Living By Faith

Written 9-17-10
I had an interesting day. I'm out of town doing a 2 day staff development training for an elementary school out of town. Yesterday, during dismissal, I asked a teacher if they had any students with DS. As I was asking more questions, she pointed “Jay” (I’m not using his real name) out as he was being escorted thru the building to catch his ride home. As I saw him awkwardly lifting his floppy ankles and holding on tight to the teacher that walked in front of him, my heart sank. He was thin and looked like I imagine Levi looking when he is that age. I wondered how much help my little guy will need in the future. I fought back tears as I walked out to my rental car.

This morning, my first stop was Jay’s classroom. I asked the teacher, “Can he read? What are his parent’s like? Do they push him to work hard? Does he go into the other classes with the other kids his age? What kind of therapies does he get and for how long?”

The parents baby him, and always ask this teacher if the work she is giving him is too hard. His last teacher (at another school) told the parents he wouldn’t be able to read, so no one bothered to try. But the teacher I was talking to taught him how to read last year, and the parents like her so much, they kept him with her another year, even though he should be in a 4th grade self-contained room.

Why self-contained? I don’t know. I don’t think could’ve calmly had that conversation or asked about it without sounding mad, so I didn’t ask. (Remember it is first thing in the morning & I am about to do a 5 hour training for these people- I need them to like me).

He only gets 50 minutes a week of therapy. He has done so well, he doesn’t need as much as he used to. So here is something to think about…Is he doing so well because of the therapy he was getting? And if so, shouldn’t it be continued? What is wrong with being proactive? Is this a money issue? Are the parents making up for the lack of in-school therapy by doing things with him at home?

I went to Jay’s desk to say hello. He stuck out his hand to shake and told me his name. Such a sweet boy. Then I realized I needed to get to the library to get ready for my presentation. We were doing a Bully-free inservice, but, boy, did I wish we were doing an inclusion inservice!

At lunchtime, I went to the cafeteria because I was told the special ed kids eat with everyone else. Well, they were in the same room, but they were NOT sitting with the other children. There was even a row of empty tables between these kids and the others. Grrrr…

Anyway, what was reinforced to me is what I’ve been reading about the past few days (and yesterday’s conversations with another mama)…parents have a HUGE influence on what their child with DS achieves. I recently read about a young man with DS that has is driver’s license. How big is that?!?!?

SOOO…after lunch, when I gave the teachers an activity to do, this teacher sitting near me says he has a question. He asked, “How did you find out your baby had Down syndrome?” After I went through our crazy experience during Levi’s first week, he said, “Well, I heard you say that you didn’t get the prenatal testing b/c it didn’t matter to you, but my wife has “that trait,” and it does matter to us. I thought, WHAT?!?!? Why would you tell me that? You think my kid isn’t good enough to live?” I stopped talking to him, stood up, and said to the teachers, “Okay, back to page 95 in your workbooks” and started right back to the seminar. I did not want to talk to him anymore.

After I dismissed for the day, I thought I needed to be fair, and was dying of curiosity, so I asked him, “What did you mean about your wife’s “trait” and it mattering to you? His eyes immediately turned red & watery , and he told me about his daughter born at 24 weeks. She did not make it. She had DS. They were told they had a high risk of having another child with it, but have since had a girl, then a boy, neither of which have DS (I always abbreviate that to save time, by the way). They did the prenatal testing for both of these children and knew ahead of time that they did not have “the trait” (as he referred to it- he never would say the dreaded words Down syndrome). He said it didn’t matter to his wife and she still would’ve wanted the child, but he didn’t think he could handle it. They were told if the boy had it, it would be very severe. I have no idea how a doctor could tell that, but this man said it would’ve been so bad the child would need to be institutionalized. I thought, man, I need to educate this guy! Is he in the dark ages? We had a really good talk about the first part of this post (parents making the difference), and I told him I didn’t see any reason for ANY child with DS to be institutionalized…EVER. I still can’t believe I had to have that conversation with someone living in 2010!

Which leads me to another story…I was searching online the other day for IQ ranges for DS (just curious and wondering how much influence we can have over that) and stumbled on to someone’s blog. Her opinion is that if a woman finds out her child will have Down syndrome, she should not get any help from the government to pay for the child’s therapies or other special needs. It is her fault for bringing the child into the world and she should pay for it. I am wording this very nicely compared to the blog, and the people that commented had even more hateful things to say. Basically they think everyone should get the screening and should terminate if they find out their child will have DS. Many made comments implying that any person with a low IQ is worthless. It was unreal. My conclusion is that those people are the ones with intelligence problems! They have no intelligence for compassion, and people like that are the ones the world needs less of. I wish I could shelter my sweet Levi from people like that and pray that he never encounters that kind of hate.