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.



   

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.  

  

Saying Goodbye to 2015....Welcome 2016

This blog isn't necessarily about Marissa but more about the impact that she continues to have on my life.  One word sums up 2015....Change.

Changing isn't easy.  This year I made a decision to step out of my comfort zone and switch careers after 16 years.  While it was one of the best decisions I have ever made it also came with some hard times that made me regret my decision a time or two.  But, fortunately God showed me that I am right where I need to be.  This change has been one of the best things that I could have done for my daughter and my life is certainly centered around her and her needs.

2015 also brought challenges with Marissa.  Raising her is nothing but a roller coaster ride.  While she has been able to gain so many new skills, maturing some,  the fight with her has become harder.  We have reached a pivotal time where her "difference" are becoming more apparent and my ability to handle them seems to be diminishing.  I have learned that it is okay to ask for help and I'm thankful that God has placed people in my life that are my cheerleaders.

My word for 2016 is Innovation.  This year my goal is to continue to try new things and to embrace those challenges that for whatever reason come my way.  Last year, I started a Grateful Journal but only made it to January 16th.  This year, I am going to try this again and continue to look for the silver linings even in my most trying times.

The biggest goal that I have set for myself is getting my health back in order.  I have realized that over the past fews week that taking care of me is just as important as everything else in my life.  The time I am able to carve out for me, just happens to be early in the morning.  Too early sometimes.

To end this year, I want to say Thank You to each of you that take the time to read my blog and have supported and encouraged me this year.  I don't know what 2016 will bring.  I do know that life is short and we have to make the most of what we have been given.  I pray that God will help you discover what your purpose is and help you fulfill all of your life's dreams.  You are not in my life by chance, you were placed in my life for a reason.  So to you, I wish you a very Happy 2016!

HOPE?

Wow! So hard to believe that it has been one year since my last blog post.  Time sure does go by fast.  But, when your juggling so much it is hard to have the quiet time to write.  In this year, we have seen many ups and many downs.  My girl always seems to be taking two steps forward and five steps backwards.  We just never can get a grasp on what makes her tick.  

Fifth grade is starting out like last year.  Teachers full of encouragement and optimism.  It is definitely appreciated.  When I look back, fifth grade was one of my hardest grades.  So hard, I had to repeat it.  I remember my teachers names and what classes they taught.  I'm friends with many of my fifth grade classmates today on Facebook and I remember the ups and the downs.  I remember that kids were mean and finding my way was hard.  Harder even the 2nd time around.  I was a strong kid and was able to survive it.  I think to myself that if I was like Marissa, I would have buckled in a heart beat.  

Unlike, Marissa, I understand that kids are probably making fun of her.  This is the first year, where she doesn't really talk about having "friends".  Thankfully, due to her special needs, she seems to be oblivious to it.  She's been hitting and throwing…..the school nightmare continues.  

But, in this blog, I am going to write about me.  My struggle as a parent with a special needs child in regular education.  The decisions that I have to make regarding my daughter's future.  The battle that wages in my heart and mind.  (Unfortunately, two of Marissa's classmates mother's had the "opportunity" to hear my vents over the weekend.  Sorry.)  

Marissa is smart.  Marissa when pushed can learn the material but she needs receptiveness.  She has five teachers.  Three regular ed and two special ed, plus her one on one aide.  ("Normal" kids only have three teachers.)  She goes to special ed for some reading and math.  Her mornings on jammed back full of transitions.  At some point, she will hit her boiling point, and its all over from there.  

Over the summer, I was able to get Marissa's brain trained to go to the bathroom.  She has a nifty little watch that vibrates when she has to go.  But, she had an accident.  In class.  With other kids.  So then I was faced with pull-up or no pull-up.  Decided to go with pull-up to avoid any extra teasing and now she is refusing to go to the bathroom.  It becomes a control issue and a meltdown shortly comes and then the whole afternoon is slightly to completely lost.  Pull-up, no Pull-up?  What do I do?  

Each little decision I make comes with thought.  Can she handle that outfit today?  Oh, yeah, no bows.  Team shirt on Fridays.  Which thermos does she want?  Christmas music in September, sure! Uh, oh, I tied her shoe too loose or I tied it too tight.  Is today the day, I told her she could wear a dress.  

I know that some people may wonder why I don't put her in a self-contained class.  The reason, once Marissa comes out of regular ed, she goes on a Lifeskills track with limited academics.  Which means no chance of a High School Diploma just a Certificate of Completion.  So I push.  I want her to succeed.  My mind goes to all the what ifs.  Can you imagine making such an important decision for your child at the ripe old age of 10?  Is a complicated situation.  One that I don't know what to do.  I get myself into this box and say "I'm going to do this" and then "this" happens and I'm like, "no, I meant that".  But, as long as I have HOPE, HOPE that one day, my girl will get passed this and one day, I will get to see my girl that I only get glimpses of from time to time.  HOPE.  

