Easter 2014 BEST Upclose Looking forward SNAG-0003 SNAG-0001

On our recent trip, we were able to meet with her Neuropsych Physician and get the results of her testing.

Now, before we get into the results let me say this (hoping again, to help help out other mommas of children with special needs) we were widely discouraged to test Rhema “this early” as she is only 3 1/2 years old.  We were told by multiple physicians that it was “too early” and that “they could not even get an accurate score or reading.”  Well, duh!  We knew that we might not get much but whatever we could get, we need!

Pardon my not-so-brief rant, but I think it is a difference between someone, well meaning or not, expert or specialist or not, who is exposed to your child a few times a year (or once a week) and then us (her parents) who are with her 24/7- 365!  Even well meaning educators and specialists look at us sideways sometime — as if they know more about our daughter than we do.  I always have to bite my tongue to keep from saying, “Tell me in all your years of college, how many classes did you take on “Rhema”?  Yes, you have a degree and I am so thankful you are qualified to be of help to my daughter, but how many classes did you take on JUST Rhema?  Because we, her parents,  have a PHD in Rhema so YOU need to listen to what WE are saying and do not brush off our input because we are, in just your eyes, just “Parents.”  We chose to get Rhema testing as early intervention into her cognitive development.   Even, in the NICU, when she was just days old, we had a physical therapist coming to her bed and stretching her feet, legs in preparation for mobility.  We also had her in the care of an OT, in the NICU,  where she would wear double thumb-stretching bands so she learned to keep her thumbs out in preparation for her learning to write one day.  All of this was under the guise of “early intervention” for her body.  So what about her mind?  Why should we wait until the advised age of 5-6 to begin “early intervention” with how she learns and only then, begin to address any delays she has?  Yes, of course, by the age of 5 or 6 she will much easier to “test” and “score”, but by then so many years have already passed.  After much prayer and based on our daily experiences with her, we felt to get her tested was in her best interest, despite the advice and disapproval from some of her medical team.

Also, we’ve seen an increasing tendency from some of our well meaning therapists and educators to want to label Rhema as “defiant”, “stubborn” and/or “disobedient”.   Now, know some of you are thinking it….. we are in denial, right?…. so let me address that too…….. We are under NO delusion, we know that Rhema is, on occasion, disobedient and stubborn.  What 3 year old isn’t?  And, hey, she’s momma’s kid and since that is true, I know she’s got some “stubborn” in there! LOL!  I would be delusional if I did not admit that! LOL!  But we, her parents, are with her day in and day out and we’ve felt there is something more going on here than simple stubborn behaviors.  The search for that “something” is what drove us to get her tested, albeit, “early”, in some folks opinion,  in the hopes of getting some answers.  Also, at the same time, testing now establishes a baseline to compare to when she is retested at age 5 or 6.  Plus, ultimately, we have hopes of stopping the inappropriate labels of “stubborn” and/or “disobedient”; our gut tells us that there is more going on than age-appropriate stubbornness.

What were the findings then?  As we predicted, there were some clear “cognitive processing issues” detected.  Now, there is no way to score or even identify the exact issues, however, we now have evidence of a breakdown happening with the auditory information she receives getting from one side of her brain to the other, in a timely manner.  Her Neurophysc physician and his clinician both witnessed what we’ve been struggling with while working with Rhema at home.  On the up-side, all the folks involved in Rhema’s testing, spoke about how smart she is and how wonderfully she verbally expresses and communicates — far above her age range.  The specialist gave us some tools to work with her at home on and some ideas to implement as we work with her on school stuff.  We will be getting a formal report in the mail from him, which we will share with Rhema’s therapy and medical team members.

To sum up this long post, we now have as good baseline picture of where Rhema is at currently, we have a credible source who backs up our diagnosis of a “cognitive processing issue”  and we have tools to move forward to help Rhema as she continues learning and growing cognitively.  I think those three gains are all WORTH the “early” testing hassles we were met with and all three gains will HELP US, HELP Rhema.  In the end, that is our job as parents, to help Rhema live a full, productive, joyous life and we WILL DO WHATEVER needed to meet that goal.  So, dear momma of a special needs child, if you are reading this, you keep your head up and listen to the Lord and your “momma gut”.  Listen to your team members as well too; they are a blessing and there to help us with our kid.  But in the end, YOU are the Momma, YOU and your hubby are THE PARENTS.  Everyone else on your team is a 9-5 influence — they clock in and out of our kid’s lives.  YOU are THE BEST advocate; YOU are your kid’s VOICE until they learn to advocate for themselves.  YOU are MOMMA –ROAR when you need to!   Amen!

Easter 2014 Side Profile SNAG-0002 SNAG-0002