Wednesday, February 15, 2012

Somewhere on the Spectrum. Written by Jennifer Ruschman

Somewhere on the Spectrum

Our Path to a Diagnosis

It was not a simple path to his diagnosis.  Realizing there was a problem was tough.  Knowing where to start was hard and dealing with the fact that your child will have autism his entire life was horrible. I haven't heard one story that was cut and dry yet about getting a diagnosis.  Here is our story.

My son was born at 13:13 on January 7th.  (13 happens to be a lucky number for me.)  It seemed like everyone was there to welcome in the first born grandson from both sides.  It was a happy occasion.  We had many visitors for months to come.  He was a squirmy little guy with a big smile.  He didn't like to stay still, ever.  He slept his first few months in a moving swing every night.  If that swing stopped, he cried, so I always had 4 size D batteries ready to pop in.  He was a good eater.  Loved all types of foods introduced to him except for peas.  Don't blame him on that one actually.  He was hitting all of his milestones and his gross motor skills were off the charts.  He was climbing stairs before he could walk.  Everything seemed normal.

We didn't want to wait so we had another baby.  My daughter and son are 17 months apart.  Oh, how our lives changed when there were two.  Lack of sleep because my son still wasn't a good sleeper and now a newborn.  They would both be up every three hours and not at the same time.  There were days that were just a blur.

A friend of mine had a son who was five months younger than B.  She would bring T over to play often.  That's when I started to notice differences between the boys.  T would talk to her, point at things, make eye contact, play appropriately with toys; the list went on and on.  Now, I'm not big on comparing but it couldn't be helped.  Why was B so much different than T?  At night I would tell my husband about all the differences and would end up crying at the dinner table.  After a while he didn't want my friend to come over anymore because of how upset I would get. 

Confirmation bias is a tendency for people to favor information that confirms their preconceptions or hypotheses regardless of whether the information is true. 

When we were alone he was fine.  We were fine.  It didn't matter that he couldn't talk.  Kids throw fits.  We could justify anything.  We were good at explaining what was happening or not happening away.  Confirmation bias. 

Finally we heard the word autism.  Two family members stepped forward at two different times to express their concerns.  Unfortunately, they left it up to me to relay the information to my husband.  It is sorta like when people keep asking the girl, "When are you going to get engaged?"......go to the guy to find out.  It puts her in a bad spot.

At my son's wellness visit at 2+ we asked if he could have autism. While I was holding my son on my lap, the pediatrician said his name.  My son looked up at the doctor and the doctor told us, "No.  He doesn't have autism.  If he did, he wouldn't have looked at me."  OK.  Again, confirmation bias.  A doctor confirmed it, he didn't have it.  Sounded good.  Everyone else is crazy.  Instead he wrote a prescription out for a speech therapist.  This we would do.

After the intake and he started therapy, his speech therapist suggested he had developmental delay.  OK.  No 'autism' word.  We kept with the speech therapy.  In the meantime I had contacted the county to get started on getting him evaluated for speech delay and developmental delay.  Not autism.  The papers were received in the mail, completed and re mailed that same day.  I knew he needed help.  I waited and finally got the appointment call. 

June 2007
So we went and of course he qualified for services.  The report brought me to tears.  I HATE reading those reports.  Still do.  Then I get a call from someone saying she was his teacher.  I was like, what?  Turns out he qualified for 1/2 days, 4x a week and he could ride the bus.  He started when he was just 3.  I had never been away from him with the exception of having my daughter.  It was tough.  Then a few months went by and I received a flier in his backpack advertising an Autism Awareness day at Sesame Place.  Autism?  He doesn't have autism.  Speech and developmental delay yes but not autism.  I called the teacher to see if it was a mistake and she said, oh, I must have put it in his backpack by accident.  See, every professional we had dealt with up to this point had never used the autism word.  Since then we found out why.  If a professional says 'autism' to you and you don't have insurance, then they are responsible to pay for your services.  Didn't know that did you? 

I also started going to a parent support group through the IU and after the second time a mom told me the truth......speech delay & developmental delay = autism.  We now had to find a developmental pediatrician to get an official diagnosis then start with medical assistance.  My head was spinning and I went into depression.  I swear I lost days, weeks and months.  Feeling completely numb and truly alone in my quest to get help.  I tried my best not to show the stress.  Like I was in control but I was falling apart.

