5:15 am I wake up early. I am still alone. So much to do, to take care of. I am glad Sylvia is leaving. I cannot speak to her. I am still to angry at her. I know I shouldn't be - but I am. She isn't strong, she isn't brave, she isn't take charge. Those are the things I need. I need strength - she takes from my strength. I don't have any to spare. I can't be with anyone who takes my strength away.
7:00am I get Nora ready. I get Jack ready. I get myself ready. We get ready to leave for our day. Sylvia avoids me. She is wise. There is nothing anyone can say to me. She says goodbye to Nora. Jack says goodbye to Sylvia. She doesn't hear him, she doesn't pay attention to him. I am furious. Again, I hear Jack say 'good-bye' to Sylvia and I see him wave at her. Twice! She missed it twice!!!! Does she not love him? Why doesn't she look at him? She never tried. She never tried. She is weak. You must be strong to know Jack, to love Jack. She is weak, she will never know Jack. My anger, my resentment grows. I am glad she will be gone when I get home.
9:10am Jack and I arrive in Edina at Partners in Excellence. It is an ugly building. It is right on a major road. There is a pathetic small little piece of grass with a small jungle gym. I am not surprised when I take the tour that they do not show me the outdoor area. The school is so sterile. The children are all so odd, so strange. And I know that I see Jack with a mother's love. I do not see him as others see him. I am being stretched, stretched. I know that these strange, odd children have parents. Parents who have gone through what I am going through now. Parents who are strong. I need to be strong. I love Jack. I love these children. I am proud of Jack, proud of these children, grateful for this school and for those who go into this profession. I smile at the children. I am strong for Jack. The school is strange. It is not like a daycare or preschool room. It is an open room. There is a large trampoline and swing in the middle. Jack's favorite activities. And Jack is happy. He is happy here. He is off with a therapist... he is laughing, he is having fun.
I am trying to learn. I am opening my eyes. I am understanding the therapy. I believe it will work. Yet it is so strange and foreign to me. The children each get there own cubes - yes - like my cube at work. They do drills all day long. Their days and routines are strange to me. It is not what I had imagined providing for my 2.5 year old. I will trust Dr. R. I cannot trust Kara - she has made too many mistakes already. I remind myself this is about Jack, this is not about Kara. I am learning more and more about ABA therapy. I want to make this happen for Jack. When can we start? Hope is back. I smile.
It is so far from home. But when can we start? Maybe we could move to Edina? That is a nice place to live? Maybe we can be happy? Yes - lets choose this school, let's live in Edina. We will be happy. It will be okay. When can we start? I learn that the school is expensive $55 a hour. I am quiet. I calculate in my head... I calculate... I calculate again....It is $2,200 a week. I want to go through my savings. I want to do it. I calculate the costs... It is $114K a year. I cannot afford it. I am told my insurance won't cover it. Hope is gone.
I am told of government insurance programs. The system is overloaded, resources are strained. 90 day options, 6 month options. I download forms, I read them, reread them, study the rules. I can make no sense of them. I call Paul. We will have to hire a lawyer. I know it. I am a CPA, I study contracts every day.... this is so much harder.
I am told I am so lucky to have identified something is wrong and to have my ASD before Jack turned 2.5. If I start treatment now - there is so much opportunity. But I can't start treatment. I can't afford it. I wish I was already on medicaid - then I would have access. But I'm not. We are falling through the cracks. I am swimming against a strong current. It is drowning me. I am haunted. Something is going seriously wrong with my child. I have a small window to make a difference. But it is locked. I cannot unlock the access to that window.... I need to find the key....The current is stronger, I swim harder.... but I am feeling so very tired, so tired.... I am in a rip-tide, I am being swept out to sea.
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