The Feared Word: Regression

Tonight I was out laughing the evening away with some neighbors while my husband was home with four of our kids. It has not been the easiest day.

There were vet visits and therapy moments and trying to understand what our sweet Serrie wanted but the wave came to a crest when my second born was put on the #2 team for travel basketball. This girl who faces so much with strength and stamina sat in my car knowing she was placed correctly but wishing she was placed differently had tears streaming down her. I think the night wouldn't have been so very bad had the mean girl incident in gym never happened. I was ready to go home, settle her into bed after a pep talk about choosing to let losing defeat us or make us stronger but then I wondered could I really be done?

A glass of wine seemed to be the perfect way to end the evening after having just finished comforting said 10 year old I asked my husband, "how was Serrie tonight?" He sighed. I hate when he sighs. He sighs when he has something he needs to tell me but knows I will be upset. "She was fine I guess...but I think she's regressing", he said. My heart sank. I have been seeing it too. I wanted to believe it wasn't happening but her once clear words were turning into random jargon in which she made nonsensical words for which I longed to interpret and understand. Her momentary lapses of understanding had become mountainous tantrums only tamed by bubbles, being held in a firm grip and evenings spent allowing her to hold my hair in her hand caressing her face. Her language in the last week has been lacking. She's been wandering aimlessly screaming. Yesterday at school she had a bad day and today, the OT at therapy mentioned that she was off too and though I saw a few beautiful moments of interaction, how I longed to see that glimmer of who she was in her eyes again.

This is the roller coaster ride in which I now strap in for daily.

Its Autism Awareness Month. During this month we, "light it up blue" but there are moments in each of my days that are blue, in fact most moments are vividly colored by some amazing moments that drive me to push forward and work hard to help my sweet Serrie succeed. During this month. so much focus is on the kid who went to prom or got asked to prom. There are tons of videos out there of "healed" kids but I am not hoping for a miracle I am just hoping for progress. I am certainly praying not to see regression but here I stand in April in the midst of it hoping that this regression will make way for upward movement in her own journey with autism. Last week I didn't see any upward momentum though the week before was filled with advancement that those moments where I thought for once we may be getting her back have now vanished.

This ride, this life on the autism roller coaster is filled with ups and downs and now here I sit asking, what is going on and why?

Was it the gluten this weekend?

Is it the fact her typical speech teacher is on leave?

Are there new people in her life that we don't know about?

Tonight I quickly emailed my daughters teacher. Could she be seeing what we are? Is there an underlying cause? I just started a new chia seed called Mila? Could it be that? The life of a parent of a child with special needs is something that is high energy all the time. We cannot quit, not at all for if we do, then they falter.

Have I stopped working as hard with her?

What can I do to catch her up again?

Did I put too much on my plate that caused this regression?

How can I bring her back?

So here I sit my once relaxing glass of wine now empty as I try to think about those people who celebrate autism and I am wracking my brain about regression. Some days autism is an uphill climb and I hate it. Other days I want to stare it down and prove I am stronger and will overcome but days like today when my thoughts are echoed by his words hate is the only word that comes to mind.

Comments

  1. We love Serrie and I hate watching our kids and families go through the ups and the downs. Allow yourself time to be frustrated but also remind yourself of the gains she is making. Plus we just love love love her!

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