Friday, December 11, 2015

Special children are sent to special parents?

Usually the first "comforting" thing I hear after I tell someone my son has Down Syndrome is, "Well, God only send special children to special parents."


So let's say my son didn't have a disability, would that make him any less special? Let's say I went up to any random parent and said, "you know God gave me this child because I'M a special parent," this would probably cause this other parent to think I am arrogant. But why? Because by looking at Gio you can't really tell he has Down Syndrome. So without explaining to someone that my son has a disability they don't know. Once I explain to someone Gio's situation they might agree that I am indeed a "special parent." However, I disagree 110%. I am no better a mom than any other mom I know, including my own. I make many mistakes, but like ANY other mom, I do what I believe is best for my child. It's honestly a little bothersome that people want me to feel special. What is so special about not being able to speak to my child? What's so special about knowing my son isn't "where he's suppose to be?" If someone could tell me what is so special about that maybe I would understand. I've been on both sides of this boat. My older cousin's son has Autism. He is 4 years older than Gio and when I saw all the things him and his wife went through when their son was born and as he grew up, I didn't for one second think to say "special kids are given to special parents." I tried to understand what they were going through and I did my best to treat my nephew equally as the other kids. He didn't get "special" treatment just because he is different. My cousin always respected me for that. So when I found out about my son's condition and people wanted to treat my son differently and be more lenient on him because they think he doesn't understand, my cousin was there to tell me that he understood and that I needed to let them know they can't do that. We talked about how people think they do us favors because they think they are being sympathetic to our situations, but they're not. You aren't doing us any favors by letting our children step all over you because you're scared to be too hard on them. Our son's need as much discipline and need to know there are boundaries, just like any other child. They need to know they cannot get away with whatever just because you want to call them "special." Our children are actually VERY smart and they will learn (mine has) to manipulate situations and people who think they deserve it because in a way you feel sorry for them. Once you look passed their disability, you'll see they are just like any other kid who will find a way to get their way. I don't want my son to grow up thinking he is entitled to certain treatment just because people don't think he is capable of understanding, or because they think he is "special."

I don't agree that because I face challenging circumstances in raising my child I am entitled to being considered "special." I don't understand why some people tell me, "I don't know how you do it" or "you're such a great mom" or "I don't know what I would do if I was you." You know what you would do? The same exact thing I'm doing because any parent would do anything for their child's well-being. You would take them to therapies and doctor's appointments and you would buy special vitamins or extra learning devices for them. You would make sure that at the end of the day that child knows they are loved and supported. Just like any parent of any child would. Doing these things doesn't make me an extra great mom. Growing up, I was always in the advanced classes. I was at the top of my class for the most part. I graduated with a 4.3 GPA; 8th in my class. I remember one time one of my teachers told my mom to stop pressuring me so much. I was a straight A student and deserved to slack off a little. My mom disagreed. She didn't believe I should do any less than what I am capable of just because I was ahead. Teachers had me labeled as "Gifted and Talented" and had me in that program. Slacking off would have created bad habits in me and my mom knew that. My mom always told me not to let my ego get too big just because teachers thought I was a good student. My mom made sure I stayed discipline. This is what I want to instill in my child. I want him to ignore what anyone around him says because I know what he is capable of. Gio is so smart and understands everything around him. I won't allow for people to make him believe he is "special" because he has a disability. Gio is special because he is Gio.

Don't get me wrong. I appreciate people trying to be nice and sympathize with the situation. But because of this misunderstanding, I am explaining the ignorance in this statement people so commonly use to make us "special" parents feel better. Maybe if this was something you said to EVERY parent it wouldn't feel so patronizing. I believe every parent who is willing to move mountains for their children is special. You don't have to pity a parent with a child with a disability. I know it looks hard, but it's what we know. This is normal for us. Of course there are very hard days and we ask "why" a lot. We wonder what will be of our kids as they get older. We wonder if we are making the right choices in accepting certain therapies or not. We look for any type of hope of a solution to our child's problem. Even on the worst days where everything goes wrong at the end of the day, we thank God that we were blessed with such a beautiful child that teaches us more about ourselves than we knew possible. The strength and wisdom we end up gaining can only be thanks to our children. Just like any parent who loves their child unconditionally, we hope that tomorrow will be better for them and we hope that they will earn the title of being "special" by what they accomplish in life not because of their disability.

