Fight 4 Autism
Anthony came into this world on a gorgeous Tuesday night in October. He was a healthy baby boy who never had any trouble sleeping, he was a good eater and never had any stomach issues. He was a joy to be around, and was a very happy baby. He hit all his milestones early and was even walking before his 1st birthday. He was an early babbler and his babbling eventually turned into words like dada, doggie, ball &eat. Even though I waited I never heard him say the word mommy. Anthony’s 1 year checkup went fantastic, the doctor was very happy with all his progress and said okay, see you at 18 months. Never did I imagine how much would change before that next visit. Shortly after that visit, Anthony came down with a fever virus, it spiked to 104. Anthony was never the same after that night. He stopped responding to his name, he slowly lost all the language he had and never formed new words. He stopped dancing to Elmo’s World and completely stopped playing with his toys. He found a new interest in his shadow. Anthony was also getting aggressive. Something was wrong.
Alec Michael was born on June 19th, 2006. I remember him being placed in my arms for a few seconds and then taken away from me as the nurses wheeled him into the nursery and the doctor closed up my C-section. I remember having anxiety because all I wanted to do was hold that precious little boy & protect him forever. It was the beginning of a bond that will never be broken. Alec was a very happy baby, always smiling, giving hugs and kisses to anyone who asked. His big brown eyes could melt anyone’s heart and he had me wrapped around his little finger. His development was right on track. He loved to look at books, watch Mickey Mouse and would even hit a baseball off of a tee. These memories are still vivid in my mind and I cannot stop asking the question, “What happened?”
When Alec was 2 ½ years old, I started noticing his speech was delayed. He was able to repeat words and speak 2-3 word phrases but that was about it. He wasn’t connecting the words together or answering my questions. I knew something wasn’t right but never imagined the path our family would be led down. Alec was diagnosed with autism right before his 3rd birthday. That day changed our lives. The dreams that I had for Alec were put on hold. He would have to start a pre-school program in our town for autistic children. The pre-school that I thought he would attend was no longer. The play dates that I was looking forward to him having were never to happen. Our lives were forever changed with this diagnosis.
Alec entered school at just 3 years old. He was given and IEP, therapies and a sensory diet. He was pushed to do work that was foreign to him. This little boy was determined and fought his way through. Alec loves to be praised so he would work for hugs which his teachers were more than happy to give to him. Today he will still work for hugs but Snickers seems to be more of a motivator. Although he has made tremendous progress, Alec is far from where he should be academically. He only has functional language, requesting what he would like. He still cannot tell me if he is happy, sad, mad, cold, hot, scared, or sick. He cannot dress himself, pour himself a glass of milk, write his name or brush his teeth. These are all things that still need to be done for him. Alec has never had a play date, been invited to a friend’s birthday party of played an organized sport. He faces challenges every day that I cannot even begin to imagine. He must adapt to a world that he doesn’t understand and to society that doesn’t understand him. It is heart breaking to see Alec get frustrated when he cannot get the words out that are in his head to express himself.
Alec is my hero. Even with everything he has to deal with, you can always find him with a smile on his face. He is the sweetest little boy and I adore him. His hugs and kisses make my day and his smile makes me smile. He has come so far since his diagnosis and I am beyond proud of him. Although he will face many more challenges and obstacles, I know he will be successful. I will never give up hope for my son. He is my heart and I am his voice. I am so grateful to have an amazing support system behind me. I cannot thank my friends and family enough for all of their unconditional love and support for Alec.
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. He does not have any words. 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 eleven 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 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 full potty trained and does not know how to go to the bathroom by himself. 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.
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 2 years 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.
At the age of 9, Aidan was diagnosed with a severe immune deficiency disease called DiGeorge 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.
(This speech was written 2014)
Autism. I had never given this word a second thought, up until 9 years ago when my oldest son, Aidan, was diagnosed with it at 2 years old. My Aidan just turned 11 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. 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. It is now an EPIDEMIC. We do not know what causes autism. No cure is known.
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.
Beautiful little Mason was born on February 23, 2011. From the day he was
born, Mason has brought such joy into our lives. A little over a year after Mason
arrived, along came his wonderful little brother Richie (born on March 18, 2012). As
Richie was developing in his first year of life, we started to notice little milestones that
Richie hit that Mason had not reached (i.e. waving or clapping for example). Those were
our first clues into the possibility of getting him evaluated by a developmental
pediatrician. On February 11, 2013 Mason was officially diagnosed with Autism
Spectrum Disorder. Although we, as his parents, knew the diagnosis was coming, that
appointment is something we will never forget. At first, we left feeling overwhelmed, lost, worried about the future... But then we remembered. He is still our Mason. He is still the same boy he was yesterday, the day before he was diagnosed. The diagnosis doesn't change who he is, and it never will. We decided to look at that diagnosis as a label that was going to allow him to get to help he needs. And one that would help us learn how to understand and help him too. We were ready to take this head on, to help Mason fight to have the best, happiest, most successful life possible.
Mason dove right into countless hours of early intervention and private ABA, speech, OT and PT therapies that first year. And then when he turned 3, he started preschool at a full day Autism program, where he still is today at 4 years old. In addition to school, he continues to be involved in private therapies and activities after school and on weekends. He is the most hard-working and determined little boy. And man, he is a fighter. The progress we have seen over these last 2 plus years has been amazing.
But autism is just one part of Mason, it doesn't define him. Mason is so many other things. Mason is sweet, he has a heart of gold. He touches the lives of everyone he meets. Mason is smart, he is quick, and he is funny. Mason is a great swimmer and a great runner (possible future track star!). Mason is a little boy who likes to play outside with neighbors and friends, go to parks, and just be a kid. Mason loves his family. He is a great brother and the most amazing son. And we are so incredibly proud of him. We will never stop fighting so that he can be the best Mason he can be!
Anthony was diagnosed was ASD, Autism Spectrum Disorder, just after his 2nd birthday. He was working a full time with all the therapies he had between ABA, speech and OT. It was during this time he found a comfort in music, he would start watching music therapy videos, where he started to imitate the other children in the videos. It was a breakthrough. Anthony started humming songs in the car, Kings of Leon “Use Somebody” and Lady Gaga “Bad Romance” were the songs he started to connect with. When Anthony was 3 years old he was enrolled in our town autism pre-school program where he continued his therapies. It was at this time he did a feeding program with his fantastic speech pathologist Robyn Walsh. He was also getting private music therapy at Tempo Music Therapy in Nutley NJ. Within months at this school and music therapy I started to hear words and finally it happened, one day driving in the car I hear from the back seat “Mody” since Anthony couldn't properly say “mommy” he started to call me “mody” It was music to my ears, and as his speech was improving so did his “mody” he was finally able to call me “mommy”.
My son is now 6 1/2, he is thriving to say the least. As I am writing this I am listening to him play in his playroom. He has his Star Wars toys out and he is pretend playing, something he was taught to do. He is also having an intelligent conversation with my husband about the movie. Anthony still enjoys music on his iPad and he is working in a high functioning academic class with peers his age and is being mainstreamed for certain subjects. He is also working a grade level higher in math. He enjoys video games, science, bridges and can give better directions than google map. He is enrolled in the towns recreation basketball and after school fun, as well as Little League with neuro-typical children. Anthony has friends, and he is starting to have play dates. Anthony also enjoys public speaking and wants to help kids with autism like himself. He once said “Some of my friends don’t have any words, but that’s okay I understand them just fine”. Anthony is a hero, he is proving that autism isn’t going to define him. He is a truly remarkable kid who will always be determined and nothing will ever stop him.