Just Punch Me in the Gut, Why Don't Ya?

Things have been pretty good around here lately.  December brought one sick day after another, but all in all, things are good.  On average, Logan has calmed down an awful lot, between his weekly Occupational therapy, his new diet and the homeopathic remedy we have been using.  And I've adjusted more to our new routine and am not feeling quite so overwhelmed with having to juggle numerous therapy appointments a week on top of work.

But just when you think that your kids are doing so well, you get news from yet another therapist that makes you feel like you've been punched in the gut.  Again.  Sort of like I felt when I wrote this post here.

This past weekend, Chloé's physiotherapist recommended that we ask our pediatrician for a referral to the Developmental Progress Clinic at the Children's Hospital.  She didn't specifically say why, other than to comment that Chloé wasn't progressing as she would expect.

When I probed further, she responded that, because (a) she wasn't progressing as expected in her gross motor skills, despite weekly physio over the past few months; (b) she was diagnosed with a sensory processing disorder very young and (c) she seemed to have some significant digestive issues (she is now on a 9+ month long waiting list to see a gastroenterologist), she felt it was best that her overall development be assessed by a specialized, multidisciplinary team.  

This response is usually therapist speak for "I think your child has (fill in the blank), but I can't tell you what I suspect because that's not something I'm trained to evaluate.  But it's what my gut is telling me". 

I know this because this is the exact same speech that I give every time I refer clients to this very same clinic.  The kids I refer to this clinic are kids who I suspect have severe issues that will persist despite therapy.  The kids who are autistic, or have a global developmental delay, or some other type of disorder.  This is the speech we were trained to give to clients when we were students, since we aren't allowed to say, "I think your child has x".

Punch me in the gut alright.

I'm perhaps unlucky enough to know what this type of a referral means, while also being lucky enough to know a fair amount about the disorders that are diagnosed at this clinic.  I am not concerned that she is autistic, as her early communication skills seem age-appropriate to me.  I'm also not terribly concerned that she might have a global developmental delay, as this is a general intellectual delay and she appears to be ok cognitively.  I'm maybe not objective because I'm her mom, but I'm really not overly worried about either of these things.

But obviously, our therapist is making this referral for a reason.  I just don't know exactly what she is suspecting or concerned about. 
 
Just like when Chloé's last physio told me she had actually fallen further behind, despite therapy, I had that split second thought that maybe, just maybe, she would be progressing as expected if I had just done more.  But let's face it.  I know that I've given 150% of myself to helping my children overcome these needs.  This is not about me and what I have or haven't done.  This is about them and their underlying neurological development.  Which is apparently a bit slow.

For me, the most difficult part of dealing with something like this is not so much the fact that my children are delayed and all that this entails.  What makes it the most difficult is having to listen to every second person tell you that you're overreacting and that there is nothing wrong with your kid.  If I had a nickel for every time someone has said or implied something like this, my children would have the resources to benefit from unlimited therapy for life. 

If you start your sentence with the words "I'm not a professional but...", you should probably just stop right there.  You see, you've already summed it all up.  You're NOT a professional.  So the suggestion that I should consider your opinion with at least equal weight to the opinion of the professional who is seeing my child...???  Well... even you have to admit that that's ludicrous, no?  

Oh wait... I forgot... you have your own child and he/she did everything exactly the same way my child did, never saw any professionals and they're completely fine today, right?  Or, maybe you don't have your own child, but you've actually just seen a child, somewhere, and you feel that that gives you equivalent credentials to our therapist, correct?  After all, all of those crazy therapists just exaggerate everything anyhow, right?? 

The thing is, I'm not only the mom of two delayed children, I'm also one of those therapists. Yup... those crazy therapists who think there is something wrong with every child who enters their room.  So it's kind of hard for me to not believe them when they bring up concerns.  Because it pretty much invalidates what I do every day for a career.

Let me explain to you, as a therapist, how we determine whether or not a child is falling behind on developmental milestones.  Tests are developed that evaluate large samples of children (i.e. maybe 1000+ kids) to see at what age most kids can do a certain skill.  When a large percentage of the kids (approximately 85%) have mastered a skill by a certain age, it is considered that the other children are delayed in this skill.  This is all about statistics and I'm not going to go into any more detail than that.  But statistically, these other children are delayed.  They're not just low average, because it's the bottom 10-15% of the 85% who are low average.  I'm happy with low average.  I would not take my child to therapy for being low average.

In order to conclude that a child is delayed, we don't look to see if they are late in just one skill.  Tests evaluate a multitude of skills and then, we compare the child's average performance (i.e. not on just one item) to the average performance of a child of the same age.  And that's how we can tell who is delayed.

To put this into more concrete terms, a 14 month old who is not yet walking, but who has mastered all other age-appropriate global motor skills (i.e. standing, creeping, being able to bend to pick up toys without holding on, walking while holding mom's fingers, going up stairs, etc.) is not considered to be delayed.  However, when all of these skills (and more, in Chloé's case) are delayed, we can conclude with confidence that a delay is present.

Now, I know that these people who keep telling me that my children are fine are actually all well-meaning.  That they are only trying to reassure me.  They want to make me feel better and encourage me that my kids are really just fine.  I know that, when it is family, they are maybe dealing with their own denial or anxiety issues to this and are trying to convince themselves that there is nothing wrong.  But what my sister and I both hear is "You are being foolish to listen to these professionals".  "You are overreacting".  "You are wasting your time and money running to therapy.  Your kid is going to be fine regardless".  "All of our kids were the same and we handled it fine.  What's wrong with you?".

I actually don't even need to be reassured.  Although this referral to the developmental clinic definitely concerns me, I am not a major ball of anxiety, fearing every second of the day what the future holds for my children.  Do these thoughts ever cross my mind?  Of course.  Did a cry a little bit when the physio left yesterday?  Who wouldn't?  But I'm able to put things into perspective and feel reassured that my children will be ok in life, whatever the future holds for them.  I'm still able to sleep through the night (or, at least, when my kids will let me, lol!).

Telling me that there is nothing wrong with my child does not help.  Sometimes the simple words "wow, that sucks" can be just what we need to hear.