My mom wrote this a while ago, she wanted me to share it and I just kept forgetting lol.
Today, as I sit in class learning about the different impairments that affect children's literacy, I vaguely hear the work Down Syndrome. I withdraw because I'm still in denial! As Im physically present and barely hear what they're saying, I have all these images of Baby Gio: his birth, hugs, kisses, struggles, and so forth. I come to realize how unique he is. I come back to class and I continue to hear stereo types of children with Down syndrome; I'm the shy type of person who only shares if I have to or is asked to, but this time I could picture my baby to be reminded he didn't fit that criteria. I stood up before the special education teacher to tell her that not all children with Down syndrome are the same. She said children with Down syndrome are born to mothers who are in their late thirties to early forties. I couldn't help it, I stood to up and said, "I disagree!" Every body looked at me in shock. I proceeded to explain that my daughter at the age of 19 gave birth to a child with Down syndrome, but not the typical Down syndrome....mosaic Down syndrome. I continued to explain what Mosaic Down Syndrome is. I'm typically shaking and will usually lose my voice when talking in front of people, but not this time, Gio was in my head the whole time giving me the strength I needed. I am proud to have had the courage to share his story and give him a voice letting people know there is no stereotype for children with Down Syndrome. I shared his story without crying; I think I'm beginning to accept that he is and will always be unique, but, you know, who isn't? We all are in different ways.
I know Gio and Karla will be faced with many challenges in their lives, but I also know that he's extremely charismatic and has the intelligence to get them through those challenges. My baby is very smart, he only has Down syndrome and that will not keep him from achieving his goals. He is stubborn like his mother. I love you baby Gio from the time I found out you existed and you have given me the strength to fight and face challenges I'm not use to. You are and will always be first, then your disability. There I said it.....his disability and although it breaks my heart, I know it doesn't change what I feel for him! I am proud to say I'm your grandma!
Thursday, March 6, 2014
It's been a while since I've updated this and that's mainly because we've been pretty busy. Gio started school in February and that was very stressful and exciting. Would he understand the teachers? Would he let the other kids push him around? Would he have a panic attack about something and the teachers won't be able to calm him down? The night before all these things kept running through my head, but I knew that if I pushed this back any longer it would only hurt him. His first day of school was February 3rd. I got him all dressed up with his backpack and his lunch box. When I parked he saw kids playing on the playground and he got really happy. He was excited when we were walking throught the school halls, he kept saying "woooow" as he stared at all the artwork on the walls. It was a little heartbreaking when we were in the classroom and he said Bye to me. The teacher didn't want me to stay the whole time, but he was fine so I figured it was best, anyways. My dad came and we waited for his first hour and a half of school to be over. When we got to the door, we could hear him playing and having fun. My dad was watching him through the window and said he was about to get mad because the teacher wouldn't let him go play with a toy across the room. Right then, we heard him screaming and crying. Luckily the bell rang and class was over. He saw me and ran to me, his teacher explained what happened and I just laughed it off, he's not use to it yet. She agreed and said with time he'll get better and that he was great throughout the rest of the class.
Gio's class is called beginnings and is only and hour and a half on Mondays. This is easy and difficult at the same time. It's easy because it's a small way to transition him into a classroom. But it's difficult because the classes are so far apart that I don't think he understands that it isn't just a one time thing. Especially when they have days off like President's Day, he had a hard time going back. It's a special program for kids who couldn't quite make it into the fulltime Specials classroom. There are only two other little boys along with Gio. It isn't a "normal" preschool, but I was fine with that. I did agree that Gio needed to keep seeing a speech therapist, but after 3 they prefer to put them in a classroom so getting him to therapies would be more time consuming, being that i work full time makes that a little harder. Plus school is going to happen one day regardless so why not give him a head start? The program for once a week felt right. Next year Gio will be in school full time Monday thru Friday for 3 hours! I'm anxious and nervous for that too. It will still be a Specials program where a speech, occupational, and physical therapist will meet with the kids weekly. There is about 8 or 9 kids and 3 teachers apart from the therapists. He will also get I think 30 minutes a week of being in a "regular" classroom, where there are 20 kids and 2 teachers. That part is what is going to keep me worried. Once we cross that bridge though, it'll only prove how strong and independent my baby is.
Gio hasn't really expanded his vocab anymore. Except he learned to call his Godmother "uhna" for Tana and he calls my sister "meh" for Karyme. He loves his aunties haha. Sometimes he calls his uncle Ivan, van. He's quite the character. He loves to make people laugh and he can almost eat a whole bag of popcorn by himself, thanks to me 😄. He learned how to jump with both feet! Thanks to Goofy from Mickey Mouse Clubhouse haha. He can also take off his shirts and jackets and he loves baths. Everyone who knows him loves him. He's so innocent, but smart. He catches on quickly and imitates everything. He's been to the playground of few times and he can climb up by himself and goes down the little slides. He use to be scared of the inside playground at McDonald's and now i can't get him to leave haha. He's matured so much it's amazing to see how far he has come. I wonder how he would be if we hadn't found a diagnosis for him. I'm so thankful for the doctors at Children's who helped us. The education the doctors have on the type of Down Syndrome he has is limited because it is so rare, but the fact that they didn't just dismiss him as a delayed learner means a lot. Even though, we don't like to introduce him as a little boy with Down Syndrome or even call attention to the fact that he has it doesn't mean we don't acknowledge it. We are very aware of his delays, but we celebrate his milestones even if he accomplished them a little late.
March 21 is World Down Syndrome day. My son has extra chromosomes in 22% of his body. We don't know where we only know to be cautious and that whatever he needs will be done. Just because it isn't 100% doesn't mean we can push it to the side as if it's nothing. I want to raise awareness for all those with disabilities because even though it doesn't define who they are as people it defines their struggles and how people perceive them. If there were more awareness we wouldn't be so scared or awkward about these situations. My son was lucky, for a lack of a better term, that his physical characteristics don't make him look like he has Down Syndrome, but whenever people see someone like that they pity them and their families and that's not the case. Stay educated and be aware of those around you. We all have flaws and we all have struggles. It's not what happens to us that breaks is down, it's how we handle it.
On March 21 for World Down Syndrome day the way to raise awareness is to wear crazy socks. Mismatch them, get weird patterns, or wear 3 socks instead of two for the third chromosome. Whatever way you want to do it. It's something fun and silly and it'll get people's attention and you can explain it to them when they ask what's up with the crazy socks and that's how it starts. Take pics and spread the word. It's a simple act that'll make a huge difference.