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What My Kid with Autism Wants You to Know About Him (Hint: It Has Nothing to Do with Autism)

8/27/2015

15 Comments

 
Picture
I'm a Mommy Blogger in the autism community and sometimes we are in the crosshairs for writing about our children with autism and autism in general, especially from those living with autism. I get it. I don't have autism. I don't know what it feels like to have autism. I don't know what it's like to be my son. However, before I put on my kevlar, jump up on my soapbox and defend my blog, apologize and delete my blog, or chastise other Mommy Bloggers, I decided to try and take the heat off (if only momentarily) by going right to the source. My source, that is, and ask my son Ryan what he wants you readers to know about him, in his words, not mine.

I approached Ryan while he was in mid-creeper kill playing Minecraft (once again putting myself in the crosshairs for interrupting something so meaningful). I told him what I wanted to do and said, "If someone were to ask you who you are, what you're all about, what would you tell them?"

Well, much to my surprise and delightment, Ryan left the creeper killing to some other online gamer, sat on the floor next to me, and I began my "interview" with a most reliable source. Ryan easily told me "who" he was and at times he even grabbed my phone out of my hands and started tapping away, frustrated with my inept and slow typing speed. I was amazed that for someone who "has an extreme fear of sharing personal information", how much he wanted you to know.

So here you have it, straight from the horse's mouth ("I'm not a horse Mom. Sometimes you're kind of dumb".). Yep, sometimes I am.

1. His name is Ryan.
2. He is 14 years old ("I typed that since I will be 14 in two days").
3. He is in 8th grade.
4. He loves Minecraft. (A lot, a whole, whole lot).
5. He loves his dog Rookie.
6. He love his family...most of the time (He struggled with whether to use the word "some" or "most". Sigh).
7. He loves Velveeta Shells and Cheese (Original only. Never, ever, ever, the gross 2% milk kind that doesn't taste "fresh").
8. He loves listening to The Pulse on XM Radio.
9. He has perfect pitch and he loves to sing in chorus (and thanks to XM Radio, in the car now too).
10. He love the singer Ed Sheeran (and he can mimic his singing fairly well. Call us Ed Sheeran, Ryan is waiting).
11. He is an excellent student who loves school ("not making the Honor Roll would be a fate worst than death". Ummm...I don't think so, but, this is his list).
12. He loves Hollister tshirts because they are so soft (and the ones that are three years old are the softest of all regardless of how they fit).
13. He hates the feel of paper ("I can feel the paper right in my spinal cord").
14. He loves Rita's root beer gelatis (and hates that they are closed from October-March).
15. He loves Auntie Anne's Cinnamon Sugar Pretzel Nuggets (and loves that they remain open all year round).
16. His favorite season is a "competition between summer and fall" (it's hard to choose between watermelon and apple cider).
17. He wants to learn to play guitar (see Ed Sheeran comments above).
18. He wants to learn more about computer coding (I fear he will one day move across country to work in Silicon Valley and forget how perfectly I make those Original Velveeta Shells and Cheese. Does Rita's stay open all year long in California?).
19. He likes his hair long, not short (and he rocks it too).
20. He is a vegetarian. Meat is "gross" (unless you count hot dogs and fish sticks as meat. He does not).
21. Sometimes severe storms make him a little "paranoid" (not nearly as paranoid as they use to though).
22. He prefers writing over talking (and is really quite good at writing).
23. He loves watching Minecraft "play-throughs" on YouTube (yeah, I don't get it either).
24. His favorite vacation spot is Disney World (even though sometimes he "hates walking through all those parks").
25. He knows when he reaches his limit, like when I asked him what he wanted number 25 to be and he said, "I think that's enough. I'm done."

That's a lot of information. I consider my source very reliable and AWEnest and I was amazed at how long Ryan sat still for the "interview". I think he really wanted you to know exactly who he is and exactly how he sees himself. As you can see in Ryan's list of 25, well, ok, technically 24, things he wants you to know about him, The A Word did not make the list. The A Word was never considered and never mentioned...until I brought it up. "Would you want someone to know that along with being an excellent student, a beautiful singer and a great gamer, that you also have autism?". With a sincere and confident look on his face, he said, "No, I probably wouldn't tell them that because that's not who I am. Wasn't I suppose to tell them about who I am?". Yes, yes, you were my AWEsome boy.

There has been a debate recently when discussing someone who has been diagnosed with an autism spectrum disorder as to whether they should be described as "a person with autism" or an "autistic person". According to Ryan, when it comes to describing him neither label is necessary because autism is not who he is. He is a son, a brother, a dog lover, a singer, a gamer, an Ed Sheeran fan, a future coder, and a vegetarian (sort of). Autism is not who or what he is, something all of us Mommy Bloggers, parents, autism advocates, doctors, therapists, teachers and pretty much everyone in the whole wide world should take note of.

