NAVIGATING THE WATERS OF PHELAN MCDERMID SYNDROME
A Regional Center is a nonprofit private corporation that contracts with the Department of Developmental Services to provide services and support to individuals with developmental disabilities. California has 21 Regional Centers. Darus is a client of our local one.
I am deeply saddened by this senseless tragedy and my heart goes out to all that have been affected.
Please consider doing an act of kindness today in memory of those that lost their lives.
The mornings can be a challenge when it's just Darus and me at home, but we always manage! Thankfully, he's mostly past the stage where he'll take all of his clothes off when I'm in the shower. Now he's graduated to other mischief! This morning, for example, he helped himself to the mustard from the fridge. I was able to find hilarity in this episode, as thankfully, it wasn't nearly as messy as it could have been! As I was getting dressed, he toddled into my room and I noticed he smelled a bit like a hotdog - but I didn't see any mustard on his face/clothes. I walked out to the kitchen and noticed mustard splatterings on the table, but didn't see the actual mustard bottle. I figured it was likely in the garbage, as he often puts things in the garbage. Nope. Not there! I then noticed that there was a bit of mustard on the fridge door, so I opened the door, and there was the bottle! Cleverly tucked back into the door of the fridge!
Like many kids his age, Bryce Goldblatt would spend all day at the playground if he could. There’s a small one near his townhouse in Gaithersburg, with just a slide and a rock climbing wall, and if his parents let him, he would run and play there until he was too tired to move. If he falls, he gets up and keeps going—he could get hurt and he wouldn’t even notice. When it’s time to go home, he often pulls on his mother’s hand, trying to get her to turn back.
Bryce, 6, also loves the beach and the pool. And pancakes, peekaboo and his little truck book. The more bubbles in his bath, the better. Everyone who knows him talks about his smile. He likes waterslides, unhooking the straps on his car seat, shopping at Wegmans and chasing his 9-year-old brother, Bennett. If somebody hides the TV remote, he’ll find it. In preschool, he used to give his Goldfish pretzels to a classmate and then take that little boy’s egg rolls.
But Bryce won’t sit down and play with a toy or draw a picture. He doesn’t get excited for his birthday or Halloween. He watches three shows—Mickey Mouse Clubhouse, Bubble Guppies and The Fresh Beat Band—but only the same episode of each, over and over again. He has to be buckled into his chair for meals, and has trouble using a fork or spoon.
Read moreWe are anxiously awaiting a call from Stanford to join a study that might help us to understand Darus better and will hopefully lead to some better treatments & therapies!
The Developmental Synaptopathies Consortium is composed of a group of 10 medical centers studying 3 rare genetic syndromes that often cause autism spectrum disorder and intellectual disability.
A touching little video for all teachers of special needs kiddos. Remember, we are all teachers.
Thank you @brainhighways for putting this together!
Last month I wrote about the sadness I felt in having Darus' annual IEP meeting. I read this article today on The Mighty and was so touched by it. Von's a lucky guy to have parents that are so in tune with his needs. At this point in time, we are very fortunate to have an extraordinarily incredible NPS (non-public school) for Darus to attend, but I'm not sure that will always be the case.
@UnitedAirlines thank you for making our trip as easy as possible by placing us in the bulkhead row on our return flight from Chicago.
As any parent would - I love hearing my child laugh. Thankfully, he's quite joyful and it happens often. #phelanlucky
Video below was taken by Darus' Auntie J, after a full day of school & travel (LAX - ORD). The child had his second wind, apparently. He's so happy.
We went to Venice Beach today and Darus had a great time! He loves it when we dig him holes in the sand. He proudly refers to them as 'swimming pools'! Daddy dug this hole for him today - with Darus' 'help', of course!
Once a year, we have an IEP meeting. There are other conferences and meetings throughout the year, but once a year it's an all hands on deck meeting with the teachers, therapists, administrators and the school district. Thankfully, thus far, everything has gone smoothly. We've yet to hire an attorney, because we've been given everything we've requested. That's the good news. The not so good news is that it was emotionally draining and exhausting. It's a time for reflection and it's another reminder of how very different my child is. It's a reminder of how very different my life is. I feel ungrateful to go into more detail here, but needed to share. It was a tough day.