.jpg "About Finding Ninee Photo")
This page is about Finding Ninee (the site) and its origin and purpose. If you’re looking for more information about Kristi Campbell, the woman who started this site, visit the About the Blogess page.
This website is dedicated to parents everywhere, most especially moms like me who are navigating what I call “The Middle World,” the world of raising a child who is not typical, but also does not have an official diagnosis of autism or PPD-NOS. My son has a speech and language delay along with some general developmental delays. We realized that he wasn’t talking enough when he was about two, but were told that he seemed fine. At his two-and-a-half year check-up, we brought up his lack of language again and were then referred to Early Intervention.
When we first received our son’s not-really-a-diagnosis-diagnosis, I started to research (and by research, I mean Googling on my iPhone while eating) developmental delays, looking particularly for information from parents in similar situations. I wanted to know if fish oil worked to improve speech and language, whether people had tried B12, and whether other kids run laps when they start to get sleepy (is that a stim??). I found a lot of websites and mommy blogs written about parenting autistic children, Down’s Syndrome children and adopted children, but none that fit me, and our life just right.
Not finding sites and blogs that weren’t focused on a specific diagnosis made me feel alone, and so I started to this site – to share and to find others in similar situations. Honestly, this site has been a life-line for our family over the past three years and has given me wonderful opportunities and helped me to find amazing people who are in similar situations.
One of those opportunities was a chance to read What it Feels Like to Be a Special Needs Mom to a live audience at DC’s Listen to Your Mother show. You can see the video here:
.jpg "Kristi Rieger Campbell Video")
Why “Finding Ninee?”
My son used to call airplanes “Ninees” (pronounced nine-ee, or 9E). I have no idea how he came up with such a strange way to pronounce the word labeling one of his favorite things in the entire world, but it is what it is. In choosing a name for this blog, I went against my (much smarter than I am) friends’ suggestions that “ninee” is too close to “ninny” and “wouldn’t it be better to name it something that people could actually find if searching for speech and language delays in children?” advice. To me, finding ninee is symbolic of us searching for answers. To learning how my son’s brain works and helping him acquire the skills he’ll need to navigate his life. That’s why.
Interested in more info?
About Kristi, Finding Ninee’s creator
Get Ninee in your inbox! No icky spam ever, I promise.
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by Kristi Campbell
Cindy Hendricks - Hi
I feel im in a simalar situation, my son is 5 years old but his speech has got a lot better, and his social skills is quite good he has lots of friends at play school. they seem to understand him. I can see it helps with his communication skills. but here an dthere you cant make out what his is saying. One thing he understands everything say to him he knows alot. His on par with the kids its just his does not speak like a normal 5 year. its lovely to know that there is another mother that knows what we going throughOctober 26, 2012 – 7:51 am
admin - Hi Cindy, thank you so much for visiting and commenting. Are you doing speech therapy or ABA or both? I’m glad to hear that your son’s speech has gotten so much better. That’s the goal, right? And yes, it’s wonderful that there are other mothers going through the same, which is why I appreciate your comment so much. Thank you!October 26, 2012 – 2:57 pm
Jennifer - I love the name finding Ninee, especially now knowing why. It’s so great that your such a warrior mother shouting to all about your sons speech and language delay, even without the autism. I’m sure it’s frustrating not being part of a support community like autism parents have because there’s a lot of them and they all have that diagnosis. Please keep going on your website blog!November 3, 2012 – 7:44 pm
Tina - Hi! My name is Tina and my son’s name is Max. I have really enjoyed perusing your blog tonight. We have a lot in common, incompetent cervix, boys with speech delays, and having a kid later in life! Thanks for sharing your stories you are very braveNovember 13, 2012 – 10:39 pm
admin - Hi Tina! Thank you so much for stumbling across Finding Ninee! You have no idea how much it means to me that I’m finally reaching the people I wanted to reach when I started this a few months ago. There are times I’m discouraged as I don’t really know how to reach YOU and yet, here you are. Thank you huge for finding us. And I’d love to hear more about your story, if you want to share it…November 13, 2012 – 11:44 pm
Tina - Hi! Here is my story, and I will try to make a long story as short as possible!
When my partner and I first fell pregnant, we were, of course, thrilled and thought nothing could go wrong, but sadly, everything did go wrong. My sister was diagnosed with stage four ovarian cancer and died four month later (she had found out WAY too late to go into remission) and right after she died, at 23 weeks pregnant, we lost our son, due to an apparent incompetent cervix.
It took quite a bit of time to pick up the pieces. We moved on, I took some time off work, and eventually we bought a big 150 year old home in west end Toronto, that needs a lot of work. Things were looking up. We had the life we wanted, cycling to work, walking to the coffee shops, markets, butchers and parks, drinking lots of wine and having bbqs.
When we fell pregnant again, I went to our family doctor and insisted on being placed in the best high-risk pregnancy clinic in Toronto. And, being a big city in a country with great health care, there are plenty, so I was so lucky to have my wonderful doc, Dr Whittle. She really helped me make sense of our loss, monitored my cervix weekly, sometimes twice a week, and recommended a cerclage at 21 weeks. I signed up. I totally trusted her.
We had Max, our beautiful, wonderful son in April 2010. He hit all of his milestones just fine….except talking and gestures. I don’t think he really pointed at all until about 16 months, and it was only at pictures in books, and his first word with meaning was at 15 months, “Daddy” His idol, of course!
He is now exactly 31 months, 2 and a half years old. His pediatrician flipped out when he was 12 months old, told me to get him in speech therapy that I should talk to him more, talk to him non stop and that we should only speak English at home. Well, that wasn’t going to happen. I would say we are a typical Toronto family, where several languages flow easily in the household. I refused to change that. I also really hated the suggestion of talking to him more, I am such a quiet person, it was really difficult for me to do.
When Max started daycare part time at 18 months, they told me he did “follow” the other kids enough. He wasn’t like the other kids.
There is SO much to say about Max’s story, but I will tell you where we are right now:
I have not had him assessed by a developmental pediatrician, I feel he is too young. I was thinking around 3 and a half would be a better time
He is in Speech Therapy, a therapist started coming to our house weekly, he has just started. He says words, and sometimes two words together, but not “Mommy up, or Max hungry” which I suppose is what he should be doing. He says “open door” and “jacket on” and things like that.
