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

What being a special needs mom feels like

Having a child with special needs feels much the same as it does not to, and yet, well…different.  Having a child with special needs feels like you won the lottery times infinity times a gajillion because, as every mom knows, having a baby introduces a level of love that we’d never have imagined.

Having a child with special needs also feels jealous, sad, and a little bit cheated.

It means that you have a baby – just like everybody else – and your moods and your boobs are elated and deflated.  You’re overwhelmed and in awe.  Just like every new mother.  It also means that at some point, you realize that your child is different.

And because of that, so are you.

Having a child with special needs means that you’ll spend too much time pretending.  Hoping. Hoping that everything’s fine.  That he’s “normal.”  You’ll talk about delays, and feel relieved when family and friends tell you not to worry about them.  You’ll want so badly to believe that each baby develops at his own rate that you’ll try.  You’ll try to believe.  And you’ll worry that something’s wrong.

You’ll have friends with children who are mere weeks apart from yours when it comes to biological age.  When they’re tiny, you won’t see a lot of differences.  You’ll try to not focus on the small things and on the milestones.  Your friends’ kids will get older, as will yours.  And, all of a sudden, you’ll see more and more.  You’ll notice differences.  You’ll see your friends pretending not to see them.  Reassuring you, that your son “will catch up,” meaning well and trying to say the right thing.  You’ll want to believe them.

People will tell you that boys speak later than girls do. They’ll remind you that Einstein didn’t speak until the age of four.

You’ll experience extreme guilt, wondering whether this is your fault. Maybe he’d have been better off in daycare, with other children, rather than with you, at home. You’ll wonder whether it was something you ate, while pregnant or nursing. Whether you should have been playing Bach to him rather than listening to your own selfish music each day in the car.

You may waver between devouring every developmental milestone checklist that you’re able to find and pounding the delete key on your laptop when one of the new baby emails enters your inbox with the subject line of “He’s 18 months and is saying these words now!

At some point, the lack of language brings you to professional evaluations. You may hear the words “autism” and “delay” and refrain from falling to your knees in a doctor’s office because your son is watching you.

You’ll realize that not only have you been reading the wrong parenting books, but that you’re in the wrong library.

You’ll think about the child you might have had. You’ll grieve for him, and feel awful for it.

When you have your first-born at the age of 40, you’ve had a lot of quiet, dark nights in which you’ve wondered about the “what ifs” of your future child.  You’ve had time to secretly smile hopefully to yourself, knowing that surely your son will have an imagination rivaled only by Calvin – of Calvin and Hobbs – himself.

You’ll have met and fallen in love with your friend’s children. Your nieces, and nephews. There will have been a decade of moments marveling at the precociousness and hilarity of young children and their incessant chatter.

At some point, you may shed bitter-hot tears over the fact that you miss this little person who was almost-fully formed, if only in your dreams.

One day, you’ll realize that you’re rarely grieving for that might-have-been son any longer. You’ll forgive yourself and know that it’s okay to grieve the child that you’d imagined raising. That little boy that you can almost-maybe-see, sometimes…

You’ll reach a point where you want to come out to friends and family because you’re lonely.  And so you do.  They say they’re okay with it, but they don’t really get it.  A part of you doesn’t want them to get it because you don’t want their pity.  More than anything else, you don’t want pity.  But you also understand that it’s hard for them not to offer a bit of pity when it’s a situation that actually warrants some.

In searching for answers, you look at your cards and realize that others are dealt a much more difficult hand.  That some hands involve birthing babies fighting for their lives, who die, who were “incompatible with life,” and you feel blessed.

Because you are.

You are blessed.  Every mother is.  Every parent is.

On the flip side, one day, you’ll get on Facebook and see somebody complain that her two-year-old called her fat.  You’ll feel jealous as hell that her two-year old knows what fat is, because your four year old thinks you’re perfect.  Fat and all.

And then, you’ll realize that maybe you’re the lucky one.  That having a two-year old call you fat makes for some funny blog material, but that having a four-year-old who still thinks you’re the best person in the history of time is pretty perfect.

You’ll see that although his language sucks compared to his peers, when you say “You’re my favorite person in the whole wide world!” and he pushes your face away with a silly grin, that in his heart, he’s saying, “I know, Mommy.  And you are mine.”

You’ll see love that’s bigger than you are.

Life will be different than you imagined.

You’ll see that it’s going to be just fine.

TuckieFeb2013


  • Janine Huldie - Kristi, this post was absolutely beautiful and your son is adorable. You are a mother through and through and no one can ever deny that or take that away from you. Thank you for sharing your inner most feelings on this here and you are truly an inspiration!! 🙂February 26, 2013 – 9:32 pmReplyCancel

    • admin - Awww, Janine! *SOB* thank you. You know how when you post something, and you just feel funky about it? That was this. Thanks huge.February 26, 2013 – 9:47 pmReplyCancel

  • Angie - You could have not said that more perfectly, and I thank you for that! hat is exactly how it feels and is.February 26, 2013 – 9:39 pmReplyCancel

    • admin - Thanks Angie! It is…although I feel guilty sometimes because I know so many others have it so much worse…February 26, 2013 – 9:48 pmReplyCancel

  • Linda Atwell - Out One Ear - Yes, parenting a special needs child has a roller coaster of emotions. My son was typical–even above typical, while Lindsey was developmentally delayed. I can’t say that I always enjoyed the demands she put on our family. Sometimes I resented them and then felt guilty. My son was easy to love. My daughter wasn’t always so easy to love. (Many parents of children with special needs don’t seem to suffer from this–their special child is a constant joy. I always wonder how that is possible since my experience isn’t that way.) So more guilt. We all have to find our own way toward acceptance and you seem so much further ahead than I am (and my daughter is 32. Sad huh?) Although I do have more and more accepting days, moments. I guess part of my struggle in all this is Lindsey does know that she is different and she fights me on almost every single suggestion, statement because she wants to do things her peers are doing and sometimes that really isn’t possible. And her reasoning skills are low so it takes forever to convince her of ANYTHING! I love your writing and want to thank you for this post. You find exactly the right words to not make me feel alone.

