Monday, December 3, 2012

A New Day

“Dear God…thank you for the food in our bellies, and our warm house to sleep in.  And please, God, hold my hand while I sleep and not make me have any nightmares.  And please help me to have a good day at school tomorrow.  In Jesus name, Amen.”

Every night.  Every single night these are the words that Ben sends up to God.   Okay maybe a few small additions here and there depending on his mood…but for the most part, his big concerns weighing on his sweet little heart at night are (1) uninterrupted sleep and (2) a good day in school.  And for him they are big, big worries. 

Ben with his little monkey circus of snuggle buddies.
I’ve spent so many evenings kneeling at his bedside, convincing him that he will get through the night peacefully.  That his magic blanket and God holding his soft little hand will keep him protected and asleep until morning.  I know how frightened he is each night.  I too suffered through frequent nightmares.  I taught him a few years ago, what was passed down to me by my grandma…if you pray to God and ask him to hold your hand while you sleep you will dream peacefully.  It worked on me so I had to try with my Ben.  It worked.  Sometimes.  Adding the weighted blanket to bedtime also helped tremendously.  The two together have given him something to believe in and have lead to much more restful nights than in the past.   He hands that worry over to God and that warm brown blanket every blessed evening.   That improved rest is truly a gift and is aiding him in his second most important quest…to have a good day at school. 

They did a writing project where they shared what they are scared and brave about: "i am Brave uve the Darck."
Ben has been through quite a bit in recent years.  He is now in his second year in this elementary school, which is the longest he has been in one building since he was a toddler.   He has been through assessments, evaluations, observations, medications, various teachers, aids and specialists.  Sadly (or maybe not) he is just accustomed to it.  He’s been in and out of psychologist, social worker, psychiatrist, school principal’s offices more times than he can likely count.  Although, now that I think about it he probably could give me a fairly accurate tally.  It’s his world.  It’s been his world.  Why?  All in a quest to get an answer.  To get a label.  To get help.  God, we needed that label.  To guide us.  To validate my gut feeling…to make me feel sane.  Today we learned that due to a significant change to the DSM (Diagnostic and Statistical Manual of Mental Disorders), there no longer IS an Asperger’s diagnosis.   There goes the label.  The label we just worked so hard to determine.  There is some hubbub around this change.  Some fearful.  Some thankful.  Some identify so strongly with the label and have taken it on as a part of their being.  God, I get that.  Part of me feels like I should be more concerned with this change.  Maybe once I know more.  But for now, I go back to the reason for getting that label to begin with: help. 

This fall we finally had Ben’s first IEP (Individualized Education Program) meeting.  After having heard and read multiple horror stories, I won’t lie…I went in with guns a blazin’.  Ready to fight for Ben.  Not a bad thing, I suppose.  Turns out, after all, we got pretty lucky.  Our school psychologist is a phenomenal caring and very thorough woman.  His teacher is bright, observant and very flexible.  His speech therapist is fabulous as well.  In first grade there aren’t many academic accommodations necessary but they’re now doing social language therapy with him.  They have purchased a weighted blanket for his classroom.  His teacher has made adjustments to her timed tests for Ben.  They want to see him succeed too.  It was quickly apparent how fond they all were of my baby.  He makes them smile.  He makes them proud.  They look forward to engaging with their “little old man”.   I know for certain not all families can say they’ve been blessed with such resources.   I’m grateful.  Completely.  Truly.

So for some, it’s the label.  For me, it’s access to resources.  For Ben…well for him, simply put, it’s about having a good day.   He doesn’t know what Asperger’s is.  Whether the label exists or not he DOES know when kids aren’t nice to him.  He knows when they don’t want to play what HE wants to play.   He knows when his teacher is frustrated with him.  He knows when he just wants to barricade himself in a corner and can’t.  He knows he wants to bring home a good citizenship grade every day.   More often than not, he doesn’t.  He typically spends our ride home explaining what his warnings were for.  I work so hard to reassure him that the grade he gets each day for his behavior doesn’t equal his worth.  He spends his afternoon decompressing, reading, playing video games just to forget the chaos of the classroom.  He often goes to bed begging me not to make him go to school the next day.  And I smile, and kiss his sweet face and tell him tomorrow is a new day.  A new day with a new chance.  A new chance to make friends…to finish the math test…to not put his hands on his friends…to not get upset about eraser marks on his spelling test…to not cut in line.  It’s worth getting up every single day to get that chance again, isn’t it? 

Decompressing with some Angry Birds after a rough day at school.
This is one of many shots I've captured of him
running up the school steps in the morning.
He thinks so.  Despite his frustration and fear each night at bedtime, that boy rises with determination.  Not always with a smile…typically, he’s actually quite exasperated from dealing with me by 8am and ready to get the day started.  And THAT day, EVERY day, starts with this boy bounding, dare I say sprinting, down the sidewalk and up the steps to his school doors.   And every day it gets me…with that damn lump in the throat.   Despite his daily difficulty and never-ending struggles just to get from 9am to 3pm he attacks the day with such fervor that I find myself sitting in my car…watching with tears.  Admiring his enthusiasm.  Ignoring the impatient drivers behind me creeping closer to my bumper.  Asking myself each time…”why don’t I do that?”  Why when I get up and move myself to prepare for the day do I not have that same resolve?  To face my anticipated struggles head on…determined to take advantage of new chances and a fresh start?   Some days watching his determined, stinky little self race his brother to the top of the steps really makes me want to do better.  To be better.   To run toward MY day.   And I am grateful for every new day…every fresh start. 

Do you run toward YOUR day?


  1. You, my friend, are amazing. Ben is amazing. Your writing is so heartfelt and true. I am sitting in that car with you watching your dear Ben bounce up those steps. I love you so very much and admire how hard you fight for Ben. xoxoxoxo

  2. He is so blessed to have you as his mom. Like YKIHAYHT, I am in that car with you. xoxo

  3. I can't add anything that these two ladies didn't. I agree. Great post.

  4. tears. I cannot tell you how beautifully you capture your love for him and your beautiful son. I learn from you and your spirit every damn day. thank you so much for sharing him with us. what a gift. and yeah, I'm in that car too.

  5. SHOTGUN! I'm in the car too...
    With his spirit and you as his mom - that precious Ben is going to do amazing and great things.
    Continue to sieze the day Benji Boy. It will all come back to you..xo
    Bad dreams bad dreams go away..good dreams good dreams here to stay.
    Love you - xo

  6. He's lucky to have you as his mama. xo

  7. Lawrd...Your car is full, but dangit if I ain't in there too. This was one of the most beautiful things that I have read in so long. I can feel how much you love him, through these words. And I'm tearing up....

  8. First time I have read your blog. I will be back to read it regularly! How wonderful and blessed Ben is to have you and visa versa.

  9. " I go back to the reason for getting that label to begin with: help."

    This made tears come to my eyes. I'm at the very, very beginning of that process: knowing something is not right. My little man turned 2 in October, and I feel so lost with how to deal with him. I get blown off by just about everyone who doesn't live in our house with a "you need to try..." "you just need to..." "he's just..."

    I want the label so badly, because I want things to get better. Thank you for your words (here and on Facebook) because they let me know that things can improve.