He can say plenty to words, and uses them correctly, but still has trouble communicating. For example, tonight when he finished his little bowl of goldfish (you know those little crackers kids go bananas for) instead of asking for “more” which he know, he just started crying in frustration at having an empty bowl.
He is very happy and easy going, generally, although he has the occasional fit. He enjoys kicking a ball and puzzles, he is very engaged in us, his parents, and gives the people he knows hugs and kisses. He has a good sense of humour too. But at the same time he isn’t social (which they say at daycare isn’t normal) he has sensory issues, he chews on many things, he runs around the fence at the playground, and sometimes lies on the floor when he plays. Overall, I can see other kids his age are “ahead” and it guts me.
What am I doing? Obsessing, worrying, being upset. I also considering an occupational therapist, and am looking for new daycare, somewhere with less kids, and with more of a Montessori approach, which is about individual development, not just the group.
Right now, I am pregnant (at 42!!!!!), and yes, once again I have a cerclage and its a boy! I worry, what if we have the same issues? What will happen to my little Max in the future?
I do not believe Max is on the Spectrum, it just doesn’t fit (and man, have I read A LOT). I have had someone suggest Sensory Processing Disorder, and am reading a book on that, but too be honest, it sounds confusing and broad.
Can kids just be slower than others? Does everything have to equal a DISORDER?
I will look through your blog some more…..thank you so much for listening and your support. Tucker is perfect!
Tina
x0November 16, 2012 – 10:00 pm
Tina - PS: I don’t think Max would have done the soccer obstacle course either.
Do you ever wonder, are we expecting our kids to fit in mold, perhaps they are just different? And if we were moms 40 years ago, no one would have said a thing?November 16, 2012 – 10:21 pm
admin - Hi Tina,
First, THANK YOU so much for finding us and for sharing your story. You’re the first person (just started this page a couple months ago) who has shared so much. I appreciate it. (and wonder how you found us?).
First, CONGRATULATIONS on being pregnant again! That’s so exciting. I wish we would have moved more quickly after having Tucker (I turned 41 just seven weeks after he was born and am now 44 wondering if it’s too late). So really congrats. I’m really happy for you! And if your new son does have issues, it’ll all be ok.
Second, YES, I totally think that if we were moms 40 years ago, that nobody would have said a thing about our children.
Third, and fourth and on and on randomly for the rest, I love the idea of Montessori as it’s what I was in as a child. I love their individualized approach. We decided not to do so yet for Tucker as the ABA focused program he’s in is really intense and I think he needs to be pushed. If not, he will always choose not to talk.
Tucker’s speech is funny. Some things are perfect (Mommy, go do bubbles?) and yet “truck” is “tru” and for us, goldfish and cheddar bunnies snacks are “nach” with a sniff on the end including a weird jaw movement. Why? No clue.
Also, I think you’re right to hold off on the developmental pediatrician. We didn’t learn anything from ours. But, that said, I don’t really know how different the medical care in Canada is from here, maybe without some of the US battles with insurance, you’d actually get a better evaluation. I think they need to have several hour-long meetings with a kid to even come close to knowing what the issues might be. With that said, do you have a program similar to the US of Child Find? It’s the early intervention services, where kids get free preschool help based on their specific issues. Here, it’s spotty, and I know the services vary from county to county and state to state. I don’t know whether it’s different there but the ABA schooling Tucker’s getting is really seeming to work. He’s trying to talk more (even though a lot of it is not great, it’s an effort that I’ll take).
I think you should keep speaking whatever languages you speak to Max. I have read so much about language and know that the reason the US is so far behind that way is that we’re not introduced to languages until our brains are almost too mature to accept them easily. I’ve heard a LOT that when multiple languages are spoken in a home that the child speaks later but when he does, he speaks all of them. That’s something to try and keep, if you can, I think.
When you write about some of the maybe spectrum stuff, I know what you mean. Tucker doesn’t really act autistic. He doesn’t really act like he has sensory issues, but I can see why others ask me about them, because sometimes there are issues.
It’s so hard to know. It’s great that he’s in speech therapy though, I think that it not only helped Tucker when he was Max’s age, but it helped ME to know what I was supposed to do. I was typical 40-year old first mommy and knew when Tucker wanted juice. I just gave it to him. Turns out, he was supposed to ask for it. Little things like that. She also suggested games we could play to make him more accepting of taking directions for when he would be in preschool. I think they really helped. He threw a fit when we first started but then really came around.
Even still, we’re being taught things to do. He has a hard time with “p” so we’re supposed to put a feather on the table and blow it using “p” sounds, encouraging him to do the same. We’ll try it this weekend.
I’m sure I forgot to mention a few things but I’m SO GLAD you found this and that we can compare notes! It really helps to find other moms going through the same stuff. I was so frustrated a year ago when everything I Googled about speech and language delay took me to autism sites, where I didn’t feel like I belonged, at all…
Best to you and Max and the new little one too. I hope he hangs in there for you! I was too late to get the cerclage with Tucker but if nature were to defy itself and I were to get pregnant again, I would totally demand one and be on bed rest the whole time! Stay well <3November 16, 2012 – 11:50 pm
admin - Also, I used to have a section called “your story” and I took it down because nobody posted to it. I don’t know how to allow you to post to it, but if I put it back up, would you be interested in having this there, too?
It’s interesting that your pediatrician flipped out at 12 months. here, they weren’t worried at all until Tucker was Max’s age. 12 months is YOUNG to talk, isn’t it??? (see I really don’t know)
I want to say too that recently, I’ve made a lot of just silly posts. I felt like I was going on and on about the speech and language delay world and that maybe this needed some comic relief. Or, maybe I just needed some comic relief. Anyway, if you’re searching for more spectrum stuff, or just inspirational stuff, check out the favorites page (Liminal Moments and Blessed are my most popular posts ever). November 16, 2012 – 11:51 pm
Tina - I would totally post to “your story”! and it would be a bit more thought out and thorough. For example, rereading what I wrote, I realize I said Max follows others in daycare, and I meant to say he does not follow others! In fact, I had someone from Community Living observe him and they said he followed activities “with support”.
