Autism, Parenting

Life Before A Diagnosis

My son is two.  He is vibrant, happy, and busy.  Very, Very, excruciatingly busy.  He doesn’t like to fall asleep.  He might miss something exciting.  The more exhausted he gets the faster he moves until he can literally fall asleep standing up.  He is very easily frustrated, but I think a lot of that comes from the language delay.  When he gets angry he can’t get any words to come out at all.  He just screams, cries,throws himself on the ground, or charges into walls or doors.  When he is happy he can light up a room and warm your heart.  Unfortunately his mood can turn on a dime with transitions that are simple for other kids to make.  Taking his shoes and socks off is stressful.  Telling him we have to go somewhere is stressful.  Being in public is stressful.  For the love of God do not touch his hippos without an invitation to do so.

 

Our families version of normal has been anything but normal for the last six months.  This whole process started about six months ago.  Seamus marched into his two year check up appointment with our family doctor.  The usual process of checking height, weight, and the plopped us in an exam room while we waited to be seen.  The nurse set a piece of paper on the counter and asked me to fill it in.  Nothing scary.  Just the usual “Is your child hitting these mile stones” kind of form.  We had done many before today so nothing about this was odd.  His doctor stepped in the room and scanned over the paper. “Is he still not saying anything?”  “No, not yet.  He makes a lot of different sounds, but no real words yet.”

That is when we were first referred to Early Intervention.

A few weeks later he had an evaluation and was found to have delays in communication and social interactions.  So, we started therapy with Christine. Christine is absolutely amazing at what she does.  Seamus is a VERY busy boy and she was able to work with him and get him to start talking.  She did find it troubling that she couldn’t get him to sit down and engage with her.  He had to be moving, jumping, spinning, or hiding in the couch cushions.  She suggested we contact our family doctor and request a referral for Occupational Therapy down at Rehab Works.  The can help little people with Sensory Integration.  The wait to get into these services is lengthy.  Seamus got a call pretty quickly for an evaluation, but we waited almost two months to be offered regularly scheduled appointments with them.  The ladies down at SI quickly recognized Seamus as a sensory seeker.  He just CANNOT get enough movement.  There is no fear in this child.  We’ll come back to this, but he sees them twice a week for therapy down at the hospital.  After a couple months of combining Speech Therapy and Sensory Integration we started to see some small improvements.  Seamus was adding new words to his vocabulary regularly, but something still seemed off about the way he interacts with others.  This is when we got the dreaded suggestion to make the trip to Erie and meet Dr. Joseph Barber and have an Autism Evaluation done.  I about fell over when scheduling the appointment in early March and the absolute soonest they could see us was the end of June.  Almost three months of wondering “what is going on?”, “Why is he so different?” but we waited.

The day came for his Autism Evaluation and I found myself in denial that anything could possibly be anything but ok with my kid.  I mean he’s two!  He should be a bit on the crazy side!  They all are! We talked some on the trip to Erie but I was lost in my own head.  We arrived and I filled out the mountain of paperwork and health history for Seamus starting with my pregnancy. The diagnosis came pretty quickly after a conversation with the doctor and some interaction (or lack of interaction) between Seamus and Dr. Barber.

He has Autism.

He is different.

 

We will be okay.

It’s not a death sentence so there is no reason to feel sorry for us or him.  The world is just a little bit different through his eyes.

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9 thoughts on “Life Before A Diagnosis”

    1. I love all these ,read them last night ,very good to know and learn …Have you seen the series
      Parent hood? My favorite show ..One of my favorite main characters has it I love him

      Like

  1. I’ve heard Autism and ADHD explained as….”You planned on your child going to DisneyWorld …..but he’s not in Disney World….he’s in Pittsburgh…but Pittsburgh is still an ok place to be…it’s just different. Love on your little man!! He will be remarkable!!

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  2. Thank you for sharing Love! I’m so excited to read about the journey through your beautiful eyes. Seamus is such and incredible boy and he has an outstanding mother to share his life with. God gave you this extraordinary gift, knowing you could and would learn and love this path with grace. I cannot wait to read all your entries.
    Love, your friend Elle :-*

    Like

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