not so easy – (alternately titled, why inclusion can’t happen in a vacuum)

**

It sounds simple. Talk to your children, we say. Teach them compassion. Show them tolerance. Guide them to a place of understanding. Tell them that people are different. Foster in them an appreciation of the diversity of the human experience.

Easy, right?

Maybe not so much.

The big lessons might not be so difficult, but what happens when it gets grittier? What happens when the muck of the day-to-day gets in the way and the real-life details complicate the conversation? Then what?

My dear friend, April is the parent we wish they all could be. She’s the one with the open mind, the overflowing heart, and an abiding desire to guide her children well. She is aware; she is sensitive; and she desperately wants to do everything in her power to support kids like ours. She is bright and articulate and as thoughtful and careful as a parent as she is as a friend.

I say all this not to make April blush, but to make the point that there is probably no one better equipped to recognize and handle a tough situation than her.

But even April gets stuck.

Because this stuff isn’t cut and dried. It’s messy. And when there’s nothing to go on but what your first grader is telling you, it can be downright confounding.

April has generously agreed to let me share an exchange that we had yesterday about her daughter, Molly*, a neuro-typical first grader. I am grateful that she’s allowing me to share it because I think it’s important, both for all of us to see these issues from a different perspective and to get us talking about how we might help guide the parents of the children who interact with our kids.

There are good people out there who want to help. What would you tell them?

To: Jess

From: April

Molly mentioned to me tonight that there is a little girl in her class that keeps repeating to her, “Hi, my name is Hope*.” She said she does not say anything else and will not stop saying it even when Molly asks her to. Molly seemed frustrated and confused. I did my best under the circumstances with the facts she was reporting but other than that I know absolutely nothing about little Hope.

What do you think I should do? Ask the teacher for guidance? Reach out to Hope’s parents for a play date? Open house night is tomorrow so I may meet Hope’s parents there. I mentioned a play date to Molly and she seemed anxious about it because she said she cannot get Hope to really talk to her.

I do not want to set up either child for a bad play date but you know my mind is spinning …

I told you she rocks. Anyway, here is what I wrote back. By no means do I suggest that the strategy that I suggested is the ‘right’ answer. It was ‘an’ answer. And no, I don’t use capitalization in personal e-mails. Sorry, Mom.

To: April

From: Jess

… not every parent, especially of the little ones, has necessarily evolved to a place of acceptance and/ or is ready to tackle a conversation directly acknowledging their child’s differences. since you don’t know where the parents may be (and you also don’t know the situation other than through the eyes of a fellow student) i think it best to start with the teacher.

now, as for the approach with the teacher ..

it can get sticky in terms of confidentiality issues, so you’ll want to make sure that you don’t appear to be even inadvertently asking about a diagnosis. instead just focus on your desire to help your daughter navigate what might be a challenging situation in a way that supports this little girl. tell them that you’d love to invite her over if that would be appropriate, but would like some guidance on how to make a play date successful for BOTH of the girls.

truthfully, if it were me, i’d likely just tell the teacher all of it. i’d tell her that you have a friend whose daughter has differences and that you are very sensitive to the issues and you really want to be supportive but you’re not sure how to do it. ask if she thinks the parents would be open to a conversation or how she thinks it best approach them. i tend to go with honesty and full disclosure and then ask for help. makes it far less awkward than trying to dance around the real questions. i think the key is making sure that it’s a private conversation with the teacher, then come back to me and i’ll happily help you decide how to proceed based on what she tells you …

Further proof that she rocks, in case you’re not already on board (and yes, she even capitalizes) ..

To: Jess

From: April

… I will make a point to greet Hope’s parents [at Open House] tonight but with no agenda other than to see if I can lay the foundation for some natural rapport that may be useful down the line.

Also, in the moment [with Molly] last night – I panicked a bit but stumbled through it ok. I feel the need to revisit the issue with more thoughtful advice. I wish there was a post on this with a loose script that I could have fallen back on. Sounds lame, I know.  I think you may have mentioned good picture books on this issue in the past.  I am going to see if I can find them and read them with Molly because I think I was speaking over her head a bit and not meeting her on her level …

Since I didn’t have time to compile a list, I sent her the link to the book that I had put together when Brooke was entering kindergarten.

http://adiaryofamom.wordpress.com/2008/09/17/aut-viam-inveniam-aut-faciam/

There are certainly many ‘real’ books out there now.

The Autism Acceptance Book

All About My Brother: An eight-year-old sister’s guide to her brother who has autism.

Since We’re Friends: An Autism Picture Book

But you may have noticed that all of those books have the word ‘autism’ in their titles. It can get sticky introducing the word ‘autism’ to a neuro-typical six-year-old as a means of explaining the behavior of a classmate who may never have heard the word themselves.

