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

My Developmentally Delayed Boy Works Hard

It being Thursday came as a surprise to me more than once today, which is not necessarily unique. What may be unique is that I’m continually startled by my surprise over what day it is. As if by now, I should have mastered knowing that I’m always a bit behind and overwhelmed and let’s face it, scatterbrained.

On days like this, I feel like a confused character in a book – a ditzy librarian lost in her own snuffly world, wearing a cardigan, a lopsided skirt, and shoes too comfortable to look good with any outfit. I picture her startled eyes, blinking and confused behind glasses. I can see that it is indeed Thursday escapes her completely until BING!

Librarian wondering what day it is

“Right! Thursday then! Monday was a holiday, Tucker was sick on Tuesday and Wednesday… Thursday!  Right. It’s Thursday.”

While busy, overwhelmed, and finding myself wondering where the hours and weeks have gone, I can’t really say that any of that’s due to a string made up of hard days spent working. Obviously, going to work and being a mom and remembering to be a person and wanting to be a writer feels overwhelming and occasionally like something close to panic while wondering how I’m ever going to get all of the to-do’s done. But, it’s not like I’m a landscaper who digs and plants and grows real things in the summer heat and humidity, or a road worker who stands in hazy asphalt each day making it so that we can get from home to swimming lessons more smoothly. You know, it’s not like I’m really putting in a hard day of work.

So instead of talking about what a hard day of work looks like for me, I’m going to try to capture what I imagine it looks for my developmentally delayed little boy, who is five, mistaken for eight due to his height, and filled with the biggest light and hope and hard work of anybody I know.

FindingNineeTuckerPark

TUCKER:

We’re in the car to sign up for my birthday party today! I know my birthday isn’t until July but my mommy said that we could have a party early this year so that people can come, because I went to two birthday parties already and I want to have one! I ask my mom and dad for presents when we go to Target which has a circle sign that is red and looks like a target for a bow and arrow. Mostly they get me a present and I put it in a huge birthday bag because I want birthday presents for my birthday!

I know mommy is nervous about the party and whether people will come and whether it will Be Okay. I’m having a swimming party with an obstacle course and a bounce house even though I don’t know how to swim after taking lessons for so long with Mr. Steve.  I think I can almost swim because when he throws the rings to the bottom of the pool, I claw my way by holding on to things and to Mr. Steve and I get them and I can hold my breath but I can’t get to the edge of the pool from the middle by myself which is the only thing my mommy has said she wants from these “damn lessons.”

I work hard at school. I learned how to say “ELLLLL” recently and now can say “Lowwipop” and “LLLLIKE” and “LLLLOVE” which mommy thinks is super-cooLLL awesome and she kisses me which is kinda for babies but I like it when she jumps around and says “GREAT JOB” and rubs my head and tries to kiss me even when I tell her not to.

I work hard at speech class and I love speech class. My teacher is lots of nice (“lots of” means more than a few because I asked) and she gave me a smelly but not stinky sticker for my hand that smelled like cupcakes this week when I did a good job on my project and tried to make a new sound.

Sometimes, I get confused by my old sounds and my new sounds and I don’t know why that boy named Nico on the bus was mean to me because I’m already in speech class when he said I need to be in speech class. I didn’t like it when he pushed his head into my stomach too hard and it hurt and I didn’t get it and I love speech class so that wasn’t mean but mommy and my teachers told me I was So Good for telling them. I don’t know why Nico hit my tummy with his head because I love speech class and I work hard there and am so proud. But I’m not happy that maybe my friend on the bus is not my friend so I won’t sit by him anymore. The bus driver told me to not to.

I work so hard at making my Legos and I am really a Master Builder now, like in the Lego Movie but not really that good because I’m still a little kid. I’m going to be six soon though and I’m pretty sure that when I turn six, I will be knowing more about being a Master Builder and I like the Lego Blasters and light sabers and guns the best even though that part makes mommy make her sad face sometimes, because girls like flowers and trees I think. Even more than girls like Star Wars. I work hard though and mommy and I do battles with them and I am mostly the winner.

***fin***

accept special needs kids

MOMMY:

He does work hard. This little boy of mine didn’t really speak three years ago when he entered Preschool Autism Class. Today, he makes up games and creates crazy funny dialog between Lego characters. While I no longer think that the word autism is perfect for him, he has speech and language delays, and is thisclose to the spectrum. We’ll learn a lot more this summer and over the next year, as he’ll be taking more tests and evaluations. I have to say that I’m glad that we waited.

Just over one year ago, I was convinced, 100%, that Tucker has autism. So much of the spectrum was in our home and in our hearts and in his behavior. Today, though, I’m less sure… he’s highly socially motivated, and well, we’ll see.

