Tuesday, March 12, 2013

A Mother's Passion: Making Autism A Household Name In New Jersey


*This guest post is by my friend Johanna Burke. Johanna spoke at an Autism Speaks Awards Event last February which I had the opportunity to attend. For this post she has offered to share her speech and story with our community.

 Johanna has been walking for Autism Speaks for the past 8 years with her community of Hawthorne, NJ. She became a member of the Northern NJ Autism Speaks Community Awareness Committeee in 2010 and is currently the Publicity Chair along with actively being involved in promoting autism awareness. Johanna will not stop until autism is a household name in NJ. In addition she is the captain of "Team Hawthorne United" and her walk team has raised over $100,000 over the past 8 years for Autism Speaks.*

"Good evening and welcome to the Northern NJ Autism Speaks Kick-off event. My name is Johanna Burke and I am here to tell you why I walk for Autism Speaks Northern NJ. I hope my story inspires you, motivates you and encourages you to get out there and make a difference because 1 in 88 cannot wait anymore. We are all in this together and each and every one of us in this room can and will make a difference in our children’s lives.
Autism. I had never given this word a second thought, up until 8 years ago when my oldest son, Aidan, was diagnosed with it at 2 years old. My Aidan just turned 10 years old on February 9th. Still there is not a day that goes by without me thinking about it. Sometimes not an hour goes by without me thinking about autism.  So why do I walk. I walk because:

Today-Autism affects 1 in 88 children nationwide; 1 in 54 boys, making it more common than childhood cancer, Juvenile diabetes, pediatric AIDS, cerebral palsy, cystic fibrosis, muscular dystrophy and Down Syndrome combined. In New Jersey autism affects 1 in 49. 1 in 29 boys. It is now an EPIDEMIC. We do not know what causes autism. No cure is known.  

My oldest son Aidan is beautiful.  To look at him you would never know that he suffers from such a devastating disability called autism. Aidan has severe autism-he is completely non-verbal, does not sit still, is constantly running the house and requires 24 hour care. He is not an autistic savant. He does not have high functioning autism known as Aspergers. He does not have any words.  He cannot take care of himself. He cannot get himself something to eat or drink.  He does not know how to take a bath by himself or wash himself.  He does not know how to dress himself.  He is still wearing a diaper and does not know how to go to the bathroom by himself. I have been changing his diapers since he was born-10 years ago. 

Aidan also has severe sensory integration disorder which he was diagnosed with right before he turned three years old. This disorder is the inability of the brain to correctly organize and process information captured by the senses. Essentially, Aidan cannot feel where his body is in space.  This is why he is in constant motion and never sits still. In fact, Aidan’s body will only calm down at night after he has taken his prescription medication Risperidone which I call the miracle drug because it is the only thing that gets Aidan to sleep at night for at least 5- 6 hours a night. Aidan has never slept thru the night since he was born. Now whether he sleeps thru the night, even on his medication now, is a crap shoot. Sometimes we start our day at 1 am, 2 am, or 4 am if I am really lucky.

My Aidan has no words.  He is completely non-verbal. When he was 4 years old he was diagnosed with severe verbal apraxia of speech which means his brain cannot connect with the muscles in his mouth in order to produce speech.  He had words when he was 2 ½ years old -5 years old. He would say them when he was prompted. Words like car, hi, bye, Pop, Dora, owl.  I wish I would have recorded these times because I do not remember what his voice sounds like.   I have never heard my son call me “Mommy” or say “I Love You Mommy”.  I have been waiting ten years to hear Aidan say anything to me.  Aidan does make a lot of loud sounds and noises.  Sometimes on the verge of screaming are his noises-an ear piercing scream that goes right through you.

Aidan was diagnosed with epilepsy when he was 7 years old. He can have a seizure at any time. His last major seizure was over a year ago and was truly the most horrible thing I have ever witnessed in my life. I watched my son turn blue, his eyes roll back into his head and pass out on our living room floor completely unresponsive. I am happy to say he has not had another seizure like that since then. Approximately 30 % of all children with autism have some type of seizure disorder. Aidan can never be left alone. Someone has to be constantly watching him because he can have a seizure at any time.

In March of last year, Aidan was diagnosed with a severe immuno deficiency disease called DeGeorge Syndrome. His body does not produce enough antibodies to fight off infection in his body. This explains why he was always getting sick from when he was born. He had constant recurring ear infections from when he was a month old. He has had 3 sets of tubes put in his ears, his adenoids removed and his tonsils removed all by the time he was 2 years old. I was told that he has one of the most severest cases of DeGeorge Syndrome his neurologist has ever seen and compared him to the boy in the plastic bubble. His antibody level is at 200 when the normal antibody level is at 800. He has been going every 3 months to UMDNJ in Newark for  IV 6 hour antibody infusions with sedation at the hospital and I am happy to report that this is helping him, however, his antibody levels gradually fall again. He may have to go for these infusions for the rest of his life. He is on a constant antibiotic in between his infusions to help ward off any illnesses.

