Where to Start

While I write relatively openly about Eli and our lives, I try to keep some things private. You will never see his naked butt on any of my social media (though it is truly the cutest butt ever), you’ll not hear about potty training in great detail, nor will you ever see a picture of him sitting on a toilet. I have firm boundaries that are important to me. And this is one of those areas where if I didn’t feel like I needed some guidance, I would probably not share. But I do. Because I’ve never had a child before.

Eli has some…quirks. He’s always been a quirky kid, from infancy on. He had weird sleep patterns and weird eating patterns, but they worked for us and we rolled with them. He hated his crib with a passion of a thousand suns, and we rolled with it. But for the past 3-4 months, we’ve had a hard time rolling with things. All of this pre-dates our move, and though we have discussed the baby with him, I can say with great confidence that he has no idea what’s happening there.

A lot of it is normal toddler stuff, I know that, but other parts aren’t, and we’re struggling to figure out how to best support him right now, because frankly, we have no idea what we’re doing.

The first thing we noticed was the lining up. I know, I know. Lining things up is NORMAL. It’s a normal stage, it’s a good thing, it demonstrates good spatial awareness, as does the sorting. These are all true and I know it. And if he was just lining things up, I wouldn’t even mention it. But it’s not just lining things up. It’s spending hours lining things up and freaking out when they don’t stay, or when the space isn’t quite right, or when it’s time to clean up, or if, God help you, someone touches the line. When it was just cars, I was not terribly worried, but now it’s everything. It’s balls, it’s chalk. Last week at soccer, he lined up all the extra cones and screamed when someone dared touch one.

And I was less worried when he was playing with cars typically in addition to the lining up, but I have scarcely seen Eli drive a car on the ground or do anything with them other than line them up lately. I just have this weird prickly feeling about it and as much as I want to dismiss it, instead of the behavior fading, it just seems to keep escalating.

At the same time, he’s social. I mean, unbelievably, undeniably, loves to be the center of attention social. He’s his dad. He smiles, he hugs, he gives kisses, he makes eye contact, he talks in multi-word sentences that are mostly intelligible. He does all kinds of cool stuff. Our pediatrician gave us an autism screening tool and we had several concerning areas but the doctor said that Eli’s social skills are so astoundingly appropriate, that he didn’t even want to refer him for anything. Which was like 10% comforting and 90% confusing as all hell.

The big thing is that he’s struggling with is play. He has these rigid rules about things. Today he was playing with play dough with his cousin and I spotted the problem from a mile away, well before it began. My sister was rolling play dough into small balls and putting them on the tops of the play dough containers and Addie was taking the balls and squishing them. You know, playing. Eli came in and I knew the instant he saw the play dough that he was going to freak out because he could not deal with Addie taking a ball. Not like, he wanted it and was being possessive and she took it, but because then one container didn’t have a ball on top. And he screamed and cried. Not like cried because something had been taken away, cried like he couldn’t function. Couldn’t stop crying, was beside himself and unable to be redirected in any fashion. Just an absolute mess (this after a 3.5 hour nap).

And it’s not the first time it has happened, it’s not the 10th time it’s happened. All I want for my child is for him to be successful at what he chooses. I want his life to be easy in the sense that he can achieve what he wants without any unnecessary struggles. I want him to have friends and enjoy school and activities, but the way he interacts with his peers makes that a huge challenge.

And again, he’s a toddler. They’re rigid, I know that, it’s just, he seems to always be noticeably more rigid than his peers.

The last thing that has given me the greatest pause is his sensitivity and what seems to be coming out as anxiety. He has always struggled with loud noises, literally for as long as I can remember. We can’t run a blender, vacuum, dust buster or anything of that nature without him hiding or running and crying. The tape we used to close boxes scared him every time. Motorcycles that are a huge distance away terrify him. Public bathrooms (toilet flushing and hand driers) are an absolute nightmare. And okay, fine, he’s sensitive, we’ve known that for some time. For a few months now, when something scares him, he’ll say “you’re okay! you’re okay!” in a quiet high pitched voice, just to himself, as if to calm himself down (the wording he got from us). And for a while, it made perfect sense.

It doesn’t anymore. There are times where there is no stimulus we can spot that is making him uncomfortable, but he’ll start sort of panicking and then we’ll hear “you’re okay! you’re okay!” several times. It will happen when he’s otherwise happily at play, in the car, in his bed, basically anytime. Like he’s constantly reassuring himself that he’s okay. And it breaks my heart because no 2 year old should need to comfort themselves 20 times a day when they’re playing safely at home.

