autism part two.

with the full realization of finn's diagnosis of autism comes the demand for action on my part.
and that's helpful as much as it is hard.
you know, because when you feel like you can't do anything, it always helps to do something.

i am reminded of sleep training with finn, when he was ten months old.
he still slept in bed with us and was nursing every couple of hours.  i was tired, and thin, and he was big and healthy, and we knew he should be sleeping in his bed.  but we couldn't stand the agony of hearing him cry even for a minute.  we always rushed to him, and held him, and snuggled him in our arms until we all fell asleep together.
when we finally decided it was time, it only took a few days for finn to sleep through the night in his bed by himself.  i started by going in and holding his hand or patting his back, but not picking him up.  after a couple of minutes he always fell asleep and was fine.  but those couple of minutes of crying felt like years to billy and me.  we had to watch a clock to remind ourselves how briefly he would fuss.
through the process of sleep training, i learned that finn was ready to sleep in his bed by himself.  he didn't need me there with him all night long.
i was the one who hadn't been ready.

we put finn in a private pre-preschool for two year olds with developmental delays in december.  it was just three hours a morning, two mornings a week.  he struggled there.  they put demands on him that i simply don't put on him at home.  we tried it for three months, and then i pulled him out.  he wasn't ready, we said.  but i don't think i was ready.

i love having finn home with me and i know just how to make him happy.  i know all the right songs to sing and things to do and places to go and foods to eat.  i know just how to make him smile and laugh.  but i don't know how to really challenge him.  or i don't like to.  and he knows all the right mom buttons to push so that i don't make him do any nonpreferred activity for too long.  having four teachers come over every week for an hour each helps a lot.  when they're here we do some challenging activities.  but when they're not, i just like to make finn happy.  and for a while i thought that that was okay.  because i thought that's what mattered, and he was going to catch up with his developmental delays, and he didn't need me hammering puzzles and shape sorters into his head all day.  but now i think that might not be true.

finn doesn't really acquire skills the same way as other children.  he is not interested in toys or activities the same way that other kids are.
puzzles are for tasting.  balls are for watching.  blocks are for pushing.
he doesn't know what to do with things unless you show him.
oh, and he doesn't want you to show him.

a good example of this is a little treasure chest toy we have with plastic coins.  there is a slot in the top, and when you put the plastic coin in, it lights up and sings a song.  three months ago, to finn, this toy held his interest about as much as minor league bowling holds mine.  it doesn't.  let's move on.
but for months, we forced finn to practice putting the coin in the treasure chest.  i did this by holding finn's hand in my hand and making him do the action with my guidance. this was normally only achieved through brute force and many tears.

then, one morning last week, finn woke up, came in the kitchen, found a plastic coin, and walked across the room and put it in his treasure chest.  like he had been doing it every day- it ain't no thang.  when i erupted in cheers he swelled with pride.  now he plays with it often, and is so proud of his new skill.   i don't think he remembers all the tears and fighting it took to get there.  but i do.

and they were worth it.

this is just one example that makes me realize that hard work pays off with finn, even if it's not fun work.  he really needs those tough and consistent demands placed on him just as much as he needs all the cheerleading he gets from me.  without them, he just simply doesn't grow and develop as well as he can and should.

finn's developmental pediatrician suggested we send finn back to his special preschool class, but with a "mary poppins" type aide (where are you? are you out there mary poppins!?) who can support him and his emotional needs and snuggly bugglyness while he's getting challenged in a classroom setting.  she also suggested we look into some more rigorous therapies for him.  i think she recognized in him the ability to achieve much more... and she probably recognized the ability in me to become a human mom cushion that makes finn's life easy peasy.

it's easy to talk about more challenging therapies for finn, it's a lot of paperwork to get them, and it's emotionally and physically exhausting to do them.  i hated leaving finn crying at preschool.  i hate making him do something that i know makes him upset and stressed out.  i hate not being there to make it better, and i hate not being able to cheer for him when he gets it right.  basically, i don't ever want him to be away from me... especially not anywhere scary like preschool.  but i know that i need to challenge myself in order to challenge him, and that we need to up the ante in the therapy department. 