Its so discouraging. At home, like this morning, I woke up, Max asked “milk?” “bread?” hugged me, kissed me, smiled, ran up to me and arched his back because he KNOWS I will catch him before he falls and hold him upside down which is loves. I think to myself “Everything looks find here. Just a little boy having fun and full of love and a hungry belly”
But then I listen to the daycare workers and I hear “he doesn’t ever say a word in daycare” “he gets frustrated easily” “he just sits by himself and pushes a car all day” “he doesn’t do crafts” “we don’t know what is wrong with him, we aren’t qualified for that” and I feel so sad and discouraged. This is not the Max we know at home.
Like Tucker, he just won’t speak at daycare.
I asked them, do you do animal sounds? Do you practice body parts? They looked SHOCKED and in disbelief that Max did those at home. He knows ALL his body parts! He loves animal sounds! Now he does them there (interestingly, they made him do that stuff to the woman I had observe him.
The daycare I have isn’t top notch, even though its licensed by the city. They communicate very little with us. Which is why I can’t wait to change, and cultivate a relationship with the care givers. He is there three days a week.
At two and a half, Max started going through a phase where he has a fit if he doesn’t get his way (like we don’t open the basement door, or go outside on demand). He screams. Any advice? I suppose this is regular toddler stuff (is it?) but everything he does is overshadowed by his delays for me. I always think “is he like this because he is delayed? is this tantrum a red flag?” It doesn’t seem fair.November 17, 2012 – 9:03 am
admin - I know exactly what you mean thinking “all is fine here, just a happy boy having fun” and also what you mean when you wonder whether he does x, y or z because he’s delayed. And it’s not fair. I worry about it all the time, although I try not to. Because if Tucker IS autistic or whatever, what can I do but work with him as much as possible to catch him up!? Honestly, I think the tantrums are regular toddler stuff. Re: advice on the tantrums, Tucker has them sometimes too when he wants to go outside and it’s nap time or something. He’ll sit down and scream. Sometimes, he’ll even scratch his own face or something. It’s horrible to watch. We started just walking away if he won’t let me give him a hug and calm down. It seems to work. Or we bribe him with something else. Like, saying we can’t go outside now but we have time to play with play dough for 10 minutes or something. Honestly, the best thing for tantrums was just growing up a little. Tucker’s were terrible at 2 1/2 but now that he’s 3 1/4, they’re much better. And when he does have them, they’re much shorter and less drastic. Hang in there. I don’t know of a magic way to stop them. You know, from what you’ve said, it really doesn’t sound like Max is on the spectrum. If he is, it sounds really minor, right? The affection he gives you, asking for milk and bread, kids that are more severely autistic would never do that stuff. It’s frustrating though.
And I know so many people who had late talkers (especially boys) who just started speaking in full sentences when they were older. I’ve read Einstein didn’t really speak until he was four years old.
Does Canada have early intervention services? Seems like your daycare should be trying harder with Max. Tucker’s actually in a school where they teach and make him ask for everything he wants. There are three teachers to six kids and they work with them (in fun ways) the whole time they’re there. I’ve really noticed a huge improvement with him trying to say more words.
And I’d love if you want to email me something to put up on “your story” although I think what I’ll do, rather than it just being a guest post with a category link is I’ll set up a new page called “The Village” where I can feature stories like yours. You can include photos, whatever info you want. Links to your Facebook, or anything. You can be anonymous or you can have your name. It’s whatever you feel comfortable with. Because it’s easier for me to write than it is to figure out how to manage a website, you’d have to email it to me and I’d post it for you as I am clueless how to grant access to just one page. And even if I knew how, I’d risk getting the evil spammers posting crap to fake gucci bags and stuff (today I had 25 comments waiting approval and 21 of them were crap spam).November 17, 2012 – 4:14 pm
Sara - Hi Tina,
I appreciate hearing your story and I completely sympathize with not knowing what is attributable to natural differences in kids and what is indicative of an underlying problem. It does feel like people are hyper-sensitive to variance these days, when variation is the most natural thing in the world. … but if there’s something a parent could do to try to make things better, why wouldn’t that parent try? It’s an ongoing battle. My niece has a rare thyroid-hormone-resistance and it messes with her in so many ways. When she acts up or has a tantrum, we never know if it’s her hormones affecting her, her meds messing w/ her, or just a regular little-kid tantrum. We want to discipline the tantrums, but at the same time we want to treat her kid gloves b/c we know things are harder for her.
On the flip side of that, my pseudo-step-son is high functioning with Asperger’s, but his mom coddles him and tells him he’s different/special so much that he doesn’t feel empowered to do even the smallest things for himself (when I know that he CAN, when given a chance). I’m not suggesting that we should deny that he’s different/special, but we should use that info to focus on what he needs to do to get things done (that might be different from how others manage), rather than have him focusing on “it doesn’t come naturally to you b/c you’re different,” which I believe gives him the excuse he needs to not even try. So on the one hand I want to cut him some slack b/c it takes him longer, but on the other hand, I want him to WANT to do it all on his own.
It sounds to me like you need to look for a new daycare facility for Max. They either aren’t giving him enough attention or they simply don’t know how to deal with him. Either way, sounds like it would be better for everyone if you found a new place.
I’m a big fan of the walking away/ignoring tactic for dealing with a tantrum, but it obviously works much better at home than when out in public.
Kristi, I wouldn’t call your tantrum tactic bribery, I would call it NEGOTIATION. There’s a difference (not least of which is for your emotional health so you’re not feeling like BadMommy for bribing your kid; you’re a GoodMommy for negotiating).November 18, 2012 – 1:08 pm
admin - Sara, you rock. Thanks. 😀November 18, 2012 – 7:04 pm
Tina - Can you explain the difference between being autistic and being on the spectrum?November 30, 2012 – 11:26 pm
admin - Hi Tina,
Basically, autism is a spectrum disorder. Kids like Tucker can be on the autism spectrum without having an official diagnosis of autism from a doctor. The main symptoms that are on the spectrum are delayed speech and language, delayed social interaction, can include needing a routine, meltdowns, echolalia (when they repeat sentences from television or songs) repetitive behavior, stimming (flapping or rocking), and a whole bunch I’m probably forgetting about.
