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

Should I Say My Son has Developmental Delays?

Should I Say My Son has Developmental Delays?

Somebody I used to work with messaged me on Facebook to ask how my son is doing.  She’s never met him.  Normally, in a situation like this, I just type “Great!  He’s adorable! How are you?” and move on.  But I also used to work with her cousin. I saw him recently, and he knows that I started a blog about my little boy and his developmental delays.  I didn’t know whether he’d mentioned it, and so felt like I should say something just in case. It’s not like I’m hiding what’s going on.

Should I Say My Son has Developmental Delays?

And yet, I hesitated because I didn’t want her to feel sorry for me. At the same time, some of what’s going on does suck. Not knowing how much he’ll catch up is hard, as is having evaluator after evaluator use words like “delays,” “disability,” and “possibly autism spectrum disorder.”

At the same time, life doesn’t suck, you know? I don’t really know anything different. My son is my only child, so it’s not like I can compare his challenges to a sibling’s previously met milestones.

My little boy is amazingly wonderful and awesome times infinity.  He’s rainbows and unicorns and 4-leafed clovers.  He’s healthy.  He’s the sweetest, kindest, most loving little boy in the world.  He owns my heart.  My soul.  He has changed my world forever. He brings me sunshine.  He IS sunshine.  He gives me hugs and kisses and laughter and he gives me my HAPPY.

Is that what I should say?

Or.

Do I tell her that he’s healthy, and mind-blowingly wonderful and that he exploded my heart with love a kajillion times over, but…?

Do I tell her that I’m scared to death because he has a developmental delay and it may or may not be autism and I don’t know why he has it? That it really really hard when glimpses into typical kids’ worlds while on a shopping trip make me remember how few words my son says?  That he doesn’t chatter?  That even though on a logical level, I know it’s not my fault, that I can’t help feeling like it’s my fault?

On most days, I don’t really see anything different from what moms with typical kids see.  I see my three-year old going to school.  I see him learning new things.  I see him loving his teachers.  I see us, playing.  

I see a perfect boy.  But I know that he’s not “normal,” either.

What would you see, were you to meet him?  I guess that depends on what you know.  If you haven’t had kids, you’d probably see a shy boy who will warm up to you eventually if you try.  If you do have kids, you’d probably notice that he’s not exactly chatty.  That he’ll hide from you.  That even though he looks like he’s five, he’s only three and talks like a two year old.  A not very talkative two year old.

So.  What am I supposed to say? Do you want to hear that I’m terrified that my son may never speak properly and that his career options will hinge on that?  Do you want me to tell you that I hope he’ll find love, and have it returned by somebody worthy?  I believe he will be loved.  With or without the language.  I know, maybe better than anybody, that love is felt without the words.  He IS love.

Would it do either of us any good if I were to share with you that something is wrong with my son, and I don’t know what it is?

And that I don’t know how to fix him?

I guess what I should say is that he’s got some developmental and speech delays. That he’s adorable and my very favorite person in the world.  That he’s perfect.  Because he is.

My son is perfect as he is. Developmental Delays and All. Finding Ninee

PS – What I did, actually say is that he’s great and has some “issues” and that if she wants to know more, she should come here.  She did and private messaged me super awesome stuff which I’m waiting on her permission to share.  She rocked it.

PPS – She said it was fine to share and her PM is below, in comments.


by Kristi Campbell

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  • Joy - In my case, the answer to this question is always who poses it. People I am not too much in contact with just hear from he “he is fine, thank you”. Some of those acquaintances do not even know that he is different. I do not explain it all to everybody. And I do not think that is necessary, either.
    People who know our story get a more precise answer, but I choose very carefully who is told our story and who isn’t.
    Hugs to you!
    Love, JoyDecember 6, 2012 – 3:27 pmReplyCancel

