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S/o Help with Sensitive Wording with Parents of Special Needs Kids


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I mentioned in the other thread that I sometimes help in a special needs Sunday School class.  I sometimes feel like I have said something inappropriate without meaning to. I really try not to hurt people's feelings, but I don't always know the correct way to say things.  Even now, looking at my title, I wonder if special needs is an ok term.

 

For instance, if a parent is dropping off a child that I have never met, how do I ask the parent what the special need is?  And how do I ask about accommodations?  

 

Most of the kids who come to the class have autism, but autism has so many different facets to it, I don't even know what questions to ask.

 

Usually there is a much more informed person who is in charge of the class, but last month I was the one in charge because she wasn't able to be there.  I felt very ill-equipped, as two of the students I had never met before.

 

I'm hoping that some of you can help me to know what questions I should be asking and how I should be asking them.

 

Thank you!  :)

 

 

 

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I was struck by this program your church is offering when you mentioned it.  I wondered if it was a large church, and I wondered if there's pressure to use the class, meaning people aren't welcome to leave their SN dc in the other classes if they want them mainstreamed?  Like oh, he wets, go here where the people are expecting that, kwim?  But that's just an aside, as overall I thought it was neat that they were making the attempt.  I think it's good for kids to experience a broad range of people.  I assume they do it partly because it allows more appropriate instruction.

 

Anyways, not having been to a program like that, I would think it would be your normal questions with a new child: any food allergies, any special instructions...  Some big churches now have beepers for kids, so if they do that for all the kids then that eliminates the question of how you contact the parents if there's a problem.  

 

I agree that's a little uncomfortable that they expected you to work there with no training.  Many churches now have abuse prevention training before you can work with children.  You could discuss with the head of the program what training you could find or create for this.  There's probably already something out there.  

 

The people who struggle with my ds tend to be very critical or expecting things.  I don't think they'd even ask a person like that to work in a room with SN kids.  I'm just saying that's the time that things most get crunchy, when the person is really demanding or dogmatic.  As long as you keep cool and are confident and loving, things usually are going to be ok.  And when I see a person who's in that state, that tells me they're going to respond ok to unusual things.  Like when I leave my ds for 2 hours with his gymnastics coach for gymnastics class, I don't worry about how the coach will react to whatever odd thing ds does, because I know that coach has the right thought process for how he handles things, kwim?  And I don't just leave my ds with anyone, kwim?  My ds wet on himself last session (the exercises set off a retained primitive reflex, it was involuntary), and that coach totally had it under control.  When I talked with him, his concern was ONLY that the boys not pick on him or even notice if possible.  THAT'S the right thought process.  Someone with more ego would have been flipping out about why is he in here, I can't take a boy with that issue to a meet (this is a competitive team), I'm not a babysitter, blah blah.  Seriously, that's what I figured would happen.  Nope, totally cool, more concerned about the emotional state of my boy and how to take care of him than himself.  That's a gift, a gift to me and a gift to my ds.  

 

Sigh.  So you're doing a good work.  I don't think the parents expect perfection or expect you to know everything.  I think the calm demeanor and going in willing to show love and stay calm and handle it is enough.  I think making sure you have contact info and knowledge of anything serious or life-threatening is good.  Like when I leave my ds with someone, I'll mention to him "You can ask to go to the bathroom" on the way in so the worker hears so they know his ability to self-advocate is sometimes low and to keep it on their radar.  

 

Well you've intrigued me.  Now I'm curious to scope around and see what other churches in our area have SN programs.  My ds should be mainstreamed (per the psych), but still it's intriguing.  I've heard stories of disaster where the SN dc was taught by someone who needed more sensitivity on SN and offended the dc.  Unfortunately, with some of our kids something can get stuck in their minds and be stuck there very strongly for a long time!  So as a parent, as we're nearing these years where things change from nursery style into more teaching with more expectations, I'm getting really picky about who he's with.  I'd rather he sat in the service than to be in with a teacher who can't handle him.  But you know that's the same thing I'd do with ANY dc.  I pulled my dd out of a program because the teacher made a really inappropriate remark.  It wasn't in the realm of a mistake but was something that indicated their character and ability to problem solve was too far off, so that was the end of that.  That's why I'm saying, I find the character of the person, the ability to stay calm, problem solve, and show love is more useful than about anything else.  How to do that and be firm and maintain order, hehe, that's a trick.  :)

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Thank you, OhElizabeth.

 

Other than food allergies and bathroom issues, is there anything else I should be asking about?  