    P.S. BTW, Kristi–I was on vacation in Mexico for two weeks and didn’t have easy access to anything. I hope I didn’t miss out on more of your amazing posts! I’m in the process of writing about the Valentine Project–but it sure looks like they received over 500 messages of love and support–thanks to your help. And the newlyweds are giddy. This is one of the times I adore being a special needs mom. It takes so little to make them happy.February 26, 2013 – 9:41 pmReplyCancel

    • Linda Atwell - Out One Ear - P.S. Your son is adorable!February 26, 2013 – 9:42 pmReplyCancel

    • admin - First, I’m SO glad to hear that you’ve been away in Mexico (jealous but happy for you). Thanks huge for the comment.
      Second, I think that it’s easier to find constant joy (and trust me, it’s NOT constant, sometimes I’m so damn frustrated that I’d hit a wall if I weren’t scared for my hand) when the kiddo is THREE. He will get older, and that’s when I’m even more worried about. Tucker’s not always easy. If you read some of “the story” section, you can read about the guilt I have to this day when I actually asked him “what’s wrong with you?” after trying to have fun in a soccer class. I could go on and on….
      Third, YAY that Lindsey and Nick were so overwhelmed with Valentines! Did they get to see the one that I drew for them? I hope they loved it. My hope was that they’d be excited for the custom piece of it, but maybe opening actual packages was cooler. And awesome job to you getting all those media outlets to share your story. So COOL. <3
      You rock. And by the way, you totally shot past me in the Top Mommy Blogs - you're now number 2! I'm not jealous (well, maybe a little) because I voted a lot! You deserve it 🙂February 26, 2013 – 9:55 pmReplyCancel

  • Emily - I loved this for so many reasons…it’s so true, it’s so real, and it’s beautifully said. I’m sure you’ve read the short story, “Welcome To Holland” but if not, I’ll paste a link to it here. You just described Holland to your readers, but in an eloquent, touching way. Here’s the link: http://www.our-kids.org/Archives/Holland.html
    And, if you ever want to talk, chat, text, email, blog, etc. to another mom whose traveled to Holland, I’m here! xoFebruary 26, 2013 – 9:46 pmReplyCancel

    • admin - Emily! So glad you’re back. Stephanie was recently away, too…not fair. You guys should stagger your vacas.
      I did read “Welcome to Holland” and WOW. So awesome. And I’d love to chat, talk, text, etc. to you. HUGE. I’m going to be out of town this weekend (read I didn’t read my own memo above and stagger it wisely with my bloggie buds), but would really appreciate that. Remind me which of the boys took you to Holland? I forget sometimes, as well, my brain is swiss cheese. Or a colander. Or just old.February 26, 2013 – 10:00 pmReplyCancel

      • Emily - Big Dude (15) is my Holland traveler…and good for you on getting away this weekend! I’ll have my butt planted in the bleachers at various basketball playoff games – yippee.February 26, 2013 – 11:21 pmReplyCancel

        • admin - I’d actually love to hear more about big dude’s travels. And yeah, I’m psyched for this weekend, but not so much that hubby has taken over for me this week with work and will now again, for travel (not bringing them ouch).
          thanks HUGE <3February 26, 2013 – 11:29 pmReplyCancel

  • Maggie Amada - Your little boy is handsome and seems happy. From what I’ve seen of almost-autism, children may have difficulty with social communication and they have trouble interpreting some things, but that doesn’t mean they don’t understand a lot. They see the world a little differently. He’s lucky to have a mom like you and he’s smart enough to recognize it.February 26, 2013 – 9:48 pmReplyCancel

    • admin - Thanks, Maggie. He understands a ton (more than we realize sometimes) but he definitely sees the world and speaks to the world differently. Thanks for the sweet comment.February 26, 2013 – 10:01 pmReplyCancel

  • Dani Ryan - Oh my. You have a way with words, my friend. This is an absolutely beautiful post. And that boy! He’s gorgeous!

    I won’t pretend to know how you feel. I bet it’s extremely frustrating when people do that. But I will cheer for you from the sidelines, because I know that you will figure this all out, and do the best thing you can for your son. You’re a mom. It comes with the territory.

    My older sister has spina bifida, and I imagine that was very difficult on my parents. Still is. But her disability became our normal. I must’ve been 18-years-old before I thought to tell people my sister was disabled before they met her. Not because I was embarrassed by it. Because I didn’t think about it. She’s just my sister, and all the quirks that come with her disability are what make me love her.

    My Mum and I have talked about what could have been had she not been born disabled, but then we realize that she wouldn’t be who she is and we wouldn’t be who we are. It would change the dynamic completely. We probably wouldn’t have been as close a family.

    Anyway, I guess what I’m trying to say is, while you might feel different and like you don’t fit in, that stuff doesn’t matter. That little boy is all that matters. And you’re doing an awesome job.

