Tuesday, June 30, 2015

A new label

It's been an intense year to say the least.  With work and raising three sons and supporting my husband and trying to help my youngest to relearn his language skills, we finally came to the conclusion there might be more going on with Simon.

You see, I had been telling my sons doctor of my concerns for months now....so many honest talks about his different way of showing affection, playing. Every time, my concerns were heard and graciously listened to but then I inevitably heard 'C'mon...what are you afraid of?  Autism?  Simon is NOT Autistic....don't worry about."

It felt good to hear him say that.  I remember buckling Simon into his car seat and telling myself, 'Jess just relax...he'll be fine!'

Then month after month and we noticed regression in his language until every word he had ever spoken was gone.  I had no idea the devastation of looking at him hold a ball after saying 'ball' a million times to no longer being able to say it.  

It was time to talk to a few different doctors....knowledgeable friends...our amazing school district and face some hard truth.  In fact, my fear way back in that doctor office was in fact what was up.


I wasn't so much afraid of that as I'd been suspecting it for a while but wow.  It was agony to sit in a room with a 28-page packet on my lap looking at the tests my son could not pass and read the paragraphs some stranger wrote about how my son interacts.  Differently.  I remember they kept saying 'Do you have any questions about this diagnosis?'  And all I could do was sob and feel my face swell with grief and look to see the same on my husbands.  It was like death.  Not of a child but of the 'typical' expectations you have when you deliver a baby.  Perhaps all would work out to be as close to typical...but in that moment, life changed a lot.

There we were - joining this group of families that exist around the world who do life a little differently....who have challenges many others do not and it hurt.  It hurt to feel different.  I thought immediately to all my worst fears - would he ever play a sport? Would he ever have a girlfriend? Could he ever live on his own? Would he ever tell me he loves me?  It was such a dark day and dark week....to be honest, its still a little dark in here.

I relished times with him more, however, watching him play....babble...give hugs to his brothers or pet our new pup on her head.  In a way, this new label, made me fall in love with him again...made me realize how lucky I got to be to be the one who takes charge of his education and learning while still loving him to bits.

I could tell people in my life were praying for me - many friends reached out to show support and our parents have been so wonderful and understanding of where we are at and what we need.

Things have been lining up for Simon - finally got our insurance to cover additional speech therapy....got him in an excellent school program due to start in August and am feeling the hope of God fill my heart.  This boy - who I love more than anything - is going to do well with the love and support of his family and these incredible medical professionals all around him.

The best advice I've gotten was from a friend who 100% understands where I'm at.  It was simply: 'He's still your same Simon and always will be.'

I hope you will agree to pray for my sweet boy.  He's just turned 3.  We're doing 90-120min of speech therapy per week and we're starting ABA therapy (DIY/Mom version at home) as insurance will not cover it and I don't have an extra $5K/month to pay for it....we are also beginning him on the PECS communication system to help give Simon a voice until those words begin to form and I truly believe they will.

I was fearful to share this out loud - not because of shame - but because people can sometimes unknowingly say hurtful things when you are walking through something like this.  ('He doesn't even look autistic!' etc.) But, the truth is - its not just Simon who needs extra help to get him to his next goal.  So do we.  So do my older boys.  Our quality of life hasn't fluctuated too much since the diagnosis but we also want to protect everyone in the process.  We are trying to not talk 'autism' and therapy too much.  We're trying to get out of the house and laugh....go for walks...catch lightning bugs.

Our little boy is honestly a breeze of a child to raise.  He doesn't throw tantrums or fuss much at all.  He transitions beautifully from one activity to the next.  We're really just praying all the little pathways in his brain come together and we can hear those sweet words come out again.  Thanks for reading this and for praying.

All our love and xoxo,

Joel, Jess, Jude, Leland and Simon


Managed Chaos said...

Sending you all the love and prayers I can for you and your sweet, sweet Simon. xo Jess

greta said...

You guys are always in my prayers! I love reading your feelings and true raw emotion. i appreciate them more then you know.

ps. i miss his hair this length

Operation grow out simons hair

Blog - The New Black said...

A beautiful post Jess! I can only imagine what a difficult time this is for your family. You will all get through it with laughter, smiles and grace. I'll be thinking of you!


Unknown said...

Tears. You are an AWESOME mommy! Finn has some time off school soon. Let's get together with our boys. I'll contact you. Let's do it!

Mary Beth and George said...

He isn't labeled, he is special! After all he was fearfully and wonderfully made. In my years working in the special education department of Hudon City Schools, I have seen many children grow and thrive. I pray for many accomplished milestones!

carol harrill said...

We will be praying for you and your family. God will use all that is happening in your lives for His glory. I also (like Mary Beth) have worked in the Mayfield and South Euclid school systems with these special children and have watched them grow and mature through the years. May God richly bless and use you and your family during the years to come.