I see it on the time online from parents with kids with autism. Big declarations of where their kids fall on the spectrum. High functioning, severe, moderate, diet (no wait a minute. Scratch that last one). I'm also peppered with questions from you guys where The Kiddo is at too? Here's the thing. I don't know. I can't pinpoint him in one category I've even been accused of making up the mere existence of my kiddo in order to have a blog. Yep, that's right. I'm totally faking this all. All the big money is in autism blogging. Everyone knows that. I just love me some free sensory toys swag! I'm totally chewing on some chewy tubes right now while sitting on a therapy ball.
Part of this is because I don't share his picture or name, I am sure. How can I prove his autism to the doubters. Here's the thing. He didn't ask me to write a blog about him, so that's not changing anytime soon. Despite him being the most handsome creature on earth, yes, I will continue to deny you the pleasure of his face. Sorry! So I guess I'll make a little list for you. I understand your need to want to put him under a label. You want to organize your blogs. Hey, autism lives here. I completely get that.
I have a kiddo who can look up and find hotel deals on the Groupon App on the iPad but he can't tie his own shoes.
I have a kiddo upon hearing his music therapist play a chord on the guitar can go over to the piano and find the same chord on there. Did I mention we don't even have a piano? He's never taken a formal lesson. He still can't sign his own name without a lot of help.
I have a kiddo who laughed out loud when a tiger at the zoo roared so loud that the ground shook but is scared to death at the sound of a fly buzzing by his head.
I have a kiddo who can tell you the number of any hotel room we have ever stayed in and the location. Every number theater and what movie we saw in it. Everyone he ever meets birthday but he couldn't give you the directions to our house from school to get him home.
I have a kiddo that can tell you his father is a lawyer and works in an office but he has no idea really what that means.
I have a kiddo who loves being around other kiddos but as soon as he is he completely ignores them. Yet when I tell him it's time for us to leave, will meltdown if I didn't give him enough time to prepare for leaving the very kiddos he is busy ignoring.
I have a kiddo that has brought me to my knees crying in frustration countless times. I have a kiddo who has made me so happy that my heart could burst.
I have a kiddo who couldn't say his own name till he was five years old but at eight years old walked on stage at a holiday concert and in front of a packed house of hundreds introduce the next song that they would sing.
I have a kiddo who is so set in his nighttime routine that he cannot skip a single part of it, despite falling asleep during it most nights. If we try to skip parts, meltdown city.
I have a kiddo that still has trouble balancing or hopping on one foot but he can whiz around the neighborhood on a scooter or bike with no problem.
I have a kiddo who will jump into any pool but needs prompting to remember that the water from the shower won't hurt.
I have a kiddo that can sing along to James Taylor's "Sweet Baby James" word for word but still has trouble speaking in full sentences and using the correct pronouns.
I have a kiddo that I love and that kiddo has autism. His autism. Kiddo autism and that's an autism I am still learning about each day.
Does this list prove it enough for you? Well then, if not, feel free to pick him up for a side of fries. I'm sure he'll be happy to prove his autism to you.
I have similar difficulties with Lily. Not so much not knowing where she is on the spectrum...but being able to explain her issues as they relate to other kids on the spectrum. She's unique. Just like everyone else.
ReplyDeleteThis is why I love the saying "When you've met one child with Autism, you've met one child with Autism"
DeleteLOVE THIS!!
ReplyDeleteI've gotten that too. I was so heated that someone commented on a post that Norrin didn't sound like he had autism. And I get tired of being asked where he falls on the spectrum because I don't know. And honestly, I don't care. His 'place' on the spectrum doesn't matter and it shouldn't make a difference. He's just a sweet kid with an amazing head of hair :)
You are so blessed to have such a wonderful son!!! I have a daughter who is somewhere on the rainbow but they can not pinpoint where she is and no matter how hard i try to explain her or give a "heads up" warning to anyone we come in contact with they think she is fine and is just babied too much. Have you ever come across that?
ReplyDeleteI like the phrase "If you have met one person with Autism you've met one person with Autism!"
ReplyDeleteMy son is 19. He has multiple special needs including Autism. I get the look from people/educators/family all the time because they don't believe he is Autistic. He's too social and or too verbal. Trust me - if you live in our world you know he's ASD - from the sensory pieces to his perseveration on Hitler and Neo Nazi World War II history. A severely dyslexic kid who has read Shindler's List, can name the starting line up of the Bruins, can run music and movie categories in Jeapordy but who can't follow multi step directions or do 3rd grade math, A six sport star Special Olympic athlete who cannot/will not shower without signficant cueing and significant OT intervention. A young man who emceed a signficant Special Olympic find rasier in front of a crowd of people but won't ask for help in a store.
Autism is as individual as our children's brains are. We need to respect that and support all parents and children in this community.
Unfortunately my husband and I have been having the same disagreement. Our son 5 is newly diagnosed, and those are the same arguments my hubby used. He is too social, too verbal. And I am like, but he won't shower or wear socks but can name any character in any movie and recite their dialogue....
DeleteHusbands come round eventually, they start to see the little differences eventually. They sometimes struggle with not wanting their child to be anything other than perfect. ( mums know that they are perfect anyway )
DeleteI get a lot of this from my kid's friend's mothers. Yes he's got friends, yes he goes on play dates, yes I know they are only trying to say it's no big deal. Except sometimes it is a big deal, usually after he's come home and it's all been too much.
DeleteKatie, that was beautiful.
