a new kind of christmas

christmas was hard for billy and i this year.

in our culture today, christmas is special for kids.  it's special for families, and for traditions.
we love this stuff.  seriously, billy and i eat it right up.
and both of us have childhoods packed full of happy christmas memories.

so this year was tough.
because we wanted it so bad for finn.
but it's just different.  he's different.
we couldn't get him to look inside his advent calendar.
we couldn't get him to notice the elf on the shelf.
he didn't want to look at the ornaments on the christmas tree.
he didn't understand the presents on christmas morning.

it was hard for us to watch videos and see pictures of our friends with kids even younger than finn, and see the looks on their tiny faces when they saw what santa had left them under their christmas tree.  it was the look we had hoped for.

it was hard when he started screaming as soon as we walked into billy's parents house, arms full of presents and breakfast casseroles, eager to see our loved ones.
it was hard to see their faces fall.  because they had been hopeful, too.

it was hard to spend the first 30 minutes of christmas tucked away in an upstairs room, trying to soothe our inconsolable little boy, who just couldn't handle all the new faces and changes in routine and who couldn't tell us that he was tired and didn't feel good and didn't understand all of this christmas stuff.

but as billy and i laid in the guest bed with him, trying to rub his back and sing to him while he cried and rolled, i thought a lot about christmas. 
and for some reason right then, i didn't think about my disappointment.  and my frustration.  and i didn't ask why. 
i just thought: this is so hard.
and my mind went right to the first christmas.  the christmas so long ago.  the real meaning of christmas that we talk about when we're not at target or wegman's or wrapping gifts or drinking starbucks.

and i thought about mary.
and i thought, my god.  it must have been so hard.  so impossibly hard.
and i thought maybe my feelings of helplessness and confusion were probably the same feelings she felt.  the feelings that come with being assigned to a job you don't feel qualified for.

i found some peace in that.  and it grounded me.  and it made me realize that all of the little christmas traditions that are so important to me don't really matter that much anyway.  and i let a little bit of it go.  and the day got better after that.

on the way home christmas night, finn fell asleep in the car with a look of content on his face. 
i asked billy if he had a good christmas, and he said "it was okay, mama."  and i knew what he meant.  it was a new kind of christmas for us.  not a bad kind, just a hard kind. 
but we made it through together. 

hills and valleys.

over time i have learned that finn doesn't quite operate on the same scale as other kids in terms of steady progress.  we have hills and valleys.  good days and bad days.  two steps forward, one and a half steps back.  

sometimes it's hard for me to celebrate progress because i'm scared it's going to disappear again.

like mama.

he said it for four days, and we haven't heard it again for the last three weeks.

one day a couple months ago he said "up" three times climbing up the stairs.  we never heard it again.  the same for "ish" for fish and "boo" for blue... all have come and gone.

his teachers tell me that this is very common with language and kids on the spectrum.

it's frustrating.  

it sometimes seems as though he is acquiring a wealth of vocabulary, and sometimes the words slip out, but then his brain frantically gathers them back up and tucks them away somewhere.  out of reach.  

aside from the inconsistent speech progress, we have been making really great steady progress overall with finn.  he still has his bad days- particularly days where he is very tired.  he is normally a great sleeper but sometimes with a cold or a molar cutting through he will not sleep well at night or nap poorly and then we'll see a real impact throughout his day.  rather than being fussy or tantrumy like a normal 21 month old, finn kind of copes with any discomfort- like fatigue- by zoning out.  he won't make good eye contact, he'll become really distracted with clocks on the wall or spinny things.  he tries to go into his own little world.  this is rare.  of the past two weeks, we have had one day like this.  the other days have been phenomenal.  the bad days can kind of put a real crimp in my style, but i try to use them to observe finn and learn as much as i can about him and what his little mind needs.

finn's occupational therapist continues to be an enormous help with navigating finn's sensory world.  the towel at bath time has proved so helpful that now he is almost comfortable enough in the bath that he doesn't need it.  we use a sensory brush a few times a day regularly, a weighted blanket, and he is getting an indoor swing and a weighted vest for christmas.  providing this sensory input for finn at regular times throughout the day has helped him so tremendously.  he seems much more comfortable in his own skin now.  before, he would kind of wander around like he didn't know what to do with himself- he would flap his arms and search for some kind of visual stimulus.   now he is much more purposeful.  

the sensory stuff can be really complicated, but i try to explain it to people with a food analogy.  if you were starving and you didn't know when you were going to get your next meal, you would wake up in the morning and your entire day would be consumed with finding food.  you would be desperately seeking a solution for your grumbling tummy, just to help you feel a little bit satisfied.  you couldn't really focus on anything else until you found something to eat.  now, we don't wake up overcome with anxiety about eating because we know we are going to have breakfast, lunch and dinner every day.  we have semi-reliable meal times.  with kids who have sensory issues, providing predictable and regular sensory input, like using a weighted blanket, giving tight hugs, swinging, etc. can help them feel more stable and balanced so that they can focus on other things throughout the rest of their day.  they aren't constantly seeking sensory feedback because they know that they will get that need met.

in the past few weeks we've seen great progress in finn's physical abilities- he seems to have a better feeling for his body in space.  he has started pushing things around the room, dancing more, marching, shifting his weight from leg to leg.  he is much more proficient with and actually really seems to enjoy doing puzzles and shape sorters and manipulating pieces with his fingers.  we had our first class at "my gym" today for toddlers and he LOVED it.  he did somersaults and climbed ladders and went down slides.  he took turns and climbed on the trampoline with other kids- it was adorable.  he loved running around and feeling the different textures and mats underneath his feet.

we have also seen great improvements in finn's cognition.  today i was washing my hands and said "finn do you want to climb up on the stool and wash your hands, too?" and he came over and climbed up on the stool.  this was big!  i was telling one of his teachers earlier this week how he had matched up his animal magnets himself while billy and i weren't looking and he ran into the kitchen and pushed the animal magnets into the little barn again like "yeah just like this!"  he really seems to understand everything i'm saying now.