    • admin - Hugs to you, too, Joy! Thanks. It’s hard to know what to say sometimes, huh? I think part of my problem is that I don’t have any friends here who have either known me long enough to not care that my son is not typical, or they have typical kids and don’t know what to say when I share that mine isn’t. It makes it pretty lonely sometimes.December 6, 2012 – 9:27 pmReplyCancel

      • Joy - I know that feeling of loneliness. And my friends with their typical kids just do not understand my life. So, frankly speaking, I prefer somebody not saying anything at all before he or she throws some mindless phrases at me.
        And yes, sometimes it is hard to talk about it. But it gets better the older our kids get. That is a least how I feel about it.December 7, 2012 – 3:20 amReplyCancel

        • admin - Joy, you are awesome!December 7, 2012 – 9:33 amReplyCancel

  • admin - Ok. With Jaclene’s permission (cause that’s her name), as she is the one who inspired this blog last night, I am sharing her private message here. Because, she’s awesome. I’ve deleted some personal stuff about her from the intro.

    These are her words:
    Anyways enough about me and all my craziness I read your blog last night!! It was AWESOME!!!! When I say I was laughing my head off the whole night that is truly a understatement. My cat was going crazy all night cause I kept bursting out laughing and he absolutely hates any loud noises. I loved the story about how you thought Tucker was coming to give you a hug but he used you as a napkin lol, and the story about you guys all trying to sleep in the bed at your in laws lmao those pictures you drew were the Best!! Tucker sounds like a complete joy to be around! I’m not very familiar with Autism Spectrum I did a little bit of research on it last night after reading your blogs and even though there may be some challenges down the road that’s ok! You’ve given Tucker a great support system and you’ve got a wonderful sense of humor so even if there are some bumps you guys will be able to overcome them while still maintaining a optimistic attitude and a Smile …Tucker sounds like he’s a lot like you. That story about you guys driving in the car and Tucker giving you the wrong directions was so cute. He’s a happy little 3 yr old who loves airplanes and likes to wipe boogers on his mommyl!! He sounds like a WINNER to me !!
    I really did enjoy reading your blog so much you sound like such a great YOUNG!!!! Mom. I saw your blog about being a older mother youre not old!!! I have way tooooo many friends that had kids in college, before college, never even went to college and had kids and now everyday is a struggle for them. They’re always down at the WIC office or standing on line for foodstamps or public assistance for hours upon hours a day. They have it rough. Most of them are too young to even appreciate they joys of being a parent, theyre still trying to run to the club on Friday and Saturday nights. Trying to figure out who fathered their 2 yr old who fathered the 1yr old lol. I know a girl who is 28 and has 5 kids!!! She had her last baby on the sidewalk! I could tell you horror stories!! The point is I think its good that you waited to have children. You have more stability in your life once you’re older and more established in a career. Plus you can appreciate all the wonderful little things that Tucker does every day. Young parents might see it as annoying the first time your baby throws a remote control at your head but a older and wiser parent would probably see it as well great he’s really working those motor skills. Lol I’m far from a expert seeing as I don’t have any kids of my own yet but I just wanted you to know that you’re not old, and I applaud you for waiting to have children. You get a A in my book!!! lol, I’m gonna wait as well too. Hopefully one day I’ll have my life in order.
    Well I’m so sorry if I rambled on here. I haven’t talked to you in so long and so much has changed in both of our lives. I hope you keep writing your blog because I will certainly keep reading. I tried to subscribe but I think I pressed the wrong button, and then I downloaded the app on my phone but the app kept closing so to prevent me from throwing my iphone out the window I just pulled up your blog from you fb page. If theres a easier way to subscribe please let me know lol for the sake of my phone lol. I highly doubt my otterbox case is indestructible. I hope to hear from you soon take care!
    p.s sorry for all the grammar mistakes English was never my favorite subject!December 6, 2012 – 9:56 pmReplyCancel

  • Jennifer - F!!! How do u always make me cry?!? And Tucker is perfect. Thank you for sharing. You are awesome and I Love this blog and you!December 6, 2012 – 10:54 pmReplyCancel

    • admin - Aw, thanks Jennifer! I’m so glad you are here.December 6, 2012 – 10:58 pmReplyCancel

  • Stephanie @ Mommy, for real. - I really liked this post. Have I mentioned before that I am a music therapist and have spent over a decade working with kids who have a variety of developmental delays? It is NOT at all the same thing as raising a child with special needs, but I have watched many of my dear families struggle for answers, diagnoses, and try on different strategies to help them cope. I know that for people who are not a part of this “culture” it is hard to know what to say, or what questions to ask. I wish everyone who has ever wondered would read this well-articulated post.

