I photographed Isabel for her Maternity sessions a few years back and I just recently heard her birth story. I asked her to share it so we can raise awareness on this topic. This world can be an ugly place but the more we understand, the more we can help each other. You are not alone!
"I don’t really know how to start this but I know it’s something that I need to do to spread awareness on this issue. My son Anthony was diagnosed back in March with a learning disability called Fragile X Syndrome. It's similar to Autism but not exactly. We were told that you can have autism and Fragile X Syndrome at the same time but his doctor wants to wait 6 more moths for an exact diagnosis. Regardless, my son will need me for the rest of his life.
We had some complications at birth, he spent a week in the NICU on oxygen due to him not breathing but as he started to grow, I noticed that he wasn’t hitting the necessary milestones a baby should have. He hated being on his tummy, sitting up and he never rolled over or crawled. My family and close friends, even doctors kept telling me he would reach his milestones on his own time and at his own pace, but something in my gut kept telling me that something is wrong.
When he was about 3 months old, I took him to his pediatrician who referred us to ECI which offered us physical and occupational therapy. Because Anthony never rolled or basically never moved from a laying position, the back of his head became flat and I knew I needed to take action. We got him a helmet to correct and help shape his skull and he kept it on for 8 months until his second birthday. After a while I knew that it was more than him “just taking his time” and the doctor finally referred us to a genetics specialist for blood work. After 7 long months of waiting, the results came back. My son had a rare learning disability called fragile X syndrome.
My son walked when he was 2 years old and until this day he has never babbled, and has never spoken a word. He is in and out of hospitals and they are constantly running tests on him. The doctors told me that he may never speak but not to get discouraged.. He turned three just a few days ago.
I'd like to give you an idea of what it’s like to have a child with a learning disability who is non verbal. My son screams out of excitement, out of frustration, because he’s hungry, because he needs help or just because that’s the only way he can communicate. My everyday life consists of a lot of screaming and crying. Everywhere I go I get dirty looks from adults and whispers. One time I stormed out of the restaurant without even eating (at the time I didn’t know about my sons disability). I got so overwhelmed at the thought that people were being so ugly to a child and myself.
My son is very socially awkward, doesn’t understand social cues, doesn’t understand the concept of toys, he still puts anything and everything in his mouth, doesn’t engage in playing with other children, he simply just enjoys watching other kids have fun. One day, we were at McDonald’s and Anthony got close to a family who was eating and because of his disability, he just stood there staring at them. The lady tells her son “Look son, he’s staring at us like he’s never been fed before”. I got so angry I grabbed Anthony and we left. I choose not to scream or get defensive with other adults in front of my boy because of his sensitivity. I just choose to be mature and walk away.
Children often tell him or ask me “Why does he scream so much?" Or they say “go away” and push him or “Shut up!” I understand that they are just children but parents usually don’t ever say anything about it. I cry out of anger and think to myself: if my son had AUTISM stamped on his forehead or if he had facial features that made him look different, I know that parents would be so much more nicer to him or they would tell their children to be kind.
This world is a very cruel place but even with his disability, my son is very smart. He sweet, funny, goofy! He loves to share and his favorite thing to do is listen to music and dance. He is currently going to Monkey mouths for occupational, physical and speech therapy 4 times a week and has progressed a lot! He has learned 7 signs in sign language. I tell my baby every night before we go to bed “I love you Mijo, you're a very smart baby! Don’t ever let anyone tell you otherwise because you're different”.
I think we need to learn to be kind again to one another! You don't know the struggles of the people around you. Rather than giving ugly looks, give a smile and be encouraging!
If you have a child with a disability, remind yourself every day that GOD sent YOU that baby! He didn't send it to your neighbor or your sister or your friend. He chose YOU for a reason that’s much bigger than you’ll ever understand at the moment! I accepted that and I try my best to love, protect and guide him as much as I possibly can, as long as my heart is beating!"
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