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.