but my favorite steady progress has to be finn's connection with us and how strong and steady it continues to grow.  this is something that never slides back and has only grown stronger.  he has made huge communication efforts lately- bringing me a picture of his shoes to go outside, pointing to a picture of daddy when daddy went upstairs and he was looking for him, and signing "bubbles" for more bubbles with his speech therapist.  he constantly wants to hold my hand and hug me and every time he sees something cool or exciting he is looking for me and grabbing me so i can see it too.  today at the gym for the first time he was so excited and kept looking over at me with a huge grin on his face and coming to get me to show me everything.  he wants me to be a part of all of it with him and i love that.  tonight in the bathtub he was playing a funny little game with me, holding both my hands and pretending to sit down and then standing back up and then sitting down and popping back up again.  he had the best eye contact through the whole thing and a little sly grin on his face and not a care in the world and i just thought "there he is!  there's my boy!"  

in the past two weeks especially billy and i both feel like the real Finn has been able to come out a little bit more- more relaxed, more connected, less distracted.  it's so great and encouraging to see him shine. all of the potholes and detours and speed bumps along the way are well worth the effort every time we see him smile.

thanks to all of our wonderful friends and family who are out there rooting for him.  your prayers and positive thoughts make a huge difference to us.  

our former pastor shared this gerhard frost quote this past week on facebook.  it is comforting to us as we struggle with the reality of what happened at sandy hook.  there has not been a day since that we haven't cried for the families who lost their babies, and held ours a little tighter because of them.  i thought this was kind of perfect, and hope it brings rest to your heart as well.

If I am asked 
what are my grounds for hope,
this is my answer: 
Light is lord over darkness,
truth is lord over falsehood,
life is lord over death.

Of all the facts I daily live with,
there’s none more comforting
than this: If I have two rooms,
one dark, the other light,
and I open the door between them,
the dark room becomes lighter
without the light one
becoming darker. I know
this is no headline,
but it’s a marvelous footnote;
and God comforts me in that.

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teacher gifts

we are so blessed to have NINE, yes nine, amazing teachers, therapists, volunteers, and caregivers in finn's life right now.  if you had told me a couple of years ago that my one and a half year old was going to have nine teachers, i would have told you you were crazy.  but here we are!

finn has four regular therapists- occupational, physical, speech, and specialized instruction, his regular babysitter "dee" that he has been going to on thursdays and fridays since he was eight weeks old, and now in his ABBLE preschool program two mornings a week he has three teachers and a volunteer!  phew!  each of these wonderful women are different and i believe they all help finn in unique ways.

we wanted to do something special but affordable for all of his teachers this year for christmas, and i came up this:

fuzzy socks, "barefoot" wine, and a homemade footprint card!

i went a little overboard with the foot theme but i couldn't help myself.  i love this stuff!

we have been able to give most of his teachers their gifts already, and it was so heartwarming to see how excited they all were just to have his sweet little footprint on paper.  having teachers in his life that are so dedicated to him and take such delight in his successes is a real blessing.  i am so thankful for each and every one of them.

phew!

the past month has been a whirlwind at the murphy household and december is shaping up to be just as busy!

i wanted to stop and write a little update on finn since i realized i forgot to keep everyone informed on how his ear tube surgery went! 

surgery was easy peasy, finn went through with flying colors, and we had our post-op visit yesterday!  his new tubes are working perfectly and his hearing test was normal!  hooray!

since the new tubes finn's balance has improved tremendously!  he is all over the place, and now that he is realizing he is steadier on his feet he is trying out all kinds of new dance moves!  our favorite right now is the "elvis presley" which consists of a knee bend/hip pop combo.  he also loves to run up and down hills at the park.

practicing hills with dada! (billy's going to hate this picture- sorry honey!)

he only had one fall this month- which is a major improvement considering he was wiping out three or four times a day minimum before his surgery.  we are really happy with how everything went.

we had a great thanksgiving with some of my side of the family, and finn had a blast with his cousins jackson and caroline.  they were both so good with him.  we are super thankful for the kind and compassionate children we have throughout our families! 

reading with cousin jackson

we built a new play room for finn this month with lots of sensory tools and toys.  he started working with an occupational therapist this month and she is already making a world of difference.  she really seems to be in tune with finn and some of her suggestions have been life savers! 

exploring in his new room

for example, finn hates to take a bath and won't sit in the bath tub.  he will just cry and cling on to me while i try to scrub him down.  his OT suggested laying a heavy wet towel over his shoulders while he's in the tub.  the first night i did it finn let out a huge sigh of relief and looked right at me as if to say "phew! that's so much better mom!"  now bath time is actually starting to be enjoyable and finn will actually sit down in the tub, all thanks to his occupational therapist and our "magic" towel :) 

she also lent him a weighted blanket which he loves to lay under.  he is so calm and relaxed with it.  yesterday after laying under his weighted blanket and watching some songs on my iphone, he was able to get up and transition away from the phone without any fussing, and he even initiated working on a puzzle and did a great job with it!  learning how to help meet finn's sensory needs is really helping him focus, and it's so encouraging to me!

finn has also started making a lot more sounds since his surgery- i am happy to announce the return of "mama" and "baba"!!  he doesn't always use them correctly, but we are just happy he's talking!  i can see him really trying and making new consonant sounds every day, so i'm hoping his speech takes off in the next few months!

we enrolled finn in a special program through the arc of chester county, called ABBLE.  it is a pre-preschool specifically for two year olds on the autism spectrum.  we visited the classroom this month and we think it will be great for finn.  the teachers work individually with the students on learning the PECS communication system- which is a picture communication system, and help them learn the basics (which aren't so basic for finn) - like sitting at circle time, having snack at a table, playing with peers, asking for help, etc.  he will go two mornings a week for three hours each time.  this will be a challenge for both of us at first, but i'm certain that finn is really going to benefit from this.  he starts this coming tuesday!

we are excited for all of the new things going on with finn, and we are also excited that it's the most wonderful time of the year- christmastime!  we hope everyone is enjoying the holiday season as much as we are already!  lots of love!

checking out the tree at grandma and grandpa's

surgery is on!

finn's ear tube surgery is still on for tomorrow, despite hurricane sandy's best efforts to screw things up!

we are really excited to get it behind us!

it was definitely nerve wracking going into surgery with finn last december, when he was only 9 months old, to have his ear tubes put in.  but the surgery only lasted a few minutes- it's so quick! and he did great. 

this go round, things are going to be a little more complicated.  finn has to have an auditory brain stem hearing test while he's under anesthesia.  this will tell us how his brain is translating sound.  it was recommended by his doctors since his hearing tests have been so inconclusive.  the hearing test itself is non-invasive and doesn't carry any risks, it's just that finn has to be completely still during it, and that's why they wanted to do it after he is already asleep for his ear tubes.

