Sharing the journey Part II

In the situation where your pediatrician gives you a referral to have your child evaluated, apparently the specialty office is also notified.  I do believe that Nevada Special Children's Clinic called us to set up an evaluation for Emma.  I know that I was jolted enough by this experience to do all that I was told and I don't recall asking any questions. 

We took Emma to the clinic (the word clinic does not conjure up warm friendly places in my mind) for her evaluation.  I recall having more than one appointment.  We were seen by the general pediatrician who said, "I see Dr. Duddy is your pediatrician, he is thorough and if he hasn't found anything to be alarmed by, I doubt I will find anything either."  The only other thing that I recall her saying is she doesn't "see anything worth calling 911 about".  WHAT?  It took me quite awhile to figure out what that meant.  She meant that she did not find anything wrong with Emma on her physical examination. 

Now, you have to know that prior to entering the examination room, we were in the waiting room where posted everywhere are signs about staying off drugs and child abuse and carseat usage and warnings upon warnings.  Maybe you can see my temporary confusion about calling 911.  On more than one occassion we we witness to the harsh repremands a teenage mother gave to her year old, at the most, child.  I spent much of my waiting time trying not to be around the other clients at the clinic, it seemed to be a place for my already tender guts to be wrenched even further.

We were seen by a nutritionist and occupational therapist.  Upon the first meeting with the OT and the nutritionist, these women were sticking their fingers in my child's mouth and food from Tupperware containers.  REALLY?!  SERIOUSLY?!  What was I thinking not speaking up, not asking where is that from?  are your hands clean?  do you have gloves?  can we get to know each other first?  The nutritionist gave me some tips on how to introduce some fattening foods into Emma's diet and I don't recall meeting with her again.  The OT on the other hand, you remember, the woman sticking her fingers in my child's mouth, she became such an incredible part of MY journey.  I will be forever grateful for Debbie Michnal.  I do believe that I received more therapy from her than Emma received but I think our family was linked with her for that reason.

We had speech therapy.  Sound production.  Literally an hour spent trying to make a child produce sound by playing with random toys that some therapist brings by twice a month at most.  Really?  Yep really.  But the worst of our speech experience is that I did open up to Angie Solberg and almost uttered my worst fear.  Angie stepped in and said, "she isn't MR, Emma won't be MR".  I barely even knew what MR meant and she couldn't even say mentally retarded out loud.  I relied on her phrase for A LONG TIME.  But alas, she is a speech therapist and not skilled in the intricacies of Emma and she was wrong, another dream broken, another hope dashed.

We also gained a facilitator through this special clinic.  Doing it over, I would not have this woman.  When a woman comes into your home and tells your very precocious 3 year old boy who is full of wonder and void of the realities of grown-up life that "Superman is not real" that is the moment.  You kick that woman as far as your foot can send her.  I don't know what stopped her from letting lose on Santa.

Physical therapy also took some time to evaluate Emma.  Low tone.  Emma has such low muscle tone.  What does that mean?  Can it be overcome what do we do to work on her low tone?  I was innundated by so much information and by so much to do at home and try and implement and raise a 3 year old and be a wife and mother and daughter and sister and aunt and hold a calling in church. 

I can clearly remember having some serious anxiety at this time in my life.  I didn't realize it was anxiety, I just kept plowing through the things that I had to do.  What are the options?  Run away?  Hide?  NO!  Put on your big girl panties and deal with it!  I had experiences where I didn't physically feel present in the moment, I almost felt out of my body.  I cannot put the words to what I went through.  I do clearly remember going to the Red Lobster with my parents and the children.  I don't know where Rob was.  I just remember feeling like I was physically at the table but that I wasn't.  I remember thinking just breathe and take the next minute....and the next..... and the next.  Eventually I felt back to normal.  It was an incredibly bizzare feeling that I think may have been like a panic or anxiety attack.  Why didn't I speak up?  Why didn't I ask for help?  Why did I just keep pushing through?  Because I had two beautiful children that would need me for diapers and nursing and jammies and playing and therapy and appointments.  Isn't that what moms do, push until we are on the brink.  Watch for that brink! 

I don't recall ever feeling such anxiety after that Red Lobster experience, I think that was the time that I realized it was anxiety, the holding my breath, my shoulders up around my ears, not being able to just be right here right now.  I know that for me dealing with special needs, I need to be right here, right now.  Letting my mind go to what could have been or what is to come will bring WAY too much anxiety so we take baby steps and yes in size 12 shoes you can take baby steps............