My conversation with April made me wonder yet again how we can expect to enlist the understanding of other kids and their parents without open conversation. What if Hope’s parents don’t want to say anything because they are concerned about ‘singling her out’ or ‘saddling her with a label.’ (I have no idea, of course. This is entirely hypothetical, but follows what I have found to be a pervasive way of thinking in our community.) Unfortunately, Hopes’s behavior has already singled her out. That’s what autism does. It stands out. Neither autism’s gifts nor its challenges tend to hide well. Which says to me that we can’t either.

Whether or not we are the ones to label our children, they are being labeled. Personally, I much prefer ‘Autism’ to ‘Annoying’ or ‘Stupid’ or ‘Misbehaved’ or ‘Spoiled’ or ‘Disruptive’.

These conversations are happening, with or without us. So how would we have them go? What would we have parents say to their kids when they want to support our children but they don’t know where to begin? What would we like them to do?

WHAT WOULD YOU HAVE SAID TO APRIL?

I would be grateful if you would leave your thoughts in the comments.

ed note: I’d also greatly appreciate links to your favorite books for children on this subject. They don’t necessarily need to be autism specific; I’m just looking for stories that teach our kids to understand and celebrate their differences. Thank you!

ed other note: Children’s names have been changed, as always.

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34 thoughts on “not so easy – (alternately titled, why inclusion can’t happen in a vacuum)

  1. I think your advice to April was sound. If she needs to explain to Molly that would be easier for a child that age to understand, she might take her somewhere like an ice cream store or a candy store – somewhere with lots of very different, delicious options. Then proceed to ask Molly to pick what’d she’d be if she could, and then ask her if there are other yummy things here, too. When she answers yes (if she likes candy or ice cream, lol), tell her that’s the way the world is. So many different types and flavors but that almost all of them are good *because* they are different. And while Molly may be, say, Strawberry, Hope is Bubble Gum. And Bubble Gum is delicious, it just does “yummy” differently than Molly.

    I’m all for the object lessons, myself. However, my ASD child is my oldest. I just explain to his friends that he “talks” through noises and pictures rather than words. They all seem fine with this, and some actually think it’s cool. They are supportive, in spite of his differences. Whether that will continue on as they get older – I’m not sure. I hope so!

    Sorry for the novella.

  2. Remember the other day when I said Katie rocks, Luau rocks, you rock, well add April to the list too.
    Holly Robinson Peete wrote a great book, “My Brother Charlie” that I love. Yes it has the word autism in it, but it is really a great book that discusses the issues of social communication. Bottom line, if the person starts out from a place of love and compassion in their heart, everything else generally falls into place, doesn’t it?
    Signed and April fan……

  3. i think you’re right, with what you told her. steering someone towards acceptance (anyone really, but especially kids)…it can take a long time, that can be a whole process, so i think taking it to the teacher is the way to go, let her know what’s going on so that she can monitor the situation, structure a positive set of interactions. some kids, they just need time in order to see difference and not feel confused, so the teacher, that’s the way to go.

  4. Interesting to ponder. I’ve been spending way too much, erm, I mean, LOTS of time in my son’s classroom since school began (that’s a whole other story). Since he’s nonverbal and uses a speech-generating device, well, and since he’s kind of *obviously* different, I’ve been fielding lots of questions from the children. When they ask about why he can’t talk or why he does things differently, I simply tell them that some people need help doing certain things and that we don’t really know why Nik can’t talk but that he CAN use his “talker”.

    Long winded way of saying, maybe the best approach is simply to explain that maybe Hope has some kind of difficulty making her mouth say the things her brain wants it to say and that, maybe, April’s daughter can look at the other ways in which Hope might connect with her. Do they share an interest in sports, dolls, coloring? I wouldn’t make a very big deal of it until after April’s met the parents and had a chance to check with her instincts about what’s ok to ask or not. Meanwhile, I think your suggestion of approaching the teacher and making it about trying to find the ways to help the girls connect is a very good one.

  5. …and Jess, it’s all about diversity in every way. Some of us capitalize. Some of us don’t. I think (deep down inside), I’d actually prefer not to and may try it to make sure my head won’t fall off when I do. All of you rock, by the way.

    i love you,
    mom

  6. I appreciate you sharing all of this, Jess (and April, indirectly). I think one thing that is important with a first grader is to make sure not to jump to conclusions about the situation. Think of a young child asking where babies come from and we go into “holy cow is this the time for THAT talk” mode when all they want to know is the super basic, like from a specific part of mom’s body (not how it got there in the first place). But I imagine April and Molly’s observations are on target. If so, I agree that the strategy of gaining rapport with the family, and asking the teacher’s advice/input is a good one.