    On another note, I won an award this week and I am passing it on to you! I will post something “official” (haha) on my blog this weekend…stay tuned! I will mention you are Twitter when I get it posted! You are awesome. 🙂December 7, 2012 – 9:45 amReplyCancel

    • Stephanie @ Mommy, for real. - mention you “on” Twitter. Need more coffee.December 7, 2012 – 9:45 amReplyCancel

    • admin - Stephanie, I didn’t know that you are a music therapist. That must be really rewarding. I’ve noticed Tucker dancing and “singing” along more and more often just recently and it makes me smile every time. Part of what I love about it is that he always looks to me and makes a connection. He wants me to dance and sing along, too, which is pure magic.

      And…an award? Really? How awesome are YOU!? Awesome. You. 🙂
      Thank you so much! I’m totally crazily excited!December 7, 2012 – 9:50 amReplyCancel

  • Kerri - I answer in the moment. If Boo is having a bad day, I say that she is not feeling well but I hope for a better tomorrow. If she is having a fantastic day, I brag. I also think of the context (i.e. Facebook). I actually share more on my blog than I do on FB because I worry that the ‘FB friends’ will be bored, pity me, or not see the beauty that is Boo.

    I think you handled it perfectly. A quick reply and then the offer to share more privately.

    PS–Found you via Love that Max and I am so glad I did 🙂December 7, 2012 – 3:37 pmReplyCancel

    • admin - Aw Kerri, I’m so glad you did, too. It’s so hard to know what to say! And I share nothing (well, almost) on my personal FB page but have a page for Finding Ninee, too. The problem with it is that most FB pages seem dedicated to kids who are really, really sick, so I don’t really fit there.

      I found you from Love that Max, too and am also super glad I did! I’ve already added you to my “blogs I like” pull-down. And Boo is adorable! Her hair – oy! Too gorgeous! 🙂December 7, 2012 – 8:34 pmReplyCancel

  • Clara-Leigh - BEAUTIFUL post, and I agree with you that it is a mixed bag when it comes with how to respond to those questions. Sometimes I swallow hard and press on with my chin up, but sometimes I let it fly and 30 minutes have passed before my friend on the other end of the phone line has a chance to speak a word.December 7, 2012 – 10:38 pmReplyCancel

    • admin - Clara-Leigh, thank you so much for commenting! I’m glad you have friends who will listen to you let it fly. It’s important to vent. Glad you found Finding Ninee! 🙂December 9, 2012 – 5:25 pmReplyCancel

      • admin - PS – I’m going to check out your pages soon as I get Tucker to sleep tonight! Thanks again!December 9, 2012 – 5:27 pmReplyCancel

  • Joy - Just recently I told a good friend some things about Sunny that she had not known yet… she said she did not know what to say and she looked at me with pity in her eyes, and immediately I was sorry that I had told her. :-/December 8, 2012 – 10:59 amReplyCancel

    • admin - Oh, Joy, that’s rough. Why does it have to be so hard for people to just be supportive?December 8, 2012 – 2:24 pmReplyCancel

      • Joy - I don’t know, Kristi. That encounter just made me sad. 🙁December 8, 2012 – 2:45 pmReplyCancel

        • admin - It makes me sad too. 🙁 ((HUGS))December 8, 2012 – 2:51 pmReplyCancel

          • Joy - You are so lovely! Those hugs felt good, thank you! xoxoDecember 8, 2012 – 3:05 pm