    Big cyber hugs to you, my friend!

    xoFebruary 26, 2013 – 9:49 pmReplyCancel

    • admin - Thanks so much, Dani! That’s awesome that you didn’t realize your friends might need to have notice until you were 18 or so. Actually, completely awesome.
      And you’re right. That little boy IS all that matters. Thanks again and big cyber hugs back…February 26, 2013 – 10:04 pmReplyCancel

  • Josie Bisett - Hi my friend! You are a nightly tonic: some nights you are funny as shit, others your thoughts are raw and heartfelt. But always a joy to read! As I’ve said before I like the mix, I like personal blogs – and you do personal, and you do it really well 🙂February 26, 2013 – 9:52 pmReplyCancel

    • admin - Aw Josie! YOU are the nightly tonic. Me? I just whine and then draw some dumbass pics (which I’ve got an awesome idea for yours but it’ll likely be next week, crazy week this one).
      Thanks HUGE for the comment. <3February 26, 2013 – 10:05 pmReplyCancel

  • Tracy @ Momaical - I taught several autistic children over my years of teaching. A few of them were my absolute favorite students because they challenged me to rethink my teaching methods and find that “thing” that makes them tick. Soon, your gorgeous son will come into his own and he will amaze you with how he views the world. Because it truly is a gift.February 26, 2013 – 9:56 pmReplyCancel

    • admin - Tracy, thanks so much. I didn’t realize that you’d taught autistic children before. I’d love to hear what you found makes them “tick.” Tucker’s in ABA therapy now which I think is working but because he’s not fitting the typical autistic mold, there are some concerns. Thanks huge for the comment.February 26, 2013 – 10:07 pmReplyCancel

  • Tom Cahill - It’s a marvel to read of your child and your life with him. The depth of your self knowledge and contemplation of such a human conundrum, mother to special needs child for the world to better understand your/their reaction to what you are living real time is a window to a world unknown to me and many others either being childless and/or not having a child with special needs. We outsider humans are awkward beings grappling with our own selfish lives typically, most times, pathetic really upon reflection, merely pleasure seeking, comfort seeking, steering clear of all uncomfortable realities. I thank you for giving this human a moment to just pause and wonder, my feelings are not of pity, but a more basic empathy that you allow me to feel based on you sharing your life. Thank you.February 26, 2013 – 10:05 pmReplyCancel

    • admin - TOM! Thanks for making me bawl, by the way. Wow, thank you so much for acknowledging what we live realtime. Seriously. I am constantly striving to find the balance between funny and awareness, and appreciate so much that one of my old Genesys pals visited Finding Ninee…and took the time to leave such a heartfelt comment.
      And by the way, I’m still very much pleasure seeking, comfort seeking, etc.
      <3February 26, 2013 – 10:17 pmReplyCancel

  • Rich Rumple - Okay, you know I’m the jokester. Let me play it serious for a change. This was more than just an insider’s view. It was a testament as to your love, efforts, and devotion to a beautiful child. Really a beautiful piece straight from the heart. You’ve earned my respect here. I wouldn’t joke about this if I could. I know I say it often, but really, this time, Great Job!February 26, 2013 – 10:42 pmReplyCancel

    • admin - Aw, Rich, I have faith that you COULD joke about this but very much appreciate that you didn’t, here…thanks, huge. Huge. I’m crying reading all of these responses and don’t know that I have the blonde brain power (an oxymoron – I was the one who got to make a joke) to to reply with any wisdom…but thank you. thank you.February 26, 2013 – 11:09 pmReplyCancel

  • Stephanie @ Mommy, for real. - To answer your question, this is NOT crap. It is beautiful. I know I have said this before, but I’ll say it again. I do not have a child with special needs, but as a music therapist I spent many years of my career working with kids whose needs varied from complete immobility and being nonverbal to just needing some help with articulation and social interaction. The kids I worked with will always be in my heart- I will probably remember their names and faces forever. They are some of the most precious and incredible kids I have ever met. And often I was able to witness their parents’ emotional experiences as well- ranging from pride in their accomplishments to frustration to grief. I think it is amazing that you have the words and insights to express this so vividly. Thanks again for showing us your beautiful versatility and honesty. xoxoFebruary 26, 2013 – 10:54 pmReplyCancel

    • admin - Stephanie! I’m so overly-emotional right now…not sure if it’s because little dude Tucker is sick, and I have huge mommy guilt for having to work today and dad came home, or because I truly thought this post was less than…but thank you. thank you thank you.
      You still do music therapy right? You know, my biological aunt used to do music therapy in Colorado…mabye you guys should meet…
      Thank you for saying this. It means TONS. I can PM you the rest of my slobbery loves but thanks. For real.February 26, 2013 – 11:14 pmReplyCancel

      • Stephanie @ Mommy, for real. - Seriously? I am dying to know who she is now, and when she practiced in CO! That is so awesome… and, yes, I still practice! 🙂February 28, 2013 – 5:49 pmReplyCancel

  • Jen - Thanks so much for the beautiful post Kristi! I have struggled with my son too, sometimes it doesn’t help that they look “typical” on the outside. I have found that people have unrealistic expectations of him sometimes when they view him that way. I also know the pain of spending the money you don’t have in the hopes that “this” therapy will make a difference. But you know who’s making the biggest difference? You! You are being your child’s strongest and loudest advocate, and that’s what he needs. Our boys will always know they are loved and always know that their mama’s did everything for them, gave them every advantage and loved them more than the world. Thank you for sharing this!February 26, 2013 – 11:02 pmReplyCancel

    • admin - Jen,
      So true that moms are the best as far as making a difference for out little men. Thanks for the awesome comment. And you’re so right about it not being obvious right away (for mine it’s until he talks, usually) that they’re not typical. Hugs!February 27, 2013 – 9:19 amReplyCancel

  • K - Beautiful, beautiful post. Made me cry. Thank you for your words.February 26, 2013 – 11:41 pmReplyCancel

    • admin - <3 Thanks so much for the comment.February 27, 2013 – 9:19 amReplyCancel

  • The girlfriends mom ;) - Hoping you know who this is.. assuming baby girl is still the current girlfriend even though we missed our annual Vday festivities. I’m not proud to say this but as someone who has faithfully read every post here from day one i have never commented for fear of sounding stupid. This post pushed me to face my fears, mostly cause the message is personal.

