Patience to Endure

Tag: World Autism Day

  • Autism

    Autism

    Today is World Autism Day. Every day for us is autism day.

    Autism is just one of the many ICD-9s that accompany my son’s medical chart. At last count he had 15.

    Wesley was born in October of 2001. Despite multiple ultrasounds by several physicians, I had no idea he would be born any way other than a healthy baby boy until the moment of his birth. How I wish I could say otherwise. Sometimes I wish my story included the part where the amniocentesis came back abnormal but I gave a war cry, pounded my chest and said, “I can do this!”

    But God and Wesley held the secret for 37 weeks. Laying on the operating room table I knew something was not quite right. His cry was so quiet. The nurses were somber. No one congratulated me until his dad brought him over.

    He said, “Here is our son. He has some anomalies and the geneticist will see him in the morning. Isn’t he beautiful?”

    An intense, sudden state of panic overwhelmed me. Joy, excitement, fear, and sadness swirled in my soul and each feeling was indistinguishable in the tornado of such a moment. The human spirit is not meant nor equipped to feel so many emotions at once.

    Three weeks later we took Wesley to Omaha, Nebraska to see the geneticist there. As we drove I began bargaining with a God I had barely spoken to over the last ten years. I wasn’t even sure He would remember who I was. I begged Him anyway. Please. It can be anything. Just let me keep my son.

    After examining my sweet boy the geneticist sat down with a large text book. He flipped open the page and pointed to a picture.

    “We believe your son has Rubinstein-Taybi Syndrome,” he bagan.

    The tornado descended once again. I became dizzy. I interrupted.

    “Will he be mentally retarded?” I asked.

    “I don’t like to label kids,” the geneticist replied. “If you expect him to be a typical child with RTS he will very likely become a typical child with RTS.”

    He could see the pleading in my eyes.

    “But yes. He will have mental retardation.”

    I excused myself to the restroom. Locking the door behind me I collapsed, sobbing on the unforgiving concrete floor.

    How I wish I could go back in time and speak with all the knowledge I have accumulated over the last 19 years to that young mom crying. I would say…

    Don’t be afraid. You will figure out how to mother this child and he will teach you more than anyone else will without ever saying a word. You will have to fight for him. You will be his voice and he will be your heart. He is going to teach you to love unconditionally with no expectation. He will show you the meaning of perseverance and you’ll learn to take nothing for granted. You will be exhausted right down to your very soul. You will stumble. You will fail. You will get back up and try again because he will need you to. His life is every bit as valuable as everyone else. You will learn to have empathy and compassion for others deemed “less than” in society. Use your voice and use it loudly when need be. You will be a better mother, daughter, and friend because your son was born this way. Life will be amplified from this day on. The highs will be higher but the lows will be lower. This isn’t the day your world ended . This is the day you begin to become who you were meant to be. You will reconnect with your old friend and God will lead, support, and direct you for the rest of your days. Grieve because you have lost a significant dream. But then get up. Dust yourself off. We have work to do.

    Autism is not the end of the world but merely a transition into a different one. It is vibrant here. It is silly. It doesn’t make sense to me much of the time but does to my sweet son. This world is challenging. It is rewarding. It is exhausting and so exhilarating. I am a vastly better person for residing here. And after 19 years as a resident, I would have it no other way.

  • Even Loveable

    Even Loveable

    I never once imagined what types of challenges a family with a child with special needs faces until I had one. I never even considered their lives as perhaps different from my own until October 26, 2001 when my middle son, Wesley, was handed to me in the delivery room.

    Since his birth his diagnosis has changed. New ones were added and some changed entirely. When he was ten years old the diagnosis of Autism was added to his resume. It did not come as surprise like the other diagnoses. This one was entirely expected.

    When I speak about the world of autism to friends with typical children more often than not I receive one of three reactions. Sometimes their eyes glaze over and I can tell I am not speaking the language they know. Other times I am greeted with looks of pity and I am certain they do not understand. Yet other times they look at me as if seeking to understand but always as if looking through a window. They could not know my life in any other way other than peering into it but never stepping into the room.

    The world of autism is a colorful, bright, confusing world. It often does not make sense to me but it doesn’t have to. It is seeing the world through the eyes of my son whose brain does not process information like mine. Sometimes it is a beautiful opportunity and other times it is heart breaking.

    The world of autism is challenging. It is living in chaos while maintaining strict regimens. Deviations from the schedule can be catastrophic. Autism is violent and melt downs occur at any place and anytime. It is stubborn and unyielding at times.

    The world of autism is beautiful. It is a place of unconditional love. A place where it doesn’t matter what you did or who you are. You are a beloved friend. Autism is loving others with reckless abandon. It is laughter over the silliest things and sometimes over nothing at all.

    The world of autism is tiresome. It is constant exhaustion and being at a heightened stage of alertness at all times. It is trying to be one step ahead, attempting to predict the behavior of an unpredictable child. I am rarely rested or relaxed.

    The world of autism is celebratory. It does not matter the size of the accomplishment but that progress occurred. We celebrate everything. Wesley put his cup on the table instead of throwing it across the room – celebrate! He put three signs together – celebrate! He got out of the car in under twenty minutes – celebrate! Autism does not allow anything to be taken for granted.

    The world of autism is hilarious. I have developed a sense of humor to get me through. When the school emailed me to tell me Wesley was taking off his shoes and throwing them at people I couldn’t help but laugh and have a slight sense of pride. After all, he had put two skills together. He took his shoes off AND then threw them! Each one had taken years of physical therapy to accomplish. In the world of autism I laugh far more than I cry.

    The world of autism is triumphant. It is reaching in and finding more energy, more patience, more wisdom, more knowledge, more everything in order to be the parent my child needs me to be. It is the fire which refines me into a better mother, daughter, and friend. I am a better human being because I know autism.

    The world of autism is a blessed place. It is an impossible place on some days. It is an eclectic place every day. It is an amplified existence where the highs are higher but the lows are lower. It is not ordinary. It is our world. We can love it or we can hate it but we must live in it.

    I am now not who I was on October 26, 2001. Not only did my life change the next day, my entire world did. I went from one reality to another in the amount of time it took for my then husband to say, “the geneticist will come tomorrow.” I did not have time to pack my bags and plan a trip. I had no opportunity to brace for impact. I found myself in a strange land with a different language and I learned as I went along. However, now I am stronger. I am wiser. I am unconquerable because my son has shown me how to be. I learned to be a warrior by watching him work for every milestone and from the other mothers who showed me their beautiful scars.

    Our child does not “suffer from autism.” He has brown hair and green eyes. He has autism. It is part of who he is. He knows no other way to be. He does not look at his siblings longing to be like them. He knows what most of society still needs to learn – he is perfectly whole in spirit. I do believe he is more complete than I am. He is the most entire soul I know and it is an privilege to be his mother. It is my highest honor.

    When I first met Autism it was as an adversary to be feared but became a constant companion. It is understandable. It is acceptable. It is even lovable.