My apologies to anyone who tried to look at the pictures yesterday. I didn’t know they weren’t working until dinnertime.
It’s 7 Quick Takes Friday, and today I’m focusing Transition—the process of moving out early intervention and into Early Childhood Special Ed.
1. Yesterday we had Julianna’s very first IEP (Individualized Education Plan) meeting. In the baby/toddler years, everyone comes to you, and it’s called an IFSP (Individualized Family Service Plan).
2. At that meeting, for the first time in her life, we got some numbers on Julianna. At the age of three, her
- communication skills land between 13-18 months;
- cognition (what her little brain processes) is akin to a typically-developing 16-18 month-old;
- motor skills (a combination of gross motor, which is walking & strength, and fine motor, which is manipulation of objects: puzzles, utensils, etc.) are at 21 ½ months;
- adaptive skills (how she puts it all together in interacting with her world) are at 23 months;
- And finally, she has some “Emerging skills” at the 24-month level.
3. One of the things that all our therapists have had in common is an unwillingness to give us these kinds of numbers. They don’t like labeling. They don’t think it’s useful; they’d rather focus on reaching the next milestone than pigeonholing her at a particular developmental level. But I do find it refreshing to have this snapshot—to know exactly how far behind she is.
4. Julianna’s educational diagnosis—for the moment—is “Young Child with a Developmental Disability.” Strange though it may seem, Down syndrome does not qualify as an educational diagnosis. She also has a secondary diagnosis of “Vision Impairment.” That was news: her vision is more an issue in her development than we had realized.
5. It was my first lesson in the way the education system works. The law doesn’t allow them to simply say, “Your daughter has Down syndrome; therefore let’s make a plan for her.” First they had to detail every area of development, tell us how far she had to be delayed to qualify for special ed (uh…duh?), show us every number. Not until thirty minutes into the meeting were they allowed to say, “Okay, her number is ___, which clearly qualifies her.” Part of me wanted to shake my head and say, C’mon, did we REALLY have to go through all that to get to this point?
6. It was an emotional day. We had our very last PT with Gerti, which ended in a big rush to get out the door so I could get the kids to the family who was watching them while Christian & I had the IEP meeting. The service coordinator who has shadowed us for the first three years is also being replaced, so we had that goodbye yesterday, too. Today we have our last OT and Speech therapies.
7. What you may not understand if you haven’t been through it is how close we have become to these women. They are resources and teachers to us, and they work more closely with our children than any teacher in the regular education world ever will. And I say that without exception. It’s not just because it’s one-on-one. They are closer to my daughter than I will ever be to a flute or voice student. There’s a great deal of touch involved in the therapies—especially PT and OT—hand over hand contact, manipulation of limbs, support of muscles. Touch binds people together.
Well, I could go on, but that’s seven, and this is not a particularly organized set of thoughts. I’m recording and processing as I write. Hope you’ll forgive the meandering. Happy Friday, all.
Kathleen M. Basi 
All you go through in terms of assessment and therapy is exhausting just to read about!
Is it right to understand the vision impairment diagnosis as actually a good thing since it might indicate that Julianna could have an easier time after eye surgery someday? I know that these things are never that simple, but wonder whether to read this as just another bad, or something that is potentially good.
I think it’s just an “is” at the moment. As best I can tell, her impairment is thus classified b/c they can’t ask her if they have the right glasses on her. They wanted it on the initial assessment in case sometime down the line she does need something more. It was just unexpected…but we have TERRIBLE eyes, and expect all of our kids to be in corrective lenses by the second or third grade, so I hope that this isn’t a sign of worse things to come.
Oh well, who has enough credit to borrow THAT much trouble?
When my sister went through the IEP process for her daughter (with autism) I remember her mentioning a sense of relief once a diagnosis was made and finally getting a number. She received a full report that let her see that her daughter fell squarely in the middle of the spectrum, etc.
I was reminded of that as I read your post.
It must have been a stressful process to go through, but hopefully they’ll put a plan in place that will really help Julianna as she moves forward. I bet it was hard to say good bye to all the therapists you have had…I know that Kasandra (my niece) gets very attached to her therapists and to things she does for therapy (she does HORSE therapy) and it’s hard for her to miss it or change therapists.
Thanks for the words of support, Michelle.