I think it’s important to remember that parents of special needs children celebrate milestones differently than parents of typical children do. But that doesn’t mean that they’re sad, or that the typical parents need to feel sorry or feel pity for those of us living our normals.

We’re all just living our own normals. Life in my house is life in my house, and it is beautiful, frustrating, messy, crazy, fantastic, awful, and just life, with all of its faces. Same with yours. So before feeling sorry for our special needs kids, know that they’re just our kids. Accept them the way that you assume that we’ll accept yours. Adorable. Annoying. Treasured. And all of the betweens.

*** This has been a Finish the Sentence Friday post, where writers and bloggers gather to give their own takes on the week’s sentence. This one was “After a hard day’s work…”
Hosts: Me, (Kristi from Finding Ninee) and our co-host Michelle (this week’s sentence thinker-upper) from Crumpets and Bollocks.

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  • Reta Jayne - I can relate to the scatter-brained librarian you describe at the beginning. . . I feel like her most of the time. . . It is a struggle to piece thoughts together sometimes, but I recognize it is for very different reason than you describe here.

    It sounds like Tucker DOES work so incredibly hard on a day-to-day basis, but it seems like you do too — at making sure he is cared for & loved. Please don’t minimize THAT hard work in your recognition that he works hard too. How blessed you both are to have each other, it seems. . .May 28, 2015 – 10:05 pmReplyCancel

    • Kristi Campbell - HAHA Reta, I so feel like her most of the time as well! Yikes. Thanks so much for the sweet words about working hard to ensure Tucker’s loved and cared for. I appreciate it! And yes, we’re blessed. I feel lucky every day.May 29, 2015 – 5:39 pmReplyCancel

  • Emily - I love the 2 perspectives you gave us here – Tucker’s and yours. You BOTH Work hard, but in different ways. I also never realized he’s tall for his age…so was big dude – maybe you’ll have a 6 foot 8 teenager too!May 28, 2015 – 10:51 pmReplyCancel

    • Kristi Campbell - Thanks, Emily! I’m so glad you like it! And yeah, he’s super-tall for his age. When we booked his birthday party the other day, the woman assumed he’s turning eight instead of six. And maybe he will be as tall as Big Dude!May 29, 2015 – 5:40 pmReplyCancel

  • Lisa Sadikman - I cannot really express how incredible this post is Kristi. I loved hearing Tucker’s voice and then yours but my favorite part is this: “We are all just living our own normals.” Amen to that. Sending you and Tucker lots of love and high fives for all the hard work. XxMay 28, 2015 – 11:07 pmReplyCancel

    • Kristi Campbell - Aw thank you so much Lisa! It makes me unbelievably happy that you liked it! And thanks for the love and high fives. I appreciate them too! xxooMay 29, 2015 – 5:42 pmReplyCancel

  • Sarah - Because this whole autism word has been brought up again, I’m all adither about it. I hate this cusp. Her psychotherapist said that three evaluators would probably come back with yes, no, and maybe. Course I’d hate the label too.
    She is who she is, and I should spend more time trying to get in her head like you do with Tucker.May 28, 2015 – 11:11 pmReplyCancel

    • Kristi Campbell - The whole label thing is so hard. On one hand, they help get services. On the other, some people focus on the label and forget to look at the unique kid as a unique kid. Sorry that you’re going through the yes no and maybe stuff right now.May 29, 2015 – 5:46 pmReplyCancel

  • Lisa @ The Meaning of Me - “We’re all just living our own normals.” That is perfect and true and beautiful. That’s EXACTLY what I tell myself around here. A lot.
    Know what I love so much? How totally you get him. You are awesome. God knew what He was doing when He picked you for Tucker.May 28, 2015 – 11:25 pmReplyCancel

  • Nicki - This. Is. Amazing.
    As are you. And Tucker.
    “We’re all just living our own normals.” All the feels. <3May 28, 2015 – 11:52 pmReplyCancel

  • Janine Huldie - Aw, Tucker definitely works hard, but has an amazing mama there to help him through it all! Oh and we are also trying to plan our July birthday girl’s party, tooMay 29, 2015 – 1:38 amReplyCancel

  • Anna Fitfunner - Glad to hear about Tucker’s progress! One thing to think about: it sounds like Tucker will continue to need special education services for several years to come. Sometimes it can be easier to get those services with a more “standard” diagnosis, like autism, than a more amorphous diagnosis or set of diagnoses (like PDD-NOS or GDD). The labels can hurt — but they can also help. Ultimately, only your husband and you can decide what Tucker will need and what is best for him…