The autism spectrum is huge. Tucker has a few things on it, most significantly his speech/language delay. But when he saw a developmental pediatrician, she doesn’t think he’s autistic because he’s very loving, made eye contact with her, played with her, etc. (Honestly I am not sure what all she was looking for but those are some she mentioned).
Symptoms and severity can vary a lot. Also, people can be diagnosed with other spectrum disorders but not total autism, like Aspergers, PPD-NOS, (Pervasive Developmental Disorder-Not Otherwise Specified), and Rett Syndrome.
Does that make sense? I think, to boil it down, when most moms I’ve spoken to with autistic kids, it’s pretty obvious to them and to their doctors. Then there are kids like Tucker, who sometimes act autistic but never have a lot of the other symptoms so get no label. Hope that helps. I should also say that I am NOT a doctor or qualified in any way to diagnose or anything even close. I’m just a mom of a little boy who is looking for answers. December 1, 2012 – 5:33 pm
admin - Hi again Tina,
Sorry I didn’t at first realize it was THIS TINA, as in YOU! I was wondering how you were doing. How’s the pregnancy? How are you? How’s bed rest going with an active Max? Hope you’re all ok! So happy to hear back from you!December 1, 2012 – 10:40 pm
Leyla - thisdayilove - I love your blog and i really love how you came up with the name. Its a journey for you both to take together like a journey on a planeDecember 5, 2012 – 7:11 pm
admin - Aw, Leyla, thank you HUGE. I love that you get it. Thank you for getting it. It really IS a journey. To find words, to find out why airplanes are ninees, all of it.. thank you. I’m going to your blog now…December 5, 2012 – 10:12 pm
Nikki - Hi, I just wanted to say congrats on being nominated for a Liebster award along with me! I’m a new Bloglovin’ and Twitter follower, can’t wait to see your Liebster post!
NikkiMarch 26, 2013 – 8:14 pm
admin - Hi Nikki! thank you so much and congrats to you for winning! I’ll check out your blog now and follow you back. 🙂March 26, 2013 – 11:09 pm
Stephanie Ann - So far I love your blog. Even though my son is not autistic, I still love posts, the humor and the pictures of your handsome lil man (God bless him <3) And I must congratulate you, you're an amazing mother and an inspiration... Thank you for letting us follow your life and the life of your little angel <3.April 24, 2013 – 12:20 am
Hope Faith Love Always - Absolutely love your blog! Your an amazing mother and an inspiration! Thank you for letting us in to your adventures as a mom to your little angel God bless you all! <3April 24, 2013 – 12:23 am
Tom - Hi all! I have a simple observation and nothing more. Tucker is my little Nephew (well if you knew him he won’t be my ‘little’ nephew for long) and one thing seems to stick in my mind from last Christmas. It bought forth all these past memories about certain events that started to freak me out.
My wife’s late Grandma (nicknamed Mouse) had all the symptoms but no diagnosis of Parkinson’s disease. She had tremors for the last several years of her life and the tremors got progressively worse, occurring all the time and not stopping. The last visit we had with Mouse, before she passed away, I remember Beth (my wife) rubbing her Grandma’s feet to comfort her. All of a sudden Mouse’s tremors totally stopped for a good 10-15 minutes. I had never seen anything like it…a miracle from something as simple as a foot rub!!! Not medicine, no doctors saying do this or take these pills, it was a simple foot rub.
So fast forward to December 2012. Tuck and I played ‘tag’ and ‘hide under the blanket’ one afternoon for hours. I actually reached him at a basic level for the first time. He was so engaged in the games and I saw him counter my moves, meaning he was problem solving and getting strategic. It’s pretty cool. I always thought Tuck was a ‘special’ kid that needed special engagement. But that was so wrong. Tuck is just a kid who needs the same interaction and engagement my other nephew needs, he just needs to be engaged in a different way. We all learn differently. Heck I was sent to a special learning disabled high school cause Dad didn’t know what to do with me. The reality was I didn’t learn from auditory or visual methods, I needed kinetic learning. Once I started learning kinetically I killed it. I ended up with the 2nd highest GPA in my graduating class.
So here we are in 2013, you all talk about your children’s deficiency and sub-normal social behavior, but I actual get Tucker. There really is no normal, there is only life and our issue of comparing our inside ‘stuff’ to what we see with other people’s ‘outside’ stuff, and in that case we or our kids never measure up. My observation is this, when the doctors, speech therapist, and clinical professionals aren’t helping…maybe we should all rub some feet ^^April 24, 2013 – 6:07 am
Kristi - Tom,
You. Are. Awesome.
Thank you. And yes, let’s all rub some feet! Just not Barbara’s.April 24, 2013 – 7:23 am
Kristi - And Tom, you’re so right. There really is no normal. How wonderful that Beth was able to still Mouse’s tremors with feet rubs. Beautiful story.
Also, regarding kinetic learning – you are spot on. They do a lot of that at Tucker’s school. It works. And you rock. Did I say you’re awesome? Because you’re awesome.April 24, 2013 – 8:18 am
Sara - I’m in! Let’s all rub some feet!
(Kevin is so going to rub mine tonight. Who knows what it could make better?) 🙂 Really nice comment, Tom.April 24, 2013 – 7:43 am
Kristi - It really is a nice comment Tom. And yay Sara that Kevin’s going to rub your feet.
Ah hem. Robert? Are you reading this?April 24, 2013 – 8:17 am
Dana - Just came across your blog (via Mommy for Real) and I wondered what your blog name meant, I was merely curious not confused, and now after reading this I also agree it is a perfect name. What a lovely and touching story. I wish you the best of luck navigating this middle ground. Your boy is clearly in good hands.
-DanaMay 4, 2013 – 11:51 am
Kristi - Dana,
So glad you came by and hope you’ll be back and I’m really glad that you think Finding Ninee is the perfect name 🙂
Thank you so much for your kind words.May 4, 2013 – 5:07 pm
Elena - Please help me! As I write this I am literally in tears. My son Eli is 31 months today and he has not started to put two words together yet. We had him evaluated and he does have a speech delay. He is seeing ST once a week however, I am worried that it’s not helping. We speak both English and Spanish at home and often wonder of this is the reason for the speech delay? He know a lot of words but doesn’t put them together. For example if he wants a cookie he will just sat cookie if he wants juice hell just say juice. My husband and my mother say I am overreacting but something just doesn’t feel right. When he was evaluated for his speech they told me autisim was out if the question but I always wonder. My son does many if the things you deacribed especially that of running back and forth from the same spot. He does however follow simple directions and he can sing many songs. I wonder is the is a sign of echolalia. When I ask him what he wants hell simply repeat what I say and not doesn’t answer the question.
