How old are you, Evie?

Dear Evie,
I can not believe you’re 3 years old today! You have brought joy and so much life (and less sleep) to Mommy and Daddy. In the past year, you have become so animated and curious about your environment. Calling you “my little troublemaker” has made me so happy, because it means you are getting stronger and able to explore on your own. You love horsing around with Daddy. Your infectious laughter when we put something on our heads to be silly turns a hectic day into the best day.  When we read "Daddy Hugs," the last page of "Goodnight, Dada" sets off a long monologue about Dadadadada and how much you love Dada.  

I think you know how loved you are, Evie.  Mommy and Daddy can’t stop kissing and hugging you, and sometimes you surprise us by spontaneously giving us open mouthed kisses to show your love.  You have definite reading preferences and want to put on your own socks...on the same foot. You like purses, even when they belong to ladies we do not know.  You are doing great with your walker, and going longer distances now.  You climb stairs like a champ.  When mommy's not looking, you put random things in the closet or cabinet to surprise me later.
I'm 3!

Mommy was a little nervous about your 3rd birthday. Turning 3 meant that your army of therapists, who have been such a part of our lives, were unable to come to our house anymore.  3 meant that you are a big girl and that you will go to school.  But in the last few months, you have showed us that you are ready to go to be a big girl at school, and that you will love it.  You will learn new words, meet new people, and have new experiences.  We are so proud of you, Evie!   Happy Birthday, my precious girl!  May this year be full of joy, growth, strength, and fun experiences!

Enjoying birthday chocolate mousse!

Our very first IEP: Achievement unlocked!

Today was the big day--the IEP meeting.  I've been primed to dread this day for years--pretty much once my baby was born and I started joining special needs' forums online and heard about this mysterious IEP when your child turns 3.  I hope that I can share our experience to help someone, knowing that every child's experience is different, and every town is different.  I will say that we have had a wonderfully smooth and informative experience!

Here is a timeline of how things went down for Evie's entrance to preschool.

1.  6 months before she turned 2, we started hearing scary phrases like "when she turns 3" and "IEP" and "transition planning meeting."
2. Transition planning meeting: Evie's entire EI team congregated in our living room and talked about her skills and goals.  In my mind, this is probably when I made the transition from "coddle-the-NICU-baby" to "treat-my-daughter-like-a-big-girl."
3.  In the last remaining months with our EI team and the Down Syndrome Clinic team, we were able to get a posterior gait walker ordered and a wheelchair for transport to get ready for school (these take about 3 months to come in!).
4. Our EI made the referral to the new school district.  We promptly received paperwork and scheduled a visit from our friendly preschool coordinator (who is AWESOME).  She came to our house and spoke to us about what to expect.  This is when I handed her the handy "All About Me" summary sheet that I blogged about in my last entry.
Credit for this goes to:

5.  Filled out a 20-something page questionnaire on Evie's skills, goals, dislikes, likes, health history, etc.  I had to remember how much she weighed at birth, which amazingly I had to ask my husband for, because I was too out of it when she was born.
6. The Evaluation happened (per my last blog entry), and we got back a long narrative about her scores on the Battelle test way back when she was barely 2 years old, the skills she exhibited when she visited preschool, and a list of goals and accommodations for each category (PT, OT, Communication, Social/Emotional, Medical).  This can happen in playgroup, in the home setting, in school, etc.  Our coordinator came to our house twice to observe Evie at home to make sure she didn't miss any skills that she had missed when Evie was shy during her team eval.
-->I would say that either at the evaluation or shortly thereafter is the time to send videos of your child's signs or send the the summary sheet.  This is when they are formulating their perception of your child's skills.  By the time you are in the IEP meeting, they have already formed their perceptions into words, and are harder to convince otherwise. 
7.  The IEP.  

That brings me to today!