    Good luck! Sending hugs for the very tall 5 year old on his birthday!May 29, 2015 – 2:22 amReplyCancel

  • Crumpets and Bollocks - Gabby went through a lot of what you explain Tucker going through. The next step will be reading after speech. While he’s still learning to verbally communicate, his peers are learning to read. And as far as social skills are concerned, he’s too young to see any autistic traits if he has them (outside of little things like not playing the game the same way everyone else is or not understanding what’s going on socially). Autism’s main deal is everything is heightened, and as kids mature socially, that interferes with socializing. Introversion is not really an autistic trait, though for many, it’s a learned behavior despite their natural personality, which to me isn’t a symptom of autism because it’s not an intrinsic cause but an external one. I’m just saying a lot of autistic kids play well with other kids at young ages, even some of the nonverbal ones. It’s because the kids are pure of heart yet, so they don’t care if you’re weird at all. It’s when they hit the age they start losing their innocence and embrace evil like bullying, sadism, manipulation, ego building, and other common traits of the neurotypical, that’s when you’ll see a social struggle because the autism generally remain pure at heart for most of their lives. Same deal with Down Syndrome. Those kids never grow out of the innocence. It’s really beautiful. I wish all people were like that.May 29, 2015 – 4:08 amReplyCancel

  • Bev - This was so sweet, Kristi! It sounds like Tucker is making fantastic progress. That must be so exciting! I used to work with children on the autism spectrum, and each milestone for a child with special needs really is a celebration (and those of us who work with them are so proud of their hard work as well!).May 29, 2015 – 8:00 amReplyCancel

    • Kristi Campbell - Thanks, Bev! He really is making wonderful progress – I’m so proud of him! I love that you get what each milestone really means! Thank you. xxooMay 29, 2015 – 6:01 pmReplyCancel

  • Dana - Labels are sticky (no pun intended) – you want them if they will help your child get the services he needs, but you don’t want him to be restricted by them. Who knows how you’ll feel about that label a year from now? So much uncertainty, but so much possibility.

    I love when you share Tucker’s voice with us. I want to meet him for real this summer – lets make that happen.May 29, 2015 – 8:58 amReplyCancel

    • Kristi Campbell - Let’s definitely make it happen so that you meet Tucker this summer! I’d love to meet your kids, too! And yeah, the label thing is rough. Sigh.May 29, 2015 – 6:02 pmReplyCancel

  • karen - Tucker is a hard worker, and he has a great support group who always cheers him on.May 29, 2015 – 9:24 amReplyCancel

  • Laura T Powell - I know that Tucker is working hard! I remember when my, now almost 15 year old, was in almost the same place. 6 years old, could barely talk, and wasnt’ ready for 1st grade like all the other kids – “sensory processing disorder” among many other autism spectrum issues. After 2 years of almost daily therapy (eye, speech, occupational, and physical therapy) though we did see significant improvements. (Even though they told us at 6 he was probably ‘too old’ for it to help. – Don’t believe them!) Lots of Mom-intervention, and home-schooling him in 4th grade really helped. He is now entering high school this fall, and is actually doing well – in AP classes and everything. Take heart and keep working. You will be surprised what can happen from all of your love and hard work!May 29, 2015 – 1:18 pmReplyCancel

  • Tamara - We’re planning a birthday party for our July baby too! Sheesh, it’s hard. Magicians and bounce houses and Lego themes, galore.
    Wanna come?
    I love the beautiful look into the beautiful mind of Tucker. That takes intuition and love of super-heroic proportions.May 29, 2015 – 1:59 pmReplyCancel

    • Kristi Campbell - It IS hard. But fun too. And so adorable and yes I want to come!!! And I love your comment! <3May 29, 2015 – 6:14 pmReplyCancel

  • Allie - Genius as always. I love when you write in Tucker’s voice. And re4st assured about the swimming – Cammy – who is the baby, has been taking lessons for three years. I’m starting to think it’ s scam….May 29, 2015 – 3:22 pmReplyCancel

    • Allie - Oh, and I meant to have a party for my July baby, too. Right when school got out, because he’s never had a school friend party – ever. Only a sibling of his older brother and sister. But, nope. momma dropped the ball.May 29, 2015 – 3:26 pmReplyCancel

    • Kristi Campbell - I hope it’s not a scam about the swimming lessons and thank you for your sweet words! And don’t beat yourself up about the birthday party. If Tucker weren’t so into having one this year, I’d just do our normal beach trip.May 29, 2015 – 6:15 pmReplyCancel

  • Roshni - They pretend to hate the kisses but they actually love it…really!!May 29, 2015 – 6:58 pmReplyCancel