Please help me 🙁 I don’t know what to do?May 4, 2013 – 4:16 pm
Elena - Sorry for all the typos. I was typing and crying and didn’t realize how many mistakes I had made.
This has all been very difficult for me. Many people tell le to wait and see what happens. Everyone tells me he is just going to be a late talker and that one day out of the blue hell just begin to talk… What if that day just never comes?May 4, 2013 – 4:19 pm
Kristi - Hi Elena,
Aw, I’m so sorry to hear that you’re dealing with the worry of wondering what’s going on with your son. I know that feeling well and have shed many tears myself.
I’m so glad you’re reaching out. For me, one of the hardest things in the beginning was not knowing moms who I could compare Tucker to. I knew moms of typical kids but nobody who was experiencing worrying about a delay.
So. First, huge hugs to you. I know what you’re feeling and have been there and am in many ways still there because we don’t know if Tucker is autistic or not. I try to tell myself that it doesn’t matter if he is because he is getting the help he needs.
With that said, I don’t know what area you live in but I think that there are Child Find (or the equivalent in other areas) offices everywhere. Is that who evaluated Eli? Have they offered you other services like preschool? I think the first thing to do is to go back to the people who evaluated him and find out what more they can offer.
I am a firm believer in not “waiting and seeing” and wish I started to look for answers even earlier than I did. But it’s also never too late. I have heard that bi-lingual children speak later but I am not an expert on that and do not know how late that may be.
The therapy that Tucker gets at school is what has helped him the most. It’s helped him to learn more words, to pronounce them better, and it’s helped his behavior. He is in a Preschool Autism Class where they use Applied Behavior Analysis therapy all day long. I really believe in ABA. It’s helped him more than speech therapy did.
I think it’s wonderful news that Eli sings many songs because that means he CAN say the words (Tucker does not – he just now started trying to sing the last word in choruses he’s familiar with). The thing about autism is that it is a huge spectrum, and there are no blood tests or things like that that tell you if it’s autism or not.
There are people who do intensive evaluations. We have seen a developmental pediatrician who did a short evaluation and we (just this week) asked for a referral to go to a Neuro Psychologist who specializes in evaluations. From what I understand, they spend about six hours with the child and evaluate in many areas. I want to do that with Tucker, mostly because I want to make sure that if there are other therapies that would help him, that I make sure to do them.
I can tell you that I believe from what you’ve said that Eli will continue to make progress. I can also tell you that I think you should get more information about what services he can receive. I promise that preschool has been wonderful for us. Tucker started when he was 3 years and 3 months but they have programs for children younger as well. I’d ask your doctor about early intervention and Child Find, if that’s NOT who already evaluated him. If they are the ones who did the evaluation, I’d ask them for more services.
I hope this helps. Please know also that I am not an expert and continue to learn about therapy and autism and Tucker every day.
Also, feel free to email me if you want to – I’d be happy to speak on the phone (but obviously don’t want to put my phone number here). You can use the black bar on the left side of the blog to email me directly.
Hang in there and know that you are not alone. You’re not. I promise. There’s a whole huge world out there that understands what you’re going through and will embrace and accept you and Eli just the way he is, and only want to help. Really.
KristiMay 4, 2013 – 5:05 pm
Donofalltrades - This is too sweet. I’m going to recommend your blog to some of my lady friends who I think are in the same boat as you with their kids.June 12, 2013 – 5:41 pm
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Palomiux Castillo-Vargas - Just found you! we are in same boat 🙂 love your blog !October 4, 2013 – 2:30 pm
Anonymous - Just found your blog and looking forward to reading every entry. My son is also somewhere in the middle. He is 4 (birthday in October) and we have been in speech therapy since age 2 with very slow progress – more like he is not going backwards but is still 2 years behind. Just started aba therapy for non behavioral stuff like speech, social communication, potty training… but I’m not sure my aba therapist (or speech therapist) are a good match for my son. I hope to learn from your blog and I hope you continue to update.November 14, 2013 – 2:48 am
Andres - Hello! Trying to find some answers for my son’s behavior I came trough your blog. I love it. I find it very therapeutic, I read every single post. It helps me to realize that we are not alone. I have to confess that I discovered it a couple weeks ago but just now I have the strength to share our story.
We are from South America. My wife and I came to the US 5 years ago when I got transferred. I’m part of the diplomatic mission of my country.
My son’s name is Juan, he is 4 now. He’s been attending daycares since he was 18 months; we both work full time jobs and don’t have relatives living in our area.
First he attended a Montessori daycare. At 2 he wasn’t speaking too much compared to other kids. The Montessori program is really expensive and we didn’t see too much progress. We thought that our son needed a better and more structured program, since we are always busy and spend just a few hours with him on weekdays (when I’m not traveling); we found another one for him. He was 30 months by then.
Juan was a typical kid. Terrible at restaurants, he won’t follow directions very well, and little bit spoiled. He’s our only child. Absolutely normal if you asked me.
He would say basic words like mom, daddy, milk, trains, cars, but no 2 or 3 words sentences. Most English. We focused on one language following the pediatrician advice.
A couple red flags came up. We were at a birthday party when I noticed he wasn’t looking at the camera for a picture. Never. All the other kids would stop, pose and smile for the camera. Juan was simply not interested. We would refuse to stop playing, or doing what he was doing. He was even mad if mom tried to make him pose. Then, tantrums. One day he wanted a book from school. It was a lighting McQueen color book. I tried to make him understand it wasn’t his and he just couldn’t take it home. He was so upset. He cried, kicked, yelled, everybody came out to see what happened. I had to grabbed him so strong at the point he couldn’t move, and took him out of there. I tried to buckle him up at the car but it was impossible. He moved kicked, cried. The director of the daycare came out to my car trying to help. She would try to say exactly the same I said to juan. She even offered me the book, and let him get it. I just didn’t want him to get the wrong lesson. It wasn’t his book; sometimes he can’t take what he wants. He calmed a little after 15 minutes and we left.
