What to do with a severe and profound label for my daughter with Down syndrome?
I am immobile this morning.
Sergei and I had a an eligibility meeting a few days ago with our daughter Evie’s (6 years old, Down syndrome, adopted from Ukraine) school regarding her services and placement. 2 hours 15 minutes later, we left with a promise to reconvene in two weeks, and somehow I feel like I got in a fist fight (usually do after IEPs).
Evie tested in the severe range of disability globally for her three-year re-evaluation. Her team at the school suggest we place her in a severe and profound classroom, so Sergei and I are researching here in Chicago with plans to visit schools. I don’t want her in a severe classroom, but I also don’t want her to get lost in a moderate classroom (where she’s been, and she does get lost a bit). The psychiatrist said it was difficult to test her because she wouldn’t do, well, anything.
I seriously don’t know what to do … And having the severity of her delay on paper is knocking the wind out of my sails, even though I knew it already.
Bad timing to feel like I am losing my voice when I need to speak on her behalf.
So, what should I do?
Well, I know there are a few things I MUST do:
1) Pray. I am a person of faith, so I should take this conundrum and all the emotion and questions wrapped up in it and place it at God’s doorstep.
2) Research the severe label and visit severe and profound classrooms in the city to see for myself if this setting would be a good fit for Evie.
3) Let myself grieve the news. You can’t get above, below, or around this kind of stuff. You have to go through it.
4) Spend time with Evangeline. At the end of the day, she is still the same little girl I know and love … so I’ll focus on her, and thank God for her, and put the papers away, at least for a little while.
What do you do when dealing with difficult news? Any of you have a child in the severe and profound disability range?