A Dark Place

Anyone at anytime can enter a "dark place".  We each have circumstances in our lives that really take us for loop and set us back to the point of "I don't know what to do".  I am there.  I'm in a dark space.  I'm watching my beautiful daughter spiral out of control and everything that I try to do doesn't seem to help.  I almost feel like I am standing on the edge of a beach on the sand and watching her slipping out slowly into the ocean.  I try to save her.  I try different things for her to hang on and they might work for a minute and then she slips off of them going further and further away.  I'm helpless and hopeless at this moment.  

Fourth grade has been Marissa's most trying year.  She has began to hit her peers and staff.  Her behaviors are becoming worse and to the point where she is head bunting and kicking.  Yesterday, she grabbed her aide's arm and scratched it to the point it drew blood.  Today, she kicked her, while walking laps (a longer story that I'm not going to get into cause it makes my blood boil) and they both fell to the ground.  Injuries to both and now she is suspended from school.  Marissa told me what happened and didn't leave anything out, except for why.  

We've tried meds, behavior modifications, positive reinforcement….nothing works.  Nothing.  I honestly don't know what to do.  Nothing makes her excited.  Nothing makes her sad.  She doesn't want to hurt people, but I honestly feel like she doesn't know that she is.  She has no concept of pain on her own self.  She can't read emotion.  She can't gage her own emotions.  We are in the vicious cycle called Autism.  I can't even begin to comprehend what it is like in her little brain.  

Tonight, I am begging God to heal my baby girl.  As I was praying, God laid on my heart, Jeremiah 29:11-14, "For I know the plans I have for you", says the Lord.  "They are plans for good and not for disaster, to give you a future and a hope.  In those days, when you pray I will listen.  If you look for me wholeheartedly, you will find me.  I will be found by you", says the Lord.  I will end your captivity and restore your fortunes.  I will gather you out of the nations where I sent you and will bring you home again to your own land".  Lord, I am praying.  I am begging.  Please please please stop this aggressive behavior in my daughter.  Please Lord give us wisdom on how to help her.  Bring us out of this dark place of captivity and bring us to a land where she can prosper.  Where she can learn to identify the emotions to be free from what binds her.  Lord, heal my baby.  

Mack- The Extraordinary Dog

As I write this my beloved Mack is sleeping.  I brought him home yesterday and he is quickly slipping away from this earth.  He has stopped eating, won't take his meds and has little energy.  I know you've seen my Facebook posts about him in the recent days, so I wanted to share his story with you because he has a lot to do with Marissa.

Before Steve and I got married, we had said that we didn't want to have children.  In 2001, (after circumstances I can't mention), I discovered that I had the "instinct" and wanted to have a child.  After months of testing and years of trying we basically had given up on the option of having a child.  We had dogs and that was all we needed.  During this time, we had lost Zeus (Steve's German Shepherd) and Midnight (black Lab) had went to live with a family that had a farm for him to run around.  We even got a Chihuahua (worst dog ever).  They really were just dogs to me.  I had a Golden Retriever, Amber, that died while I was in college and I swore then that I would never get attached to another dog, like I did her.   I did pretty good until Mack.

In March 2004, one of my good friends notified me that her Shepherd, Breanna "Bre",  was having babies.  Steve and I discussed it and we decided that we would go ahead and get one of them when they born.  I was there after Bre gave birth on April 1, 2004.  I picked out Mack from day one.  Each day we would go to see the puppies and each time my Mack would come and see me.  Even though I had him picked out it was really up to Steve as Mack was a replacement for Zeus.  The day we went and to see which one, here came Mack out of the litter and swiped at Steve's hand.  There was no question that Mack was meant to be ours or mine.  He was a mommy's boy from day one.

Mack lived in the house with us and never one time had an accident.  Shortly, after bringing him home, we discovered that I was pregnant.  Mack was with me the entire time.  He would often lay his head on my stomach as I progressed in my pregnancy.   Mack is a working dog and he clearly worked to protect his family.   He was in the house when we brought Marissa home and it was only after he decided to chew her oxygen cords that he began to reside downstairs and outside.  This really suited him fine and he continued to work just like he was meant to do.

We discovered shortly after brining Marissa home that Mack was very much in tune with her breathing issues.  He would bark like we've never heard him before she had an breathing episode.  My attendants that help with me with Marissa learned very quickly that they needed to pay attention to him as he was really able to prevent Marissa to stop breathing.  Once Marissa began to walk he would walk with her and let him hold onto his back to maneuver the back yard.  She'd fall, he'd help her up.  Its just recently that he has stopped doing this.   When times got tough for me, I'd run to him.  He became a pillar for me while I prayed or cried.  He'd always lick my tears and I knew that I could get up and go on.

We named Mack after my grandfather, George Mack Dashiell, who was one of the strongest men I know.  It just seemed fitting to name him after my grandfather even through we didn't know his personality just yet.  Mack is truly one of the most extraordinary dogs I've ever met.  He's been a service and loyal companion for over the past ten years.