I kept thinking about it. My wife told me it was normal for a 2 yo (only child). I called the director of the daycare the next day and she told me it wasn’t normal. She gave me the numbers of the Early Intervention Program of our County. They made 3 or 4 assessments and included Juan in the program saying he was in the spectrum of autism (no diagnosis so far).
He’s been attending the program for over 18 months and now he’s making 3,4 words sentences. His academics aren’t an issue according to the teachers. The therapist told me that he’s interested on other kids, the interaction etc. It’s his speech delay that won’t let him communicate effectively and gets disregarded by other kids when it comes to participate. Also he won’t respond when strangers talk to him or ask questions. He won’t say hi, bye or tell me how was school today. I don’t know if he has echolalia. He repeats what I ask to him but would change the “you” for “I”. Juan do you want more milk? – I want more milk. Juan do you want to play angry birds? – I wanna play angry birds. The only thing he answers correctly is – Juan do you want to take a shower? – no. :s
When I found your blog, I was trying to understand why he mimics everything he likes on TV. Characters jumping, running, falling etc. he would do what he sees and finds it hilarious.
Other than that, Juan is a perfectly “normal” kid. He would eat anything, he wears any fabric, goes to the movies runs jumps etc etc. He’s more curious may be. I took him to see Jurassic Park 3D and he ran to the screen trying to figure out where the dinosaurs came from.
We went to Cars Land (Disney adventure land) and this real sized car with music and dancers hypnotized all the children and made them dance and jump. Juan approached to the car and analyzed how it was moving, where the sound came from etc while everybody else was dancing.
I just love my son so much. I don’t think anything is wrong with him. He’s kind, lovely, mellow, smart. He knows what he wants, what he likes. Toys, action figures, books, animals, cars, sounds, numbers 1-20; he plays with everything and not “obsessed” with one particular subject. He’s a happy kid.
I get frustrated sometimes when the kid at home is not the same outside. I would like every body to see him the way I do.
I think normal shouldn’t be a word to classify human beings. We are all different in a way.
Thanks for this space. It’s so relieving to see that there’s a lot of people sharing the same feelings, joy, anxiety, happiness, frustration. Thanks a lot for sharing your story and allow us to share ours. Sorry! I just realized I wrote this much.
Thanks for your time and dedication.
AndresJanuary 20, 2014 – 4:59 am
Kristi Campbell - Andres,
THANK YOU so much for sharing your story. I think that in many ways, Juan sounds the same as Tucker but also more advanced (it was the Angry Birds thing that got me – Tucker does not get that type of game yet). The whole speech thing is so hard and I also wonder if you live near us given that you are part of the diplomatic mission of S America and that the program is called Early Intervention (in other places it is often First Start) (we are in Fairfax county). Anyway, that part aside, I agree that it is so hard to know but also that so many people told me that Tucker would just “start talking” and he didn’t. Now, he’s talking but his language is really hard for him and he messes up word sounds…like “small” is “moffs” and “strong” is twoff. It’s like he can’t use two consonants together and he understands everything, but somewhere, his mouth messes up the words. He recently had an evaluation and she thinks it may be apraxia, which just means that the motor planning to the mouth is hard (and needs lots of speech therapy).
From what I know of ecolalia, they don’t change “you” to “I” but I’m not certain about that. UGH all of this is SO HARD. Tucker won’t pose for the camera either. I have a 1,000 photos of the back of his head. I think you’re right though, that normal is not normal.
My husband reminds me all the time that he was a remedial reader until first grade and he now has three master’s degrees.
How are the words that Juan uses? Like can he pronounce them correctly? And does he ask for things or go get them himself?
THANK YOU so much for writing!!!January 22, 2014 – 10:44 pm
Kristi Campbell - PS I’m not sure if you saw my “Our Land” series but I’d love to share your story there, if you’d like to write it for me! I mean submit it officially other than the awesome comment you left 🙂January 22, 2014 – 10:46 pm
Kate - The middle world…I love that. I feel like I am in it every day. I often say that I am holding my breath and that sometimes I feel like I am just going to disappear. My son just turned 3 and has no words. We are doing lots of speech therapy and are still trying to figure out how to navigate through all of this. But Cooper is bright and sweet and loving and we just need to figure out how to get him talking. Thanks for blogging!January 23, 2014 – 9:57 am
Kristi Campbell - Aw, Kate! I can’t believe I’m just seeing this (the comments on pages other than posts ugh, I suck but THANK YOU). I’m sorry that you relate to the Middle World -it’s a hard place to be so often and I’m so sorry you feel like you’re going to disappear. 🙁
Let me know if you’d like to talk on the phone and again so so sorry I missed this when you posted it!!!July 22, 2014 – 12:32 am
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Kathy Tyson - It was a pleasure meeting you at Listen to Your Mother. I am Lisa’s friend. While Connor did have an autism diagnosis, with therapy, he too is in this middle world. It’s a hard place to navigate at times, but you are an amazing advocate. WIth you in his corner, and the network you are building around him, you will find strength and courage to face it all. He is a lucky boy.May 5, 2014 – 11:58 pm
KIM CHATMAN - awesome BLOGSeptember 18, 2014 – 1:46 am
Kristi Campbell - Kim, For whatever reason, I don’t see the comments on this page as much as the recent posts but I wanted to say thank you so much for reading and for your sweet, awesome comment.November 1, 2014 – 12:01 am
Kim Conner-Chatman - From an OLD middle Mom: It is a hard journey. Schools are an issue,friends are an issue, therapies recommended then yet not covered my medical insurances and 2 bankruptcies later in 1998 and 2011…because he does not quite quailfy for Medicaid…Anyway..just wanted to let you now. My Conner will be 18 yo this December. He is a High School Senior this year. His myraid of diagnoses were/are ASD/Aspergers/Sensory Intergration Disorder/ ADD/Bipolar Disorder- I disagree with that label !!!