It’s been rough lately with lots of screaming and too many punches to the head to count. We try to keep a daily tally but some days (most days honestly) it’s impossible to keep track.
Last week I ordered a ‘Cozy Caterpillar’ for Josiah. According to the website, it provides a proprioceptive and deep pressure touch experience like no other and is very effective for improved focus and calming for adults and children with: • Stress • Anxiety • Attention Deficit Hyperactivity Disorder • Autistic Spectrum Disorders • Sensory Processing Dysfunction.
One of Josiah’s amazing caregivers took the cozy caterpillar to ABA so Josiah’s therapist could advise on the best way to use it. She suggested he wear it 10 minutes every hour.
When I first put it on him he loved it and did not want to take it off. He sat at the kitchen table enclosed in the compression tube, quite happy. And here’s the best part. He wasn’t punching himself.
With his hands safely tucked at his sides, he joyfully watched Mama Odie singing, ‘Dig a Little Deeper’ over and over on his ipad.
I took him for a ride in the van Saturday in an attempt to calm his aggression. I strapped him in with his padded blue helmet and royal blue tube.
At every red light, it was painfully obvious Josiah’s bouncing and screaming was drawing attention from the cars stopped next to us. Instinctively I inched forward as much as I could to avoid any unnecessary scrutiny.
Yesterday while encased in lycra fabric, Josiah enjoyed watching some music videos for a short while.
It breaks my heart that Josiah’s daily existence involves wearing a helmet 24/7, even while he’s sleeping in his padded bed and now includes a compression tube. We are doing our best to keep Josiah injury free but at what cost?
I was feeling defeated this weekend, knowing our poor boy is declining and wondering why the quality of his life has to be so difficult. I’ve never had an, ‘it’s not fair’ type of outlook but how much can one person endure? Where do we go after the tube and helmet no longer temporarily ‘fix’ horrific episodes? Will Josiah ever be pain free?
This morning one of my favorite songs popped up on Pandora and brought perspective back.
“One Thing I Know”
Something in your eyes I see
reminds me of what used to be,
when I was still uncertain of the truth.
Sleepless nights I’ve turned to days,
alone inside an endless space,
Counted on someone to see me thru.
And if there’s one thing I know
you were never left alone,
’cause you can always call on Jesus’ name.
And if there’s one thing I pray
is Jesus helps you find a way
to make a change and listen to your heart.
God will take away your pain,
if you’ll choose to let it go,
if there’s one thing I know.
How can I convince your heart,
His light can find you in the dark,
and only He can make your blind eyes see?
For if we speak of lost things found,
or lives that have been turned around,
then tell me who knows better, child, than me?
And if there’s one thing I know
you were never left alone,
’cause you can always call on Jesus’ name.
And if there’s one thing I pray
is Jesus helps you find a way
to make a change and listen to your heart.
God will take away your pain,
if you’ll choose to let it go,
if there’s one thing I know.
I would never stake my life on any lesser thing
than the Cross of Christ, where He gave His life,
to ease my suffering.
And if there’s one thing I know
you were never left alone,
’cause you can always call on Jesus’ name.
And if there’s one thing I pray
is Jesus helps you find a way
to make a change and listen to your heart.
God will take away your pain,
if you’ll choose to let it go,
if there’s one thing I know.
This song comforts me. None of what Josiah is going through is without purpose. Maybe we need to go down this path to pave the way for others who will follow behind? I really don’t know but I’m hanging on to these words…we can always count on Jesus’ name. I’m very certain, HE will help us find a way.
Wonder if that path leads to Bora Bora?
I love you, Sandy. And I often call His name on Josiah’s behalf. Xoxo
Oh Kim, I love you too and am so grateful for all the prayers!! I KNOW there is a plan and a purpose here. Not giving up HOPE, just wishing for Josiah’s sake it wasn’t such a challenging road for him all the time!!
It truly breaks my heart to see josiah in so much pain. I as a special needs parent myself i understand how gut wrenching it is to see you child suffering. I understand the sleepless nights. I understand the desprate need for communcation to give some insight to what may be wrong. I understand the feeling of helplessness, the frustation of dead ends , the hours i know you spend researching on how to help your child, the countless doctor appointments , but yet you still have know answers. I understand the feeling of thinking for just a moment that you have figured it out only to have heart torn into pieces the next. I know that that everyday you try to brave and strong for you family and friends but mosly for josiah but inside you are scared to death. They are wounds that can not be seen from the outside, they are wounds only a mother can bare. I understand the loneless that you feel becasue nobody truly gets it, although they try to be empythtic you are numb from the pain that the comfronting words are no longer helpful. You will find answers some how some way josiah will get what he needs. He is lucky to have a mom thats refuses to give up on her little boy.
Robin your words brought tears to my eyes. I KNOW you understand more than most!! Everything you said is SPOT ON!! This path is not an easy one for any of us and I do question at times WHY it has to be so hard for our kiddos. As difficult as it is for us as moms, it’s so much more challenging for our kids. They are the real troopers who face each day with brave, unrelenting spirits. How could we ever give up on them?
All I can do from such distance is heave a giant sigh and offer you nothing that will help other than my heartfelt compassion
Thank you Janet…your heartfelt compassion is greatly appreciated!