Toddler with OCD

Not Just “Picky”!

Yeah, I know what you’re thinking, “C’mon-all little kids go through phases-quit ‘diagnosing’ the poor little thing!”  Well, this stuff was way too consistent and lasted just way too long to be a phase.

First of all, we figured the same thing in the beginning.  There were just gobs of “phases” and “picky habits” racking up, taking up more and more of our days,  that we finally had an answer for when she’d been formally diagnosed at 3 1/2 yrs. old.  The rule of thumb we heard AFTER she was diagnosed was that if more than an hour of your day is affected by rituals or sequencing, you should seek help.  Of course, by the time she was 18 months or younger, there was barely an hour of our day that was left unaffected.  We were really glad to hear our pediatrician acknowledge that this wasn’t a “phase”.  We’d had some pretty rough days and evenings with this troubled little dolly and she needed someone besides her immediate family to take her issues seriously.  I started reading every OCD book I could get my hands on.  At the time, there weren’t many on toddlers  with OCD.  Now, the professionals have acknowledged that OCD has no respect for age.

That’s probably the saddest thing I can see in all of this.  These troubled little toddlers have so much going on in their heads and when people just keep explaining it all away as a disciplinary issue, or for whatever reason, and won’t confront it, it’s just a tragedy.  Sometimes (often) you take criticism from family and friends for acknowledging a “disorder” in your child.  But your child is all that matters, and once you’ve turned that corner, you can take steps to help her/him.

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Adolescent Onset is More Common

A Friend’s “Short” Story With a Happy Ending

I was talking with my friend this weekend and she was sharing with me about her son who, at around 13, experienced a sudden onset of OCD symptoms.  I know adolescents with OCD are quite a lot more common than the younger, infant-toddler “variety” we saw.

Basically, he woke up one day and had to “check”.  I think she said light switches were his main issue, but he had other classic symptoms as well.  She’s a teacher and did all the research she could as far as behavioral therapy.  She said they did everything they could to help him work through each individual symptom and over the next year or so, he had licked his OCD!

Now, I can honestly say that this is the first time I have ever heard of anyone actually kicking their OCD in the course of one year by working with their child on each symptom, but who am I?  I’m just a mom, as I’ve said all along.  I sure do wish it would have been that easy for my daughter.  I don’t mean to imply that any part of this was easy for them, as I know that nothing about this disorder is easy for anyone involved.  I’m truly thankful to hear that anyone could help their child learn to manage their symptoms and move forward.

Through the early years, I read everything I could get my hands on, as she did when her son was diagnosed.  Maybe he was not genetically predisposed as so many are that have so much on-going trouble.  I do know that he suffers from ADHD, so there could have been other issues at play.  However, thankfully, now  OCD will not be one of them.  He’s such a great kid, and incredibly talented.  I’m anxious to watch him move successfully through life!

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Yup, It’s Hereditary!!

The reason I can speak with some level of authority on this topic is that I have many a memory from my own childhood of counting the strokes on my bicycle to make sure they came out even, and having to back up to fit in another stroke if  I was going to land on an odd number (preferably with my right foot).  Also counting telephone poles between specific areas as they passed us on car trips (exhausting, but completely necessary).

There were many others throughout my childhood that came and went, but were left unaddressed, because nobody talked about such things.  Plus, we didn’t have a name for it anyway.  As it happens, my mom had many symptoms herself!  We’ve talked about it many times and laughed about our similar counting rituals, etc.!  It’s that itch that needs to be scratched thing.

I’m so thankful that, as a parent of  a kid with OCD, I know that feeling.  I know how you feel in public when you feel like you have to sneak whatever it is you need to do so people won’t think you’re totally nuts!  I know the feeling of being so hyper-sensitive to other peoples’ lack of manners that you literally cannot focus on what they are saying.   I know how desperate you feel when someone chews their gum with their lips open so you can hear every little “crackle” and “pop”!   Yes, OCD is definitely hereditary!!

I am thankful that my OCD was never severe enough to have been noticeable by anyone else.  I was able to manage it by myself, without help, through adulthood.  I have to admit that I have benefited as well, through these last 16 years by my daughter’s various doctors and all the materials I’ve read through the years.  Through it all, I’ve watched as she’s learned to deal with various symptoms and talks to me so openly.  She has taught me a lot about strength of character.

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A Mom’s Overview of OCD…

I’ve decided to give something of a chronicle of events from my experiences and how things unfolded with our family. Please feel free to comment as we go. I know our experience may seem somewhat unusual, but it might help someone identify similar situations going on in their family, that are yet to be identified.