 

For instance, last week I had two children I had never met.  When I greeted one of them (as he was being dropped off by his dad) I asked him a question (I think "How old are you."  At that point the dad said, "Oh.  He's non-verbal."

 

This is the type of thing that I would not have known to ask or how to ask.  It would seem kind of rude (to me) to ask every parent, "Is he verbal?"  Obviously, this is something I would need to know, but I wouldn't know when or how to ask.

 

It sounds like I need to have a talk with the group leader about how situations like this should be handled.

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Tough position. Would filling out a very brief index card size form help? It could just be basic info and a "what do we need to know/what can we do to ensure your child's time here is a positive experience?" That way parents don't have to answer in front of their child or have others over hear. Then they can all be filed by first name, and availble for anyone new helping out.

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OhElizabeth,

 

 

My church is fairly large; the sn class is very small.  Up until this week, I only had one student on a regular basis.  I've known him his whole life, so I knew what to expect.  His mother is very open with his needs; he is very comfortable in our church.  Most of the people who help in the class are his family: mom, teenage sister, aunt.  The person who leads the program grew up with sn brothers.  Most workers only work with the class once a month.

 

We don't currently do much during the Sunday School hour, because the only student we had for a while is usually late.  (Shoes, breakfast, you probably know better than I do.) ;)

 

For the church service, we usually take him to the children's church class.  We sit in the back with him.  Sometimes he makes it through the whole service.  Sometimes it is too noisy for him or he has to use the restroom or he gets too loud, so we take him out.

 

I've been working with him for probably two years now, so I'm semi-comfortable with his needs.  

 

However, the last time I worked in the class, a series of things happened that caused me to be the only teacher in the class for drop-off time, and I felt very overwhelmed because there were two new students.  (Both of the students had been there a few times before, but never while I was there.)  

 

I understand that autism is a spectrum disorder, but I don't know how to phrase the "Where on the spectrum is your child?" question in a way that would not be offensive.

 

 

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Tough position. Would filling out a very brief index card size form help? It could just be basic info and a "what do we need to know/what can we do to ensure your child's time here is a positive experience?" That way parents don't have to answer in front of their child or have others over hear. Then they can all be filed by first name, and availble for anyone new helping out.

 

Thank you!!  I think that this would help me a lot.  The person in charge has mentioned doing this, but I don't know if it has happened yet.

 

Is there any kind of information that you think we should specifically ask for?

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Thank you, OhElizabeth.

 

Other than food allergies and bathroom issues, is there anything else I should be asking about?  

 

For instance, last week I had two children I had never met.  When I greeted one of them (as he was being dropped off by his dad) I asked him a question (I think "How old are you."  At that point the dad said, "Oh.  He's non-verbal."

 

This is the type of thing that I would not have known to ask or how to ask.  It would seem kind of rude (to me) to ask every parent, "Is he verbal?"  Obviously, this is something I would need to know, but I wouldn't know when or how to ask.

 

It sounds like I need to have a talk with the group leader about how situations like this should be handled.

I think when someone comes to your room, you want to communicate: We accept you exactly as you are.  Does it matter how old he is?  No.  Are you using that information for some reason or was it merely a social greeting?  A simple Hi! and a smile would have sufficed.  That shows welcome and acceptance.  

 

Yes, SN kids can have issues with communication, how well they understand directions, whether they're attending to what you're saying or whether their mind is engaged on something else.  A lot of it is the stuff you already know of communication: slow down, get on their level, get eye contact (without forcing it), greet, and use multiple methods of communication if one isn't getting through.   Be patient because some people take time to warm up or have low processing speed.  

 

Honestly, I wouldn't ask questions.  The intake form for new kids is fine, asking if there's anything you need to know is fine, ask his name.  Beyond that, you're there to show love and acceptance.  

 

You know what's funny is other kids seem to accept my kid.  If he goes to the Y and does something unexpected, they just readjust and go ok, he couldn't respond at the level I was expecting, I'll readjust my expectations and keep playing, no problem.  Don't be nervous.  These parents have already made a statement that they're comfortable with you by bringing their child there.  I think for that hour their expectations are very low...  Safety, acceptance, a sense of warmth or love.  If you get that done, the parent is happy, guaranteed.  At least that's my take.  

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I understand that autism is a spectrum disorder, but I don't know how to phrase the "Where on the spectrum is your child?" question in a way that would not be offensive.

I'm sorry you were so overwhelmed!  Since many parents of kids with SN feel overwhelmed at times, it's not you!  It actually is overwhelming.  But it's sort of like childbirth or steam saunas or other intense things, where you can know it's coming, mentally talk yourself into a place of calm acceptance.