We went to the IEP meeting with 2 therapists and our current service coordinator.  We were told by many friends to bring an advocate, but I was also warned that bringing an advocate straight off the bat can be seen as a negative thing during the first meeting.  We thought a nice balance was having our former therapist there, who knew our family and Evie very well.  We also didn't expect too much of a challenge though in getting services.  The meeting was well planned out.  We were given a chance to voice our overall goals and concerns, and then we went through the written evaluation step by step.  I will take you through ours a bit just to give you an idea:

Overall: Evie will be assigned a 1:1 aide, so that she always has personal attention.  This is more for safety reasons according to the school, since she doesn't walk or talk or eat safely yet.  She will be in an integrated classroom. Half of the kids have special needs, and the other half are kids from the community.
The school day will be a half day, starting at 8:30 and ending at 11:45 am.

Medical: The nurse wrote a very thorough summary of Evie, starting from birth. (I had a little PTSD episode as she was reading the NICU stay, the heart surgery, and the traumatic 42 days in the NICU trying to get Evie to gain weight!) I had provided her not just with immunizations, but her NICU discharge notes, and notes from every single specialist she has seen (and we have a small army).  She really appreciated all the medical notes.  If you are on a patient portal and you can download the chart notes, the nurse will love you.

We discussed the care for her g-tube, and how we will feed her at school.  Because Evie has strabismus and amblyopia, her visual needs in the classroom still need to be assessed. The school will bring in a teacher for the Visually Impaired to assess how to support Evie.  In addition, if Evie needs a feeding therapist as the year goes on, the school is willing to bring in a private therapist during the school day to do a consultation for them to advance her feeding skills.  Amazing!!

Communication: Evie uses more than 100 signs.  We provided selfie videos of Evie happily doing her signs, so that the team could build an understanding of her vocabulary.  She will be able to use Total Communication, meaning signs, words, PECS boards, and other electronic devices to help her communicate.  I asked for a copy of whatever tools she uses at school so that we can do the same at home.  Evie will be getting a binder of her PECS boards for use at home, and insurance may help with covering some of the devices due to her diagnosis.   She will have 2 30 min sessions a week in the classroom.

sample PECS board from board

Occupational Therapy (OT): We discussed what Evie will be playing with, like taking objects out of a box while holding the box in one hand, and placing objects back with accuracy.  I got a little excited and asked if I should buy her a peg board, but the OT said to wait until they get to know her better, and then they will let me know what to get to reinforce skills at home.  She will have 2 30 min sessions a week in the classroom.

Physical Therapy (PT): Evie will be working on her walker and transitional movements in 2 30 min session a week in the class and out of the classroom.  They have a neat therapy room with a ball pit, a swing and a slide, so I think she will have fun!

Evie will get lots of playground time!
Social/Emotional:  Working on interaction with peers, making requests without prompting, participating in group activities, etc. This happens throughout the day in her classroom, so the teacher is in charge of that.  Evie's class has 15 kids and 2 teaching assistants, plus her own aide.  We visited the classroom, and the kids were sitting at the table quietly, working on activities.  It made my mama heart happy to feel the warm and fuzzy atmosphere in the room.

Summer School:  There was no question that Evie would get summer school.  They stated they do not want her to regress.  So that was nice to hear.

By the time we were done, my stomach was growling.  The whole meeting took 2 hours, and it was already quite straightforward!

What's next?
We will visit Evie's new classroom, first when no one is there, and then when the kids are there.  Evie also has a social story (i.e. book) that I made with pictures sent from her new teacher.  This social story helps her to hear about what will happen, and to see pictures of the new people in her life. It worked so well with our new home, so we are hopefully it will happen again with her new school. was helpful for a quick turnaround!  I also love PintSize Productions. They make board books of excellent quality. 

All in all, we feel very supported and the whole team was excited to have Evie join them.  I can't wait to see how Evie grows in the next year!

Evie's Favorite Masks

 Hi all!  This is Evie, and I want to share with you about my favorite masks. Mommy tried a few different types, and this is the one that I ...