Finding Ninee » Sharing our parenting and special needs stories with heart and humor.

What’s the big deal about autism?

What’s the big deal about autism and special needs anyway?

Well, for one, according to the CDC, 1 in 68 children are on the autism spectrum, and 1 in 42 of them are boys. They also share data that says one in six (ONE IN SIX, friends!) children have some type of developmental delay. That’s a pretty big deal, if you ask me.

It’s a pretty big deal.

And yet, it’s not.

My son’s developmental delays put him on the autism spectrum. He’s got fairly severe speech and language delays, fine motor skill delays, sensory processing issues, nut allergies, is controlling and a bit OCD, has self-regulation and boundary challenges, and, well, some other stuff, too. Much of his stuff looks like autism.

But those things? They’re mostly not a big deal. While they are issues that need support, guidance, and encouragement, they don’t really have much to do with who he is.

Because while some of Tucker’s challenges look like autism, he does not.  He just looks like Tucker.

He’s him, and he’s my definition of love.

My little boy Tucker is full of light. Magic. Hope. He’s full of mischief, he’s funny, and he’s sensitive. He loves. He’s affectionate, and compassionate. He’s caring, playful, and beautiful, on the inside and out.

So I ask, if one in 42 boys falls on the autism spectrum, what’s the big deal?

Shouldn’t that mean that they’re almost the norm, these days? Shouldn’t that mean that, as part of the wide rainbow of life, that children with autism and developmental delays are just part of the picture? That there are so many of them, that singling them out for something that does not define them would be cruel and even a bit silly?

You’d think so. But we still need awareness. Acceptance. Today, tomorrow, and on all of the days.

This is Tucker.  He is, as you can see, many things.

The faces of autism

 

I never did get the big deal about autism and special needs. Until they entered my life.

And I will spend the rest of it trying, in all of the ways, to raise acceptance for my little boy, and people like him. And for people completely different from him.

Because that’s what it’s all about.

And, please, if you have a moment, check out, and share if you feel it, my posts on Autism Speaks this week.

Eight reasons I ask you to light it up blue, and
10 things autism and special needs parents wish you knew.

Note: the 10 things post is the most viral I’ve ever gone and I thank you all for that. The 8 things….being as yesterday was world autism awareness day, Autism Speaks’ website was wonky, and they didn’t post on social media until today. So if you commented or shared when it was new, I thank you, although I am not able to do so publicly there, as their site MUNCHED ATE your comments and likes. Still. THANK YOU. You people fucking rock.

This has been a Finish the Sentence Friday post. Today’s sentence is brought to you by the lovely Katia, of I am The Milk (also an Our Land contributor). Show her some extra love huh?

Your hosts: Janine: Janine’s Confessions of a Mommyaholic
Kate: Can I get another bottle of whine?
Stephanie: Mommy, for Real
Me (Kristi): Finding Ninee




by Kristi Campbell

email a friend

  • Janine Huldie - Awareness and acceptance is truly what we all need and I think you are truly awesome, as well as amazing for all you have done to promote this. Seriously, Tucker is so lucky to have you and is just an mazing little boy, too! Hugs 🙂April 3, 2014 – 10:03 pmReplyCancel

    • Kristi Campbell - Thanks, Janine. I’m lucky to have him and hope hope hope that the world will be kind to him. So much.April 5, 2014 – 12:37 amReplyCancel

  • Sandy Ramsey - Aaaand, she does it again! You are a superhero! Don’t argue.April 3, 2014 – 11:20 pmReplyCancel

    • Kristi Campbell - Ha, Sandy. Def not a superhero but thank you for getting the importance of the message and for your lovely support.April 5, 2014 – 12:38 amReplyCancel

  • don - Tucker is lucky to have you on his side!!

