autism part one.

finn had his six month follow up today with the developmental pediatrician who originally diagnosed him with an autism spectrum disorder when he was 19 months old.

the purpose of this appointment is to evaluate.  to sit back and see what we've done over the past six months.  what information we've gathered, what tools we've utilized, what has and hasn't worked, and what the best path is to take moving forward.

the past six months have been a blur of doctors appointments, and visits with specialists, and afternoons with therapists, and all varieties of music, gym, library, and preschool classes.  it was good for me today to stop and reflect about what the past six months have brought us.  but it was hard for me.

with an autism diagnosis comes the responsibility to rule out a million other possible diagnoses that could mean that it isn't autism.  or it isn't just autism.  you look for any underlying treatable problem or medical issue. 
but i hesitate to use the words rule out, because when you are in this process, you desperately want it to be that other possible diagnosis. 
you don't want to rule it out. 
you want to keep it. 
and rule autism out.

first was the ear doctor.  new ear tubes, and an ABR hearing test under anesthesia. 
maybe my baby can't hear... he isn't developing properly because he can't hear me!  of course!
because a hearing loss is treatable, you see.  there are hearing aides, and implants, and sign language.  but his hearing tests came back normal.

asleep before the anesthesia at dupont

next was the lab work.  maybe finn's lead levels were high.
maybe my old house is poisoning my baby!  maybe that's it, and if we move my baby will get better!
but his lead levels were normal.

next was the neurologist, and an EEG of finn's brain to see if he was having any abnormal or seizure activity.
maybe my baby is having seizures and we don't know it!  my god, it would be horrible. but we could treat it!  we could give him medicine and then he would be okay!
but his eeg was normal.

exhausted with sticky hair after the eeg

with every normal test result, the doctors say "good news! everything is normal!" 
and my heart falls. 
because in my one hand i was holding that test.  that other diagnosis. 
and in the other hand i am holding this big monster question mark, this scary unknown beast that is autism. 
and i am left holding it every time.

there are two little boys with down syndrome in finn's music class.  he is very much like those little boys.  i am so lucky to have a little boy with autism that is snuggly, and sweet, and gives me kisses and smiles and is joyful.  this affection isn't so common in the autism world, but it is very common in the down syndrome world.  and like those little boys with down syndrome, finn is also developmentally delayed.

sometimes i think about their mothers, and how they must have felt after a long and painful delivery when their doctor handed them their baby.  their baby with the visible and clear signs of a lifetime of challenges.  their baby that was born different.  and they knew it from the moment they first held him.  how scary that moment must have been for them.  how definitive. 

my moment was so different.  i was given the gift of being handed a perfect baby after a long and painful delivery.  there were no clouds in the sky the day finn was born.  the world was his oyster.

learning that my baby was in for a lifetime of challenges has been a series of many tedious moments.  of many long waits in hospitals and doctors offices.  of many test results and evaluations.  we held on to this little hope for so long that it could be something else.  that his delays could mean something different.  that he could be fixed. 

but slowly over time, all the little moments add up, and you realize that maybe your baby can't be fixed.  maybe when i held finn for the first time, i was holding that little down syndrome baby, and i just didn't know it. 

his life is going to be different forever. 
he will have challenges forever. 
the invisible challenge that is hidden under his perfect face. 
the one that they call autism.

sometimes i feel like autism is just the word they made up to give you when all of your other test results come back normal.  it doesn't really mean anything except that it doesn't mean anything else.
i hate it.

there are so many people out there that celebrate autism.  that own it, that love it, that embrace it for what it is.  and then there are others that fight it, that look for cures for it, that demand medical breakthroughs and better treatment options. 
i am neither of those people. 
i ignore it. 
i run from it. 
i want it to go away. 
i want my baby to wake up one morning and say "good morning, mama", and for us to all let out a big sigh of relief. 
"what a scare he gave us when he was little!"  we'd laugh years later as he grinned and walked across the stage to grab his diploma.

how i envy those mothers with their precious boys with down syndrome.  how i envy what they knew from the beginning.  how i envy that they were spared the agony of the slow realization of what they were in for, of the torture that is your heart breaking in tiny pieces little by little every day.  until today, when i sit here and i hold all the pieces in my hands and see it for what it is. 

the first time she said it, i didn't really hear her.  six months ago, we thought the autism diagnosis was just an aggressive diagnosis to get finn loads of early intervention to snap him out of it.  maybe he was just a little bit behind. 
but today, when she said it, i heard her.  it sunk in. 

my little boy has autism.

i didn't cry six months ago. 
i cried a lot today.