 

Why does it matter what his ASD level is?  You're saying you turn them away if they're ASD3?  ASD2 on ritalin, ASD1 without, I mean that would get really weird really fast.  Really, if you're actually teaching you might find yourself wanting to know IQs so you can cater instruction, LDs so you don't expect writing.  I mean this could just get UGLY.  I'd just accept them. Whatever walks in, that's his unique him, with no one else like him on the planet. Ask if there's anything you need to know and ask their name.  That's all.  Everything else just roll with.  

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I really think those two questions for new kids should give you the majority of info you need. The parents you are dealing with are used to answering questions about their child, but they do want their child to be seen as a child not their dx. I think those questions also send the message to parents that you are wanting to work with them. Those are two key things I look for when I am looking for any program for ds. Programs that want many specifics about my child signal to me that they are more about managing my child then about accepting and working with my child.

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I'm sorry you were so overwhelmed!  Since many parents of kids with SN feel overwhelmed at times, it's not you!  It actually is overwhelming.  But it's sort of like childbirth or steam saunas or other intense things, where you can know it's coming, mentally talk yourself into a place of calm acceptance.

 

Why does it matter what his ASD level is?  You're saying you turn them away if they're ASD3?  ASD2 on ritalin, ASD1 without, I mean that would get really weird really fast.  Really, if you're actually teaching you might find yourself wanting to know IQs so you can cater instruction, LDs so you don't expect writing.  I mean this could just get UGLY.  I'd just accept them. Whatever walks in, that's his unique him, with no one else like him on the planet. Ask if there's anything you need to know and ask their name.  That's all.  Everything else just roll with.  

 

I didn't mean that we would turn anyone away.  The one student that we usually have has a brother who also has autism, but he is not in our class.  He is mainstreamed at school and does fine in a regular Sunday School class.

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I think when someone comes to your room, you want to communicate: We accept you exactly as you are.  Does it matter how old he is?  No.  Are you using that information for some reason or was it merely a social greeting?  A simple Hi! and a smile would have sufficed.  That shows welcome and acceptance.  

 

Yes, SN kids can have issues with communication, how well they understand directions, whether they're attending to what you're saying or whether their mind is engaged on something else.  A lot of it is the stuff you already know of communication: slow down, get on their level, get eye contact (without forcing it), greet, and use multiple methods of communication if one isn't getting through.   Be patient because some people take time to warm up or have low processing speed.  

 

Honestly, I wouldn't ask questions.  The intake form for new kids is fine, asking if there's anything you need to know is fine, ask his name.  Beyond that, you're there to show love and acceptance.  

 

You know what's funny is other kids seem to accept my kid.  If he goes to the Y and does something unexpected, they just readjust and go ok, he couldn't respond at the level I was expecting, I'll readjust my expectations and keep playing, no problem.  Don't be nervous.  These parents have already made a statement that they're comfortable with you by bringing their child there.  I think for that hour their expectations are very low...  Safety, acceptance, a sense of warmth or love.  If you get that done, the parent is happy, guaranteed.  At least that's my take.  

 

 

I really think those two questions for new kids should give you the majority of info you need. The parents you are dealing with are used to answering questions about their child, but they do want their child to be seen as a child not their dx. I think those questions also send the message to parents that you are wanting to work with them. Those are two key things I look for when I am looking for any program for ds. Programs that want many specifics about my child signal to me that they are more about managing my child then about accepting and working with my child.

 

 

This is all helpful.  Thank you!  I think I have been going into this (inadvertently) with the wrong approach.  I guess the new approach would be accept and roll with it. :)

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IMO, if you are getting feedback from parents that make you feel like you need to walk on eggshells then you are either doing something horribly wrong (and I'm not sensing that from your post) or the parent are still in mourning/denial and just aren't up to advocating for their child.  If someone won't tell you what you need to know, I don't think you should feel bad about it.  Treat the parents  gently if they are hurting, of course, but don't feel bad as if you've done something unexpected or wrong. 

 

I think it is utterly ridiculous that the father wouldn't find a way to let you know his child was non-verbal.  Asking questions is not some horrible taboo and even parents of SN kids should expect that to happen and prepare the caregiver in advance.  I mean really, there are limits to how much customization you can expect to be able to perform knowing nothing about a child.   I have a kid with SN.  I tell people what I need them to know.  I will admit that I get upset when I have told someone about my child's needs and then they overlook those needs.   So maybe write yourself notes if a parent has communicated with you so that you can remember. 