  • Lisa @ Golden Spoons - I love when you write from Tucker’s perspective – I’m feel like I really am in his head for a little while. And, in the head of other kids, too. He does work hard for sure. You work hard, too, and being the best mama you can be for him. I work hard for my girls. We all work hard – different hards – but hard.May 29, 2015 – 8:47 pmReplyCancel

    • Kristi Campbell - Thanks Lisa!!! I think this is only the second time I tried to write from his perspective and I’m sure once he’s old enough, he’ll be like MOM!!! But yeah, he does work hard and I know you work hard for your girls, too. It’s the mama way, and it’s awesome and horrifying and awful and amazing.May 29, 2015 – 10:22 pmReplyCancel

  • Marcia @ Menopausal Mother - I love the way you climbed into Tucker’s head and went through a day in his life. You are so connected, and so very lucky to have one another.May 29, 2015 – 11:44 pmReplyCancel

    • Kristi Campbell - Not always connected but yes so lucky to have him! Thank you so much for your comment and for reading!May 30, 2015 – 12:00 amReplyCancel

  • Marty Sabolo - I am in awe of parents like you! Tucker is an amazing young man with an even more amazing mom. Thank you for sharing your stories with us all.May 30, 2015 – 2:36 amReplyCancel

  • Christine Carter - Oh I just loved Tucker’s part especially!!! You have such a git for adding his perspective!! What a hard worker that boy is!! Bless his precious heart!! And, um… can I see Nico? I have a few words to share with HIM… and maybe my head might find its way into his tummy. Pff.

    YAY for birthday parties!! And if I know Tucker, through you, then I am betting he will have a total BLAST no matter who shows up. (But secretly praying they ALL DO for that sweet heart of a boy!)May 30, 2015 – 3:20 amReplyCancel

  • Heidi Hotzler North - Hugs to all our hard-working special kids that don’t even know they are soooo hardworking. Therapy and special schools and programs on the weekends when the neighbor kids are just playing in the street…one day we hope to join those kids, but for now, our normal works for us.May 30, 2015 – 3:41 amReplyCancel

  • Elizabeth - I love how hard they work – when I think of all the work he has done, I am so proud of my guy. 🙂May 30, 2015 – 10:11 amReplyCancel

  • A.C. - The Academy for Precision Learning (http://www.aplschool.org) is a K-12 school that provides a nurturing, inclusive, and individualized learning experience for neurodiverse students. APL offers targeted opportunities that promote the academic achievement and social development of students who benefit from a smaller, supportive learning environment. Students are engaged in developmentally appropriate, data-informed, individualized experiences that put them on a path to achieving their greatest potential. APL meets our students where they are at, supporting each student to build on their unique strengths to become a curious and engaged life-long learner who celebrates diversity, practices self-advocacy, and generates impact in their community.May 30, 2015 – 2:33 pmReplyCancel

  • Kim - Every time I read one of your posts I think that Tucker is an amazing boy!!
    And, today I see him in his cute little hat (I’m pretending that it is a Texas Longhorn one even if it’s really that other UT:)!!!
    I hope you and Tucker are set to have a super summer!!May 30, 2015 – 8:32 pmReplyCancel

    • Kristi Campbell - Aw thank you Kim! He IS an amazing boy! So brave and full of light. All kids are, I know…but he’s mine so I guess I’m allowed some bias. LOL to Texas instead of TN. It’s orange and his name begins with T and his favorite color is orange AND his dad grew up in TN. It’s sorta a thang.May 31, 2015 – 8:01 pmReplyCancel

  • Brittnei - I’ve missed your blog! I’m glad I came over tonight and read this post. I love how you gave what you thought Tucker’s perspective on things in his life are right now and yours. I’m so sorry about what happened to him on the bus. I’m glad things seem to be going ok right now. I love how you describied how he’s evolving. I think I just realized something about your explanation of not really being sure that he has autism. I’ve transformed over the last few months and one thing I can say for certain is that I try to steer clear of labels. This is most likely the reason that I didn’t see Tucker as autistic even months ago when we first met. 🙂 I just saw Tucker. The cute, adorable kid that has a super cool mom who keeps it real with the world as she writes it as she sees it. Everyone is just an individual in my eyes…learning and growing as they are. Though I choose to stay clear of labels and just focus on who people are as they are, I do respect some people’s desire to use them for whatever reason. We all have to do whatever we think is right for us. 🙂May 30, 2015 – 11:34 pmReplyCancel

