Losing a Waiver

Today, I received a call that I cannot believe was made.  Marissa's case manager called to let me know that Marissa lost her ID waiver, effective yesterday.  For those of you that are not familiar with the waiver process here is a short summary.  Basically, the Commonwealth offers a few basic waivers to help children and adults with disabilities.  It is not an easy process to qualify or get approved for a waiver.  The waiver system, automatically gives Marissa medicaid (which is a secondary for her) and services that she needs for her medical care.  This is what I will say about her waiver, two years ago one of our Delegates requested that I keep a log of how much money we would have to pay out of pocket for Marissa if we did not have medicaid as her secondary- the cost was staggering but it was just under $150,000.  Yes, this would have been our out of pocket pay for Marissa to continue to see her specialists at UVA and to receive her Physical, Occupational and Speech therapy weekly.   We lost the waiver because a policy was not followed, a mistake by someone else not us or Marissa but yet she is the one that is now going to be penalized.  No one but her. 

So as I sit here, I have just finished my appeal letter to DMAS.  I have called everyone and anyone I know that could or can help us.  As I was writing my letter, I just broke down and cried.  And those that know me well, know this doesn't happen often.  Usually when I cry it is about Marissa.  Marissa has been doing so good lately.  A few bumps in the road but she is making so much progress.  Now, because of someones mistake and until the appeal process runs its course, Marissa's services are terminated.  I just don't understand.  I don't get it.  I'm tired.  I'm frustrated.  But most importantly, I'm mad. 

I'm asking each and every one of you that read this to really understand how politics affects children and especially children with disabilities.  Autism is real.  I DIDNOT do something to my child to make her have disabilities.  MY child should be covered.  Families that work and contribute to society should be afforded the same opportunities for their child as a poor family.  If Steve and I were to quit our jobs, sell our home, live in an apartment- guess what- Marissa would have medicaid, we'd have food , and we would be able to draw on her SSI (Social Security Income) for disabilities.  I mean really, this is where we are as a society? 

Those of you that pray, please pray.  Please pray that this situation will be resolved quickly and swiftly.  Pray that I will keep whatever sanity I have left (haha- I know, I know-like I was sane to begin with) and that God will put the people and open doors for Marissa.  I don't want this to be a stumbling block for her and her progress.  And as you go to the polls in November, make sure you do your research about the candidate.  Understand that this is a problem not only for us but for other middle income families who are facing the same dilemma daily.  That is your job as a citizen of the this country.  Take it seriously!

Past, Present and Future

Last week, as many of you know Marissa was taught the Bible story of Lazarus at VBS.  As we were driving home that night, she spontaneously asked me if we could pray for her legs so that she wouldn't fall anymore.  She was able to identify that God had preformed a miracle for Lazarus and she also wanted to be healed.  I sent a text message to one of my friends, who is very close to Marissa, and she responded back, "Don't you wonder what God has protected her from?".  This was a very poignant question and it got me to thinking about my own life and the past decisions that I made starting as a young child.  I remember clearly that at the age of 7 my life was turned upside down and I often wonder how Marissa would handle such a major life experience as I did.  Fortunately, for her she doesn't have to experience it.  But, it left me wondering what memories of her life will she keep with her when she becomes an adult.  

While Marissa struggles to literally move through life, she figuratively does not.  While she may have melt downs and her own set of stressors, they are different from the ones that each of us endure throughout our lives.   Our lives are complicated full of unnecessary drama, disappointments and complexity, full of emotions and feelings that Marissa just can't wrap her brain around.  She doesn't understand when someone is being mean to her or when a classmate is trying to get her to do something that she shouldn't do.  She doesn't grasp disappointment or understand sadness.   But she does understand that people love and adore her.   Love is the one emotion that Marissa knows and shows.  While she can be testy and stubborn and gets in trouble a lot, she continues to know that she is loved and never doubts it.   Her brain is incapable of anything else.   What an amazing way to live a life- only knowing and understanding the emotion and feeling of love.  I understand that this has its bad points but in a lot of ways Marissa's brain is her own utopia.  There's not a day that goes by, that I am not thankful that Marissa "gets" love.   Most children with Autism struggle with physical touch and don't express any of their feelings let alone love.  So tonight, I feel blessed that Marissa is able to handle physical affection and is able to say, "I love you mommy".  Because of this, I know that her future is going to be bright because in a lot of ways she lives a protected life.

