Darus is very fortunate to have such a loving, fun & patient caregiver, Luana. She takes him on all sorts of adventures! Today they went to Universal Studios in Hollywood!
On our way to school yesterday, time was our side, so I decided to stop for donuts for Darus’ teachers. I suffered a major special needs’ #momfail by not telling Darus what we were doing (verbally telling him, multiple times, if there’s a change in our routine can sometime help him with the transition). I parked the car and got him out.
Almost immediately his face turned to panic mode (“this isn’t school” - is what he would have said, if he could talk) and he dropped his 75 pound body to the ground in the parking lot. Fuck.
I chose to not abort the mission but instead had to nearly drag him into the donut shop. (His teacher thinks - and I agree - he shouldn’t be so rigid and needs to learn to be ok with change.) We stood - ok I was actually kneeling next to him - in line waiting for our turn. Darus was crying and visibly upset. I kept telling him, “we’re here to buy donuts for your teachers”, “everything is ok”, “we’ll go to school right after this”.
I wanted to cry and scream simultaneously. At that moment, a person standing in line (😇) cautiously approached us and kindly asked if she could place the order for us and bring it out to our car. I was so thankful! As much as I was trying to teach Darus flexibility and patience, I think the lesson was going south quick. I handed her some cash and asked her to get a dozen assorted donuts.
I then took Darus outside and struggled to get him back in the car. He was, once again, confused by this change to his routine. I finally got him back in his carseat and the gal came out with our donuts AND my cash. She paid for our donuts. She said, “these donuts are on me, thank his teachers from me”. Tears burst into my eyes. The kindness of strangers! 💜💚 I was so surprised by her gesture I didn’t think to ask for her name nor did I share any information about Darus’ condition and why it was such a struggle for him. I’m sharing the story here in hopes that it inspires others to #bekind #strongertogether #phelanmcdermidsyndrome#nonverbal #autism #ilovela #happychanukah#nomoore
(picture of Darus, happily on his way to school)
- October 2015 - Darus' neurologist wanted him to have a PT evaluation and PT - Jonas took him for the evaluation at Therapy West. The evaluation was completed and the evaluator suggested OT, in lieu of PT, as Darus was unable to follow her instructions, and she felt until he had a greater ability to attend, he would have greater benefit from OT
- October 2016 - Darus' neurologist again suggested he have PT. She wrote an Rx and said don't bother w/ the evaluation, just get him in PT. She said NAPA is the best and since it's so close to our home, it seemed like a good fit. We are STILL on their wait list :-(
- September 12, 2017 - I brought Darus to a well-regarded private physical therapist. Overall the therapist's greatest concern seemed to be his posture. Her primary recommendation was that he see a pediatric orthopedist to have his gait and spine evaluated. She also recommended we might want to get him into wearing a TheraTog under his clothes a few hours per day.
I received her report today and one of her observations regarding his ability to run, "He is not using a reciprocal arm swing when running." .... I have a photo that shows otherwise.
In her defense, the evaluation took place at her office, which had limited space -- additionally, she prefaced the report by stating that Darus was tired and not cooperating well w/ the evaluation - both true statements.
It is unfortunate that evaluations cannot be done in more natural environments; as I do believe children like mine would have more accurate results if they could.
In addition to always wanting to see what's on his iPad and what's on your iPhone, Darus has really gotten into looking at all of his books! It's wonderful to see him paging through his books and he is happy to interact with you doing the same. It's very sweet!
I shudder to document this .. as I'm hopeful it is a passing phase ... but I want to try to keep as good of records as possible in order to help Darus and all others affected by PMS.
Every now and then I will hear Darus in the middle of the night either laughing or 'talking' to himself. In the past, I've always checked in on him via the Nest camera in his room. As soon as I'd see that he was still in bed, I'd typically turn the camera off, as even the little light that it puts off, I figure must be enough to keep him awake, as in the past, as soon as I've turned it off, he seems to go to sleep.
Last night was different. I woke up around 3 AM, as I heard him giggling and bumping into the wall. I checked the camera and could see he was fine, in his bed, so I was about to turn it off, when I noticed there was quite a history - going all the way back to 12:30! The poor child had been awake, hanging out in his bed, and a few times got up to look out his bedroom window. My heart sank. I had to wonder how many other nights this has happened?
I finally went in at 3:30 AM. His diaper was overflowing and his pajamas were wet. We went to the bathroom to change. I put him back in his room, and he went back to sleep shortly thereafter (around 3:45 AM).
Darus was, "Fired up and Ready to Go!", on his first day of first grade! Darus is very fortunate to be going back to the same school, having the same teacher, being taught in the same classroom!
Just finished year two of our participation in the PMS natural history study at Stanford. Darus was a trooper, and although he was grouchy at times, he pulled through. The study isn't easy - but it's essential for research and future drug therapies/cures.
In my opinion, the best part of our adventure came at the very end and, unfortunately, cannot be measured by a standardized test.
As we were waiting for our flight, we stopped at a restaurant. My mom and I played cards while Darus watched his iPad. We treated Darus (and ourselves) to some French fries. When the fries arrived - they were hot. He kept trying to reach over the table to grab at them. I pulled out his talker (AAC device - a mini iPad with proloquo2go) and quickly photo'd the fries and added the icon to his talker. He then -- without me even prompting him -- "asked" for fries by touching the "French fries" icon -- all the while discriminating the French fry icon from the other icons present on the page. My mom and I could not have been more proud of him! (I've witnessed him doing this before, but it was my first time programming and initiating it.)
So long Stanford! See you in July for our inaugural PMSF Stanford Symposium!
Something that Darus has been working on for years is joint attention. He first started with a tricycle. Once he outgrew that, we got him a larger one. His most recent go-go machine is his pedal go-kart. He can really smoke it up and down our cul-de-sac, and it's fun to watch! He pumps his little (big!) legs, steers, and keeps his eyes on the road! When we leave the cul-de-sac, he's good about staying on the sidewalk and pretty good at following our directions!
There's a first time for everything, right? Earlier this year it was brought to my attention that there was an open spot on the PMSF BoD. I contacted the president to inquire. Much to my surprise, I was invited to apply for the position. I did, and I was accepted!
I recently returned from a trip to Florida, where I attended my very first, of hopefully many, BoD meetings. I had the pleasure of seeing some familiar faces and also meeting new ones! In addition to BoD members, there were also committee chairs and others that are heavily involved in the Foundation. It was a wonderful meeting and I am humbled beyond belief by my new position.
I really cannot imagine being more passionate about anything in my life. The Foundation's mission and values are aligned with mine. I am prepared to accept my new role and eager to do all I can to help all that are affected by Phelan McDermid Syndrome.