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Daria

If you have a kid whose communication skills are very limited, can you help me brainstorm?

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This is a common issue, and it gets even more concerning when we realize they can't tell you abuse has happened, etc. My son is younger, so people still tell me everything that happened. Does this individual have AAC? Have they worked on things like telling about their day? I'm able to ask my ds questions and get things out of him.

 

I think in general they usually make behavior/feedback/communication forms for the day and the workers can fill that out. So maybe make something custom that addresses the mother's concerns and make it so it's super fast and easy to fill out. Like our behaviorist made us behavior data forms where we could just *circle* the most common answers from a field. I know I've seen forms like this online, like it's a common thing people do for communication between home and school for kids with less ability to communicate.

 

So the form could have a line that says "Today Suzy ate lunch..." and the options could be everything/loved it, part of it/half was yuck, minimal/sensory was all bad and it tasted gross. I'm just making that up. But that idea where the thing they want to communicate is there, the 4 most common options are already listed, and the worker just circles, boom. Takes minimal time, goes in her take home folder or whatever, and everybody's concerns can be addressed. I've seen these forms for going in, like a way for the parent to communicate how the morning started, and the worker continues with how school went, and then it goes back home. And you could put anything on it, like reporting how she enjoyed her day, how many attempts she made at such and such, what her favorite thing was, anything the parent wants to know or isn't feeling like she gets enough feedback on.

 

You could also have an end of day thing where she does something with an app and making pages about her day that her mom can see. But the paper slip would be so easy. Honestly, that to me doesn't seem so crazy for the mom to want to know. Assisted living notes what people eat and whether they're skipping. It's something she'd want to know. So just discrete noticing and communication...

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Does this person have any verbal ability at all?  Is this something being worked toward or is is it something that isn't possible?  What about signs?  Lots of little kids learn to sign before they learn to speak.  In fact, it helped DD7 when she was non verbal.  Even today, she still uses the sign for please when she says the word. 

 

Or what about a picture system?  Maybe in combination with the form otherwise mention.  So like you have a form to report what activities the person did, what they had for lunch etc...and then a series of pictures for the person to select that would be typical options.  For example, maybe you have pics of the typical lunch options like spaghetti, chicken nuggets, pizza, etc, whatever the common lunch items are at the school, and then that way the person can more or less fill the form out themselves, with the pics. 

 

One other thing you might consider is providing more detail about the schedule as far as when the person is with supervision and when he isn't.  So something like "today, the first two hours were spent with person XYZ doing ABC, then during the hour of free time, close supervision was not provided.  They were free to do X or Y or Z. 

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I'm already feeling uncomfortable talking about a specific kid, so I'll just say that he has some verbal skills, and that everyone is working hard on both increasing those verbal skills, and teaching him ways to augment his verbal skills, but those are challenging tasks.

 

I walk parents through the schedule pretty carefully.  So they know which classes their child has in which period, and how they're supported (e.g. special education class, general education class with an older peer mentor, general education class with natural peer supports), but I still think it can be hard for someone who has been out of the high school environment for a while to imagine what the day looks like.  

 

I feel like lunch is a little bit of a red herring, because it's not about solving the question of what he had for lunch.  That just happened to be the question that I got yesterday.  Tomorrow it will be something else.  

 

Hmmm...Ok...

 

Maybe try a tactic of letting the parent know that it's NORMAL for parents not to know what their kids had for lunch or how a red marker got on the kids hand.  I mean, sure the lack of verbal skills ads a bit of a wrench to the mix.....but I never asked DD22 what she had for lunch.  So maybe the key is, instead of having the kid help communicate, you are more focused on helping a mom deal with her kid becoming more independant....it's a struggle for all moms. 

 

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If he can read enough, he could fill out his own reports. I agree, if the mom is asking about random things that are not consistent and not about safety or academics, it would be hard to have answers. Not to be trite, but she may need to see a counselor. She also might like to volunteer at the school so she's more in the loop on sort of the vibe and what's happening. Might put her more at ease. So the volunteering was my first thought and the counseling is just reality. I think it would be way common, normal, WAY more common than people would realize, for someone in that position to benefit from talking with a counselor, someone who has experience with families with autism. If there's a way to suggest it without sounding trite or flippant, it actually would help.

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Yeah, if you're a teacher, that's awkward. Maybe hook her up with another mother who has btdt? Do you have a parent ombudsman? Some schools have funding for that, a paid person who goes between the school and parents to help them understand things. 

 

Does this student do something like Zones check-ins? That would be another way to gather data from him where the mother could see yeah, he was really in good spirits. Some of that stuff you worry about would show up in the zones, so it would be a simplified way of catching it. Like he comes back from lunch and he's red zone, why is he red zone... And she'd see oh his page for the day showed green and yellow all day... I don't know, just brainstorming.

 

Have you brought it up with his IEP team? 

Edited by PeterPan

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Your choices and flexibility seem very good! Fwiw, I think I'd be worried about my ds in that setting, and he IS verbal. I'd be worried simply because I care so much, kwim? Like I would know in my head he was fine, and it would still be there. 

