To experience the world through his senses

I got a call from the school today to pick up Superman. Someone pulled the fire alarm and he was terrified. When alarms go off, Superman hears a higher pitch than the rest of us do and it's physically painful for him. When it happened, his EA said he started to shake so badly that she had to wrap her arms around him to help him steady. She said his heart was beating fast and hard. He couldn't regulate himself after that and he was terrified. So she put special earphones on him which are used to block out a good chunk of outside stimuli and it helped. But I picked him up by 9:30am. He was a mess. I felt so bad for him.

But on a good note, a very dear friend of mine gave birth to her twin boys yesterday so we're going to go visit them at the hospital. Superman is excited because he's very close to my friend and his little sun rises and sets on her. She was at the birth of my daughter and I'm looking forward to meeting her two little guys and adding the bond of motherhood to the journey in our friendship.

How many hoops do I have to jump through?

I am really at a loss when it comes to the public school system. Maybe I should clarify, I am really at a loss when it comes to my son's particular school. He has been struggling just to get through the day. The deck is stacked against him and his anxiety is through the roof. I have had countless meetings, I've brought in his therapy team to advocate for him and I really thought that we were all on the same team.

But now I have found out that the school has witheld information on services that they provide that could have helped my son immensely. He only goes to school for the morning because he can't handle anything longer than that. They were offering zero support until I wrote a letter to the school and CC it to the superintendent. Then whaddya know, an EA appears. So now he's able to get through most mornings relatively well.

He's been diagnosed as having severe sensory dysfunctions and someone happened to mention to me that they have a sensory room at the school for kids like him. Really! That's news to me. He also has a form of autism but we're await the official diagnosis which require a lot more hoop jumping and it's a long walk to get to the end of that. In the mean time, my son throws up he's so stressed. He cries, he's tired, his stomach hurts. And yet they have an autism team that could put some techniques into place to help him through the day until we get the diagnosis in writing. But nope. Won't do it until they have that little piece of paper.

How do situations like this help our children? Why should he be expected to suffer like he does until they recieve a piece of paper. Any bit of help they've offered has happened only if I have provided it or I've kicked up enough fuss to make someone in some sort of position of authority make it happen.

I had an interesting talk today with another mother at the school. Her son has similar issues to mine and she's someone I really liked from the moment I met her. I found out today that they're moving next month because their son isn't getting the support from the school that he needs and the only way something gets done is if she goes to the super.

I worry about Superman and what he's up against. Why do we have to fight for help? Why don't people want to help our kids reach their full potential? If we faced situations like this at work, we wouldn't stand for it. And yet, for some reason some people feel that kids don't deserve that kind of respect. An environment where they feel secure, nutured, and confident to do their best. That's really heartbreaking to me.