Grieving the Child I Thought I Lost

The day after Mason’s confirmed diagnosis I couldn’t shake my unexplainable feeling of loss. But I didn’t lose my child. In fact, he was sitting 3 feet away, happily lining up his cars on the tv stand, babbling in a language only he could understand. Even though he was close enough to touch, I felt a gaping hole; like part of my life, the before Autism part, had died. When we got home from the assessment appointment, I dug out Mason’s baby book. The record I had so proudly and…

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What Regression Means in Our World

I want to talk about regressions in our autism world. That word. Regression. A loss of skills. A set back. Starting over. If I didn’t live it I wouldn’t believe it. I know there is a clinical definition. Those never seem to sum it up for us though. A regression is like having the rug pulled out from under you. It’s two steps forward and three steps back. It’s working every single day on using a straw. Mastering it. And then one day, waking up, and not knowing how to…

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Riding the Roller Coaster

Look at this smile. He’s back. We made it through another regression. Another loss of skills and spike in behaviors. This one lasted nearly two months. Which in our autism world is actually short. I don’t know what caused it. Maybe getting a new sibling. Maybe the ear infection he had. Or a full moon, new therapist, or change of season. I’ll most likely never know. That’s our autism world. A mystery. It’s constant ups and downs. Gaining skills. Losing skills. I call it a roller coaster. But we made…

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The First Day of Autism

The first day I realized my baby boy was autistic is one of those days that will forever be etched in my memory. Like the day my husband and I found out in the ultrasound room that our baby was a boy, or the night we walked together on our favorite trail while I was in labor with him. My husband sang to my stomach to let Johnny know he was loved, and that we were waiting for him on the other side of the dark. I remember it like…

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Success with Headphones

I am a goal setter. I am a list maker. This is who I am as a person. Sometimes it drives my husband crazy. But, I think he will also admit how helpful it is. At any given time you can walk through my kitchen and see a list. Call social worker, complete paperwork, pay medical bill, make doctors appointment, etc. I also make lists with goals. Sometimes they are for Cooper and related to autism. Sometimes they are goals for our family. I even add the steps to achieve…

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Sometimes I Wish It Wasn’t So Hard

My autism “ah-ha” moment came when my youngest son was six years old. He was diagnosed at age four with moderate to severe autism and a global delay. I was recently a single mom of the three boys, with two of them on the autism spectrum. My one son however was high functioning and steadily progressing. That was not the case with my middle son though and it was a very hard pill to swallow. We had many medical professional tells us that we needed to focus on quality of…

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Finally, An Improvement. Thank You Sweet Jesus.

If you talk to parent’s of autistic kids they will often say that their kid goes through periods with no improvement. And often you can mix in a little regression. For example, when Cooper was two years old he forgot how to drink out of a straw. Or sleep is a big one. Cooper didn’t sleep through the night until he was 2. And then slept through the night from age 2 to 3 and then suddenly stopped again. There is no rhyme or reason. Look at your child right…

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