An Overview of the Disorder Itself (From a Mom’s Perspective)

Childhood OCD, like OCD in general, waxes and wanes. In little kids, when it’s on an upswing, it’s easily identifiable. They will have a short fuse, become hypo-manic, “tornadoing” around the room, getting “stuck” till things can happen in the “right” way to meet their criteria-doing things over and over till it “feels” right (we called those “do-over’s”). They get impatient with exterior sources of triggers of their symptoms, ie: light switches on or off, cabinet doors ajar, food touching on their plate or sandwich cut incorrectly, blanket folded wrong on their bed, etc. They are often very creative and LOVE doing art projects, but are so critical of their work that it can devastate them for hours, making daycare and school difficult. Our daughter learned early on to dislike coloring because it made her “tummy ache” from worrying. They never believe their work is as good as any other child’s, and tend to fixate on that as well.

There are so many facets to this disorder at every age and level. I’ll get into the school stuff later on.

Please keep in mind that I’m no expert on the subject.  I’m just a mom who’s done her homework and found virtually no help for the really young children with OCD.  We even tried to start a support group in our area for parents of kids with OCD and accompanying disorders (comorbidities).  More on that later as well.

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Medicate my child?!

It’s one of the toughest decisions you will have to make in your life-time, and certainly nothing to be taken lightly. It’s a last resort, and only you and your doctors can know when, or if the time is right to implement this kind of treatment–When you can tell that your child is truly suffering when the rituals cannot be carried out “correctly” and he/she cannot move forward with the rest of their day till you start over at the beginning and follow-through to the end in “proper” sequence. (Lots of “do-over’s”)

The mere words sound abusive. It’s as if you’re taking the easy road and just don’t want to bother with “parenting” your child. That’s the way many people in the media, well-meaning friends and family, and yes, sometimes even those voices inside your head make you feel. It seems so permanent and as if you’re meddling with the brain chemicals God gave your baby.—BUT, here’s the deal: Sometimes stuff just goes amok with our bodies, even children’s. Ask anyone with a child with diabetes or any other more tangible condition or disease. They wouldn’t think twice about giving their child their insulin or other appropriate medication. I guess some reasons why people can’t seem to wrap their brains around medicating children for these mental disorders is that; A- some schools have taken on the role of doctors and have recommended medications for some students that haven’t been formally diagnosed with ADHD and apparently enough parents have “caved” on it “to possibly calm their kids down” (?) and pushed it through with their pediatricians, and this has caused such a negative public opinion; B- The fear of messing with the brain chemicals in general-(not to be taken lightly by any means); C- Dosing issues can be troublesome. But, these doctors are geniuses! When our daughter was a toddler, he had us crush her pill and add it to a little juice for her to drink each morning. When she got older, he had her practice swallowing orange flavored Tic-Tac’s; D-Criticism.  And yeah, this is just unavoidable. What people don’t live with and deal with day-to-day, they just aren’t going to fully comprehend. Plain and Simple.   We just got used to the looks people gave each other.  If you’re in a situation where you need to share things with them, then you will develop a thick skin over time.

Early Cognitive Behavioral Therapy

Not being a doctor myself, just a mom, I do need to say that behavioral therapy, or cognitive behavioral therapy (CBT), when children or teens are old enough is really important too. Have your doctor recommend someone that they think your child can really connect with and specializes in OCD. There are incredible clinical psychologists out there that are truly gifted at working with these very special kids.  They are used to working with these disorders and with children, so when you and your doctors think you and your child can benefit from learning some new “tools” to manage symptoms and rituals, by all means, schedule that appointment!  If you don’t get the feeling that your child “connects”, it’s ok to check around for another specialist, too.

I remember scheduling an appointment for myself with the psychologist when my daughter was very young, just so I could learn how to help her.  He’d already seen her a few times and knew how to help me help her.  Boy, was that ever valuable time spent!!

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In the Beginning…

Well, since this is my first attempt at cyber-support, let me just say that if I’d had this forum available to me about 13 yrs. ago, I’d have felt mighty lucky!  My daughter is now 14 yrs. old and has, as I mentioned in my “About Us” info, come a long way in managing her OCD.  She has also been diagnosed with ADD, which is a commonly related disorder.  Thankfully, both treatable, as we discuss frequently.  I sure hope I’ll hear from other parents of kids in this same boat.  There was a time that we attempted, through her dr. to assemble a support group with real humans.  It was very difficult to keep going for a variety of reasons.

I’m here to tell you that there are very young children out there that are mis-labeled as “spoiled”, or have been disciplined for the same behaviors over and over, when you can see that they simply MUST have something else going on.  The onset of OCD is most certainly possible in as early as the first year of life.  Our daughter was still in her high chair when we started becoming aware of symptoms (around one yr. old or less).  There was so much going on in her little head and you could read it on her face.  We just didn’t have a name for it till later…

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