    • Kristi Campbell - Brittnei!! I’ve missed you, too! I’m so proud of you with your new project – so important and powerful! And I do remember you telling me on IM like maybe a year ago that you don’t think Tucker is autistic. We’re definitely dealing with quite a few delays but I no longer think so either AND I don’t CARE if he has the label or not – it used to feel like a big deal but you’re right – what’s a freaking label? Kids are kids are kids and people are people are people.
      xooxoMay 31, 2015 – 8:04 pmReplyCancel

  • Stephanie Fidelak - I loved reading from Tucker’s point of view! He is working so hard!!May 31, 2015 – 3:58 amReplyCancel

  • Kelly L McKenzie - “We’re all just living our own normals.” That sums it up perfectly. And what a wonderful little man Tucker is for telling you about Nico and the episode on the bus. It must have been gutwrenchingly difficult to hear it.
    I”m off to share this beaut of a post.May 31, 2015 – 11:12 amReplyCancel

    • Kristi Campbell - It was So hard to hear it, Kelly!!! And yeah, we ARE all living our own normals, right? I mean, yours with raising your children alone and your awesome mom with her purple pants, and all of it. Me, here, and yes I’m so so glad he told me about Nico on the bus.May 31, 2015 – 9:41 pmReplyCancel

  • Linda Atwell - Oh Kristi: I love, love, love this post. I love how you show that Tucker works so hard (from his perspective). I love that you recognize that he works so hard. And I love that you just write and get all these thoughts down to share with us. But what I was especially drawn to in this piece was how “not sure” you are about his diagnosis–even though you might have been more sure months, years, etc., ago. I wrote you a private note and have been “not sure” myself about many Lindsey things recently. One of them: vaccinations. For years, I would have sworn the pertusssis vaccination caused her seizures, her tremors, well, basically everything that made her life difficult. I was certain it was the vaccine’s fault. But the older she’s gotten, some of the things the doctors initally told me have come true–totally unrelated to that issue. I couldn’t understand how doctors could predict some of the things they were when Lindsey was only 6. How in the hell could they know??? But, apparently they did. And in many ways, Lindsey has exceeded many of the expectations because she had a family who believed in her and patted her on the back and encouraged her to do more and try harder and just do what she could. And everytime I read your posts, I know in my heart you have the exact same type of family and Tucker will be a superstar because of it.

    Thanks for writing this post. It touched my heart––as always you seem to do. Happy last day of May to you my friend.May 31, 2015 – 9:29 pmReplyCancel

  • Carin Kilby Clark - I absolutely loved reading Tucker’s point-of-view. SO inspiring! And I love the line “we’re all just living our own normals” because it’s true for everyone. No two lives are the same and it’s important not to judge or critique and just live your own normal. Thanks for that!June 1, 2015 – 9:00 amReplyCancel

    • Kristi Campbell - Thanks, Carin!!! And yeah, we really are just all living our own normals. It’s hard to accept and harder to not compare but I think there’s beauty in there somewhere.June 1, 2015 – 10:30 pmReplyCancel

  • Rabia Lieber - Kristi, this is amazing! This sums up when I hear people say “I could never do that.” about any kind of hardship or atypical life situation that someone is going though. I always think, “you could do it if that was the way life was presented to you.” IN general people just have to roll with the hand life deals them. “Normal” looks different for every single person!June 1, 2015 – 11:57 amReplyCancel

  • Sarah Honey - I love how your wrote this post giving the 2 perspectives! “We are living our own normal”. Love that! It is so true. It’s so easy to compare our lives and our situations to others. It is so not worth it!June 2, 2015 – 10:44 amReplyCancel

  • Hanna - Your story is very inspirational! Thank you for sharing. I wish all kids with ASD had a mom like yourself 🙂June 2, 2015 – 5:08 pmReplyCancel

  • My Inner Chick - —Brilliant photo.
    Fabulous words.
    Adorable Tucker.

    xxxxxJune 2, 2015 – 10:48 pmReplyCancel

  • Pattie Thomas - I can’t believe that Tucker’s kindergarten year is almost over! He has made a lot of progress and it is because he works so hard. Love the two points-of-view!June 4, 2015 – 3:34 pmReplyCancel

  • Sandra - I won’t claim to know even a little bit of what your life is like. But growth and milestones are achievements just like any other. PS: I kind of wanted to kick little Nico’s ass…is that wrong?June 8, 2015 – 12:08 pmReplyCancel

    • Kristi Campbell - [email protected] NO it’s not wrong to want to kick little Nico’s ass! ME TOO!!! (also huge points to me that I didn’t right????)
      And yeah, the growth and milestones. They happen when they happen. Thank you!June 8, 2015 – 11:18 pmReplyCancel

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