...the only thing is, the hearing test takes two hours.
a lot longer than the five minutes the ear tube surgery takes.  so he's going to be under anesthesia for a significantly longer period of time than before.  this means he has a greater risk of being sick to his stomach when he wakes up (and we have a greater risk of being sick to our stomachs while he's asleep! ahhh the nerves!)

so tomorrow morning he will enjoy a heaping breakfast of jello and water, and then we'll head to the hospital.  we are praying for an easy and successful surgery day with no surprises!  we appreciate your thoughts and prayers (and my favorite positive hippie vibes of course!)

we'll let you know how he does! here's some fun hurricane sandy pictures in the meantime! :)

i love it when dad's home from work!

playing on our hurricane air mattress!

sandy tree explosion.

we have a lot of cleaning up to do, mom!

surveying the damage.

this way!

pondering puddles.

more than i can handle.

this morning was finn's pre-op appointment at dupont hospital to give him the go ahead for his ear tube surgery next week.  it's a lot of poking and prodding and doctors office-y type stuff, and frankly, after the big tiring day of poking and prodding we had yesterday, both of us were pretty over it.

finn was not happy to be there, and he was even less happy about the hour drive in our new-to-us car that doesn't currently have a dvd player (first world problem, kid.)  it took all of my mommy tricks to get him through the appointment, and most of those involve singing and making goofy gestures in public.  i no longer have any shame.

even though it was quite the mental and physical workout, going to dupont today was the perfect thing for me to do after finn's big evaluation day yesterday.  whenever i go into a children's hospital, i am greeted with the overwhelming reminder that we are so blessed, and so lucky, and that finn's challenges are so miniscule in comparison to what some of these other kids face every single day.  just in case i was thinking about having a pity party this afternoon, dupont went ahead and kicked me in the pants and told me to keep my chin up.  will do.

the best part about our visit today, however, was not this great reminder of how blessed we are.
it was not the amazing staff of nurses who could somehow hear finn's heartbeat over my iphone blaring "the circle of life" (he hugged both of them so they were pretty much jelly in his hand).

it was the very short time we spent in the waiting room.

there were a couple of "normal" looking kids waiting, playing games on their ipad, a couple of really active toddlers, a couple of kids who had some obvious delays, and then one of the handsomest teenage boys i've ever seen.  he was in one of those really intense looking wheelchairs with the head support and crazy mechanics, and he was non verbal.  but you could tell by his eyes that he had this wonderful mind that was trapped in this frustratingly uncooperative body.  my heart just breaks for kids like that, and there's so many of them at dupont.

i kind of took note of all of the kids in the room and then started to pry finn off of my neck to get him to play with some of the toys or interact with some of the toddlers.
as soon as i got him off, the handsome boy in the wheelchair let out this incredibly loud and awkward noise that, god bless him, sounded like he was trying so hard to just say "hi" but it came out more like "HAAARRRGGGGGHHHHHHHHUHHHH!"
every kid and parent in the waiting room jumped, and stared at him in complete horror, and then quickly turned their eyes, ashamed, back to what they were doing.

and then i looked at finn.

he was "drumming" on the seat of one of the waiting room chairs, looking at his hands, ignoring everyone else around him, but when he heard the boy make his attempt at a hello sound, i watched this beautiful smile spread across his sweet little face.
he was the only one in the room who's immediate and unfiltered reaction was one of joy and natural acceptance.  he looked up from his hands, looked right at the boy in the wheelchair, gave him a big old grin, and waved to him.

and i thought the boy in the wheelchair's face was just going to split open because it brought a whole new meaning to the term "smiling from ear to ear."

it took everything i had left in me not to sob in the middle of the waiting room.

never, ever, have i ever been so proud.

a lot of people have reminded me lately that god doesn't give you more than you can handle.
and i love everyone who says that to me, because it's said out of nothing but love and encouragement.

but i kind of hate that saying in and of itself.
because i think a lot of times you do get a lot more than you can handle.
and i don't really think it's god that's dishing out this hard stuff and making you handle it.

but i do think that sometimes god gives you things like the waiting room this morning,
when you really need it. 

so you can see that hidden in these challenges are the most perfect gifts.

* * *
after i wrote this and re-read it, it reminded me of a blog my cousin-in-law posted earlier this year.  
i went back and found it and re-read it, and it's so so good.  enjoy.
http://www.littlemeems.com/2012/03/perspective.html 

diagnosis.

the post-evaluation meeting we had with the doctor and therapists went really well this afternoon.  billy and i are both so very grateful for the team that we had.  we feel like they really understood finn's strengths and weaknesses accurately and got to know him well in the short time they had with him.  we are so beyond thankful for the early intervention program and the dedicated professionals that are really changing lives by working with families like us to give kids like finn the best tools to help them succeed.  we couldn't be happier with how today went.

the developmental pediatrician started off the meeting by telling us how impressed she was with billy and i at identifying these early warning signs with finn when it's so easy to turn a blind eye with kids as young as he is.  she said that since we have been so aggressive with getting finn access to every resource available to help him, that she thought we deserved the same from her.  since finn is responding so well and really learning and growing in the early intervention program, she wanted him to have every opportunity that they had to give him.

there were a few tests and scoring systems that they used with finn today, and they were so kind as to not score him on tests like the A-DOS, which is designed for children 2 and up.  we were so worried that they were going to score him on a test he was too young for and he would once again look "really bad on paper."  that didn't happen.  they noticed all of finn's awesome traits, including how laid back, content, and affectionate he is.  but they also noticed his weaknesses- no imaginative play or imitation, and inconsistencies with eye contact and responding to his name.

in all of the tests that they scored finn on, including the DSM-4 and CARS, he ranked on the low end.  he just met the criteria for an autism spectrum disorder, but he fell into the mild/moderately autistic category and not the severely autistic category.

freaking.
huge.
relief.
(not the bubble kid!!)
(i'm sooo terrible!)

so, officially, today finn was diagnosed with an autism spectrum disorder.
today.
not forever.
and if it's forever, that's okay too.
but we're not about labels around here.
we are about tomorrows.
and hope.
and freaking hard work.

