Category Archives: special needs tips

Distance learning

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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

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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.

  • Milo with his aide.

  • Cabin during his week stay.

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.

How we Disney our way around Disneyland.

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We decided last minute to surprise the kids with a trip to Disneyland since both Milo and Matilda had their surgeries and we wanted something happy for them, especially before Matilda’s next surgery.

We started the conversation at dinner with what we should do for this long weekend and ideas were thrown and my husband suggested going to Disneyland. The kids did not have much reaction so I said the same thing and the kids did not care much for it and went on suugesting local fun we could do. My husband and I gave each other glances of this is totally not what we expected and I had to say – “kids, we ARE going to Disneyland this weekend, really. We want to surprise you and that is what we are doing this weekend.” There was a pause and then Milo’s mouth was wide open and then I looked over at Matilda who had her head down and started whimpering and I said what is wrong? Does your ear hurt? She looked up and with tears coming down her face and in her crying voice, she said, “I am just so happy that is why I am crying.” I was so happy when I heard her say that! Milo’s reaction was screams of excitement; and Owen realizes what was really happening and started cheering. The kids had to ask us several more times to confirm that it is really happening and that we are going to Disneyland.

Matilda’s reaction is what you see on social media and I do not know how people capture those moments on their camera because if I had the phone pointing at her when we said it, I feel like it would ruin the real reaction. But her reaction was truly priceless and so social media on point.

  • Our usual first stop as we wait for our room at the Grand California Hotel.

Ever since we were told by Milo’s O&M (Orientation and Mobility) teacher to ask for the special disability pass for Milo, we have done so in each visit. The pass does not allow us to pass the general line, it’s more like a virtual line. We receive a return time for attractions based on the current wait time from one of the Disney crew. But with the DAS pass (Disney‘s Disability Access Service), we can enter the ride in the accessible entrance where it helps ease Milo’s anxiety since he does not have to worry about the crowd rushing to get on and off the ride in the dark and he has a wider space to maneuver with his cane. As he gets older, it also gives him a sense of independence where he can feel like he can do it on his own like everyone and not having us to hold him and rushing him through the crowds. We still have to give him verbal cue to find his way around and into the ride but it is with much more ease. But I have noticed that with each visit, Disney relation makes it a little more difficult for us to get the pass. Milo questions each time why I have to explain in such details as to why it helps him since in his eyes, he sees the need to use it especially when we are not trying to abuse it at all. I know it is one of those topic that is hard since there are people that do abuse it which makes Disney to be more suspicious each time. Tough call.

  • This is an example of an accessible entry to a ride: look at all that space and Milo is able to do this on his own with only some verbal queues.

As the kids get older I realize it is harder and more challenging for them to work their way into everyday life because sometimes we all forget of the possibility of invisible condition that someone might have. For example, when we eat at the hotel it is always buffet style. We walk through with Milo on where everything is and what has peanut (he is highly allergic to peanut) and then we let him go and get his own meal. Many occasions I have seen adults (not aware that Milo is legally blind and has no peripheral vision) glare at him because Milo would be too close to him/her or Milo would turn in the direction where the other person might be going.

It is tougher to navigate across the park at night with his cane so Milo is usually with me or my husband and we would talk him through of what is coming up and telling him the fun things around us. If my husband is with Milo, then I would be pushing Owen in the stroller and have Matilda with me. It also gets tough with Matilda too since with with the crowd and being outdoor, it is hard for her to hear us (Matilda is hearing impaired). She gets distracted with all the visual appeal and she is not always holding my hand and we have to make sure she is close by otherwise it is difficult for her to hear us calling her. We make it work and we have this unsaid plan of what and where each person should be. But as the kids get older and want more independence, I worry about what they will do when they are out with their peers.

With each trip (we tend to go at least once a year), Milo is finally starting to enjoy Disneyland since he is finally getting used to what to expect in each ride and being less anxious since he knows what to expect. When we do visit, we try our best to go during low season (mid January) but it is getting harder to take time off from school since the kids are getting older. With the new Star Wars land opened, it’s probably much harder to find an off season.

Away Camp, checked.

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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.)

STROLLER STROLLER ON THE ROAD WHO SHALL I CHOOSE NOW.

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I have been using my Bugaboo Cameleon since my first kid and I love it. But recently I have been hoping and wanting to switch to a new stroller. It seems crazee to switch now since this is our last baby but with 3 children, life is a bit different with the Bugaboo Cameleon. I am always on the go with the baby from dropping/picking up the kids at school to after school activities and then running errands in between. Milo gets playdate and sometimes we give his friends ride and with the Bugaboo Cameleon, we cannot very easily use our third row in our car. In all my years of using the Bugaboo Cameleon, I always detach the basket and the stroller seat when putting it away because I do not like the wheels touching the fabric of the basket and the stroller. It was never a space problem with just 2 kids but now with 3, it actually gets kind of annoying and more work since I have to arrange my stroller, groceries and all different theme bags (diaper bags, change of clothing for different activities). This becomes more of a problem when we go on road trip between all our luggage and the stroller.

The wheelboard was nice and helpful but one thing that I never got used to was the position since I am always awkwardly pushing it while one kid is on it. Now with 3, it makes it harder to navigate so we don’t really use it. I keep the kids close to me when I am pushing the stroller and Milo is starting to use his cane so I try to get him closer but enough so his cane is not constantly hitting the stroller. With Matilda, I try to get her to hold my hand or hold onto the stroller because she has a harder time to hear me when we are out.

