History on being a parent with a special needs child
|I remember those dreadful words like it was just yesterday. “I think he maybe autistic” the social worker stated nonchalantly after I explained the actions my son was or was not performing at his then age of three years old. I did not want to believe her so I had an out of body experience as my mind tried to rewind those words slowly, looking for a word I missed or may have heard wrong.
As I returned to reality I panicked with heart palpations, shortness of breath and lack of concentration taking hold of me. I looked for a way to escape the building. Run I thought as my anxiety heightened. No amount of running was going to change what I just heard, my child maybe autistic. No one in my or my husband’s family was autistic, so how did this happen?
I do not remember the drive home that night, I do remember calling my husband and telling him that our child could be autistic when I explained some issues we saw like how he was not talking yet, was having crying fits for what seemed to be no reason, not using direct eye contact, and not interested in toys.
After that call, I sat with my son in my arms and we both cried for different reasons of course. Not sure why he was crying but I was crying because of the motherhood experience I would not have. I would not experience what a “normal” mother could expect to experience. I would not be able to tell him to be quiet because he is talking too much. My son would not ask me to be a superhero for Halloween, or make a request for toys for Christmas. He would not ask for a birthday party at Chuckie Cheese, would not ask to join a sport, we would not have heart to heart conversations as he grew older. And, I probably will not have any grandchildren or experience being an empty nester.
That night I looked up the symptoms of autistic people on a website and my son exhibited eight of the ten behaviors listed. I was in a daze for the next week as I tried to wrap my head around the thought of having a special needs child despite all efforts for normalcy. But what I will do is worry about who will take care of him when my husband and I have passed on. He is an only child. I felt guilty for not having another child so he would have a sibling to look after him.
Here is a little background on my son. He was a preemie. I gave birth to a 1lb 9.4oz baby at six-and-the-half months pregnant. He was rushed to an incubator as I was given the news that he had a fifty percent survival rate. I remember my first night home after giving birth; I was lonelier than I had ever been in my life, my child at the hospital and me in the bed hugging a pillow for dear life as tears run down my cheeks.
My son stayed in the hospital for six agonizing months. His lungs did not develop so he had a trach, ventilator, and a feeding tube in his stomach which feed him throughout the night.
I worked diligently on stripping away the layers of prematurity over the next two years. Me and my son had made it, and I was excited that I had a normal child finally, or so I thought until I was slapped into reality once again by hearing my child has autism.
It has been five years since my son’s diagnosis and life for my whole family has been a whirlwind of appointments, tantrums, and sicknesses. It is a hard road but filled with moments that I never knew I would have, like when he first said “baby”, “come on”, and “go play”. He is a non-verbal so any word is like music to my ears. He loves to hug and kiss, what a sweetheart. He has taught me so many lessons, like how to have patience, that I am an advocate for people with special needs, how to show other parents and children how to interact with a person who is different from them.
I remember I would often say living like this was not my choice. But it was God’s choice. I saw that choice as punishment for a long time until the day I realized that God is never wrong, he gives special children to special people and I should be honored to take care of a child that requires many needs because the Lord deemed me worthy enough to do so.