Edited by PeterPan
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Your choices and flexibility seem very good! Fwiw, I think I'd be worried about my ds in that setting, and he IS verbal. I'd be worried simply because I care so much, kwim? Like I would know in my head he was fine, and it would still be there. 

 

Of course, worrying is natural, and worrying when a child's ability to explain their day is limited is more natural.  I don't expect to convince the parent not to worry, I'm just hoping that I can figure out some strategies to make things a little easier for her, and for her son who definitely picks up on the fact that his mother is sad.  

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First of all, you are awesome for wanting to help her with this. What she's going through is completely normal for a parent who's had to be intensely, abnormally involved in their child's life for many years, then suddenly has to step back. She's celebrating, but she's sad because the kind of relationship dynamic she's had with her son and the school since preschool has come to an abrupt end. Perhaps indirectly, it seems like she is trusting you to give her the leeway she needs to be sad. Certainly most of the other people around her won't understand what she's going through. My suggestion is this: Assuming she knows that her son acts differently when she's around, and that she wants to avoid that, maybe she can spend some time at the school casually shadowing other kids? Maybe sit in on classes her son takes during different periods or eat lunch in the cafeteria when her son won't be in there? Maybe Mom would appreciate getting more comfortable with "wide open spaces" too. 

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I think this is a normal and understandable anxiety, that other parents feel when their kids are in Kindergarten.  But Kindergarten is still a very protected, watched-over environment. 

 

So other parents get this gradually and over time, and are able to see that their kids start in a protected environment with everyone looking out for the little K'ers and Firsties, and then when it's second grade and kids aren't watched over the same way, the parents have had a chance to see that their kids are ready for it.

 

It's slow and gradual, with little bits of independence added over time, and the ratios lowering over time, and supervision lowering over time. 

 

But then I have that and I will feel like ----- it's so sudden, and I can't think of any other experiences where it went well. 

 

This is the difference for me between my kids, and it is a big difference.  I am comfortable with things my other kids do because it's part of a progression they have been part of, they haven't been thrown to the wolves (I feel like this, lol). 

 

Something I would suggest, because I'm doing it right now and it is really helpful for me in seeing my son be able to be very capable, and being able to see how other children treat him, is that my son is taking a gymnastics class.  It's his first time to take a regular class and not have an aide. 

 

However I can watch him!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 

 

So I can actually see how he is doing, and how he can handle some little things that come up, and how he is treated by other kids.  So then I can think "this is probably how he is at school." 

 

But it helps a lot for me that I can actually see him. 

 

But he doesn't do anything alone at school, and I am sure it will be hard for me.  Before we moved he did walk in the school building by himself, which I wanted for him for independence, but I had a very high level of trust with that school and my son had siblings there, and it was an elementary school.  Also my son was very known at that school and if there was any problem, anyone in the school would know my son and help him. 

 

When I see my older son's middle school, the kids are expected to be much more self-sufficient compared to in an elementary school, and it would be a lot harder for me then, I think. 

 

I think something that would help is if you can say that people were around in general and would have noticed a problem if there was a problem.  If that is the case, if there is staff in the cafeteria in general and they're just not staying right by her and really monitoring her, but they are aware enough to notice if there is a problem.  That would go a long way for me, if I thought my child was generally pretty known to the staff.

 

What I have noticed where I live now compared to where I used to live, I would say my son here is very known to all the special education staff.  But throughout the building?  Not so much.  And mainly I think that's just because it is a large school.  Also, he doesn't attend with his siblings.  At our old school, it was a smaller school, and the front office staff and staff who did bus duty etc. would just know all the kids by name, and they would all know my son.  And then he was known also as the sibling to my other kids.  That whole school did a good job of learning the names of special needs kids and using their names anywhere in the building, like they made a point of it, from very early in the year.  Here I feel more like -- I'm sure the librarian who does his class's story time knows him, but does the other librarian have any idea who he is?  I doubt it.  And it does make a difference to me.

 

But at the school here they have installed internal locking doors and so they can't have kids go from one part of the school to another by themselves, so that isn't an option here (other than within the same hallway, which is something). 

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I think for me, there are other situations where my son hasn't had an aide but I have still been able to get a thorough accounting, and that also builds my confidence.

 

So maybe:  church, a birthday party, an outing, a playdate..... anything like this that doesn't have an aide, and doesn't have that level of help/supervision, but that is still something where as a parent we CAN get a lot of detail ------- for me, to be able to have solid proof of success with things like this, would give me a lot of confidence. 

 

My son recently has been doing a little more in church, and it is partly because I have gotten my confidence up from school, from knowing he is doing well in school.  And then that gave me some confidence to try the gymnastics class.  And then that helped give me some more confidence for church.

 

If there's any activities outside of school that might be possible now with the developmental leaps, I think that could help, because it is possible to know more as a parent, because it's just more possible to speak to people at pick-up and drop-off, and it can be smaller to where adults can keep more track without having hovered. 

