It’s just a day. One sweet little day. Some go by too fast. Some days are slow and sweet. Some are pain in the butt terrible…and some days make you fall to your knees and cry…
And we will gather them all in our arms and hold them tight because they are a package deal..
It first hit me right after he turned a year old. 1 in 88 children are diagnosed with an Autism Spectrum Disorder… 1 in 5 siblings of a child on the Spectrum end up Autistic… Not great odds... At the time it was an understandable fear- punctuating everything I did– but only for a few days…Worry makes me a terrible Mom so I put it in a box marked laterand planned to deal with it then.
Parker Doodle, 12 months old
Perfect Parker, 15 months old
It hit me again- a little louder and a little harder at 15 months… No words… No pointing. Why doesn’t he wave anymore? Silently begging others to tell me this wasn’t so… Lapping it up when they did.
I finally realized at 18 months… And the world turned gray. It’s when I was in the black hole. I no longer needed constant reassurance because I knew. I knew something…and I knew Parker needed help immediately.
The first time around with my 3 year old son, Greyson- I thought it would kill me.. This second time- I kind of wish that it would. Please.
I believed everything I said to you. Life is what you make it and so on.. But that was before… When I had one typical child. One child who would be my saving grace. One child who would grow up and get married and have babies. One child who was easy. But now I think that’s gone.
Today we went to the Central Valley Regional Center to address concerns we have with our almost 20 month old son, Parker and his development. If you have any concerns about your child, please ask your pediatrician for a referral to your state’s Early Intervention Program.
We brought Plex- he’s a yellow magic robot… We decided we could use some magic.
The screening process for a baby like Parker is a play based assessment done by a Nurse, a Speech Language Pathologist, a Psychologist and 2 employees of the Center. For the most part it’s not too stressful for the little guys… Parker might go so far as to say it was fun…if he could talk.
Taking pictures as a reporter was much easier than being a Mom.
In addition to doing activities on a mat, he was evaluated using the Modified Checklist for Autism in Toddlers… The MCHAT. It’s a screening tool for Toddlers between the ages of 16 and 30 months that is looking for Autism red flags. It’s a series of questions asked to the child’s parents.
Parker failed the MCHAT. And although I knew he would (I’ve practically got that thing memorized) it still hurts so bad that I can’t even cry…but when I start I may never stop. A failed MCHAT doesn’t guarantee a diagnosis of Autism… But it’s not too promising either. The good news is- he is now eligible for Early Intervention services… But I don’t really care about the good news right now.
Autism can look like many things friends… It can still smile and laugh… It can love hugs and kisses…it can even make eye contact…it doesn’t always line things up or spin in circles… I didn’t know that before. I tell you- not to scare you…but to create Awareness.
At first I wondered, Why does God hate me? I can’t bear to think he gave me this because he thinks I can handle it. If that’s the case- I’ll fess up now.
Hey God, I CAN’T HANDLE THIS. Thank you for thinking of me though. Let me know if any other- fun opportunities open up.
Am I the only one who thinks that makes God sound mean? Doling out stories that make people feel devastated? I will give God another chance if he promises to help me through this- but I refuse to believe he sought me out for such sadness on purpose– just because I could. I can’t think that and still like him. (It’s OK to doubt him. He told me. He is perfect and he already knows I’m not. He loves me just the same either way.)
God- please give me the energy I need to do the Life you gave Parker justice… He’s pretty amazing and he deserves the best.
By the time Spring rolls around I will be OK.
I keep repeating to myself…There is unfathomable greatness in my future. I hope I believe it really soon.
I feel like I’m being born…I’m not ready to leave this dark warm space and it hurts and I am scared and I don’t know what’s waiting for me on the other side.
Friend- tell me the meaning of life. What is it all about? Doing justice to the gift of Life? Embracing our gifts even when disguised as problems?
What is the purpose of your life? A question many of us can answer in a quick and anecdotal way- God, my spouse, my family, my passions… But I wanna get down and dirty- yes- dig deeper… Why do you exist? Why do I exist? Right now it’s all so confusing and so clear all at once.
What am I supposed to learn from this journey? Am I supposed to learn how to adapt despite circumstance? How to find the greatest of beauty in a new pair of socks or a brand new bag of Swedish fish candy? How to cultivate gratitude in the midst of sadness? How to let go of comparison and envy…anger and entitlement?
Today I told myself- no matter how bad of a day you are having- there is someone out there having a worse one… and then I told myself, If you don’t believe that- go to a chemotherapy infusion center and see… and if you don’t believe that –go to a morgue and see. Someone is always having a worse day.
I went for a run in the rain tonight… I needed to replace the numb with anything…cold- even pain…And afterwards there was still nothing…No- I feel better now…
No relief, no release at all. Because the truth is- no run, no pill, no booze, no number on a scale no new pair of shoes can touch this ache.
And time takes time…
And so I wait.
I have a favor today… It’s a big one… share a link to this blog on your Facebook page today…Ask your friends to share it with their friends…It’s a huge deal to me…even more so now…help me reach more people. Helping people always takes hurt away.
Article Courtesy: Chrissy Kelly