Signing up with DDS

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 independent adult living, she can have a DDS worker help her to learn further skills to do so. (My more experienced DS mama friends, feel free to comment!)

I wanted to blog about our DDS interview and the process so far (This is in Massachusetts, so not sure if it's different in another state). 

I sent in the lengthy questionnaire about Evie's birth and medical history along with a copy of her IEP back around Thanksgiving, and heard back from the eligibility coordinator during the first week of February.  She came to our house today and brought 3 packets full of questions to ask me.  She actually did not need to do anything with Evie; she just needed to see Evie to confirm that she exists and seems to have a disability.  The rest of the time was to answer questions about Evie's development. 

We went through medical history briefly, demographics, and safety issues.  She then went through each category of development, like Receptive Communication, Motor Skills, Social Skills, etc.  I was pleased that Evie was an "All the Time" for questions like "Can she identify at least 10 alphabet letters" and "Can she follow 2-step instructions."  There were other skills like being able to draw shapes other than a line or to recognize her own written name that I could not say yes to.  But all in all, I felt proud of her accomplishments. 

The 30-minute interview ended, and I asked her what was next.  She said that while there are 5 interviewers, there is only 1 psychologist, and he has to review all of the applications.  So she estimated that we would not hear back for another 4 months.  I expect that we will hear that we have been accepted into the DDS system and then they will connect us with our local ARC and we will go from there.  If Evie needs certain augmentative communication devices or other assistive devices, they may be a good resource. 

Hope this helps someone know what the process looks like for applying to DDS!  

Why Valentine's Day cards are extra special to me

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
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 the ones that said Evie's name on them.  My daughter was thought of and included.  Someone took the time to write her name personally (and when you're 3, that means the parents did).   I completely understand that getting valentines done is just another part of parenting when you're busy.  But I want to share how much it meant to me that they took the time to individually address these cards.  They spoke to my mama heart and were just another piece of evidence that Evie will be ok in this big world.  

A sample of some homemade cards addressed to Evie
 Evie, on the other hand, was most fascinated by the holographic My Little Pony valentine.  Oh well.

A Letter to My Daughter's Class

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 permission for them to send me a copy of her original letter, so that I wouldn't have to start from scratch.  She provided the framework for me to explain g-tubes and Down Syndrome, as well as hypotonia.  Our letter is below--I hope that it helps another DS mom entering preschool with a g-tube!

Dear Families in Ms. X's Preschool Class: (Names removed for privacy)

We wanted to first of all thank you for your wonderful children, who have welcomed our daughter Evie with open arms.  We have heard that her classmates are independently coming to play with her, patting her on the knee and telling her not to be scared, or announcing that “Evie is beautiful.”  This has meant the world to us, as starting preschool for a child with disabilities can be daunting.  This letter is to help you to understand a little of Evie’s special needs and what your child may see in the classroom, so that you can help your child to understand if they have questions.  We are very open and happy to answer any questions or concerns you may have.

Evie has Down Syndrome (DS), which simply means that she has an extra copy of her 21st chromosome.   We call her Evie the Extraordinary, because she has overcome so much in her 3 years: 5 weeks in the NICU, open heart surgery for holes in her heart, eye muscle surgery, so many doctors’ appointments, and a feeding tube.  

Evie received a feeding tube at 5 weeks old because she did not have strength to eat. Your child may see the nurse or Evie’s aide attach plastic tubing and a syringe to a small port in Evie’s stomach to “drop in” some formula.  We usually tell curious kids that Evie doesn’t know yet how to eat much with her mouth, so we have to give her “milk” through her tummy. Evie can eat pureed foods (i.e. applesauce, pudding, etc), but other textures like crackers are a choking hazard because she doesn't know how to chew or swallow thicker foods safely.  She is learning to feed herself, and we are hoping that her classmates will inspire her to try this more!  

You may notice Evie’s purple walker or her pink wheelchair in the hallway, or her ankle braces for extra support.  Walking is something that Evie is working on, because her muscles are weaker. She has a special chair in the classroom for more support while she sits. She is learning to use all of these tools to be able to get around like her peers.  When she is tired, she will still crawl to get around.

While Evie does not know how to speak much with her mouth, she knows more than 100 signs in sign language.  She also uses a book of pictures that are specially made for her to be able to point to what she wants to say.  Evie understands a lot more than she can express.  She knows colors, letters, and is learning numbers.  She loves books and singing, and definitely enjoys circle time.  

All of that being said, Evie is just Evie!  She is not defined by her Down Syndrome.  She is a feisty, affectionate, curious 3 year old girl who loves the Itsy Bitsy Spider, playing with blocks, and playing with playdough.  We are immensely grateful to Ms. X, the teaching assistants, and Evie's aide as well as her classmates who are helping to teach Evie new things.  If you have any questions, please feel free to ask us.  We are looking forward to getting to know all of you more!

All the best,

Amy and Erick

In case you wondering, after the letter was given to all the families, everyone made an effort to say hi to us, and acknowledge Evie when she arrived at school.  It's a relief not to have to explain things over and over again, or receive questioning looks and wonder what people are thinking.  We are grateful for a proactive preschool team! 

Jumping and Friendship Crafts with Evie

This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about mak...