Sunday, May 5, 2013

Keep calm and parent on......

When you are the parent of a child with special needs, guilt is a feeling you carry around as your daily cross.  You never feel you are doing enough.  Sometimes you feel you are doing too much.  You feel guilty of spending too much time dealing with your child's special needs and perhaps not enough with his/her siblings.  Other times you feel like you are NOT spending enough time and resources for your special kid.  You worry about using meds or not using meds; you feel guilty for his condition and you feel guilty for his future.  You feel that whatever you do or don't do now will be the one thing that will change his adult life for the better or for the worse.  Yes, there is a lot of worrying going on in the mind of a parent, of any parent, really, but when it comes to our kind, the ones with special kids, well, the wrinkles in the middle of your forehead get deeper and deeper no matter what miracle product you use.

Thank God for special moments like the one I had today.  I feel like this is the best mother's day gift I can ever get, although sometimes I really do want to get a MacBook Air.  Really, I do.  But I will take the words I heard from my Frankie any time over an awesome laptop like the MacAir.  He told me he liked me and then he told me he liked the way I was raising him.  Yeah, my seven year old told me that.  Autism has a way to impress me sometimes to the point of being speechless. If you know me, you know it takes a lot to leave me without words and yet, there are moments when I don't know what to answer to a child that is so wise beyond his age and yet melts down over simple, everyday tasks.  Does he even know what he is telling me?  I always doubt it and I question him only to find out that he does know what he is saying and that he really does mean it.  My parenting style is simple, I want my children, all of them, to be happy.  I want them to choose the happy road and not the sad one.  I want them to have hope.  I want them to get up when they fall and keep on going, no matter how many times.  For my little one, this is three times as hard because he falls a lot.  He has to have an extra dose of strength because his path is harder and he needs to keep up no matter what.  Today, he has to hold my hand to walk his path and sometimes I feel like I am dragging him.  I often slow down to match his pace but one day I know he will not need me to pull him or drag him.  He might not even need my hand at all.  I know that day will get here and I know I will be proud to have talked the talk  AND walked the walk no matter how inadequate or guilty I might have felt along the way. 

Yes, I AM raising my kids the best way I can but they are teaching me, every day to be patient, to see the world through their eyes and not mine.  Frankie allows me to understand that living with a condition like Autism doesn't have to be so hard.  There are these moments of brightness and warmth that I would never have experienced if he wasn't around.  I know my other two kids like me too.  I am not sure if they like the way they are being raised the same way that Frankie does but the fact that at least one of them is telling me I don't stink as a mom, gives me confidence that no matter what I do or I don't do, the fate of my kids is beyond my control and so is their love. 

To close this up, to all of you great parents out there who sometimes feel like you are not good enough, remember the latest meme and say to yourselves, Keep Calm and parent on....






Tuesday, September 11, 2012

If you have nothing good to say....

You know the good old saying, "if you have nothing good to say....say nothing at all."  And that I have done.  I have been silent.  Silent on this blog and silent on this life.  Yes, I talk, but I don't say anything.  I don't say what's really inside my head and inside my soul.  I don't say much because I can't.  I figured if I have no words of hope, then I shouldn't say anything at all.  Hey, you all know that thoughts become words and words become actions, so I figured if I don't talk, I am not sabotaging my life with negative thoughts verbalized in words and becoming my reality.  My reality is my truth.  It might not be all that great right now, but it's mine and I choose not to have a dark one.  I walk in the light and no matter how many clouds are on the sky, I will find the one ray of light left and I will follow it.  I am choosing happiness over sadness; hope over despair and I am choosing it for myself, for my children and for all the ones who I love.  I might not have much to say these days but I still believe that every day God gives me the opportunity to start over again.  Every day, every time - it's always a new beginning.

Now that I think about it, I do have a LOT to say but I am not saying it because it's a mix of good and bad.  It's overwhelming to have been afraid, very, very afraid and have taken a leap of faith anyway.  Packing up and coming back home might have seemed like the no-brainier answer to anybody but yet it was the scariest thing I have ever done.  I knew we needed to be back with our family but I also knew it was going to hurt.  I have managed to be strong on my own because I couldn't be weak, because I didn't have my loving parents near to comfort me.  I knew I was going to cry.  I knew I would be tempted to let down my guard before my family and take that shoulder that was being offered to cry on.  I knew that when my sister-in-law would tell me I wasn't alone, I was going to believe it and I would probably cry.  I didn't want to do it but I knew I was going to. I have broken down and it has felt terrible but it has also felt good.  As I write these lines, I am crying too but I am feeling the relief of sharing how blessed I am to have been given a real chance to be accepted and welcomed - understood and loved. Yes, my son has difficult days - he does, and now my family is witness to his struggle.  Not for a week in the summer and a few days in Christmas but everyday.  Every little meltdown; every big dissapointment; every therapy; every homework, every battle.  It's hard to see them learning to understand Autism and it pains me that they have to go through it with us because it's hard.  At the same time, I see how they also enjoy our little victories of everyday and appreciate the bright, amazing individual he is.  It's great to have someone to cry and laugh with at the same time and although I knew they were always in our corner, the hugs, the smiles and the tears are more real when they are not 3K miles away.

