How to be evaluated by 6 people when you're almost 3.

When you are someone just starting on the Down Syndrome journey as a parent, you learn to dread the IEP (Individualized Education Plan).  What comes before this is the dreaded evaluation, where your child's under-developed skills are put into words all at once.

Today was Evie's evaluation day.  I want to say right now that we had a great experience.  It wasn't horrible at all.  But our experience may be completely different, depending on the town, the staff involved, and the child's needs.  I thought I would jot down my thoughts here, in hopes of helping the parents who come after us.

1. You go through a ton of paperwork. Not only do you have the school district paperwork that everyone else has, but you have a packet of forms to fill out about your child's needs for each category.  This is the first achievement.

2. You hear from the schools about the date of the evaluation.  Having an actual date makes you hyper aware that something is coming, and you try to ignore it and try to concentrate on making the most of the few Early Intervention therapy sessions your child has left.   You make you child do double the amount of walking in her walker down the hallway, like any good tiger mom would do.

3. The day of the eval comes.  You have e-mailed back and forth with the preschool coordinator, and have established that you should bring a stroller, the walker, and the child.  It is a 60-75 minute visit with the following players:
OT
PT
Speech
Preschool Coordinator
Nurse
Potential Teacher

4. The Preschool Coordinator comes out in the cold to help you grab the walker while you are wrestling your child into the stroller in the parking lot.  You immediately feel cared for.

5.  You roll down the hallway, pass the "big" kids of the elementary school, who all wave at the "baby," and you go to the gross motor room.  It is established that the OT will play with the child while the rest of the observe from a short distance.

6. You sit down on the floor with your child, and start exclaiming how awesome the little colored cogs are that are being handed to your child.  Your child does not fall for it, and goes for a huge hug with mommy.  After a few minutes, she is enticed by the wooden farm animals and the string that holds them together.  She is able to transition off your lap and starts playing well with the OT.   You sigh in relief.

7.  The potential preschool teacher comes in, and it feels like a first date. Will she fall in love with my daughter?  You ask how it will work with communicating, and how people will learn her signs. You throw out the words "one-to-one" assistance to see what the response will be.  The coordinator immediately picks up on it and says that your daughter will definitely have a one-to-one.  You want to hug and kiss her because you don't need to advocate for that.

8.  You move to the play area with cushioned mats, and your daughter is simultaneously in love with the ball pit and terrified of being away from Mommy.  She protests at being in the ball pit with the stuffed sharks, and asks to come out.  They take that as a good sign of communication.

9.  The walker is brought in to try to get her to demonstrate her new walking skills. She refuses.  You all sing Laurie Berkner's "We Are The Dinosaurs" and she deigns to take a few steps.  Thank you, Laurie Berkner.  I will send you something for Christmas.



10.  Your daughter signs "All Done."  She has decided that we are done with this little private party.  We go and visit the school nurse, talk about her medical needs, and then wave goodbye, blowing kisses to everyone as we go out the door.  They are all charmed, and you are relieved that she didn't throw a tantrum.  Your child starts to meltdown as you get her in the car, but you made it.

Notes for future reference, now that I've gone through the experience:

  • If Evie had woken up early, not eaten enough, and been a cranky toddler who refused to do anything the whole time, that would have been fine too.  She would have gotten ALL the services, because they would have assumed the worst.  So this eval wasn't that scary for proving that a child with Down Syndrome needs assistance. 
  • I brought a MacArthur Word Inventory, which was given to me by our EI speech therapist. This is a list of common words for children, and categorizes them.  The school speech therapist loved that I brought this.  I counted, and Evie already says more than 100 signs!  The goal before she starts school will be to produce a video of me signing the signs that Evie will do (unless I can get Evie to star in the video), so that the staff can understand how she communicates. 
  • If you haven't done the Summary sheet for your child that was started by one of the moms online on www.canva.com, I highly recommend it!  This gives an overview of strengths, what doesn't work, what does work, and what the child is working on, as well as a photo of the child.  A quick snapshot of the child really helps new caregivers.  The school staff kept thanking me for this.  Here is a link for directions from the creator of the summary sheet: https://our3lilbirds.blogspot.com/2017/05/how-to-make-one-page-profile-ellie-style.html

  • I started an IEP binder that I downloaded online.  I'm not sure how much I will use it, but it makes me feel good to prepare.  You can download this at: www.adayinourshoes.com by Lisa Lightner.

THE END...for now...until the IEP meeting in 45 days!  (You receive a copy of the IEP document 2 days before the meeting.)

Updates on Getting Closer to 3

Tomorrow is a big day. It's Evie's evaluation for preschool!  Our town has a great integrated preschool program, and once she has her evaluation, we will have an IEP meeting to decide what resources she needs to help her to succeed in school, and then off she goes!  *sniff* my baby *sniff*

Evie has had a great 3 months in her new house!  She learned to climb stairs in the first couple of weeks.  We definitely have enough of them (3 flights!)!  Our new physical therapist had a pediatric walker to lend to us, and Evie took to it quite quickly.


I couldn't believe my eyes when I took this video!  I didn't want to cheer too loudly, because cheering makes Evie cry.  But I was jumping up and down inside!

Evie's eating has slightly increased in texture, and also we are trying the straw juice box again.  She is taking small sips of applesauces-water, but still not sucking on the straw.  She is also scooping up food herself from the bowl every once in awhile when she feels like making our day.  

Stay tuned for the next post when I have a lot more to say about entering preschool!


What I Want For Mother's Day

Dear Daughter: I guess the easy answer for saying what I want for Mother’s Day is that I would love a big fat nap. But beyond that, from t...