Saturday, November 19, 2016

Another Side of Me....

     So, this is probably one of the hardest posts that I've written.  But, after much thinking and praying, I decided to share.

     This past summer was probably one of the hardest summers that I have had as a parent.  Marissa's behaviors were increasingly getting worse and her aggressiveness was at an all time high.  On two occasions, her meltdown could have lead to me getting into an accident and possibly hurting ourselves or someone else greatly.  More than one occasion, did I find myself pulled over on the side of the highway, praying that the meltdown would end.  I also learned this summer that people are not always who they say they are, and when the tough got going... they got up and left.  Leaving me even more helpless and hopeless then I ever had before.   I felt very abandoned by God.  I just was very isolated and alone.

    After I was diagnosed with Caregiver Depression, I decided that I needed to reach out for help.  I did to one person who I believed was a very close friend, but she turned her back and walked away.  I then contacted another friend who reminded me that as strong as I am, I also had to allow myself to be weak.  Kym prayed with me that God would show Himself to me daily in a real way.... and He did.  I then turned to my childhood friends, who I knew would have my back.  I was able to get some relief and pour my heart out to both Brenda and Stephanie.  Both, of them know me well and encouraged me to let my guard down and show another side of me.   This blog is that first step.

    To be quite honest, I'm tired of fighting against what everyone else thinks "we" (as a family) should do.  I'm also tired of having to constantly be on my "A game" with my daughter.   I just want to be.  I'm tired of explaining and explaining her disability to people that don't understand, even though they have good intentions.  For so long, I've tried to make everyone else happy and in the process, I've made myself and my daughter miserable by bringing her to activities that I knew would lead to a meltdown and hitting.  Last Christmas, Riss had to spend about 30 minutes in timeout because she was so overly stipulated and used up all her energy that all she could was hit and scream.  She lost any ability to express herself.   I was at a training today and the speaker said, "no where did you ask to be a parent of a child with a disability, it happened, you deal".  I never asked for this.  I've tried to do my best but so often I fall short.  What you see on my outside isn't how I always am on the inside.  I have my good days and my bad days.  Now, I'm trying to focus on healing myself and taking those steps so that I can be around for a while.

     I write this to remind each of you in our current world of turmoil, each person is going through their own journey.  Everyone has some sort of struggle that they are coping with on a daily basis.  Some handle it better then others and others are able to cry for help.  Things have gotten better.  I'm reminded that this is a journey and sometimes it is day to day and others its minute by minute.  But, knowing that I have God and a support system that I have built is what keeps me going.  Life isn't easy and in our toughest moments I am blessed that I have a little girl that loves me, a husband that not only terrific to me but the best father a girl can ask for and people who take the time to encourage us along the way.  I have so much to be thankful for and in this time of Thanksgiving, I can say that I am grateful beyond measure.


Tuesday, April 12, 2016

Why Autism Awareness?

It is this time of year when I start blowing up my Facebook newsfeed with information about Autism.  Why?  Because I believe not enough is being done to educate the public on this disorder.  It is the middle of April and I have seen zero news stories about Autism, but a lot about the Zika Virus. In fact one news article today had the headline, "Scarier then once we once thought".  While, I understand that the Zika Virus is serious is not having 1 in 68 girls and 1 in 42 boys diagnosed with Autism NOT scary?  

Each advocate for Autism has there one agenda for why they want Autism Awareness, but at the end of the day, parents just want to have a cure.  A hope that future generations of children will not have this neurological disorder that impacts our family and community greatly.  I advocate for Autism Awareness because of the way I feel that parents and the children are looked upon.  The judgement that goes with having a child on the Autism Spectrum.  However, its just not Autism that I advocate for, it is for all special needs children that are judged and made feel less in our society.  

As a mother with a special needs child, there is always a constant battle.  Every aspect of my life and my daughter's life must be thought out and planned.  There is no spontaneous trips.  A simple act of going to the zoo or beach has hours of planning and preparation and even then I always seem to fall short.  A simple conversation with her around is never simple.  I have to constantly be organized.  I have to fight for the medical treatment that she needs, the ever changing wavier system, and school.  There are so many different people in our lives that I have to make sure that it is all taken care of and nothing falls through the cracks.  

Then there is her.  Oh, how I love her.  However, I never know when something might be the trigger.  Everything I do is a system.  We have routines that we must follow.  One slip up and down she goes in a hurry.  Her frustration level is high.  She is stressed.  There is no peace.  I used to watch TV, I don't much anymore, I like the quiet.  The stillness of when she is in bed-asleep.  

I say all of this to say that I would like for not one person to ever be diagnosed with Autism again.  I want you to be aware because I urge you that if you know someone who has a child with Autism or any special need that you do something nice for them.  Send them a letter, encourage them, give them a smile.  That small token can put energy into a  mother and father that can keep them going until the next small gesture comes.  

Be aware.  Don't judge.  If you hear a kid screaming, laying on the floor of Target (yes, this happens)-just say to them, "you got this" and smile.  I'd love it if someone did that to me.  Instead of the scorning looks.  I have learned over time to just let her have her moment.  So if you see me and you see her laying, know that we may be there awhile.  But, I am praying the entire time.  

I know that my God even in my most desperate moments, knows where I am at.  He knows when I have to just put her to bed at 6:30pm, because I just can't do it anymore.  He sees my tears when I feel like such a failure.  He hears my screams when I ask "why Lord why".  He see me curled in a fetal position because I just can't face another moment.  He sees me as I lock myself in my bathroom because I need a time out.  He sees me laugh when she uses a word that she has heard from someone (my favorite is "actually").  He sees me smile when she gives me a hug.  He sees my heart jump a thousand beats when she says, "I love you mommy".  He sees it all.   Psalm 139:14, "I will praise You, for I am fearfully and wonderfully made".  Genesis 1:27, "God created mankind in his own image and in the image of God he created them, male and female".  

So to all my special need mom peeps out there:  Just remember "YOU GOT THIS".   For the rest of you that took time to read this blog, Thank you and make yourself AWARE.  Make yourself available.  If you ever get the opportunity to be in the room with a special needs family, learn something.  If you see our family, you will learn that the love we have is unconditional.