  7. Both of my sons have autism, one with severe autism (totally nonverbal, limited receptive vocab.) and one with Aspergers, so I have run into similar situations many times from Molly’s parents’ side. It is the rare parent of a neurotypical child who will approach a parent of a child with differences for a play date, so April’s willingness to do that is a wonderful thing. That in itself might thrill Molly’s parents so much that they fall at her feet in thankfulness. :) I have actually been in the same situation as April, trying to persuade my son with Aspergers to try playdates with some other children in his social skills class whom he has decided were even more “different” than he is. (Adding his problems “getting” empathy due to his Aspergers made a delicate situation even harder.) I also recommend the book “My Brother Charlie” by Holly Robinson Peete. Kudos to April and good luck to everyone! Let us know how this plays out.

  8. What a great post! I think it is great that April is so compassionate and wants to also educate her child about the different people we will interact with in Life. I also commend her on wanting to include Hope in such a way that is comfortable for both children. Kudos! and I wish there were more like her!I would have responded in the same way-and approached the teacher. The books you recommened are great resources as is “Wendy on Wheels”. There is a company called “Inclusion Press” that has many other resources: http://www.inclusion.com/books.html

    I work with children and families, providing adaptive movement & art classes for enrichment, fitness, socialization & cognitive support. In the one school where I worked, they had a “Buddy” program run by an “Inclusion Facilitator” who went to each classroom and talked with the students (and teachers) about ways to include our friends with alternate learning styles-(she made it very kid-friendly and easy for them to understand) I had the pleasure of seeing the results of this-on the playgrond, in the halls and in the classroom. The “Typical” children were eager to support their “aTypical” friends, and this happend most times without prompting from an adult. Mybe a program such as this could be useful in Molly’s and Hope’s School? (You may be able to get parent volunteers guided by an OT, Speical Ed teacher or therapist?)

    In my movement classes, I use stories, movement, art & play as the vehicles for socialization. This has worked very well as most children love stories! I adapt the delivery method if the children are non-verbal-I use felt boards or my own form of PECS. The art project compliments the story in some way.

    • Barbara, you had me at “I work with children and families, providing adaptive movement & art classes for enrichment, fitness, socialization & cognitive support”. I think I love you.

  9. first putting myself in the shoes of hope’s mom, i would be most appreciative of this behavior being shaped into additional comments or different ways to initiate conversation. i would want the speech therapist and teacher to work on this asap. i’d want to know that hope was doing this.

    so if i were april i would suggest molly say, ok we are done saying hi. i like to play with littlest pet shop, what do you like to play with? or i have 1 sister, do you have a sister? or, do you play with webkinz? or my favorite color is purple, what’s yours. etc. i would probably not go further with it unless molly came home and indicated they were becoming friendly and that hope was singling her out.

    and since april really rocks, but i could never do this, maybe she can try to buddy up with hope’s mother and ask if there are ways to talk with hope or if she wanted hope to come play with molly, etc.

    i strongly think the teacher and speech therapist need to work on this but i’d be afraid of meddling so it would be up to hope’s mom to advocate here and april can only pass on the info that molly tells her i guess, so it sort of depends on what molly’s mom is capable of in terms of advocating…

  10. A great book that I’ve used in my classroom is “Don’t Laugh at Me.”–not autism specific (but why I used it in my class) and yet incredibly accessible to kids. My edition has a CD and my students loved singing the song.

  11. Jess, as always I think your advice was perfect. There are also some great suggestions from other posters as well. My own experience with my NT daughter in first grade was things were OFTEN different in reality than they were from her perception. I think that digging a little deeper prior to approaching the parents is a very important thing to do. ( eesh- now I wonder what conversations are being had in other homes about my beautiful, but ‘all things space’ obsessed little boy. )
    To April- mind if we clone you? This world would be such a beautiful place if only more Aprils existed!

  12. Your advice is solid. There are too many parents in the dark or in denial so you can never assume they see the whole picture. They may know exactly what is going on and choose not to share it with the world, so you can’t throw it in their face. Work with the teacher and offering a play-date is perfect.

    As for the “my name is….” repitition, I would take a small tool from Katie’s wonderful tool box and say “What do you want me to say?” The child may be looking for a specific response. Thanks to Jess and Katie for teaching this old dog that new trick.

  13. “i tend to go with honesty and full disclosure and then ask for help.” That’s exactly how I do it :) I guess I’m a little surprised the teacher didn’t talk to the rest of the class about Hope. I don’t know, maybe the parents wouldn’t have wanted that but my son has had teachers that have done that and even read some of the books I’ve seen listed above to the other students. I guess what I’m saying is…maybe not only get the book to read to Molly at home but give it to the teacher to read to the rest of the class as well. (again assuming this is ok with mom and dad)
    And CeeCee, I completely agree with cloning April!

  14. This is so hard. How can we know what is going through our little ones’ minds? There is no way to tell just how much Hope “gets.” Often, I don’t give Bells enough credit for understanding the world around her.

    Would love to read a follow up on this.

