The "R" Word

This has been a hard week.

We struggled with whether or not to take Eli out of the school system and strictly do ABA therapy at his clinic. We love his clinic. If you could see where he was four months ago and to see him now ... you wouldn't think it was the same child. His progress has been incredible.

Unbelievable, really.

Well, two weeks ago you would say that.

I have read about regression and taking ten steps forward, four steps back. I knew it existed. I knew that it was an incredibly emotional part of this roller coaster. I knew that transition was a time that parents of kiddos on the spectrum hold their breath and watch.

I knew that.

I just ... I didn't think we ... I didn't think we would see it right now.

Eli is on an extremely exhausting and rigorous schedule that we are probably going to need to change. Monday through Thursday he is in the school system. We chose to keep him in this program because he was moved to a different teacher in a different setting. She communicates daily with us and really understands how important structure and boundaries are with kiddos like Eli. She holds firm with him and he hates it. He went from a classroom with no structure, no boundaries, to a place where he has to "earn the train table" and "earn the tracks" and share the trains. This is where he will (hopefully) go to kindergarten. One of Eli's greatest struggles is acceptable social behavior. He doesn't know how to communicate and interact and "play" in a socially acceptable manner. He hits, he doesn't stop moving, he needs what he needs right now. Having him in this setting is important for him because for him to be allowed in a regular kindergarten classroom he just has to know how to sit still, and play, and wait, and just be around two dozen kids.

It's an extremely important goal for our kiddo. It is our number one focus in therapy and daily life. He can look at alphabet flash cards and identify those letters (sometimes faster than his brother), he can do the same with numbers up to twenty-five but he can't let another child touch a train...

I want so much for him and he's come so far.

We love his clinic - the hour-away clinic that he still goes to three-days-a-week - but they can't offer him that same social environment. They work on it but they can't mimic the preschool setting. They work on food-intervention and potty-training and proper behavior and labeling and expanded speech.  They are the people that made it possible for my son to look at me and say, "Mommy, I'm sad," during a time that he really was sad. I cannot explain how invaluable that is to this kiddo!! They are a key-part of this journey.

On Wednesdays he goes to speech and occupational therapy. It took three tries before we found his incredible OT. She understands his sensory issues spot on. His speech therapist has been with us since the beginning of this journey.

Every single one of these aspects challenges him, and he is in a place where he hates it. He has to work ... hard. He has to do things that he doesn't want to do and doesn't understand why he has to do them. His defiance wears him out. His anger shuts him down.

He's so tired and frustrated. He's moving backwards.

And I know this is part of it - a HUGE part of it. I know that regression is almost guaranteed with transition. I know it.

I know it. But, God, it's so hard to see it! It's so heartbreaking and soul-crushing to watch your child struggle and move backwards. I want to squeeze him and help him and push him through it.

But I'm still learning so much. It's hard to swallow the reality of the cycle - that there is a cycle - and that it's going to take a lifetime to break it.

Trial and error. Sorrow and joy. Heartbreak and Hope.

One day at a time. Step by Step.

Until we're back on the "moving forward" part again.

I love you, Little Giant. It's going to be okay.