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

The Story

There is no preparation for the emotions that a new mother will go through the first time she holds her newborn.  Joy, obviously, but a profound sense of relief, too.  I felt like I’d exhaled a 9-month long breath that I wasn’t even aware I was holding.  He’s here.  He’s actually fine.  Better than fine.  It all felt surreal to me.  I’d spent almost nine months thinking that I wasn’t worried about him, but touching his sweet fingertips and feeling genuine awe over his perfect paper-thin eyelids made me realize that I’d worried the entire pregnancy.

Because of my incompetent cerivx, I was monitored twice weekly at at the hospital.  I’d go in, greet the staff that I’d spent more time chatting with more friends than doctors at that point, for those few months. I’d get hooked up to a monitor and spend 30 minutes watching a printout reassure me that my and my unborn son’s heart rates were normal.  I think it’s impossible for anybody in our age of ebooks, Facebook, Twitter, global e-friendships forged with once-time colleagues to not be hyper-aware of how much can truly go wrong with a life, even with one born without the fingerprints of experience yet on his soul.

I’ve always been sortof a junkie for sadness.  Don’t get me wrong, I do not want anything big to make me sad in my own life.  It’s more that I get involved emotionally with real or fictional events and cry, every time, at the televised long-distance commercials, the awful ads about texting and driving, a horrible Facebook post about an abused baby.  The event doesn’t even need to be sad.  I can’t watch the end of the Superbowl – even when I don’t care about either of the teams – without having to wipe my eyes.  I feel a genuine connection to the players’ happiness (the winners) and their regrets (the losers).  If it’s sad or momentous in any way, I’ll either outright cry, or tear up.  It can be quite embarrassing at times.  As you can imagine, I made a mess of a pregnant woman.

When Tucker was born, I felt like the luckiest, most blessed woman on the planet.  I nursed him, never let him “cry it out,” believing that letting him cry would make him fell un-loved and unimportant.  I tracked the number of hours he slept, and felt actual, if underserved, pride when he was in the 96 percentile for height.  I believed that it was, at least in part, due to my diligence in getting him enough sleep – yay me! – as I’d read that the good growth hormones are released during deep sleep.  I created what will be, for him later, painfully detailed baby albums and generally just loved and adored him.  I only fed him organic baby foods, used Dreft laundry detergent for his so-soft sensitive skin, gave him baby massages, took him on walks, practiced a lot of the attachment parenting suggestions, and made up songs just for Tucker.  Any little thing I could think of to keep him happier, more comfortable or safer, I did.

Tucker seemed, to me, to be a typically developing boy and said a quite a few words by 18 months, including “bye-bye,” “big truck,” “mommy,” and “daddy.”  At his 2-year check-up, I had become a little concerned that he wasn’t speaking more, and using sentences.  When I asked the doctor about this, she asked me how much he’d said.  Just that week, he’d said “Truck fell down!”  She conveyed that it was quite advanced for a 2 year old to use a 3-word sentence.  So I tried to focus on all of the positives and not worry about it.  The thing is, whoever said that moms always know and to trust your own instincts was right.  There were several alarms for my husband and I during the next six months.

Tucker’s level of participation in soccer should have worried me more.  If the activity wasn’t one that he really enjoyed, he wouldn’t participate at all, preferring to run or to find the patch of light on the field from the above sky-light.  During each class, the coaches created these fun obstacle courses for the kids, where they would first jump over a line of noodles, then crawl through a tunnel, then run through stacks of cones and finally get a ball and shoot a goal.  I never failed to work up a sweat as I literally had to make my son do it.  As in, taking his arms and jumping him over the noodles, running the cones, etc.  Left to his own, even with me holding his hand, he would not run around the cones, he’d kick them down.  He’d pick up the noodle and try to take off with it and he’d very rarely kick the ball at the end of the course.  It was frustrating and heart-wrenching for me to watch other children his age complete these basic courses so much better than Tucker did.  After 6 months, I enrolled him in a soccer class that was with a younger group, thinking his skill levels were more matched to theirs.  After a year, and a day when I had total frustration overload and asked Tucker what was wrong with him once we got in the car, I stopped signing up.  He started crying and I’ve never felt like a bigger asshole.  And I swore to myself and my to son that I would never again ask him what was wrong with him.  I still have a hard time reliving that moment without a giant dose of guilt and tears.  What’s wrong with him?? What’s wrong with me?!?!?  Now I remember to add “just the way you are” after telling him I love him.  I don’t add it every time I tell him that I love him, but I often do. That’s what I want to stick – the “just the way you are” part.

