Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, April 16, 2011

So, how's school going?

Axel just finished his third week of school. I don't know weather I'm more excited for him getting to go to school, finally, at 10 years old, or frustrated because of the school situation. Are you ready for an earful?

From reading my previous posts about Axel's first day of school where I went along with him, to his first day by himself, you know the transition was interesting, to say the least! I have had to go to school a few times, where I magically appear around a corner just when he happens to be acting up. It is very difficult to keep my "mad Mom face" on during these moments, because his eyes turn big as saucers, as if to say, "Where did SHE come from???" He instantly snaps into angel child mode like someone flipped a light switch. I wish I could get a video of it, cuz it's hilarious!

But Axel can't be blamed for all of the behavior problems. I KNOW he is very frustrated because he cannot communicate with the staff, and staff cannot communicate with him. Why? Because Axel's communication is 100% ASL. This is *just* a DCD class, and the staff doesn't even know basic sign. The child should not have to teach the staff! In their defense, this is not the fault of the staff. The problem is this is not an appropriate placement for Axel.

First of all, while Axel clearly has cognitive delays, they are mostly due to him never having been exposed to a learning environment, so nobody is really sure *exactly* where the cognitive delays lie. Even with the cognitive delays, Axel's primary diagnosis is Language impairment. He'd never been given a method of communication until joining our family, and while his communication is growing by leaps and bounds, without a FULL language he can't catch up cognitively.

The first two days when I went to school with Axel was like a slap in the face. I knew he was expanding his sign vocabulary exponentially every day, but I didn't realize until seeing him in a classroom full of people who could not communicate with him just how far he'd come. Here are my observations from his first two days in school. Keep in mind this was the first time the classroom staff had ever met him, and most kids who are in the DCD setting do not depend on sign and visual receptive communication anywhere near as much as he does. Why? Because Axel functions very much like a child who has a significant hearing loss.

  • Staff is not able to recognize when Axel is signing to them. Because language is so new to him, he does not understand that people have to be able to see him to know he's talking. However, even when staff is sitting right with him, they either do not notice that he is signing, or if they do see him, they don't know what he's saying because it's not something in their limited sign vocabulary. There were several times when I pointed out to the the staff that Axel was saying something, and countless other times when I didn't. One time I did was when Axel signed that he needed to go to the bathroom. He signed it several times in the direction of various adults in the room but nobody noticed. I finally spoke up for him. Communication is supposed to get him a response, but it can't happen when people don't know he's communicating.
  • Axel's sign vocabulary is already well beyond that of the classroom staff. Because of this, he will be missing many opportunities every day to new signs. One example is during their morning meeting time. The classroom teacher is not able to sign the numbers past 10 or 11, they counted by 1's, 2's, 5', 10's up to 122. As you know, a student learning to count needs to hear the numbers many times before they can do this on their own. Likewise, a student who signs need to see them just as often before they are able to sign them. The teacher counted money up to $1.22. (to match the number of school days thus far) Because the teacher does not know the signs for penny, dime, nickel, quarter, dollar, cents, etc. Axel did not have access to that vocabulary. I estimate that during that one hour block of time Axel would have been exposed to 50-60 signs he'd never seen before. If he saw them every day he'd be able to produce them after a few exposures. Staff was able to witness this today when I introduced the sign for "line up". Axel had never seen this sign before. I showed it to him twice, and showed him how to form it himself. Half an hour later, the music therapist told the 1st graders to "Go lineup", and Axel signed, "line up". He is very quick to put to use the signs that he's learned.
  • The staff and students in the classroom need name signs. Axel is not able to tell me about his day, or communicate his needs without knowing the names of the students and their name signs. He cannot say, "Where's Johnny", without having a name sign for "Johnny". This is also a safety issue. Everyone in the building needs a name sign. Axel will not otherwise be able to communicate issues of safety to anyone. As you know from our previous experience with Angela, it is crucial that a child be able to name a person in the event they have been harmed.
  • Phonics: We use Cued Speech at home as we're introducing phonics to Axel. I don't know if you've been able to view the video link I sent you two weeks ago, but Axel is already able to pick some letter sounds out of written words. Although he is not able to verbally produce the sounds, he is able to cue them. So far he can cue the sounds /s/, /v/, ee/ a/ f/ r/ b/p/m/ n/ and the word "the". He is learning to put these sounds together into consonant vowel pairs, and produce words such as "see", "van", "ran", "free". Also, I have recently discovered that when he cues simple words, such as "see", he is able to say the word quite clearly. (assuming they are sounds he can produce.) But when he signs the words, he has a lot of difficulty with pronouncing them. There is no staff in the classroom who is familiar with Cued Speech. Because of this, Axel will not be able to progress in his reading with the staff. Although he is beginning to read simple sentences such as "See the van", there is no staff in the room who would know what he is doing, and only one of those words is he able to produce verbally.
Those were just my communication based observations. I had many others relating to the social structure of the classroom, along with the fact the classroom was grossly understaffed without Axel in there. Add in a child who cannot communicate and is just learning about the world in general, and I finally had to say, "Axel will not be back in school until there is a 1:1 person for him."

