Dear Taylor et al,
I just wanted to let you know what a wonderful weekend Darus had!
First of all, on Friday, we left the house earlier than expected, so we had time to stop and get donuts. As you recall, when we did this in December 2017, it was a rough experience. We tried again in February-ish of this year and it was OK (Darus got out of the car with me and walked inside, but then got scared and wanted to leave - so we did. Mission was not accomplished). ... So, this past Friday, we we decided to try again. I prompted Darus verbally, numerous times, and told him what we were doing. Upon parking the car, he joyfully got out with me and walked into Dunkin Donuts. It was busy inside, and Darus was a little anxious, but he stayed close to me and NEVER dropped. Nor did he try to reach out to grab anyone's beverage/food. We waited in line for at least 5 minutes until it was our turn. We ordered. We paid. Darus remained being patient - and AWESOME! I was so proud of him. All along the way I was verbally praising him for being such a good boy. We got our donuts and walked back out to the car. Darus opened his own car door and climbed into his seat! We went to school and Darus continued on to have a good day!
Saturday rolls around. The last time Darus had a swim lesson was in November-ish 2017. It was a failure. He didn't want to get out of the car. He didn't want to go to the pool. He wouldn't go in the locker room. It was awful and heartbreaking. He cried the entire time. A few weeks ago, while out on a walk, in his stroller, we walked through the YMCA and went back by the pool. He didn't get out, but I just wanted to see his reaction. He seemed fine. So, I felt ready to try again. So, on Saturday afternoon, I asked him if he wanted to go swimming. I then told him we were going to go swimming. We changed into swim clothes and headed to the YMCA. Of course, I kept repeating and telling him what we were doing. Once there, he walked - PERFECTLY - with me into the YMCA, locker room, shower, pool. He had so much fun bobbing around in the pool and really seemed to enjoy himself. At one time, he picked up a foam toy and I was QUICK to say, "No" (I knew he was going to put it in his mouth) - and he put it down right away!! After about 25 minutes he kept going towards the stairs to get out of the pool. I finally obliged him. We got out, went to the locker room, I dried him off and dressed him. He waited - as patiently as he could - for me to put my clothes back on (on top of my wet suit :-)) and we walked out together. Again -- all without dropping!! YAY!!!
Later in the day, I asked if he wanted to go for a walk down by the beach. Mind you - he used to love the beach, but started showing an aversion to it a little more than a year ago. (I think the large / open / windy space was a little scary for him.) He seemed interested, though, so I went with it. He voluntarily went to the "sock & shoe chair" and 'helped' me put on his socks and shoes. We got in the car. I told him we would stop at Starbucks and get a frapuccino if he wanted. (He's rarely had sweet stuff, and this was his first ever frapuccino -- it's fun to indulge every now and then!) We pulled in the parking lot and I pointed to the SBUX. He's familiar with it, as we walk to it often (him in his stroller). I place the order on on my phone and tell him we'll go in and pick it up. I opened his door, he climbed out, held my hand and walked into SBUX w/ me nicely. While we were waiting, he attempted to swipe another drink from a patron, but I caught him and he backed off right away. We got our drink, went out to the car. Needless to say, he loved it!
We got down to the beach. Parked the car. Got out and I let him lead the way. We walked from the baseball field down to the Marina and then out onto the bike path. He walked very nicely (last time I tried this, he dropped on the path and I had to cut it short, because that's dangerous). As we neared towards the lifeguard stand, I asked if he wanted to go out on the beach. He was a little hesitant but walked about 5 steps towards the ocean, and then dropped (fair enough). He took off his shoe by himself and then his sock, with my prompting. I think he liked the feeling of the sand in his feet. We sat there for about 10 minutes. Eventually he handed me one of his shoes. I asked if that meant he wanted to go and then just helped him dust the sand off his feet, put his socks & shoes back on and we continued on the path. I told him how proud I was of him and that we'd be walking back towards the car. He continued to do an AWESOME job. Didn't drop a single time. (the only time he dropped was in the sand, which was fine & not dangerous).
We then were getting gas and I saw a little pizza shop that I had been wanting to try. I placed the order on my phone. Again, I told him what we were doing. I parked the car and again, he walked like a little angel with me into the pizza shop. I asked how long it would be and she said, "about five minutes" ... I was almost going to cancel the order. I didn't have Darus' ipad, and I felt like I was already stretching him thin by how good he was doing, but he sat down on one of the chairs and I figured I'd go with it. Well -- it took TWENTY minutes for the mini-pizza and Darus was so awesome and so patient. I bought a bottle of water and we practiced him drinking from it and putting it down on the table. He did such a good job! Again, I was so proud of him.
