If I Could Know

Last week I began to get frustrated when I couldn't begin to understand what Seraphina was doing at school. It had been made clear in our individualized education plan that daily communication was necessary but I did not spell out WHAT I wanted to know and hear. Now I understand how important spelling it out is.

Thursday I sent a document that had some of the information I wanted communicated to me but did not include a comprehensive listing. I thought this might make the conversation at home easier. Though it had some information, I learned today its not acceptable and was given another document with some stars near the pictures of what Seraphina's day consisted of.

Never did I understand how much I would want to hear my child talk. Never did I understand what parents of non-verbal children went through and though I ache thinking about the fact I don't know what she is thinking, I am grateful. I am grateful for this opportunity to learn.

Today I sat and dried my hair after getting Serrie on the bus. Was she singing songs? What songs? Was she learning numbers? What numbers? Even in our typical preschool at Immaculate Conception, weekly updates were sent from teachers reviewing everything they did. These are kids that can talk, that can relay messages that can fill in the blanks and my child was home singing whatever song she heard on TV. What did she hear at school? Did they love her? Did she have a wet diaper? These questions often stopped me in my tracks. At Seraphina's school, while they were trying, it simply wasn't meeting my needs and so today as I dried my hair I decided it was time to speak up and make her voice heard. I would take my concerns to discussion.

I reached out to schedule our next meeting with my new case manager. I will say our first impression was not great as she was running late to our meeting and had to "put on her lipstick before having a meeting" and then she proceeded to do it in front of me. Now, I have NEVER been a case manager or a school teacher but I have lived with a school teacher for years and never once did I catch her putting on lipstick in front of a parent while noting that she had to do so before meetings. I have learned in the last day you cannot just call to talk about your child. I suppose its legal semantics and now I understand why. EVERYTHING must be documented. So I decided I wanted to set up a meeting to voice my concerns about communication and my expectations. I also wanted to schedule our meeting that was indicated on the original document that was set to be six weeks from the beginning of school. I want to know what songs they sing. I want to know what letters they study. I want to know what they play? Why? Is it because I am a know it all parent? No. Its because I want to work with her. I want to sing those songs as we drive in the car. I want to make dinners with the letter of the week. I want to work on puzzles that study what she is doing in math. I want to get this child when she's young and help her grow. I want to be a team.

As a child with ASD, the time before age 5 is critical and though the pediatrician and developmental pediatrician have cited a full day program is necessary today I learned that the case manager feels doctors don't know what they are talking about. Her exact words were "leave the medicine to the doctors and the education to us". While I feel for her and understand where she is coming from, as a parent I see 2 years to get this child to a point where she can be in a classroom, on her own, without assistance. I see a big mountain that can be traversed but we are going to really get some blisters along the way. I am ready to dig in climbing chalk and all.

Today, I had a pit in my stomach. All day. Today, momma bear came out and not because I wanted to be "that mom" who was the squeaky wheel but because I want to be THAT MOM who can talk to her child, who can converse with her child and who understands her child. I wanted to be the mom I am to all my other kids and maybe that isn't possible but I will do everything in my power to give it a shot.

If I could know what she was thinking and hear her little voice I would do whatever I could to get her there. Until then, I will give whatever I can to try and be that voice that is currently just learning to speak.

If I knew what parents of special needs kids were going through in the past, perhaps I would have been a more kind soul. Perhaps this is karma and if it is, I accept it because it will just make me a better person.


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