-or-treaters. Milo as Chewbacca and Matilda just gave up on wearing pants.
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7) Milo as Captain America and Matilda as a garden gnome for a Halloween parade in town.
8) On the actual Halloween night, Milo decided to be Batman Wolverine and Matilda decided to be Foofa. 9) We were on the way from our house to trick-or-treat.
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10) Milo as Batman when I took him to walk around on the day of Halloween.
11) Milo with his Halloween crafty hat the week before Halloween.
12) Matilda sporting her mustache.

Halloween stayed and finally went bye-bye. We pretty much got excited about Halloween a month or so before the actual day and we made the mistake of asking Milo what he wanted to be for Halloween. It switched in a daily basis and when we took him shopping 3 weeks before the actual day, he decided he wanted to be Plex from YoGabbaGabba. Unfortunately the largest size they had was 3-4 years old. So, Milo picked Batman. For the next week or so, he bounced from Batman to Antman to Hawkeye and all the other superheroes. We told him that he needed to make up his mind and Captain America was his final decision. (We kept the Batman costume since Milo dresses up pretty often.) Matilda didn’t really care who she was going to be and being only 20months old, we got to decide for her. We chose Foofa from YoGabbaGabba. We would put Matilda in her costume several times a week to get her used to it but she really didnt care for it that much, so, I got her a garden gnome costume since its just a dress and she would be better about wearing it.

Both kids’s school had a Halloween party and we took the kids to town for the annual Halloween parade follow by trick-or-treating. We went to a pumpkin patch and did all the bouncy houses, haunted houses, pony riding and the train ride.

A week before Halloween, we practiced walking around our neighborhood with the kids when it was light out and when it was dark out. We wanted Milo to know what to expect, from getting used to walking in the dark and having decorations lighting around people’s houses. I highly suggest doing this with kids, especially with VI kids because it really helps to minimize his/her’s anxiety and the unknown especially the blinking/flashing decoration lights.

We ended up trick-or-treating at 7 houses! We are SO very proud of Milo and he was great about it. We were only going to go to 1 house but we did 7 instead. And he picked the house with very minimal decorations and no flashing lights of any kinds. Matilda did all of those and was very good! We came back to our place and Milo loved passing out candies to everyone and seeing all their costume.

We had a great Halloween and I am so proud of my superheroes. Milo decided to be BatmanWolverine and Matilda insisted on being Foofa on the night of Halloween. But for their school party, Milo was Captain America and Matilda was a garden gnome. Then again, it’s like Halloween at our home everyday because they love to dress up.

HELLO SUMMER | GOODBYE SUMMER

Hello! Hello! Hello! The summer came and went and somehow it’s has been so busy that I seriously have not had time to blog. But I am here now. Lets do a quick recap of our summer.

We did a bunch of fun stuff locally and Milo was in school as usual and Matilda had a longer break since her baby class ended in July. We had family members visiting with us for a short time and the kids enjoy their company.  Milo’s eyes have been stable and it’s great but at the same time, I have to think twice about it since its rare that nothing major had happened. (YEAH to that of course!)

My hubby took on our summer project of repainting all our bedrooms. I was of no help in the paint department because my job was to keep the kids away during the process. We did all the rooms in white and I am loving it. We purchased some new furniture for the kids’ room. Our room used to be chocolate brown and now it’s SO bright. We keep thinking that we turned on some bright lights but really, its just the white wall. It’s nice because it is bright for Milo when he is playing in our room. I  have to figure out all the decorations for all the rooms. It will take some time because I never seem to have time to do all the things I want!!

We ended our summer by going to a wedding of our friend and Milo had a blast because he is one dancing machine and he loved taking silly pictures in the photobooth.

I had a bunch of projects on my own and it was a challenge to illustrate what I needed but I did it. I lost some time because my back gave out on me for no reason and I was in pain for a week, then my right hand decided to swell up and it turned out to be some kind of arthritis and that took forever to heal and it still gets bad when I use my right hand too much which sucks a big one since I am right handed. (I guess my body is telling me that I am getting old!)

Here are a bunch of pictures from the summer and I am sure I have left out a bunch of stuff but I am sure you won’t miss it since you don’t even know what. And if I think of it, I will be sure to share at a later time.

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1) Milo: Top: Gap Kids 2) Matilda: Top: JCrew 3) Milo: Top: Sugarman | Pants: MiniBoden | Shoes: New Balance || Matilda: Top: Zara + MUJI | Pants: MotherCare | Shoes: Zara

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4) Matilda: Shirt: MiniBoden 5) Milo: Shirt: Uniqlo 6) Matilda: Top: JCrew | Pants: Target | Shoes: Milo’s || Milo: Top: KingKow | Pants: MiniBoden | Shoes: New Balance

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7+8+9) Matilda: Jacket: North Face | Pants: Target || Milo: Jacket: North Face
1011 12

10+11) Milo and Matilda wearing Matilda’s bumblebee costume from last Halloween 12) Milo dressed as Chewbacca
1314 15  

