M in a nutshell.

Tomorrow I take M back to the neurologist for our follow up after the seizure.  The type of seizure M had was a  grand-mal, now referred to as a "tonic-clonic."  I have no idea who decided the names we use to refer to different types of seizures should be changed, but if anyone is interested in my two cents, I'd say go back to good ol'  "grand-mal."  The translation literally means, "big-bad" and that sums it up perfectly for me.

I am not a fan of neurology appointments (who is?) but I do like this doctor.  He talks to me and he also talks to M.  Far too many doctors discuss M, in front of M, as if he wasn't there.  I like that he puts down his pen, looks me in the eye and listens to what I have to say.  These two things make him worth his weight in salt.  I can tell you also what he lacks:  a big ego.

So off we shall go.  We will discuss the seizure.  The genetics test results.  The next steps we decide to take (or not to take.)

I have mentioned that M has no overall, unifying diagnosis.  We've ruled out several hundred things he does not have.  This is good, but there is a bit of frustration that comes with the unknown.

Some of you who read this blog know M personally.  Many of you do not.  I've been asked by people who do not know M to describe what he is like.  I can say this:

If you want to know, diagnostically speaking, I can tell you:

M is similar to a child with CP (cerebral palsy.)  His gait is awkward and fine and gross motor skills are lacking.  His walk sort of resembles a drunk monkey.  (I'm his mother so I can say that.)

M is also similar to a child with Down Syndrome.  Like many with the syndrome, M is friendly and affectionate.  He is sweet and warm.  M knows no strangers and everyone is a friend  It can be endearing but the potential risk for danger is concerning.  M is slower than a typical child at learning but has a very good memory and retains what he learns.  His IQ score is borderline for mental retardation, however the psychologist who tested him said she wasn't convinced that label was appropriate for M because he does have areas of functioning that are quite average.

M has several of Autistic tendencies.  He can be stubborn about how things are done and in what order.  He is repetitive with his speech and perseverative in his behaviors.  He likes routine and order.  On occasion he will have very loud and very public meltdowns.  He can be difficult to reason with.  He flaps his arms wildly when excited and lately he like to chirp like a bird.

On the personality side, M is a pretty techno-savvy kid.  He is a master on the ipad and with a Wii. The speed at which he can figure electronics out is astonishing.

He loves books and words.  He has an amazingly long attention span for being read to.

He loves the outdoors.  M loves the grass and sand and water and snow.  He will play outdoors for hours and often cries when I bring him inside.  There have been many mornings that M has been outside playing at 7am before his bus arrives in the driveway to take him to school.

M is polite.  He always says, "please," "thank you," "excuse me," and "I'm sorry."  M's speech is limited, but these four important phrases will carry him far in life.  He learned at a young age what many adults still have yet to master.

M is sweet and loving.  M is always happy to see you.  M wants to sit by you, talk to you, be with you.  M makes you feel appreciated.  Loved.  Needed.  Wanted.  That you matter.

M is brave. Through everything he has endured in his young life.  Through the countless appointments and procedures, he has been brave.  There is nothing comes easy for him and he has to work ten times harder than anyone else.  He struggles.  He falls. At times he is not feeling well. And still, he is brave.  He keeps getting up.  He keeps going.  With a big smile on his face.