Tuesday, December 20, 2011

If you can't go to the Cub Scouts, bring the Cub Scouts to you

For weeks, Max kept refusing to go into the church where the cub scout meetings are held. I emailed back and forth with the den leader, and we decided the boys would come to our house and bake cookies. Oatmeal cookies, he decided, and I held my tongue from saying "But don't you think double-chocolate-chip cookies would be even better, because they are my favorite?"

That night, Sabrina and I headed out; I wanted Max to spend time alone with the kids. The two of us hung at the library, where she showed me the gingerbread men she had made the other day with our babysitter—one for her, and one for Max. Then she inexplicably wanted to hit the olive bar at Whole Foods, so off we went.

Dave texted me a play-by-play account of what was happening at the house:

Boys arrived

Max upset and crying

He's upstairs in his room and he's calmed down

He wants to go downstairs

He's showing the boys his iPad

By the time we got home, the only trace remaining of the kids was a flour-y kitchen floor and a plate of oatmeal cookies. Max hadn't interacted that much with the boys, but it was a start—one of the first inclusive activities he'd ever participated in.

Of course, we can't host every meeting at our house. Now that Max has met the other cub scouts, though, he might be a little more amenable to going into the regular meetings.

It wasn't what I expected to happen, but it was still good.

I think that just about sums up our life.


  1. Take it in stride. Have you ever done a social story for Max about going to Cub Scouts. It might calm some of his anxiety. Let me know if you need done help.

  2. Hi! No, we haven't, would love to hear about that.

  3. "It wasn't what I expected to happen, but it was still good." The truth of those words make me want to laugh and cry... What a smart idea to bring the Cub Scouts to you—you never know what will happen to those little seeds you scatter (and I'm not just thinking about Max here, but about the boys in his pack).

  4. A social story can be as short or long as you want. It simply explains what is going to happen at an event, alerts the child to things that might cause them to be uncomfortable, and then provides tools for how they can cope with that. Here is one that M's behaviorist and I wrote for M's first airplane ride: http://marfmom.com/archives/3340. I've since made subsequent stories shorter in length and with shorter words (that behaviorist was used to working with older kids). I try to set stories up like a little book so we can read, re-read, and re-read them before the event. I also add clip art and photographs, because M is very visual.

    Obviously you know what might resonate with Max best - if you even think a social story might help - but some things that you could address in the story are:
    - what will happen at the meeting, in the proper order that the events will occur
    - that a lot of people will be occupying a small (i assume, if this is at someone's house) space
    - the noise level

    In terms of coping, would things like suggestions for what to say to other kids, reminders that Dave will be there and can take him to another room if he asks, or headphones (maybe earbuds, like you'd use for an ipod?) help? So, a page in the story might read:
    "There will be a lot of boys your age at the meeting. Sometimes it might get loud. If it is too loud, tell Dad and he will take you to another room."

    Also, have you ever done deep pressure with Max? I realize he doesn't have autism or sensory processing disorder, but having difficulty with crowds/lots of noise is still sensory related. We do joint compressions, squeezes, and rubs before M goes somewhere he might have a difficult time. We also have him do heavy work: wearing a backpack with some toys inside, moving cans of vegetables across the room and back, etc. These are spaced throughout most every day as a "sensory diet," and then we do more of them before a potentially hard event. If you haven't already, it might be something to try?

  5. Thats good for Max definitely.But is it fair to expect parents of the other children to be okay with their kids going into people's homes they might not know very well. I assume the cub scouts leader took that into account and the parents were fine with the idea.

  6. Maya: Thank you for those awesome suggestions! I am going to try a social story and some deep-pressure massage.

    Audrey: It was the den leader's idea to bring the kids to our house this one time, to make Max more comfortable. And the parents brought their kids to our home. But thanks so very much for making sure that I hadn't done anything awful or evil, or that the den leader hadn't, in trying to find a way to have Max try the Cub Scouts.

  7. Ellen you seem peeved by my comment, sorry for that. But really would YOU be okay with your children going to peoples' homes, until you had met them and were okay with it.

