Grasping for mercies

Twelve hours ago I entered a room in Mia's school. Waiting in this room was the advocate, elementary head of special education, speech and language pathologist, classroom teacher, and ESL teacher. I felt calm and ready to hand things over to God. The meeting began. They asked for a medical update. I explained that Mia's hematologist is an expert in beta thalassemia major. She is receiving exceptional care with him. I explained that he was concerned about her growth failure, and sent us to the endocrinologist. The endocrinologist felt Mia had a underlying syndrome. She saw genetics and genetics agreed that she likely had a syndrome. Russell Silver Syndrome. A pin drop could be heard in the room at that moment. I was not looking up to see individual faces, but saw writing by everyone. My advocate explained that this syndrome carries many of the symptoms we have been seeing with her, from the very slow eating, slow processing, learning difficulties. We reviewed the texting Mia had last June, which showed serious deficits in comprehension, memory, reading, and math. I explained she has difficulties with homework. I explained that she has difficulty understanding words and their meaning. For example, last week's homework required writing sentences from words studied in the week. One of these words was "hung". She understood she needed to write a sentence. The sentence she wrote, was "the boy hung his grandma" (not spelled correctly, but that wasn't the intention for this assignment). I did not gasp when I read the sentence (although wanted to) but asked what it meant. She said "you know, the boy, you know, made his arms like this" (making a hugging gesture). I was calm and collected. I told them I needed help for her. She already has so much up against her with thalassemia.

The speech therapist was the first to respond. She said she did some research into children's language acquisition when adopted internationally. Within 12 months, most children show catch up in the new language, with respect to comprehension. Expressive development typically follows receptive development. For Mia, it seems backwards. Her comprehension has always seemed further behind. She cautioned me that what she was sharing was for children adopted under age 2, not at age 5 like Mia. I reminded her that Hannah was adopted at almost 3, and within 3 months showed above age comprehension. I also reminded her that Mia was developmentally at a 3 year old level when adopted. The speech therapist said she would do some type of "trial" of speech therapy. This means that she would offer 2x30 minutes, for 6-8 weeks. After that time, we will reconvene. Maybe she is thinking that a little boost is what she needs. Maybe. Again, I was trying to be open minded and receptive.

When the classroom teacher gave feedback, she said, as she did at parent/teacher conferences, that she sees no issues in the classroom. She sees her perfectly fine. No.Issues.At.All. My advocate spoke up, and asked about her thoughts about the homework difficulties she has. He said maybe it's a memory issue then. I brought up that she is unable to state her phone number or address, despite working on this for the 2 years she was in kindergarten. The special education program head asked the teacher if she believed Mia has a disability. She emphatically said NO. My heart dropped. How can this be? What was I saying and why is she not hearing? Does she see the homework I send back to her with all of the notes on it documenting the struggle? The advocate asked if she needed to review information with Mia. She replied that she needed to review information with most of the first graders. My advocate spoke up and said that Mia is beginning to become aware of the differences between herself and other first graders. It is impacting her self esteem. The teacher countered, saying she sees nothing but confidence and participation in the classroom. Every single item we brought was minimized or dismissed. Again.

Mia's ESL teacher did show some visible signs of genuine concern. She was unaware Mia was still able to retell basic information like her address and phone number. I told her that every week the reading log asks the question, "the book I like best is_______ because_______". I explained that every single week the because is answered by "I like it". It is rote. There is no explanation about why she likes something. The speech therapist said to give her a choice to see if she can expand why she likes it. I will try that. But I cannot understand why at half way through the school year the classroom teacher feels this is typical. Clearly the other kids are expanding. Hannah can even answer "It funny" at age 3. The ESL teacher responded by saying she will try to add a third time a week with Mia. She wants me to document what I am seeing with her, and keep a log of these things. A very big mercy.

When it was clear that the teacher was unwilling to support any concerns whatsoever for Mia, my advocate spoke up. The testing completed by the school all suggests that her very poor skills are due to ESL. I believe the poor skills are what impacts what I see living with her. Doing homework with her. Parenting her. My advocate said we disagree with that finding that the scores were due to ESL, and request and independent evaluation to be paid for by the school. The school had no choice to agree. They are saying they have a contract neuropsychologist, and he could likely do it quickly. My immediate thought was that he could be biased since contracted by the school system. I have the choice to find an outside person. Although I said I would accept the contracted neuropsychologist, I am considering finding a neutral person without clear ties to the school. I am praying for guidance and wisdom with this decision.

The meeting did not go as I had hoped. I had hoped that with all of the homework errors documented, and with all of the medical issues, they would at least begin development of an IEP. Or even offer her a 504. None of this happened. The advocate told me that this year for Mia is lost. She will not likely get any specialized services. I need to prepare for this. And so, I am grasping for mercies. I know they are there. I have thought about it most of the day, as people texted, called, or emailed to let me know there were thinking of us, praying for us, hoping for the best. Mercy right there. The fact that my advocate quickly asked for an independent neuropsychological evaluation and it was agreed to is another mercy. I guess the school didn't have a choice since there were not going to back down from the "only 2 years of english" issue, but it is still a mercy. The fact that I remained calm, collected, and articulate through the meeting is another mercy. This is my child we are talking about. What she has endured in her short life is unreal. What they are doing to her is a huge injustice. Many kids have an IEP/504 based on beta thalassemia major alone. Mia doesn't. Yet I remained calm, and spoke my piece. I did not react in anger. Big mercy. The ESL teacher is really a remarkable person. I do trust her, and told her this. She is asking to work with me, on the concerns I recognize, and keep in communication with her. Mercy. Mercy. Mercy.

This journey is hard right now. My hopes in the process being salvaged are gone. There was no recognition that Mia has such a long, hard road in front of her. But I see glimpses of His light. I am making myself look at it. Grasping for it. Clinging to it. I know that He is there. He is leading. He will provide.