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that he is exactly the person he is supposed to be and that, if you’re lucky, he just might be the teacher who turns you into the person you are supposed to be. – Joan Ryan”

Friday, November 27, 2015

"I am a slow walker, but I never walk back" - Abe Lincoln

Gio has been making so much progress lately. I like to think of it as a little developmental "growth spurt." He's trying to talk more and he is a lot more social. We've had a couple of family parties and instead of locking himself up in a room, he comes out and tries to mingle with our relatives. He still isolates himself a little, but he is more willing to be a part of the crowd versus shutting everyone out. He now tries to say ojos, nariz, boca, orejas while pointing to the corresponding body part. He also says rojo, verde, Azul, and zapatos. A long with words he already knew like all done and mas. Gio doesn't wait to be prompted as much anymore. During his speech therapies, he gets to use a device, which we are waiting on our own to use at home, and he can express what he is feeling when asked. He is a lot more loving with people he may not see everyday where as before he didn't pay them any mind.

Gio has also learned to ask for things. He sees commercials on TV or movies of toys or other movies and he points and says "this?" That's his way of saying he wants it and can he have it. One morning, my cousin Ana and I were sitting at the kitchen table when Gio comes up to me with an Ad booklet from Walmart. It had all the Black Friday sales, and Gio was trying to choose what he wanted. So he turns to the page with the toys and he points to a Hot Wheels race car set that cost $89.99 and said "this?" My cousin and I laughed and I said in Spanish "No! You're crazy that's too expensive." I didn't think he would really put two and two together, but he did. So he turned to another page with a smaller race care set that only cost $39.99 and said "this?" My cousin and I were both shocked, but laughed at how he had a back up plan. I couldn't say no to his witty comeback so I said, "Si mi amor. I'll get you that one." He sighed and said, "okay," put the booklet on the table, pushed it towards me so to say "don't forget mom," and walked away. We both laughed and were just amazed at how serious he was and how understanding he was of the situation.

A couple days ago, I told Gio his dad was going to pick him up in a little while and if that was okay and he said "okay." He ran to our room and I assumed he forgot because he didn't come out for a while. Eventually, he came up to me and pointed to his feet and told me "zapatos" (shoes). He wanted me to put his shoes on so he could be ready for his dad to pick him up. Things like this show me how much he is maturing and progressing. He asked for a "naranja" at my moms this morning and when I couldn't figure out what he was trying to say he ran up to the fruit basket and pointed saying "this." Gio uses "this" for a lot of things, but recently he has been trying to say more words. I also recently noticed that if a movie isn't in Spanish he will only watch the first 10 min or so of it, unless it's a favorite like Mater's Tales. He also loves watching silent cartoons, for example Tom & Jerry. I'm assuming it's because he can relate. His teachers have been very good at learning Spanish words in order to work with Gio at school because I did explain that that is what he seems to understand the most.

Gio is so independent and clever. He never fails to make me laugh. I'm enjoying his little growth spurt so much! Everyone around us is too. They comment on the things he is doing and the changes they've noticed in him. Our family especially enjoys how social he is becoming. I am excited to see what the next few months will bring. (:

Thursday, November 12, 2015


It's been a very busy year for us. There have been many changes to our lives which is why I hadn't updated on here. I recently came to the conclusion that I have been in denial of Gio's condition, which is why I stopped writing. At first, I thought writing would help me cope. I thought I was advocating for my son and his rights and I thought I was bringing awareness to an issue not many are aware of. I did these things because I thought I was in acceptance of my son's condition. I was wrong.

