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!"

Thursday, January 13, 2011


Oh, I love this question from my friend "scarehaircare". She's in school right now and learning all about this stuff auditory stuff. She asks:

 "All the aural stuff going on with Axel is what I've learned or will be learning this semester. Interesting about the hearing screenings. Auditory Neuropathy sounds pretty textbook. I'll be interested to see what the audiologist comes up with during the sedated ABR. How is he for receptive language? Does he follow simple directions (does he know enough ASL for simple directions?) Does he show enough understanding? What about expressive language - does he utilize ASL to make his needs known? Love reading your adventures."

There are times throughout the day when he understands spoken directions such as, "drink your juice." or "go to the bathroom", or "lets take a bath". There are other days where he seems very confused if I only speak. If I use sign, no matter what, his receptive language skills are amazing! With whatever the processing problem is that he has, I cannot believe how well he's understanding us! 

His expressive language is coming. I have long lost count of how many signs he understands receptively. I think he's past understanding single signs. He's moved on to full phrases. His epxressive language is about where I would expect it to be. He has MANY single signs that he uses, and he's starting to put them together. He can sign phrases such as, "I love you". (he does NOT understand what it means yet. He knows we sign this at certain times of the day so he is repeating it.) "Good morning", "good night", "Help please zip/snap/tie", "more drink please". 

But he HAS reached another developmental milestone. When he wants something he doesn't know the sign for, he either makes up something with his hands, or he chooses the first sign that comes to mind. He also does this when we're trying to ask him a question we're not sure he understands. We know he doesn't because we might ask, "Do you like the noodles?" and he'll respond with, "baby", or "mama", or whatever else comes to mind. 

I have started working with him on MANY different things, such as recognizing colors, matching colors, recognizing numbers 0-9, and recognizing the letters in his name. When I brought him home, he had NO CONCEPT of matching. I mean, I swear I remember this being almost pre-programmed in my other kids. But with Axel, it was clear he'd never had this experience before. When I showed him a number 1-10 puzzle knob puzzle, where he's matching picture to picture, he had no clue what to do with it. Never mind turning the piece to get it into the hole! That was a whole additional day. LOL 

Now that he understands the concept of matching, I can use it for many other things! Yesterday I took out my three big mixing bowls (red, blue and white) and put a pile of chopped up pieces of paper at the one end of the basement and the bowls at the other. The game was to run (umm Axel doesn't "run". LOL) to the other end of the basement, grab a piece of paper, then bring it back to mama and the bowls. We signed the color together, then he had to put it in the matching bowl. We started with just red and blue. Once he was consistently matching those we added white. 

Once he was consistently labeling the colors himself, I changed the game. I put the red and blue papers in separate piles on one end of the room, and the bowls on the other. I sat by the papers and signed "blue", and he would have to figure out which was the blue pile, then take that paper and put it in the bowl at the other end of the room. This game was much more difficult for him, so he got frustrated easily. Once he was understanding what I wanted him to do, he got bored very quickly. That's when he intentionally started choosing incorrectly, looking at me with a grin and signing "wrong",  THEN choosing the correct one.........sigh......we should always end the game on a good note, right? 

He is now *just* starting to understand that numbers have a certain sequence. He can now sign, in order, 1 through 5 about 50% of the time. I think this is AMAZING!! 

As for functional communication, we're working on some specific things. Like, when he's getting dressed and needs help with fastening his pants, he does not just walk around the house with his pants undone indefinetly. He does now know he needs to ask for help, but he will follow you on your heels hoping you will just notice him and he won't have to say anything. This is very annoying when you're trying to get breakfast together and he's standing RIGHT behind you. If you turn around and say, "Do you need something?" he asks for help appropriately. The problem is that he doesn't understand that HE can initiate conversation. So today we did some role playing with Dean and I being in the bedroom with him and calling out, "Mama! Mama!" so that mama would come and help him. but we needed to back up because he couldn't say "Mama". He was saying it while we were still in country, but he's lost it somewhere along the way. 

Tonight he is saying "mama" with the sign!

He is also peeing standing up! He came to us peeing sitting down, but he'll be going to (my best guess at the moment) 3rd grade. Well Third Grade boys don't sit down to pee anymore. Also, Dean said that Axel is getting too old to bring into the women's room when out in public, but that sitting down in a public mens room is BAD! (He says they're very gross.) We've been trying for over a week to get him to stand up to pee, without any success. Finally yesterday I decided to flood the poor kid with liquids and he HAD to stand. If he didn't go in 5 minutes I had him try again later. Finally last night he asked Dean for the bathroom, and he peed standing up right away! Well, today was like starting all over and it took until tonight to get him to go again. LOL But he's getting it, and soon he'll be a regular stander! HA!

Oh, and he tries SO HARD to say Angela's name!!! Every day, if I tell him to get his shoes on, he signs Angela's name, wanting to know if we're going to pick her up, or if she will be wherever it is we're going. If I say, "No, no Angela", he gets a very disappointed look on his face. If I say "Yes, Angela will be there!" he gets SO excited!!! Oh, how he loves Angela. But, who knows when he will ever be able to say her name? Heck, it's only in the last year that others can understand her when she says it and she's 14! So I'm resorting to the nickname I hate, "Angie". The ONLY person who has ever called her Angie is her former swim coach who was set in his ways. But Axel can just about say "Angie", so we may just resort to that!

Other than that, most of his wants and needs are single-signed things, like "drink" if he's thirsty, or "more" if he wants more of whatever he has in front of him. 

I will update more tomorrow about some other stuff we (I) and working on, but for now, my eyes are trying to close! LOL


Anonymous said...

I'm sending Seth to you and Dean. I expect him to pee standing up when he returns home ;)

Difference2This1 said...

Gee Leah..reading your blog posts are just as educational as reading an early ed/early learning textbook! Thanks for saving me the time from having to go hunt one down before the boys get home :)

So, why is my 12 yr old/home 2 yrs child having the same "functional communication" issue that you describe above with Axel? It drives me absolutely nuts that she lurks around me (or Greg) forever without asking us to sign her homework (or things similar) when she is in her "funky behavior" states of mind. Sometimes we will glance at the clock to time how long she will follow us around holding her forder before she mumbles a "can you sign my mumble, mumble". Is "functional communication" a real term? How to you work on that???

Scarehaircare said...

wow! I can't over how quick he is coming along with his milestones. I wish I could attend his SLP sessions when they test him to see how far his communication skills have come.