13) Matilda: Top: Mighty Fine tee | Pants: Target 14) Milo: Top: Mighty Fine tee | Pants: MiniBoden
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16) Matilda: Top: MiniBoden | Pants: Hanna Anderson 17) Milo: Top: Target | Pants: MiniBoden
19 20 21  
19) Milo: Top: Uniqlo | Pants: MiniBoden || Matilda: Top: Splendid | Pants: GapKids 20) Milo: Top: Mighty Fine tee 21) Matilda: Top: Old Navy | Milo: Top: Old Navy | Swim trunks: Hanna Anderson
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22) Matilda: Top: Splendid | Pants: Target 22) Milo: Top: Target | Pants: MiniBoden 23) Matilda: Top: MUJI + MiniBoden | Pants: Target
23 24 25
23+24+25) Milo: Top: Target | Matilda: Top: MiniBoden

Thank you Summer 2012, it was great to know you. We will catch you next year!
xoxo
me

TWO CUTE FOR WORDS.

  
Milo: Top: White undershirt from Marks and Spencer 
Matilda: Top: both top from Naartjie Kids

My two little munchkins are keeping me busy these days, but really good busy.

Let me tell you what we’ve been up to lately with all the pictures that I have taken with my iPhone. There are lots of pictures, but I figure that I have been lacking in posting about the kiddies, I might as well post a bunch now.

Milo: Top: Mini Boden | Shorts: Mini Boden | Shoes: Keen
Matilda: Top: JCrew kids | Pants: Mini Boden | Shoes: Zara Kids | Backpack: Stole from Milo by Sanrio
Both kids had an ophthalmologist appointment and everything is stable for Milo. As for Matilda, this is her first official check up and everything looks healthy. We had her eyes check because Milo’s ophthalmologist told us (not to scare us) that she could get the same conditions as Milo.

Left picture: Matilda: Top: JCrew | Pants: Janie and Jack | Shoes: Milo’s old shoes | Hat: from Costco
Left picture: Milo: Top: Mini Boden | Pants: Mini Boden | Shoes: New Balance | Hat: Anpanman
Right picture: Milo: Top: MUJI + Buzz Lightyear costume | Shorts: Gap Kids | Booties: Gap Kids
Right picture:  Matilda: Top: Milo’s old Mini Boden | Pants: Gap Kids | Hammer: Thor’s mighty hammer

The kids and I went to SFZoo right before July 4th and it was nice since it wasn’t very crowded. We did our usual of petting zoo, riding the Little Puffer, viewing of some animals that aren’t too far away for us to see and we ended with lunch. Another fun thing we did was inviting the cousins over for a big sleep over. The kids had lots of fun and they ended up watching The Secret World of Arrietty and Star Wars.

Left picture: Matilda: Top: Zara Kids | Pants: Gap Kids| Shoes: Salt Water
Left picture: Milo: Top: Mighty Fine tee | Shorts: Mini Boden | Shoes: Keen
Right picture: Matilda: Top: MUJI

Both kids passed out after our fun filled day spent at Piedmont with parade and hanging out with our besties on July 4th. Matilda had her first experience riding with Elmo when we shopped at Toys R Us.
Milo: Top: Gap Kids | Home Pants: Gap Kids 
Matilda: Top: Milo’s Mini Boden | Home Pants: Milo’s

Brother and sister love. Moment like this makes my heart melt and makes me wishes everyone can feel how I feel when I see the two of them together. Its the best of the best.
 Matilda: Top: Milo’s Mini Boden | Home Pants: Milo’s | Doll: Corolle

We got Matilda her first realistic looking doll and a stroller. It’s quiet hard to find one that does not look scary and Corolle makes pretty cute looking ones. 
Milo: Top: MUJI | Home Pants: Gap Kids 
                                              Matilda: Top: Naartjie Kids | Pants: Mothercare

Our house will not be the same if we don’t have dress up as our everyday life. Milo was some Star Wars character, Luke Skywalker or Hans Solo. Matilda is the cutest Ironman I know, way better than Robert Downey Jr. 
Milo: Top: Gap Kids
                                              Matilda: Top: Splendid | Pants: Gap Kids | Slippers: MUJI

We’ve had a pretty good few weeks and Milo loves to dress up everyday and be in character. Matilda loves to steal our slippers and walk away and act surprised when we find her with our stolen slippers. I love these two munchkins and I can’t imagine my life without them. I am so lucky that I get to be a stay at home mom because I would never want to miss a second of their lives, even those crappy, whiny and grumpy moments. 

NEW ADVENTURE FOR THE DAY.

Milo: Top: Zara | Pants: Mini Boden | Shoes: Yo Gabba Gabba Vans
Matilda: Jacket: Jacadi | Pants: Mini Boden | Shoes: Stride Rite

We took the kids to Bay Area Discovery Museum and it was super fun. We got the tickets via Groupon awhile back and I wish we took the kids there earlier. Milo and Matilda had so much fun exploring and playing. We went on a weekday so that it would be less crowded for Milo. Milo tends to do better when there are less people around because it’s more of a challenge for him visually to navigate when there are more kids running around him. We are planning our next visit back (maybe for Milo’s birthday next month) and it is so tempting to do the membership. If you have never visited, you really should go.