GeorgiaMom

9 minutes ago, RememberSchiff said:

Thanks. He is happy and becoming independent - finding his way, HIS WAY, which make him more happy.

Yep, HIS WAY.  I probably have Asperger's, too.  I was considered "unusual" in my teen years. I spent more time at Radio Shack than at the mall. I struggled socially in many of the same ways my son does now.

Fast forward.  I found a wonderful husband who loves me as is.  I'm one of very few geeky female software engineers in my workplace, and I love my job!  

I wish I had found MY WAY and the confidence to do what made me happy at a much younger age 

Your son is blessed to have a dad who loves him for who he is and just wants him to be happy. Way to go, Dad!

32 minutes ago, RememberSchiff said:

@GeorgiaMom congratulations to your son.  My son just wanted to be one of the guys.

Thanks, @RememberSchiff.  I hope your son is doing well, also.

I have a son with autism in Boy Scouts, and I emphatically would not want him used as a teaching aid to help the rest of the troop complete a badge.  He's come a long way in his social skills and speaking skills. He doesn't want to be singled out as different.  

Marginalizing Scouts as teaching aids is a terrible idea.  I'm glad my son just finished his Eagle project so we can be out of Scouts soon.

Love our local troop and the kids.  Exhausted trying to deal with our council. I finally quit volunteering early this year.  Gobsmacked at the greed and stupidity of national.

Hi Lori, and welcome! 

Your idea sounds great! I hope it works well for you. 

I proposed to my troop's leaders and parents that we ask the scouts to make and donate masks to a local school, as we are in a state of emergency where we live, and this is a needed service project.  I offered to buy and deliver all materials and coordinate the project. 

It went nowhere. One parent liked the idea. The other EP mbc in the Troop rejected the idea and instead gave a suggestion incompatible with social distancing.  The scoutmaster said he'd try to put something together after the pandemic was over. 

So, as the mbc is a council position, and I don't actually work for the Troop, I offered to organize this anyway.  

I've pasted my email to the Troop below with the links to mask patterns in case anyone wants to use it. 

I'm pretty frustrated.  I counsel over 20 different badges now because we keep losing counselors and nobody will step up to replace them.  Our council and district make it very difficult to get mbc applications approved.  They drop us every year and make us apply all over again fresh.  Last year, they lost my application, and it took months of phone calls from me for them to find it. 

I've lost all respect for the powers that be at the district, council, and national.  I do what I think is best now, and I've stopped asking what they think. They never return calls or emails anyway.  

I'm done.  The scouts are great. I enjoy helping them.  I love our troop volunteers, and I'm very grateful for how they've helped my son.  After 11 years of dealing with the paid staff at council, who aren't worth $0.02 between them, I've filled out my last form.  I just want to help my son finish his Eagle and be done. 

These are not normal times.  Adapting requirements to social distancing is appropriate and necessary.  I would expect the project I proposed below to take at least 3-4 hours, which is more than the scouts would spend doing a pretend drill at a troop meeting.

Good luck with your project, Lori. You sound like a wonderful mom. 

This forum has been tremendous help in my position as merit badge counselor. Thank you. 

Our troop has many boys, including my son, who need to complete requirement 7 of the Emergency preparedness merit badge.  We had a troop drill scheduled in March with another mbc that was canceled by covid. 

I'm a brand new emergency preparedness mbc trying to help the kids finish (along with about 20 other badges). As a voluntold merit badge coordinator over the last year, I have begged the other parents to step up and become MBCs, but none have. It's just the rapidly shrinking core of Life and Eagle parents. 

So, I need to come up with a way for the kids to do a virtual drill over zoom, and I have no idea what I'm doing. Do any more experienced mbcs have any ideas, please? Thanks 

How does one know a boy can't do a requirement unless he has tried? 

 

All this "up front" speculation is rather moot.  This is like cutting him slack before he starts.  I'm with @@scoutldr on this one. 

 

How long is this boy's autism excuse going to hold up in life.  Sooner or later he's going to need to step up to the plate.  Don't take away his opportunity to do better than what society has labeled him.

My son is on the high functioning end of the autism scale, so this subject is near and dear to my heart as well.  Scouting has been *so* beneficial to my son.  I will be forever grateful to the adult leaders who have given generously of their time and patience to help him grow.