 

Or maybe even an activity where she can go and watch, but not need an aide.  That is really helping me, I had major anxiety prior to the first time I took him, and just seeing how he does first-hand is what alleviates it. 

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Also it's strange from thinking a child "can't" do things to thinking they "can."  There might be some activities that the mom has not thought of in years, because it was always in the "no" category.  If those same activities are moving into "yes," maybe you can help her think of possibilities that you think would go well based on what you see at school.  That is something that has helped me from school, because it is harder for me to have a sense of it sometimes. 

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Another thought is if you think she socializes with anyone at lunch, or sits with anyone, could you help to encourage friendships or get contact information, so the mom could invite kids over for a movie or something? 

 

Then she could see how she is doing first hand, also. 

 

I think it's a glimpse of how our kids act around other people, too. 

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I re-read and I think it sounds like the mom does think things are fine, but then she also has an emotional response.

 

My emotional responses sometimes are about just my son having autism and things being different for him.

 

Or I did feel this way when my oldest son went to Kindergarten. He skinned his knee once at recess and it was fine but nobody saw it happen. At pre-school someone would have seen it happen. I would feel this way! It took me a lot of Kindergarten having this kind of conversation with the Kindergarten teacher. But Kindergarten teachers are used to it! I think they have a couple of parents every year probably, I’m not the only one like this. But I did feel like I was sending my little baby into the cold harsh world, while at the same time I knew he was okay and in a caring, positive environment.

 

I think for me a mix of just factual information “here are the pros, here are the cons†and then reassurance that my son was doing okay and if there were a problem someone would notice and do something, including peers if there are older kids who would be helpful.

 

I think I have an idea from my daughter, that there are things she would do to help another student, who was having some problem — at least she would get a teacher! That gives me confidence with knowing other students would be helpful, too.

 

If there’s any example of peers helping peers, that might be commonplace to you, the parent might not be aware. I have conversations like that sometimes where I just know from my other kids — a kid would help or at minimum tell a teacher for a lot of things. And I have talked to other parents about not feeling nervous about some of those things.

 

But some parents are not in the loop of how self-sufficient and helpful many kids are! They aren’t in the loop and I think it makes a big difference in them feeling comfortable when there are kids around but not an adult.

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Also with inclusion it’s better than what I would see growing up, as far as peers. I agree with pp that might be helpful for the parent to see even with other kids.

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Oh, and this is something I have not done, I think it would only feed my anxiety, but I know sometimes teachers will text a parent that everything is going well.

 

More general things like that — posting pictures on a class website. My daughter’s teacher does Class Dojo.

 

My son had a summer program with a Facebook page.

 

Being able to look through just group pictures and find him and seeing him looking good really helped me a lot.

 

I don’t know what your options are that way, but if you’re allowed to share class pictures in some way, then being able to see pictures where the boy is doing well AND he’s not by an aide might help. That gave me a lot of confidence with the summer program.

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I’m realizing with this, I would really struggle with this if I didn’t have an older child. This is stuff that was hard for me even without the lack of ability to talk about the day! I don’t know how I would do it. Really I think the mom might be holding it together pretty well for such a big change. It is a big change and I do not come to terms with big changes in a short time, it takes me a while. So I do think there is a balance where maybe you can help her build her confidence, but also, it’s a big change and it will just take some time to adjust.

 

I think if you think how when your oldest kid was very young, older kids seemed impossibly mature and it seemed amazing they could take care of things ———— this parent might not have experiences of kids being responsible and mature, and I think it does make them less secure with a community of kids and more reliant on adults.

 

Where I think — sure there are places I think kids tend toward their worst instincts, but there are plenty of places where kids tend toward their best instincts and have a lot of ability to do various things, that a person who hasn’t been around kids that age very much, just might not realize they are capable of. It’s hard to explain but I have talked to special needs parents before who don’t have any idea how responsible and mature a typical 4th grader or 6th grader is, and how they can take a lot of initiative or know right and wrong and when to get a teacher. They have just missed out on that and they think of them like large little kids in some ways, just from a lack of exposure.

 

Edit: and I would be like this — I am a parent who, when my oldest was in K/1st would be very disturbed by how much less supervision older kids in the same school would have. I didn’t understand it was appropriate for them. I would really feel like —— I can’t believe it! And it would just be stuff like an older kid being a line leader to get on the bus and no adult staff around. Where now I think — well of course an older kid is capable of seeing their bus and getting on the bus without adult supervision. And my idea of “around†has changed, because now I would see “well yeah there is an adult keeping an eye on things†but before I felt like it was not enough supervision, because I didn’t understand that older kids honestly didn’t need it.

Edited by Lecka

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Lecka,

 

You've given me lots to think about!  I will reply later in more detail, but I just wanted to say that this isn't a high school freshman.   We didn't just take the kid and throw him in the deep end of high school.  We've gradually built up to the point he's at now, and of course we'll continue building. 

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