Yo soy La Lay

adventures in family, faith, and Down syndrome

Jan 8

Prep work

by Maggie

We are getting ready for our next IFSP review. If you remember waaaay back when Tessa was born, I shared that an IFSP is a document that lists all of Tessa’s “goals” for development. The first evaluation and meeting was more than a little overwhelming. Several therapists descended upon my home and spent at least an hour firing questions off about my 4-week old baby’s development…. Then, they asked me what I wanted her to do.

Um. Hmm. Well, she’s a month old, and I have no understanding of reasonable expectations at this point, so I don’t know, you tell me what she should do.

(Which they can’t, because the IFSP is a family plan – family directed. So, fellow Ds mommies, remember that. If you want speech for your child, make sure you write a speech goal. Don’t let them tell you to wait until… until whenever they say.)

I came out of that first meeting more than a little shell-shocked. And I’ve been dreading the annual review ever since.

The difference this time is that her evaluations have happened during regular therapy sessions, so there will be no barrage of questions from four different people at one time. However, I sat through each of her evaluations individually (except OT) and believe me – I have answered enough questions. John also saw his first eval ever (DT). I think it was more than a little enlightening. Now to my most stressful part – goal writing.

Since the first meeting, I vowed to never go into a review without being prepared to get what we need. At the six-month, I wrote several goals for the plan before we met and it made the meeting a breeze – I shared the goals, they wrote them down, we got all our therapies, done and DONE.

Though I know it wasn’t, it seemed easier six months ago. It also seems like I had a lot more no, she doesn’t do that yet answers on her evals this time than last. That is probably not a distorted reality. The older they get, the more checkboxes to conquer. Believe me, I’m ok with the ‘no’ answers today. My own challenge is to figure out how to best help her progress without also making myself feel like I have to spend every waking moment therapizing her (and subsequently feeling guilty when I don’t do all that I can).

No, therapizing is not a word. I know.  Can you forgive my need to make up new words so that I can share our story?  Thanks.  You rock.

She will do what she wants, in her own time. It has been our mantra since day one. And right now, we, her generally mature and responsible parents, are tasked with advocating for the tools she needs to help her do it (whatever ‘it’ is) well. So let’s hope we don’t screw this up. 😉

I’m counting on you guys!!  

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Oct 8

Lesson #8: EI, EI, ooooooh do we have goals!

by Maggie

This is part of the 31 for 21 Blog Challenge!

Tessa’s disability qualifies her for Early Intervention (EI).  Any child who is diagnosed with a disability or developmental delay can receive these services in some way.  Most kids would have to go through a series of tests to determine if they qualify for Early Intervention.  Down syndrome is an automatic qualifier.

In Illinois, Early Intervention is not free.  However, the out-of-pocket cost is very low in comparison to what one might pay for therapies outside of EI.  The monthly charge is on a sliding scale based on income.

Potential qualifiers for EI go through an initial evaluation to determine what services are needed to help the child.  The initial evaluation was the craziest part of the whole process for me.  A lot of professionals sitting in my living room, asking a million questions about Tessa and her birth and her progress (at four weeks old) and then asking what I would like her goals to be… not my shining moment as a mother.

What goals would YOU have for your four week old baby??

So anyway, an evaluation happens.  After the evaluation, when we have determined what the delays are, we write an Individualized Family Service Plan (IFSP).  It explains our goals for Tessa, written in a way that explains what we want her to do (and why).  This document helps direct the services that we receive.  Services received through EI must support the written goals, so it is important to write a plan that covers every aspect of your child’s development that may need help.  Here are Tessa’s goals:

Tessa will continue to progress in her feeding, be able to self-feed and eat a variety of textures and temperatures.
Tessa will begin to communicate with people in her environment (something was added here about all different types of communication, but I don’t remember how we worded it).
Tessa will be able to sit and play without assistance.
Tessa will interact with toys and people in her environment in all of the positions (sitting, back, tummy).
Tessa will begin to move independently by scooting, crawling, and walking

IFSPs are reviewed every six months.  If we want to add any services, we have to have a meeting in which we decide that it is necessary.  John and I are of the opinion that we should “frontload” the therapy now, while we have time (ha.) and it is covered under EI.  The hope is that we won’t have to have quite as much when Tessa is older.  So, she has speech/oral motor therapy, physical therapy, and occupational therapy each once a week.  We currently have developmental therapy once a month, but are planning to increase to once a week in another month or so.  Speech and O/T both go to daycare to work with her.  We have D/T and P/T at home.  🙂

Tomorrow, more on what therapy looks like with a little baby.  I bet you can’t wait.  😉

Tessa

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