What it's all about

Thursday, December 20, 2012

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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3 comments:

Jean Isaac said...

Meg, this is another wonderful blog. I know you are so busy with Finn and other home and work duties. The ability you have to write so well and keep everyone informed about Finn's wonderful progrss is heartwarming. I love you all and can't wait to celebrate Christmas with you. You, Billy and Finn are always in my prayers, my heart and my mind. Love Meem

Kayla said...

There are actually two variants of SPD. Hyper and Hypo sensitive. I have the hypersensitive form of SPD which means when I was a baby I would cry and try to escape people touching me or squeezing me. I'm sensory defensive and I don't process input properly. I hear normal talking sometimes like jet engine loud or my own shirt can physically hurt me(sometimes cotton feels like a knife). It's effed up.


Also, I think the SEE is super cool. Even if he becomes entirely verbal, don't discourage the signing. That is just more communicative abilities to add to your repertoire and objectively makes you smarter. I've actually been considering learning either SEE or ASL myself.

Taylor said...

The food analogy makes so much sense! I love that you can help him by giving him tight hugs; all the more reason to squeeze that sweet little guy! This is random, but have you ever read the Harold and the Purple Crayon books? The little boy draws his story and when I was reading one to Waverly the other day Finn popped into my mind. I love how the character sees the world differently (brilliantly! artistically!) and how it makes his stories funny and special. Also? Love the pic- he is such a little GQ baby!