  8. Yep, Audrey, I would be totally comfortable sending Sabrina to another kid's home—even if I didn't know the parent—if there were a den leader present and other parent escorts, and I knew it might help a kid with special needs. I'm just open-minded that way.

  9. I would be totally fine with my boys going to someone's house with a trusted adult. Actually, with my NT kids, it happens alot. And we have kids here on a regular basis that I've never even met their parents and their parents are fine with dropping them off anyway. So I don't see a problem with it at all.

  10. I know my autistic son is a cubscout and all of us parents come to each and every mtg with our child. It's up to the parent to take care of your child. I love going too. I also think it benefits all the boys to break their normal routine of going to the church and do something different.

  11. So totally agree with you Ellen. I would let Zac go to another parents house any day under similar circumstances so he could become more involved with other kids and groups like cub scouts. Thank you for standing up!


  12. Ellen,
    I love that idea and love that the cub scout leader was working with you to come up with such a great solution.

    Re: the social story, I love that idea, too! You know I live like 5 minutes away and I make these for children all the time. If you are interested in doing this, let me know and I will donate my time to make one for Max. They can be very effective!

  13. I agree too. In this setting, with escorts etc I'd be happy for my kids to go to another's home.
    I love the social story idea but it would have to be adapted to each child receiving it.
    As you said Ellen, the activity with the boys will help to acclimatise Max to the chaos of the den.
    Maybe spells of time at the door or with just a few boys in a side room can be next steps?

  14. Melanie: I'd love that! Email me—lovethatmax[at]gmail.com

    Thanks for the encouraging words, all. Dave, we've tried those baby steps at the church, no results, but I will be bringing him back again in early January, so we'll see.

    And Audrey, again, maybe some parents would have an issue with their kids visiting a family they don't know, but it seems that a lot don't. Besides, since this meeting already happened, I just didn't see your point in bringing up what you did. I refuse to feel badly for stuff I do for Max, particularly when others agreeably join in! However, if I ever decide to rob a bank with Max, you are free to call me on it.

  15. I love that you were able to come up with a plan that worked for everyone!! I have found that I have been just blown away by how people are willing to help out another kid. The benefits to the more "typical" children are great too. I see it with my daughters class. Lizzy spends some of the time in a small class and some time with a typical class the children are so wonderful and open and are always looking for ways to help her. What a great lesson for any kid!! I have had parents tell that they love my daughter and have become so much more accepting. I wish I had that when I was growing up. Any kind of difference was either hidden or ignored! Yea for you and for the whole scouting troop!! After all isn't that what the Scouts are all about!! I'm glad Max made the first step!! Good for him!!

  16. aubury cut it out ellen is trying to do whats best for max


    maybe try to have Sabina go over to a friends house or something so you and dave can help with max

    ps i think social stories might help or maybe a video of the meeting can't wait to hear how it goes

  17. Going over to someone's house that my kid doesn't know very well?

    You mean, like, last night for her Girl Scout meeting?

    Audrey - I mean no disrespect, but what would you expect Ellen to do? Simply not try to come up with a solution to satisfy her desire to have Max included that also includes the other children, for fear of the other parents "not knowing" her?

    If I was uncomfortable with a similar situation, I would call, go to the house, investigate.

  18. Ouch! Ellen, pull those claws back in! I saw your post on FB about this blog post and how you get "a bit defensive" when people are judgmental about what you do for Max. I was expecting to read a really offensive comment, but I found Audrey's comment to be very low key and to raise a valid concern that many parents today would have about their child going to a stranger's house. I didn't find her comment "judgmental." It was simply a different point of view, that you disagreed with, and, in my opinion, you really have overreacted. You came back at her with three different posts full of sarcasm, and then continued to bash her on FB.

    This reminds me very much of the post about the restaurant refusing to have the chef cut Max's spaghetti in the kitchen. When someone said they thought that you seemed to feel "entitled," and why couldn't you just cut it yourself like every other parent does for their child, you overreacted the same way, even writing a second post about having spaghetti cut. It seems that you really get bent out of shape if someone seems to suggest that you are letting yourself be manipulated by Max or that you might be unrealistically demanding of others.

