gRowing up

It's been a while since I've posted, but A LOT has happened. Gio finished his last school year strong, learning how to follow instructions in a group setting and being social. We had some concerns there for a while because he was very anti-social, getting weird habits (like not liking blue socks or having to drink from certain cups or needing to sit in a certain chair), and he is sentive to certain sounds. It's not that it had just started happening, it was just that I had started paying more attention to how often it happened and it was becoming more noticeable. He wasn't very good with eye contact either especially when someone was talking directly to him. So I had talked to my cousin, who's son has Autism, and he suggested I get him evaluated. Although it wasn't very extreme, it didn't hurt to talk to his doctor. So I made an appointment immediately. I started doing research on kids with double diagnosis of Down Syndrome and Autism and was very overwhelmed and intimidated. Both of my mom and Gio's dad's mom went with me to the evaluation to give their input. The evaluation was quicker than I expected.The psychologist gave me good news at the end, that although she did have some concerns she didn't feel Roberto was Autistic. She explained that Autism and Down Syndrome have many similar characteristics and that it gets difficult to say a child has both. She said her main reasoning for saying he wasn't Autistic was how affectionate he was towards me. The lack of eye contact was concerning, but she told me that if I worked with him he could eventually learn to make eye contact especially when something is directed to him. His senstivity to sounds and people may not go away, but we can work with him so that he learns to cope with his surroundings. She said he was adorable and from what she saw he was making good progress. The only BUT she really gave me was that because he is mentally around 18-24 months she didn't want to completely eliminate the possibility that he could be Autistic. Autism usually starts showing up around the ages of 2-3 so she wanted to re-visit with us after his 4th birthday and see how he was doing, but she said that as long as we kept up the good work she felt he would stick with the single diagnosis.

That was back in April/May, and since then Gio has done so much better, socially. We visited my family in Mexico and even though he is usually shy with people he doesn't know, he hugged and kissed everyone he met as though he knew them all his life. He did not have one tantrum the two weeks we spent there and he played with everyone. He ate very well and wasn't stressed over his surroundings. I was so worried he would panic about being away from home and his routine, but he was perfect. He had a lot of fun, and even while we were on the rode he behaved very well. He had his moments, but they were not what I expected.

He started school August 19. He is in the special education classroom for preschoolers. The first day he was a little shocked and scared about going. His dad and I dropped him off and he went in without crying. He looked so grown when he walked out of the classroom holding his folder with his name and he said goodbye to his teacher and blew her a kiss. The next day was harder he cried and held on to me when he saw his teacher and cried because he didn't want to go. After that, everyday he will say hello to his teacher, grab her hand, and say bye to me. They teach him sign language so that's awesome! I taught him how to say "I love you" in sign language, and he's learned how to say water, ball, play, book, and car. His teacher has told me that he is very shy in the classroom, but that little by little she is seeing more of his personality and he is stepping out of his shell. He had his first homework assignment, and I was way more excited than him lol. It was to make a little poster about him. Things he likes, his family, his favorite movies. I think his dad and I had more fun than he did.


I'm very excited for what this school year will bring. The sign language makes me feel confident that soon my son will be communicating with me. I want to hear about his day in school. My sister asked me the other day "Does Gio have any friends at school?" I hope he does. That would make me very proud and just overall happy. (:

The hard part about it.

Today is World Down Syndrome Day. It's our second year joining in on raising awareness and stopping the ignorance. Last year my Gio's Godmother was off and she spent most of the day with him. I had a short day so we all went out and ate and hung out when I got off of work. We wore our blue and yellow and they wore their crazy socks. I work at a bank and my dress code didnt allow me to sport crazy socks during my shift. I didn't really spread the word last year. It had only been a month since we received Gio's diagnosis and it was all still new to me. Even today it gets hard to think about what I should respond if i decided to show off my crazy socks and someone asked me about it. I would say it was on behalf of my son who has Down Syndrome and then they would look at me with a pitiful expression on their face and say how sorry they were and maybe ask questions about him. I'm not too reserved when it comes to needing to tell people about my son, but, although I've tried to advocate awareness, I haven't necessarily been a spokesperson for Down Syndrome. 

It has still been very hard to think of myself as part of that group. I can talk about my son and his delays and I can go on and tell everyone about his diagnosis and how I am relieved we finally have an answer. I can freely say my son has Down Syndrome without being ashamed or embarrassed by it. But I have not yet fully grasped the idea of being a part of the Down Syndrome community. Not that it's a bad thing or anything I just haven't processed the fact that that's where we are a part of now. Most people have the luxury of finding out either during pregnancy or at birth. Yes, I said LUXURY. I didn't get that. I spent my son's first year and a half thinking he was "normal" just a little lazy. I blamed myself for not pushing him enough. I took for granted that my sister had reached her milestones mostly on her own and expected the same for my son because, well, everything was fine. He had weird habits and was a little delayed, but there was an excuse for everything. He started walking late slowly being a little more independent, but something was still off. At the age of 2 and 3 months was when we I found out I was a mother to a child with Down Syndrome. Imagine. Almost 3 years including pregnancy and having no idea. I agree that everything happens for a reason and I agree that his disability didn't change who he is, but it did change a lot of other things. It changed how we do <i>certain</i> things no matter how much we try to say it doesn't. It does. It changed what I felt about myself, it changed the idea of what i thought was my son's future, it changed even the way we care for him. I can sit here and pretend everything is normal, but it's not. It doesn't mean he is incapable at all, it means no matter how much we want to push aside the idea of a disability it will always be there. It does not define him, but he HAS it. It is still very fresh and i play it over and over again. I didn't get to know from the beginning. I didn't get that LUXURY. And, although, I have gotten more comfortable with this whole situation, I still need time to grasp it. I will always do what I can to help my child and to teach those around is despite my denial. 

I love being a mom more than anything I have ever been. I love knowing that whatever I put into being a mom is exactly what I'm getting back. It is the best investment of my time, by far. Gio is so full of life and hilarious and his charisma is so enlightening. Everyone who meets him loves him even when he's in a bad mood. The Down Syndrome has just given us a detour in our life journey. I know most of the time I write it sounds depressing, but I pinky promise I'm very happy being a mother. The grief of losing control over what I thought my child's future would look like is a little heartbreaking at times, but he is a perfectly loved child. It still blows my mind to think he is already 3 years. These have been the most challenging and amazing three years of my life. And i honestly wouldn't have been able to get through anything without Gio. He is my rock and my strength. To think such a tiny person is capable of doing so much to make me grow is incomprehensible at times. He can't even speak a full sentence, but he has me stepping out of my comfort zone wearing weird socks and advocating equality among those with Down syndrome and those who don't have it.

The more I think about what we do to raise awareness the more it makes sense. Crazy, mismatched socks can be uncomfortable for some people to wear and even a little weird for you to see someone wearing them. It isn't something "normal." You look at someone with mismatched socks and ask them if they had trouble getting dressed or if they don't own an actual pair because well a "normal" person wouldn't do that on purpose. Some of the reactions you might get are pretty similar to the looks people with Down Syndrome get. Why do they look the way they do? Or talk so different? A "normal" person doesn't do that. Yes two mismatched socks keep your feet warm they don't magically stop being socks just because they don't match or look a little diefferent. Just like people who don't look "normal" still have feelings, still have minds of their own, still do what they supposed to do. Just because it might make you uncomfortable doesn't mean they aren't doing what they are meant to do. I don't believe in the saying "God gives special kids to special people." I am no where near worthy of being Gio's mother. I think special kids are more like angels meant to teach you what being a real person really means. I believe we as parents are the lucky ones, to be blessed with the opportunity to see the world with a more pure and real perspective. All parents learn from their children, but a parent who truly learns how to make those around their child with a disability, for lack of a better term, better people; that is the parent who has taken their seed and nurtured it into a beautiful, strong tree. Today, and every March 21st to come, I hope you join in with us in raising awareness. To those who want to be a part of the world, not physically, but emotionally. They want to be seen for who they are, not they're Down Syndrome. Wearing the colors blue and yellow and crazy socks isn't even the hardest part about it, but it makes a huge difference. 

http://youtu.be/Ju-q4OnBtNU

Acceptance

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!

3:21

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. 

1000 MILES OF LUCA

I just came across this video while I was bored at work lol (:

It is ABSOLUTELY Beautiful. I love it. It describes, I believe, the situation exactly how it is. I felt his pain and his joy all together. I think it still is a little harder for me because We found out only a year ago. Actually it will almost be exactly a year ago in February. Anyways, watch this video. I know I'm about to post it EVERYWHERE as soon as I find a direct link to it. Read the info on it too, its just precious (:

By the way, the actual video is the one at the bottom of the article. It's about 9 or so minutes long.

1000 Miles of Luca