  15. Last year we were at Disney World and had gotten a special pass for my youngest son’s autism (it was fab and we never waited in even one line). Let me note that I have 3 children: 14, 11, and 5 (Bella, Phin, and Pip (my autistic one)) and I’m a single mom. Needless to say, I was stressed out the entire time, but Disney made it really easy for the most part.

    Still, at the end of a 10 hour day,we were all exhausted and riding home on the tram, Phin, my 11 year old, said, “I know this sounds bad, but today, I’m so glad that Pip is authentic.”

    So rather than annoying, stupid, irritating, we try to stick to authentic. And every now and again: artistic. For me, it’s just how you see things that makes them different.

    • Absolutely, positively, hands down one of my favorite posts of all time. I’ve borrowed her fantastic analogy too many times to count!

      Thank you for linking to it!

  16. I think that being open is always the best policy. My son is in the first grade; He is mainstreamed with an aide. Each year I have come in to have a discussion with the class about Gavan and why he does certain things. He has learned a tremendous amount of stuff by copying the kids around him, but if we don’t explain to them that he learns from them by copying, they think that he is making fun of them. Having an open discussion about it helps to smooth over a lot of things. And we should stop treating the word Autism like it is a dirty word. Being Autistic is a part of who my son is. In terms of books, “Special People, Special Ways” is a nice one.

  17. I apologize for not having read all of the comments first, but can’t both do that and write my suggestion in the time I have. I’m speaking as someone who’s in April’s shoes, so please let me know if what I think I would say to Molly is off-base in any way. I would ask Molly to pick the one thing she has learned how to do, that was The. Hardest. Thing. She’s. Ever. Done. Then I would explain to Molly that it is probably even harder than that, for Hope to learn how to converse, and try to get Molly to understand how much effort it’s probably taken for Hope to know how to introduce herself. I’d try to help Molly understand how very much Hope must want to be her friend, to make this tremendous effort at talking to her. And this is where I’m afraid I may be way off, but I would suggest that Molly say the same things to Hope as she would say to anyone else, and interpret the repeated “Hi, my name is Hope” as meaning, “nice to meet you”. If Molly asks Hope, “do you want to play a game”, she might interpret “Hi, my name is Hope” as “Yes, I would love to”. Because, it feels to me like that is what Hope would say, if she knew how, and she’s only repeating “Hi my name is Hope” because she really really wants to play and be friends with Molly but she hasn’t got any other options to respond with.

    A book I have out from our library right now is Understanding Same by Clarabelle van Niekerk and Liezl Venter.

    • cheryl, i love the idea of relating the challenges directly to an experience that molly has had. i always think it’s best to try to understand others from the inside out.

      i would caution though against telling a young child how to interpret what hope is saying to her, particularly without any background. i think it’s great to explain that hope is obviously trying to connect with her and is reaching out in whatever way she can, but i think it can be dangerous to try to determine what she might be thinking without being there.

      to use the example of a game, hope very well might NOT want to play the game. if she’s anything like my brooke, she might just not have the skill set necessary to play most games. many typical kids’ games rely heavily on language, can have complex rules and take an inordinate amount of social understanding and awareness (turns and perspective taking, understanding the correspondence of player to game pieces etc). if it’s a game like tag or four-square, it can be chaotic and confusing for a kid who has trouble reading non-verbal cues and needs ample time to process information coming at them in different ways.

      especially with younger kids, i tend to suggest that they look to the adults in the room (teachers or aides) for guidance. the educators will hopefully have a much broader perspective and will likely be able to help facilitate a successful interaction.

      she also may be repeating ‘hi my name is hope’ because she is looking for a specific response from molly. many of our kids tend to stick to scripts that they know and become frustrated when their intended partner doesn’t play their role in the script. for years, brooke would repeat things ad nauseam until we managed to somehow divine the ‘right’ answer. now she will actually tell us what she wants us to say :)

      of course these are just my thoughts and i hope others will chime in as well! and again, i am grateful that you have taken the time to think about this and respond so thoughtfully.

  18. Oh this is such a tough one, I am so open about my sons’ issues-but there are so many parents’ who are very very private and against labels.(Which I will never understand-bc it is usually pretty obvious) Definitely talk to the teacher, but tread this one very lightly. It will be easy to tell when April meets’ the parents’ what she is dealing with and honestly let them suggest the playdate because they know the child best.
    Great blog today-i just loved every word of what you wrote-thanks

  19. I think your advice to April was spot-on. I’ve also heard of parents who do not want to disclose their child’s diagnosis, and I have a hard time understanding that, but I do respect it, simply because it’s their right. But in not disclosing, I think they’re limiting how much others might be willing to accommodate their child’s differences. Awareness leads to understanding. Okay, got off on a little tangent there – sorry! To recap – I think your advice was perfect!

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