Future Tarheel???? (Hope so)

This week Marissa had the opportunity to participate in a basketball camp at one of our local high schools.   I signed her up for the camp for two reasons (1) one of the coaches was one of Marissa's past teachers and (2) I love basketball.  When I paid the registration fee, I figured that I am paying for all of this money for her to be a spectator at basketball camp, just knowing that she would not really participate.  Boy was I wrong.

The first day when Marissa got home, she said, "I need a hoop, I have to practice".   Each day Marissa has come home with some new skill that I never thought she'd be able to do.   She is the smallest in the camp. (Remember, she is 7 years old and only weighs 42 pounds.)  But that doesn't stop her, the coach said "practice".  We even got our first sports injury, a swollen right eye and busted lip.  (Yeah!)

Today, the coaches held an Award Ceremony at the end of camp.  As I was in the gym sitting on the bleachers looking at the other girls play, I went back to my olden days of basketball.  The smell and the sound.  It brought back so many memories that it took everything I had not to get on that floor and start dribbling. As the coaches and camp participants exhibited some of the skills, my dream of raising a basketball player wavered.   As they were handing out awards, Coach Trent said that not every girl would get a trophy or a medal, they had to work for it.  As she was going through the awards, I appreciated the value of not giving an award for girls that might have not taken the game seriously.  As she went on, I became comfortable in my seat and cheered along with the other families watching their girls receive awards.  Then Coach Trent announced the "Sportsmanship Award".   But, unlike others, she said something to the effect that "this girl is an honor to know" and then called Marissa's name.   Everyone clapped louder and I began to well up at this very special moment in her life.  Marissa had no idea what it meant or what it meant to others.  In fact,  she refused to get her picture taken with it, but  I realized how big my "little" basketball player was in moment.  Marissa has a very special friend, name Gretchen.  Gretchen made sure that before I left I understood that she had earned that trophy and it wasn't just given to her.

I am so thankful for Coach Trent, Coach Koenig and Coach Cruz.  They took Marissa under their wing and opened their hearts and spoiled her some during the camp.   Even the girls in the camp, learned about Marissa and that just because you have a disability doesn't mean anything.   Marissa understood everything they said to her.  In fact tonight as I was cleaning, she was yelling behind me "run, run, run" "don't stand there you need to run, get the ball".  "Really, Marissa, I am vacuuming".  Then she says to me just before I put her to bed, "when are you going to play basketball with me".  Dream come true.

Reminders

Last night, Steve and I attended a town hall meeting about an autism school that could be coming to our area by the fall of this year.  I was excited for this new opportunity because our community lacks a lot of resources that would be helpful for parents with children of autism.  As I sat and listened, a couple of things became clear.  One I was sitting in a room full of desperate parents trying to find anything that will help them with their child.  And secondly, I realized I was not alone.  My thoughts are the same as other families who face this challenge every day.  Some with great esteem, others just trying to make it moment by moment.   Sometimes,  I get myself into this box where I believe that no one understands what I am going though.  How it feels to be hit by your child on a constant basis, or the repetitiveness of their minds.  Then I realized, as I listen to a man talk about his son almost crying, we are all in this together.    There are other moms, dads, and other caregivers that are dealing with the same meltdown, the same behavior, the same diagnosis.

Again today, I was reminded of the up hill climb that Marissa has to face.  As I was sitting in the waiting room, looking at the families wondering what their story is, again I am not alone.   Just because I am following doctors orders to a t,  I am not in control of this situation.  God is.  There are times when I just plea with God to heal her or  just to let me change places with my little girl.   One parent last night said, "haven't I been though the ringer enough?".  Unfortunately, the answer is no.  Marissa is 7.  This is my life.  The reality is that she will always need someone to care for her.  She maybe able to live semi-independently but she will always be dependent on someone.

For the most part, I am optimistic about her life and our situation.  But, at the moment I am feeling rather weary.  I am in a valley preparing to climb our next mountain.  And as everything, there is a season.  This has just been a long season.

1 in 88

April is Autism Awareness Month. The newest statistic is 1 in 88. Staggering. Each child's autism is different than another and often times the child will also be diagnosed with Sensory Processing Disorder and/or Obsessive Compulsive Disorder. Autism is a challenge to many families and I hope that soon we will find a reason that so many children suffer from this disorder. I pray that day will be soon.

