Tag Archives: #Autism

My Autism Story, Part Three.

Practically Perfect in every way.

The next 6 months were filled with intense early intervention.  This included speech therapy (individual and group), music therapy, behavioral health, occupational therapy, sensory integration, oral motor therapy, gluten-free diet, joint compression, brushing skin, the 3 days a week at school, and case management. 40+ hours a week inside and outside our home. I jumped in head first willing to do whatever it took to help my daughter beat the odds. 

October 18th, 2004  The day our lives changed, and yet nothing was different.

The 6th-month wait for the pediatric neurologist was over.  Trinity was diagnosed as severely autistic.  The appointment itself was a blur.  What I do remember is after it was over I sat on the curb of the parking lot of the clinic and cried my eyes out.  I focused on the curb as my mind raced.

 Why is this happening?  What did I do wrong?  What kind of life will she have?  Will she ever have her first dance? Kiss?  Are children and marriage for her completely out of the picture?  Will society ever be able to see the light inside her that shines the way I do?  Will she live with me forever?  Will she be happy?  Who will care for her when I am gone?  How can the sun be shining so bright and the day be so perfect?

I called my mom and she and I cried together.  She reminded me how much more will be available to her now with the diagnosis and that nothing has changed.  She is the same as she always has been.  Everyone’s initial reaction was sad, but then we all rolled up our sleeves and faced this new journey head-on.

I will be sharing Autism testimony every Thursday.
I have 21 years of experience.

My Autism Story, Part Two.

I made her this pillow and today, at 2o years old, she still sleeps with the fabric of it.

I called the pediatrician, who we had just seen at Trinity’s 2-year wellness check, and asked what I should do.  He had me schedule an immediate appointment to come in and discuss my concerns.   As we were talking I just felt pissed and mad at the world.  I had been to the doctor’s office with Trinity 7 or 8 times already and I was led to believe that everything was fine.  So when I called I said something like “Hi I was just there a couple weeks ago and everything was fine, but my family thinks something is wrong with my daughter.  Should she be talking yet?!” It made me angry and made me feel like I was already failing her.

The doctor referred us to a pediatric neurologist for an MRI and an EEG.  While we were there they asked if it appeared that she was having seizures and I wasn’t sure.  She was in her own world a lot of times and was “zoned out”.  The EEG was awful.  We brought her in sleep deprived and then they mildly sedated her, only there is no way to get anything in Trin’s mouth without a syringe AND that doesn’t mean it will stay in there.  They tried diluting the anesthesia with chocolate syrup and she still hated it.  It was over an hour of her thrashing and us trying until she finally fell asleep.  They put sensors all over her head and I remember just looking at her and thinking “it was just a week ago I thought she was a flawless little girl and now she looks like some terribly sad story you read in a magazine.”

The pediatric neurologist had a 9-month waiting list.  At the time, you could do almost nothing without a diagnosis from one.  Until we were able to get in I was guided to an early intervention program within our community.  They had a special-ed preschool for 2-4-year-olds.

 I went to the intake meeting with teachers and staff and was so lost.  It truly felt like it was me versus 5 people and I was there just to be told what was going to happen and what I was supposed to do.  The teacher said during this time “I find children your daughter’s age want to impress adults and we should have her on our schedule in no time.  We will listen to each other and grow.”  This is the first time I opened my mouth about my daughter in an IEP setting meeting and I said “that sounds lovely, but she doesn’t talk at all, so she may not understand what impresses you.”  The teacher looked me straight in the face and said “maybe I need to shut my big fat mouth until I hear what your daughter is all about first.”  I respected her so much for that.  

I will be sharing Autism testimony every Thursday.
I have 21 years of experience.