    It’ll be interesting to see what becomes of all these great little ones when they grow up, for sure. We all need to figure out a way to make sure their lives are meaningful. You’re a great mom, Kristi. You were given Tucker for a reason. Imagine if he’d been born to somebody who didn’t love him as much. That’s tough to think about I bet. You were made for each other.April 4, 2014 – 12:05 amReplyCancel

    • Kristi Campbell - It really will be interesting to see what becomes of them and how the world accepts them. I know it’s different now than it was when we were kids and they were all just in homes or whatever which seems really dumb but I guess it was the way it was. And thanks for the great mom and me being given Tucker for a reason stuff. I agree that it’d be awful for him to be born to a family of assholes.April 5, 2014 – 12:40 amReplyCancel

  • Robin - I just found your blog this week; congrats on your viral post. I was sucked into it. I too wonder what’s the deal? I too have a son, he’s 9 now, and has so many gifts. I was happily going about life aware of his super-strengths and weaknesses (and nut allergy also…), but in a label-less world, until late in 1st grade the school forced a label on us. As with any kid, some things they excel at, some thing are harder for them. But labels appear to be the only way they qualify for help in the US–and like you said, this is more the norm for boys, so why this is the case baffles me. Really look forward to joining your community of like-minded mamas….April 4, 2014 – 6:26 amReplyCancel

    • Kristi Campbell - Thanks huge, Robin!! The labels suck, but you’re right – they do help our kids to receive support so maybe the label doesn’t matter as much as the support? Gah, I don’t know. Tucker actually has an educational diagnosis of autism and his developmental pediatrician has reluctantly given him one so we could get better speech therapy but she’s said she “doesn’t know.” While that’s frustrating, I’m also trying to not let it bother me. If he gets speech and OT for his fine motor stuff, and we’re working on his social things…does the diagnosis matter?
      Thanks so much for the visit and the comment. I look forward to getting to know you better, too!April 5, 2014 – 12:43 amReplyCancel

  • Misty @ Meet the Cottons - you’re always so awesome!April 4, 2014 – 7:10 amReplyCancel

  • Tamara - I laughed at “Boob Man” and cried at “My Baby.”
    And he always will be..both, I guess, but the first is too icky to think about?
    Tucker is the luckiest boy in the world! To get you as his mom.
    I’m lucky enough to meet you and call you a friend, even an “in person” friend. Soon.April 4, 2014 – 7:35 amReplyCancel

    • Kristi Campbell - I’m lucky to call YOU a friend and hahah to him always being a boob man. Not sure how I feel about that but yeah, he’ll always be my baby for sure. Can’t wait to have “real” photos from YOU to put into a collage!!April 5, 2014 – 12:45 amReplyCancel

  • Michelle AKA Dribbles and Grits - I loved the post. I also love that someone with your attitude is writing for Autism Speaks. Once upon a time, the autistic community wasn’t too fond of them because they made autism look like a terminal disease. They used to at least. I’m glad they are getting with the program to have someone like you writing for them.

    I just had a friend on Facebook tell me that he swears autism is part of our evolution, that it’s making us better people. That the future will hold a society of Aspies as the norm. I honestly think that wouldn’t be a bad thing because most of the issues an Aspie deals with are coping in a world that is unlike them.April 4, 2014 – 8:29 amReplyCancel

    • Kristi Campbell - Michelle, Thank you – writing for them felt great, and the amount of shares the posts got felt great as well knowing that I’m for acceptance of autism. From what I understand, there is still some controversy about them and I know some people in the autistic community are still not fond of them, but they are the biggest autism organization that I’m aware of so…anyway, thanks! I appreciate the support and your kind words!
      That’s interesting that somebody told you that autism is part of our evolution. I’ve not heard that theory before!April 5, 2014 – 9:42 amReplyCancel

  • Kate (Shakespeare's Mom) - What an amazing post. I love the way you say that Tucker is your “definition of love.” Just the other day I was talking to a friend whose grandson has been diagnosed with autism, and I said that while of course it would present challenges for his parents and for him, that really what it means is that he just experiences the world differently than we do. And as you say, with the number of children being diagnosed increasing, we are all going to need to learn how to support and interact with them just like we would for anyone, with any life experience or perspective that differs from our own.April 4, 2014 – 9:30 amReplyCancel

    • Kristi Campbell - Kate – yes! Exactly what you said! An autism diagnosis is not the first thing parents want to hear from a doctor or an evaluator but you’re right – they just experience the world differently from the way we do. It’s not a bad thing and supporting them is so so important. Thanks huge for getting it! And congratulations on Scary Mommy!April 5, 2014 – 9:44 amReplyCancel

  • Kerri - Here’s what the big deal is about autism….it’s not about the autism it’s about acceptance. And that my friend is what you do so well. You advocate not for Tucker but for every child.April 4, 2014 – 9:34 amReplyCancel

    • Kristi Campbell - Kerri! YUP. It’s the acceptance. Every kid deserves respect and acceptance. Every single one.April 5, 2014 – 9:44 amReplyCancel

  • karen - once again I am sobbing…what a beautiful post babe. “definition of love” is when I started crying and “my baby” made it worse.

    every child is so unique and different, every child has special abilities, skills, ways of learning, as a special education teacher and reading specialist it’s my job to learn how to adjust my lessons to fit them, not make them fit my lessons.April 4, 2014 – 9:48 amReplyCancel

    • Kristi Campbell - Sorry for making you cry, Karen!! You’re right that every child is unique and different and each deserves love and kindness. I adore the fact that you’re a special education teacher and reading specialist. I know I’ve told you that before but truly – such a great calling.April 5, 2014 – 9:46 amReplyCancel

  • That Girl Ryan - Does Tucker know he has THE BEST MOM ever? I can’t wait until you can show him all these posts one day. You are a rock star.

    I saw the excitement over your posts this week and I am thrilled for you. You deserve the recognition.

    PS: Where can I find the shirt, “Boob Man”? I will make it my life goal to have a boy one day to put him in that shirt.April 4, 2014 – 9:49 amReplyCancel

    • Kristi Campbell - Girl Ryan, Thank you sooo much! And re: the shirt “Boob Man” – I can’t remember where I got that one but I know there are funny ones at tshirthub.com. Tucker also had:
      I’m cuter than other babies
      I still live with my parents
      Lock up your daughters
      I suck, therefore I am
      Sucker
      and a onesie that said Recently Evicted. 😀April 5, 2014 – 9:52 amReplyCancel

  • Kelly L McKenzie - Oh those pictures just say it all. They do. He is one very special little man. Love the “a friend” ones the most.
    Keep on fighting Kristi. Keep on fighting.April 4, 2014 – 10:46 amReplyCancel

  • Chris Carter - Oh that sweet boy!!!! I adore those pictures!!! Every child is different and has special needs. EVERY child. Truly. And all moms are called to their purpose to embrace not only their own children, but those of other moms- with both honor and respect for their unique place in this world.April 4, 2014 – 11:52 amReplyCancel

    • Kristi Campbell - I love how you look at life, Chris, and yes to honor and respect for everybody. Everybody!April 5, 2014 – 9:53 amReplyCancel

  • Jessica - My question is, why is this so common all of a sudden? Is it because of some environmental/chemical/whatever change or has it always been there and we just didn’t recognize it? If it’s the latter, than yay to people who are starting to figure this out. We should realize people’s brains all work differently, regardless. But if kids are having issues because of the former, I am concerned. I’m not saying these kids aren’t amazing and beautiful and special just like everyone else, but we should be concerned about what’s in our environment and how it affects us. I obviously lack the information to really understand this, but if you have any insight, I’d appreciate it. And either way, education and understanding are key to acceptance. Whatever the reason, we need to accept people as they are and give them the support they need to overcome any sort of hurdle in their lives. Great post, and awesome job keeping the conversations going on this. 🙂April 4, 2014 – 1:03 pmReplyCancel

    • Kristi Campbell - Jessica,
      I don’t know the answer to that but there are theories of both an environmental change (some people believe vaccines are the problem – I’m not one of them), and ones that people are being diagnosed earlier and better. Honestly, I don’t have a clue why there are so many more being diagnosed, and I agree with you that it’s concerning and that we should – as a society – try to figure out what’s going on AND figure out the best way to support these kids moving forward.
      Thanks so much for all of your awesome sweet comments and encouragement, my friend.April 5, 2014 – 9:58 amReplyCancel