the developmental pediatrician did not feel at this time, considering finn's young age, that she had enough evidence to diagnose him with a specific disorder, such as PDD-NOS.  but by diagnosing him on the spectrum, she is opening the door for more intensive therapies.  we have already added an occupational therapist through early intervention as of today, and will be looking at adding a behavioral specialist, mobile therapist, and therapeutic staff through a behavioral support service.
i literally don't know what any of those things mean yet, i just copied them off of her recommendation sheet.
the point is, she hooked us up. 

instead of feeling overwhelmed like i thought i would, i really feel so encouraged and empowered.  the people we met with today were right on the same page with me, and they just want to help finn succeed.  we feel so supported.
they all just loved him so much, too.
you should have seen him popping his little head up over the conference room table this afternoon and making eyes at everybody like "aww shucks, are you guys talking about me?" and then burying his head in billy's lap.  cutest thing ever. 

the doctor is excited to see finn again in 6 months to see how he's doing.
we hope he walks in there and gives her a high five and a big "thank you!" :)

what a big day!  i'm going to have a much deserved beer. or three.
thanks for checking in on us.  all of your prayers, thoughts, positive hippie vibes, and words of encouragement really paid off!  seriously, we feel the love!
xoxo

and he's worth every bit of it.

morning recap.

i think things went pretty well this morning.

i mean, it's not a natural environment that they stick you in.  we're locked in a room with an observation glass with a handful of toys and a few chairs.  billy and i were instructed to sit there and try to interact as little as possible, only offering finn reassurance if he came to us for it.

so he's in a strange room, with strange toys, and a strange person (the child pyschologist) trying to play with him.

right off the bat, finn started exploring.  he is very cautious and slow to warm up to everything- new people, new toys, new anything.  so the fact that he wasn't hanging on me or hiding in my hair was a huge plus. 

my next fear was that he would completely ignore the strange child psychologist altogether.  that's kind of his defense mechanism- he's very shy.  but he didn't ignore her at all.  whenever she pulled out a new toy or activity he paid attention to her.  he didn't always interact correctly... when she sat him down at the table to have a pretend birthday party for the baby doll he didn't blow out the birthday candles.  but he also didn't throw everything on the ground and walk away.  he sat there and took all of the candles out of the cake and waited for her to sing her stupid fake happy birthday song and then he got up and left.  ha!

i was watching for some of the things we've been working on and i thought finn showed some of those things well.  she showed him two rubbermaid snack containers- one with goldfish in it, and one with teddy grahams in it- and he chose which one he wanted.  choices are something we've been working on.  he also handed it to her so she would open the container for him, even though he doesn't know how to verbally ask for help.  he also "checked in" with billy and i a few times- coming over for a hug or a touch or some kind of reassurance in this strange setting.  that shared attention is a good thing.

he didn't make the best eye contact with her and he didn't respond to her calling his name during the session, but i'm happy that he displayed more of his good skills than his bad.

about half way through the exam finn started to get really tired.  he had been running around the waiting room showing off his stair climbing and walking backwards skills to his physical therapist before the exam, and he really wore himself out.  so towards the end of the session he grabbed his blanket and the psychologist and hugged her like "please lady, can we just take a nap now?"  it was sweet.

then the developmental pediatrician came in and asked us some questions about finn and gave him a look over.  finn was really tired by then and went into a fit of hysterical giggles playing with his talking tomcat game on my iphone while she examined him.  she thought he was pretty cute.

we go back in a couple of hours to talk to the team and hear their recommendations and the game plan.  right now finn is napping.  overall, we're happy with the way the morning went.  thanks to everyone out there rooting for us!  we love you!

evaluation

i've been struggling for a couple days trying to figure out the right angle to introduce this particular blog post.  normally when i'm feeling apprehensive or vulnerable about something it's much easier for me to just report facts.  but it doesn't make for very interesting reading.  also, somewhere down the line, i know i'm going to want to look back and read what feelings these particular facts were invoking in me.  it's a journey i want to remember, even though it's a hard one. 
maybe because it's a hard one.

over the past few weeks finn has been moving right along in early intervention.  there have been great moments- like bringing me his shoes when he wanted to go outside, learning to drink through a straw, making great eye contact with everyone- but nothing completely consistent. 

to be honest, we've had a little extra pep in our step since we scheduled finn's ear tube surgery.  ahh, ear tubes!  please swoop in wearing a cape and make everything okay.  it's so easy to look at some of finn's little nuances and say "it's his ears, it's his ears, it's just got to be his ears."  there's a big X on the calendar where halloween is- surgery day- the day he'll feel better. 
the day it'll all be better.

and then we got a phone call.
earlier last week.  finn's service coordinator through early intervention.  there had been a cancellation, and there was an opening for him to be seen by the team for his full autism evaluation screening. 

billy and i have mixed feelings about this screening in general.  if you have it done through children's hospital the waiting list is a year long.  through the county it's up to three months.  in our wonderful county, the program is the same (even the doctor is the same) as at children's.  at the urging of finn's teachers we put him on the waiting list for both to see what would pop up first.
we thought we had some time.

the purpose of having finn evaluated for an autism spectrum disorder at his young age is basically so that we are eligible for extra funding and extra help.  more early intervention services.  they really do make a difference, and the encouraging thing is that some young kids who are labeled autistic and receive a crap ton of early intervention can improve so greatly that they no longer meet the requirements for an autism diagnosis when they're older.  which is awesome. 

the thing that's kind of shitty is that, because of the way these things are funded, you basically have to have autism or an autism spectrum diagnosis to be eligible for extra help.  the doctors can't just say "well there are some concerns, we're not gonna slap him with a label, but we're just gonna give him tons of help".  they have to call it.  if they don't, they don't get the funding, and the kid doesn't get the help.

finn has a lot of the common characteristics of autism. 
he also has a lot of characteristics that are not common in children with autism. 
but he has enough of the red flags that it would be irresponsible not to have him evaluated.

it's tomorrow.
his evaluation is tomorrow.