That said, I have to point out a major problem with Stosh's reasoning.  The "how do you know until you try" attitude hasn't come up with us in Scouts (thankfully), but it has in drama at school.  It was an awful experience for our son and for us.  He finished the year, but he never wants to be in the school drama program again, which is sad as he enjoys drama and in general drama programs at our church and the county art center have been very good for him.

The problem was the teacher in charge who had the "how do you know until you try" attitude, which assumes that the child in question has never tried the skill before in a different class, group, or medical setting.  My child's autism might be new to you, but it's definitely not new to us. The teacher we dealt with who had this attitude completely ignored my concerns as a parent, and pretty much made my son miserable.  This is what I would like to say to her, but can't, since she's an 80 year old volunteer and pretty much gets away with anything.

"Ma'am, I know what my son is capable of, and what will result in many hours of frustration and crying, because I'm his mom.  I've been working with his disability for 11 years.  You met him last month for the first time.   On a weekly basis, I take my son to speech therapy, occupational therapy, and a social skills class.  We spend many hours with the audiologist and the developmental pediatrician.  Also, his teachers and the IEP team at school.  Here is his IEP, clearly specifying that what you want him to do (write long essays) is very difficult for him due to autism and expressive language disorder.  He's also catching up on his language development as we finally figured out after years of trying with various doctors that he can't comprehend about 40% of what is said to him due to neurological hearing issues (autism). 

So, ma'am, when you tell him to write you an essay (why are we doing this in after school drama?), it is a big deal for him.  He did do it, ma'am.  He did his very best, and worked very hard on it, ma'am.  I got your note about how it "wasn't up to 4th grade standards".  No shit, ma'am.  Really?  I gave you a copy of his IEP and tried to talk with you about it (you said it didn't legally apply to you).  His actual 4th grade teachers would never demand that he do what you demanded he do.  They understand his mental limitations in writing.  That's why he is in a pullout small group for writing with a parapro instead of the mainstream class.  He'd way above his peers in science and math (and chess and robotics), but yes, he's below grade level in writing.  It's called a disability, ma'am.  Autistic kids don't develop in the pattern you're used to across the board.  They can excel greatly in one area and lag way behind in another.

That's why he has a parapro, and accommodations.  He's grown so much in his writing skills.  That's a result of kindness, help, and attention at school and at home.  He didn't get there by being told that "he can do it if he tries".  You have no clue how hard my son works, lady.  He spends hours every week in classes and therapy to develop skills most kids take for granted.  "

She never did back off on making him produce that 4th grade level essay to her satisfaction.  She refused to see me to discuss my concerns.  I found out later that she had him pulled from his regular classes without my knowledge or permission during the school day and sent to the office so the guidance counselor could work with him one on one to produce this #%#$%#$% essay that she decided the world would end without.  I was tempted to file a formal complaint with the county, but decided it would do more harm than good.

All that to day, Stosh, you don't decide when pushing is appropriate, and parents have no obligation to argue with you about their child's medical limitations.  Suggest a challenge, sure.  Argue with me? Hell, no.

Vent over.  Just a window into the other point of view.  It is exhausting for my son and for me to keep proving to new people over and over and over that yes, he really does have a disability.  I am well aware of what he can do if challenged and what is beyond him at this time.  I'm not bringing him to scouts and staying with him for all the activities so we can scam the BSA into giving him bling he didn't earn.  I'm here to help him grow.  Please give me the respect of listening to me as the person who knows and loves him best as to when it is best to push and when it is best to back off.

And your "autism excuse" comment is way over the line.  It's a genuine medical problem, and you should treat kids and their parents with more respect. 

GeorgiaMom

I haven't read every response, but I get the gist that some are unhappy about the encroachment of "couch potato" activities into the Scouting program.

I'd like to offer another perspective as the parent of a child with high functioning autism who *loves* being a Scout.  Disability friendly activities like STEM can encourage involvement by scouts who might otherwise be intimidated if the program is too challenging.

I get that you don't want to see the outdoor challenge dumbed down.  I also know that the STEM portions of the program are a place where my child is comfortable and can build his confidence and relationships with the other scouts.  Then, he feels more confident about tackling the more challenging outdoor part of the program, which has been tremendously beneficial to him.

Instead of thinking of the less physically challenging part of the program as "couch potato scouting", it might be more helpful to think of it as "never leave a man behind".