Sorry for the long email - but I just really wanted to share all of these happy/proud moments with you, his team!
While I understand there will likely be setbacks along the way, I truly feel like he's turned a corner these past few weeks. His dropping has decreased, which is just the best! I am so thankful! He's also been more willing, it seems, to try out new things (or retry things he once used to appreciate).
I've been trying to connect the dots -- as to what we might be doing differently, but cannot really come up with anything ... other than, consistency seems to be key and to #nevergiveup
Thank you all, so much, for all of your help along the way!
Today Darus tried to ride his very first bicycle. He struggled a little bit, I think, because he's used to his car, which is more like a recumbent bicycle. It's definitely a different motor skill for him to adapt to, but I'm sure we will be riding in no time!
We had a busy morning running errands and going for a nice walk (Darus did great!)
We got home and I turned on a cartoon for Darus and we were both laying on the couch. He got up and went into the kitchen. I figured he was probably looking for a snack, but I was being lazy (and now being honest!) and didn’t get up to help him. Instead, he brought his talker to me and navigated —- all by himself (!) —— Food Snacks Pretzel !!! I was so proud of him. Of course, I got him his pretzels right away and he was so damn happy! It was awesome! I also changed the Talker to read pretzels (plural); since nobody eats just one pretzel!
Darus has been taking Lamictal since September 2016. He had a bad reaction to the generic form of the drug and since then, he's had to have the brand name. Surmounting this task on a monthly basis, is something I loathe about being a special needs mom. The amount of time/money/energy that I put into getting my kid the medication he needs is astounding. The retail price for a one month's supply is $2,689.99. Thankfully, we have insurance and MediCal, but it is still very troublesome.
We need single-payer healthcare here in the US.
Darus is quite inquisitive. He loves to look at any screen he can find!
First time in a LONG time that Darus fell asleep during the day, on the couch. It. Was. Great!
Because you're never too young to stand up for what is right! We all went down to DTLA for another historic Women's March. We didn't get to do too much marching, given there were 500,000+ people crammed into a small area, but our voices were heard!
2018 Impact Statement
At Women’s March LA Foundation, we recognize that there is no true peace, freedom, or inclusion without equity for all. Our event on January 20, 2018 featured music, art, community booths, and speakers in a shared voice of resistance with advocacy aligned with the national Women’s March Unity Principles: ending violence, protection of reproductive rights, LGBTQIA rights, workers’ rights, civil rights, disability rights, immigrant rights, Indigenous people’s rights and environmental justice. We look forward to engaging our community even further.
The 2018 event provided participants the tools to amplify their motivation and to use their vote as their voice to build government that reflects their ideals. We created a safe and peaceful space where the important issues of voter turnout, access, restrictions, and intimidation could be addressed leading up to November 6, 2018 and beyond.
Our votes matter.
Our presence matters.
We vote for ourselves and for those who cannot.
Our LA event is part of the Women’s March California Coalition and one of many events across our state. We have key elections here in California on November 6, 2018 and the time is now to prepare!
We believe that together we can create transformative social change. Our experience from the Women’s March 2017 shows that together we have impact beyond our wildest expectations. We will use the power of the Women’s March to bring attention to the urgency of participating in the November 6, 2018 elections and to augment and magnify the work being done by our partner community organizations to turn out the vote in 2018 and work on important voting initiatives in the future.
Darus and I went up to Josepho this morning, as we have done many times before. This morning was different though. He was upset that we had to park in a different spot from where we usually park. He had a tough time transitioning and walking to the trailhead, but finally came around.
We only got about a half mile up when he just dropped to the ground and refused to go further. I was frustrated, but I knew it wasn't going to do me any good. In hindsight, perhaps he was just tired, and he knew, the further up he climbed, he'd have to make that many steps to get back to the car.
As we were walking back to the car, I remember that the Verizon store would be opening soon. I figured the store, on a Sunday morning, wouldn't be too busy. I also knew it was a gamble, but I was willing to take it. I figured that things could go back, which would give me two reasons to complain OR he would do good, and turn the day around. Lucky for us all, he did GREAT! I was so proud and impressed with him. He kept himself busy playing on an ipad and even navigated, by himself, between his beloved garbage truck videos!