i mean, i know it doesn't really matter. 
finn is still finn. 
what a team of experts has to say after meeting him for an hour and a half doesn't change who he is. 
and i know that- worst case scenario- he just gets a ton of help.  we just work even harder.
but gosh, it would suck. 
i mean, wouldn't it be so nice if they saw him and just said "oh it's his ears.  it's just got to be his ears."  but i know.  it's not just his ears.
80% of the children referred for a full autism evaluation by the team are diagnosed with an autism spectrum disorder.  i don't know what's going to happen tomorrow.  but the odds are we'll be walking away with some kind of paper with a diagnosis on it.  and i keep trying to tell myself that it's a good thing.  because if he really does have autism, we really do want him to have every possible resource he can.  it's just been easier not knowing, in a way.

after we found out his evaluation is tomorrow, i happened upon this youtube video.  it's worth watching.

honestly, after i watched it i thought this:
1) that chick is awesome.
2) that violent dude with the rad hair is pretty cool.
3) little figurine game playing guy is a little different, but i mean he's alright.  i could handle it.
4) the bubble boy!
oh please, let finn turn out like any of them but the bubble boy. 
i don't know if i could handle the bubble boy.

i know, i'm awful.  because the bubble boy is pretty freaking cool.  but hard.  his mom's life is hard.

then, a couple of days later, i came across this article about a little boy that, aside from his behavioral problems, sounds exactly like what we're going through with finn.  and they are from our county! with the same services! and what a success story! 

it's just scary because you don't know what you're going to get with autism.  everyone's is different.  some forms are more functioning than others. 
and there are so many things that finn does that i've just always wanted a professional to say "oh no, that's not autism, that's just bla bla bla." 
it's easy to make excuses for him.  to think he'll grow out of it. 
every night i dream that he talks.  literally every night. 
in some ways, i feel like if they tell me tomorrow that they just don't have enough evidence to label him autistic, but we're going to keep working with him, i feel like his future would seem so much less scary.  so much more hopeful.  but if they tell me it's something, what's ahead just seems so ominous.  but i guess what's ahead is always that way.  we never really know, do we?

so the past week i've been a pile of nerves.  (i mean, can't you tell by this insanely disoriented blog post?)
but then today was this wonderful gift.
finn and i just had the best day together.
we went to the park, and for the first time ever, he played on the playground. (not just the swings!)
he climbed up the little stairs and went down the slide! by himself! THREE times!
we played a game together... we took turns running down the hill of a little ditch and climbing back up.  he would gently push my back when it was my turn.  sometimes we would hold hands and do it together.  he was so thrilled and proud when he ran down by himself and didn't fall.
we went home and played, and he got a case of the giggles and just died over everything.
he grabbed my neck and hugged me and kissed my hair a hundred times.
and i just felt so... full. 
and happy.  and relieved.  and hopeful.
because, he's mine. 
right now, in his little 19 month old world, i am his very best friend.
oh, for everyone to know what it feels like to be loved the way this little boy loves me.
it's everything.
and it doesn't matter what he has or what he does or what anyone says about him. 
because i know who he is.  and he's wonderful.

we are hoping and praying that tomorrow finn wakes up feeling great, and is at his best during the evaluation.  we are also hoping that the team of doctors and professionals working with him and evaluating him will be able to see him for who he really is- all of his wonderful parts and all of his struggles- and that they will be able to suggest the best possible interventions for him individually, to achieve the best possible outcome. 

thank you so much, to all of our friends and family, who take the time to think of him, and pray for him, to send your positive thoughts and hopes his way, and who care so much about all of us.  i'll update the blog as soon as i am able.
 
we are so blessed to have this little boy.  i really don't know how i got so lucky. 

pointing, and our three month review.

finn's three month review is coming up at the end of the month.  
it's hard to believe that he's been in early intervention for three months already! 
but talking with his teachers this week about his progress has been really encouraging. 
yesterday his special instruction teacher said he is like a totally different kid than when we started.  and it's true! 
i'm so glad they can see the big differences even though they only spend an hour a week with him.

it could get a little lengthy and boring to talk about the full span of finn's progress, so i thought i'd focus on one of the many big improvements we've seen because of early intervention and hard work: 
pointing!

pointing is an important developmental milestone because it displays this wonderful thing called "joint attention" which i've talked a lot about. 
it means your baby wants you to see what he sees, and wants to bring you into his world.  
sharing an experience. 
it's all part of the very beginning of learning how to relate to others and the world around you.

when we started early intervention, finn could not point at all. 
when i say he could not, i mean not only did he not point at things, but he physically had no idea how to make his hand and fingers into a point. 

one of the first activities we did with finn was using hand over hand to have him point to pictures in his favorite books as we read it. 
this task was SO difficult for him that we had to adapt it so that he just had to smack the picture with his palm. 
for me, trying to form his little hand into a point was virtually impossible.  he would make all of his fingers rigid or make all of his fingers loose.  he just didn't get it.  so for a few weeks i just grabbed his hand and made him smack the pictures instead of point at them:
"on monday, the caterpillar ate one apple! can you touch the apple?"
< smack >
"yayyy that's the apple! good job, finn!"
< kicking/whining/fighting >

after a few weeks of that, finn started letting me make his hand into a point to point to pictures.  he didn't fight it- he actually wanted me to help him do it. 

then a few weeks after that he made his hand into a point by himself and i just had to guide his wrist to point to the picture.

then, a couple of weeks ago he started pointing to some pictures by himself.  hooray!

i wanted to mention the pointing skill specifically because we have found one tool that reeeaaally is motivating for him and has turned him into a pointing master. 
and believe it or not, it's an iphone app!

finn likes to watch youtube videos on my phone... like disney songs or sesame street songs... and he taught himself how to open them and hit play from watching me do it. 
it's a pretty finite pointing skill to do that, so we thought we'd expand on it. 

his speech therapist told me about the app "peekaboo barn". 
it's a little barn that has doors that open up when you tap them. 
every time the door opens it reveals a different barn animal (i think there's around ten) and it makes the animal noise and then says the name of the animal, as well as the printed word of the animal on the screen. 
finn LOVES this game. 
and i love it, too!  it is teaching him to use his pointing skills, he has to give something to get something... (tap the door in order to open it and tap the door in order to close it for another animal), and he is learning animal names! 
i really recommend it for any toddler, especially one in early intervention. 
finn's face just lights up for this little game, and he will find my phone and bring it over to me so that he can play it.  (bringing us things is another very recent skill that we are loving!)

such a funny little thing like playing a simple game on my phone doesn't seem like much, but when i look back to two and a half months ago at the little boy who literally couldn't make his fingers into the shape of a point, and i see him now pointing his little way through a barn full of animals, i see how far he's really come.

