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Concern about hearing impaired son transitioning to Webelos and Boy Scouts

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  • Concern about hearing impaired son transitioning to Webelos and Boy Scouts

    Hi,

    My son loves being a Scout. He loves building things and going camping with his daddy.

    I have some concerns about his future in Scouts. I am unsure how he is going to get along in an increasingly boy led Webelos den and then a Boy Scout troop.

    Our son was diagnosed this fall with Auditory Processing Disorder. It is a neurological problem, and cannot be fixed with hearing aids. This is a total shift for us as parents.

    Until just a few months ago, we thought he was shy and uncomfortable in groups and needed to be encouraged and required to stay in group situations and learn to handle them. Now, we have found out from the audiologist and the doctor that he has a sincere hearing problem and these loud environments are a lot like having a bad hearing aid cranked up to top volume. It's not a behavioral issue. It's medical. He is in therapy with a language pathologist, but it is uncertain how much we can help him overcome this, if he can at all.

    He cannot understand speech well in loud rooms. He does well in one on one conversations, mostly because he lip reads (which came as a surprise to us when the audiologist demonstrated just how much he is lip reading). When people talk to him from behind, to the side, or across the room, he frequently cannot hear or understand what they are saying. Loud environments are very uncomfortable for him, as the garbled sound is overwhelming. When the other kids get too loud and rambunctious, he will leave or "hide" in a book. Reading seems to help him block out the overwhelming sounds.

    The Scout leaders have been understanding. They know to gently touch him on the shoulder to get his attention if he appears not to hear something they've said. He's been ok in Cub Scouts so far.

    My concern is what is going to happen as he moves into the more boy-led Webelos and Boy Scouts. One boy in his pack just keeps yelling louder if he's trying to talk to my son from behind him or to the side. He can't get that my son is unable to understand what he is saying or even that the other boy is trying to talk to him. The other kid is only 9, like my son.

    A couple of boys in the pack have been bullying my son more and more in class and at pack events. Fortunately, he also has two good friends in the pack who have been raised well and understand my son has a hearing problem. My son uses an FM receiver in class to hear his teacher's microphone, so some of the kids understand there is a medical issue.

    Does anyone else have experience with their hearing impaired Cub Scout transitioning to Webelos and Boy Scouts? How did it go?

    I want my son in an environment where is learning and having fun. I am unsure if Webelos and Boy Scouts are right for him.

    Thanks,

    Georgia Mom

  • #2
    I'm so sorry for this bad news. Our best friends had two kids with a genetic hearing loss and we saw them go through incredible challenges. Our kids never had to deal with disabilities while scouting, but they had friends who did.

    Every disability is unique. So nobody - even someone with your son's exact problem - can tell you how resilient your boy will be.

    In general, boys are very resilient. Patrols adapt much better than do dens or packs. Plus there is a lot of growing that Webelos do. The size of the den is a big deal. The more they are closer to patrol size, the better everyone can learn to adjust.

    Comment


    • #3
      In Webelos, it's up to the Den Leader to help your son participate in the group. (You participating with your son would also help)

      In Boy Scouts finding a troop that is willing to accommodate him should be high on the priority list. He will want to join a Troop with his friends, and that should also be a priority. Scouting does have a place for kids with disabilities, but some troops are far better at dealing with it than others. I know my unit would love to have a Scout like your son. We've had plenty of Scouts with various disabilities in the Troop. Sometimes they don't stay around for long, but it's worth giving it a try.

      Comment


      • #4
        First thing I would do is have a talk with the Scout Master if you haven't already and the Senior Patrol Leader. Besides that try and be involved in the Scout troop and see if it is right for your boy.
        Also "A couple of boys in the pack have been bullying my son more and more in class and at pack events" are these boys moving up as well to the troop? and if so have you addressed the issue with the Pack Master and the boys parents? Besides that I can't offer anymore advice I hoped I help and whatever you do good luck on finding a troop.

        Comment


        • #5
          Older Boy Scouts (more so than 9 year old Cubs) should be able to understand and remember that your son's 'ears don't work', and so make sure that he can see their lips when talking to him. If I were his SM, I'd challenge his PL to come up with games where having a lip reader on my team was an advantage.

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          • #6
            My oldest has lost 50% of his hearing and most likely could be completely deaf in one ear by the end of high school. That said, with the right support and your help in Scouting he can succeed. Your help could be as an ASM for whatever troop he goes on to - there are so many ways you can be present but not right next to him yet still helping him and others. My husband does it. With bullying, if it happens at school - school should be handling it. If it happens at cub scouts let the den leader and cub master handle it. My oldest used to tell kids who would yell when they saw his hearing aids not to. Just that simple. He only started wearing them at 8. It was simple, he just told them to stop. The guys in his troop don't ever make a big deal about them. When he was at Jambo he didn't wear them because it was so hot and excessive sweat (and the constant rains) is very damaging to them. Like your son he reads lips and mentioned to his tent mate, SPL and adults in charge that he might not always hear them and can't read lips from far distances. He didn't have any problems. Every kid with a hearing impairment MUST learn to self advocate early, because hearing aids aren't always as visible as glasses and not everyone wears them. Also check with your council to find out what services they can help you with for meetings. It's hard - but worth it for the boys. It's amazing to see their pride when they can succeed like kids without an impairment. Mine will be a 9th grader next year and is working on becoming an ASL interpreter ( wants the patch too)

            Comment


            • #7
              I think you will find most boys are quite compassionate and will to their best to remember your sons needs and accommodate him. But there are twits in every group. We have a scout in our troop with a Down's related disability. When one Scout started bullying him, some of the other guys let it be know the behavior wouldn't be tolerated. Okay, they told him they would kick his butt if he didn't quit. While we had a discussion about technique, you have to appreciate the thought.

              Comment


              • #8
                Your son has a hearing disability, not a leadership disability. I wouldn't have any problem with him in my troop. There are SM's out there that feel the same as me. Hopefully you have one in your area. Over the years I have had many boys with disabilities, but it hasn't held them back. Standard anti-bullying requirements apply to all boys in my troop and they are all fully aware that the bully will be removed from the troop long before the victim is.

                What I have seen in the vast majority of these kinds of issues in my troop is that once the disability is known and understood, they are often accepted with no problem whatsoever.

                I hope your boy finds such a troop.

                Stosh

                Comment


                • #9
                  Thank you very much. It is so helpful to hear from parents who have dealt with this issue further down the road than we have been at this point.

                  I have not addressed the mild bullying with the SM or the CC. We are at this point encouraging our son to speak up and self-advocate.

                  I have also witnessed one of his good friends in his den stand up for my son when the DL/CC's kid (the yeller) said my son couldn't be a part of the group game they were playing at the last den meeting. I made a point of praising the child who spoke up for my son to be included to his parents in his presence. His family are good friends and they have four great kids.

                  There isn't much point in talking to Twit #1's parents, as his dad is the DL/CC and the son is a lot like his dad (Father Twit is the reason I quit pack leadership). Twit #1 will likely be my son's future patrol leader, as he is his father's Golden Boy, which is not a good prospect to think about.

                  Twit #2 is a former friend of my son's who is lashing out at everyone fairly recently, in class and in Scouts. This is a school based pack, and I volunteer at the school often enough to be very familiar with all the kids. I have reason to believe that Twit #2's parents may split soon. With bizarre behavior from the kid's mother, and a father who is just trying to keep it all together for his sons, I don't think I want to approach either of them right now unless the behavior gets significantly worse. I'm actually very worried about the kid, but regardless of what he is going through, I don't want him mistreating my son (or anyone else).

                  My concern was that "boy-led" might not provide the best structure and supervision for my son, but hearing that Scouting has been so good for kids with similar disabilities is encouraging me to stick with it.

                  Thank you all very much for your encouragement,

                  GeorgiaMom

                  Comment


                  • qwazse
                    qwazse commented
                    Editing a comment
                    In our troop, we don't excuse genetics.

                  • gsdad
                    gsdad commented
                    Editing a comment
                    As a parent of three special needs kids with varying challenges I can tell you kids adapt. Other kids will be mean, and some adults are just ignorant. Your son will adjust, and his true friends will be there for him.

                    However, the complete tone of your email is one of a victim. The name calling on your part is also very telling. Inform the prospect Troops of your son's condition, I suspect there will not be an issue on their end.

                    Good luck to your son.

                • #10
                  I would encourage you to visit different Troops. While there is never a guarantee Scouts can be excellent for Boys with disabilities. My older son had APD and sensory issues. While he would get confused by instructions and miss parts his brain seemed to compensate--he had the best eyes in the Troop for spotting stuff and an excellent sense of smell (he can smell a storm coming even if it looks clear). When he was young his Patrol Leader would have to use more hand signals with him. All the boys are different and all have areas of weakness and areas of strength--a good Troop will emphasise this.

                  The main issue would be to make sure that any safety issues be adapted to keep him safe and to keep down the bullying.

                  Comment


                  • #11
                    My wife is a SLP/AVT... and my son his a minor case of the same thing.
                    My understanding is that with APD, the ears work just fine. He can hear everything mechanically.... he just has trouble processing the sounds to split out the important from the non-important background noise. It is not a hearing loss.
                    The FM receiver helps, not like it would for a hearing impaired person, but by amplifying the important stuff so that it's easier for him to hear the speaker above the background.

                    It sounds like your son's case is much more severe than my son's, so I really can't understand what he's up against..... but my guess is
                    as long as his WEBELOS leader and Scout Master understand the problem I would think that he would be just fine. He's gotta learn to deal with real world situations and scouting is another great opportunity for that. I suggest giving the leaders a short bullet list outline of the tips and tricks of things your sons need to do....
                    - Sit in the front of the room
                    - attend to the speaker
                    - PA systems really help, especially in rooms with bad acoustics.
                    - etc.... You probably know them all


                    Just my unprofessional observations of watching my wife work with my son and watching what he does in different situations .... I think the minor level APD that my son has is really a lot like a "typical boy". I've all seen the boys that have "selective hearing". How many times have we heard wives complain about husbands doing that.
                    I'm pretty sure I have it in a minor way, just never knew it had a name, as I've always struggled to listen to a speaker if I'm sitting in the back of the room or in noisy environments. I have a naturally learned tendency to just do many of the things that my wife says my son needs to do.....

                    Ask your speech therapist about a computer program called Fast forWord. I think this is the link
                    http://www.scilearn.com/products/
                    Something my wife as a Speech therapist had access to. Used it for a year or so.
                    I gotta say it really helped my son to "train his brain". Doesn't eliminate the problem of course, but it helped.

                    Comment


                    • #12
                      Yes, an FM system can be helpful for someone with APD (in my family son #1 has APD, son #2, a toddler, is hard of hearing) but the speaker has to wear or hold a mic. I'm not sure how that would work in a patrol. Our son's APD seems to be relatively mild and he's been able to accommodate (in fact, I was surprised to see how well he did at summer camp -- it could be because he was motivated to do well), though I think he would have problems if he went to traditional school (he is homeschooled).

                      Comment


                      • #13
                        You can ease your concerns mom, one of my first Eagles was born totally deaf. To be honest, I can’t ever remember it being a problem for him because he can pretty much do what all the boys can do. He was much easier than learning disabled scouts. Our scout went on Philmont backpacking treks as well as canoeing in the Northern Tier. He could read lips well and believe it or not, spoke clear enough to fool people into not knowing he was deaf. So he had to remind people now and then they needed to look at him to read their lips. I remember him as one of my more cantankerous scouts because he actually was the one who like to tease other scouts. And then when someone would talk to him about his behavior, he conveniently couldn’t understand them. I had watched how he had no trouble in group conversations, so I called him on it and he was very embarrassed. He never pulled that trick on us again. He was a pretty good Patrol Leader, but leadership really wasn’t fun for him. Not because he was deaf, he just didn't like responsibility. The only time I saw his disability be a problem was on his EBOR. A day before his review, I called the Eagle Board Chairman to tell him our scout was deaf and needed to make sure they look straight at him when they spoke. But the chairman thought I was asking a favor, so he stopped me short of explaining the situation. Well long story short is that when the board members realized in the middle of the review that he was totally deaf, they were very flustered. He passed with only three questions asked. And I chewed them out later because he really was looking forward to showing off his skills. I have worked with many handicapped scouts and I always suggest to the parents and unit leaders that the parents should be involved to make easier on everyone. But from my experience at least, I will go out on a limb and say I don’t think a parent of a deaf scout needs to be present for their son to have a positive experience. Our scout had great parents, who would do anything for their son, but they gave him his independence in the troop and we never had a single problem that I felt having a parent would have helped. I also don’t like parents of disabled scouts to feel unit leaders are obligated to take on the baggage of their sons handicap. But again from my experience, a deaf scout who can read lips is not a burden on the leadership what so ever. In fact, they will enjoy the experience. True, you need to be a little picky on the unit and scout leaders, but your son is one case where just about any leader can handle the situation. I can’t imagine all the things going through your mind right now, as a parent this is so hard. But, I think your son can actually be the one to show you how to do this. I teach in the adult classes that the troop is the real world scaled down to a boys size. Your son is about to go through the physical and mental changes of becoming a man. I honestly can’t imagine a better place for all our sons to practice being an adult than in a troop. Scouting is a good place for your family. Barry

                        Comment


                        • #14
                          My general observation is that if the Troop has a bunch of older boys, your son will be ok. For the most part, the older boys are less tolerant of misbehavior and bullying than the younger ones (and even less tolerant than adults). Webelos isn't boy led. It is adult led, with some opportunities for youth decision making.

                          Comment


                          • #15
                            I think he'll do great. Find a troop that he is comfortable in. Explain the situation to the troop and patrol and the SPL. Monitor from a distance.

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