    You are right bout friends pretending its fine cause they dont want to see it.. this is partly because most times it IS fine when we see Tucker run, chase, laugh, play and hug bg it is more than fine it seems perfect but this is also partly because we are right there with you going through the denial and mourning sometimes coupled with guilt but never with pity. We look at Tucker through babygirl’s eyes – to her he will always be her first and forever friend who is shy sometimes but always a joy to hangout with.

    Sorry if i’ve been rambling, its almost midnight – That’s my excuse but bottom line is we love our Tuck Tuck to bits and his very special mom too 🙂 Hope you never feel like you are alone in this, please remember I’m just a text / phone call / short drive away!! xoxoFebruary 27, 2013 – 12:02 amReplyCancel

    • admin - HOLY COW beautiful friend…how could I not know who this is? I’m honored and humbled and grateful that my sweet BB has sweet BG to love him….and better than that, her sweet mommy to adore him no matter what. I’m not going to do this reply justice because I’m emotional about it all right now…thank you HUGE as you have been the biggest awesome mom ever with all of this…our babies met before I ever had a clue about Tucker being different.

      And just, WOW. What an amazing perspective that I’m so thankful for. Really.

      And he does “get” Sonja…we’ve had our Valentine’s present here forever and he keeps saying “present” knowing it’s not his. 🙂

      <3 times a million...February 27, 2013 – 12:16 amReplyCancel

  • HiD - Great post! I applaud you for being able to post about situations as you are in the midst. I think you said what many would like to say or have tried to say! Some of your points really hit close to home. Great workFebruary 27, 2013 – 12:58 amReplyCancel

    • admin - Aww, thanks HiD! <3February 27, 2013 – 7:23 amReplyCancel

  • Terrye - Beautiful. I’ve felt every one of those emotions ten fold, especially after the diagnosis. And I agree, in the end, I feel like I’m the lucky one because my son is special. 🙂February 27, 2013 – 7:33 amReplyCancel

    • admin - We are the lucky ones. Still, it’s hard…February 27, 2013 – 10:36 pmReplyCancel

      • Terrye - The best things in life are earned. 😉February 27, 2013 – 10:46 pmReplyCancel

  • Daphne - Tears. Thanks for sharing the tenderest of places in your heart.February 27, 2013 – 8:43 amReplyCancel

    • admin - Hard to share. Thanks for the validation 🙂February 27, 2013 – 10:14 pmReplyCancel

  • Kerri - What in the world made you think this was crap? You said it perfectly. Being a special needs mom does feel different. You have Tuck. I have Allie to compare it to, and I feel differently between the two of them. I had 5 years of being a ‘typical’ mom. And let me tell you, being a ‘typical’ mom was so much easier. But not as rewarding. I think you said it perfectly.

    Hugs to you today, because obviously you were struggling. I am glad you put your struggle into words.

    Of course, I miss your drawings (I have an idea of the 2 1/2 year old calling their mom fat).February 27, 2013 – 8:46 amReplyCancel

    • admin - Kerri!
      I’m not sure if I thought it was much crap as that I don’t really feel comfortable sharing stuff about Tucker’s delays…maybe I still hope they’re not as obvious to others as they are to me (which is dumb, because they SO are)….
      Huge hugs <3 and thanks. I guess it's dumb but this one was really hard for me to post. Maybe it's my own denial. I still keep my FB page and personal page pretty separate....maybe it's time not to...February 27, 2013 – 10:18 pmReplyCancel

      • Kerri - Oh, I am totally for keeping it seperate. Otherwise how can you vent? You would get a call/text/e-mail with some one ticked off because they would be sure that you were talking about them or they would complain about you outing them with a New Orleans Stripper. I think blog and facebook are like inlaws. Nice to have but it is better to not have them both over for Christmas dinner.February 28, 2013 – 8:49 amReplyCancel

        • admin - Ha ha to the inlays being nice to have but not both over for Christmas dinner! Thanks for the awesome chuckle.February 28, 2013 – 9:33 amReplyCancel

  • Annie - This was a lovely piece. Such good insight and well written. I especially liked the section about pity…bc pity and empathy are such different emotions. I think this will resonate with more people than you think.February 27, 2013 – 10:51 amReplyCancel

    • admin - Annie, wise one, you’re right. Pity and empathy are SO different. But sometimes hard to separate as the recipient. <3February 27, 2013 – 10:19 pmReplyCancel

  • Cait Beauchaine - So beautiful and so honest. I love it – I think it’s brave of you to share those emotions. I can’t imagine how challenging it must be, but you seem like you are an amazing mother who has a great handle on things.February 27, 2013 – 2:06 pmReplyCancel

    • admin - Can’t say thank you enough. But, I will again. thanks, huge, Cait. Huge.February 27, 2013 – 10:19 pmReplyCancel

  • Jennifer Atlas - Kristi…wow. Beautiful.February 27, 2013 – 5:51 pmReplyCancel

    • admin - Wow, all these friends commenting for the first time. <3
      Thank YOU. Huge.February 27, 2013 – 10:31 pmReplyCancel

  • [email protected] G is silent - As the auntie of a special needs 8-year-old, you nailed it. Austin is amazing and wonderful and brilliant. He reads and does math better than his brother or cousin did at his age. He makes baskets during basketball. He falls a lot. He has quirks. He’s difficult. Seeing him alone you wouldn’t know he was ‘different.’ Put him with another 8-year-old and you’d get it. I believe he makes us love harder, not just him but my son and Austin’s brother, because we see them respond to and protect and fight with and treat normally this wonderful kid. We are so lucky to have him.February 27, 2013 – 9:38 pmReplyCancel

    • admin - Aw, Kim! Love the “he makes us love harder” part. So true. So true. thanks gigantic for commenting.February 27, 2013 – 10:32 pmReplyCancel