a lot of times in early intervention it's hard to see the big changes day to day, and it's hard to feel like you're making much progress at all, but i think that's why they have the little three month reviews.  
because when i look back that far, he really has come a looonnnnggg way. 

we are so so grateful for our awesome team of early intervention teachers who push finn (and me!) to our limits because they believe in him and know he can do it. 

like i said, pointing is just one of the little examples of his progress. 
we are seeing such big changes with finn across the board. 
little toys that he used to zone out on or flick or spin, he now plays with correctly and brings them to us to show us or ask for help with it. 
he uses a fork, he brushes his teeth, he makes eye contact, he is more comfortable exploring his surroundings and can climb up and down the couches and the stairs. 
these are all things that he literally could not do, was scared to do, fought us over, and completely resisted three months ago. 

i really feel like we were successful in identifying some pretty scary early warning signs and "sticking our foot in the door" before it shut. 
some days i feel like i'm getting the door to open up a little further, some days i feel like it's standing still, and some days i feel like i'm struggling to maintain the little space that i have. 
but when i look back to three months ago, it is so obvious that we have pushed that door open big time. 

finn has to work a lot harder to learn new skills than a lot of other kids his age. 
he doesn't just "pick up" on things and acquire new skills, he has to be taught them. 
even the little things. 
but he tries SO hard and he is so happy with himself when he learns to do something new! 
we are SO proud of him! 
way to go, finn! 
here's to another awesome three months!

ear tubes.

in case you didn't read the subject, this post is about ear tubes.

full disclosure.

you know what you're getting yourself into.

i don't want any complaints about the boring ear tube post.  i warned you.

this blog is gonna be a reeeeaaaal page turner. 

i can see you now- on the edge of your seat. 
ready to hear all about ear tubes. (intentional pun)

anyone still around?  anyone?  okay then.  this one's for you there in the back, avoiding that other more important thing you're supposed to be doing.

here we go!
ear tubes seem to be pretty popular these days.  it's a nice option that doctors put on the table.  live in misery and on constant antibiotics, or have this quick procedure to have tubes put in your ears. 
i'll take it.

i come from a particularly mucus-y family (seasonal allergies represent! can i get a what what! and by what what i mean kleenex! actually just pass the whole box one is not going to cut it! thanks!) and billy and i have ear tube kids on both sides of the family.  everyone we talk to about ear tubes loves them.  and why not?  it's a great solution to help ears drain on their own so all the fluid that builds up in your poor mucus-y kid's ears doesn't get infected and make everyone miserable. 

and i mean everyone. 
the whole family suffers from infected ears. 
yeah, tuck, i'm looking at you.

ear infections cause extreme grumpiness throughout your entire house.

so last fall, we found out that our baby inherited two popular familial traits:
1) extreme awesomeness
2) extreme mucusyness.  i'm making that a word. 

and for the trifecta, he also happened to be one of the super lucky that has ears perfectly designed to store fluid perfect for a bacteria breeding ground. 

in other words, he gets ear infections.

last fall we had three and a half solid months of back to back ear infections, antibiotics, high fevers, e.r. trips, and lonnngggg long sleepless nights of taking turns holding finn upright in a steamy bathroom so that he could sleep.  it was a blast. 

then, in december, he got ear tubes.
here's the funny thing about our experience with the ear tubes-
after we got them, finn's ear infections stopped. (as expected)
BUT
his ear tubes never worked. (huh?)
meaning, every time we went back to the doctor for a follow up, his ear tubes were clogged.
so, by some miracle (the end of fall and a mild winter) finn stopped getting sick.
but not because of the tubes. 
they were just kind of in there not doing their job.

every three months since december we've gone back to the doctor for a follow up hearing test and to check on his tubes.  every visit has been the same- tubes still clogged but no fluid in his ears, so no need to replace them.  every hearing test was ruled passing but "borderline" whatever that means.

until last week.
i took finn back to the ear doctor for his three month follow up and whaddaya know, with the arrival of fall came the arrival of fluid! 
welcome back ear fluid! i will think of you every time i think of pumpkins.  awesome.

turns out one ear is full of fluid, and one ear is full of so much pressure that the tube in his ear is smashed up against his ear drum.  and yes, i'm sure that feels like shit.

he also had a weird hearing test.  he responded well to voice, but did not respond well to sounds.  his ear drum didn't react the way it was supposed to either.  the audiologist said she thought finn should be hearing better, and that she thinks it is part of the reason why he's not talking.  maybe not the whole reason, but part of it.  interesting.

so, the good news is, finn is getting new tubes this month! we are really encouraged and hopeful that this next set will actually work.  and we're hoping that we see big improvements in his balance and motor skills- and hey, maybe if he can actually hear things right and isn't in constant ear discomfort, he might even start talking!

the bad news is, his surgery is on halloween.
this is bad because we have to wait the full month (we're already on our first batch of amoxicillin), and because halloween is a crappy day to spend in the hospital.
last halloween finn was fresh out of the e.r. after a week of 105 fevers that were misdiagnosed as a "virus" and turned out to be- what do you know- an ear infection!  he was full of i.v. strength antibiotics that came with a bad case of the runs, and then to make matters worse i stuffed him in a bear costume and drew on his nose with eyeliner.

so yeah, after this year he'll probably hate halloween forever.
sorry, bud.

but we're really excited about our second shot at ear tubes. 
finn's doctor assures me that it is incredibly rare to get two sets of chronically clogged tubes, so we know this set is going to do the job. 
and after the year he's had, this kid deserves a break. 

we hope he wakes up on halloween feeling a whole heck of a lot better!

this concludes the post on ear tubes.
you're excused.
i know you have more important things to do now, like look up crock pot recipes on pinterest.
it's fine, i understand.

but if you're still procrastinating you should check out this blog that my friend amanda told me about because you will probably pee yourself. 

bye!

awww.

two cute things happened this week that i couldn't not mention.  they were just too cute.

they weren't goals we'd been working on, they weren't developmental milestones, but they were sweet.

gosh, were they sweet.