And I’m just…I don’t even know. It’s something I don’t know how to deal with. I don’t know how to help him. I don’t know what he needs. We could have him evaluated by the Regional Center, but our local one is terrible and he doesn’t have delays in other areas and likely won’t qualify for anything. We could go to a developmental pediatrician or a psychologist, but I don’t know if that’s unnecessary and if it’ll just freak him out more. I just don’t know.

I don’t know the difference between normal toddler rigidity and all of this, if there is one. I don’t know the difference between being a sensitive kid and this, again, if there is one. I just don’t know. And I feel like in doing nothing, I’m potentially failing my child, but I feel frozen and unsure of what to do for him. It’s not denial by any means, I know some of this stuff is probably not typical, I just don’t know how to go about managing it.

I love this boy more than anything in the universe. He is the most lovable incredible boy, he does so many great things and he is my favorite person on the earth. All I want is for him to be happy and successful. I just feel like I have no idea anymore how to provide that for him with the things that are happening.

So, this is sort of a half-hearted request for suggestions or experiences or reassurances. Please know that it’s sort of a tender situation for me, so handle with care.

24 Responses to “Where to Start”

  • Oh lady, I’m sorry you’re so worried. I think you should get him to a developmental ped soon, for your own piece of mind, and my guess is, it won’t freak him out more because they are skilled at dealing with and seeing all kinds of behaviors. All of the escalation might be related to the big changes going on and while he doesn’t know what’s coming with the baby, he knows something is up . But either way, you’ll feel so much better after you’ve seen someone. xo

    [Reply]

    Katie Reply:

    @Tamara, I know that I would, too. I sort of don’t know where to start. The other issue we have is that all the neuro people know my husband, which makes it very hard to get any sort of objective assessment done. I’m thinking maybe waiting until at least July, when not everyone at the new hospital will already have an established relationship with our family and we might be able to get a better assessment (I love our current doctors, they just tend to defer to what my husband wants).

    [Reply]

  • Cheryl:

    Oh Katie, this sounds so hard. I would maybe see the developmental specialists because it might be enough to reassure you or it might be early enough that it is something dealt with in a way with minimum impact. Other than that I can only say to hang in there, and I pass on hugs and kisses to you all, xxx.

    [Reply]

    Katie Reply:

    @Cheryl, Thanks Cheryl. I need to look into a neurodevelopmental something or other. Such unfamiliar territory.

    [Reply]

  • Crysi:

    I swear, you could be describing Leia at age 2. I was so worried and concerned because she was NOT like her sisters, especially her twin sister. I asked her Ped who wasn’t particularly concerned, but she referred us to our local intervention place for a screening. The lady came, worked with Leia for about an hour, watched her interact with her siblings & determined she was lacking in some areas, but not the ones that would qualify her for intervention. She’s now almost 5 & ready for kindergarten next year, but I still worry. She’s got a great imagination, does wonderfully playing on her own, but craves other friends, but things have to go HER way. She lines things up, sorts everything, hates getting dirty, and is absolutely terrified of loud noises. She was very late to potty train because the idea of the toilet flushing terrified her.
    It can be so scary. I know going to preschool & socializing with other kids really helped Leia. She seems to do well at school, even if she still shows signs at home, but I do worry about next year. I still think of her as incredibly sensitive. I also often hear her say “it’s ok” to herself. She is also my total snuggle bug.
    I hope you can find some answers.

    [Reply]

    Katie Reply:

    @Crysi, I’m hoping that preschool is similarly helpful for us. We’re doing Montessori this year (not because I’m super into the philosophy, they just had the hours, staff ratio, play equipment and flexibility we needed), so we’ll see if their very flexible style helps my very rigid toddler relax at all. I really worry about the friend aspect. He LOVES other kids and wants so badly to play with them, but just can’t let go of these rules he has in his head and it’s so hard to watch.

    [Reply]

  • Christine:

    I think you should think about taking him to a neurologist/psychiatrist (as in them being only one doctor) just to see if the head injury has anything to do with it and so he/she can see if there is an underlying anxiety
    Issue. You’re a great mom, kids are unique and it’s obvious how much you love Elijah

    [Reply]

    Katie Reply:

    @Christine, Thank you. Our neurosurgeon told us we’d never really be able to pinpoint what was caused by the head injury, but it’s a good point and definitely something we shouldn’t probably dismiss. Especially since it was his frontal/temporal lobes, which are pretty intimately involved in personality and such.

    [Reply]

    Ashley Reply:

    @Katie,
    I was also going to suggest requesting an assessment from a child psychologist/psychiatrist instead of seeing a developmental ped since it sounds like he’s hitting all his developmental milestones just fine. Definitely does not sound like Austim in any form of severity to me.