Our family is very grateful for the way scouting has benefited our son,

Georgia Mom

I have been a professional author for over 20 years. I have seen how piracy is killing the careers and income of many content creators, including mine. I just want to say thank you to those who treat my work and the work of others with honesty and respect. GeorgiaMom

IM_Kathy, as a parent of an autistic scout with auditory processing disorder, I appreciate your concern about doing the right thing for your Scout. I hope we find similar advisors when my Webelo transitions next year.

FWIW, here is my take:

Neurological issues of any kind are complicated and may not make sense to volunteers or teachers. We are in a constant state of explaining what our son can and cannot do. We have dealt with this for years. Our son sees speech therapists and occupational therapists every week.

Our son has splinter skills, which are common in autism. He can do some things way above age level, and others way below age level. It often does not make sense to people outside our family and doctors. For instance, our son is very, very good at memorizing written scripts. He can do very well in drama. He delivers memorized written speech like memorex without stuttering, and generally without missing a word or a beat.

At the same time, he cannot process auditory information well at all. We had a drama teacher once who insisted on not writing the script down because she wanted the freedom to keep changing it. :-( She insisted on telling our son his lines orally, and just could not understand that his brain is not capable of processing information received in that manner. It frustrated our son to tears, and he ended up quitting.

The upshot is: please listen to the parents. They spend a lot of time with doctors and therapists helping their child do his best. It doesn't matter if it makes sense to the volunteer. It is exhausting explaining the entire medical rigamarole to every volunteer, and occasionally having to argue about it. It is very hard on the child to have to prove yet again that he really can't do certain things. Please just accept it when the parents say "my son can do this, but he can't do that". (can you tell we've been dealing with a very frustrating volunteer this year?)

It is my understanding that Scouts are a developmental organization, designed for inclusion of disabled children, hence the "do your best" requirement. Our son absolutely loves being a Scout, and it has been good for him. We are currently looking for a Boy Scout troop that will be a good environment for our autistic son. Our biggest question is the willingness of the volunteers to listen to us, and understand what our son can and cannot do.

My fear for my son is that he will have an experience similar to a friend's. Her son is also autistic, and has tremendous difficulty writing (as does my son). In her son's troop, his merit badge counselor insisted on written reports for every badge. It was exhausting. Her son quit. It was very sad. I understand what her son went through because I know it takes my son 4-5 hours to produce a single written page.

I am disturbed by the comment that the child isn't interested in Eagle, he just wants to be a Scout. Why is this wrong? For some kids, especially disabled kids, the learning experience and social environment are the goal, not the bling on the uniform. We look to our son's den as the cream of the crop among the little boys at his school, where he can learn social skills without being bullied or teased. That is a valid goal.

It should come down to what is best for the disabled child. I've been told many times that Scouting can be a wonderful developmental environment for disabled children. Please let it be that for this child.

Thanks for volunteering your time with the kids,

GeorgiaMom

Jblake47, good job teaching your daughters to protect themselves. My own daughter is in jiu jitsu.

I think your daughter said it best:

"No problem, I avoid problem areas and know how to take care of myself."

In my mind, a crew where girls are groped and the leadership does nothing is a problem area to be avoided. Ditto any group where a child is sent to the hospital and nothing is done.

I hope scouts can maintain a better environment than this for kids. How do you teach skills and values to kids when they don't even feel safe?

Ga mom

It wasn't my intention to misuse the term "Asperger's". My son has only been diagnosed for less than a year, and I am definitely climbing a steep learning curve. He has other learning disorders, including auditory processing disorder and dysgraphia. It is hard for me to know sometimes where one disability stops and the other starts.

Thank you, RememberSchiff, for an excellent description. My son is also great at visual learning, but terrible at auditory learning. It is very frustrating when a child can repeat pages he has read verbatim, and yet cannot repeat back a 3 item list that is spoken to him. Nevertheless, this is part of the problem my son is experiencing.

I see nothing wrong with expecting parents to help their own child with learning disorders. I doubt that most parents of LD kids are trying to wear out the volunteers with extra work. I've always asked for resources so I can give my child extra help at home. Mostly, I'm looking for understanding.

Thanks,

GeorgiaMom

Thanks, Perdidochas. I should clarify that it is not my intent to bully any volunteer by requiring they follow my child't IEP. That's much more legalistic than what I had in mind.

