I need communication help

ToastieSimons

DS1 is nonverbal.  He also lack the physical skills to sign. Up until recently we've been doing well with guessing and redirecting but with school and the constant stimulation there and their demands of him he's really gained a lot of cognitive skills.  And the tantrums have started.  They're completely out of frustration and lack of communication.  I couldn't imagine being him and wanting or needing something and having no way of communicating it.  

Today he had a total meltdown because he wanted to walk into the mulch and down the hill (it's a really steep hill that is covered in juniper bushes so we couldn't walk down and explore it) and I kept turning his gait trainer and moving him.  It ended up turning into a complete disaster because he wanted to walk into the gravel or down this steep hill and of course a walker doesn't go there.  After a few failed attempts at making him happy and a few more tantrums he had an epic meltdown. I lost it, yelled at him and hauled his butt inside and put him in the crib for a few.  When he got up I gave him a snack and he hate a HUGE amount.  

So maybe the tantrums were brought on by the fact that he was a bit hungry on top of not getting his way?  

We have a few minimal "signs" that he can use, like he crawls to his chair in the kitchen when he wants to eat.  But he's pulling to stand now and pulls everything off tables and counters and pulls up on our stove (which is old and he cannot be anywhere near when it's in use) so we've gated the kitchen off.  Sometimes if we have a snack container out he'll bring it to us to open, but he hands us lots of things that aren't snacks either.  

What is the basic start of communication?  We've tried some BASIC PECS, like a pic of two toys and he pics one, and he has zero interest in it and won't choose, he just turns away.

I've thought about downloading a speech app for the IPad and slowly introducing it.  But I'm at a loss.  Any suggestions?

ToastieSimons

-auntie- said:

ToastieSimons said:

DS1 is nonverbal.  He also lack the physical skills to sign. Up until recently we've been doing well with guessing and redirecting but with school and the constant stimulation there and their demands of him he's really gained a lot of cognitive skills.  And the tantrums have started.  They're completely out of frustration and lack of communication.  I couldn't imagine being him and wanting or needing something and having no way of communicating it.  

A lot of people make the assumption that tantrums are about in ability to speak, but I don't buy it entirely. But I think it's more a combination of communication deficits and inability to have one's way- even when one isn't entirely sure what it is one wants. A piece of this is about maturity and increased bandwidth which is developmentally appropriate. Unpleasant as this stage is, it is growth.

Today he had a total meltdown because he wanted to walk into the mulch and down the hill (it's a really steep hill that is covered in juniper bushes so we couldn't walk down and explore it) and I kept turning his gait trainer and moving him.  It ended up turning into a complete disaster because he wanted to walk into the gravel or down this steep hill and of course a walker doesn't go there.  After a few failed attempts at making him happy and a few more tantrums he had an epic meltdown. I lost it, yelled at him and hauled his butt inside and put him in the crib for a few.  When he got up I gave him a snack and he hate a HUGE amount.  

Ugh. Were you speaking with him when you turned him around? Did you present redirection as a safety issue even if you aren't certain he'd understand? How are his receptive language skills? 

I talk to him all the time, as in "we can't go down that hill we'll get hurt", "you're walker can't go in the gravel", "let's go find mommy's car".  At this point you cannot test his receptive language skills.  I *KNOW* he understands, I mean he knows to hand you things at times and if he sees something he likes he looks at you to make sure you see it too.  But if you ask "where's mommy?" he would never look for me. If you say "Ball" he wouldn't even look around for a ball, he would just stare at you.  If you say "Swing" (something he enjoys) he would just stare at you, he wouldn't exhibit any excitement.  But when we get outside and he sees the swing he will be excited because he knows he enjoys it.  If i were to show him a picture of him swinging he would just look at it and turn away.

I'm sorry you got sucked into the vortex of the tantrum. That feels awful all around. You'll get better at this; he will as well.

You are probably onto something with the hunger thing. Kids are much more prone to meltdowns if they're blood sugar is low or if they're thirsty. When I carpooled, I handed each kid in the car a bottle of water and some sort of snack. Since he can't effectively communicate a need for food and may not even realize he needs something (like a lot of kids this age) you might want to follow more of a snack schedule.

So maybe the tantrums were brought on by the fact that he was a bit hungry on top of not getting his way? 

That would be my guess. FWIW, the worst tantrum throwers I know were actually pretty verbal as toddlers and preschoolers. When calm they could tell you all kinds of stuff, they just lacked the self regulation to be OK when they weren't making real life match what was in their heads. 

We have a few minimal "signs" that he can use, like he crawls to his chair in the kitchen when he wants to eat.  But he's pulling to stand now and pulls everything off tables and counters and pulls up on our stove (which is old and he cannot be anywhere near when it's in use) so we've gated the kitchen off.  Sometimes if we have a snack container out he'll bring it to us to open, but he hands us lots of things that aren't snacks either.  

Scary times. 

What is the basic start of communication?  We've tried some BASIC PECS, like a pic of two toys and he pics one, and he has zero interest in it and won't choose, he just turns away.

What plan is in place around communicating at school? Would that protocol be useful at home? PECS makes sense but he may need rote instruction in how to use it. Are the picture cards his stuff or just generic Do2Learn clip art? Some kids initially need actual photographs of their stuff/them doing stuff to make the connection at first. What you could do is an ABA-like teaching of the PECS as the need arises to help him make the connection. Like if he wanted a snack- he wandered to the kitchen and you hand him the snack card so he associates it with what happens next. Slowly, you would require him to use the PECS card as his request.