    [Reply]

  • I agree with the suggestion to go to a developmental pediatrician. And I read some of the things you describe and it takes me back, because my gosh, that was us 15-16 years ago.

    My son is an ‘alphabet soup’ kid, meaning there are a lot of letters that he’s earned in diagnoses (Asperger’s Syndrome, OCD, SPD, ADHD, Dysgraphia, and more). Other than the ADHD (which really isn’t accurate), the developmental ped was who figured out a lot of what was going on.

    Eli doesn’t sound like he’s on the autism spectrum at all, but he does sound like he should be evaluated for OCD and sensory processing dysfunction. OCD because things have to be a certain way and he flips out if they’re not. SPD because he reacts so strongly to sensory input.

    Other things to look for with SPD: does he hate having clothes taken off or put on? My son used to tell us he didn’t like the air breathing on him. He’d pull at the collars of all his shirts because he didn’t want anything near his neck (couldn’t use any shirts as hand me downs until we realized this-he could step through the neck by the time he was done). N is mostly sensory avoiding, but there are a few cases where he is sensory-seeking (he loves to be cocooned in a beanbag chair, for instance).

    The toilet flushing and loud noises? Oh yeah, been there. My son refused to use public bathrooms for years. We traveled to Disney World 2-3 times a year and I tried ear plugs-which helped a lot. Vacuuming was done when he was sleeping or out of the house.

    If you want to know more about SPD, I suggest reading The Out of Sync Child and get the follow up The Out of Sync Child Has Fun. Both will help you to identify if this is something to address with the doctor and give you some strategies if this is the case.

    Hang in there. Big hugs to you, because you are NOT failing Eli in the least by being aware of potential issues that can be addressed.

    [Reply]

    Katie Reply:

    @Suzanne, OCD has been my worry as well, but all my research says it’s too early to diagnose that and that all toddlers have OCD, which is probably true on some level, but Eli seems more concerned than his peers. I absolutely haaaaate the fact that my 2 year old is noticeably anxious (I mean, he comes by it honestly, but still). He seems to be primarily sensory avoiding, though he does love vestibular input (swings, sliding, falling over, jumping, etc), so there’s some seeking in that realm as well. I’ll definitely look into those books. Thanks for the recommendations.

    [Reply]

    Suzanne Reply:

    @Katie,

    The anxiousness is why I say possible OCD. And my son comes by it honestly, too. (Husband worries when he doesn’t have something to worry about, which he got from his mom).

    People started pointing out things with my son around 4, but really, we saw them earlier. Our pediatrician kept pointing to his Denver scales looking good and probably thought we were neurotic first-time parents.

    And like Psychmamma says, if you need an ear, you have me on FB-just send a PM. (Suzanne R-M)

    [Reply]

  • GIANT HUGS!!!

    We have a kiddo with a lot of anxiety + sensory processing issues, and a lot of this sounds VERY familiar. I would highly recommend an evaluation by a neuropsychologist and/or a developmental psychologist (not just an MD ped).

    Sending you heaps of love & good wishes. Feel free to PM me at Facebook anytime.

    [Reply]

    Katie Reply:

    @Psychmamma, Thank you for the recommendation. It’s amazing, I’m married to a neurologist and I didn’t even know half these specialists existed. I think we’ll wait until we get into our new healthcare system because everyone at our current hospital knows my husband and tends to either only talk to him or to defer to what he wants to do (which in this case is stick his fingers in his ears and pretend it’s not happening- he notices the behaviors too, he’s just too scared to know what to do), which just doesn’t feel objective enough to me.

    [Reply]

  • (DawnDetweiler at Facebook)

    xo

    [Reply]

  • I think you’ve gotten great advice in the comments so far, and I don’t really have anything else to add. But I wanted to out my support out there and tell you I’m thinking of you and Eli and hoping you get some answers and peace soon.

    [Reply]

  • Kimybeee:

    The first thing I thought of is he, for lack of a better word, mimicking some of your anxiety? I have no experience with this at all, but I have been following you a very long time and I know anxiety is a huge struggle for you.

    I see my 20 year old daughter repeating a lot of my anxiety habits that I had before meds and some other medical interventions. So far she hasn’t been paralyzed by them like I was. I know they are subconscious too, not contagious.

    My kids were toddlers so long ago, but I don’t remember either of them being scared of noise or some of the other stuff. My son was painfully shy till about first grade. He had potty issues, but I think most boys do.

    Keep us posted! I will keep Eli in my prayers!!