As he got up and returned to his creeper killing, Ryan assured me, "this discussion is over" (see #25). It certainly is my boy, it certainly is. 

Picture
See #5.
15 Comments
Sue (Violanti) Bunch
8/27/2015 11:49:52 am

Love your comments Ryan!! And I am also a dog lover and a vegetarian!!

Reply
Penny
8/27/2015 09:14:00 pm

Great blog and please never take it off or leave Facebook. As a grama of another awesome boy you have helped me so very very much! Hugs!

Reply
Melinda
9/1/2015 01:58:02 am

I really enjoyed reading this post. Tell Ryan he is a rock star! As parents of young children with ASD, (especially those who are mostly non-verbal) we often try to imagine what they will be like when they reach their teens. We are so thankful for our now 5-year-old son and how he has opened our eyes to autism. Each day is a new adventure for our family, anticipating new breakthroughs and what our son will teach us.

Reply
Juanita walsh
12/7/2015 08:10:05 pm

My sons name is Devin and he is 13. You could not have described him any better except honor roll but everything else from the friend to the Pringles to being a vegetarian. Everything you wrote or Ryan wrote was just like my son.

Reply
John Bennett
2/7/2016 08:46:28 am

Kathy, your article entitled How "Not right now, but later" so epitomizes my current experience with my ten year high functioning son. So many overlapes in your experience to ours. I have always said that I want him to be happy vs _________ (whatever parents normally ascribe to success). Thank you for sharing. You know have a new blog follower.

Reply
Beatriz
6/22/2016 07:58:06 pm

Ryan, my son Javier and you have so many similarities! Love for music, perfect pitch, never consider less than A's at school, 14,, love his pets , gamer, long hair, and so much more! Thank you for sharing!

Reply
RandyB
9/14/2016 07:44:56 am

Great blog. I thought you were writing about my 13 year old Matt

Reply
Carlos link
3/14/2017 09:44:26 pm

Thanks for sharing your sons story with us.

Reply
Carol
5/11/2017 05:11:05 pm

Ryan is AWEsome! My son Cody is very similar. Minecraft is an everday ritual, Shells and cheese are a staple of life, music is too. He also wants to learn guitar. So glad you shared with us! What a blessing our children are!

Reply
Saman
9/3/2017 09:49:51 am

You blog is Awesome. I enjoyed all the details. Love to you and Ryan ❤

Reply
Led Bradshaw link
11/12/2017 04:35:56 pm

Absolutely amazing. Thank you for allowing me to see into your world. My son Jacob is seven years old and dreams of making cartoons. His talent is amazing. Truly inspiring.

Reply
Myra
10/18/2018 07:32:16 pm

Hi Kathy! I just came across your blog and I can relate to most of what you've written. Thank you for sharing your story and for being a voice in the advocacy for autism awareness.

Reply
Len link
10/21/2018 03:43:44 pm

You are an amazing mother taking a big role to knowing your child and introducing him well, more appropriately than any professionals can do.

Reply
Melissa
8/15/2019 12:27:53 pm

My son was just diagnosed with ASD. He is 13(in one month) and I stumbled upon your blog. Thank you for sharing your story. Jonathan loves Minecraft as well and loves music. He does excellent in Science and Social Studies but struggles with writing with a pencil so his grades in math and english show it. I am attempting to get him an IEP to help him succeed in school. How did you go about doing this and what should I expect? I tried to get him an IEP last year but because he was not formally diagnosed with anything the school refused to give him any help. So this Summer I spent $1000.00 getting him evaluated/tested at Southern Illinois University in Carbondale Illinois. They have Diagnosed him with ASD, Dyscalclia(sp), and a few other things. I am hoping now with the diagnosis he can get help. I just want him to be able to open his locker with out problems. The Psychologist suggested he shoud use a lock with a key as he transposes the numbers on a regular combination lock. However, the school has taken away his lock/key until they all have a meeting and decide my son needs it. My son was devistated and I was heartbroken as we had given the school a set of keys to his locks as well. It was his first day of 7th Grade yesterday. Do you have any tips or webpages I could go to to get information on what to expect or how to help him succeed. I hope the school gets the IEP meeting together soon so my son can use his lock/key and not get his locker zip tied for not using a lock. Any information would be greatly appreciated!!

Reply
Ashlee Moody link
11/23/2020 05:26:52 pm

This iis a great blog

Reply



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