First let me apologize for not posting since November as clearly the Holidays got the best of me, my time and my brain. I am back and ready to rock 2016 on SO many levels some of which I will not be able to share with you until the next few weeks, but rest assure, this Warrior Mom is going to change the world. Yes I said WORLD….or at least go down trying!
I hope all of you had a wonderful holiday season. WK and I are wishing you all a very very very Happy New Year. Yes I am a bit late on the well wishes but bare with me when I explain what has been going on over here.
Before I get into the topic of “Hiring An Autistic Person” I would like to give you a brief update on WK and his health challenges. It’s so funny because for the most part, I am good with the Autism and the BS that comes with it at this point. I mean heck, I have been dealing with it now for now almost 10 years, however like I have said in the past few posts, it’s the health issues that are plaguing me at this point.
WK is not growing, unfortunately. I mean as in height wise, shoe size, weight wise, everything wise. It really sucks and I am really upset. It is 100% due to the steroids we had to give him in his IV when he was having the monthly IVIG infusions. As a reminder he now has weekly SCIG (Sub Q) infusions every Sunday morning from 730am-1030am versus monthly IV infusions that lasted 6-7 hours. WK hasn’t grown in 2 years. It sucks. It REALLY REALLY sucks. He was always at 90%+ in his growth and weight but unfortunately the steroids have stunted his growth and his blood tests show that he is basically producing 0% of what he needs to be producing in order to grow. So off we are to CHOC (Children’s Hospital of Orange County) in April to figure out what to do. TRUST me, I already know what is coming and that will be DAILY growth hormone shots. Yea…….I am open to ANY tips on how to break this news to WK because although he is a SUPER DUPER STUD when it comes to his monthly blood draws and B12 injections every 3 days, I don’t think he is going to take the daily shots very well. Blech!
Separately from the growth issues, his Private Therapy Team believes (as do I) that he has an Auditory Processing Disorder (ASD) separate of his Autism diagnosis. This basically means that what he hears and how he processes it or lack of processing it are completely messed up. With that said, we have an evaluation in April to determine if he actually has it or not and if he does how we go about trying to help him. Trust me, there is NOTHING in my body that says he doesn’t have it so basically I am just ready to hear what we need to do to help him. I guess this is how Warrior Mom’s live these days??? I am not sad. I am not nervous. Yea sure I am a little pissed off, but I am ALL about getting the party started and moving quickly on how to help him.
Alright-so there you have the “health” updates and the BS (as I like to refer to it as) that we have been dealing with the past few months. On the Autism side of things we are in a good place, coasting and managing the day to day without too many problems. Let me say that in the past I would have found every tiny negative thing to point out, but honestly I am really proud of WK in doing good in school, social skills, sports, music school, and everything for the most part everything else. Autism is NEVER going to define his abilities…which leads me to the “real” topic of this post: Hiring An Autistic Person.
Prior to the Holidays I received a private message on Facebook from someone I have known for 17 years. She is the Wife of my Husband’s Fraternity Brother and someone who has always been nothing but nice and genuine to me. She didn’t have to reach out to me but she did and below is the message I received from her.
I just wanted to reach out to let you know how awesome you are with everything you are doing. I’m not on FB often but I often read your posts and have been reading your blog.
I wanted you to know because of you, I changed my whole perspective on things and have taught my children to do the same. Instead of sweating the small stuff with my kids, we celebrate the fact that they have been brought into our lives.
Also because of you and bringing awareness, I hired an autistic employee-John, about two years ago. In the beginning, we didn’t know how to train him so I went as far as hiring a special needs teacher to train him and us (the other 50 employees) on how to help John. He is doing awesome and his mom and dad come in often to thank us for giving him the opportunity.
I commend you and admire how hard you work as a parent. I hope this means something to you and know that your voice not only reached me but also the 50 other people John works with.
So first let me publicly say to “B” that YOU my FRIEND are simply AMAZING. THANK YOU THANK YOU THANK YOU for taking a chance on hiring John. Thank you for understanding that yet he is different, he deserved a chance. Thank you for being so amazing and knowledgeable enough to know that the best way to have him succeed was to hire a Coach to help his Co Workers. THANK YOU. Truly.
Today on my “private” Facebook page a Friend of mine shared a video of an Autistic Barista at Starbucks dancing while making coffee. I smiled so big and then I cried. I didn’t cry in sadness. I cried because it was beyond amazing to see a major Corporation like Starbucks take a chance by hiring someone with a disability like Autism. You may love or hate Starbucks and quite frankly I really do not care, however I do care about the fact that someone captured this super happy Autistic guy making coffee, dancing and just stoked on life. Below is the video that I am referring to:
Apparently his name is “Sam.” So Dear Sam: YOU ROCK! YOU ARE A STUD! KEEP DANCING AND YOU CAN MAKE MY COFFEE ANY DAY BUDDY!
There is a HUGE HUGE concern for Parents like me who have children similar to WK’s age because there are not a lot of job opportunities or adult programs to help Autistic people who are 18+ in age. Given the recent stats on the percentage of children being diagnosed with Autism, it’s beyond alarming that we as a Country do not offer better opportunities for those with disabilities, not even just Autism, just disabled in general.
I’ll stop here because the subject of “What Happens When They Grow Up” is something that I am truly scared of and need to write about in a completely separate blog post. I would like to however say that Grocery Store Chains like Trader Joe’s which is the Company that hired John, gets MAJOR MAJOR MAJOR props for being BRAVE, being BOLD and being AMAZING. THANKS TRADER JOES! Thanks to my Friend “B” for taking the chance on hiring John and thanks to his 50+ Co-Workers who treat him with dignity.
Until next time friends, please know how much I appreciate your love and support. My “project” will be more successful if people like you continue to comment and share my Blog with your own Friends. I can assure you with my entire being for this past year (besides caring for WK) I have been spending on brining my “project” to life. Stay tuned! I am JUST getting started.
ps-here are a few photos from the holidays