/ and in 7TH grade discovered/added Narcolepsy. Conner is not a disrespectful kid overall..all those mean teachers assuming- he has a sleep disorder. Conner was able to ‘function” until about 2nd grade, then the poop hit the fan so to speak, so no early intervention for us. Like you I did all the right mommy stuff-best I could for he and his little sis..something was just not right..I had/have an atypical son. Yes I used to be devastated. And yes, I do not know WHAT exactly he will do next year..he’s not your typical college campus kid either..so still uncertainty there….but let me tell you the GOOD stuff…and I bet young Tucker is not much different. Conner and I are pretty close. He does not vocalize it much at all, now a man of few words..unless you can carry on a conversation about one of his “obsessions”. He knows his Mama fought for him. He knows his Mama loves him, and has his back. But he also knows if he screws up Mama loves him always , but there are real world consequences !! We have a special bond. They remember the things you do for them. He had learned to accommodate some of his less desirable sensory issues into more socially acceptable forms as he has matured. He holds down a little PT job..a grocery bag boy..but since he is not a big talker ..like the other kids there often are..he works…and the supervisors have noticed that admirable trait-all those social skills groups and now being a loner is admirable, how about those apples ?? Sometimes his underwear still bothers him..and he cannot get comfortable..and he gets frustrated..but it’s now at home..he controls it better..accepts his differences..and moves on. He DOES have 2-3 close friends. He is not friendless…less than his sis of course..but he is not that loner kid with NO FRIENDS I was scared of him becoming- his friends accept him for who he is ..understand his strengths…and they make it work. He is not dating – but does like “girls “..whew !! that’s a relief..but no rush there either. His monotone voice is quite humorous as it is a mans deep voice now..and some of the things he says w/o emotion can crack you up. So he may not move out next year. I’m ok with that. My health has taken a turn for the worst ..and he helps me now..well sometimes. He’s a BIG GUY…and hard to imagine same little fella I carried and birthed almost 18 years ago..and that newborn glorious smell, long gone too. So WHY am I writing this at 1AM. Middle is not easy..you nailed it..but being down that road..just like your 4 yr old who loves you fat and all,,its a blessing too. Thjngs will work out. Conner and Tucker too before you know it are going to be fine young men..and they have some AWESOME Mamas to be thankful for too. So pat yourself on the back..and give Tucker an extra kiss. Its gonna be ok Mama. Hang n there. KIM in GA September 18, 2014 – 5:35 am
My Inner Chick - Stunning, Magical, Heartfelt Photo.
It sort of touches the soul. xxOctober 8, 2014 – 12:13 pm
Kristi Campbell - LOVE YOU, sweet one!November 1, 2014 – 12:00 am
Marla Murasko - I am so happy I put a request out for special needs mom bloggers for my SpecialMoms Parenting magazine or else I would have never found your fabulous website. I love it.
I look forward to reading more of your wonderful posts about your little man. He is adorable and you are blessed as are we all.
My son is 8 years old with Down syndrome and he is my greatest accomplishment I call having him. Considering the journey we went through trying to get pregnant I feel so blessed that God gave me this amazing, beautiful baby.
Keep doing what you are doing.October 31, 2014 – 2:33 pm
Kristi Campbell - Marla,
First, thank you so much for commenting and for finding this blog! I know what you mean about the journey about trying to get pregnant and I also know what you mean about feeling so blessed with the children that we have. They ARE perfect in their own ways!!! Thank you!November 1, 2014 – 12:03 am
Ronele Coetzee - Hi Kristi,
I am a mother from Cape Town with a nearly 5 year old son Zach. I am so happy that I’ve stumbled upon your blog, Zach also has the some autistic traits, but not enough to be sure diagnosis. He has Apraxia of Speech and Sensory Integration disorder and he’s under going both Speech and Occupational therapy.
It’s good to know that we are not alone, we also get the typical, “but he doesn’t seem autistic, he seems “normal”” comments from family and friends. It’s difficult to explain to people so i have just stopped trying to, i just concentrate on getting him back to his happy medium when there is a meltdown or over stimulation. He spins, he lines things up, he throws things in the air, he loves circles and numbers and he is very sensitive to smells and sound. He is uncomfortable in crowds and runs and hides if i don’t keep a close eye on him when out to shops, play parks, huge family gatherings,and he can also be very aggressive, very stubborn and have HUGE outbursts. We stopped OT for a while to assess whether it is still necessary and will have to start with it again and there was definite regression.
All that said, you will never find a more loving, caring and compassionate child when he is in his own environment. He gives the best hugs, and kisses and cares deeply for his siblings. he has an acute sense of danger and will always try to keep his sisters safe and happy.
It’s amazing knowing that your blog allows us to share in your daily life and give us a sense of ” Not alone in Middle World”
Thank you very much for creating a sense of togetherness and understanding. i will continue to follow your blog and appreciate the opportunity to share 🙂January 12, 2015 – 10:10 am
Kristi Campbell - Hi Ronele,
Thank you so much for taking the time to tell me a little bit about Zach and reminding me that there are so many of us “in the middle world” and that what’s important is concentrating on helping them.
Explaining to friends and family can be rough especially when they keep saying things like “He will catch up.” I mean, maybe?? But what if not? Does it matter? Like you said, still amazingly awesome little kids, right?
Tucker had some problems with lashing out and being aggressive – he still has his moments but has made a ton of progress with keeping his hands to himself and knowing when he needs a break. A lot of what helped that was to pay him TONS of praise and attention when he was being gentle and kind and doing a deep NO when he lashed out and then walking away or saying “you’re out.” Happy to explain more if you would like but it sounds like you’re getting some help with therapy too.
I think Tucker will end up with a diagnosis of Apraxia as well – we’re up for a new evaluation this year and I’m already nervous.
Zach sounds awesome and again, I’m so appreciative that you took the time to reach out and share – thank you! I hope you’ll keep letting me know how your little boy (and you) are doing!!January 13, 2015 – 7:30 pm
Julie Jo Severson - Hi Kristi, I’m navigating through blogs of writers I’ve met lately because I’ve just started my own blog and learning how to go about it. Oh my gosh, you have more comments on your About page than anybody else I’ve seen so far. I just signed up for your finish the sentence Friday group. That sounds like a lot of fun, although I’m still figuring it out. Good work here!May 22, 2015 – 8:19 pm
Kristi Campbell - Hi Julie! I’m so glad that you joined Finish the Sentence Friday! Congratulations on starting your new blog – I so look forward to learning about you and you life there!! And thank you for your sweet sweet comment. It means so much to me that you took the time to reach out!May 22, 2015 – 10:15 pm
Katie Lacy-Brown - Im so happy I stumbled on this site, My daughter is perfectly in the middle. Its so hard at times and without any diagnosis people make all kinds of judgements. I cant wait to read all your posts my daughter too has a speech delay and I adore her way of speaking it feels like our own secret language. xxMarch 4, 2016 – 9:30 pm
Upasna Sethi - Hey Kristi,
I loved your Blog style and way you look at bright side of this world. You caught me.