Today, Marissa blurted out that "Mack is going to heaven".  He is.  Bringing him home has been a painful experience.  I am literally watching my buddy die.  I was in no way prepared for this experience.  I am for the most part and strong person, but watching Mack die is literally heart wrenching.  I will be losing my best friend and my furry child.  I know that Mack will be going to heaven (and if you have other thoughts, please keep them to yourself).  We've processed it the best way we can with Marissa and have explained to her that he will now be a dog for Ainsley, who passed away in 2011.

If you have a dog, give them an extra squeeze.  Dogs are here to teach us lessons.  Lessons of service.  Lessons of love.  Lessons of forgiveness.   Please learn the lessons that they teach us.  Never take one day for granted with them, your child or your life.  As I have learned this week, things can change instantly because we have no control over them.  Only God is in control.

I love you Mackadamion.  Now and always you will be in my heart.

Autism Awareness: Things I Want You To Know

October 25, 2010, we received the news.  My husband and I were told that Marissa has Autism.  I remember that moment as if it was yesterday.  I knew that Marissa was "different" but we had been in this battle for over two years as to whether she did have Autism or was it part of her chromosome disorder.  The words, I knew were coming but once I heard them, my heart dropped.  We had another appointment right after that and this doctor could tell I was out of sorts.  I was able to mumble out what we had just been told, and he looked at me and said, "I knew that, did you not know?".  He gave me a pat on the shoulder and said, "it will be okay".  All the way home from Charlottesville, I cried.  I prayed.  Fortunately, due to Marissa having so many other issues she had been receiving early intervention services since she was six months old.  

April is Autism Awareness Month.  Autism is growing at an alarming rate.  With the new data, Marissa is now 1 in 189 girls that has the diagnosis Autism.  1 in 68 Americans.  1 in 42 boys.  Look around you when you are out, some family near you is effected by Autism.  Are you that person that says quietly, "that kid is spoiled"; "boy, they need to give that kid a spanking"; "why can't they just leave"; "that parent needs to discipline that kid"or any other mutters you may have?  I am going to answer some of the questions that people have and hopefully provide some insight on what it is like living with Autism.  

These are things I want you to know:

1) I did not cause my daughter to have Autism.  I did not drink or do drugs during my pregnancy.  I only was sick once and was very careful about what I consumed.  I took my vitamins and had prenatal care.   My greatest sinful treat was Peanut Butter Pie from Famous Anthony's during my last trimester. Don't look at my posts or my pictures and think, what did I do- I did nothing.  

2) I cry.  I cry a lot.  I grieve.  When I see you out enjoying your times with your daughters, knowing that I can't do that with mine, my heart breaks.  I hope that you each understand that you should not take that for granted.  Marissa can't tolerate a movie theater, the mall, the grocery store, and there are only a handful of restaurants I can take her too.  I'm not saying this for you to feel bad or sorry for me. I like to see your posts and I know that you enjoy your time, but please don't take that moment for granted.  Cherish those times, there are a lot of moms that don't get them. 

3) No, I can not make her stop grinding her teeth.  She grinds because of sensory issues.   (I'm almost afraid of what she might replace it with). 

4) No, I can not make her stop making her "engine" noise.  She's actually recording every word you say right now- so be careful of what you say in her presence. 

5) No, that is not clapping because she's happy, she's clapping because it soothes her.  

6) Marissa can't express her emotions or feelings.  When she is frustrated she does not use words.  She will hit, throw, bang her head or start screaming "N-O- no".  This can happen without a moments notice.  Tonight, she was fine and the next thing I know she took a game and threw it a crossed the room and pieces went everywhere.  I've been hit, kicked, bitten, and my hair pulled.  Its a behavior that she can't control.  Medications help but they don't solve the problem.  Her brain processes information so differently then we do.  

7) Marissa is in tune with your feelings.  If your stressed or anxious, so will she be.  If your happy around her, then she will feel that and react positive (for the most part).  Don't hug her unless you ask and mindful of her personal space.  

8) Marissa is obsessive.  My house is always clean.  We do the same thing ALL the time.  If you did something once, that's the way you've always done it.  Her current obsession, "Alabama Gal" (thank you Mrs. Stevens at Yellow Branch School).  

9) I'm in reality of my situation.  I know that God has amazing plans for her.  I'm her voice.  I want you to hear me.  I want you to understand that why things we do and say may not always be conventional, I'm always going to do what is best for her and any child that has Autism.  There is nothing more that I don't understand is when a parent know that something is wrong with their child but refuses to seek help.  Get help.  Ask questions.  Be educated.  Advocating for your child can mean huge things.  Never, never, never give up.  

10) I love her with everything that is in me.  I know that she is going to be with me forever.  I give her a 110% all the time.  I make sure that she is happy, well cared for and receives the services that she needs.  I love everything about her.  I pray that God will heal her and use her for His good.  That others will see His light in her.  Marissa's situation is compounded by her chromosome disorder and her health problems.  I know that God has His hand on her.  I know that God can take her at any time.  I know that she won't be here forever.  I hope that she has touched your life.  I hope that you can say you are different because you knew her.  I know I am.  She is my hero.  My shining star.  My Autistic Princess.