DeleteOmg my two favorite bloggers in the same “room." I love you both ladies! I am glad you posted this because we as your followers (most of us I see) follow you because you understand us and for once we can read your posts and understand you. It makes me feel human knowing there's people out there that understand what my situation is like. It makes me feel that I am not alone & not going crazy!!! People are so stupid sometimes, pictures or no pictures it's still awesome knowing YOU exist and you can relate! <3
ReplyDeleteThat pretty much sums it up!!! He is a kid, all kids (people!!) come with a different set of abilities and disabilities. I have always tried to steer clear of the functioning label as well. I mean, what level of functioning as a human am I?!? High because I can run 5 miles, or low because I meltdown when I have to change something in my routine? If I can't label myself, why would I ever place another unnecessary label on any of my children? Love it!!!!!
ReplyDeleteI love this.I love that you are naming all of his positive traits before his weaker areas. I love how you are celebrating him and loving him and letting him be a "kiddo" first,autism second.Great Job!
ReplyDeleteYour boy is awesome. Clearly, the apple didn't fall far from the tree. ;-)
ReplyDeleteSeriously though, I hate that people think anyone of our autistic loved ones can be pigeon-holed into a "place" on the spectrum. We don't do that to neurotypicals with respect to our likes or strengths or fears or much of anything else-- except politics.
And whoever thinks you need to prove anything to any of your readers about your kid? Pffft. I'm sure you can imagine the phrase I'm thinking... ;-)
Thank you for this. I am right there with you. People love to tell me how high functioning Finley is 5 minutes after meeting her and assuming I must be blowing things out of proportion or that she will just grow out of it. It is hard to put into words until like you said, come pick one of our kids up and spend the day with them. Saving this article and whipping it out next time someone attempts to categorize my daughter.
ReplyDeleteYou just put in to words how I feel about my daughter who is contradiction after contradiction (like myself) yet no matter how loud I yell, no one around me sees the issues I do the same way.
ReplyDeleteI don't feel our kids would necessarily appreciate their lives, and pictures splattered all over the internet for strangers. Strangers who don't understand their special place in society.
ReplyDeletePeople who judge, or expect a behavior just because they know someone who knows someone with autism.
Good for you! Each child is so individual, and has their own mannerisms and we should count our lucky stars that we get to know them and we don't have to share them with our cruel world. A world that doesn't even try to understand or embrace their unique gifts.
The school flat ARGUED with me and the Speech therapist refused to see him any more because "he's too verbal to be autistic" and then "we think he is bipolar." When asked after numerous meltdowns and bolting episodes what we could do to make school successful--my boy says "put me in the library by myself to do my work." that wasn't an acceptable answer so we now home school. My boy builds complex machines, all symmetrical from every side, with well thought out implements, but he cannot tie his shoes or ride a bike. My son can name all bugs/insects as the flash across a screen and their defense mechanisms, but he can't remember sight words. My son loves kids, absolutely would kill for friends, but when in a social situation arrises the anxiety gets so much that he's like a kid on crack---aggressive, agitated, flighty. Its very very sad. But he's the first kid to help if someone is hurt; to make a gift for an ailing friend; to give his treasures to someone he admires.
ReplyDeleteThis is our autism----and I wouldn't change it. He's an amazing, witty, bright kid that drives me bonkers and keeps me laughing. <3
You have pretty much just described my son. He is 6, diagnosis of asd adhd spd etc at 5. I have pulled him out of school to homeschool for the exact same reasons, meltdowns running etc. He desperately wants friends but behaves exactly as you have described, like he's on crack...everything you have just described, it's like you're describing my little boy...
DeleteI pretty much refuse to use labels. By the standards of other people, my son can fall under any category depending on the day. There are days when he is so verbal, you would think my 13 yr old was in college. Other days, he is pretty much nonverbal except for a few choice words that I won't repeat. I think people get caught up in functioning labels and can't see the individual child. Keep on keepin' on Mama Fry! Love your blog!
ReplyDeleteI feel you. Why do we feel the need to categorize our kids? We can say, "My kid has high functioning autism" and feel better because at least it's "not as bad" as the other kid? The truth is my kid outwardly doesn't look like he has a problem. He will even talk to other kids, laugh, do age appropriate things. The flip side is he can't tie his shoes, noises freak him out, change the rountine and we are in trouble. Autism comes out in all different ways, and we need to remember you don't have to prove (to autism moms at least) how "bad" your kid has it. We all understand.
ReplyDeleteKiddo sounds amazing. Who wouldn't protect their child's identity if they are blogging to the whole world, in the hopes of a large readership? Duuuuh! Even the doctor who diagnosed my kiddo didn't pinpoint the exact place on the spectrum. And, now that we have another major health issue of his under control, another doctor says he's not sure where on the spectrum my kiddo will end up! And things change with therapy and as kiddo develops, so it really is fluid.
ReplyDeleteThank you for this. So many friends and family think I'm making it up, because my son is wicked smart and loves to be around people. "Can't be autism." Really? Because he's above grade level in school and likes the company of others, he's "normal" in their eyes. Ha! I hate having to explain so I don't anymore. He's only 10, and I hope my not explaining him to others shows him he doesn't need to explain himself either.
ReplyDeleteI always get the he looks normal if he didn't have a 504 I won't even know he's autistic. My son is 16 and my mom lives with us, unfortunately she just got married to a man who refuses to become educated on autism and I am constantly getting the get him in like and stop those tantrums. It infrerates me.
ReplyDeleteI loved this, my son is 18 and we get all kinds of crazy looks when we are out at like Walmart and he is flapping his hands and singing how deep is your love. I love it.
ReplyDeleteI loved this, my son is 18 and we get all kinds of crazy looks when we are out at like Walmart and he is flapping his hands and singing how deep is your love. I love it.
ReplyDelete