Bugaboo has been great to our family and we especially love our smooth and easy it is to navigate, I can seriously push it with couple fingers if I have to. But with my life right now, I would love to explore another option and try to let go of my beloved Bugaboo Cameleon.

 

What I am looking for right now in a stroller:

  • easy to drive
  • space saving in my trunk
  • no need to fill air in the tires
  • option to have the child face me or out

So far, I found a few I would love to try out.

1) Orbit. There are a few things that I am drawn to about the Orbit. I like how small it folds into when you put it away and how the stroller seat would not touch the wheels. The location of the wheelboard seems to be much better. There are more storage space than the Bugaboo. I do love the fact that you can rotate the seat all around. I never have used it so I am not sure if what it says on site is what I am thinking.

2) Bugaboo Bee. I have seen the Bee around a lot in my community and I would love to try it since the size seems to be just right but I do not know how compact it folds when I have to put it away. 

 

3) UPPAbaby Cruz stroller. I do not know anything about UPPAbaby but I have seen so many of the Vista around and when I was saw that they have a compact version I got curious. It seems to fold into a pretty nice compact size and the storage is plenty for the size. I am also liking the variety of colors you can choose from. 

 

4) Nuna Mixx. I absolutely know nothing about Nuna but it seems super simple to fold/unfold and compact. Nothing fancy and functional and kind of cute. I would love to try them out and see what this brand is about to get the words on the street.

 

Please feel free to share! I am always on the lookout for new products for families of 3 and also for families of special needs children. Thank you and I wish I can try them all out and then tell you which one is the best for me.

 

 

THAT MOUSE SURELY LIVES IN THE HAPPIEST PLACE.

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1.2.3.
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We took the kids to Disneyland in mid January for 3 nights and 4 days and it was a blast. Our feet were horribly painful everyday but it was so worth it. We specifically picked this time to go we wanted to avoid a crowd. 
For those of you with kids that has special needs/disabilities, I highly recommended you going to the guest service (Disneyland City Hall) before you start your day to ask for special pass depending on the needs of your child. We went and talked with them and got a pass for Milo to have front row seats due to his vision impairment. The only ride we used for that was Star Tours. And they also gave us a wheelchair access pass since lots of the lines are contained in a dark and narrow line and that was super helpful since Milo wanted to wait in line and do everything himself and having the wheelchair access, he was able to do all that without any obstacles. *of course, in some cases, we didn’t have to wait as long on certain rides.* 
We rented strollers for both our kids and that was very helpful but it’s not so great when you cannot take it out to the on site hotel we stayed at (we were at the Disneyland Hotel). It’s a pretty long walk especially when you have to go back to the stroller rental to return them and then walked all the way back to the hotel when on occasion we could have taken the monorail back to our hotel. You would think they would have something where if you stay on site, you can take the stroller with you as an extra benefit. (We did not bring our double stroller because it would take up all our trunk space.)
Here are some tips we found on taking your kids to Disneyland:
1. Hotels. If you stay on site, stay at the Disneyland Grand California Hotel because that is the closet one to the main entry and also there’s a direct access into California Adventures. If you go during a busy season, it’s worth asking to stay on the first floor so you don’t have to wait for the elevators. When we were at the Disneyland Hotel, the elevators were insanely slow and we had to wait for a long time. And if you need accessible rooms, make sure you make that request.
2. Eating. All the food within the park is pretty much the same. Our kids are pretty picky so as long as we find french fries and grilled cheese they are fine. We packed lots and lots of snacks for the kids so they can snack all day long. We went to Goofy’s Kitchen twice and even though it is a bit on the priceier side, we thought that was a great choice compare to the places in the park. The kids like having the characters walking around. You get to sit down in a nice air condition place and the kids picked their food from the buffet. We wanted to try the Chip n’ Dale breakfast at the Disneyland Grand California Hotel, but did not get a chance but we heard the food is way better. *The food at Goofy’s Kitchen was not great, sorry Goofy! But we knew we were not there to eat yummy-let’s make a great impression-on-us food (since we were really paying to have the characters walking around us), but we thought for the price we were paying, it would be better.* Again, I have heard that Disneyland Grand California Hotel’s restaurants are super yummy. 
3. Strollers. If you can bring your own strollers, I would highly recommend it. We couldn’t fit ours because we have the double jogging stroller and since we are driving our trunk space is limited. But if you have have more than one child and you are driving, I suggest taking one stroller at least and renting another one at the park. We will be taking our Bugaboo stroller with a skateboard attachment so at least we can stroller both kids back to the hotel after dropping off the rental stroller at the park.
4. Sunblock. It was super warm in the last 2 days we were there and my advice, pack a sunblock in your day bag so you can apply it on your child throughout the day. 
5. Addictive. We did not even consider the annual pass because we did not think we would be back for at least another year or so. But after you see how happy your kids are, the chances of you going back within the year is high, so, an annual pass is a much better deal. We wished we did that because we are heading back this May for Milo’s birthday. We gave him a choice of having a birthday party with his school friends (which he has been asking us for for a long time) or going to Disneyland. He picked Disneyland. Oh! How I wish we got the annual pass. 
I think that is all for now. I hope this helps for those who are planning a trip to the happiest place on planet Earth.