Christian Living · Medical Mom

The New Baseline

June came with a lot of hard truths that honestly suck!  I mean, yes I try to be an inspirational blogger that’s main focus is to only put out great positive content, but this one is a hard one to put a positive spin on. When you take away the fluff,  it is just a hard pill to swallow.  First, for those who aren’t knee deep in physical/occupational therapy or the medical field, I really should explain what “baseline” is, because before I had Lilly I had no clue either!

The way that Lilly’s medical team has explained “baseline” to me is, “A person’s day to day life abilities; what they are able to do independently.” 

A huge part of Lilly’s complexity is physical regression. It’s something we have dealt with all her life and often we can regain ground within weeks or a couple of months. The physical regression often throws off her baseline but we recover it and then move forward.

June came with specialist clinics and end of the year IPP meetings. I had this gut feeling going into it that this would be a tough one. I already suspected going into this meeting, that out of her group, she would be the only one not moving up to the next learning assistance program. As her teacher (who is amazing and get’s her) and I started going through things, we started to see a pattern…

They could see glimpses of her ability to do things but something was missing; actually something huge was missing.

Emotionally, she’s regressed in a lot of ways and often acts like a 2-year-old.

My happy risk-taking child no longer takes risks.

Then I asked a tough question “Do you think she could graduate to the next program?”

He looked at me and said “Possibly…”

Not too long after, my girlfriend was over and she was talking about a child whom she suspects has an unhealthy attachment with her Mom. It was like a light bulb went off and I asked her, “Do you think Lilly has one?”:

She looked at me and said, “That makes sense.”

This summer I was going to focus on kicking ass on goals like feeding and swallowing, and physical and occupational therapy, but now they are not my main focus. Instead, I am planning a summer of building a positive attachment, doing activities that build self worth and confidence. Once Lilly is emotionally ready, then she will kick ass on all the other goals!

Note: If your wondering how I am accomplishing this, follow my Instagram or Facebook account. I will posting pics of the shenanigans we get into this summer but probably won’t be putting it into a blog post.

Right now, it’s all about nurturing the kids’ mental health 🙂

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One thought on “The New Baseline

  1. I have 2/4 kids who have autism, and I can understand where this is the one thing you aren’t as positive on. It is hard to take in the fact that your kids aren’t “normal”, and that life will be harder for them. You are doing everything right mama! Hang in there.

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