Moving from Seattle has been difficult because we had to start all over again - this time with a special needs child.  Locating the right school setting is still a work in progress and we struggle everyday with inclusion and services.  Building a new support team is exhausting because Frankie has constant changing needs and strengths and we are still searching for the right approach.  Throw in an unhappy teenager and a middle child that is still trying to find his way into this equation and it's a recipe for disaster.  But it's not, not really - it's more like a huge blessing wrapped up in bright foil paper.  This second tour of Miami has been an eye-opening experience of what's really important and what it's not.  Forget the heat, the traffic, the rudeness, the fast pace of an overpopulated city - keep the focus on our patient family members, caring and understanding old friends and the treasure of new-found friends walking with us through this uncharted territory.  It's all good.  

We are now where we need to be.  It's all part of a painful but perfect plan to grow strong in the midst of our weakness.  It's painful to talk about it but it's liberating.  If you are one of my Seattle friends, I do miss you and I am sorry for being silent.  I will forever be grateful to have met each one of you because you touched my life in a very special way.  If you are one of my Miami friends, I might not say much and I am not ready to party yet, but I will be - and that's a promise, not a threat.  If you are one of my family members, I have no words to tell you how blessed I feel to have you in my life - you are a kick-butt family that sticks together and makes it happen no matter what.  Thanks for loading and unloading, thanks for driving and for flying (Erin, that's for you too!), thanks for allowing us the space we need when we need it and for being in our face when it's time.  Thanks for the glass of wine and for the cup of coffee and thanks for the dumb jokes and the teasing - yes, one day we will eat organic food.  Right.

Turns out I do have a lot to say and it's not all that bad after all.  Perhaps I will start saying more from here on because there is always something worth sharing and we can all use a little pick me up story here and there!

Wednesday, April 18, 2012

Raining cats and dogs



It rains in Seattle. It rains a lot! It's not a heavy rain but it does rain quiet often...now, lately, it's been raining harder than usual. I am not sure if it's a spring thing or if the weather is just changing due to the hole in the ozone layer... the reality is the rain in this city is getting harder and harder. One rainy morning, while driving the kids to school, I couldn't help but to use the good old saying known to us all: "Oh, God, it's raining cats and dogs!" From the back of the van Frankie's voice questioned me right away - "Mom, is it REALLY raining cats and dogs?" Of course not....

Once again I had to explain to my son that I was using a "figure of speech" - an expression that is not literal but just used to describe something that is happening. I didn't question it when I first heard someone use it and I went on repeating it like a parrot, having no clue of  its real meaning. I had to promise Frankie I would Google the story behind the expression as soon as we got back home. And I did.  There are like three different stories, none confirmed and NONE makes any sense.  It figures...

Because of this kid I have learned more than I ever wanted to know about the history behind all sorts of things we say, read, sing, etc,...from nursery rhymes (don't remind me about "ring around the rosy," - it's creepy!) to everyday expressions and terms.  The quest for reason is never ending!  Now, people like me, who talk a lot, sometimes tend to fill "dead air" with totally superficial and meaningless things we say - this is not a good mix for living with a kid in the Autism spectrum! Frankie has taught me that every word has weight, meaning and consequence. I am more careful about what I say because for him, words have value, positive and negative and he will question every sound out of my mouth. I remember the first thing I had to learn when I was being trained to do ABA (Applied Behavioral Analysis) at home with Frankie was to reduce the amount of words I used with him. I had to use mostly action words and keep them to a minimum....It was the hardest thing I had to do in my entire life but it taught me to place importance and meaning in what I said and did. Best lesson ever learned now that Frankie is out to get me!

Our interactions regarding this matter is not always pleasant and funny like the dogs/cats/rain one; sometimes, they are just plain shameful for me.  There was a time when I was very overwhelmed and I didn't even realize when I told someone on the phone that I was ready to "kill myself" from all the stress I was under.  I don't think anyone who was around me at that moment even blinked at my words but Frankie came to me crying and asked if I really wanted to kill myself. No laughing matter, people - this really hit home. Once again, I had to explain to him that I really didn't mean to say something like that  and that I would never, ever consider taking my own life.  "Why do you say things you don't mean?" was his reply.  The truth is that I don't know why...but I must stop doing it. 

Being in the Autism Spectrum makes Frankie a student of "typically developing" beings and he questions our words, our actions and our decisions. Because he is different from the rest of us he goes around trying to figure out why we do the things we do - he often finds out there is a lot of following and not a lot of meaning in our conduct.  Why do we go through life saying things we don't mean; using expressions that mean nothing; wasting time and energy building empty sentences that have no substance? I guess it took a kid struggling with a condition we know so little about to remind me of the importance of speech and the responsibility that I have to him, and to others, to use it wisely and properly.

Lesson learned: No, it doesn't really rain cats and dogs. It does rain hard and a lot. Let's keep it simple but true.  Let's keep it real while we walk the talk, trying hard to remember not to talk too much.

Saturday, March 31, 2012

Light it up BLUE for Autism this April 2nd, 2012



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