  • clark - So much of the world is personal and the biggest shame is that more people don’t understand that…really understand it, to the level that your reality is as real as any reality.
    I feel bad for the people who are only able to live in a reality as defined by others, fortunately for Tucker you are one of those people who know that the world that you know is the only important world and while that does not mean that we can wish for a million dollars or fly (without machinery), it does mean that the people in our lives are so, way better for our choice and strength in knowing the best world.April 4, 2014 – 2:04 pmReplyCancel

    • Kristi Campbell - I love your words “your reality is as real as any reality,” Clark. Brilliant as always. Here’s to the worlds that we know being full of import and no doubt due to the Rogers and Scotts!!April 5, 2014 – 10:00 amReplyCancel

  • Dana - If I could sew, I would make you and Tucker matching super hero capes. Actually, I’d make them for everyone in Our Land – it will be the required uniform.April 4, 2014 – 2:12 pmReplyCancel

    • Kristi Campbell - Dana, you’re so awesome. I love the idea of everybody in Our Land wearing superhero capes.April 5, 2014 – 10:03 amReplyCancel

  • Piper George - Until I became a mother I never really knew anything about autism – now I seem to know so many parents who have a child who is being/has been assessed. I don’t get why there seems to be more and more kids receiving a diagnosis these days. Is it because in years gone by we didn’t know what to diagnose and they were just labelled differently or because there are factors in our environment that are causing more issues or just because now we can recognise and work with children who need more help in one thing or another? I do know that these are just kids, and thats it. Loved, playful, learning, special, just like any other child.April 4, 2014 – 3:18 pmReplyCancel

    • Kristi Campbell - Piper,
      Honestly, I’m not sure why there are more kids these days. There are differing theories out there, some lead to environment, some to vaccines, some to more appropriate and earlier diagnosis. I have no idea but yes you’re right – they’re just kids. thanks so much!April 5, 2014 – 10:05 amReplyCancel

  • Lisa @ Golden Spoons - I just love you! And Tucker! (Is that weird? – I don’t mean it to be weird!) Even thought I have never met him, I see his beauty and energy and personality through your words. I hope – I wish- that’s what others would see, too.April 4, 2014 – 5:22 pmReplyCancel

    • Kristi Campbell - Lisa, HAHA no not weird. I feel the same way! I’m so grateful for you and the entire blogging community. Many nights it’s you guys who have saved me from sadness and loneliness. xoApril 5, 2014 – 10:07 amReplyCancel

  • Teresa Kander - Awesome….I love the pics of Tucker showing who he REALLY is. And he is blessed to have you there to advocate for him.April 4, 2014 – 5:39 pmReplyCancel

  • Tarana - He looks like an amazing kid, and that’s why we need Autism Awareness. So we can get to know him better. Love those pics!April 4, 2014 – 6:28 pmReplyCancel

    • Kristi Campbell - Thanks Tarana. He’s a pretty amazing kid for sure (and I’m totally not biased haha).April 5, 2014 – 10:12 amReplyCancel

  • Anna the Flutist - Why do “autism organizations” not listen to autistics? They have the personal experience and are therefore one of the most valuable resources of information.April 4, 2014 – 10:10 pmReplyCancel

  • Marcia @ Menopausal Mother - Tucker is all things beautiful. Such a lucky boy to have such a loving mom. The collage you did here is just amazing. It’s so cool to think one day he will look at all these amazing things you have written and shared about your journey with him, and he will be so proud to have you as his mother! XOApril 4, 2014 – 11:48 pmReplyCancel

    • Kristi Campbell - Aw Marcia! Thank you so very much. I hope he will love all of these posts one day!
      xo back at you, friend!April 5, 2014 – 10:15 amReplyCancel

