I debated writing about this particular evaluation at all.  I am ultra sensitive about the subject (totally cried like a baby at the eval) and I also don’t want Stevie to be pigeon-holed or labeled any certain way.  I don’t want people think of him differently when they hear his name or see his pictures.  But I have shared our family’s whole experience in blog form to give an honest look at what’s it is like to be a parent of a kid like Stephen.  I hope to connect with other moms who might be feeling alone in their situation.  So I will share this too and be honest with what we are going through.

When Stevie turns 3, he loses his benefits from the Regional Center.   Everything in his program (OT, PT, Speech) will be transitioned over to the school district.  But there are four exceptions to this rule – if the child has autism, epilepsy, cerebral palsy or an intellectual disability (mental retardation), they can continue getting services through the Regional Center.  They can still go to school and will likely be in Special Education classes that will still offer some of those services, but in order to get any supplemental therapy, the child has to have one of these disabilities.  So we got a psychiatric evaluation done to see where we stand.

He obviously doesn’t have cerebral palsy or epilepsy and the psychiatrist ruled out autism pretty quickly because he’s just so dang friendly.  But then there’s the matter of the intellectual disability.  He is so delayed, that it’s a possibility. I’ve known it was a possibility, especially with the trauma of his heart defect and surgeries, but obviously you hope that’s something that never has to be diagnosed.  Even though it changes nothing as far as what we are doing with him or our plan for him and how much we love him, it’s just a diagnosis and I don’t want it!  It will follow him around through his tender school years and the rest of his life.

Blah blah blah. I know.  Keep reading.

The tests began and I watched him struggle to play with the toys that she offered.  He couldn’t stack blocks or put simple puzzle pieces together or match shapes.  This was no surprise to me.  I sat back and cringed, kind of wishing he would just magically figure it out.  Today’s the day Stevie!  Just do it!!  These are all the things that we work on daily, weekly, hourly between his therapists and I.  But he didn’t get it.  He didn’t really understand the concept of pretend either and after a few short tests, got frustrated and started to throw things. He couldn’t properly identify pictures (even though he does at home!) and it was at this point, the psychiatrist let him take a break and talked to us.

She told us that an intellectual disability is a possibility.  BUT, she did not want to label him with that diagnosis just yet.  She knows just as well as we do that once a child is given this official diagnosis, it affects everything they do and the way the teachers will treat him going into school.  She said he has made just enough progress over the last year, that she just wasn’t comfortable making that call yet.

She pushed for Regional Center to continue his services without a diagnosis, just based on how severely delayed he is.  And they are allowing him to continue supplemental therapy through the Regional Center!  This is great news for us.  No out of pocket insurance costs and he gets to work with the best child therapists around.  We will revisit the possibility of a disability when he’s around 5 because that’s just more fair for him to have a chance to get caught up.

Stevie doing the sign for “tree” (or giving me the finger??) and playing with his favorite bus.

Sometimes it’s really hard not knowing why Stevie is the way he is.  But this particular day, I am fine with it.  It means no official diagnosis.  We have very mixed emotions.  Hoping this will give him a chance to get caught up a little more.  We will just keep working our butts off to get him to a better place.  Let’s hope this handsome kid will let go of some more of his stubbornness and work with us.