Exceptional Care

Dutch and I met with Jacky’s support coordinator yesterday to make some changes to his care plan. I learned that because of the nature of his disabilities and the intensity of his behaviors, Jack requires what is coded for billing purposes as exceptional care.

It was the most validating thing I’ve heard in ages.

No kidding he needs exceptional care! Deep down I’ve known this forever, but hearing Shannon define it so simply and clearly was oddly liberating.

Jack requires exceptional care. Amen, and amen. Also, duh.

This is why our lives are a vortex of wild and crazy. We are trying to do normal things like work and raise other children and be social and give within our community, while the entire family spins and whips around Jack’s exceptional needs.

It makes so much sense! This is why things are always precarious, why anything added to our lives is like tying a sandbag to the ankle of a person dangling from a cliff.

I feel less unhinged. The state of our household has been unequivocally defined as beyond typical by accepted standards in the field. Even among other people with disabilities, our Jacky’s needs fall outside the norm.

We are outliers. Knowing this and having the correct options because of this distinction feels like the patter of rain, dropping a blessing on our house.

  4 comments for “Exceptional Care

  1. Blue
    February 18, 2015 at 11:02 am

    i hope this results in extra support and services to ease things for the whole family. very glad you got this news. you’re an exceptionally caring person, and have done an exceptional job of holding things together, but you really do deserve exceptional breaks and blessings. you’re in my prayers, beautiful megan! <3

  2. Louise Plummer
    February 18, 2015 at 1:04 pm

    You ARE outliers. Aren’t you glad Malcolm Gladwell introduced us to that word? It’s always nice when someone recognizes that we are dealing with exceptional circumstances. I hope it leads to more support!

  3. February 18, 2015 at 4:23 pm

    Amen and amen! xo

  4. Mary
    February 22, 2015 at 9:39 pm

    We don’t require exceptional care, but I do know the relief of feeling validated.

    During one visit with my son’s previous psychiatrist (who I loved, but she moved), my son was being his usual self (you know, blunt, loud, repetitive, maybe a bit inappropriate). The psychiatrist looked at me and said, “you do know that you are a saint and have already earned a spot in heaven?” Although I know that I am far from a saint and my spot in heaven is definitely not secure, it felt so validating for her to notice that regardless of my love for my son, being his mom can sometimes be exhausting and require more patience than I can muster. It just felt good having someone (and not just anyone – an expert) notice that it wasn’t easy.

    Sometimes when a day is particularly hard and I find myself being a bit too snappy or wanting to throw in the towel, I remember her saying that to me and I once again feel validated, suck it up, and find myself trying a little bit harder to be saintly. So, Megan, if I am a saint and have already earned a spot in heaven, then you are the leader of the saints and have earned the house right next to God.

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