Sunday, September 20, 2015

How I Got Started on This Path - Part 2

From here
You can read part 1 of this series by clicking on this link, Path - Part 1.

So, we still had a child screaming and crying all day, he wasn't sleeping, we couldn't bathe him or dry him off without screams of terror happening, and we had a toddler who wasn't talking, was running for hours a day, and was disengaged from life. We were surviving by the grace of God and that's all because it was a mad house.

To make it worse, no one would listen to us. Oh, they saw the issues. You couldn't miss the issues. It was like a 3 ring circus was walking into the doctor's office anytime we showed up, complete with me looking frazzled, sweating to beat the band, and slumped over in defeat. But, no matter what we were told it was fine. They were fine. Some kids slept less (he was sleeping 5 hours a day total as a newborn and that included all of his night time sleep), yadda, yadda, yadda.

Finally I had it. I decided something had to give. It was either going to be me or this situation and I was praying it wasn't me. So, I started to Google.

Let me stop here and tell you something I have learned. People will tell you, "don't be Dr. Google". You know what, ignore them. If they won't help you figure it out, they don't need to be the one to stop you. Yes, research with care, don't throw out logic, and really read what you are finding, but yes, the internet can be a life saver.

One day, as I sat in my chair, two kids sleeping for a few minutes at the same time (which never happened), I came across a list of symptoms that was 100% identical to our older son's issues. I told my husband, "I think he has Autism". My husband, a huge support normally, said in a very passive voice, "no way, I have seen kids with Autism. He's smart." I dropped it. But that feeling never left me. The more I researched the more sure I was. So, I decided to take a different approach with him. One evening I said to him, "oh, listen to this" and read him a list of symptoms I had found. He jumped up, yelled before remembering we had a sleeping baby, and said, "that's IT! That's what he HAS! What is THAT." I turned to him very slowly, and with a steady voice knowing he was going to be hit with a 2x4, I said, "honey, that's the symptom list of Autism". Yes, a 2x4 landed square between the eyes. He was silent as it sunk in. His son had Autism.

That was all I needed to get going. I decided to find out who tested for this type of issue. I first went to our Neurologist and told him something was off with our son. I never said what I suspected. I wanted an unbiased mind looking at him. He did a bunch of testing, a lot of looking, and talked to me for what seemed like forever. He shut his file, looked at me with that look of pity and said, "your son has Autism", and then he waited for it to hit me, tears to flow, and for the barrage of questions. I sighed, took a deep breath thinking, "Finally someone gets it" and asked him one question, "OK, what do we do next". He looked at me, stunned. He asked if I understood what he had just told me. I assured him I had, I wasn't shocked or going to cry because I was just waiting for someone with the right letters after their name to finally see it. He gave me a list of things to do, told me to see a Developmental Pediatrician for diagnosis confirmation, put him in PPCD (special needs preschool at the local public school), and that was all I could really do.

I walked out holding that tiny little hand, shed a few tears for the exact length of the sidewalk, stopped, looked at him, and that was it. I was determined this was not our story and not how this would end. I didn't know what could be done, if anything, but I was going to help him be the best little boy I could, no matter what it took.

We saw the Developmental Pediatrician with both of our sons. She did so, so much testing, a lot more question asking, forms to fill out about everything he ever did or would do, and she confirmed what I knew before anyone else, he had Autism and she had no clue what was wrong with our younger son but there was definitely something.

We walked out hearing the same recommendation, "put him in PPCD, it's all you can do".

I will continue our story with Part 3 soon.


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