  • Mama Meerkat - This is a lovely and beautiful post. <3February 27, 2013 – 10:28 pmReplyCancel

    • admin - <3 <3 <3March 6, 2013 – 10:31 amReplyCancel

  • Rachel - Kristi, you have me in tears. Such a powerful post. I love the lines about faith. You are right to have faith, because it all will be fine. I’m not saying that to diminish what you are going through either. I may not be a special needs mom, but I have taught enough children with disabilities to know that it will be fine.February 27, 2013 – 10:48 pmReplyCancel

    • admin - Rachel…THANK you. I have to have faith. Without it, life is bleak, yes? And thanks, so much, for the reminder that all WILL be fine…February 27, 2013 – 10:54 pmReplyCancel

  • mombo - you’re such a wonderful writer – so many emotions went through my soul while reading this post. Bless you, and bless your beautiful son xoxoxoFebruary 27, 2013 – 11:46 pmReplyCancel

    • admin - XOXOXO thanks huge!! <3March 6, 2013 – 10:31 amReplyCancel

  • wendy - Beautiful… 🙂February 28, 2013 – 9:19 amReplyCancel

    • admin - Blushing, now…March 6, 2013 – 10:31 amReplyCancel

  • nothingbythebook - <3February 28, 2013 – 10:05 amReplyCancel

    • admin - Back at ya.March 6, 2013 – 10:31 amReplyCancel

  • Cyndi - Very powerful post. Thanks for sharing your story and it’s amazing. I have a special needs brother who still lives with my parents and I know it’s a tough road and you love them no matter what and the guilt and the emotions and above all, there is love, there is always love. I hope you have a wonderful day!February 28, 2013 – 10:19 amReplyCancel

    • admin - Thanks Cyndi! And you’re so right. Above all, there is always so much love.February 28, 2013 – 7:14 pmReplyCancel

  • Andy - What a deeply personal and intense look at something many parents never experience first-hand. Thanks for sharing your thoughts and tribulations. I know posts like this are so helpful to so many parents out there.February 28, 2013 – 11:26 amReplyCancel

    • admin - Aw, thanks Andy. I hope it makes somebody feel less alone, if nothing else.February 28, 2013 – 7:14 pmReplyCancel

  • Menopausal Mother - This is so incredibly, beautifully written—one of the most poignant blog posts I have ever read. Made me teary- eyed!!! Now I feel a little silly making such a big deal about what I want to post tomorrow. Please don’t think less of me if you do read it sometime. You know what? I think your son is so very lucky to have you–I can tell from the love in your words that you are the best mother he could ever have. I would love to see you submit this to Huff Post or some other big name online magazine–I think you will touch a LOT of hearts and help other parents going through it! XOXOFebruary 28, 2013 – 11:59 pmReplyCancel

    • admin - Aw, you’re so sweet! Thanks so much for the awesome comment and encouragement. <3 And I will definitely read your post today - I can't wait!March 1, 2013 – 6:13 amReplyCancel

  • Eloise Southard - Just a note that I understand this wild ride of emotions completely and it’s very reassuring to read your blog and see so much of myself in your words. Wishing y’all all the best.
    Eloise
    http://thesoutharddiaries.tumblr.com/March 1, 2013 – 4:19 pmReplyCancel

    • admin - Hi Eloise,
      Thanks for the comment! I visited your post and congratulations on your sweet daughter’s hearing loss being less than they’d originally thought! Mommy’s gut instincts are good. I wasn’t able to comment there…am I missing something?March 1, 2013 – 6:10 pmReplyCancel

  • [email protected] - This is so true!March 6, 2013 – 10:23 amReplyCancel

    • admin - Thanks, Misty! 🙂March 6, 2013 – 10:32 amReplyCancel

  • Dawn Beronilla - How did I miss this?!?!
    It was beautiful and perfect!
    I especially hear you on the mourning. When Xander had his major regression I mourned for weeks. I wept over the loss of a child that I had raised for two years, and who was replaced with a stranger. A child who did not know or respond to me, a violent child who screamed non-stop; a child who shared nothing in common with the Xan I had raised. It was an absolute nightmare.
    It took me many months to realize that mourning the loss of your hopes and dreams is a very real grief.

    I should say that like many aspects of raising a special needs child, it gets better. It gets easier, And at this point I know my son in and out, every obsession and aversion, every habit and every stim. And I love him.
    So much.

    Thanks for writing this piece.March 11, 2013 – 1:04 pmReplyCancel

    • admin - Thanks so much for the great comment, Dawn! I think a lot of moms feel guilty about mourning for the loss of the child they thought they’d have because we still are able to hold them, see them, hear them. But the loss is still real.
      You’re such a great mom to Xander, and I love the post you wrote about your doctor’s appointments and evaluations. So heartfelt and so real.
      So thank YOU.March 11, 2013 – 4:42 pmReplyCancel

  • Kenya G. Johnson - Kristi that was beautiful. My nose is burning! You know that feeling where you say, your not going to cry right now and the tear ducts say – okay we’ll hang out right here. ~TALUMarch 13, 2013 – 6:42 amReplyCancel

    • admin - Thanks so much Kenya! And yeah, I totally know that feeling…March 13, 2013 – 9:34 amReplyCancel

  • [email protected] - how did i never comment on this? you said it like you were reading it right out of my heart. “normal” brings with it a whole set of issues we may never have to deal with, and i’m releived. it breaks my heart that things will be more difficult for my patty, but i wouldn’t change that kind, loving kid for anything!March 20, 2013 – 8:23 amReplyCancel

    • admin - Misty,
      Agree, 100% that “normal” brings a set of issues we may never have to deal with. And our kids are perfect, already. Just the way they are. \<3March 20, 2013 – 9:34 amReplyCancel

  • Amy - I found your blog while researching “speech delay” online and felt the need to comment. Thank you so much for pouring out your heart and soul into this blog. I have a 3 year old son who is expressively and receptively delayed. He used to exhibit some signs of autism when he was younger, but we’ve noticed that a lot of those autistic-like behaviors started diminishing as his speech progressed. At 24 months he never answered to his name, didn’t point, had poor eye contact and had only around 10 words. Now, he’s 35 months and he answers to his name, points all the time, maintains decent eye contact (could be better) and says 2 word phrases all day long. He is still delayed but we’ve seen HUGE progress in the last 4-5 months. We just had our school district evaluation last week so we are awaiting the results. We had one evaluation done with a psychologist who did not think he was autistic. But I can’t help but sometimes think “Maybe she was wrong?”. His receptive skills are not where they should be. He seems to repeat everything we say (which is great for encouraging talking) but he’s not understanding much of what he is repeating.

