Expectations Vs. Reality

Having a child with learning differences and functioning on the spectrum doesn't leave much room for a script.  Planning is good, but the days rarely go as planned.  Meltdowns don't wait for a private viewing audience in the comfort of your own home.  Homework cannot happen at the same time every night.  It can't be timed from start to finish because sometimes the focus and concentration is just not there.  Sometimes the focus and concentration never show up!  Pushing and forcing only makes it worse.  It takes a lot of patience and grace....for all of us.  I need to be patient with myself just as much as I need to be patient with my child.

We all have that cookie cutter dream of what it's like to raise a family.  Goodness, there are even books entitled, What to Expect When You're Expecting and What to Expect the First Year, What to Expect the Second Year, etc.. If we are too fixed on expecting things to happen just as the books tell us they should, we will be sorely disappointed.  It is really as unrealistic as expecting to see two snowflakes that are alike.  There is no such thing!

     Our youngest child was an unusually fussy baby.  He would cry at the drop of a hat, and once he started, it was difficult to get him to stop.  It would take him for what seemed like forever to nurse, so that by the time he was done, it was almost time to start all over again.  I tried to pump, but he couldn't physically suck from a bottle.  There was no solid sleep schedule.  We all welcomed sleep when we could!  He never crawled, and every milestone came much later than average.  When he did start to walk, his feet pronated inward, causing him to walk on the insides of his feet.  He needed orthotics for years to give him additional support.  Things seemed to be looking very different from what I had come to expect and from what I experienced with my other two children.

     The path for his educational journey seemed to be as unique as the rest.  We did the "preschool thing" for half of a year, but discovered that they were unequipped and unprepared to manage his unpredictable outbursts and behavior.  We tried homeschooling, but couldn't seem to complete a full school year.  After three years of schooling at home, he finally got more than half way through the First Grade curriculum.  At the end of his 2nd Grade year, and what we felt like was the end of our rope, we finally decided to start looking for some answers.  That is where we found the beginning of a BEAUTIFUL journey; a journey carved out only for him.  I quickly found, though that this journey was difficult to plan for.  I couldn't script it out and I had no idea what was coming next.  Nothing really has gone as planned, but I'm ok with that!  I have learned that when we try to compare where we are to where we "think" we should be, it only leaves us standing with disappointment and a feeling of failure.  We are taking it year by year, month by month, day by day.  We are learning and navigating together...moving along at a pace just right for him.

I write this to encourage you, moms and dads.  Your child's journey, is unique....WILDLY beautiful.... sometimes mysterious, but OH SO REWARDING!  Celebrate each moment in its individuality.  Champion on as the advocate for your child, leaning into the advice of wise council and experience, but being ok with it not turning out just like it looks like on paper.  At the end of the day, it'll be a glorious unfolding of a story that belongs to only your child.  A story that you're walking out together.  Keep on keepin' on, my friend.  YOU. ARE. AMAZING!

Beauty in the journey ...

The term "stop and smell the roses" isn't about making friends with the local florist or all of the sudden developing a green thumb.  It's about living your life with a deeper appreciation for the world around us.  It's about noticing the little things and slowing down to enjoy each fleeting moment.

This guy right here has taught me to do just that.  He does NOT have an agenda.  He's not limited by MY to-do list nor does he care to check off any demands on his own.  He lives fully in each moment, soaking in all that it has to offer.

He has always been fascinated by nature.  He's grown up visiting the Aviary and the Zoo and has developed a unique appreciation for ALL animals.  He knows birds and butterflies by name and will find the beauty in each creature no matter how unsightly mom might think they are.  There was one particular instance where he said, "Mom!  Come look at THIS!"  The sight of the creature made me jump back.  It was ugly and frightening and I really wasn't sure what it was.  To my eye, it was...well....UGLY.  His next words stopped me in my tracks.  He said, "Mommy, isn't it just beautiful?  Look at how special it is!  God actually MADE this!" 