Of course I support my son and I will never stop being his voice. I thought that I had come to accept that my son's life would not be easy, but who's is? I thought that I was doing things because I had accepted the challenge that was given to us, but that was not the case at all. I believe I did the things I did because as a mother it is your instinct to fight for your child. You fight for their happiness, their health, and their future. When they told me Gio had Down Syndrome, they told me he needed therapies, he needed to be seen at the Down Syndrome clinic twice a year, he needed shoes with insoles and he needed to have a diet particularly high in fatty foods. I did these things not because I had accepted the news and was ok with it; I did it because Gio is my son and it was what needed to be done for his own good. It's like when your child is getting a cold. You see the symptoms and you can see something is wrong. You take them to the doctor and the doctor prescribes medicines. With the busy lifestyles the majority of us lead we don't stop and think "My child has a virus I should stop what I'm doing for the next two days and give my full attention to him/her." Especially if you have more kids. What we do is we give them the medicine and wait for it to go away. Sure we stop for an hour or so to baby our sick child and tend to their needs, but we don't fully process the fact that our child is sick. Perhaps it's the fact that a cold is so common, or perhaps it's because we refuse to accept that for a moment our child has become weak. We want to believe our children are invincible, as well as ourselves. We don't usually take the time to really process events that could cause some sort of interruption in our busy lives. That is how I felt. I did the things I needed to do not because I saw my child with a disability, but because I was told that was what NEEDED to be done.

Now with this same obedience, I will do whatever it takes to make my child's life "easier" or more "normal," for lack of a better term. I've mentioned before that Gio's biggest struggle is with communication. He only speaks if he is prompted and he still needs to learn that he can ask for thing without crying. He says basic words and is now learning body parts and colors. This has been very difficult to accept. I don't spend too much time with other kids his age so when he makes progress I get excited and think "Gio's not that bad. He's going to talk. It's just going to take some time." This was my denial.

I recently started a new job where I only work 3 days a week. This allowed me to truly open my eyes to what life really is like for not only him, but me as his mother. My biggest fear is for him not to be able to communicate something so simple, such as "I'm hungry." I have been fortunate enough to keep him in a little bubble of protection from the "real" world. He is always accompanied by someone who is able to figure out his needs. The problem is he is getting older and I will not be able to keep him in that bubble forever. This is when it hit me. MY son HAS a disability. My son WILL face adversities that are not typical for a child. With this realization, also came the realization that I have not been able to grieve the situation. Some might think "Why would you grieve? You have your child, it could be worse." Yeah, it can, but it's not. This is what it is and this is a difficult situation. I've learned that your child doesn't have to be physically gone for you to have something to grieve about. In the poem "Welcome to Holland," the author, Emily Perl Kingsley, perfectly describes the loss a parent feels when you find out your child has a disability. I've read it over and over and over again. But I recently read it a few days ago and it had a whole new meaning to me because I have finally accepted my loss. I have also learned to see what I have gained in this situation. The loss isn't something that needs a funeral or anything like that. It is a loss you deal with on your own. It is to accept that it is not your fault. It is to see that despite all the plans you had for yourself and your child, the universe has a way of showing you your plans are meaningless. This realization has also helped me see the depth of Gio's need for me to be in a good state of mind always. One can say, every child needs you to be happy, but a child who cannot talk needs that so much more. They need so much more patience and they need you to WANT to learn them. It is truly a bond that words cannot express, literally. People have complimented how well I can read Gio's emotions and needs, but this ties back to my fear. I don't want Gio to become too dependent on me being his interpreter to the world what he needs and how he feels that he doesn't motivate himself to learn some form of communication. Luckily, his therapist has suggested a talker device. This device will talk for him in a sense. But the concept of holding a conversation past just expressing his basic needs, is something Gio still needs to learn. According to his diagnosis, however, Gio has a "permanent and severe expressive speech impairment." This is not saying that Gio will never be able to verbally communicate, but rather it means that he will not be able to hold a conversation where he can express emotions and opinions on particular topics. His speech will be to express his needs more than anything else. Reading that diagnosis broke my heart. I want nothing more than for Gio to come home from school and not only tell me how it went, but to tell me how he felt. You don't realize how much something means until it is not available to you. I use to get so annoyed by my little sister's stories about how some girl didn't let anyone else play tether ball during recess because she thought she was the best. But now that I've been told Gio isn't going to be able to tell me those stories makes me appreciate them so much.

