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.