Eventually, we went in to see the developmental pediatrician.  We walked out with an official diagnosis of autism.  For the first time I had a smile on my face.  I knew what it was, it had a name and I was going to do everything in my power to help my son.  Nothing was going to stop me and nothing has.  We are a strong family unit out to do whatever it takes to not only help our son but to help others.  We are not alone.  You are not alone.  We are all here for each other.  We need to continue to reach out to others. 

A new friend of mine said it on her page yesterday.  She wrote on Afton's Army  Keep Going! Diagnosis isn't the end of the world...just a detour for a different path. You can do this. ♥ 

I want to hear your story.  If you would like to share your story, please submit it to grapejellyonpizza@gmail.com.

14 comments:

  1. No matter how many stories I hear about a family finding out their child has autism, I still get all teary remembering when we found out too... and yes I DID know about the diagnosis bait and switch- pretty crappy huh?

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  2. Wow, great post. It is such a familiar story. Sounds just like what we went through and how I felt. Thanks for sharing.

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  3. You leARN SOMETHING new every day! Thank you for sharing. It sounds a bit like our story.

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  4. This you are describing is us right now. He has speech already and in 2weeks when he turns 3 he starts school. Developmental delay has been thrown around a lot. This is my story too! There's just no diagnoses. Down to his first pedestrian telling me not to worry. She never even gave him speech rx she just kept repeating 'he's not autistic'. But I knew. Something was wrong. I will submit my story to you. By email, but I believe it would be quicker to copy and paste yours.

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  5. Even reading someone else's experience with diagnosis makes my heart pound with remembered shock. We were also very good at explaining away the signs, even when we knew deep down that something wasn't quite 'right'.
    Thank you for sharing..

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  6. we've been there as well. we received our second official diagnosis, this time from an actual developmental pediatrician this past Friday. we've been told "extreme adhd and immature" by a psychiatrist and there's no way she could have autism because she is so smart and met most all her goal on time. I was excited and sad all over again, but I am so glad to have the diagnosis. maybe it will help with the doubting family...hang tough, you are not alone :)

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  7. Our story was a little different than yours. I'm sorry you went through all of that. My son's pediatrician kept denying it when I asked, so when I moved to a different state I had their Early Intervention come out and test him. I knew what it was, but I needed someone to say it. They gave the results to the new ped and she referred us to a neurologist that day. He had his diagnosis within the month. It really didn't change anything for us, except how some people talk about him. He's my only son and I love him. The fact he is just as different as the other 4 makes me proud. I love your blog, btw. :D

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  8. you are so awsome this made me cry because I swear this is my story. It is our story to a T. Thank you so much for sharing you rock girl!

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  9. Certainly one of the most amazing entries I've ever read on this topic. And having a 15 year old moderate/severe son on the spectrum, I promise you that I've read many.

    Dylan was in Head Start when we discovered his autism at about 2 1/2 years of age. We'd been doing all of the standard stuff, hearing tests, medical check ups, to explain his loss of language. Normally developing to completely silent without eye contact in about 10 days.

    My wife Barbara had been researching his symptoms on the net and one day sat me down to walk me through it. "I think that he may be austistic..." she said.

    The next time we went down to the Head Start center she mentioned this to one of the "counselors" who immediately stood up, I swear that this is true, threw up her arms and started screaming up and down the halls, into different rooms, "They said that A word! I didn't mention anything about it!! They said the A word first!!"

    That was the beginning...Thank the powers that be for the strength of women...I couldn't breathe for about 4 days. Couldn't think, couldn't do anything but just stare of this tiny little human and wonder what it all meant...

    While I was busy wallowing in my shock, my beautiful wife was busy making plans for the initial steps we should take to best begin the start of the rest of our lives, and we've followed it more or less ever since.

    Thanks for your thoughts...They're awesome.

    Dwayne

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    1. Thanks Dwayne. They said the A word first. Isn't that unbelievable? Thank you for sharing your story also.

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  10. Thanks for the shout out!!! I treasure our friendship :) Also wanted to tell you I just updated the blog and I have yours linked up to mine under "My favorite blogs" xo

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