A few months back, my cousin (who's son has Autism) and I were at a friends house watching the ESPYs, and they had given an award to football player, Devon Still of the Cincinnati Bengals because his daughter had been diagnosed with cancer at a young age and he started a foundation to help children with cancer. Our friend asked my cousin and I if we had the option to change what our kids have in exchange for cancer would we do it. My cousin didn't hesitate in saying YES. I was a little shocked. How could you trade a disability for a terminal disease? My argument was how could you say you rather see your child go through chemo and being hooked up to machines giving them drugs and dealing with surgeries rather than what we dealt with. Sure we took our kids to therapies, and sure our kids have to stick to certain routines, but in my mind at that time it wasn't THAT bad, there wasn't a possibility that they would die from it. My cousin immediately expressed that if there was a cure for his son's condition he would take it in a heartbeat. That was it. The pure possibility of being cured was enough because as far as our boys are concerned, their condition is permanent. There is no chemo or medication that could take away Gio's extra chromosome. At that moment I didn't agree. Of course it was all hypothetical, but up until now I didn't realize my cousins point. There is no doctor in the world that will tell me "Here is a possible solution to cure your son and help him lead a healthy, normal life." Nothing is guaranteed, but I've come to see that having the option of a cure is one hell of an option regardless of the situation.

If someone came up to me and said, "This will help diminish your son's condition or just help him talk" believe that there would be little to no hesitation on my part to accept their solution. After reading the diagnosis that Gio now carries, I pray and hope that somewhere there is our chance not necessarily for a cure, but just a chance at one day being able to take a walk with my son in the park and have a conversation about how beautiful nature can be and how big the world is. To sit outside on a summer night and have him ask me why there are so many stars and why are they so bright and why does the moon hide sometimes and why life is so mysteriously beautiful. I hated the "why" phase when my sister was younger. She wanted all the answers to fill her curiosity and I would get frustrated because I didn't have them. Now, I crave those "why" questions, and one day that craving will be fulfilled because one thing I will continue to be in denial of is that my son will not hold a conversation. Gio WILL talk. It'll take A LOT of work, but I was raised to prove people wrong.

Friday, February 13, 2015

Recycling the things you learn.

I remember when I was in fifth grade my teacher, Mrs. Harvey, told us that she was going to teach us sign language. We all thought it was weird since no one in our grade was deaf or even used sign language. Mrs. Harvey explained that a few years back she had a student who was deaf and taught Mrs. Harvey and the rest of the students in the class sign language so that she could communicate with them. So she taught us the alphabet; she made us say please and thank you; we learned how to say bathroom; and by the end of the year we were expected to sign the pledge of allegiance with out saying it. I always thought it was pretty cool, but I couldn't help but wonder "When will I ever use this?" Why do I need to learn to communicate with my hands when everyone around me can speak and hear fine. Of course, Mrs. Harvey realized that some of us didn't understand why she was forcing us to learn such an uncommon skill, especially in our small town where everyone knew everyone, but she reminded us that we never know when we could use this skill. She explained that just like some of our parents needed us as translators because they don't speak English, one day we might run into a situation where we want to communicate with someone who can't talk. I'm not sure about any of her other students, but she couldn't have been more right with me.

