This girl!

This girl!

Thursday, March 16, 2017

Communication is power!

We got Sophia's PODD (you can read all about it here) two years ago when her wonderful former teacher introduced us to this amazing communication system. It was all new to us and I have to admit I didn't use it as much as I should have, I got stuck saying the same few things over and over and didn't go beyond more than telling Sophia where we were going or that it was time to eat. She seemed to understand what I was saying but I was not making progress trying to communicate with her when she was upset or when she wanted something different to do. 
I can't say exactly why I was not taking full advantage of the PODD, maybe it was fear of making mistakes, fear of not seeing progress, distraction from all the medical issues that were going on or simple laziness. Maybe it was all of those things. About two weeks ago I decided to get serious about giving Sophia the right to communicate, I thought: if not now, when? if not me, who?. I have been following different blogs about other families using the PODD, watching videos and reading tips and suggestions on how to use it in different scenarios. 
Also with Sophia's teacher's guidance I have been focusing on acknowledging when she is upset and showing her that it is ok to be frustrated sometimes and then reading a story about a little girl who gets angry sometimes (see video below). I have to say that I am impressed and very happy to see the progress Sophia and I have made with this particular issue, I used to get so frustrated when I couldn't figure out what was bothering her and that was obviously not helping either one of us. We haven't gotten to the point where Sophia independently tells me with the PODD why she is upset but she is paying attention and seems to understand that I am recognizing and respecting the fact that she is not happy and makes her feel better again. Most of the times she is upset either because she wants more food or more of one activity or because she is tired and I am able to address those feelings giving them meaning with the symbols in the PODD. 
Even when I am not sure what it is that's bothering her, I am learning that it's still ok to say that I know something is wrong but not sure what and Sophia calms down because she sees that I am communicating with her. 
I am also working on talking about our day, where we went and what we did and how we felt about it. It is a work in progress and I am making a lot of mistakes but I am learning and most important Sophia is learning too. She is able to make choices and she has told us when she has enough or wants more of a toy or activity, at school she chooses what activity or book she wants to use and has answered comprehension questions about stories that were read to her before. The progress is evident and there is definitively more to come but I need to keep working on modeling all the time and everywhere because that is the key to her success. Sophia, just like everyone else, has the right to communicate what is in her mind, her needs and wants, her likes, dislikes and opinions about the world she is part of. 
I love Elmo

Thursday, March 2, 2017

Who is Sophia?

Sophia is special.
Sophia is not a diagnosis and she is not a statistic. Sophia is special, and I don't mean special needs special but special. She is unique and not because there is no one else with the same exact chromosomal arrangement (read here) but because her personality is like no other.
Now, I may be a little biased here but she really is the sweetest kid I know. Sophia is also determined and kind, she is loving and lovable. The many obstacles and setbacks haven't been able to erase that beautiful smile from her face, the same smile that fuels my heart to keep on going when things are tough. She is also very smart, she knows exactly how to manipulate us into give hugs and kisses any time she wants and only when she wants them. Sophia can tell when I am sad and even though she can't say it with words, she can tell me that everything is going to be ok by putting her hands on my cheeks and looking right into my eyes.
Yes, Sophia has some disabilities but they don't define her, there's a lot of can'ts but there are also cans. She can't walk independently but she can crawl and she moves around when she wants, she can also walk holding hands or with the help of her walker. She can't play soccer or baseball (yet) but she loves bowling just like her dad. Sophia can't chew her food but she can swallow and loves to eat and she is always asking for more. She can't say mama but she can show me she wants me by reaching out for me whenever I walk by her. We may not bond over manicure and pedicure but by reading some of her favorite books or singing her favorite songs. Sophia can't say I love you but she can show me her love when she looks for my hand and holds it and doesn't want to let go.
Sophia is non judgmental and she is accepting of who I am, so much so that even on the days when I am being impatient or worrying about insignificant things she still wants to cuddle with me. She doesn't hold grudges and she can see past my many imperfections. Sophia has the incredible power of bringing a smile on anyone she meets, this is true even when she is not with them because it is impossible to look at her or even think of her and not smile! Even her doctors know her by her name and not by a medical record number because her smile is unforgettable.
I feel so honored to get to be her mama and I do wish I could make all the diseases, the surgeries, the difficulties, the setbacks, the stays in the hospital and the many medicines and their side effects go away because they have tried to cloud my Sophia's beautiful personality, I wish I could make them all disappear but I can't, because this was the hand we were dealt. What I can do is to keep enjoying of all what makes my daughter the special person she is.