    Everyone has different opinions about how to bring up their children. Since you do invite comments on your blog, you should expect that readers will have different views than yours.

  19. i am sure ellen expects differing opinions and views; that is pretty much a given in blogger-land. however, she is entitled to hers as well, and yes, she is 'entitled' to respond any way she sees fit. and if ellen wants max's spaghetti cut in the kitchen at the restaurant... who flippin' cares!? and having the cub scout mtg at her home? great idea! and anyone who is uncomfortable w/it can always opt to keep their kid home... or... get off their parental butt and accompany their kid, if it's that much of an issue. i am totally w/ellen on this one. blessings...

  20. Hi, Galen. You are so right, everyone has different opinions about parenting. Except her comment did not sound like an opinion at all, to me. It seemed tsk-tsk-y. Obviously, you can read all sort of tonality into printed words. That said, wording such as "But is it fair to expect the parents of other children to be OK with..." inherently assumes I had intently done something that was NOT fair. I clearly stated the den leader and I had come up with the idea—actually, it was his. And the division leader in our area knew of it, too. We did not lure Cub Scouts to our home without the parents' knowledge. But I did manage to find a way to have my son attend a Cub Scouts meeting, which has been a real struggle. And for that, I'm proud.

    As for the other time I spoke about against a commenter,, I believe he left a rude comment like "Entitled, much?" I have a low tolerance for rudeness. And I react when people seem unjustly judgmental.

    I definitely welcome difference of opinions, though. If I didn't, I wouldn't have a public blog in the first place. And if your opinion is that I overreacted, that's your opinion.

  21. OK...Audrey -- what WAS the point of your comment? Does it make sense that the Cub leaders would just do 'whatever' without informing parents of the planned event?

    In my opinion, you need to examine your attitudes toward people with special needs. The battle for inclusion is very difficult, and I feel that Ellen reacted not to the surface comment, but the subtext -- I have to say that I got the same inference, and I feel as Ellen does.

    ALL CHILDREN should be included in community clubs such as Cubs. Yes, sometimes we must have modifications and accomodations to make that possible -- but is it really so hard? Does it really matter more how I look -- whether I am 'typical' and not 'different' -- than how I feel?

    Not so many years ago, the colour of one's skin mattered more than the content of one's character -- keeping 'those kids' away from 'regular kids' is just a different version of the same thing, and that is the subtext I read in your comment.

    I'm sorry many of us jumped on you -- but the battle for inclusion is long and hard, and we can't afford to ignore the subtext -- it's the greatest barrier of all.

  22. I feel like this no different than a birthday party. My son gets invited to so many where I haven't met the parents so I just go with him, simple as that. My son is 4 and is in pre-k so I do know ,ost of the parents and theyre great with him. They understand that he has special needs and does need different accomadations at times and are more than happy to do what ever they can to make it a positive experience. The kids also know him so well and speak up for him! If he starts going topsy turvey the kids know he's just getting overstimulated. So already these little kids are understanding that things are just different for him and that's okay, they don't think he's weird or treat him poorly! And the best part is is that these kids are passing this on to their parents as well who may not have experience with special needs people.

    Off topic but I wanted to share what happened to us last night, it was amazing! We had family come into town and decided to go to our favorite local Mexican restaurant. It's 50/50 on how Paolo will do so we're prepared to make a early exit if need be. Because we were a large group the talking got too loud for him. We pulled out his favorite picture books hoping he would focus on that. He still rocked a bit and made some rhythmic sounds but he sat there for two hours looking at those books and was able to cope! That in itself was amazing but to our surprise the waitress came and gave him $20 to purchase his some new books! She recognized it was hard for him but was so impressed at how well he did, she said it really touched her! I almost cried! Our son didn't really understand what happened but our whole family was just so touched that someone noticed how hard he worked, more often we get stares so it just felt good that someone did that for us:)

    Also thanks for sharing the social story idea, I think that is a great tool!

    Happy holidays everyone!

  23. i'm confused...do people not hold scouting meetings in their homes anymore? when i was in girl scouts we met not only at the leader's home, but other people's houses depending on what badges we were working on. no big deal.


Thanks for sharing!

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