    [Reply]

  • I think I wrote this exact same post about Luca a couple of years ago. The loud noises, etc. I was sick with concern – my husband not as much. Two years later and he is still not super fond of loud noises, but he can go to the movies – and loves it – so little by little. I think now it’s easier because I can warn him and talk about it. Anyway, let me dig up that post I wrote and send it to you. Of course, no two situations are the same – but luca has gotten over most all the things I was freaking out about. May put you at ease a little. I know that prickly feeling. xoxo

    [Reply]

  • Christy L.:

    I would also recommend going to a developmental pediatrician or getting an evaluation. A lot of what you describe seems relativley normal to me, but if you are worried it is better to evaluate than not. Early intervention is so important, and I would hate to not err on the side of caution, just in case something is going on. I don’t think it would freak him out… Usually they are experienced at dealing with young ones in a non-threatening way.

    [Reply]

  • Jodi:

    Katie,

    Just a few thoughts w/ my background! Continue to keep detailed notes of as many of these situations as possible! You know the drill; who, what, where, etc.! Also, document the length of time these things last; maybe you’ll pick up on a pattern? See if his day care provider can do the same! I know E is not her only child but the best she can!

    If possible, (video) record some of these things! If you know it’s going to happen (as you did w/ Addie) get documentation that way as well!

    Eli seems to be able to self sooth which is great! He seems very bright & perhaps you & Dad can talk him through some of this; if & when you feel it’s appropriate!

    You can seek out a play therapist! This could be very beneficial! It might provide some additional insight!

    It would be good to get some things in place before his baby brother is born (when’s your due date)? I know he’s going to be an awesome big brother but no matter what you do this will rock his little world! But you and J are such great parents and love this little guy w/ every fiber of your being you will love him through the tough times!

    Email me personally if you want more info!

    Take care of yourself!

    [Reply]

  • Oh, how stressful! I don’t have much personal experience to draw on, except that Eliza does the random self soothing thing too, just as some anecdotal data for you. She chatters to herself quite a bit, and I often hear “you’re ok, you’re ok” many times a day. Obviously she has also parroted the language from us, and I think because I tend to say that a LOT – whenever a kid squawks, because I’m basically telling MYSELF to be calm and chill (I hate loud noises, so you know…. kids), Eliza just says it all the time. I don’t think it’s necessarily and anxious thing, for her (or me for that matter). So, I don’t know, this is me, hoping it’s no big thing for Eli, either. Xoxo.

    [Reply]

  • My offhand guess is that it sounds way more like anxiety with a touch of OCD than autism. Especially since his social skills are great (and since the focus is on lining things up/order, not on obsessively learning about and playing one thing). Also, toddlers.. And kids with diffrent temperments. Toddlers always want things their way and have lots temper tantrums (which is *not* to say that you shouldn’t listen to the prickly feeling you have that someone is off- just that maybe whatever it is is being blown to bigger proportions cuz he’s an ornery toddler wanting things his way, as many toddlers are).

    Also, the fact that he’s doing the “you’re okay” thing is partly in a way wonderful. It sucks that he feels stressed that much, if that is what’s causing him to do it. BUT it shows he has really good skills (that you have taught him) to self soothe and deal with the feelings constructively. A lot more than many kids or adults can say! And a good sign for resilience and dealing whatever it is by drawing on his own resources that you’ve taught him, which will help him out in general in life, including/especially if he has anxiety or other issues to deal with.

    [Reply]

  • Erin:

    I am an occupational therapy student and one thing that comes to mind is difficulty with sensory integration/processing. Your son has met all his developmental milestones thus far and it sounds like he has above average intelligence and good social skills. To me, the sensitivity to noises is a red flag for sensory processing disorder. I’m not sure what resources are available in your area, but I do know that a pediatric OT can evaluate your son to determine if he has sensory processing disorder, as well as provide treatment. Some pediatric OTs focus more on sensory stuff than others. SIPT (Sensory Integration and Praxis Test) certification is also good to look for in a pediatric OT. Some helpful books:

    The Out-of-Sync Child by Carol Kranowitz
    Sensory Integration and The Child by A. Jean Ayers
    Sensational Kids by Lucy Jane Miller

    The following website has great information and additional resources:
    http://www.spdfoundation.net/index.html

    You and your husband are wonderful parents and your love for your son is so evident. I wish you all the best!

    [Reply]

  • Kristi:

    I highly suggest that you get Eli evaluated. You will feel a lot better once you do.

    [Reply]

Leave a Reply

Welcome!
I'm Katie, a 30-year-old, wife, mom, former teacher-turned PT, who also had brain surgery in November of 2007. This blog chronicles my daily life, from mundane to crazy, often with far too much detail. Sit down, get comfortable and stay for a while.
Social Media Links
RSSTwitterFacebookpinterestinstagram
Email
overflowingbrain@gmail.com
Categories
Previously…
BlogHer Reviewer