I wish we could find a reasonable compromise between the admittedly granular and legalistic requirements in an IEP and the whim of an MB counselor who told my friend that learning disabilities are just a crock, end of discussion. It is very frustrating as a parent to constantly have to prove that your child really does have a legitimate issue, and I wish there was a reasonable way to provide documentation.

I am happy to hear that the emphasis on producing massive amounts of writing for every MB might just be a personal decision by this particular MB, not the organization as a whole. I will explore further.

Thanks!

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

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

Sending a boy to the hospital is a big deal. So is the groping of girls in his Venturing crew. This boy's exit is already overdue. I would not allow my son or my daughter to remain in an environment in which they are treated in this manner.

As the mom of a Webelo considering whether or not he should progress to Boy Scouts, I look carefully at reports like these. I find it unimaginable that it happened at all, much less that any organization would consider keeping a member like this.

If packs, troops, and crews continue bowing to kids like this, and their parents, soon this type of kid is all you will have left. Is this what you want Scouting to become?

FYI, in my state (Georgia) we have a relatively new state law requiring that anyone working with children report suspected cases of child abuse to the police within 24 hours. Where I live, the troop/crew leader would not have the option of deciding whether or not to report it to the police. I don't know about the laws in other states, but it would be worth googling "mandated reporter".

GeorgiaMom

Hard to imagine a worse response from the BSA. A "good civics lesson"? I would be livid if my child had been held at gunpoint like that.

GeorgiaMom

 

That said, if the boys in your troop we're willing to hike with the panels/inertial dynamos to keep your CPAP batteries charged, and dig you and your daughter a pit latrine, would you take them up on it? If not, that's okay. But in the healthy development of a boy (as envisioned by many of us) there will come a time when we need to let him leave us at the trailhead.

To their credit, a couple of EE parents did their darndest to get my CPAP to work on the only time I did take it on a campout. They got the blower working on a car battery, but not the heater. I just couldn't sleep with freezing air blowing in my lungs, so I basically stayed awake all night. That's the last campout I went on. I've researched thoroughly with my doctor, etc, and if there's a way to make a CPAP work on battery power, we can't find one.

I doubt my daughter would go for a pit toilet, but thanks for the suggestion. I think the whole culture of our pack has issues. The two male leaders don't show much common sense or consideration for the women they ask to help, and they shouldn't be surprised that our ranks are shrinking.

Two years ago, they took over a pack with 70+ kids. After their first year in charge, it had shrunk to 20 kids. I have no idea how many might show up next month. I only help at the den level now, never again as a leader. Too many emergencies on my part due to a lack of planning on their part.

I see your point about primitive camping being good for the boys. It's just going to take a minimum number of male leaders to step up and make that happen, as most moms with babies and younger siblings aren't prepared to deal with it. Hopefully, more dads in our own pack will step up.

GeorgiaMom

I should probably just find another pack. Ours is run by two men (cc and cm) and three women. It was five until my friend with the newborn and I quit. I felt like the pack scullery maid. The female leaders did *all* the cooking, cleaning, hauling, shopping, paperwork and fundraising, while the cc and cm ran the pinewood derby and basically relived their own scouting childhoods. Of the five women who stepped up, all had younger children and babies. Sorry, but my three year old daughter just won't use a cathole in the woods. Fact of life: most women, especially those with young kids and babies, just aren't comfortable with primitive camping. Honestly, to ask me to wear six different hats to support the pack and then complain about my cpap machine and little daughter just shows a total lack of class. If men want this primitive experience for their boys, then they need to step up and actually do all the work to make that happen. Georgia Mom

Dear chagrined Chair, I had a similar experience when volunteering at church years ago. It is dehumanizing. I get it. He is married. You are married. You're a mom volunteering. He has no business whatsoever behaving so crudely toward you. As a parent, I also would not want this lech mentoring my son. Ick It's not a petty concern, even with the cor's heart attack. They are two separate issues. The co should appoint an interim cor. In the meantime, there must be someone with the co who can hear your concerns. It sounds like the whole troop is a mess. If you can, I would consider finding a different troop. It isn't your responsibility to fix all this by yourself, and it sounds like the other parents aren't willing to step up and help. Good luck, GeorgiaMom

...There's not much adventure at the end of an electric cord nor lay there meadow crashing to the hum of someone's cpap machine.

 

So then this all boils down to the least common denominator. Radisson Ranger Camps for everyone! No cost spared, must meet every and all contingencies and in the game room is just around the corner, both figuratively as well as literally.