cute thing numero uno:

i was sitting in finn's room playing with him when my mom called.  i forget what we were talking about, but it was something distracting enough that i only had half an eye on finn.  sometimes he takes those opportunities to do cute things.  (he gets a little shy about it when we're playing one on one.) 
so i'm chit-chatting away with grandma, when i see finn go over to his animal puzzle and pick up one of the puppy dogs from out of the puzzle.  he carried him over to the rocking chair and sat him up against the pillow just perfectly, along with his favorite doll (chuckanucka- he's an ugly doll) okay chuckanucka was upside down, but the dog was just perfect.  and once he had them sitting together just right, he stood there and rocked those little suckers!

it was SO darn cute. 
he didn't put a ball up there, or a block, or a binky.  he put the puppy dog up there.
i was proud. 
you go on and nurture those wooden dogs and ugly dolls, baby.  you just go right on ahead.

cute thing numero dos:

this one is even nearer and dearer.  but alas, i didn't get a picture.

wednesday afternoon i went in to get finn from his nap and almost fell over when i found him sitting up cross legged in the middle of the bed
reading
a
book. 
spread out on his lap turning the pages. 
he had apparently rescued a few picture books off of the chest next to his bed and pulled them in through the crib slats for a little bookworm time. 
could i have been prouder?  i think not. 
an enthusiastic reader ranks almost as high as an enthusiastic sleeper in this house. 
almost.

is he just the sweetest thing, or what?  he may not be up to speed with all of those other toddler milestones just yet, but gosh if he doesn't rank off the charts in the sweet category. 
i could eat him with a spoon.

little stone.

the farther we go down this road of early intervention with finn, the more i am starting to notice how differently he sees things.  i work on a lot of specific tasks and activities with finn every day, but i also observe him a lot during his down time.  i'm starting to pick up on the things he sees.  things that are obvious and distracting to him are not obvious or distracting to me.

it's hard for me to describe this, so i took a little video of him.  this particular video features finn doing one of his recent favorite activities- walking up and down the driveway.

finn likes to look at the cars in the driveway and he likes to play with tucker.  sometimes finn will go up to my car and if i ask him to touch the license plate or touch the bumper or touch the light, he will do it.  but more often, and as you will see in this video, i will ask finn to touch the license plate and he'll look at it (which you can see him immediately do by the back of his head moving up), but then he'll get distracted by something else.  something that he just can't seem to get past.  in this video, he's distracted with the little bumps in the plastic on my rear bumper.

another thing that's funny to notice in the video is when finn turns around to see tucker.  tucker is really motivational for finn- he loves to follow him around, touch his tail, touch different parts of his face, imitate him panting, etc.  in this video he hears tucker's collar jangling behind him and he turns around to see him, but as soon as he turns around he immediately sees his shadow on the driveway and becomes so distracted by it that he ignores tucker completely.

you'll also see him enjoying looking at the oil spots on the asphalt, and the way his binky rolls back and forth when he drops it.

sometimes finn's weirdness disturbs me.  but most times, it really amazes me.
there is something really beautiful about the way he sees his world.

because finn sees things differently than i do, he really resists doing his early intervention activities with me and with his therapists.  he is not cool with sitting down and doing a puzzle or stacking blocks or pointing to different body parts when it's under our terms.  a lot of times i think it's because he's stubborn.  but i'm also starting to think that a lot of it is stupid and boring to him at first.  he doesn't want to sit down and stack blocks when there is something else really interesting going on (like that little string on the blinds that moves back and forth a little bit in the breeze... how do you guys not see that?)  the good news is, that after i force finn to go through the motions in some activity that is completely uninteresting and frustrating to him, he secretly starts to enjoy it.  about halfway through doing a puzzle his cries of protest turn into half laughs.  then 20 minutes later when i'm not making him do it, he'll go over and start trying it out by himself.  once we show him how to do it, he starts to like it a little bit.  but it's not obvious to him.  other things are.

while it's encouraging that finn is eventually receptive to learning different skills, it's also apparent to me now that teaching finn new skills isn't ever going to change who he is.  hopefully early intervention can help him learn some basics that aren't so basic to him, and those skills will help make his way through life a little bit less challenging.  if he learns to problem solve now, if he learns to ask for help now, if he learns to communicate and engage with others now, then hopefully down the line he won't feel as isolated or misunderstood.  he'll have those early tools embedded in his brain that we're working so hard on placing there now.

he will probably always see things a little differently. 
and i'm not okay with that.
i'm more than okay with that.  i'm proud of that.  i'm glad for that.  i love that.

on sunday finn found a little stone that was out of place laying in a section of mulch.  he noticed it and picked it up right away.  he rolled it over in his hand and thought about it for a minute.  it was interesting to him.  then in a tiny instant i saw his little mind work at something... he pulled his gaze away from the stone and looked at me.  and then- with some obvious effort- he handed me his stone.  he saw something different that i didn't see, and he wanted me to see it, too.  he shared it with me.
that's never happened before.  it makes it all worthwhile.

a year and a half!

happy 18 months, finn baby!

today happily marks the six month mark until i no longer have to refer to finn's age in terms of months.

after two, that's it.  he's two.  or he's two and a half.  or he's three. 

gosh i hate these month age referrals. 

and the parents who refer to their kids' age in terms of months long after it's appropriate. 

oh, little jimmy is 49 months old. 

seriously? your kid is four.  now stop that.

the past six months since finn turned one have been tough ones indeed, but happy ones as well. 
we sure do love our little dude.

saturday finn learned to play drums with the actual drumsticks!
he used to just bang them like bongos, and showed no interest in the sticks. 

he was really proud of himself and his new found talent, so he carried the drumsticks around for a while.

i'm not quite sure we can call him a rockstar yet, but it's a step in the right direction! :)

more updates soon... i have to cut this one short because we are dealing with new molars this week and all of the joys (read shitty diapers and crummy attitudes) that come with them!  wheee!

i'll leave you with some happy finn baby beach pictures. 

vacation yayy?

having a baby does something to your brain.  something horrible.
vacations suddenly change from welcoming lights at the end of the tunnel into foreboding storms looming on the horizon. 

you find yourself thinking: "oh god, not vacation." 

your mind turns into a constantly running checklist.... "must bring pack and play, portable high chair, jogging stroller, a bazillion toys, a bazillion changes of clothes, baby sunscreen, baby hats, snacks for the car..." so much gear.  so much preparation.  mind becomes hazy.  mental checklist is pushed to the back of your brain as you reach for the wine. 
oh god, vacation.  anything but vacation.

