Thursday, November 13, 2014

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.  

Saturday, June 21, 2014

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.

Tuesday, April 1, 2014

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.  

Thursday, January 30, 2014

"Fight...Grieve...Hope"- The Mantra of the Special Needs Parent

As I sit here and write this, I am again baffled by the system that is put into place not only to save our state money but also to assist with those that have disabilities.  I keep finding that I am asking myself the same question, "when is enough, enough?".  Of course, I have no answer but lots of passion and ideas on how to change this broken bureaucratic system.  It is truly my mission to see change to the waiver system in the Commonwealth of Virginia.  

Every Thursday, I have the privilege of watching young to old special needs individuals play basketball.  Marissa is the youngest one of this bunch.  Each Thursday, it seems that a new caregiver or provider sits next to me and we begin to talk about the story of our kid.  Most of the individuals are at least ten to twenty years older then Marissa.  Tonight, I was sitting next to a lady who has a 28 daughter with CP.  She has been on the waiting list to get a waiver since her daughter was 14 years old.  All she wants is for her daughter to have day support.  She applies for grants to pay for the program and stated that she has had numerous case managers over the years and no consistency in her services.  She looked at me and said, "all we do is fight".   I took a minute to think about what she was saying.  How true that statement is.   We fight with the schools to get the best and appropriate services for our kids.  We fight with society to accept our children as they are.  We fight with doctors to make sure our kids get the proper medical care.  We fight with our government to get services.  We fight with our kids when they are having a rough day.  We fight just to survive in a world that no one seems to understand, but us.  We fight to keep our kids alive and our spirits alive to make it through another day.  

If you drive by my house, you may see that it looks nice from the outside.  The yard is groomed.  A UNC garden flag hangs proudly.  Flowers bloom in the spring.  You might wonder about the family who lives there.  But, once you walk through the door you will get a very different idea of what it is like to live in my home.  Where every move I make has to be structured.  Always have to make sure that we do things in the same order each time, one wrong suggestion, could end in a melt down.  There are times that all I want to do is cry because I feel like a failure of a mom.  I feel like I am the only one who understands this.  Sometimes, I even ask, "why me, Lord".  Of course, there are the good times, but unfortunately those days are few and far between.  You learn to cherish moments in a very different way then most parents.  

I was talking to a parent the other night about her three year old playing with his poop.  Not normal three year old behavior.  She is frustrated.  She feels hopeless.    Always planning, always thinking, always trying to do something new that may help her son be better then what any one thought he could be.  She is starting to see the differences now between her precious three year old son and the "regular" three year old.  I just patted her on the arm, chuckled and said, "its going to get worse".  Each milestone that we see a child go through that is age appropriate- we grieve.  Each child that we see in public and we wish our child could be like that- we grieve.  Sometimes, we mask our tears and other times they flow like a river.  

I know that God has put all of these circumstances in my way, so that I can help cultivate change.  I have the passion, the intellectual ability and knowledge of the system to make my voice heard.  I have hope that I can climb this mountain and make things better for our kids that struggle with special needs.  

So, I urge you that if you are out in public and you see a caregiver with a special needs child, make sure you say something nice to them.  Tell them they are doing a good job.  Give them a smile or a pat on the back.  It goes a long way in giving them the strength and energy to face the day.  Because in the end....we fight... we grieve, but we never lose hope.