Vocab lessons

Words like “IFSP”, “AFO’s”, “atypical development patterns” – these have all become part of our vocabulary over the past few days.

I knew about the IFSP because of going through Early Intervention therapy with Karissa. It means basically that your therapy “team” gets together to evaluate your child’s progress in their therapies/programs, and assess the goals you set at prior IFSP’s, and set new goals for the next IFSP.

I was a mixture of apprehensive and excited about Kendall’s IFSP on Friday afternoon. Apprehensive because even though I know she’s delayed, seeing it on paper, in black and white, with objective numbers next to it – it does something to you as a mom. When we had her intake IFSP, she was almost 5 months old. She was rated to be equivalent to a 2 week old at that time. That was hard to take. This time, it was a little better. At 11 months old, she is roughly equivalent to a 6 month old across the board. Still about the same amount of delay, but somehow easier to swallow. That’s where the “atypical” came in. According to our paperwork, there’s “normal”, “normal but delayed”, and “atypical” – roughly equivalent to severely delayed. But you know, euphemisms are nice. They are good. I can handle euphemisms.

In essence, no one knows really what else to do to help her learn the pathways she needs to create in order to continue gaining motor skills. She has offically been labelled with “motor planning delay” and “sensorineural input dysfunction” – which i think is all just therapist-speak for – this kid needs to get her act together!  She can’t plan ahead to learn how to move her arms and legs together, she doesn’t, in fact, even realize that she HAS arms and legs that SHE can control, and she freaks out if anything assaults her senses too quickly (movement, sight, sounds that are out of the ordinary, etc.) It’s a lot to take in and digest and i am still trying to do so for myself. It doesn’t mean she can’t work through some of these issues, but its another reminder that its going to be a VERY VERY long road ahead to her being normal, or even remotely on a level with her peers.

Her darling DT whom i love looked at me and told me, “we are ALL so very proud of how far Kendall has come in the past 6 months, but we are going to expect SO MUCH MORE from her for these next 6 months. Or that’s where we are going to start seeing really huge delays. Where her peers will be up and running and exploring their world this next few months, we’ll be working on kendall learning that her legs are attached to her body, and that her hips aren’t supposed to bend backwards. Where her peers will be learning new words and learning to communicate, we will be rejoicing when Kendall starts adding consonants in to her vocalizations. It is going to be a long and hard six months, but we’re all here to go through it WITH you.” Like i needed extra incentive to cry.

There was more but i am tired and need to sleep to continue processing this stuff. I’ll come back to it more this week I am sure.

have a happy weekend!

 

terra

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Comments

  1. since we don’t go through EI, we don’t get those handy dandy evals. Sometimes I wish i could see it in black and white, but other times I’m grateful for what her therapists and neurologist have told us: Anna is on her own schedule. She does not fit neatly into a 20mo box. If Kendall doesn’t “do” what a 12mo should at least she’s making progress. And progress IS progress, no matter how slow.