Evie the Extraordinary and Her Mommy: The Journey As We Go

I'm not talking about signing up with a dentist here...this blog post is about the Department of Developmental Services .  The DDS is fully funded by Social Security and is meant to create partnerships and opportunities for people with intellectual and developmental disabilities to " participate fully and meaningfully in, and contribute to, their communities as valued members." The way I understand it is that DDS is more to help adults with disabilities to engage and function and contribute to the community.  So why are we signing up little 3-year-old Evie?   I'm still figuring that out. I hear that getting into DDS now can help to make the transition easier as she becomes an adult.  The questionnaire to apply was already quite length for Birth-5 years old, so I imagine that it's even harder answering the questions for a teenager.  We can also be connected with the local ARC to have more resources for Evie.   When Evie is older and transitioning to more ...

This year was Evie's first Valentine's Day as a preschooler.  I found out that her class wasn't swapping individual Valentine's Day cards, but that there was an option to put them on the cubbies for each child.  I've been waiting for a very long time to be able to do Valentine's Day cards for my daughter, and darn it, it was going to happen! This is actually for a friend, but shown here for demonstration purposes.  What's inside?  Party sized Playdough!  Envelopes and stickers from jane.com. I want to share why Valentine's Day cards are extra special to me.  Ever since little Evie was at just 10 week of gestation in my womb, I had to process a lot of fear about what it would be like to have a child with Down Syndrome.  One of those fears was that she wouldn't have any friends.   Yesterday, when she came home with a pile of Valentines, I was pretty excited to go through them.  The ones that unexpectedly most touched my heart were ...

Something I never thought I'd have to do when I first got pregnant was that I'd need to explain to the other kids in my daughter's class what's different about her.   And honestly, after spending a month in preschool, I don't think the other kids see too many of the differences.  The letter is more for the parents, so they won't be caught off guard if a child goes home talking about a "plastic tube that goes into Evie's stomach," or asking why Evie has a wheelchair and a walker. Evie modeling her pink wheelchair!  Insurance wouldn't cover the light-up wheels I selected (for some reason...) Our preschool team has been amazing, and one of their suggestions for the transition was to write a letter to the other families in the preschool class, explaining the g-tube in case the children asked about it.  They put me in contact with another mom, whose tubie is now in 3rd grade and flourishing. So a lot of credit goes to this mom, who gave permi...

Evie stands voluntarily now! The thing about having a toddler on a feeding tube is that they become more active, and burn off the calories you work so hard to put in to gain weight.   It used to be just using Pediasure formula to fatten her up when she was an infant, but it's more complex now. She actually weaned off eating with the iPad (whew!), but I wanted to show that she likes chocolate pudding! In the latest chapter in the saga of helping Evie to gain weight, we hit a plateau where we were giving her formula by tube and then feeding her pureed foods orally, but she was still growing at a slower rate than optimal.  At that point, the GI doc was concerned, and we could start seeing her ribs, despite adding oils and Duocal supplement to every meal.  We were so close to weaning her off formula, and then she started learning to walk and going to school to learn to be a big girl!  It felt like a step backwards to add back in more formula.  I was so...

I didn't cry.  Everyone warned me I would cry, but I think I was too busy trying to unfold Evie's walker and help Erick with her wheelchair, and forgot to be emotional about dropping off Evie on her first day of preschool.   Evie didn't even notice that I left.  She saw kids playing with trains, and I plopped her down on the rug and left.  I kissed her goodbye and she didn't even blink.  She was too busy looking at the trains. The preschool coordinator came to meet us, and took over, and that was that.  We left our precious cargo in SCHOOL! One of the moms introduced herself in the hallway.  She said that her kids were told about Evie before she came, and they were all excited to have her there.  That meant so much to me. Evie actually has a Rifton chair that has a picture of her on the back so that other kids don't take her chair.  Rifton chairs provide more support for a kid who needs more support to sit for long periods of time. ...

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 ladi...

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 l...