I set out Jack's food. Would he eat it? I never knew. A homemade muffin - made with Almond Milk, wholewheat flour, squash, pumpkin, chocolate chips. A yogurt topped with colorful sprinkles. Frenchtoast - whole wheat toast, organic eggs, pumpkin. Almond milk to drink. I was trying so hard. I would try anything. I wanted to help, to do anything... the morning was going by quickly.
7:30 am I got Nora up. I missed her. Wanted to be with her. Wanted things to be simpler. I put those thoughts aside. I got her dressed, did her hair, packed her bookbags. She was ready to go. A neighbor picked her up and took her to school. I was jeaolous, I wish I could have taken her to school. Nervousness took me over. It was time to go.
How many hours left of hope? I worried not many. I stopped at McDonald's - a breakfast sandwhich for me, a hashbrown for Jack. Time to pick up Hannah. At least I would not be alone. I wished Paul was with me. I needed him. I needed my partner. Was I losing my son? Would I lose my husband? Would I lose my daughter? I was losing myself.
8:30 am I picked up Hannah. I focused on directions, talking, driving. I went 394 W when I meant to go 394 E. It was an out of body experience. Someone else was driving... I don't know how I did it. Real Kara was scared, crying, screaming. I was driving, but I was imagining myself running. Running, running, running. It felt good, I felt strong... I never wanted to run... but I heard a train. It was louder and louder and louder. It was coming and I could not outrun it.
9:30 am Our appointment begins. Dr. R is so kind. We start with a parent interview. I leave Jack with Hannah. He is happy. Dr. R asks us about the past two years - starting in chronological order. Paul is on the phone - conference call - he is in Chicago. I focus on answering all of her questions. I try to be honest, to answer clearly, to admit what I don't know. She asks, "Does Jack know his name? Does he respond to his name?" I know that he doesn't. I've been testing it myself. He doesn't know his name. He doesn't respond to questions. He doesn't follow directions. He isn't social. He has abnormally long, strong temper tantrums. He doesn't hold eye contact for long periods of time. He rarely speaks - he usually cries, or grunts. Dr R asks how many relationships Jack has. I answer, "Not many.. me, to a lesser degree - Paul and Nora. His teachers. That's it." And I remember that day in Dr. Bryan's office in late December... I was so overwhelmed... I asked her if something was wrong, was Jack normal? Dr. Bryan asked me, "Why do you think something is wrong?" I say, "No one likes Jack or wants to spend time with him, not even his grandparents. Is that normal?" I am full of embarrassment, regret, shame. She stops and take me seriously... "No - it is not normal. Something could be wrong. Come back and see me - without Jack."
I know the truth, I know it is bad... but still I hope. The parent interview lasts a long time.
11am It is time to evaluate Jack. We've been through so many evaluations. This one is supposed to be fun. I still have hope. I watch Jack interact with the toys, interact with Dr. R. Jack is similing and laughing. Is he doing good? Will I hear PDD-NOS? I tell myself - YES! I am full of hope. I think this portion is about an hour long. It is hard to remember. Jack has a dirty diaper - he does not care. Is that normal? I worry it is not. I am scared. I am proud of Jack. He is so young - not yet 2.5 - and so many tests, this world is hard for him. The evaluation comes to an end. Dr. R needs some time to formulate the diagnosis. I don't even ask for a hint or what she is thinking. I don't want to know. I want to hold onto hope.
12:45pm Time for diagnosis. Dr. R explains there are 3 Criteria for an autism (ASD) diagnosis.
The first is socialization. Jack has inconsistent eye contact; he lacks language skills, he is not reciprocal, he socializes on his own terms - based on meeting his needs, he is not interested in peers, he doesn't respond to his name.
The second is communication. Jack has a delay in language, he doesn't understand, he is behind....
The third is restrictive interests and repetitive beheviors. Jack is rigid in his patterns and expectations. He is extremely upset when his expectations are not met. He has hand flapping. His focus in intense where he wants to focus. He is not open to transitions or changing his focus.
3 criteria for ASD. 3 criteria met. Hope is gone. Jack has full autism. I don't get to hear PDD-NOS, I don't get Aspergers. I had hoped, wished, wanted... Good-bye hope. What does this mean? I am scared....
Dr. R is so, so nice... she tells us what she recommends, answers questions, tells us we can cure this.... I am glad Sally is taking notes. I could talk to Dr. R forever. I have so many questions. I am doing okay. Then Dr. R suggest genetic testing. She is concerned for Nora - for Nora's children. Grief overcomes me. Will I never know peace? Over the past weeks I had cried so many times - but never as hard as the night I prayed, begged to God that Nora would NEVER know this pain. I begged him to spare her this pain. I love her so, so much. I begged God to give her happiness, give her a beautiful life, let her hold her babies in her arms. She is such a beautiful, compassionate person. She would be a wonderful person. I don't want to know what other cruelties my genes my have in them. I curse myself. I hate myself. I am so angry. I don't know what to do. My face crumbles. I cry. There is no comfort.
3:30pm Back home. I call a friend to pick up Nora and bring her home. I am so tired, so overwhelmed. I feel every emotion. I have never felt so alive. I realize I am desperate. I am desperate for my son's life, for my daughter's life, for my life, for Paul's life. I am desperate to save my family.
I see Sylvia. I am filled with an indescribable rage. I am cruel. I am mean. It doesn't matter. I am so angry at her. She got to cry in bed, to anyone who would listen for months, was it years? What was she crying about? A divorce from a man she didn't love? She didn't get the retirement or the house she wanted?
My child had stopped developing. What did it mean? It was not good. My genes may be bad. Nora may have those genes. Would others have those genes? I didn't want to know. I was angry. I would have gladly divorced my spouse - thrown everything away - to save Jack, to save Nora. I wanted privacy, I wanted Paul. I wanted to scream. I did scream. I was going crazy. I wanted to be strong. But I could hardlly breathe.
6:30pm I took Nora to soccer. Took Jack with me. Sylvia was weak. I had hurt her. I realized it was easy for me to hurt others. I myself was so hurt, so damaged - nothing anyone could say back to me would hurt me. I was so hurt, so damaged - I was dangerous. I was alone. I needed Paul. He was not there. The only strength I had was my own. It was not enough.
It is too painful to write about the rest of the day, the night. My world was gone. I looked through photos. I felt I had lost everything. There was old Jack, old Kara, old Nora, old Paul. I wanted to time travel. I wanted to grab them back. Tell them how much I loved them, how good they were. I missed them so much. They were ghosts. I had to find new Jack, new Nora, new Kara, new Paul. I had to find them, help them, save us. I made plans to visit a school for Jack the next morning. I would find the best care for Jack. I would find it, I would do it. My whole life had prepared me for this moment. I was strong. I would be strong. I would save my son. I would show my daughter strength, grace, compassion, wisdom. I would teach both children. I would save my family. I had failed today. I would do better tomorrow.
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