    Anyhow, sorry for the ramble. I’m just happy to have found another mom with a special needs child who KNOWS what it feels like to live with the guilt but also joy of raising a “quirky” kid. Please continue posting! 🙂March 22, 2013 – 3:16 pmReplyCancel

    • admin - Hi Amy,
      Welcome!
      I’m so glad you found Finding Ninee! And I’m relieved for you that your son is using so many more words and that he’s made such huge progress. Regarding the psychological evaluations and developmental pediatrician evaluations, one thing that I now believe, based purely on my own surmises that have zero science behind them, is that different doctors tend to diagnose differently. Some seem to go ahead and give an autism diagnosis if there’s a chance that it’s spectrum-ish, and others tend to hold off. And one of the things I am trying to remember is that having a diagnosis or not doesn’t really matter much. That as long as our little dudes are getting the services that they need, we’re okay.
      I don’t think that will always be the case and plan to get Tucker further testing when he’s a little older. Oh and also, out of all the ones we’ve had, the school’s has been the best and most important so far, because that’s the one that determines where he’s placed. And I’m happy with his placement in the preschool autism classroom. Of course, if they decide to switch him and I don’t agree, I’ll be all over trying to get a real autism diagnosis! 😀

      I wish I knew more for all of us honestly. And thanks so much for sharing your story! And for the great comment. And for the visit. Hope to see more of you here.March 22, 2013 – 5:08 pmReplyCancel

    • [email protected] - have you enrolled your son in private speech therapy? we waited longer than we should to find a therapist that fit well with our daughter, but once we got her started w/ speech we started seeing a lot more improvements, too!March 23, 2013 – 10:11 amReplyCancel

      • admin - No. We were going to but his teacher convinced us that we should wait for him to have more words before correcting the pronunciation of the ones he has. Good in theory but I’ve been thinking it’s time to step up the therapy. He had private speech therapy before entering school, and I think it helped. My next step is that I need to get a more thorough evaluation. So we’re working now to get a neuro-psych eval and also a private speech eval. I want an apraxia expert to see him. Because as time goes on, I’m more convinced that he has it. Thanks huge. You’re awesome.March 23, 2013 – 10:17 amReplyCancel

  • Diane - Kristi, you have a true gift with words. As a mother of a 12 year old special needs child (she is non verbal, and has extreme developmental delays) it is soooooooooo comforting to experience this connection with you and to have a glimpse as I read about the reality of your journey.
    Your son is very sweet!
    Thank you for sharing and making my day!March 25, 2013 – 10:26 pmReplyCancel

    • admin - Hi Diane, thank you. Welcome here. Where I should talk about special needs more but find myself unable to. So often. I wish I knew who you are. But thanks for landing here. And if you ever want to talk, please know that you can…to me…March 25, 2013 – 10:47 pmReplyCancel

      • Diane - Hi Kristi, thank you for your reply. It is wonderful to know where I can reach you and I will check in with you from time to time, thank-you so much. It’s good to make a connection with someone else who gets it and understands the mixed emotions and the challenges we face everyday with our kids.
        I realize some people have more to deal with than others and either way these kids are truly amazing and they seem to bring out the best in most lives they touch, how we can learn from them! The best to you, I’ll be in touch……….March 26, 2013 – 8:38 amReplyCancel

  • [email protected] - Yes! All of it. It is a special and terrifying and wonderful and rewarding and stressful and soul-wrenching job, but at the end of the day, it’s beautifully difficult.April 9, 2013 – 6:24 pmReplyCancel

    • admin - Laura, it IS beautifully difficult. Well said. And thanks for the comment.April 9, 2013 – 6:40 pmReplyCancel

  • Roshni - This is such a heartfelt post. I gladly voted for it and I do hope you win!April 9, 2013 – 7:20 pmReplyCancel

    • admin - Thank you, Roshni! I voted for yours as well and you should win!April 9, 2013 – 7:34 pmReplyCancel

  • The Sadder But Wiser Girl - Love.This. XO!April 10, 2013 – 8:39 amReplyCancel

    • admin - XO back at ya!April 10, 2013 – 9:34 amReplyCancel

  • Whacamole Mom - Chills! I love this. Such an important, heartfelt post for parents entering our world of special needs.

