This girl!

This girl!

Friday, April 28, 2017

The need to fit in.

Why do we seek to fit in somewhere, anywhere? Maybe it's human nature to want to identify ourselves with someone, share the same interests and even the same struggles with a group of people so we don't feel so alone. This is especially true when you have a special needs kid, suddenly the number of people that share something with you gets smaller and harder to find making you feel even more alone.
My beautiful Sophia is really special and not only because everyone is special in their own way but also because genetically there's no other person like her (read here). When she was born we were given some literature about chromosomal disorders similar to hers which gave us little to no sense of what to expect because the range of characteristics were so wide. At that time I was not thinking about finding support, I guess, because everything was so new and I was focusing on getting through all the surgeries she had during those first years. But then time passed and I started feeling alone as I was struggling to find others whom I could identify with, even with the number of support groups that can be found on Facebook and other social media I was feeling alone. I found epilepsy groups, feeding disorders groups and speech groups where I could find answers to specific questions (which I'm grateful for) but still once my question was answered all the other things about Sophia, the beautiful and the also the difficult things about her condition would separate us from everyone else. I recently found a general special needs moms' group and I see posts from parents of kids from all kinds of different backgrounds, different diagnosis and different challenges but then I realized we all have something in common, we all want our kids to reach their potential, to be happy and we all fight really hard to make sure they are getting their needs met. I realized that although it's important to find and meet people to share the same experiences with, we should not let the different diagnosis or different struggles divide us but bring us closer together because we all do have one big thing in common: we are all parents of very special kids.
Maybe someday we cross paths with someone with the same condition as Sophia but in the meantime I am going to do my best to not let that feeling of loneliness stop me from enjoying the uniqueness of my beautiful daughter.

Thursday, April 13, 2017

Keep calm and model on

It has been a little over 4 weeks since I decided to really immerse into the PODD and show Sophia what could be her voice. It's amazing to realize the amount of beautiful moments of communication that have been missed between me and my daughter and so many missed opportunities to chat, to share, to discuss. In my last post (read here) I mentioned I was stuck saying the same three things over and over, we were not having conversations so much as me telling her where we were going three times a day. But in the last month we both have had so much fun talking about everything! I am modeling a lot and she is definitely listening and taking it all in, we are talking about things in a more specific way like this week when the weather was beautiful and we were able to go for a walk, I took my time and I told her that it is spring and nice so she would be able to ride her wagon. Or the other day we were at the mall and Eric was shopping for shirts, Sophia and I were just standing there and waiting and then I thought: this is a great opportunity to chat and I told her what daddy was doing and that's why we were waiting. We watch Elmo and Barney a lot, we always have but now we talk about what the characters are doing and we both really enjoy it. It sounds simple and obvious but it is not, it is a lot of work and a lot to remember, a lot of putting aside the feeling of looking silly and the frustration of making mistakes, it's a lot of remembering to use the PODD to model everything all the time and everywhere,  but all this is not hardest part of the process. The difficult part is to teach Sophia that the PODD is a powerful tool for her to use whenever she wants or needs something or someone. I want her to understand that she doesn't have to watch the show I picked for her if she doesn't want to or play with the toy I chose for her if she wants a different one. I got her a switch with the toilet symbol on it with my voice saying "I need to go to the bathroom" so she can push it when she needs it, she is still not doing it even though she understands what is for because I model it all the time as well as the teachers at school. I don't blame her though, I have been anticipating all her needs for 8 years! I feed her at the same time everyday, I take her to the potty on a schedule, I know most of her favorite things to play with and I make sure she has everything I think she needs in the moment I assume she needs it. She is still learning that there's is this amazing language system that we are using to give meaning to all the signs and gestures that Sophia has been using all this years and that I have understood for the most part. But the truth is that I can't read her mind and honestly I shouldn't, Sophia is a human being with thoughts, ideas and feelings and I want her to understand that she has the right to share them with the world. I know that when she realizes she has the power to express what's in her mind she is going to be unstoppable!!

Watching Barney and talking about it.

Watching Elmo and also taking about it.