So why do I walk. I walk because my Aidan is truly a hero in my eyes.  He gets up every day and has to learn how to live in our world and adapt.  Autism makes this so hard for him every day, every hour, every minute.  I sometimes try to imagine what it is like to live in his world.  And I can’t.  And then I cry. It makes me so sad.  It is an overwhelming sadness that I don’t think will ever go away.  It permeates every part of my being. My Aidan inspires me every day to get up, fight the fight, and keep the faith. As soon as I see that huge smile on his face in the morning, it motivates me to keep going. It motivates me to make the most out of every day that we all have together.  I take one day at a time and always try to live in the moment. I have learned to enjoy each day as it comes and treasure the little things that Aidan is able to accomplish like greeting me with a big smile on his face and seeing the excitement in his eyes when I come home from work. And you know what it could always be worse.

It took me a long time to come to terms with my son’s condition. I had to look at the good things and not focus on the bad or I would be destroyed. I always try to focus on the positive with a smile on my face. I think most people would be surprised to know what goes on behind my infectious smile. My Aidan needs my support, my strength, and my perseverance. My son does not have a terminal disease. He is not physically handicapped. He is not confined to a wheelchair. He does not have cancer. And I am eternally grateful for that. I cannot imagine my life without Aidan. Nor do I ever want to. His hugs and kisses make my day-they make my life.

I have been walking for the past 8 years with my community of Hawthorne for Autism Speaks. I am proud to say that I became a member of the Northern New Jersey Autism Speaks Community Awareness Committee in 2010, and currently I am the Publicity Chair and am actively involved in promoting autism awareness and will not stop until autism is a household word in NJ.  

I am proud to say I am the captain of Team Hawthorne United and we were the top Walk Fundraising Team in Northern NJ for 2012 in that we raised over $25,000 for the walk. My team raised over $21,000.00 the year before and was the top community fundraising team for 2011.

We walk every year to help find better treatments and ultimately a cure for the millions of families affected by this devastating lifelong disability.

I walk so that someday my Aidan may be able to go out to dinner with his family and enjoy a meal at a restaurant.

I walk so that someday Aidan may be able to go to the grocery store with me and pick out his favorite snacks to buy.

I walk so that some day Aidan may be able to go to the mall with me and pick out his own clothes to buy.

I walk so that someday Aidan will be able to put his socks and shoes on by himself.

I walk so someday Aidan may be able to get himself something to eat or drink by himself.

I walk so that someday Aidan will be able to have some sort of relationship with his little brother Dailey who he has never played with or spoken to or even acknowledged in the past 10 years.

I walk for Luke, Anthony, Alec, Angel, Mattie, Mikey, Mark, Kyle, Brenden and Danny.

I walk for your 1 in 88. I walk for my 1 in 88.  

I walk so someday I can hear Aidan call me “Mommy” for the first time. I walk so someday I can hear Aidan tell me “Mommy I Love You.”

I walk because if I stand still it would destroy me.  I will continue to walk until I have no breath left in me.  I walk because I have hope and I will continue to have hope because without hope, we would have nothing. I walk with all of you because it is my belief that working together with Autism Speaks we will find the missing pieces of this puzzle together. Thank you.

Team Hawthorne United has a Blue Hair Extension Fundraiser for April-Autism Awareness Month coming up on Sunday March 24th at the Ambulance Corps Building-970 Goffle Road in Hawthorne, NJ 07506. The event will be held from 11 am to 4 pm and each blue hair extension is $10 which will be donated directly to Autism Speaks on behalf of our walk team-Team Hawthorne United. To donate directly to her team please find her team page here

3 comments:

  1. Amazing women! My brother is disabled not near as bad as your beautiful son! Remember while he may not speak with words the smiles are his way of saying I love you mommy and thanks for being so wonderful to me for all my life. I will walk this year because your 1 in 88 is my 1 in 88!! Thanks for sharing your story. I pity not those made perfect in gods eyes, for he made your angle perfect in your eyes also. No matter what some may say he is perfect! God bless.

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  2. I appreciate your initiative. It is really adorable Johanna. You haven't started a step only for your son, infect you want every child to walk, to speak up, to say mumma to his mum, to take care of himself and to behave like others do. I want to tell you that I too have a kid who is suffering from autism, I know what kind of problems you are facing. It is difficult for a mother to her child in this situation, I understand. But I am sending my child to training programs running by Cluas autism experts so that he can say some words, react on things he likes or dislikes, etc. He has slight improvement in his health. I wish your son can do all the things that you want him to do himself.

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