Gio is four years old and still has a very limited vocabulary. He's learned a to say a couple more words like "no" (which he uses frequently lol) and Cruz (my brother's name). He's been doing more syllables than words. He seems to hum the syllables of whatever word I say. He tries to mouth mama and papa. He signs milk and juice very well. He says more without the sign and when hes hungry he will sign "eat" without being prompted. So he has made some progress. Slowly, but surely we will get there. There are days that go by and I don't notice that he doesn't tell me what went on at school that day, or that he didn't eat because he was angry. I don't notice that something is bothering him, or even that someone might have made him mad that day. I don't notice that he doesn't explain to me what he sees out the car window and instead of going to his great-grandpa's house he wanted me to turn right so to go to his grandma's house instead. There are days I don't try to read his mind and we both kind of just go with the flow. He doesn't stress out because he can't express himself to me and I don't push it. But then there are weeks that I tell him every morning to have a good day at school and to be good and don't forget to share with his friends when they ask. There are times I ask him when I pick him up how his day was and by his expression I can kind of guess it was an extra good day or just a regular day. Most of the time I'm watching him to guess what he is looking at and imagine what he is thinking, what he is feeling. Most days are pretty good and I can guess at 90% of what he wants or needs. I enjoy these days the most. I dread the days where he's just as frustrated or more than me because he feels something or needs something and cannot tell me what it is. He is very impatient and sometimes his days exhaust so much so that he rather be left alone. I want nothing more than to take him out for lunch and have him tell me what he's thinking. I've had a few people ask me why I let him watch so much cartoons. Why I allow him to play on his tablet so much. To answer this, I allow it because it is when he is most at peace. he is at peace with his movies and cartoons because he can imitate them over and over. He isn't frustrated by not being able to explain himself because he just reflects what he sees. If the characters are playing he plays, if they are singing he pretends to sing, if they are dancing he dances, the characters are happy so he is happy. To me this is the way he socializes because there is no expectation of him needing to respond to someone. He can't tell another child what he wants to play or how they made him feel so he isolates himself. As much as I know movies aren't what is best for him to be doing, that is the only time my son has that he feels social. I will continue to push him to communicate with others, but I will not take that away from him. Recently he asks for someone to sit and watch the show with him. He wants you to imitate it with him. That is him asking to play. I love that he asks for someone to be with him. Especially after the rough days where he isolates himself. Gio is like any other little boy who just wants to have fun. If that means I watch the first 5 minutes of The Croods over and over for an hour then so be it.

My dad had also taught us a sign when we were younger. He taught us "I love you" in sign language. When he first did it I said "No, that is for rock'n'roll." He laughed and said showed me the sign for "rock'n'roll" and he only had his index finger and pinky up. When he signed I love you he had his thumb up, as well. My brother and I nodded in amazement that my dad knew how to say "I love you." I remember even asking Mrs. Harvey if that was really how you say "I love you" and she smiled and said, yes. So after that, whenever we would see eachother from far we would sign "I love you." When my dad would drop me off at school he would sign and I would reply. When we would go to Mexico and we visited my grandma's grave my dad would do the sign as we left, and anytime we passed by the cemetery we would all do the sign. As I got older, we wouldn't sign to eachother as much. My dad would do it at us once in a while and we would just laugh.

Although Gio doesn't speak, he tries to mouth "I love you." When I'm dropping him off at school I'll tell him "I love you papi" and he will just move his mouth as though trying to say it back. I taught him to sign "I love you" just as my dad had taught me. He does the sign very well and will do it if someone signs to him or says "I love you." One night, we were laying in bed ready to fall asleep. He seemed to have been talking to himself saying "bravo." He usually says this when he's done something right or after signing "I love you." When he signs "I love you" his hand and your hand have to touch before he says "bravo." Now he usually holds my hand when he is falling asleep, so I didn't think anything when he was search for my hand. But when he finally grabbed it he would say "bravo." So I turned to see what he was doing, and I saw his hand making the "I love you" sign. He had been trying to sign to me before falling asleep, but needed our hands to touch before falling asleep. It was so beautiful to know he finally grasped the meaning of the sign. I made the sign as well and our hands met right before he finished by saying "bravo." He then leaned over to kiss me and fell asleep hugging my arm. There are very tough days, but moments like those are what keeps me from giving up.