Camp Josepho Hike

I've had the honor of carrying both my babies in my stomach up this very same hike.  It's a favorite of mine.  It's a fireroad through the Santa Monica Mountains.  It's known to the locals as 'Top of Capri' or 'Camp Josepho'.  Below the hiking trail is a place FKA Murphy Ranch, which has a history all of its own.  All in all, I've spent a lot of time up here and today was the first day I took Darus, all by myself, with no stroller.  He loved it!  He stayed on the trail and just kept truckin'!  I look forward to many more adventures with him up here and hiking in general.  (By the way, we did a total of 3.5 miles in just over an hour - with a fair amount of elevation!)

 

  

Apple Boy

Darus' skills seem to come and go.  Once upon a time, apples were about the only food that he didn't like.  Now, he really enjoys them!  So much so that when he sees one sitting in the fruit bowl, he'll oftentimes help himself!  

Unlocking Knowledge

A friend of mine recently shared with me information about a type of 'speech' therapy know as RPM (Rapid Prompting Method) founded by Soma Mukhopadhyay.  The same friend shared that she had a local therapist that offers a similar type service and we started working with this therapist a few weeks ago.  Darus showed us that he knows how to spell words!  He also showed us that he knows how to do math!  He's shown us this by using his finger to point at different letters/numbers!  It's really been incredible to see how much Darus knows!  We are very thankful to Soma and Tracy for making this possible!

Below, Ms. Tracy read Darus a short story about lions in the jungle.  She explained to Darus that lions eat meat.  She then asked Darus, "what do lions eat?":

Teaching Acceptance

We are fortunate to have found a lovely local public school that Darus started earlier this year.  That said, as with any community that we find ourselves new to, we are vulnerable and it's a whole new opportunity to teach acceptance.  Earlier this week, I missed the opportunity and I posted the below on our school's FB page.

This morning as I was walking my 6 year old son to his classroom, there were two boys that saw my boy from afar. One of them pointed and said, “Look, there’s Darus”, in a way that was less than friendly. They both looked away after I made eye contact with them. It was apparent to me that they were pointing at my child because he is different from them. Darus is different. He has Phelan McDermid Syndrome in addition to autism. His condition impairs his ability to speak, process information and interact with others. It does not, however, stop him from being a very happy, loving & playful boy.

I somewhat froze in the situation because I really didn’t know how to respond. On one hand, I was grateful that they didn’t mock him – but on the other hand, they had no intentions of approaching us to say hi. I do not fault the kids. They are young – I’m guessing 2nd-ish grade. I am more upset with myself that I didn’t walk over to the kids and introduce myself to them as Darus’ mom. I then could have used the moment as a teaching opportunity to prompt Darus to say hi and the kids to say hi back to him. I could have possibly kindled an understanding of acceptance for these two boys.

I hope that if any of your children talk to you about a boy named Darus at school that you let me know. We’d love to invite you over for a playdate. We’d love to help bridge the gap between neurotypical and special needs. We’d love to share our world with you and yours.

My post quickly generated many "likes" and "loves" and my phone started buzzing as well with private text messages from a handful of parents that I've met since the beginning of the school year.  I definitely felt the love.  I also felt and realized that I'm not alone with my feelings.  There are other parents, that have children, that have differences, that have also felt that their kids have been picked on - for lack of better words.  One of the parents, Heather, kindly and courageously asked for my advice/input as to how to address this with her children.  Below is my response.

Thank you all, very much for your kindness. I really appreciate it. I have given a lot of thought to Heather’s question, and then found myself on Amazon. I was able to find 5 children’s books that I believe could be helpful in better explaining acceptance. I’ve purchased them, and after reading them myself, I am happy to pass them around to any parent that is interested and perhaps ultimately donate them to the school library? I think they could be really helpful in opening the door and facilitating conversations within our school community. 

Unfortunately, I don’t believe there to be a steadfast answer to Heather’s question, I really wish there was. I believe that each parent has a different way of wanting their child identified, and I, frankly, get confused with identifying my own, much less others. I currently refer to my child as having special needs (not sure if that’s right or wrong?) – however, I think that label can be confusing for children – because they then wonder why they aren’t special (when, of course, they are!). 

That said, I am hopeful the books can help open a dialogue. I want all of our children to know they are special. We have differences and similarities – but focusing on acceptance of differences, I guess, is what I’m trying to accomplish. Again, I appreciate all of your kindness and posts here and privately. Xo


A dialogue was started.  Now, as a community, we need to keep it going.  I hope these books help nurture the process.