The gifts are wrapped. The groceries are bought. The laundry is done. We’re ready! I’m happy to have time to enjoy some peace before the chaos (that I love!). I’m happy that there IS peace.

So much is different this Christmas than this time last year. Kelsey has blossomed! During the summer she started “talking.” I put that in quotes because it was more babbling than real words. But it was babbling we were so, so grateful for. 

 Around the same time she started gesturing more. Shaking her head “no.” While some parents may become frustrated with the constant “no’s” from toddlers and preschoolers, we were ecstatic. COMMUNICATION!

The babbling quickly turned into real words. Her first word was “shoes.” Seriously! She loves her shoes, especially one pair of Stride Rite sneakers that I will never hand down to friends. She also says “cracker, thank you, phone, go, no, home, love you, this, these,  and orange juice”as well as about 15-20 more I’m forgetting. And there’s more everyday. 

“Hi” is her personal favorite. That one can become exhausting because she says it about 100 times a day. She wants to say so much more but “hi” is easy and always, always gets a response. It’s her way to engage. She says “Hi” and blows a kiss to every stranger on the street who will listen or engage with her. My once cranky 18 month old is now a three year old social butterfly who wants to make everyone in her path smile.  

Kelsey is also repeating so many things we ask her to and many things we don’t. It’s so exciting. It’s HOPE! One of my favorite things to have her say is to answer “What does Santa say?” She has the cutest little “ho, ho!” answer. I must get that on video to be able to remember it forever. Too precious. And even more than cute, it’s an answer. It’s not just repeating, it’s connections and responses. Such a little thing is such a big gift for us.

Communication has also come to us in an unusual way (for most). Kelsey embraced the PODD she was given at school and is using it to talk to us as well as her teachers, therapists, and caregivers at church, the gym and even at parties with friends and neighbors.

In case you’re wondering, here’s a little information about PODDs that I found from a google search. 

PODD is a way of organizing whole word and symbol vocabulary in a communication book or speech generating device to provide immersion and modelling for learning.

The aim of a PODD is to provide vocabulary:

• for continuous communication all the time
• for a range of messages
• across a range of topics
• in multiple environments.

PODDs can have different formats, depending on the individual physical, sensory and communication needs of the person who will use it.

PODDs have been developed over the past 15 years by Gayle Porter, a speech pathologist with the Cerebral Palsy Education Centre (CPEC) in Victoria. Each PODD format has been shaped by the experiences of both children with complex communication needs (CCN), and their communication partners.

In layman’s terms it’s (currently, for us at this stage) a large spiral bound book with hundreds of pictures to share a message.

 Kelsey loves her PODD and loves communicating with it. She especially loves talking to her teachers with her PODD because they are the experts. The focus and attention she gives her teachers when they are using the PODD to talk to her is incredible for this mom to see. In ten minutes in her classroom, I saw intelligence that I hadn’t before. So much of what we assess of people’s intelligence is based on how they communicate.

 When there is no communication…no pointing…no gesturing…no signing, one can assume there is little intellect. And that is so not the case. Our girl is very, very smart. She just needed the tools and “smart partners” to help her show what she knew and what she wanted to learn. We are so grateful for the Caroll County School System and our “home” school that happens to have some of the best of the best when it comes to using the PODD and teaching students with differing needs. It’s been a game changer for us. I hope one day she won’t need the PODD but I’m grateful for it now. 

Another unexpected gift we have recently received is a new diagnosis for Kelsey. Nothing has changed for her but this diagnosis provides a new way to think about her. In October we were given the diagnosis of Cerebral Palsy. It’s surprising, even to me, that this could be a gift. Cerebral Palsy is a term that could send a lot of parents into a tailspin of depression. Heck if you had told me this three years ago (or even 1-2 years ago) I would have gone into my own downward spiral.

But now, after a couple months to process it.  I am actually thankful for the CP diagnosis. Would I rather she not have it? Yes. I would also rather she didn’t have hydrocephalus, epilepsy, and hip displaysia but that’s where we’re at. The reason I actually like the label of CP is because I don’t have to explain it. It is a widely known term and explains “everything” for me. Especially to strangers. 

Recently I was talking to someone about American Girl Dolls and how this woman was excited to give her granddaughter a doll for Christmas. Kelsey’s not into dolls yet but I explained how I hoped she would be and that I was so impressed with the company because they have dolls who she could specifically relate to since she has Cerebral Palsy.

My comment definitely took the woman by surprise but after a pause of pity on her part, she quickly was able to understand me as a mother, and Kelsey as a three year old without having to explain her whole journey. Well first she had a stroke In utero…then she developed hydrocephalus…then she…and on and on. And I could share about my precious daughter when before I may have skipped it because it would be too hard and long to explain for a conversation with a stranger.  

I also can find positives in the CP diagnosis because it eases my worry a bit. I’m not as stressed about all that Kelsey will or will not do because we have that diagnosis. It brings me peace with who she is. Sidebar–I’m probably also at peace because of the steady stream of progress and development we’ve seen in the last couple months, but still, it’s all adding up nicely.  

Cerebral Palsy certainly doesn’t define Kelsey but it allows us to fit in a certain box or category. That’s not always a good thing but with our repetoire of diagnoses, this one is known and more understood. 

Ben’s Menkes is very foreign to most people–even doctors! Kelsey’s journey is tough and long and while she suffers from more “common” disorders, putting them altogether under the CP umbrella is helpful. I’m hoping we are able to start to connect with some parent and family communities with this diagnosis too, like we have with our dear Menkes community. 

This Christmas we have many gifts that we are thankful for. 2016 was actually a wonderful year for our family. We are praying and hoping that 2017 brings us even more Copper Luck and Hope. We wish the same for you and your family as well. Merry Christmas and Happy New Year!