As it became more obvious that Tucker’s language skills were definitely not at the same level as many of the kids we came into contact with, I asked several people, mostly family and friends with children, whether I should be worried.  The standard responses were that he’ll talk when he’s ready, that boys speak later than girls, that he didn’t need to speak as we knew everything he wanted without him having to use words.  That he probably would speak later than his peers as he was never in a daycare or setting where he had to communicate with anybody but his parents. All of these things may be true, but I should have listened to my gut then and not waited another six months to get a referral for an evaluation from his doctor.

After the holidays, we found ourselves in January and at the 2 year 6 month mark.  Most concerning was that some of the words Tucker had used six months ago had diminished, either completely, or in quality. “Daddy” had become “Cha.”  “Bye-bye” had become “Bahh.” We were lucky to get the word “big” in front of “truck” at this point, which had become a shortened version to “tru.”  I made an appointment with his pediatrician.  She agreed that he should be saying more and explained that for his age, he should be using 3 to 4-word sentences.  He obviously wasn’t.

Leaving the doctor’s office that day was hard.  I now had confirmation that there was reason for concern regarding Tucker’s lack of language.  I wondered if I should have spoken to him more while we were out on walks.  Did I not tell him what enough things in his new world were?  Was pointing to the tree and showing him the leaves and having him smell the flowers not enough?  Did all the other mothers spend more time talking to their children?  Could he have hurt his brain during the 2 week period at age 1 ½ when he’d bang his head on the floor until he had a knot there all of January?  It’s really hard to not blame yourself.  And it’s easy for others to hint that it is your fault, even without meaning to.  One friend of mine innocently said that the reason his daughter spoke so well, so early, was that because every time he took her to the grocery store, he named every single item they passed and put into the cart.  I didn’t do that.

The best part of that day was that our doctor gave me a referral to The Infant Toddler Connection (ITC). They offer a variety of screenings, services and therapies for children under the age of three with pretty much any type of developmental delay.  This is an entire world that I never even realized was out there. I had no idea that the federal government provided funding to each state for early intervention services.  From what I understand, each county has a different set-up, and some are more advanced with their therapies and schooling than others.  Luckily for us, we live in Fairfax County, VA and have been blessed with one of the best early-intervention and school systems for young children in the country.

  • Jennifer - You should put this part somewhere else because its so good and I missed it before! I cried about the soccer experience!November 3, 2012 – 7:46 pmReplyCancel

    • admin - Jennifer,
      Thank you for all of your AWESOME comments. I really appreciate each one. I struggled with how to arrange this site. What was it that made it harder for this page to be found? Any suggestions are very welcome!
      Thanks again!
      KristiNovember 3, 2012 – 8:11 pmReplyCancel

  • K - Thank you for this. We are trying hard to understand our daughter (27 months) and what we can do to help her. She is also not speaking in sentences, and uses only a handful of words, many prompted.November 26, 2012 – 12:16 amReplyCancel

    • admin - It’s great that you’re already seeking help for her because I really believe that the sooner, the better. Thank you so much for visiting. I hope you’ll keep me posted on your daughter’s progress.November 26, 2012 – 9:36 amReplyCancel

  • Kenya G. Johnson - It is hard to listen to the gut – when its telling you everything is fine and when its telling you to be concerned. We can beat ourselves up for all kinds of things. The reflection from this post shines that you are an awesome mom! I am glad you guys are settled somewhere with excellent facilities.April 26, 2013 – 8:25 amReplyCancel

    • Kristi - Hi Kenya,
      I’m glad we’re settled, too. And yeah, it’s hard to listen to our guts sometimes. Other people are easier to believe, especially when they say what we want to hear and to be true.April 26, 2013 – 8:35 amReplyCancel

  • Outsmarted Mommy - Sometimes it’s so hard to listen to our mommy instincts. The people around us are constantly buzzing in our ears about what we did or didn’t do and even though most of them are not being mean it’s still hard to deal with. My heart was breaking for you when you talked about the soccer story. From the moment they are born we just want the best for them…lucky for Tucker he was blessed with you, and you will move mountains for him.April 26, 2013 – 9:48 amReplyCancel

    • Kristi - Outsmarted Mommy –
      The soccer story still breaks my heart a little bit. And I really will try to move mountains for him – I really appreciate your very kind words. So much.April 26, 2013 – 10:01 amReplyCancel

  • Donofalltrades - I worry sometimes that my 2 year old has some sort of issue. He’s just such a handful and he doesn’t speak as well as either of his siblings did at his age. As many times as I’ve called him an asshole, I’ll feel like a tool now if there really is something “wrong” with him!June 13, 2013 – 3:07 pmReplyCancel

  • Amy Carlson - I understand where you’re coming from – at not-quite 2, my oldest son was essentially non-verbal, giving single word answers or repetition… when he felt like it. Like Tucker, he doesn’t have a diagnosis, but does receive speech therapy at his daycare, and thankfully has outgrown many of his other behaviors (head banging, making lines, swinging doors). I can’t fault his too much, I see a lot of me in him. His younger brother… well, to put it simply, he is *normal* and makes all of his older brother’s delays that much more obvious.August 18, 2013 – 6:03 amReplyCancel

  • Natalie - Hi, I have just come across your site, when researching information about toddler speech delays. And I’m so happy I did. I can really relate to you story. I have a two year old son (26 months), who is completely awesome in so many ways, but as of yet, apart from babbling a lot, hasn’t started to say any proper words. I am trying to be optimistic about it, but it is so heart breaking watching all the other babies he has grown up with start to chatter away, while he hasn’t even said the word ‘Mommy’ yet. He is very loving and alert, makes lots of eye contact and is probably the happiest child I know, he communicates in his own way by bringing me things to show me, but I guess he just doesn’t feel the need to talk yet.

    It doesn’t stop me worrying though, and thinking that perhaps it was something I did. Did I not talk to him enough? Did I not have nursery rhymes on in the car enough? I also only breast fed on and off for 6 weeks, due to it being such a hellish experience, which I still feel permanent guilt about. He was also put on a course of anti-biotics when he was one day old due to an infection, which I know is not good for his development. But I have slowly come to the conclusion, I can’t change the past, but I can change what happens from now on, which is why I am researching ways I can help him.
    I have spoken to my health visitor, (I live in the UK and I think we do things slightly differently), she wasn’t at all concerned and said that sometimes it can take children (particularly boys) up until they are around two and a half to develop their speech. I also spoke to my doctor who did basic checks and said because he seems to be hitting all other developmental milestones they are not too concerned, he was referred for a hearing test, which was all fine, and he has now been referred for some speech and language therapy. Which he is yet to start.

    I have good days and bad days, I am trying to just relax and enjoy him, as I know he will grow up so fast, but then on the bad days I just wonder if he will ever be able to tell me he loves me and communicate with me and his friends.

    Thank you again for sharing your findings, it is nice to know that there are other Moms out there going through similar experiences.August 18, 2013 – 1:20 pmReplyCancel

  • Kristi Campbell - Hi Natalie,
    Wow, I’m so glad that you found me here, in this huge big internet place. It’s so important to know we’re not alone. First, and most importantly, whatever is going on with your son and why he isn’t speaking yet is NOT your fault (notice how it’s so much easier for me to tell others that, with 100% conviction and yet, late at night, I still go over what I did when I was pregnant, before pregnancy, trying to figure out where my son’s delays happened…it’s a dark and lonely place to go, and one that’s given me much anxiety so PLEASE try to not go there – easier said than done, I know). But like you said, there’s no way we will ever know and even if there were, there’s no way to change the past.

    Second, I think it sounds really promising that he’s doing so well with other things. With my son, although I didn’t realize it at the time, there were other signs. The fact that he was so disengaged in soccer is just one of many… So the fact that your doctors have said that your son is meeting all of his other milestones is really encouraging. Hugely encouraging.

    I think it’s GREAT that your son will soon start speech therapy. I have learned more from Tucker’s speech therapists and teachers than I have from any other resource about tricks to try, how to correct behaviors, and making Tucker ask for what he wants. I hope it goes amazingly well for you and that you see huge strides quickly.

    I know what you mean about wondering if our kids will ever be able to tell us they love us. I have hopes that they will…which is all we can do right now. I will tell you that Tucker’s made HUGE progress over the past year (from age 3 to 4) – more when it comes to speech than the 2 years prior to that. Which is encouraging.

    Please feel free to email me (you can use the black bar thing on the left – it opens a contact form) or just comment back here. I’d be very interested to hear about your son’s progress and how you’re doing. Most importantly of all – please hang in there and try to live in the moment. No matter what, I’m sure your little boy is amazing and I can tell you that I already miss who my little boy was just a year ago – they do grow up so so fast. I’m also sending virtual hugs and support and understanding your way.

    I really appreciate you reaching out. Moms like you are exactly the moms I hoped to find when I started this blog…I felt so alone. I hope you are seeing from your searches that you’re not.August 18, 2013 – 6:51 pmReplyCancel

  • Quirine Gladwish - You just described everything I have felt with my son, including the exact same soccer experiences. For us, Jackson’s speech problems were always there, him having never babbled and only about 5 words at age 2. I carry the same guilt, often thinking, I did everything I was supposed to do, breast fed, made all his baby food, etc. and yet I couldn’t fix this for him. He has been in speech therapy for a year and a half now and has an amazing amount of words but he can’t “talk to us” no conversations, lots of repeating what we ask him. I’m just looking for someone who has been through this and has come out on the other side…Will my son ever be able to tell us about his day, what he likes or doesn’t like, how he feels, etc?September 6, 2013 – 3:01 amReplyCancel

  • Annette Wade - Beautiful. Your post made me cry. As a mother with a special-needs child (and we are still really struggling) this really moved me. I’ve only been reading a half hour but I’m already in love with your little boy and admire you greatly. What an awesome mom you are. “Just the way you are” is going to become my new mantra. I have had the “What is wrong with you” moment, too. 🙁November 24, 2013 – 3:34 pmReplyCancel

  • Gwendolyn Vandenburgh - you are such a wonderful person to have a great beautiful child. where I started I had no one to talk with. my story started back in 1994 of july 1. I am in florida, st petersburgh. I was 24 years old and six months pg. my blood pressure was high so they put me in the hospital it was a wed. june 29,1994. On Friday of that week they told me that they are taking the baby to save my life. jon jr was born on july 1, 1994 at 26 weeks and weight at 1 pd 13 oz. I got a pic of him and was not aloud out of bed. They gave him 24 hours to live. The next day i got to go see him he was very tiny got to touch his little finger. I got to go home on july 4 without my son. I spent a lot of time there at the hospital to learn how to work with him so one day he could come home with me and my husband. He spent 7 1/2 months in the NICU . Came home with oxygen, feeding pump, and monter. He has a 19 surgerys since birth, PT,OT,Speech. Many changes but The first time he said I LOVE YOU MOMMY. It was the best day of my life. Jon jr is not 20 years old finish school, but has to go to a day program because of he can’t be left alone.. get kid as i tell him everyday and he says i am a young man mom. He has CP, BPD, and sezers. health is good, but have to watch the cold weather and milk items.

    We do great American teach for about 8 years now, in schools every November, the last two years he has been speaking to the class to tell them why we are they. He tells them I am here to talk about how we live everyday with disabilities as a family all the things we do just like everyone else, also he sang to them and made me cry, because i didn’t know he could sing.

    my name is Gwendolyn Vandenburgh pround mom and a wonderful wife.
    please find me on face book. anyone because we are all special in every way you can see.

    thank you for letting me sharing my storyDecember 11, 2014 – 7:35 pmReplyCancel

  • Krista Haynes Sebastian - I just saw your video. I feel like I need to tell you it’s going to get so much easier and better. My autistic son was diagnosed at 2. I have many friends in the social service network so I got lucky. We hit the ground running with intervention and he is now 14. Lots of friends (girls included). Honor roll all year this year. And it just keeps going. No he’s not a normal 14 year old. He still plays with toys and gets hung up on subjects he cant stop talking about. But most importantly, he’s learned to be comfortable with his “autistic self”. And as a result, his peers are very accepting of him. Keep up the good work!!March 25, 2016 – 4:04 amReplyCancel

  • Extreme Mom - A very moving story. I can relate to the soccer scenario as it was my child who also played in the net and picked dandelions during games. He’s on the high functioning end of the autistic spectrum. It’s all good. You reroute, change your expectations and push forward. Normal’s over-rated. 😉June 14, 2013 – 1:47 amReplyCancel

  • Kristi Rieger Campbell - Donofalltrades, you’ll figure it out and it’s ok to not know anything at 2. If you really are concerned, you should ask your pediatrician though. Just saying. Early intervention matters a lot. June 14, 2013 – 6:48 pmReplyCancel

  • Kristi Rieger Campbell - Extreme Mom, sounds like our kiddos are very much alike! Tucker doesn’t have a diagnosis but he’s on the autism spectrum as well and receives ABA therapy at school – it’s really working!
    June 14, 2013 – 6:49 pmReplyCancel

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