Sunday, May 16, 2010


It's funny looking back to when Jacey was just a baby and remembering things that were "different" than the older two kids.  About two weeks after Jacey was born, she quit taking a binkie (not that she loved it before then).  I can't remember at what point this actually started occurring, but when she got upset, she was upset!!!  Not even nursing would soothe her.  All you could do was lay her down in her crib and close the door behind you.  It was hard to bond with her and I felt like a terrible mother because of this. 

It seemed that as she got older she got a little happier.  She got a little happier when she was able to sit up, then a little happier when she could crawl, and a little happier when she was able to walk.  We both recall really beginning to like her when she was about eighteen months old. 

It was always funny going to the grocery store.  I'm sure you all know what it is like to go up to a cute baby and talk to them in hopes of getting a smile from them.  On many occasions, I would be out grocery shopping with her and my other children.  People would come up and try to get her to smile.  I felt so bad for them because I knew that the chances of them getting a smile in return was extremely slim!!!  I always told the people that if they did get a smile, they would know that they had earned it.  It was hard for even Judd or I to get her to smile.  I'm not saying that she never smiled, but you definitely had to work for it.  Grocery shopping was a different experience having a baby that would just stare at strangers smiling at them.

The spring before she turned two, the local school had a Preschool Screening.  We went and had all of my children evaluated.  They also include hearing, and vision for the older children.  It is fun to watch your child interact with the therapists and see what skills they would display for them.  Everything from stacking blocks, feeding a baby doll, hopping on one foot, identifying pictures, and many other things.  When I took Jacey to it just before she turned two, they found delays.  They were interested in contacting me later to talk more about what we might want to do.  At that time, I just figured that Jacey had been "blessed" with the stubborn jean (and I'm not telling from which side!).  She never would perform for anyone, not even Judd or I.  So, I just figured that the reason they showed delays was because she was so stubborn. 

By the time summer came around, things were beginning to decline.  Jacey started loosing the few words she did say.  Everything was a fight - from brushing her teeth, getting dressed, to changing her dirty diapers.  We finally went to our Pediatrician in hopes of learning what to do.  I love our Pediatrician, but that day was overwhelming.  He thought that she might have ODD - Oppositional Defiant Disorder.  He told us that we had to throw all of our parenting out the window and start from scratch with her.  He also said that we had to create an environment where she couldn't get in trouble.  I wanted to go home and cry!  How could I change EVERYTHING about how I parented my children?  How could I create a safe and discipline free environment without removing most every piece of furniture. 

He also had us set up an appointment with the behaviorist to see what she thought.  Our appointment was at the end of summer.  We saw her, but were extremely disappointed with the "bed side" manner.  We had to fill out a gazillion questionnaires before our visit.  Her nurse came for us and did most of the hands on testing with Jacey.  When the actual Behaviorist walked in, she sat down and talked with us about the questionnaires we had filled out.  The only interaction she had with Jacey was checking for reflexes and muscle tone.  Woo Wee (insert sarcasm)!!!  I was not impressed!  Needless to say, the questionnaires we had filled out leaned towards some behaviors in the Autism Spectrum.  She never told us that Jacey had Autism but that she wanted to re-evaluate her in six months.  In the meantime, she had us start Speech and Physical Therapy. 

When almost six months had passed and Jacey was not progressing, we finally looked at the option of having her evaluated by the North Central Evaluation and Consultation Team.  It is a group of specialists that come together and play with Jacey.  They used the DSM-IV which is considered the "gold standard" for diagnosing Autism.  After evaluating, observing, interacting, and playing with Jacey for about two hours we left for lunch.  They would go over what they had collected and come up with a report for us regarding their findings. 

We came back and sat down with the team while Jacey went to play in a different room with a Family Support Specialist.  All I can think of was the moment that they told us they felt that it was Autism and that she was right in the middle of the spectrum.  My mind was in and out from that point forward.  How could they decide that after such a short amount of time with her?  What did we do now?  Where could we go for help?  How was I to raise a child with Autism?  My mind and body started to shut down.  It was a horrible feeling.  I was so devastated, I was crushed.  I had gone to the evaluation and consultation thinking that they would tell me that she had something else, something that she would outgrow, that it wasn't Autism.

That day, Judd and I drove down to Billings for some meetings he had to attend to.  My mother-in-law, Karen, stayed home with our older three children and we took  the baby.  It was a good time for me down there.  I had some quiet time where I could think and reflect on the things that I was told.  They had given me a kit for the "First Hundred Days After Diagnosis" for Autism.  It was on that trip that I decided that they were the experts and that I needed to accept Jacey's diagnosis.  I had to be her advocate because no one else would be.  I started researching like crazy and talking to people that had more experience than I did.  That is when I learned about Autism Service Dogs.

I hope that if someone is reading this that has a child that is "stubborn" and has delays, don't procrastinate having them evaluated.  Don't just assume that they are stubborn.  Learn for sure if there is anything causing the delays.  I can't change how we did things, but the one thing I wish we had done differently was to have her evaluated sooner.  Early intervention is critical! 

I'm still working on so many things to try and get Jacey the help that she needs.  I am learning and growing in all of my research, but I definitely feel it is beneficial to have Jacey get help from people that have more experience with Autism.  If I don't advocate and fight for her, no one else will!  I feel that I have dealt with the grief process by fighting for her.  I don't have time to cry and wallow away in self pity when there is a beautiful little girl needing my help.  Writing these feelings have brought tears to my eyes thinking of how my baby will always have hard times.  I just pray that I might do everything in my power to make life a little easier for her.


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