Marissa was diagnosed with Autism in October of 2009. I remember the day perfectly. We had two UVA appointments that were back to back. We went to see the Developmental Pediatrician first. He just kind of said it, almost like we should have known. I think in the deep crevices of my mind I knew but I thought that everything we were experiencing with her was part of her chromosome disorder. As we left his office, I felt like I had just gotten run over by a bus. The car was quiet as Steve and I headed to the next appointment. When we got to the hand doctor, he asked us what was wrong, and we told him that we just found that Marissa had autism. He looked at us puzzled and said, "I thought you knew that". As we made our way home, we barely said a word. That night I cried and cried. I just wanted to know why. She had all of these medical problems do we have to add in autism as well. When I was finished with my pity party, I knew that denial of this situation was not going to help us or Marissa. As hard as it was for us to cope with the magnitude of the diagnosis, it wasn't going to change Marissa. Marissa has autism, Marissa is autistic- Marissa is still Marissa. She was born with a genetic make up like no other and as everything her in life we will take it on. Every day is new, nothing is the same and organization is the key. All we can do is manage her environment the best way we can and push her when we feel it is appropriate. We have learned that there are somethings we still need to avoid. Each day might not hold a success, but at least she has lived for another day.

Autism is hard. It is hard on the families, educators and physicians. We have been very fortunate to have people that love, support, encourage and pray for us on a daily basis. Just when I think we can't do this another day, God puts people in our path always at the right time. I hope that next time, you see a mother or father, who has a child with autism, that you say a small prayer for them. Its amazing what prayer does!

Its a Great Day!!!

Seven weeks ago, Marissa's school life was turned upside down. Marissa's trusted companion, Sarah, (aide) had her baby a month early. It was clearly unexpected and Marissa was not prepared. The school had done some work and had hired a new aide for Marissa during Sarah's absence. For the past seven weeks, Marissa has hit, laid in the floor, had to be picked up early, lost recess, several time outs, and extreme melt downs. Marissa lets say, hates change. She just can't cope with a world that is not organized or unpredictable. She also needs someone with a sense of humor to help her divert from her bad behavior. In the midst of all this, she also has had some medical issues that we have had to deal with as well as turning seven. (Side note: For those of you who have seen me recently, know I have cut all my hair off- this is why. It was either cut it or pull it out, I chose to cut it). She has been short tempered, hard to soothe and impulsive. We have tried every type of reward and consequence imaginable, but no luck. She just continued in her pattern of bad behavior.

So yesterday, was "D Day", Ms. Sarah returns. I wasn't sure if I should have gotten to school early to lay out the red carpet, hire a band and gets lots of balloons. We've been counting down this day since, February 10, and yes, you guessed it Marissa had a great day- NO HITTING. In case you missed it, NO HITTING. The first day is 7 weeks. A wonderful, glorious day! Today, was a repeat- NO HITTING. I pray that she will continue to be on this upside in her behavior.

Often times when I write this blog, its about the struggles and challenges of raising a special needs child. We still have those, but I love it when we just have moments of being normal. When she blends in with her peers or we are out in public and she acts like or better then every other child, its times like those I cherish. We don't have many of them but when we do, I want to celebrate, that is why I am sharing this with you. It takes a lot of energy for her to do so good and she has to suppress a lot of her sensory issues to maintain some sense of herself. Every day I become more amazed at her strength and resilience. She is still simply a miracle.

Happy 7th Birthday!

Today, we celebrate Marissa's 7th birthday. It is always a day of mixed emotion. Thankful that she is still with us and we are able to celebrate but yet a day of reflection of where we have been. This time 7 years ago, we began to find out slowly the medical issues that Marissa was facing and had no idea that one day she would be diagnosed with Autism. The next few days I relive those days of her being in the NICU. And as I look over this past year and the challenges she has faced, I can't help but call her my hero.

The other night I was telling Marissa's story to some new friends and they were amazed at how this little girl has so much going on inside. Every day she continues to fight all the odds and remain strong. While we are currently battling some behaviors at school, it is a testament to her strength and resilience.

We don't know what is in store for us this year. I hope that she will begin to manage her OCD a little bit better and stabilize her behaviors at school. I pray that she will remain physically healthy and that all her organs will continue to support her. I pray each day that God will continue to use her to influence others.

Thank you to all of our special friends and family that came to celebrate today. You help Steve and I each day by being apart of our lives. We are truly blessed that you have invested yourselves in Marissa. We hope that she had blessed you as well.

HAPPY BIRTHDAY, MARISSA!