Yesterday was a tough day.
I have officially tested (and have proven) the theory that parents of children with autism suffer from PTSD. As most of you may already know, my oldest boy has autism. He’s 13 years old, he’s wonderful, and he lights up the room.
Twelve years ago, I sat in an observation room at a clinic (behind the one-way glass) while my oldest boy completed a battery of tests given to him by Speech Language Pathologists, Pediatric Neurologists, Pediatricians, Developmental Pediatricians, Audiologists and Occupational Therapists.
And twelve years later, I’m having to do it all over again with my youngest child.
Yesterday, I sat in an observation room (behind the one-way glass again) and watched my littlest guy complete the testing required to pinpoint his problems, and find his strengths as far as his expressive and receptive language is concerned.
As I sat in the darkened observation room, I felt the slow building of a panic attack. My heart began to race, I started sweating and shivering and that familiar pressure in my chest made me feel like I would explode at any moment. I felt light headed and couldn’t regulate my breathing…..so I cupped my hands together, closed my tear-filled eyes and did my best to avoid a full-blown episode.
I was alone in the booth. No one could see or hear me as I watched my child fail test after test, while he kept getting frustrated at the doctors….and began spitting at them.
Tears rolled down my cheeks and I was alone.
I did my best to keep my mind from drifting into panic mode, even as my body was betraying me. My mind betrayed me, anyway….no matter how hard I tried:
“It’s not autism. It’s not autism.”
“What is developmental delay?”
“What do I do to help him?”
“If his hearing is almost perfect, then why does he not answer my questions?”
“Why doesn’t he understand me?”
“If it isn’t autism, then why does he have autism-like behaviors?”
“How could this happen?”
“I’m old, and I’m tired. I’ve fought for services for my oldest child. How am I going to have the strength to do this all over again at my age?”
“How can we afford all these therapies?”
“How do I fix this?”
“Why did I wait so long to get these tests done?”
“Why didn’t I listen to my gut when he was 2?”
“You are a horrible mother.”
“You waited too long, and now he’s going to suffer for the rest of his life.”
“Your boys have two different fathers, so it’s obviously YOUR fault.”
“You did something wrong. You are cursed.”
“You are worthless and pathetic.”
“You should have …..”
“Why didn’t you…..”
Even as the avalanche of hateful words from my own mind poured over me, I managed to pull myself together long enough to keep from passing out. I looked through the glass at my little curly-haired boy with the chubby cheeks and big brown eyes. I smiled through the tears. It isn’t about me. It’s about him.
I can do this again. I will do it again. There is no other way.
I knew that we were dealing with developmental delay last year when I got him evaluated by our local school district. My little guy attends a program for special needs children, and he receives speech therapy once a week. I was handling his diagnosis pretty well, prior to being stuck in an observation booth….
….so my conclusion is that I have PTSD.
Instead of facing the situation head-on and dealing with ALL of the emotions that go with having your child diagnosed with having a disability, I decided to bury all of those emotions.
It was the observation room that stabbed me in the heart…..and all of those emotions started to bleed out. It was a cruel reminder of the past. A reminder of what all I had already been through, and it was the starting line of a new marathon. A race I had run once before, and was still running with my oldest boy.
Last night, I had my meltdown. I had a good cry….facilitated with an abundance of wine. Two bottles, to be exact.
Don’t judge…it’s my process.
I fall apart….and then I get up the next day and get my ass to work.
Today, I am picking up the pieces and getting to work on a plan. All I know is autism, so I’m going to treat developmental delay like autism. I’ll just tweak the treatment plan a little bit.
We are looking at diet changes, vitamin supplements, occupational therapy, speech therapy, physical therapy, neurological tests to rule out an underlying problem, visits to a feeding clinic, doctors appointments, changes to IEP, at-home therapies and weighted vests. We are looking at play therapy, summer clinics, Proprioception excercises, sensory activities, language-building DVDs, music therapy and anything else I can find that may help my little man.
Last night, as I spoke with my husband about all the things we will need to do…we decided it was best to cancel the cruise we had been planning for our 10 year anniversary next year. Our little man needs help, and our insurance deductible is very high. Every penny we have will need to be poured into therapies for him. I am going to our travel agent tomorrow to get our deposit back, and use the money to schedule some speech therapy sessions for this summer.
So….that’s what happened yesterday.
The observation room happened. And I am fully awake now. No more denial.
I am picking up the pieces, and getting to work.
It’s what I have to do.