Monday, 22 April 2013

Trust Your Inner Voice Mamas

I have mentioned before that I felt something was "off" with Jack from a very early age.  That I was poo poo'd, even laughed at for expressing this.  First time moms are not taken seriously sometimes.  But here's the thing- these kiddos have only one mama- and that mama pays more attention to every movement, expression, and achievement that child makes than any other single person on this earth.  First time mom's may not "know" that much about parenting, not technically, but the instincts are there, the gut feelings are there.

I wish someone had told me that when I was embarking upon motherhood, and a person or two may have even said something along those lines, so most of all, I guess I wish I had trusted myself enough to follow my instincts.  I mean, Jack started receiving early intervention at age 3- that's pretty early.  But by Nate- well he started at 18 months.  Granted he wasn't trying to speak, but still.

My rambling really does have a purpose.  Something I have long observed in Jack is that one of his eyes doesn't seem to focus, or track as well as the other.  I have mentioned it to several practitioners and friends/family over the years, and no one else seemed concerned, not the pediatrician or his therapists.  So I kind of let it go, because, once again, I'm just the mom right?  About 3 weeks ago, the head of his private OT program worked with him for several sessions because Miss Sam was sick- she mentioned to me that she noticed some issues with visual tracking, and of course perception (which is also a sensory processing issue).  She even mentioned that she noticed what looked like a "lazy eye".  I made note of it and planned to contact an opthamologist, but hadn't done so yet.

I had the OT portion of Jack's IEP meeting today as the OT cannot attend on Thursday.   It turned out to be a really really positive thing- mainly because we were one on one and more information was shared in both directions because of this.  Ironically, Jack's school OT is now working Saturdays at Jack's private OT practice, so he now runs into her there as well.  This is awesome because she is able to observe what Miss Sam does with him first hand, and she has been working with him since he was about 3 and can get him to do just about anything.  So we were discussing the assessment results, which on the OT front are pretty dismal- difficulty with prewriting strokes, many many sensory sensitivities, inability to attend, to interact appropriately and work with peers, just to name a few areas.  Then she mentioned that he seems to have the most difficulty with drawing diagonal lines, and that he doesn't seem to track very well with his eyes. That it's like his visual fields are off.

That made two people in the last month who FINALLY noticed something I have been concerned about.  My mom was at our house today and I mentioned the eye issue to her- her response?  "The right one??"  Sheesh!  Now I am freaking out, I should have intervened long ago.  What if his vision is causing some of his sensory issues?  What if he is having trouble writing because things are distorted?  I feel terrible.  So needless to say, we have an appointment with a pediatric opthamologist from Wilmer Eye Institute at Hopkins next week.  We need to get to the bottom of this. 
If this issue truly exists, it could be mainly two things:
amblyopia
http://en.wikipedia.org/wiki/Amblyopia


nystagmus
http://nystagmus.org/new/aboutn.php

Right now I think amblyopia (strabismic) sounds more likely.  Either way, we'll get it figured out.  And we can adjust his interventions appropriately. 

The lesson to be learned- always be the freaky mama who questions everything!  What's the worst that can happen?  You're wrong and look like a moron?  Who isn't willing to look like a moron for their kid?  I sure am, and have on many many occasions! 

1 comment:

  1. Hi! I found your blog off of Lost and Tired and would LOVE to to feature y'alls story on my new segment: Friday's Sweet Signs of Hope. My daughter Cali is four, almost five, and was diagnosed with autism two and a half years ago. I started a blog where I now have my Friday segment. The main idea is to feature stories of hope with relation to autism to help all other parents, grandparents, siblings, whoever learn to have a greater hope in their journey. Let me know if you are interested! Thanks. You can email me at chelsea@wheredidthebirdgo.com

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