 

 

If you do ask a child and they don't respond, I would suggest saying "Oh that's OK you don't have to say anything if you don't want to" and move on.  Treat things as no big deal and show genuine interest as much as the child permits.  i.e. Some kids don't want eye contact so don't push them to look up if they don't want to; Don't push to have a child to participate in something physical if they are giving signs that it makes them uncomfortable, etc.  If a child looks to be more anxious as the class progresses, maybe take down the noise or input level in the room for a bit.  As an example, my child would not wear a costume or pretend to be a character.  So doing a skit as part of the lessons was not something he wanted to do.  An adult who says that's OK would not offend me, and adult who says "But you have to..." would. 

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Yes, I agree that is odd to just drop your child off and not mention they are non verbal. I do expect questions and I do tell everyone what they need to know because I want to make sure it is a successful experience for ds.

 

Junie - The good news is that you have families coming back, so I think you are already doing a great job! I have read many stories of moms having a horrible time with Sunday school situations for their SN child. So keep up the good work and see if you can get the director to implement some sort of standard intake procedure so you have the info you need.

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It sounds to me like you're doing a better job than you think you are. 

 

I think the easiest way to get all the information you need on the children would be for you and whoever else looks after the class to brainstorm a list and make it into a form to be filled out with the parent/guardian whenever a new child turns up. You could use a combination of closed questions (eg Child can toilet independently, toilets with assistance, wears diapers/pullups - check one) and open questions (eg Is there anything else we need to know to make sure child is happy at Sunday School?) If it is made clear that this is the form that you fill out for everybody, then parents are much less likely to think you are being intrusive, or making judgments about their child. Assuming you have a system for the kids to put on name tags each week, then if you don't remember the details for a particular child, it would be easy to pull her form out and have a quick look.

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My 6 yr old has ASD.  I think this is the coolest thing.   He is mainstreamed in a 4 yr old preschool class at our church.   Not sure how long my church will let him stay in that class.  :)   I'm hoping one more year, b/c next year his 4 yr old brother will be in that class.  I really love our church and plan to be there for years to come.  I like the idea of him and his little brother being in the same class for the next many years.   he will always need an advocate and a sad fact of our life is we are already thing ink of grooming his little brother to be that advocate (or one of them).   

It sounds like you are doing a great job.   My top concerns I try to share are FOOD-- don't feed him anything I didn't send!  
My son has limited verbal skills, so I do usually give the workers a heads up about that.   While it isn't an issue for us now, a year ago, I would have worried about my son trying to dart off.  I also would have worried about him being overwhelmed and over stimulated and then having a meltdown.   My son also had a lot of bathroom issues-- not the usual he wets himself-- but more SPD issues.  If the bathroom was too loud -- loud fan, flush or hand drier-- he would flip out and end up so confused and out of sorts.   

I know people want to be sensitive, but I think the more info you have, the better you can care for these kids and love these families.   
I don't mind sharing some info so that people can better care for my son.   I don't know how to word that for others, but I doubt most families are worried about you using the right term.   I can say this b/c we had to drop out of church for nearly 2 years other than Sunday morning b/c church was just too hard.   If I had had someone at our church reaching out and asking how they could help, it would have been a life saver.  I don't have any family here to help.  I have 6 kids and life was just so overwhelming everyday for several years.   I can't tell you how grateful I would have been to have had real support from my church.   As it is, they have come around a lot, and things are better as my son has improved more and our church has become more aware of needs of SN families.   

 

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Oh-- on a side note.  Many families are sensitive to PERSON FIRST LANGUAGE.   Example:  My son with autism versus My autistic son.   So however your word things the Politically correct way is person first.  Do what you can to focus on the child first instead of needs first.   

(FTR-- I am not too picky, but many are!)

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Oh-- on a side note.  Many families are sensitive to PERSON FIRST LANGUAGE.   Example:  My son with autism versus My autistic son.   So however your word things the Politically correct way is person first.  Do what you can to focus on the child first instead of needs first.   

 

(FTR-- I am not too picky, but many are!)

 

This is something I will have to make an effort to work on.

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Thank you, all of you, for sharing your experiences and advice with me!  Yesterday was my turn to work in the special needs class, and it went much better.  There were a few moments when I recalled the words from above posts to help me understand a situation better.  I tried to smile more.  :)

 

I'm going to be helping again next week as several regular workers will be on vacation.  Thank you for helping me to enjoy this more and more!

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