Saturday, August 31, 2013

Where we are

August is always a tough month for us and I really needed to take a break. I have disappointed myself in a lot of ways lately, but I have taken time to reflect on those things, set them down, and use them as a stepping stool moving forward. A mom of children with special needs really can't win. There is always more that you could have done, a therapy that you didn't try, a parents meeting that you couldn't squeeze in, special ed law books that you didn't yet finish, and on and on.

I'm learning how to deal with where we are.

Here is where we are:

Zhen is a mess. He NEEDS to be making noise constantly at school. He doesn't want to do his work. He does every little thing he knows to annoy anyone in his path. He is also being treated for a certain difficult type of infection. I'm wondering how much the medication is affecting him. I would LOVE to blame the medication, don't you know.

He has learned to say one word really well. "Bye."

Theo is a mess. His medication has helped him tremendously with impulse control, but he still can't resist matter what is floating in it, if you KWIM. He finally started school last week and LOVES it! Theo and Max attend school in a completely different district, not by my choice. The two districts calendars do not line up well. They started two full weeks after my other kids.

He still has no words.

Ralph is making great progress. He started kindergarten a few weeks ago and after a few bumpy days, he seems to be settling in. After stuffing his hearing aids down the storm drain on the playground, I was a bit worried. Most of his school day is spent in an inclusive setting. He is pulled out for math instruction and writing. Can you believe that he can't hold a pencil? I was so busy teaching him letters and sounds that I forgot to teach him how to write? Now here we are. He reads sight words with me every night. That is my consolation.

Speech is so difficult for Ralph, but that doesn't keep him from trying. He is getting better every single day. We just have to remember to insist that he says things the correct way, even when we understand what he is trying to say.

Finally, Max. Max is a total sweetheart. He is sharp. He learns so fast and is SO easy to care for. He is wise in ways that you would not expect for such a tiny guy. He IS almost nine years old, after all. He is loving school, especially riding on the big bus. I hear that people are getting him mixed up with Theo. I don't think they look anything alike, so I don't get it.

Max on the left and Theo on the right. First day of school.

Recently I found that he is basically blind in his right eye. His eyes have been crossed too long, likely a problem that just got worse from staring at crib bars for years. The brain can't handle two different images at once, so it just ignores one eye...eventually shutting that one eye down altogether. Receiving this information was crushing to me. It's one of the reasons I have not been able to write.

You see, I was contacted by a family that wanted to adopt Max in 2010. Three years ago, at the age of six, his vision would not have been fully developed. The eye doctor told me that now there is almost no chance that we will be able to recover any sight in his right eye. At his age, his vision is fully developed. Three years ago, he almost certainly would have had the chance to see normally. Just think, what if something happened to his good eye now? He would be blind.
See? He is focused on me with his left eye, and the right eye turns in. He's not using it.

Three years ago, surely his teeth were not rotting out of his head...or at least perhaps he wasn't suffering the sort of pain that interfered with his ability to eat. He certainly couldn't have been much smaller than he is now.

Three years ago he was likely not covered in molluscum like he was when I met him. How did he get molluscum on his butt? Do I even want to know? Three fewer years of neglect. Three fewer years of abuse. How I wish I could have spared him those three extra years without a family.

One person could have spared him those three years...


Melissa said...

I don't think the boys look alike. They both are blonde but that's it. I prayed and prayed for someone to come for Maxim for so long. I'm so sorry, that damage has been done to him like this. I will never forget seeing that video of him that the missionary made. I just cried and cried. I so wish he had been adopted sooner:)

Jill said...

I'm so very sorry to hear about Max's eye. So very sorry to hear about what happened 3 years ago and that he has suffered since then. :(

Thanks for the update on the other boys too. Can't imagine what a pain it is to have those 2 in a different district.

For what it's worth, I get asked often if Elijah and Jonathan are twins (when they are in the stroller). WHAT?!?!, they are 3 years apart. Just 'cuz they both have the almond eyes, that makes them twins? Whatever. lol