    I finally made it over here, and can read only in spurts – but I am returning for sure. So glad we have connected!April 11, 2013 – 3:26 pmReplyCancel

    • admin - Thank you so much, Whacamole Mom! I’m honored to have you here. Huge. Glad we connected as well!April 11, 2013 – 5:27 pmReplyCancel

  • MJM - That is truly a beautiful story…you and your son are lucky to have each other. The love is strong in your family…and it shows in your writing. Thanks for sharing a piece of yourself with us.April 14, 2013 – 2:51 pmReplyCancel

  • K - I read this a while ago and it made me cry. I just read it again now, and here I am, sobbing into my computer and hoping my roommate doesn’t come into the room because there would be a lot of confused questions! Wonderful post, thank you.April 17, 2013 – 4:48 pmReplyCancel

    • Kristi - While I’m sorry I made you cry, I hope it was the kind of tears that are good because you know that there is so many people out there who want the world to understand that not only are we all unique, we are all different and our uniqueness matters so much more on the inside.
      PS I hope your roommate didn’t come home.
      PPS You are awesome.April 17, 2013 – 10:11 pmReplyCancel

  • MyTwice BakedPotato - He is a beautiful boy! Blessings to you and yours!April 24, 2013 – 3:50 amReplyCancel

  • jessica sheets - I just read this and wow, I feel like if I had a cleaner mouth, this would have rolled out of it. Thanks for this. It’s beautiful and really makes my nights to read it sometimes. April 25, 2013 – 4:49 amReplyCancel

  • Wendy Widom - Beautiful.April 26, 2013 – 3:17 pmReplyCancel

    • Kristi - Thank you Wendy! Honored you saw it 🙂April 26, 2013 – 4:35 pmReplyCancel

  • Bellamama - Dear Kristi, this week was one of those mourning weeks for me, and you described so perfectly the way I feel, have been feeling for six years. I found your blog because I was looking for someone that had a special kid in the middle like mine – very hard to find actually. She is not autistic either, even though we take that diagnosis so we can get some insurance coverage. She is different. She is adorable, loving, passionate, happy, a joy! But – of course there’s a but – she doesn’t speak, very few words. She makes her point without talking, but we also have been trained to understand her. There are some other problems too, cognitively. The thing about this week is that I realize I cannot keep her on a normal Montessori school for much longer. She is not catching up. She is still different. And what you wrote about we and everybody else around wanting to believe it will all be OK, just give it time. I think the problem with not having a definite diagnosis is that we don’t know what exactly is that we need to look for. My daughter is amazingly special. She brings joy to everybody that meets her and is open to see that. Now I am searching for that special school that will help her, but it’s not easy. It’s been a hard week for me, but I know I’ll get over and go back to just feeling blessed and enjoying her love. Thank your for helping people like me not feeling so lonely. PS. It may be because English is not my first language, but I had never left a comment on a blog like this before. I think it’s about time I participate.April 27, 2013 – 11:22 pmReplyCancel

  • Kristi - Bellamama,

    First, your daughter sounds wonderful. Second, I’m so glad that you found Finding Ninee – having others to share our journey with has been a lifesaver for me. People who understand are so important and comforting and make the world so much less lonely. I’m very happy that you commented and your English sounds perfect (and even if it is not sometimes, that’s okay too – I promise).

    Regarding your daughter’s school – have you contacted your local Child Find (or equivalent if you don’t live in the US) office? Your daughter’s doctor should be able to help you get in touch with them. I dreamed of Montessori school for Tucker as well since that is what I attended as a child. Sadly the environment is too relaxed to help him grow – he needs more structure than they provide. We got very lucky with his school. After we went through Early Intervention (which is what you do before Child Find if the child is younger than three), we were referred to some teachers who provide ABA therapy in preschool. They came to our home and evaluated Tucker and then we had an IEP meeting to best set his goals for the year. They’ve been wonderful and Tucker has made a lot of progress since September.

    Perhaps if you found a program like that, your sweet little girl would make more progress? Let me know if I can help. Feel free to email me privately and I’ll even give you my phone number if you want to talk.

    I know how sad and lonely it can be all too well. I’m so very glad you reached out. Thank you.April 28, 2013 – 9:16 amReplyCancel

  • Gayla Keenan Timm - This is beautifully written and very well said. I’ve been right there with you…April 29, 2013 – 2:34 amReplyCancel

  • Anita @ Losing Austin - Just voted and think this is such a beautiful piece. We all have areas of life that are so different than what we expected, or would have chosen. But like you said, just because it’s different doesn’t mean it can’t be beautiful. <3April 30, 2013 – 3:35 pmReplyCancel

  • Kristi - Anita,
    Thank you so much. I suppose that everybody’s lives are completely unexpected. Maybe that’s how we learn to appreciate them more.April 30, 2013 – 9:31 pmReplyCancel

  • Sandra Sallin - Beautiful and so heart felt. Thank you.July 21, 2013 – 4:14 amReplyCancel

  • Deborah Ballard - I myself have raised a grandson who is special. Mental age of about 7 now but age he is now 20 years old. I will have him till I die and you know even if my life was changed when I took him to raise. I would not change a min of my life with him and I would do it again if needed. So god bless all you mothers with special needs kids. They rock and so do you allJuly 30, 2013 – 10:24 pmReplyCancel

  • Charm AndGlam - I cried.. A lot.. while reading this, Kristi.. I have 3 1/2 year old son and he’s not yet diagnosed of anything but speech delay. So he’s in therapy (occupational therapy) at the moment as the developmental pediatrician said that he needs to learn how to cooperate more and follow instructions before he can go to speech therapy. And you’re right about everything here. When it comes to that area, I just don’t know what to say. This is so beautiful. Thank you for sharing..August 31, 2013 – 2:28 pmReplyCancel

  • Out One Ear - Linda Atwell - It’s perfect Kristi. Like all your pieces. Everything you write is so correct-well, at least for the way I felt. You captured my journey perfectly! We were elated to be parents. We were saddened when we find out the child isn’t exactly as we planned. And we mourned. But life goes on and we love our children and we know everything will be ok. We hope it will be ok.

    One of the things I hated when Lindsey was little was when other mother’s said, oh, my kid does that. We both knew her kid didn’t do it to the extreme that Lindsey did it. It just wasn’t the frickin’ same, no matter how much she tried to say it was. I watched her reason with her kid when I was unable to reason with mine. I watched her kid recover quicker than Lindsey when they had meltdowns. And I watched her kid run off and play with someone else while my daughter stayed behind and played alone. Because that is what Lindsey wanted. (I wanted her to have friends. To be a friend.) It broke my heart every. single. time.

    Thanks for another amazing post. I love you.February 15, 2014 – 5:57 pmReplyCancel

  • Shay - Kristi, this was such a great post. I hung on every word. Thank you so much for sharing–and enlightening.February 15, 2014 – 8:40 pmReplyCancel

  • Lizzi Rogers - Freakin’ choking up all over again at this, at the privilege of reading your words, of having heard them spoken, and of knowing you, and all the wonder and joyfulness of learning to understand your world that this entails. <3 this one SO much. Almost as much as 'right now'.February 15, 2014 – 10:01 pmReplyCancel

  • Mike - Wow, this was absolutely amazing, Kristi!! I have loved getting to know you, Tucker and the beautiful journey both of you have been on. As I’ve told you, it’s been an immensely enlightening ongoing learning lesson for me to hear about the ups and downs that the two of you have daily. What I’ve taken out of it to this point is a mutual love that has no boundaries and a depth that most people can not fathom. Your continued optimism about all aspects of life inspire (yes, I use that word frequently with you and towards you) me and I draw on it daily! This was incredible, our friend. Many hugs!! 🙂February 16, 2014 – 11:57 amReplyCancel

  • Patricia Schooler - How heart braking this is. But u love. Ur child no matter wot is wrong with. Him. U. Do everything in ur power. To show him. How much he is loved.September 4, 2014 – 8:47 amReplyCancel

  • Kimberly Sue Milan El-Ayazra - My 6 year old son was diagnosed with autism at 20 months. Oh my, I can’t began to tell how much love I have for this child. I keep praying that one day he will come home from school all excited and tell me about his day. If that day comes or if it never does, he will always be my favorite lil guy!!! A poem a felt soothing right after his diagnosis was ” Welcome to Holland” look it up it’s beautiful and so true. God bless you all. Thank you for sharing your story. September 5, 2014 – 4:18 pmReplyCancel

  • Karyn McKewen - Beautifully saidSeptember 24, 2014 – 8:24 amReplyCancel

  • Aude de la Ferte - my feelings…. exactly…. Here’s to you Benjamin!December 7, 2014 – 6:14 amReplyCancel

  • Felicia Cheek - I have four children with autism and this was perfectly written. Thank you so much for this! Exactly how I feel .April 5, 2015 – 7:38 pmReplyCancel

    • Kristi Campbell - Thank you so much for watching and for commenting and bless you and your four superhero children, Felicia!!April 5, 2015 – 10:33 pmReplyCancel

  • Ulandi Lotter - Hi Kristi, I listened to your recording and only afterwards found this publish as well. It was so amazing to listen to you, I had tears in my ears because it is a reality we also face. I also have a daughter on the autism spectrum who will turn 6 soon. It was and still is such an incredible but hard journey for our family as well. Every word you spoke I can relate to. My sister’s son differ three weeks from my daughter and it is so hard to see how he can talk and reason and play and everything is so normal and natural for him and then I look at my little Clarissa and still see a “baby”. She can barely talk but she really tries hard, but she is such a blessing to all. My two older children also suffers a great deal trying to handle the difficult times but they are such a great support to our family. I would not have been able to cope on my own without my husband and kids (and meds of course 🙂 ). Thanks for sharing your life story so far as I am almost sure it must have been extremely hard for you as well to come to acceptance of all, and that hope we carry in our hearts, we will always have hope…. Good luck to you and your family and I hope to listen to more of your life stories as it is very uplifting to know you are not alone in this journey.April 13, 2015 – 12:34 pmReplyCancel

  • Helen Lenard - Whoops So very sorry-Ijust flagged a comment on my iPad, when Imeant to press read moreMay 3, 2015 – 9:17 pmReplyCancel

  • Wanda LaBillois - I have a son on the spectrum. He is now 11. We had many ups and downs and I am blessed to have this boy in my life. I have learned so much from him. He is my amazing gift. I have had days that when he had a bad day…it had trickled on down to me because I felt he deserved better days. I found myself crying because I wished he was happy. It is an emotional rollercoaster ride and at times I wanted to get off…but only for a moment. He needs me…I need him. On top of his diagnosis he also has a milk and red dye allergy and we changed his diet. Since then, which has been two months, my son has never been happier…he plays more…interacts more with the family…and he so loves telling jokes and we hear how much he loves us. I would not trade my son for anything. He was sent to me for a reason and it takes a damn special person to raise such a beautiful child. Other parents don’t understand what it is that we go through, but they do understand that we love our children the same. Thanks for sharing “What being a speacial needs mom feels like”. It is like that and more! 🙂July 28, 2015 – 11:35 amReplyCancel

  • Angela Daika Shilts - Absolutely love this!! I dont personally have kids (yet). But I have had the honor and privilage of meeting and bring into my family kids that are on the spectrum. Going from kids I have babysat to my own little sister who adopted me into her family.July 28, 2015 – 10:17 pmReplyCancel

  • Kaitlynne Lindsey - thank you for reminding me I am going to be just fine!August 29, 2015 – 10:29 pmReplyCancel

  • Kristi Rieger Campbell - Thank you Gayla.June 4, 2013 – 5:07 pmReplyCancel

  • Kristi Rieger Campbell - Thanks, Wendy!June 4, 2013 – 5:07 pmReplyCancel

  • Kristi Rieger Campbell - Jessica,
    Well…if you click around, you may notice that my mouth isn’t exactly clean, either! Thank you so much for your kind words. I truly appreciate them.June 4, 2013 – 5:07 pmReplyCancel

  • Kristi Rieger Campbell - Thank you so much! And the same to you!June 4, 2013 – 5:07 pmReplyCancel

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