billy was in the kitchen the other night and made the mistake of making small talk with me about vacation.

billy: "hey babe i checked out usair they've got some really great flight deals right now to wilmington."
meg: "WHAT!?"
billy: "yeah they're only like..."
meg: < hysterical high pitched laughter >
billy: < turns pale >
meg: "ARE YOU CRAZY!?!?!  WITH FINN!? YOU WANT TO FLY WITH THE BABY!!! WHAT ABOUT THE HIGH CHAIR? WHAT ABOUT THE STROLLER? WHERE DO WE PUT A CARSEAT? WHAT ABOUT HIS TOYS? WHAT ABOUT THE ..."
billy: (quietly to himself) "people fly with kids all the time..."
meg: "CRAZY PEOPLE! CRAZY PEOPLE FLY WITH KIDS!!!" < hyperventilating > "WHAT ABOUT TUCKER! WHAT ABOUT THE DOG!? HOW DO WE TAKE THE DOG TO MY PARENTS IF WE'RE FLYI..."
billy: < backs slowly away >
meg: < brain explodes >

i wish very frequently that i was a non stressing non list making mom who threw a floppy hat and a towel in a beach bag and jumped into the car without a second thought. 
(billy's mom tells me stories of driving from new york to florida in a station wagon with 4 adults and 6 children under 8.  and flying to hawaii with twin two year olds.  there's more trip stories but i can't remember them because the oxygen stops reaching my brain halfway through.
what?
how!
where did... how did... when did....
*blacks out*)

we're going to the beach for a nice relaxing family vacation over labor day.
i've been chewing my nails and organizing clothes and eating boxes of homeopathic anti-anxiety pills for a week just to get to the comfortably frazzled mental state that i currently reside. 
vacation?  hahaha, oh vacation! yes we're going on vacation! 

the good thing about this upcoming vacation is that it's going to be of thanksgiving and christmas proportions in terms of the amount of family per square foot.  when things reach this level of chaos i normally short out, my brain resets, and i'm completely fine... except for the facial tick i get whenever i have to go pee and realize i'm sharing a bathroom with 6 pre-pubescent boys.   funny enough, it's at this crazy point when i throw in the towel and commit to riding out the wave of vacation on auto pilot that billy typically loses it.  talking him off the ledge helps me maintain some mental clarity, so it actually works out.  (look who's crazy now, sucka!!)

despite the pre-trip packing stress, all the little details to remember, the enormous amount of family, the smell of the bathroom, and the baby to take care of, i am feeling strangely excited about this vacation.  finn hasn't been on the beach since he could walk, so i know he's going to have a blast.  and i'm really excited for him to be surrounded by cousins and loved ones and chaos for a few days... he tends to thrive in that environment.  i feel so blessed that we have the opportunity to go on this trip, and i'm looking forward to the memories we'll make. 
i think we're gonna make some good ones. 
even if we have to start to drinking bloody marys at 9 a.m.

Little goals.

Finn has being doing so well in his first couple of weeks with Early Intervention.  There have been so many little moments that have been SO big for him, and we are so so encouraged. 

Rather than rattle off my long mommy list of "omg Finn did this!", I thought I'd focus on a couple of things we have been working on and are especially proud of!

I personally do well working on specific goals every couple of weeks for Finn.  It helps me focus and makes things a little less overwhelming.  So two weeks ago we started working on brushing Finn's teeth and having him use a utensil to eat.  These were tough goals for us because Finn wanted nothing to do with either. 

The tooth brushing- forget it.  Finn didn't cut his first tooth until he was 10 1/2 months old, so I didn't even get him a toothbrush until this past April when I was shopping for his Easter basket. 
God he hated that toothbrush. 
Every morning he would come into the bathroom with me and smile as he watched me brush my teeth, and then as soon as I came near him with his little toothbrush it was all over.  I don't know what he does to get his lips to close that tightly, but it was harder than prying open a jar of pickles to get into his mouth.  Impossible.
His early intervention teachers encouraged me to try different approaches- use my toothbrush, use an electric toothbrush, try different toothpaste, offer a reward, don't give up.
Lucky for me the very first thing I tried worked.  I put a little bit of his baby toothpaste on MY toothbrush and he was willing to try it.  Then I added the "special reward" of getting to drink a sip of water out of a little paper bathroom cup, and he was sold.  (Finn loves to drink out of these little paper cone cups they have at the water station at our pool, so I thought he might be excited about the little paper bathroom cups and I was right!) 
He loves to brush his teeth now and it's amazing to see what a little creativity and determination can accomplish.

The goal of having Finn use a utensil to eat was a little different.  I know that technically Finn is still pretty young to be eating with a spoon or fork all of the time, but the goal here was for Finn to use an object correctly and understand it's purpose. 
Finn has always been a great eater and will eat very nicely off of a spoon that I am feeding him.  But when I tried to turn the job around and use hand over hand to make him hold the spoon, it was a nightmare.  Lots of morning outfits ruined, and lots of pissed off Finn faces. 
So I decided to bring in a new utensil- the fork! 
I thought he might like a baby fork better because he could stab his little pieces of food and see a clearer cause and effect than he might with a spoon.  The baby fork was met with some apprehension, but with lots of over the top encouragement and sound effects we won him over. 
Yesterday he started doing it all by himself.  Billy literally saw him look around to make sure no one was looking before he used it.  This morning he let me take his picture. 
Lazy baby- you're busted!  I will spoon feed you no more!

I love these little goals because I can look back to two weeks ago and see clear progress. Way to go, Finn!

It's fun to see him learn and for me to learn how he learns.  He forces me to be creative and I like that. 

One of the funniest things I've noticed the past two weeks is that with all of the hand over hand modeling I have been doing with making him point and use a fork and wave and everything else, Finn has really picked up not necessarily on doing what I'm making him do, but on using hand over hand.  He loves to use hand over hand on me now!  If he drops something he will come get me, grab my hand, and put my hand on what he wants me to pick up.  Like he is modeling it for me or something!  I'm the teacher, baby!  Sheesh!  I have to laugh, because he's smart as a whip in the weirdest way. 

My next goal for Finn is getting him to use his hair brush and getting him to do a simple puzzle.  Because what's more important than good hair and problem solving?  ;)  Thanks for checking in on us!