pray for us on this journey, that we will find and choose the right therapies for finn, that i will have the strength to stick with them, and that finn will thrive.
billy and i see how bright and wonderful finn is every day.  we are so blessed to have a special connection with him.  so blessed that he lets us into his world.  but we want him to be able to open himself up to other people and learn skills to succeed in the world outside our window as well.  sometimes i would like to keep all of us holed up in here forever with nothing but laughs and songs and goldfish crackers.  but i am accepting that that isn't reality, and i have to get serious if i want finn to survive out there in big bad preschool land.


it's not going to be easy for any of us.

but it's going to be worth it.

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.

happy in the springtime.

finn, along with the rest of us, went through a bit of cabin fever at the end of the winter.

for a month or two, he really didn't like it when people came over. he always wanted to get away, get outside, get some air, have some space.

for a while we thought he was developing some anxiety, but it it turns out he does a lot better with just a little extra breathing room.  open windows, open doors, a driveway to run in and a backyard to explore. 

the truth is, since the weather's turned he hasn't seemed anxious at all. 
i think we can all relate.

we have a lot of different teachers and therapists that come over every week to help finn.  i hear lots of stories and recommendations about what has helped other kids with autism who have anxiety.  a lot of these kids have trouble being flexible.  they like set schedules, are anxious in new places, etc. etc.  there are lots of ways to help them prepare for the day... like picture schedules, home videos of taking trips to the doctor or the store, etc.  finn likes pictures, and he likes to talk about what we're going to do for the day, but he really doesn't seem to need to.  he is pretty easy going when it comes down to it.
he's just different.

today, for example, we had to go to a new doctor to get blood drawn.
the waiting room was packed.  tons of kids, tons of parents, delivery guys, busy staff in and out of numerous doors, and lots and lots of different (and actually cool) toys to play with.  big winding gear toys and video games among many other things.  try as i might, i couldn't get him to pay an ounce of attention to the toys.  not the spinny ones, not the colorful ones, not any of them. 

but he was extremely content.  i mean, he was actually thrilled to be in the waiting room.  gleeful, even.  it was a big waiting room, for one.  there was lots of room to run around in.  and that's exactly what he did.  he ran.  from the front door, to the receptionists desk across the room, and back again.  but every time he got to the receptionists desk, he would stop... consider the border of different colored shapes that ran across it, take special notice of the blue square, then lick it, and then run back across the room. 

he was completely thrilled with this experience.  he smiled and looked up at everyone that walked in the door.  he noticed the other children.  he wasn't nervous or upset.  he was just... you know, running back and forth and licking shapes. 

of course this got a number of quizzical stares.  i tried my best to distract him and engage him in other activities, but i couldn't.  he wasn't in anyone's way, and he was having a really good time, so eventually i just gave up and let him be... well, let him be finn.

after the horrific blood draw i almost ripped the shapes border off of the front desk and screamed "WE'RE TAKING THIS WITH US YOU BABY PUNCTURERS!"  but instead we both just cried and watched peter pan- you can fly on you tube... each clutching opposite ends of finn's woobie... until we composed ourselves enough to head back to the car.

aside from the horrible blood draw experience, the actual waiting room time was quite comical for me.  i've learned to just kind of sit back and laugh at these situations that, at one point in my life, would have embarrassed me to no end.  i always thought i would have children that wore ironed dresses that coordinated with my curtains and sat quietly and colored all day or, you know, worked on their needlepoint.  but i have one that only talks like a baby owl and licks wallpaper.  it's certainly not boring.  it's actually really funny.

and the reason it's funny, is because he's happy.  if he were anxious or crying or tearing at blue shapes and scared of the waiting room, it wouldn't be funny.  it would be scary.  and finn could easily be that kid.  for a while we thought he was going to be that kid.  and who knows, one day he might be.  but right now he's not.  so it's not scary, it's just funny, and happy, and weird.  and we just do the best we can with it.

and then we go home and play outside and throw footballs, and lick them, and pass out in a hammock.

it could be a whole lot worse.

but it's springtime.  and we're happy.