April is Autism Awareness Month and it’s something that is very close to my heart. I hope that after reading this, you’ll have more compassion for parents of and children with autism and how you can be of help.
I was invited by my friends at Comcast last week for an evening to learn how technology is helping families with children with autism. The event was coordinated with Autism Awareness Month so I thought this was a perfect opportunity to share my thoughts as well as what I learned. This post is written in collaboration with Comcast.
I did not have much first hand experience with autism until about 5 years ago. Within my extended family, we have 3 children on the spectrum and currently 1 in 68 children are diagnosed with autism. I’m struggling to write this post out of privacy and respect but also wanting to raise awareness.
For me, autism awareness month is about two major actions; Raising awareness for the children who have it so you know how to be inclusive and nonjudgemental as well as for the struggles that the parents go through and how you can be a better sister, friend, educator or partner.
The most important is to know how differently autism manifests in each child. It’s a spectrum disorder because they really are all unique cases. For many diagnosed children, professionals have no idea what the future holds and this can be extremely hard on the parents.
My niece Cameron is on the spectrum and I’ve actually never mentioned it on my blog out of privacy for my sister but she gave me to go ahead for this post. Many people are shocked when they learn she has been diagnosed as having autism. She’s the one all smiles below and in all her glory. She LOVES egg hunts so Easter was her jam.
“She’s so friendly. She doesn’t look like she has autism,” people say to my sister. Cam however meets all the requirement for an autism diagnosis which is really hard to do and allows her to be given the special resources she needs at school.
Technically, she has a chromosomal micro-deletion that is one in a million. Her main challenge is verbal communication. With many cases of autism, people have no idea what is wrong or what causes the symptoms. With Cam, even though we know what it is, we don’t know how it’s going to manifest as she gets older, even the other 250 children with the same diagnosis have varying degrees of communication. Every single child on the spectrum is different. It is a very large spectrum that most people don’t quite comprehend unless they are a first hand parent.
If you see a child having a meltdown in a store, it could be sensory overload for them and they just need to chill out in a quite place for a few minutes. What good does it do for anyone to stare down the parent or child acting out? Children with autism will have different reactions to feeling overwhelmed.
Do you have any idea how hard it was for that parent to even make the decision to bring their child into the store? Even just a smile to the parent, lets them know that you support them and puts them at ease. They are trying to live as normal a life as possible. Just smile and let them know, they are doing a great job.
Which brings me to my next point…
Parents. The parents are often left out of the autism awareness message.
Parents are left to feel guilt and it can be incredibly hard on them. If you know a parent of a child with autism, ask them what you can do to help. Chances are they will say nothing but at least offer! Be inclusive. Invite them to things even if you think they are going to say no! When you stop inviting them, that’s when they start to feel left out.
I’d tell you what it’s like first hand, but I can’t. I can tell you how hard it is to watch someone you love go through the emotions of being a parent whose child has autism. If you want a little glimpse into what it feels like to be a parent of a child with autism, watch this video from the mom behind, Finding Cooper’s Voice. It made me cry because of how real this woman was able to articulate her feelings and I quickly realized, this is what my sister deals with emotionally. I knew it without even talking to her.
Parents are going through uncharted territory and they don’t even know what’s next or how to raise this child with special needs at first. Imagine what it might be like to think that your child at age 3 is going to live with you for the rest of their lives and wonder who will look after them once you are gone.
At the Comcast event, we met a woman named Anne whose son Jake is 26 years old and has autism. She never knew if he would be able to have a job or live on his own but she shared with us that there is hope for kids with autism. Her son now works 32 hours a week and has his driver’s license. She now lets him stay overnight by himself and she is able to watch him on Xfinity Home Security to check on him and make sure all is well. It gives Jake freedom and I’m sure Anne enjoys a night alone, too! Don’t all moms. You can watch their story below.
These cameras that Xfinity Home is able to set up help parents be able to watch their kids for safety but still giving them freedom. They also have the ability to send alerts when a door is opened or closed. Many children with autism are “runners.” These door alarms are more important than you think.
Hingham has a resource officer who knows all special needs kids in the town because of the running situation. There is a fine line between caging your child and keeping them safe when it comes to autism. Xfinity showed us how smart home technology helps enhance independence within the home and puts parents at ease.
With Xfinity Home, you have access to view your security cameras on your TV and can see live footage by simple asking your voice remote to view the camera. For small children or children with autism who love to wander, it’s extremely helpful as you can also set different sound chimes when different doors are opened.
This month for Xfinity X1 users, if you say “Autism Awareness Month” into your voice activated remove using the X1 platform, you’ll be able to access a variety of programs that feature autism awareness shows and documentaries.
My friend Jenn and I attended the lovely event together and it was so nice to catch up on the drive down and have an adult conversation without our kids running around! Jenn is amazing and if you are looking for more mommy and me classes in the city, make sure to check her out here.
Thank you to Comcast for helping raise awareness this month, inviting me and sponsoring this post.
If you have anything that you’d like to add, please feel free to share in the comments.
And remember, just smile at a parent and remember to be inclusive.
Thank you for this post. I was super wary when I saw that it was going to be a sponsored post but i was pleasantly surprised by it. Like you, my sister’s kid has autism. It’s my nephew and he’s 5.5 and non-verbal. To say it’s difficult and heart wrenching is the hugest understatement. It’s hard for me but it’s almost insurmountable for my sister sometimes. And I love Finding Coopers Voice but her posts -- and especially the commenters who share their own stories of their own children -- basically rips my heart in half. Anyway, all this to say that I enjoyed your post and thank you. Having autism in my life has changed me into a more tender hearted person and for that I’m grateful and as much as I don’t wish it on anyone, it helps to read other peoples experiences with it.
Thank you. I would have posted something anyway but when the event invite came, I was happy to attend and share the experience since I had a personal connection. Thank you for reading and taking time to comment 🙂 It’s “sponsored” in that I received a gift card to amazon as full disclosure.
Kathleen Pohl says
Sarah, I enjoy and appreciate this post. Autism has touched my life deeply, I currently work as an aide for a sweet boy with Autism. I have to be honest though, the use of “autistic children” rather than “children with autism” did bother me slightly. I’m not sure if you have heard of people first language, but it emphasizes putting the child before the diagnoses. Sorry to be the PC police, but I just wanted to make you aware of it!!
Thank you for the heads up and I’m surprised to hear this. I had my sister read this who obviously is directly impacted and she didn’t mention this so I wasn’t even aware that this was an issue. Thank you for bringing light to it and I’m happy to change!
This is one of the main reasons I am so uncomfortable putting myself out there. I’m not sensitive to much of the language whereas others are. I like to write/speak freely and hate the thought I might offend someone out of ignorance, miswordings, typos, etc. as your sister I’m so proud of what you wrote bc I so often struggle with the words
Mary you the bomb.com and your kids are both amazing. Keep doing what your doing because both of those girls are going to be stars. Love ya!
Thanks xo ????
As a Mom with two on the spectrum -- THANK YOU. Everything you wrote and your intention behind this post mean everything. Someone who lives daily with the affects of autism -- I can tell you I’m not even paying attention to things like you being sponsored or perhaps using words that some may think aren’t PC. You being who you are and caring enough to even speak about Autism and try to spread awareness through your platform means the world. You are helping more than you know and again thank you for your outlook, perspective and support.
Thank you Miriam 🙂 xoxo
Mary (Sarah’s siste) says
Respect ✊. Know one knows what it’s like except for our tribe!