The benefit to PECS is that you can build on it for schedule making which will help him understand what's ahead each day and ease transitions when that starts to be an issue. 

We've tried PECS with actual photos of the the things he sees on a daily basis, no clip art.  

I've thought about downloading a speech app for the IPad and slowly introducing it.  But I'm at a loss.  Any suggestions?

I would bring this up with the school team. How are they getting through the day communicationally. If he can't make his needs known without melting down, it's an educational need.

He's only at school for 2.5 hours.  Right now he chooses a center from 2 choices on the Ipad.  During snack they're using a switch that says "More snack please".  So they offer him the 2 choices I send and he picks one and they give him one piece.  When it's gone he hits the switch and gets another piece.  Speech therapy is still in the process of getting him to speak which I think is a great goal, but I don't know if it's realistic at this point.  He has horrible oral motor skills because of his tone.  He's very vocal and says lots of "babbabababa" and "yayayayayaya" but he's never said mama or dada or any other closed mouth consonant.  Is it realistic to be pushing a talker or some other alternative method of communication at this point?  It's just so hard, I think if he could show his receptive language skills then they may think he was ready to handle a more aggressive speech system.  But, since he responds to zero requests or commands or object recognition I'm so lost.

ETA we're also on our 3rd speech therapist since DS1 started school in June.  He had one from June-end of June, one for 8 weeks in August and now this one since beginning of September.  So I feel like as soon as we build a rapport with one and start making plans toward progress we get a new one and we start all over again.

JoJoGee

Toastie, what you are describing, as far as your sons school goes, sounds a lot like my daughters therapy program.  Or, at least how they started communicating in my daughters therapy program a year ago.  We had the advantage of sitting in on her therapy program for the first 5 months.  So, I picked up on some of what they were doing.  I tried to replicate it in our house, and I came up with 2 options.

The first option, I call the cheap option.  I got some cardboard, a sheet of velcro, and a laminator.  Then, I thought of situations in my household when Lily would have two options (play time, snack time, positioning, etc.).  I photographed the objects used in these options.  Then, I printed, laminated, and stuck a piece of velcro on the photos.  I put all the photos in a binder, and I covered the piece of cardboard with the other side of the velcro.  Then, we began presenting options to Lily at home.  We also tried incorporating a button, but we couldn't find one at a decent price (those things are way too expensive!).  So, instead, we taught her some basic signs.  She does a modified version of "More" and so if when she wanted more, we would model more, do hand over hand with her, and say the word.  Eventually, she caught on.  I don't know if your sons physical limitations would allow this kind of imitation.

Then, there is option two.  It's pricey, but I like it better.  And, that is to get an Ipad.  There are MANY AAC apps that you can use for free with basic, two selection screens.  Some of them already have the screens made up using the clipart pictures.  But, some of them, you can create the page yourself by taking pictures.  We use MyTalkTools, which allows you up to 20 cells for free (which is about 6 - 7 screens worth).

I'm not an expert, of course.  But, I'd be happy to share our experience with you more if you would like.  Just PM me.

ToastieSimons

JoJoGee said:

Toastie, what you are describing, as far as your sons school goes, sounds a lot like my daughters therapy program.  Or, at least how they started communicating in my daughters therapy program a year ago.  We had the advantage of sitting in on her therapy program for the first 5 months.  So, I picked up on some of what they were doing.  I tried to replicate it in our house, and I came up with 2 options.

The first option, I call the cheap option.  I got some cardboard, a sheet of velcro, and a laminator.  Then, I thought of situations in my household when Lily would have two options (play time, snack time, positioning, etc.).  I photographed the objects used in these options.  Then, I printed, laminated, and stuck a piece of velcro on the photos.  I put all the photos in a binder, and I covered the piece of cardboard with the other side of the velcro.  Then, we began presenting options to Lily at home.  We also tried incorporating a button, but we couldn't find one at a decent price (those things are way too expensive!).  So, instead, we taught her some basic signs.  She does a modified version of "More" and so if when she wanted more, we would model more, do hand over hand with her, and say the word.  Eventually, she caught on.  I don't know if your sons physical limitations would allow this kind of imitation.

Then, there is option two.  It's pricey, but I like it better.  And, that is to get an Ipad.  There are MANY AAC apps that you can use for free with basic, two selection screens.  Some of them already have the screens made up using the clipart pictures.  But, some of them, you can create the page yourself by taking pictures.  We use MyTalkTools, which allows you up to 20 cells for free (which is about 6 - 7 screens worth).

I'm not an expert, of course.  But, I'd be happy to share our experience with you more if you would like.  Just PM me.

We have an ipad.  My biggest issue is that he doesn't really point to anything.  Like when playing peekaboo barn he just swipes the screen.  Same with all our apps.  he just touches it till ti does something.

I think we're going to start with PECS and just do some basic laminated photos. One of him in his high chair and it says EAT, one of his sippy and DRINK, one of him in the swing with SWING, one of him in his walker and WALK, etc and just start assigning tasks to words.

JoJoGee

GL!

kcisthebombdotcom

An idea--if he can babble some of the easier sounds could you connect them to desired items? Communication doesn't necessarily need be the exact word. I had my kids make an "ah" sound when they wanted a drink and didn't have the words to say a drink approximation and were still struggling with signs.