This guest post is from Johanna Burke, Walk Co-Chair for the Northern New Jersey Walk Now for Autism Speaks. The following is a speech Johanna gave at the Northern New Jersey Walk kickoff about her son Aidan. Have a walk story you'd like to share? Email us at firstname.lastname@example.org!
Thank you for coming to the Northern NJ Autism Speaks Kick Off Event. My name is Johanna Burke and I am one of your walk co-chairs and I asked to be the last speaker today because I want to tell you why I walk for Autism Speaks. I hope my story inspires you, motivates you and encourages you to get out there and make a difference because 1 in 68 cannot wait anymore.
Today, autism affects 1 in 68 children nationwide; 1 in 42 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 45. 1 in 28 boys. New Jersey now has the highest rate in the country. We do not know what causes autism. No cure is known. The time is now for autism action in this state and in this country.
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 was diagnosed with autism at the age of 2. Aidan just turned 11 this past February. Aidan has severe autism-he is completely non-verbal and does not sit still due to his severe sensory disorder. He constantly runs around the house and requires 24 hour care. He does not have any words. When he was 4 years old he was diagnosed with severe verbal apraxia of speech. He had words when he was 2 but lost them all by the time he was 5. I have never heard my son call me “Mommy” or say “I Love You Mommy.” I have been waiting eleven years to hear Aidan say anything to me. 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 not fully potty trained and has no effective way of communicating with us.
Aidan was diagnosed with epilepsy when he was 7 years old. He can have a seizure at any time. Approximately 30 % of all children with autism have some type of seizure disorder. When Aidan was 9 years old he was diagnosed with a severe immuno deficiency disease called DiGeorge Syndrome. His body does not produce enough antibodies to fight off infection. I was told that he has one of the severest cases of DiGeorge Syndrome his neurologist has ever seen and compared him to the boy in the plastic bubble. He has been going every 3 months for IV 6 hour antibody infusions with sedation at the hospital and I am happy to report that this is helping him. He may have to go for these infusions for the rest of his life.
We just recently had Aidan re-evaluated again. We were told at this evaluation that he has severe autism-the most complex form that exists-to which I replied, I know. Then I was told Aidan will require someone to take care of him for the rest of his life-again I replied I know. It is like a knife cutting into my heart hearing this and every time I think about it. Lastly I was told at this point in his life--Aidan is now 11 yrs old--should have some form of solid communication with us & should be totally potty trained & he doesn't & he isn't. And you know what this person is absolutely right. Here is this child receiving all these services from our school district, but he is not where he should be progress-wise. So we are looking & going to get Aidan into a private school with an adult continuum program where he will receive more one-on-one attention. Focus on learning life skills & focus on his behaviors which are becoming more aggressive. He is now in full blown puberty and doesn’t understand what is happening to his body on top of everything else he deals with. He is now engaging in self-injurious behavior by hitting himself in the head with his hands so hard that I am afraid he will knock himself out.
So why do I walk. I am sitting at my kitchen table drinking my Pinot Grigio while Aidan stuffs his face with pretzels & runs back & forth to the living room. I was so excited to become a Mommy for the first time. I was so excited to see what Aidan looked like. Little did I know how drastically my life as I knew it would change. I never dreamed I would be the mother of a severely autistic child. I never imagined raising a child could require so much strength, energy, persistence & patience and lack of sleep. I never dreamed I could love my son as much as I love my Aidan. He is my hero, my inspiration & the reason I get up in the morning. His smiles and hugs make my life & I know one day he will be able to call me "Mommy" & tell me "I love you Mommy." I hope he knows how very much I love him & how I just want him to be happy in this life. I hope he knows I will never stop fighting for him & I will always be a voice for him. I so desperately just want to know how he feels, just want to know he is ok. I hope the next 11 years go by a little slower & I hope I am blessed to have him with me always. My Aidan came into this world at 1:19 am February 9th 2003 & made my world a better place. I know he is here to make a difference in this world. I know it, I feel it, I believe it.
I walk because I love someone with autism. I love someone who can't sit still because he can't feel where his body is in space. I love someone who stims on the floor with his chewy necklace to help regulate his body to all the sensory input his brain simply cannot handle. I love someone who makes loud noises in an effort to communicate with me because he has no words. I love someone who tries his hardest every single day to learn to live in our world when his brain is missing so many neuro connections to help make that happen. I love someone who gives it his all every day & works tirelessly thru all his therapies. I love someone whose smile brightens up my life when I praise him & tell him good job for going to the bathroom by himself. I love someone who is my hero. I love someone with autism. And I know all of you in this room love someone with autism. So get out there and go make a difference now! Thank you.
The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.