Two days later there was another staff person added to the room.

In a formal letter to the district outlining my concerns for Axel in this setting, which I CC'd to the deaf/hard of hearing staff so they were aware just what my perspective is, I asked that someone familiar with communication needs of a student 100% on sign observe in the classroom. That would be the deaf/hard of hearing staff. 

After two days observations, the d/hoh staff agreed that Axel's communication needs are not being met in the classroom. He only has three more weeks in school before his surgery so we're going to keep him there until then, and will be having a meeting soon about his summer homebound services and his placement for fall. There is a full-immersion ASL DCD classroom in a neighboring district, which is where many of our d/hoh students go. That program uses both ASL and Cued Speech, and it would be ideal for Axel! He would get a FLUENT language model, both in ASL and spoken English, as well as cued speech for reading. 

In the meantime, every day I get annoyed by something related to school. I have to remind myself that they are still getting to know Axel. Still, it is clear to me that he is getting away with all kinds of crap, either because 1) they're avoiding conflict with him or 2) they're assuming he can't understand them. Here's an example: Axel has known how to write his first name for quite some time, and is working on his last name. He comes home with papers where he's clearly supposed to practice writing his name, but all that he's written is "A...A...A....A". He is getting away with NOT working on his name, instead doing what he wants and just writing the letter "A" over and over again. You know, cuz it's his favorite letter! I have told school that this is not acceptable, and he needs to do what he's told. Instead I get pages of A's.

This morning he was counting for me. (in ASL remember) and counted, "1....2....W....4". Ummm huh? Yeah, someone at school is counting with a W instead of an ASL 3. It's a common error for someone who doesn't know what they're doing. I sent an email to school, "Whoever is doing this needs to stop! The staff needs to know that if they don't know the sign for something they need to STOP right there and NOT continue instead of teaching him something incorrect." He also came home last week signing all the days of the week backward, something he's known for a couple of months...................sigh.........


JennyH said...

Sorry to hear how frustrating it is. Hopefully it all gets worked out before he goes back to school after surgery.

He is SO stinkin cute.

copperdog said...

What a challenge! Could you find an ASL interpreter to have at school with him? That would help Axel with more signs as well as the teachers being aware that he's communicating.

I went to college at RIT which has a huge deaf school integrated and not only did I learn some ASL, but every mainstreamed student had their own interpreter. Priceless!

Good luck :)

Leah S. said...

@copperdog, that is a good idea. The problem is a student has to be able to understand that what the interpreter is saying is actually coming from the teacher, or another student, etc. Axel is too new at learning language to understand this. I'm very familiar with RIT, I have several friends from the Cued Speech community who work there!