A new follower.March 21, 2016 – 10:04 am
Cristina - Thank you so much for sharing your story! I am in tears as I read this. I have worked with children on the spectrum for many years. I’m a BCBA and have worked with hundreds of children with autism. I also have a 4 year old son who is the light of my world who happens to have a speech delay and in your words is in “the middle.” He has a speech delay, but he is able to speak in short sentences and phrases. He has delays with socialization, but he loves playing with his cousins and with me. He intiates interaction with others and enjoys spending time with others. He makes eye contact, responds to his name and has joint attention. He has so many skills that kids with “typical autism” do not have, but he also has some overlapping areas of difficulty. He is seeing a speech pathologist who has been working with him for the last yearemaining and a half and she agrees that he would not meet the DSM for autism. She thinks that he may have auditory processing disorder, but that can’t be diagnosed until he’s at least 5. I struggle with what to do at this point and if I’m doing enough. I started the process of having him evaluated with the school district and I was very disappointed in the Iep team. They did not try to get to know my son at all. The psychologist only observed him at school for one hour and never met with me, yet she wanted to qualify him under autism. There’s no way anyone could be diagnosed without ever actually interacting with them. After this experience, I felt that the speech, his preschool and my time with him (pretty much naturalistic aba all the time) were enough. Now I am questioning whether I should have his medical insurance refer him to an actual licensed clinical psych (not school psych) and then get him formal aba. I have just hesitated to have someone put a label on him for the purpose of getting treatment. I just don’t know what to do. It was very refreshing to hear other parents stories who are similar to mine. Thank you for this space and for sharing your life. How is your son doing now?July 5, 2016 – 3:00 am
Kristi Campbell - Hi Cristina,
Wow, your son sounds a lot like mine! Thank you so much for sharing your story and for taking the time to tell me a bit about it. I appreciate it.
I’ll try to address your questions in order:
First, I think you’re right to be disappointed in the IEP team. When my son was 2 1/2, two teachers came over (after Early Intervention had evaluated him and they were the ones who said “let me just say now, It’s NOT just a speech delay,” and I felt shattered. It was not Tucker’s best day and they weren’t very kind about it. Anyway, the two teachers who came over were amazing. They both took a lot of time getting to know my son, they sat on the floor and played with him, asked me what he liked, and were just wonderful. One of them is an ABA expert where I live and has championed PAC (preschool autism classroom) here for years. She thought it’d be the best fit for him even though I was like “I don’t know if it’s autism” and she said, “Ok, and that doesn’t matter.” and then explained ABA to me, asked me to try their school for two weeks, and now, 4 1/2 years later, we’re still in touch and I credit her to making Tucker speak in the first place and for potty training him!! (with her awesome staff). So when it comes to that part, my best advice is to push back. One thing I’ve learned through this journey is that YOU (and me and all parents) are truly the boss.
If your insurance covers it, I think it’d be great to get an eval although I will also tell you that my son turned seven yesterday (EEEP where does the time go) and we still have decided to wait for an official diagnosis for services. Here, they don’t need one in school until December of the year they turn seven (so we’ll be dealing with that once he starts second grade).
We do see a developmental pediatrician and she’s also said she’s been hesitant to dx him with ASD. She was right, although he’s still “right there.” Before kindergarten, he had a CARS test and scored a 27, so “middle world” for sure.
It sounds to me like you’re doing everything right. Honestly, the things that have given my son the hugest leaps aside from ABA when he was young have been unexpected. Like, he’s been in speech for 5 years almost now and it was a Tae Kwon Do instructor who got him to say “L” sound (not consistent but still a milestone taken when we’ll take it!) because to get his belt, he had to count to 10 in Korean and his instructor corrected him and BOOM.
He’s also become a lot more aware of his delays which is hard. Oh gosh, I type and realize I haven’t given updates about any of this on here in so long. I allude to these leaps in many posts but no longer focus on them because as he’s gotten older and is mainstream, I worry about a parent from his class stumbling here and making assumptions about his abilities vs. his disabilities but… anyway.
He’s doing pretty well now. We’re more struggling with new issues – like that he knows he’s delayed, and he doesn’t really “fit” anywhere – it’s hard but also amazing. It’s like leaps and bounds some days.
Also I’m rambling and am very happy to speak with you over the phone if you’d like. I won’t be able to this week but could next. If that’s something you think would be helpful (because even though I blog here, I leave a lot out for privacy), do the “contact me” button at the bottom (or on the side bar) and it’ll email me. We can talk more that way (and please know I may not be able to get back to you right away).
xoJuly 5, 2016 – 8:16 pm
Cristina - Kristi, thanks for writing back! Your blog has given me so much hope! Just knowing that there are other parents going through what I’m going through and that there is hope, gives me so much reassurance. I’m going to email you a few questions, but we wanted to say thank you here!July 14, 2016 – 11:15 pm
Kristi Campbell - I’m so glad that it’s given you hope! It’s really true that just feeling less alone is huge. I remember it being so for me. When my son was tiny, we “lost” a friend who didn’t want to deal with him and I truly felt so very alone. I’m glad that sharing our experiences has helped you to feel a bit less so. I look forward to your email! xoxo and I hope Friday is going well for you!July 15, 2016 – 8:05 pm
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Finding Ninee - Wow, thank you. I’m blushing and feeling unworthy and I thank you huge for the comment.
April 24, 2013 – 3:26 am
Hope Faith Love Always - You are most welcome!April 24, 2013 – 3:45 am
Kristi Rieger Campbell - Thank you so much! I appreciate it and always enjoy meeting parents who are in similar situations. We make our own community and without it, I would be lost at times.June 13, 2013 – 1:49 pm