Tuesday, December 6, 2011

What it's like....

I have been close to and working for individuals affected by special needs since the day I laid eyes on one of my close friends back in the 2nd grade. It has been my undying passion and it is my calling to educate the community, embrace this wonderful population, and empower them to be the best they can be without the need to "fix it".
I have gotten to know and love many families over the years, I'm still in touch with a few of them and I will value and admire every single one of those sweet families forever. I have been in many different spots in this field; I've been the therapist, the care provider, the teacher, and the paraprofessional. having been a care provider I have had the opportunity to be close to the family supporting the student with exceptional needs and I've seen their point of view and i've been that advocate along side them. But there is one thing I have never done or even realized I was missing... until now.

Many of you know that our baby girl, Faith has struggled to meet her milestones. This is new ground for new because as a professional I never had seen where it all started. I had never felt what it feels like as a mother to watch your baby march to their own drum and to face all the anti-fix it speeches I have given through the years. I wanted to write this because not to many people share these feelings or are aware of how it feels and it is truely a valuable tool for all you people in my field. Faith doesn't have a diagnosis and she still has a very good chance of growing out of her delays but the reality is that right here, right now my baby has delays and she is not where her peers are in her physical developmental milestones. I don't know what her future holds but I do know that no matter what, I have this experiance to draw from. Even if we were to wake up tomorrow and she suddenly started rolling over and eating baby food and putting weight on her arms and legs I will still have these feelings right now to put in my proverbial tool box.

So what are these feelings you ask? I feel encouraged everytime Faith does something new. I feel warm and gushy, everytime she looks at me when I feed her because in many ways she is still like a newborn baby. I feel torn sometimes and heart broken sometimes. I feel like a hypocrite sometimes because as strongly as I feel that people don't need to be cured or fixed; I have this instinct inside of me that drives me to do everything I can for my baby. I can't seem to convince this instinct sometimes that it's ok for her to keep her own beat. I feel frustrated sometimes even though she is all smiles. I see babies her age who do all these things and some of them are very advanced and I admit that I envy that sometimes. I feel heart broken sometimes. I feel sad and mad sometimes. I feel determined all the time. My one goal for all of my children is that they grow up to be God loving people who feel fulfilled... whatever that might mean to them. My biggest fear I guess for them is that they will be hurt or not heard or taken advantage of. Did you know that 66% of disabled adults feel like they don't have a voice and are not happy? That's only the ones who have the ability to communicate to participate in that poll. That is a scary thing to think of as a mom of a kid with an uncertain future. I know deep down and have been reassured many times that no matter what happens she will be ok. "ok" may not be what anyone imagines but she'll be ok none the less and I hear it and I know it but it doesn't invalidate moments like these.
Like I said, at the very least I know that I can use this as a professional in this field. I can give support as a mom who has "been there", I can show compassion and advocate with a new passion. I don't know what to do with all this as a mom but that in itself is an amazing thing to draw from later. I am SO SO thankful to have the support and encouragement that we get on a regular basis from friends and family. I am so thankful for where I've been in my skill set that gives me a place to escape to when I'm at the end of my rope as a mom. I'm so thankful for my husband who doesn't see what I see when I see things missing from Faith's skill set. He sees his beautiful daughter who is wonderful just the way she is. He sees a little girl who seems like she gets to stay tiny longer than he remembers the others doing.
In two days Faith will be 6 months old. I have been told not to compare her to her brothers or anyone else and I know why. At this age they were sitting up and they rolled around everywhere and they even got up on all fours and rocked back and forth. It can be discouraging and make you lose sight of celebrating Faith own unique milestones when you compare her. I struggle with that sometimes... I struggle to appreciate her just the way she is sometimes. I struggle to celebrate what she does and to not dwell on what she can't do yet. I know that every parent who has been in my shoes has struggled here and there with these same things.
It's kind of funny; even though I'm being honest about how it feels to be a parent (new to this game as I am) of a child who is exceptional, if some well intentioned person ever tried to tell me that she is anything but perfect I would rip them to shreds and give them a new education about how it's ok to be different and that she's beautiful and perfect just the way she is. I might struggle with how combine my own instincts with my beliefs but I know that she truely is perfect the way that she is even if she isn't like everyone else.

1 comment:

  1. I'm the kind of person who usually stays quiet because what I have to say is usually insignificant. I am not saying that someone needs to say to you, "what's wrong with her?" because I believe wholeheartedly that there isn't a single thing wrong with Faith. I believe she is just the way God intended her to be and that makes her perfect in her own way. What I'm saying is that maybe you need to hear someone say that so you can defend her out loud. Thinking something and saying something are two different things. Sometimes we need a vocal affirmation to kick our butts into gear and get us outta that funk. I don't think it's right for someone to judge, especially an infant. But to err is human. At some point, someone will say something. And you are going to defend her as adamantly as you would anyone else. And that, I think, will be the moment that it just clicks for you. Keep your chin up! She'll get where she's going in her own time.