My oldest son, Aidan, was born on February 9, 2003. I am extremely blessed to be his mother and he is the light of my life and my heart. I cannot imagine my life without him in it. Aidan is my hero. I knew in my gut something was wrong with Aidan when he was not talking at the age of 18 months. I had him evaluated at Hackensack Speech and Language Institute and he was diagnosed with a severe speech delay and I was advised to take him to be evaluated by a developmental pediatrician.

Aidan was diagnosed with classic autism on May 4, 2005. I was devastated, heartbroken, and in denial. I had his diagnosis confirmed by a second developmental pediatrician just to make sure. It was then and there that I accepted my son’s severe disability and vowed to fight for him moving forward, making sure he got everything he needed. At 3 years old, Aidan was diagnosed with severe sensory integration disorder. He could never stop moving and is in constant motion even to this day. He started his full time ABA program at school when he was 3 years old. I advocated for every single service Aidan could have. He had PT, OT, and speech therapy five times per week. At 4 years old, he was diagnosed with severe verbal apraxia and would later be diagnosed with global apraxia. By the time Aidan was 5 years old, he had lost all his words. Previously, he had been able to say approximately 50 words when prompted at school. Now he only makes sounds to communicate his needs. I had him placed out of district, and in later years would move him several other times to out of district placements.

baby Aiden
Aiden close up

I have never heard my son call me “Mommy”. My dream someday is to hear him tell me, “I love you Mommy”.  I never needed an attorney to help me because this inspired me to fight for my son the most fiercely and relentlessly anyone could, and was always able to obtain whatever services he needed.

At 7 years old, Aidan had his first seizure while he was at school. He had an absence seizure and would be diagnosed with epilepsy a few weeks later. One of the scariest and most devastating things in my entire life was seeing my son turn blue, stop breathing, and collapse on the floor in front of me. For a time, he stopped having seizures, but after about 4 years everything changed. He started having grand mal seizures. I will never forget the first time he had one. It was terrifying. Aidan would have seizures in the middle of the night, and he has never slept through the night since he was born. I stayed up every night with him, watching him like a hawk. I barely slept for 15 years, and as long as my son was safe, I was ok with that.

The worst seizure my son ever had was in March of 2018. He was on the floor, his face was blue, he had thrown up in his mouth and stopped breathing. I was taking the throw up out of his mouth with my hands and I knew he had died in front of me that night, but truly by the grace of God, my son was brought back to me. I was a broken woman. I realized that ensuring his physical and mental well-being was something I could not handle on my own.

At 9 years old, Aidan was diagnosed with DiGeorge Syndrome, a severe immune deficiency disease where his body did not produce enough antibodies to fight off any infections. This explained why he always had ear infections and was getting sick since he was only a month old. His neurologist at the time said this was the severest case he had ever seen. I would have to take Aidan for antibody infusions at the hospital under sedation every 3 months. It was a devastating experience for both of us every single time. As the years passed, his antibody levels would remain higher longer. As of today, it has been 4 years since he has needed an infusion and for that I am eternally grateful.

At 12 years old, Aidan was diagnosed with bipolar depression and OCD. He would have manic episodes. I had him genetically tested confirming that he had bipolar depression which runs on both sides of our family. When puberty hit at the age of 11, Aidan’s behaviors worsened. From age 11 until he was with me in our home to age 15, he became violent and would attack us when he did not get his way. He would bang his head against the wall. He would chase me around the kitchen table to try and attack me if he did not get his way. I had him on a multitude of medications to help him have a better life. During the time Aidan was between 7 and 15 years old I advocated for many services in our house. My school district provided after school ABA therapy at our house for 12 hours every week. My school district also provided two speech therapy sessions for him after school every week. They paid for him to attend a special needs summer camp and provided ABA therapy when he returned from camp at our house for three hours every day. They also provided ABA therapy at our house daily for three hours during the last two weeks of summer. I was also able to get at home respite care five hours a week through Perform Care, and behavioral services on the weekends for six hours. There was a therapist in my house every single day to try and help my son reach his best potential.

Aiden elementary school

On July 5, 2018, I placed my beautiful son into a group home two hours away from me. It was the only place available in the State, and I was able to get him placed within ten days. It was one of the most difficult decisions of my life, but I knew it would be the best thing for him and our family. When Aidan first went to the group home, he weighed 264 pounds because all he wanted to do was eat at home, getting violent if I did not give him what he wanted. Presently, my son weighs 145 pounds and has lost a total of 119 pounds. He attends an out of district placement at one of the top private schools in southern New Jersey where he lives. He is sleeping through the night for the first time in his life, in his own bed in his own room. He has learned how to eat his food with a fork and now eats a variety of foods as opposed to only the handful he would eat for me. He is learning how to independently ask to go to the bathroom and is working on becoming fully toilet trained.

He is learning to communicate on a talker with the Touch Chat app at school and at his group home for the first time in his life. He is able to tell us how he feels. More importantly, on January 10, 2022 my son for the first time in his life and in my life independently told me on his talker “I Love You”. I had been waiting to hear this from my beautiful boy for the past 18 years!!!!

Most importantly, he is happy, healthy, and safe where he lives. That is all as a mother that I can ask for. I think about him every day and see him once a week. It does not get any easier being away from him and it has been three years. I still cry during the week when I miss him terribly and a piece of my heart will always hurt. I am so proud of him for his amazing transformation into the young man he has become, and he continues to thrive and flourish. Aidan’s smile lights up a room. He is the strongest person I know, successfully coping with so many devastating disabilities every single day of his life. My strength comes from him and always will. I will fight for him until I have no breath left in me.

Aidan and Johanna

I am so happy to add an update to Aidan’s story. We sold our home (which was 2 hours away) and bought a home in Berlin, NJ. We moved down here to South Jersey in February of 2023. I now live 5 minutes away from my beautiful son! I get to go see him whenever I want, not once a week for a couple of hours like I have been doing for the past 4 and a half years! It is the most wonderful glorious feeling in my life to be able to go see my son whenever I want and for as long as I want. Aidan is so happy to see me all the time now! I am finally at peace in my life being only 5 minutes away from my beautiful boy. There is no more sadness in my heart because I get to see him all the time and my heart does not hurt anymore. Aidan, you will always be my heart, my world, and my life. I will continue to fight for you and the developmentally disabled population until I have no more breath left in me.

Aidan in red shirt smiling
Aidan in pool
Aidan dancing with mom
Aidan at party