In this house we celebrate the little things. This year, I found my joy in the fact that Abram was interested and able to tear into and open his own gifts. It wasn't long ago that the sound of tearing paper would send him over the edge and we would have to retreat while everyone else got to open their gifts. This year he wanted to open ALL the gifts.... even his cousin's.
When he really liked a particular toy or gift, he'd sign "open, open, please!" and have us pull the toys out of the box right then and there. His favorites so far were a large garbage truck, a cool semi his grandma got him that shoots cars out the front of it and a very special swing he can get into. I was hesitant about the swing and was worried that it might not be a good fit for his sensory needs. We'd tried something similar at therapy years ago and it did not go well, so I'd put this purchase off for a great deal of time. It turns out, he LOVES it and could spend a great deal of time just hanging there getting pushed in it. By the time he's done, he's literally folded in half and happy as can be.
My favorite part of the Holidays is getting to see all our favorite people. My dad was able to come visit us and he brought Abram a school bus from he and his wife, Dorie. Abram LOVES his Gramps n' Nana so he always gets so excited to hear that his Grandpa is coming for a visit and of course I have a video of such excitement. The fact that he says "yeah" seriously makes me want to cry all the happy tears.
Two of my oldest and closest friends were able to stop by with their husbands. I am always elated when our friends are able to come and visit. We live just far enough out of the city that it requires effort and planning to do so. I'm very lucky to have these great people in my life. Especially when the embrace my child and love him like he is their own family. Abram is lucky to have a very special "auntie" or two.
We also were able to see my husband's side of the family and spent Christmas Eve day with all of his cousins, his Grandparents, and he even got to play a fun game of "Plinko" where he won $16 and he was quite proud. He definitely did not want mom taking the money for safe keeping. He wanted to hold on to it tightly, which made me giggle. He had a blast putting the coins into the plinko game and was so excited to sit on the floor and open all his new toys. He now even has his own little dedicated device to watch his youtube videos on which is something that helps him calm down and gives him much enjoyment!
For me, the true meaning of joy is seeing Abram overcome his fears and do the things that people told us he may never do. He is such a hard worker and fights hard for the abilities that he has and the hurdles he's overcome.
Seeing my little boy getting excited to see his family at Christmas is heart-warming. He's such a sweet little boy who wants to be friends with everyone. He has so much happiness inside of him that I turn to him on hard days and he always finds a way to make me smile. His hugs are amazing and I couldn't be more proud of him.
He's been through so much, he's accomplished even more and every single year he seems to do all the things that we were told he may never be able to do. In 2017 Abram learned to say "mom" again, he learned to ride an adaptive trike, he mastered a rock wall, he's running, learning to do stairs, learning to communicate with an iPad and is making new sounds almost every day. He never ceases to amaze and surprise me and I cannot wait to see all the wonderful things he'll be doing by Christmas next year.
I hope that your Holidays brought you joy and happiness - even if it is simply the sound of your child tearing gift paper or getting a hug from someone you love. For us, all the important things are indeed the little things in life and I am grateful for all of them.
I haven't had the time to update now that we're back in the full-swing of pre-school and therapies with Abram. So much has happened in the last couple of months and I am so proud of my little boy. He always continues to amaze me with how hard he works and how absolutely brilliant he is!
First of all, we had his biannual check-up with Neurology last month. It's crazy for me to even write biannual as before, when things were bad - we were at the Neurology clinic every month or even more often depending on how Abram's medications were worsening his condition.
It has been four years since we started our journey with Epilepsy. Today, my five year old little boy is 2-and-a-half years seizure free and has been free from harmful pharmaceuticals since November of 2016. It has been a miracle in itself watching my child come back to me. Each month the last of the benzodiazepines were weaned from his body, the more I saw a glimmer of my silly and sweet little boy!
Today, Abram is doing awesome in his pre-school class. I am informed he has "a gaggle of girls" who greet him with hugs every day (which explains why he runs into the school building with his aide) and that he is able to sit and participate in story time and play with his peers. He is beginning pre-writing strokes and is actually taking an interest in doing arts-and-crafts - something I've been waiting for this since before he was born!
However, the best part of our year so far is the fact that he is learning how to use an AAC also known as an augmentative and alternative communication device. This means that he is learning how to use an iPad to talk using a program called Proloquo2go. The school allowed me to try out several different programs but I really liked this specific application so my family and I finally bit the bullet and made the large purchase of getting him his own device and the application package to go with it including Pictello where I hope with some help, Abram can make "stories" about his weekends or other events to share with his friends at school!
This whole experience has been a bit of a shocker to me because last year, we had worked with another Speech Language Pathologist who told me that my son had a "cognitive disconnect" and that he couldn't grasp the idea that an illustration or icon of an item represented an actual item or request that needed to be met. Luckily, we met a wonderful new SLP who was able to engage Abram (since day one) and whom had worked on an AAC with him all summer before school started. On one of the first days of using the device, Abram told his aide that he was sick, that he wanted to go home and he wanted to see his Grandma. He did this by pushing specific buttons with icons of the item he wanted to share. Specifically on this day he hit Sick Sick! Drive! Grandma! Home!
Abram was indeed sick and had to be picked up that day. but it shocked me. How did he KNOW what "sick" was? He seriously just clicked through that app and told his aide what he needed and we had no idea he knew what those things were specifically let alone how to tell someone that he felt unwell. It has been and will continue to be a life-saver.
So for Christmas this year, Abram will be getting the gift of communication thanks to the help of my parents purchasing the iPad and all our friends and relatives who have previously helped us raise funds for Abram's medical expenses! These devices and programs aren't cheap but thanks to the people who love and adore our son - we are able to provide him with something that we were told a year ago - would NEVER happen.
Once again folks, never let anyone tell you what your child cannot or will not do - even if they have initials behind their name. In our experience they are always wrong and I can't help but to wonder what would have happened if I had actually believed them? Luckily, I've always been one of those people (much to my parent's chagrin as a child) that despite someone telling me "no" - I would most definitely do it anyway. Thankfully, I applied that attitude to my son's life as well. NO ONE is going to tell me what my son can or cannot do or what he will or will not accomplish. Only Abram knows what Abram can do and I am simply his cheerleader taking him through this journey we call life.
Abram's communication device arrived yesterday and once I get it all set up, I will have Abram send everyone here a little video using his talker! Most people take communication for granted every single day. Having a non-verbal child truly opened up my eyes as to how difficult the world can be to navigate if no one understands what you need or how you feel. Now Abram has this wonderful gift and I know that it will help ease his frustration and self-harming just by simply being able to tell me what he'd like to eat or drink and who he'd like to go visit with.
Life is good for us and we know we are truly lucky to be where we are at in this journey right now. It didn't come without its trials and tribulations but I know for a fact that if it weren't for the great guidance from a Neurologist who believed in Abram - that he'd still be in a fog not doing the things he is able to do today. Instead, he's happy, he's healthy, he is enjoying his new life at school and he remains seizure-free thanks to cannabis and a little miracle bottle of Haleigh's Hope. We couldn't be more grateful this Holiday Season and we send all of you the best wishes of your own little holiday miracles.
Sending you all lots of love and luck.
~Erin & Abe~
A little slideshow of Abram this Fall....
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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