  • Kat - Those who have never been the parent of a child on the autism spectrum can never truly understand the “big deal” about it. The most we can do is listen, try to understand and, above all, be supportive. You are obviously Tucker’s biggest supporter and trumpet your love for him to the hills. He is such a beautiful, lucky boy 🙂April 5, 2014 – 10:03 amReplyCancel

    • Kristi Campbell - Kat, thank you so much. Listening and trying to be supportive is everything. Thank you for doing both. 🙂
      Oh and totally feel free to steal the word “dumbutts!!” hahaApril 5, 2014 – 10:19 amReplyCancel

  • Kerith Stull - Love this. Truly touched my heart. And that one idea…. shouldn’t autism in boys be more of the norm now that the rate is so high… Wow. Never thought of it that way. Hate to think about autism being the norm, but it is an interesting thought indeed.April 5, 2014 – 11:22 amReplyCancel

    • Kristi Campbell - Kerith, I never really thought about it that way either but since there are so many, it really does seem like it should be less of a scary word, ya know?April 5, 2014 – 3:40 pmReplyCancel

  • Echo - Kristi, you are truly an inspiration. I don’t know how you do it. Tucker is so lucky to have you in his life, advocating and spreading awareness for him and all of the kids in the world.April 5, 2014 – 12:26 pmReplyCancel

    • Kristi Campbell - Echo – I just read your post and talk about inspiration!! I’m totally inspired to go to the gym now. And honestly, Tucker deserves a world that will love and respect him. I just want to get a few people to not be so freaked out by the word autism, ya know? And thank you!!!April 5, 2014 – 3:51 pmReplyCancel

  • Kenya G. Johnson - Love how you put the pics together. I’ll go share the article again just in case it didn’t take. It’s a new day anyway 😉April 5, 2014 – 5:27 pmReplyCancel

    • Kristi Campbell - Really? You shared it again? Thank you so so much! I really appreciate it. Huge.April 6, 2014 – 7:28 pmReplyCancel

  • Lisa @ The Meaning of Me - You’re like the best mom ever, Kristi. The pictures are fantastic – Tucker is fantastic.April 5, 2014 – 10:34 pmReplyCancel

    • Kristi Campbell - Not the best mom ever but thank you Lisa! I can’t wait to read your TToT! I’m trying to eek one out right now…xoApril 6, 2014 – 7:29 pmReplyCancel

  • BB - Seeing a generation of such fantastic parents rise up to confront the issues that developmentally disabled children face has been a true joy to me. Thank you for being an advocate for your son. Thank you for understanding him.

    It will make all the difference in his life.April 5, 2014 – 11:03 pmReplyCancel

  • Katia - Ever since reading your post from last week (or was it a couple of weeks ago) where you’ve mentioned the “what’s your challenge” initiative, I’ve been thinking about autism differently. I think that the terminology “on the spectrum” implies that there’s an “us” and “them” and within “their spectrum” there are different shades and colours whereas “what’s your challenge” groups us all together, the way we should be. This week’s post just further solidifies this in a perfect blend of emotions and statistics.April 6, 2014 – 2:02 pmReplyCancel

  • Kimberly - Boob man…hee hee.
    I had no idea that those statistics were incredibly high especially among the boys. My nephew is on the spectrum. It has taken years to get him tested (his mom was in denial that he had problems in development…which is totally understandable because it is a scary thing). He is such a beautiful soul…who does get a lot of flack for being “different”. No one knows his story or who he is as a person. It’s sad…but the ones who love him know 🙂April 9, 2014 – 7:35 amReplyCancel

  • Michelle - Congrats on the viral post – you deserve it! That was a great one! I always love what you write! And Tucker is an amazing kid…great things ahead for him!April 10, 2014 – 9:56 amReplyCancel

  • Rachel - I know I’ve written this before, but he’s very lucky to have you as his mom. You are such an advocate for him and for all kids with Autism.April 11, 2014 – 1:30 pmReplyCancel

Your email is never published or shared. Required fields are marked *

*

*

N e v e r   m i s s   a   n e w   p o s t !