Autism Awareness: I wish I had a doula for our autism journey

autism_boy_morgantown_mountainstate_doula.jpg

April is Autism Awareness month. Throughout the next few weeks, we'll be featuring stories from guest bloggers about life experiences living with autism, or caring with children with autism. Read on for Cindy's story.


 

From his very first word, I knew my son wasn’t like most children. His speech, communication, and walking was on track. In fact, everything up until age 4 was on track, but he was always different. Most people hear autism and think of the child that can't speak for themselves, or are at first site noticeably unique.  That’s not the case here, not one bit.

I wish I had a doula when I knew something was different because no one else supported me. My doula would be kind, but firm to let me know she’s there for me but would help me find my inner strength to stand for what I know needs done. She would know just what to say to help me push through a hard day, and how to encourage my inner strength when I just can't find it.

I didn’t have my own strength to take the next step until right before Pre-k. We live in a big state, and my son got wait listed for pre-k. I knew right away that if he didn’t get into a school setting, then he wouldn’t know how to handle school, and would eventually get behind. There were many “red flags” that led me to believe he needed some assistance. He has his funny little quirks, like a hand flaring when he is really excited, or an obsession with stacking blocks in the same repetitive pattern. Then there was the way he acted around others. He would get “shy” and not talk even around people he sees daily. The hardest to live with was he never understood punishment. We both think on different levels and the autism put up a block that kept him from understanding the meaning of my words or actions.  I took him into the Pediatrics Neurodevelopment Center right away to be evaluated, and at the end of his evaluation I heard the words that had changed our lives forever.

“Your son is on the Autism spectrum, he’s a 2 border line non-functional.”

Autism Spectrum Disorder level 2 means there are marked deficits in verbal and nonverbal social communication skills. His social impairments are apparent, even with supports in place, and level 2 requires substantial support. Not everyone diagnosed with autism shows the exact same symptoms. In my son's case, he has a hard time communicating his needs, wants or feelings. There’s difficulty with him when it comes to focusing or understanding there are consciences to his actions.

I needed a doula to let me cry, to help me understand that it wasn’t my fault, and help me gather myself for my children. I was able to hold it together for a little while, but later I unraveled. I blamed myself and questioned everything from what I fed him, to how healthy I ate while pregnant with him. My doula would just be there to listen, validate my feelings, help me with dinner and let me vent. Then when I needed it she would pull out her amazing knowledge and help me get down to it.

Once we had the diagnosis and the initial shock was over, everything all fell into place. The school accepted him and put him with a teacher that had experience in teaching special kids. Everyone, from the bus driver to the hall monitor, has shaped and helped my son. He went in, too scared of crowds, not talking or expressing his emotions and is finishing this year in an amazing turn around. We are now more confidant than ever and have no worries about kindergarten.

A doula would have the biggest impact in helping our everyday life. It can be as normal as yours, or I could misunderstand a dream he had and the whole day is off balance.

Having a hard time expressing his emotions makes it difficult for us to get through the day without a meltdown. Our morning is usually the worst, and next to that would have the be the first hour after school. He gets very overwhelmed with the change from his class setting with strict rules to home, with 2 siblings that want to hang on to his legs the moment he walks through the door. I could use an extra set of those amazing hands to help balance all the kids while he gets adjusted, or to get dinner in the oven on nights when I have 2 hours to get everyone fed and out the door. (If I order one more pizza this week I may be on a first name base with the delivery driver!)

Every small victory is celebrated.

We make sure to let him know just how much he has succeeded, and how much we cherish every little thing. He has come a long way, but I do know he still has a long way to go as well. I can see me calling up a doula when things get me down, and I need that lift. Or even when my life piles up and I need some meal planning done. Then I could have a caring doula by my side and an amazing home cooked meal so that I could have all the family time I need when it matters most.

And wouldn't that be amazing?