Wow....talk about eating humble pie.  Yes, it IS quite special, dear boy.  Every creature in all of its glory handcrafted by the one who formed the universe.  He has made EVERY creature ON purpose, WITH purpose and FOR a purpose.  There are no accidents in the hands of the creator.

Thank you, Caleb....for causing me to see the beauty in creation.....Thank you for helping me to stop and smell the roses: To see the beauty in ALL of life.  God doesn't make mistakes.  There is a glorious unfolding in all of our journeys.  We just need to open our eyes and ask Him to show us.

Job 12:7 “But ask the animals, and they will teach you, or the birds in the sky, and they will tell you; 

8 or speak to the earth, and it will teach you, or let the fish in the sea inform you. 

9Which of all these does not know that the hand of the LORD has done this? 

10 In his hand is the life of every creature and the breath of all mankind.

A String of Rough Days....

We have had some really, REALLY rough days...  A rough couple of months actually.  Complete shut down and refusal to do work.... Lots of excuses.... Avoidance.... ESCAPE....                                                                                        

Impulsivity and a series of poor choices led to some serious consequences both at school and at home.  Anxiety is at an all time high, emotional outbursts and episodes are happening more frequently (several times per day) and self-regulation is almost non-existent.  The behavior is hindering his learning and has become a distraction for the other students around him.  Decreasing confidence and diminishing self-esteem have stolen any initiative that he has been putting into his learning and goals.  

We are facing some tough decisions.  One option that we have discovered is a partial placement program through a local hospital.  This program is an out-patient program and will allow him to do school work on site, and will provide more intensive behavioral therapy and emotional support.  The program will last throughout the remainder of the school year, giving him the summer for a much needed change of scenery and a system reset...  Praying for good things.  Maybe they'll help us find his smile again... I sure do miss it.

We learn from our challenges.  We grow because of our bad days.  I still believe that God is working in my son....I still believe that he is moving toward a destiny and purpose designed just for him.....  

So here I sit and type the words...  WE HAD A BAD DAY... (I totally know you're humming the song in your head now!)  Just because we have a bad day (or a bunch of them in a row), doesn't mean that what we are doing isn't working.  It doesn't mean that we need to start again from scratch.  That just means we take some extra breaths...Take an extra long hot shower...Cuddle a little longer...Get some extra sleep that night and do it all again in the morning... TOMORROW IS ANOTHER DAY.

I know in whom I have believed, and am convinced that he is able to guard what I have entrusted to him until that day.  2 Timothy 1:12 

I'm not moved by what I see...

not moved by what I feel...

but I am moved by the very Word of God...

the TRUTH.

Keep on keepin' on, my friends.  It's a marathon, not a sprint.

Autism Awareness Month

     

April is Autism Awareness Month.  Actually in our home, though, it's every day of the year.

Autism looks different on every kid.  Like a snowflake, each one unlocking beauty to a world you might not otherwise see... Steve M. Shore said it perfectly when he said, "If you've met one individual with autism, you've met one individual with autism."  It sometimes shows up right away in ways that are screaming you in the face.  Other times, it's a quiet shadow hovering, leaving you wondering if you've missed something.

Caleb's diagnoses came after a few years of being chased by that shadow... I didn't know what to look for, didn't know who to call...I just knew that something wasn't quite right...I knew my son was in there, but couldn't quite find him.  A friend put me in contact with an autism supervisor with Western PA Psych Care.  She turned out to be an angel sent to us from God and became a very dear friend of our hearts...for life.  She spent an hour and a half of her own time, listening, sharing and guiding me with what next steps to take... I didn't know that the end of that conversation would be the beginning of such a beautiful journey with my son... A journey that would provide constant learning and growing.  Ignorance will keep people in the dark, but knowledge will bring power.

I know that people say that it's not good to put labels on kids.  We don't.  Caleb is not autistic.  He has been diagnosed with autism.  He is not broken, defective or challenged...He is beautiful, different and challenging.  He is a wonderful, mysterious, amazing, bright kid, full of endless possibilities that happens to be going about life in a different way ... 

I'm quite fond of him.