  • Courtney - WOW! What a powerful and wonderful post. You have it so right on here. I am teared up and speechless. You described our lives with your post. That is what it is like. Loving the kid, but frustrated too. It’s a blessed curse and I can’t think of any other way to describe it.December 8, 2012 – 8:59 pmReplyCancel

    • admin - Awww Courtney (which has always been a favorite name of mine, by the way), THANK YOU! I really struggled with this post, but I’m really glad I wrote it, now. Thanks! And you’re right. It is a blessed curse.December 8, 2012 – 10:26 pmReplyCancel

  • mdbc77 - unless the question is specifically about the delay issues, i just think people don’t need to hear about it. less is more, kind of.

    the one really great thing about DD is that it’s not an illness. it just is what it is and our kids will get where they are going when they get there. on their own time!December 9, 2012 – 8:13 amReplyCancel

    • Joy - You are right, it is not an illness. But that does not automatically mean that everything will surely fall into place some day. Developmental delay is also often used as a diagnosis when it is not sure yet how your child will develop. I see that the gap between my son and kids of his age is widening more and more instead of closing, so I don’t think anymore that he will catch up on all of it one day…December 9, 2012 – 10:59 amReplyCancel

      • mdbc77 - that has always been one of my biggest fear…what to do if/when the progress stops coming…December 9, 2012 – 11:16 amReplyCancel

        • admin - I think it’s all of our biggest fear that progress will stop coming. I try to focus on the progress that Tucker IS making and not be jealous of the typical kids that he’s just not like. It’s hard. Which is why I think it helps so much to have other moms in similar situations to talk (and sometimes cry and sometimes celebrate) with. Hugs to both of you!! <3December 9, 2012 – 11:46 amReplyCancel

          • Joy - His progress has actually never stopped and is still happening. It just obviously is too slow to close the gap. So what do I do? There is not much I can do other than embrace it.
            Hugs to you both, too!! xoxoDecember 9, 2012 – 12:43 pm

  • admin - Joy, that’s all any of us can do. And honestly, although I of course cannot know how far any of our little ones will progress, I do really believe that they will keep on learning new things forever. They’ve proven that they can learn and I think they’ll continue to do so. Where they will be in relation to their peers is something we can’t predict but the fact that they’re doing what they’re doing is SOMETHING to be very thankful for, I think! <3December 9, 2012 – 5:24 pmReplyCancel

  • Joell from Red Van Ramblings - Wow. This is a lovely post…and words that are so true for all of us moms of kids with special needs. Oh, how I have been there!! Exactly there. And, over the years (my son is 17 and graduating this year!! Woohoo!) what I have learned as it relates to sharing his diagnosis with people we meet is that people are on a “need to know basis”. And as my son has gotten older, that is fewer people. He has been known to tell people himself now, though that is rare. He understands the “need to know basis” thing now. And when he was a little boy, I learned to celebrate his successes…no matter how small or trivial they might seem to families with typically developing kids. My son, my firstborn, is one of the two greatest joys in my life–my daughter is the other. He is an amazing young man. And I would not change who he is for anything. Like your son, my son is perfect!! 🙂 May God bless you as you mother your sweet sunshine boy!! Glad to have found your blog! Thanks for visiting me today, as well! TALUDecember 11, 2012 – 4:00 pmReplyCancel

    • Joell from Red Van Ramblings - To clarify, fewer people need to know, because he has made such incredible progress!! He has grown and learned to manage his challenges in such an amazing way that there is no need to “explain” things as much anymore. 😉December 11, 2012 – 4:03 pmReplyCancel

      • admin - Joell, thank you so much for the kind words and for the encouragement that these little guys DO progress. Congratulations to you and your son about him soon graduating! The time goes by so quickly, doesn’t it?December 11, 2012 – 5:53 pmReplyCancel

      • Joy - That’s awesome! Yay for your son! 🙂December 12, 2012 – 2:36 amReplyCancel

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