Posted 2014-10-03T01:59:26Z

One thing after another

On Monday September 21, we met with Emma and Daniel's new pediatrician. She is amazing. We believe we are in very good hands with her, which is reassuring as we were really scared of switching providers.

The meeting was productive, not only because we spoke about Emma and getting her care transferred, but also because we had communication from Daniel's school telling us of some concerns that they were having about him. We ended up having a follow up appointment for Daniel this week.

It came about because I contacted his teacher after picking him up several days in a row to find him playing by himself, and with some scratches on his face. Adam and I were naturally concerned, and wanted to make sure we were doing whatever we could to make the preschool transition as easy for him as possible.

The response was in depth and honest, and as heartbreaking as it was informative.

Daniel's teachers had noticed that when Daniel gets upset, he crawls under chairs, tables, on cubbies, or lays on his side and scoots around on the rug rather than participating in classroom activities. When he becomes unhappy is tends to be triggered by loud noises of other children crying or when other children express excitement verbally. When it happens, he grabs for his ears, and appears highly sensitive to the sounds, scratching at his face in the process.

He does not respond to his name, or to questions that they ask of him, and makes limited eye contact.

He goes to teachers when he is upset or hears a loud noise, but when given opportunities in the classroom, he generally chooses to play with trains or cars on the floor by himself rather than with his peers.

Adam and I went to meet with his teachers, and had a great discussion. I am heartened by their interest in helping him integrate with his peers. It really forced us to think about our own experiences with Daniel, and be honest with ourselves. He makes good eye contact with us, but no, he doesn't respond to his name, and no, he doesn't respond to simple commands or questions.

Further, he has an extensive vocabulary, but is unable to communicate his needs. He doesn't say Mama, Dada, Bottle, Food, Up, Down, All Done, Milk, etc, but he can recite lines of nursery rhymes (albeit in "baby" speak).

Daniel is so far advanced of Emma that we had not been too concerned about his development, thinking he may just be a little behind. I had the opportunity to spend some time with Daniel and his classmates, and realized just how far behind he is. Where his peers are able to answer simple questions, and recognize one another (calling out "Hi Daniel" as he enters the classroom), Daniel is still learning.

So what does this mean? Well, it's concerning enough that our new pediatrician spoke with our geneticist and has decided that the best course of action is to run a barrage of tests on Daniel. Starting next Friday, October 10, with an MRI of his brain. Following that we will be having an assessment with a speech pathologist, an audiology test, an autism spectrum test, and the ever terrifying genetic tests. I have been asked to have a liver and kidney ultrasound along with a blood test for creatine kinase - Emma's levels were elevated, and can indicate muscle or heart damage. The doctors would like to work out if this too is genetic.

In the meantime we try to stay positive, although secretly preparing myself for the worst. Why? Because I wasn't prepared for there to be ANYTHING wrong with Emma, and I felt like I had been hit by a ton of bricks followed by another ton of bricks. It took me a good week to come out of hiding and start to think about getting my emotions under control. I can't leave myself that vulnerable again.

Through it all I keep remembering how amazing my little Emma is. Even though she doesn't understand receptive communication, and has very little expressive communication, she is teaching herself how to let us know certain things. The other day, she brought me her hairbrush, held it to her head, and backed up against me indicating she would like me to brush her hair. Almost immediately after she brought me her therapy chair, touched my leg, then backed up against me again so that I would put her in her chair. Yesterday, after her therapy session and as her therapist was leaving, she went and got her shoes and gave them to my parents. They quickly put them on her and took her out for a walk, to reinforce her actions. It reminded me of just how clever she is being with the abilities that she has. She has figured all this out herself, and is amazing. It reminded me of that Albert Einstein quote about fish and trees: