Autistic scouts

[OldGreyEagle]

After reading this thread over again, perhaps some are taking the wrong tact

 

Ahoydave, I am sorry you and your son had the experience you had. It was not one you would have had had you been in the Troop I serve. It does not appear to have been the type of experience you and your son would have had if you were in some of the other poster's troop.

 

The sad reality is, your experience was your experience and all the nifty stories we have are antedoctal. Scouting is local and nothing we can say will alter your experience. I can only ask you accept assurances from myself and others here that Special Needs kids are welcomed into troops and Councils find ways to accomadate youth with special needs. I have never seen a bias against special needs kids in the BSA, but I can't speak to your perceptions. I only wish the best for you and your son and hope you have some good memories from the program

 

[Ahoydave]

The reason I brought up the issue on a national forum is BECAUSE the support is local and more a matter of luck. Without national incentive, it will remain local and only exist if a champion of the cause can make it happen and maintain it. Such champions must also be charismatic or properly connected to succeed.

 

In an earlier post, there was an article mentioned and when I read it some time ago, it lifted my spirits as it came out during a time when the social support my son was getting in scouts was beginning to fade. The "new" had worn off. Yet another summer camp had left off many of his accomplishments and badges he had earned twice would not be awarded until he did the work yet again. Since my son had been first class for a long time, his advancement now required some of these badges. The new adults in his troop did not have documentation of the work and rules are rules. I considered trying to find another troop but it seemed the lack of interest had more to do with his age and it would do nothing to fix a problem already supposedly fixed before. Changing troops would not benefit enough to justify the move. How many 11-15 year old kids will be motivated to include a 18+ year old socially? Some people need a reality check.

 

As for my activities in scouting, I am involved in Special Olympics and other sctivities so I am not leaving service to the community. I sinply don't feel that welcome. My attempts to suggest service hours, projects and eagle projects for challenged people fell on deaf ears. There is one troop in a nearby district that volunteers for a Special Olympics swim meet because its leader's son was involved. Other wise, its pretty much no interest. My involvement has been dominated by being there for my son as everyone else expressed concern that they had no idea what he could or couldn't do and it would be best if I stayed with him. At least they accepted that could backpack with the very best. In reference to the earlier articles and response letters, I see no difference in my experience and that described except my experience lasted longer to see where it ends. At least I am taking the time to argue for improvement even though I fully expected the gauntlet I would face doing it. Resistance to change in "perfection" does not come easily. Ivory towers take a lot of pounding to break them down.

 

 

[ffemt92]

Good morning fellow scouters,

To add my opinion to this discussion, I would like to talk about 4 boys in my pack, 3 of which will be bridging this March. One of them is my son who has Aspergers(Austic Spectrum), ADHD and SID. Having this in my home has benefitted me greatly as a parent and scouter when working with these boys. I have seen though, leaders and parents who have little tolerance for these boys in our pack and other units. Not to be disrespectful to anyone, but at times there seems to be alot of unintentional ignorance in this area. That being said, I'm not saying that every CM or SM should take classes, but self education goes a long way. I'm sure there are even District's out that there do not have a postion for 'Scouts with other abilities' filled. I do agree with the gentleman that made the comment about feeling 'slapped in the face' about the disabilities merit badge. The majority of scouts that have things going on cannot be seen. These scouts often bring a perspective to the table that bring out the best in a situation or idea unthought of. An active parent in the unit is a god send. As some of us my not feel comfortable speaking to parents, but if we even notice on the registration form that a scout has 'other abilities' speaking to mom or dad privately may help everyone. This way we can convey to them that we are there to help and any information about 'triggers, mental shut down or fears' can be of great help.

That being said about parents, one other point is that some parents may put their children on a medicane vacation. One of the boys in our pack has been on this 2 summers in a row. Having known him for 3 years, I know what his ticks and triggers are. However, when the Webelo DL and I find out 2 days into day camp that his parents stopped his meds we get frustrated. Not at the scout but at the fact that he told us this and not the parents. To make matters worse, neither of the parents were there. It had gotten to the point with his actions, that our pack committee even discussed the item of mandatory attendance of a parent when a scout is not on their meds. We primarily brought this up because when the DL and I weren't around this scout to keep an eye on him, he got into trouble at camp.

All of this being said, scouting as a whole needs to take a step back and realize that there are probably thousands of scouts that have one thing or another going on that cannot be seen. As scouters and parents, we need to do our best to ensure that these scouts are treated the same as everyother scout. Thank you for your time.

Respectfully,

Rob Ehrhart

Pack 172 CM

 

[ASM915]

AhoyDave,

 

Before your son was tapped out, had he attended a tap out ceremony?

Did you talk with any of the Lodge leadership about your concerns about your son and Ordeal?

My son falls into the autistic spectrum. He had seen at least three ceremonies. He wanted to be in OA, but felt he would never be elected. He was excited when he was. he couldn't wait for Ordeal. We had several talks about how he would be required to stay silent for 24 hours, which with Dan staying quiet for one or two minutes is nearly impossible. Luckily for us, several of the Lodge leadership knew Dan and were aware of his issues going into Ordeal. To all of our suprise, Dan didn't mutter hardly a sentence the whole 24 hours.

See about having your son renominated and tapped out again. Talk with the Lodge leadership and ceremony team, so that maybe your troop and son can be located in a special spot so the team knows this is the scout they nedd to handle differently and gentle. Work something out with the leadership for Ordeal ahead of time. Maybe there is an Elongomat on the team that has SN experience, or that your son may know that could be his aide if needed. If your not in OA, maybe you can go through it with him, then you and your son assist the Lodge with other SN scouts coming through.

Also, when our troop lost most of the older scouts aging out and became a very young troop, it took the younger new guys about a year to figure out and get use to Dan.

 

tagguy,

Sorry, I just came across your post. I'll have to assume that this boy has crossed over or quite. Here are a few suggestions for the next time you are presented with this situarion.

 

1. I would try to have a sit down with the parents, present DL and the SM to discuss corssing over and what their needs and expectations are from the troop. You can talk with the DL about how he handle situations. You can tall the parents how you think things will work.

 

2. Invite the parents and the DL to a meeting with the troop leaders (SM, ASM's SPL JASM's) to cover the information from the first meeting with them.

 

3. Maybe there is a scout in the troop that may know the boy and family and would be willing to help him. It would actually be better if there were two or three scouts. That way if one was absent from a meeting, he would still have someone he would be comfortable with at the present. This would also give the three of them a chance to switch off if needed during a meeting or outting. This would have worked well in the old days when the Dens were mixed age and not by grade level.

Does your troop have a Dne Chief working with the Den that the boy is coming out of that may be able to take him under his wing until he gets use to new group?

 

 

 

 

[ASM915]

AhoyDave,

 

Before your son was tapped out, had he attended a tap out ceremony?

Did you talk with any of the Lodge leadership about your concerns about your son and Ordeal?

My son falls into the autistic spectrum. He had seen at least three ceremonies. He wanted to be in OA, but felt he would never be elected. He was excited when he was. he couldn't wait for Ordeal. We had several talks about how he would be required to stay silent for 24 hours, which with Dan staying quiet for one or two minutes is nearly impossible. Luckily for us, several of the Lodge leadership knew Dan and were aware of his issues going into Ordeal. To all of our suprise, Dan didn't mutter hardly a sentence the whole 24 hours.

See about having your son renominated and tapped out again. Talk with the Lodge leadership and ceremony team, so that maybe your troop and son can be located in a special spot so the team knows this is the scout they nedd to handle differently and gentle. Work something out with the leadership for Ordeal ahead of time. Maybe there is an Elongomat on the team that has SN experience, or that your son may know that could be his aide if needed. If your not in OA, maybe you can go through it with him, then you and your son assist the Lodge with other SN scouts coming through.

Also, when our troop lost most of the older scouts aging out and became a very young troop, it took the younger new guys about a year to figure out and get use to Dan.

 

tagguy,

Sorry, I just came across your post. I'll have to assume that this boy has crossed over or quite. Here are a few suggestions for the next time you are presented with this situarion.

 

1. I would try to have a sit down with the parents, present DL and the SM to discuss corssing over and what their needs and expectations are from the troop. You can talk with the DL about how he handle situations. You can tall the parents how you think things will work.

 

2. Invite the parents and the DL to a meeting with the troop leaders (SM, ASM's SPL JASM's) to cover the information from the first meeting with them.

 

3. Maybe there is a scout in the troop that may know the boy and family and would be willing to help him. It would actually be better if there were two or three scouts. That way if one was absent from a meeting, he would still have someone he would be comfortable with at the present. This would also give the three of them a chance to switch off if needed during a meeting or outting. This would have worked well in the old days when the Dens were mixed age and not by grade level.

Does your troop have a Dne Chief working with the Den that the boy is coming out of that may be able to take him under his wing until he gets use to new group?

 

 

 

 

[Ahoydave]

My son and I have not been involved in scouts for a couple of months now. It makes it easier to reflect on the experience. Not once in the years he was in scouting was my son involved in a flag ceremony. It sums up his scouting career. I do recall asking on several occasions but it never happened.

 

I tried to explain to the leaders in the OA tapout ceremony that my son runs from what he feels is anger. If it were not for one of his fellow scouts in the ceremony, it would have ended badly as the shouting in the ceremony went on as usual. The fellow scout went on the serve in Iraq and like all the scouts of my son's peers, they all moved on. There was no interest in including my son among the younger scouts or their parents. Having been through "ordeal", I felt it would be completely wrong to have him suffer through the hazing. His older brother, an eagle scout, agreed with my decision.

 

There needs to be incentive for others to care at the national level. Without such incentive, much, if not most, of scouting becomes a line on a resume for one's self, not for a character program for society. I gave it 15 years and tried. There are other places where my time actually does some good.

 

[Ahoydave]

To keep this topic alive, it's time for an update.

There are about the same number of autistic kids in the US as the total number of scouts and scouters in BSA. When today's scouts are in the workplace, they will be supporting 7 million autistic adults. In my experience as a volunteer with Special Olympics, it has become very clear that the best thing that can be done to help these people integrate into society and even help pay their way is to be included. The only successful treatment to date for autism has been intense socialization.

 

Earlier in this thread, I described how my son was tolorated but not really included. As an example, in all the years, he never participated in flag ceremony despite my requests that he be included. After a while, I grew tired of the "next time" promises. The repeated lost merrit badge records were down right agrivating. It not only occured within the troop but at summer camps. I wasn't assigned advancement duties as I was usually assigned to oversee the problem kids. Maybe I should have insisted on those duties so I could find when my son's records were missing.

 

The troop had a disabilities awareness badge class when I was out of town with my son at a state Special Olympics meet. Pretty much all the scouts that could draw a wheel chair were recognized as having a strong awareness of disabilities through the merrit badge. When I found out what had happened, I was ready to vomit. You would think a certified Special Olympics coach would be consulted when the troop he is an ASM with was working on this merrit badge. If it were up to me, the merrit badge should be discontinued in its present form. My son is very aware of being different and would like to be included instead of simply being tolorated. My son is far more "disability aware" than his mostly younger peers who "earned" the merrit badge he did not.

 

Until BSA makes it a national policy to recognize those who put out the effort to include special needs kids, such efforts will remain strictly local and based on luck.

 

[ASM915]

Dave,

I hear you loud and clear. They probably thought that you would bring to mch to the mB, and the kids would have to work a little harder to get it, instead of being able to skate through it easily.

 

My son is now 18 and registered as a Scout For Life. He is sensitive to the fact that he is tolerated, but frequently left out by the younger scouts. Other then him and two 17y/o's, the age drops to 13. He likes the troop, but asked asked about the possibilty of joining a neighboring troop that has three or four SNS, and whose leadership works with them.

 

As for our troop, he is the OA Rep. He is active at the chapter level, and the younger members are willing to accept him. He is also the Chapters Vice-Chief of Activities. We discuss ideas for activities, and figure what needs to be done. I then write down what we discussed on how to proceed. He then makes calls, and asks questions that we have written down, gathers information, takes it to the chapter meeting for everyone to discuss, and then he sets it up , or asks someone else to handle the details. I then help him put a letter together to email out to the members. At OA, he gets more of a chamce to act as a leading, more then he gets in the troop. He asked the Lodge chief if there was a position he could fill at the Logde level. The chief,, knowing that Dan liked history and photography, asked him to be the Lodge historian, and take pictures at all the events that he attends, and sumbit the photos to the newsletter.

 

The tropp maynot provide the leadership opportunities for your son to shine, but OA may give him the opportunity.

[ASM915]

Dave,

I hear you loud and clear. They probably thought that you would bring to mch to the mB, and the kids would have to work a little harder to get it, instead of being able to skate through it easily.

 

My son is now 18 and registered as a Scout For Life. He is sensitive to the fact that he is tolerated, but frequently left out by the younger scouts. Other then him and two 17y/o's, the age drops to 13. He likes the troop, but asked asked about the possibilty of joining a neighboring troop that has three or four SNS, and whose leadership works with them.

 

As for our troop, he is the OA Rep. He is active at the chapter level, and the younger members are willing to accept him. He is also the Chapters Vice-Chief of Activities. We discuss ideas for activities, and figure what needs to be done. I then write down what we discussed on how to proceed. He then makes calls, and asks questions that we have written down, gathers information, takes it to the chapter meeting for everyone to discuss, and then he sets it up , or asks someone else to handle the details. I then help him put a letter together to email out to the members. At OA, he gets more of a chamce to act as a leading, more then he gets in the troop. He asked the Lodge chief if there was a position he could fill at the Logde level. The chief,, knowing that Dan liked history and photography, asked him to be the Lodge historian, and take pictures at all the events that he attends, and sumbit the photos to the newsletter.

 

The tropp maynot provide the leadership opportunities for your son to shine, but OA may give him the opportunity.

[mattman578]

I have a son with HFA he is 7 just revived his tiger badge and boy was he happy he sang as he walked across the bridge at graduation. I was his den leader this year and changed troops now I am not going to be his den leader I am taking on another den. I told his new den leader what was going on with Trevor and the look on her face never changed. I did not see the OMG what am I getting in to look at all.

As I read these post I am always amazed how each leader on here has a scout that is in the same boat as my son and I thank all of you for working with them. My son really thrives in the scouting life it helps him come out of his shell and interact with other kids and lessen his screen time. And no body cares that he spends two hours playing with the flash light by him self on camping trips but they are all happy when he decides to join the group.

 

I am trying to be and involved parent with my son's pack. I have made the decision to always be there on the camping trips at at least in the building during den meetings. I know the people working with him are volunteers and not trained or getting paid to deal with him so I always tell them I am with in shouting distance just in case.

 

Please always talk with the parents I give the information on fixing issues with my son to his leaders right up front. His magic triggers are counting (by three he always stops what he is doing and starts doing what you want it is like magic) and the phrase "the rule is____" and the scout sing all stop him dead in his tracks. from what I hear and have read all HFA have magic thinks that they respond too find those and your life will be a lot easier. As for irrational fears he is afraid of the vacuum cleaner so that is not an issue on camping tips (or my house for that matter)

 

Scouts is not for every kid ether disabled or not out Psychologist almost wrote us a prescription for Cub Scouts.

[Fox 76]

We had a Scout in our Troop who was asocial, lacked empathy for others, and occasionally expressed unusual behavior or dialog. He disliked camping, and during a BOR he told us how much he hated all of the other Scouts in the troop. However, he functioned highly on an intellectual level. We never considered him to be a problem, and simply considered him to be somewhat droll. He was never treated any differently by the Troop leadership, until his father started doing Merit Badges for him, and we called them on it. Then it blew up in our faces. It turns out that he had Aspberger's Syndrome, a fact that was kept from us, and we were threatened with a lawsuit, etc.

 

My point is that adult leaders have to be made aware of and educated about these things up front by the parents.

[RememberSchiff]

My point is that adult leaders have to be made aware of and educated about these things up front by the parents.

 

I wish it always worked that way but I have rarely found that new parents voluntarily come forward with this information. We have to be proactive and ask them directly, perhaps as they complete the joining application and again when they submit their scout's Health Form.

 

As a unit, we need policies that reflect our abilities and comfort zone as leaders. In the process, we may recognize the need for required parent involvement, further training or additional help for this scout to participate, or we may realize that our unit cannot serve this scout (feel sad but not guilty)

 

For prospective new scouts, I try to ask both parents, hopefully separately and in a friendly way, that I need a heads-up in working with your scout. Usually my questions flow this way, first I ask "Every kid is different. What are the most important things that I and the troop needs to know to successfully work with your son?" Listen.

 

If the following information was not revealed, then I probe further.

- behavior issues, anxieties

- food allergies

- friends in the troop, past issues with making friends, bullies

- special needs

- IEP (individual education plan), if so tell me more.

- school problems

 

Time consuming, not perfect, and it has to be done in a friendly way, i.e., no interrogation.

 

My $0.02

[perdidochas]

We had a Scout in our Troop who was asocial, lacked empathy for others, and occasionally expressed unusual behavior or dialog. He disliked camping, and during a BOR he told us how much he hated all of the other Scouts in the troop. However, he functioned highly on an intellectual level. We never considered him to be a problem, and simply considered him to be somewhat droll. He was never treated any differently by the Troop leadership, until his father started doing Merit Badges for him, and we called them on it. Then it blew up in our faces. It turns out that he had Aspberger's Syndrome, a fact that was kept from us, and we were threatened with a lawsuit, etc.

 

My point is that adult leaders have to be made aware of and educated about these things up front by the parents.

 

Lawsuit? What for? You're volunteers.

[GeorgiaMom]

Dear Fox 76,

 

I'm so sorry to hear about how the father of your Asperger's Scout is treating you. It's awful that a lawsuit is being threatened. Thank you for volunteering your time with the boys.

 

As the mother of an Asperger's Webelo, I have a few thoughts:

 

1. I love the gentle and nonconfrontational approach RememberSchiff described. I understand the trepidation a parent can have about being "out" with their child's intellectual disability. I haven't yet told my son's den leader, although I know I shouid. It's scary. I don't know how he may react. RS is describing a great way of establishing a friendly and trusting relationship with all the Scouts' parents so that he can create an environment of safety for the parents to talk about their son's disability.

 

2. I got very discouraging news from the parent of an older Scout the other day who has dropped out of Boy Scouts due to his intellectual disability. Like my son, her son has extreme difficulty with written and spoken language. My son has a high IQ and is terrific in science, chess, building things, etc. He has great difficulty speaking or writing about what he has done.

 

My friend's son got an MB counselor who insisted he write out what he had done in detail with no help from his parents. He couldn't do it, and quit Scouting altogether. My friend said the MB counselor didn't care to hear about her son's IEP in school or learning disability. If my child had that counselor, we'd be in the same boat.

 

When you say "the father started doing his MB for him", Fox 76, are we talking about helping a learning disable child with the portion he can't do (writing?), or truly doing the whole thing for him? My son can build you a working trebuchet, but he truly can't write above a kindergarten level. What do we do in cases like this?

 

3. We are blessed that our son does not lash out or scream when he feels overwhelmed. He just zones out into his own imagination very quietly. It does make him appear unfriendly. The truth is he gets along very well with one or two good friends at a time, but a large, loud, busy group is just too much for him. What do we do?

 

I am seriously considering whether we should make the jump to Boy Scouts next year. I would appreciate hearing constructive advice from Scouters as to how this has gone for them. I have already had some great responses to earlier questions on this board, thank you. I am specifically interested in how to deal with the MB writing issue that caused my friend's son to quit.

 

Thanks,

 

GeorgiaMom

[GeorgiaMom]

Perdidochas, the lawsuit might be via the Americans With Disabilities Act. A mental disability like Asperger's or autism is no different than being in a wheelchair in the eyes of the law. Businesses and groups that serve the public are required to make "reasonable accommodations", such as allowing the father to help with those portions of an MB the son can't do.

 

As the mom of a learning disabled child, I understand the father's frustration. To put it another way, would you object to the father pushing a wheelchair bound son on a hike to help him earn his Outdoorsman badge? If not, then why object to a parent helping a child do the written portion of a merit badge when he has a medical disability that causes him extreme difficulty?

 

It takes my son 4-5 hours to write a one page report. I'm not kidding. He can speak the answers to me very fluently, but when it comes to writing it down, he just can't do it. The school has tested him thoroughly and set up accommodations for him.

 

I understand my friend's frustration with her son's MB counselor. Her son's MB counselor just dismissed his learning disabilitiy and made no accommodation for him. These disabilities are thoroughly tested and documented. It's difficult when you can't point to the part of your child's brain that doesn't work in the same way you can point to a wheelchair. It's hard to prove, especially to a volunteer who may have no training in learning disabilities.

 

Would it be too much to ask for a pack, crew, or troop to at least accept and honor a child's IEP from school for a documented learning disability?

 

GeorgiaMom