Tuesday, August 14, 2012

And We're Off!

Fragile X Syndrome. If you look it up, it can sound pretty scary. Especially if you are told your own child has it. One of the things that stood out the most to us when we first started learning about it, was that people with Fragile X may be non-verbal. Or have very limited vocabulary. We were reading this when Logan was 2 years old and didn't have any words yet. Well, I actually take that back. He had been saying "da-da" when he was about 18 months old, but then seemed to have lost that ability by the time he was 2. 

This became my priority in life, to make sure Logan wasn't going to be non-verbal. I started taking him to speech therapy every week, and hippotherapy, and continuing that therapy at home as much as possible. When I looked at this young, blue-eyed, curly haired, adorable little boy, I couldn't imagine him going through life never being able to say a word. Not being able to simply say "cold" if he needs a blanket, or "hungry", or "sad". We were determined to get him talking. 

We tried using PECS, he was not interested. At all. PECS is the picture exchange communication system. We then moved on to sign language. He seemed to show a little interest in what our hands were doing as we signed "more" for example. But he wouldn't copy us. He wouldn't even try. He then started understanding that when we move our hands, he gets something. So then he allowed us to form his hands to sign "more". This went on for almost a full year. 

This is where we were at when Logan started preschool. He had outgrown the Birth-3 program at the local therapy center, so for him to continue receiving the most therapy, he would go to preschool at an elementary school. When we were going through his education plan with his teachers, they asked how he communicates. That's a good question! I told them that he hadn't shown any interest in anything we'd tried so far. They decided to try the PECS system again. Worth a shot. Well, once he saw the other students getting food and toys they wanted by signing with their hands or using their words, he was not about to be left behind. His first week of preschool, he signed "more" when he had finished his lunch at home with me. I was so excited!! I called everyone I know, including his teacher. He hadn't done it at school yet, we think he wanted to practice at home first where he was more comfortable. Well when he saw my reaction, he knew he'd done something great. That was where we took off. 

Fast forward a few months, Logan was signing More, All Done, Bye Bye, Eat, and Shoes. He was so proud of himself, signing whenever he could. We were thinking this is okay, if Logan is non-verbal but can use sign language, that's something we can deal with. He can still express what he needs/wants. That's pretty much the most important thing. 

Then, Logan started using Gramma and Grampa's iPad. 

There are numerous games that have animals making sounds. Logan started to recognize these animals, and their individual sounds. We got Logan an iPad for home as well, so he was able to play iPad any time he wanted. One day, he pointed to the cow and said "Mooooo". It was the cutest thing I'd ever seen, and the best sound in the world. He then saw a cow on tv, and said "Moooo". Pointed to a cow in a book, and same thing, he gave a big long "Moooooo". I counted this as Logan's first word, and we were all in tears we were so excited and proud. After that, Logan took off. He copies animal sounds, he signs and says words at the same time, he is copying words right after we say them, he's doing great. As of today, Logan can say Hi, Moo, Baa, Hi Dad, Mommy, Melanie, Baby, Bubble, Bob (for Spongebob), Uncle John, Yes, All Done, Yay, More, Bye Bye, Vroom (whenever he sees a car, particulary Grampa's mustang LOL!) and probably even more than I have even heard yet. When he doesn't understand how to say a word, he hums the correct number of syllables. Whatever works though, I say! He still gets his point across. We are so so so proud of our little talker. I was listening to Logan play and talk today, and remembered when we couldn't get him to even point to a picture of what he wanted. He has come so far, and every word is now that much more special, coming from him. He is no longer non-verbal, and it makes me so proud, knowing how hard he works to get those special little words out. He's our amazing little Fragile X'er, and he definitely makes every day special.


  1. I love your blog, it's inspirational. You brought tears to my eyes! You are such a great mommy. Can't wait to hear about all the more progress to come! :)

  2. Thanks so much for reading it, Tiff! It means a lot that you took the time to read it! :)


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