 

Sorry, but for the sake of the boy's and their potential for adventure, if my situation doesn't allow for it to happen, I'm going to not stand in their way. People make it sound that the vast majority of adults need medical assistance to get through a camping experience. Are we really all that feeble? If so, why are we in scouting?

 

Stosh

Yes, I have a medical issue. The pack leaders still asked me to do six different jobs last year because they badly needed the help.

Why am I in Scouting? Because my autistic son absolutely loves being a Scout, and I want to make that happen for him.

Honestly, the sarcasm here has gotten on my last nerve. I have also received some good advice and support here, which I appreciate, but lately it just isn't a friendly environment for anyone who doesn't fit the mountain man/boy mold.

GeorgiaMom

Foster children cannot be photographed in Georgia under dfacs regs. I was asked to remove several photos from the web over this, even with private links only for the parents.

GeorgiaMom

Some leaders have medical issues and cannot use the primitive camps. I and another parent in our pack had to stop attending campouts where no electricity is available for our cpap machines. It isn't always about convenience.

GeorgiaMom

Thanks for your efforts, Christineka. As the parent of an autistic scout, I can say that I wish all Scouters saw things your way.

I had a similar discussion recently with the director of my child's church play. She offered a way to make participation easier on him as he was clearly struggling. I thanked her for making "the play about the kids instead of making the kids about the play.".

At our former church, a different director had my son in tears as he absolutely couldn't understand her verbal instructions in a loud, crowded room, and she refused to provide a written script. She said written scripts caused her problems when she needed to make changes. She changed the script so often, I couldn't follow it either.

If a kid can't hear/see/walk/hike/etc, standing firm on the scout handbook will only drive the kid away. I find it hard to beleve that's what BP had in mind. Absolutely accommodations need to be made for a child's disability.

Scouting is suppose to serve the kids, not the other way around.

GeorgiaMom

.... Medical practitioners and others have recognized that scouting can be good for kids facing social challenges and other challenges. So scouting becomes a treatment option.

Scouting is not a treatment option. I just got back from one of my son's weekly treatments. $300 a pop with a PhD who has 20 years worth of professional experience treating kids with autism and auditory issues.

The idea that scouting is a treatment for any medical condition is ridiculous. We take our son to medical professionals for that.

What we do hope for from scouting is an environment free of bullying. I want my son to simply be able to take part to the best of.his ability. He is quiet and gentle. His biggest sin is that he sometimes can't hear the leader and that he has poor gross motor skills. I fail to see how he has negatively impacted any of the other boys.

We will likely be dropping out of team sports this year. My son loves basketball, and had been involved in a small church league for the last 4 years. He loves it and does his best, but he isn't a star athlete.

Last season was awful. None of the other boys would pass to him during games. On the rare occasions when he did actually get his hands on the ball, one teammate would constantly grab it.out of my son's hands so he could get yet another basket. My son effectively was blocked from playing.

I asked the other kid's mother to ask her son to stop, and explained that my son has a disability. Her reply? "Why shouldn't my son do his best because of your kid?". How Christian of her.

I'm not going to institutionalize my son or pull him out of scouts because of his disability. Anyone who thinks we're too inconvenient to have around can pound sand.

There but for the grace of God go you. Your child is one car accident or bad fall.away from dealing with the medical, educational, and financial.burden we deal with every day. Try to extend the same grace you hope you would receive in our shoes.

GeorgiaMom

Jblake, you seem to have forgotten your scout spirit. "Institutionalize" is a harsh word to throw out to parents dealing with very real medical problems in their children.

I do worry about my autistic son. I worry about the physical bullying he's already run into in elementary school. I worry about drugs and God knows what else in middle and high school. He is the sweetest little boy. No trouble at all in scouts or school, just vulnerable due to a medical condition he can't help.

I wish scouts would make up their minds. Some tout the program as a safe haven for disabled kids to grow, where a higher standard off behavior is taught and expected. Others, like jblake, say it's a real world environment where drug dealers are a normal part of life.

If an adult sold or gave illegal drugs to a child, he would be in jail. Why should a minor get a free pass? Is the scout in the op such an innocent that he didn't know drugs were illegal?

If the scouts aren't committed to teaching and expecting a higher standard of behavior than the local public school of ymca, then why does it even exist? For the pretty uniforms and overpriced camps?

GeorgiaMom