Autism II

[Twocubdad]

Looks like the server scrambled my thread asking for advice on dealing with an austic boy joining a Tiger Den. ItsTrailDay, who has some experience in the area, e-mailed me asking for more specifics. Here my reply:

 

The boy is 6-years-old and joining our Tiger den. He seems to be very withdrawn and has very little interaction with other people. He is not at all aggressive or violent. He's started talking only in the past few months. His mom says he is on the level of a 3-to-4-year-old. Actually, he's a little guy, and if you didn't know anything about him, you would just assume he's an average, quiet 3-or-4-year-old kid.

 

He has a "shadow" who works very well with him and could come to most meetings with him. Unfortunately, she's going away to school in January and will be leaving. My judgement that he would not be a disruption to the den, but there may be some activities that wouldn't be appropriate for him.

 

His mother is another story. She is very assertive and "in-your-face" about her son, which I can understand and certainly have empathy for her situation. But she somewhat scares me. She's called me six times in the past four days asking what we're going to do. In fact, the potential den leader (a husband-wife team) has said they will take the boy, but only if we get them an assistant den leader who would be a "witness" if there are any problems. That's the level of concern that this woman generates, that people immediately start worrying about legal liability around her. It's hard to explain this in a short e-mail without sounding petty, but some of the other people I've spoken with who have worked with this family confirm my concerns about the mom, so I don't think we're too far off base.

 

My concerns as Committee Chairman is that we provide a good Cub Scout program to all the boys in the den and that one child (and especially one mom) doesn't detract from the program. Secondly I want to protect my den leaders from a lot of unnecessary abuse from a parent. They've made enough of a commitment just being den leaders.

 

Honestly, I think the boy will do fine in the den and will be an asset to the unit. It will be a good experience for the other boys to make friends with another Scout with a disibility. As a unit, accommodating the boy is something we need to do. I just don't know how to deal with the mom. I feel like we need to set up some ground rules with her, I just don't know what they should be.

 

Any advice?

 

* * * * * *

 

If looks like several of you tried to reply to the other thread. If you would be so kind as to repost your info here, I will appreciate it. Thanks.

 

[Eamonn]

For my Queens Scout service project, I worked at the then Cheyne Walk Center For Spastic Children in Chelsea.

There were about sixty little ones there with an assortment of handicaps. We did get a pack up and running.

This side of the pond. In our district there is a school for Special needs Kids.

Working with the School District, who is the Charter Partner, we have a pack to serve these boys. It is an after School program, and the School does provide transport to bus them home.

The Leaders are parents who are supported by some of the teaching staff.

My feelings are that most of our volunteer leaders do not have the training to undertake this big of a challenge.

A lot of people will make the argument that it is better for everyone if we mainstream, but depending on how bad these boys are handicapped it can be just more then we can manage.

Add to this your feeling about the Mom.

I think you might be better off to contact your DE, or the person on your District Committee in charge of starting new units and see if there is any way of starting a Special Needs Unit for these Boys.

Some of the Lads in our Special Needs Pack are over the age guidelines, and while they would not be able to manage Boy Scouts, they enjoy and are getting a lot out of the pack program.

Much as I hate to say it, I think that you might be biting off more then you can chew.

You might want to talk to someone other then his Mom,to see if he really is able to manage being a Cub Scout at this time. One of his teachers might be a good person.

Eamonn

[Eagledad]

Hi Twocubdad

 

By the way, you can have twoeagledad, I have have to get within seven digits to fit my license plate.

 

Anyway, what you are describing is not an autism issue, but an adult one. A parent one really. I have learned the hard way several times that it is best to get EVERYONES expectations out up front. Everyone involved needs to talk about this and lay out the conditions. My experience is that mom will not change much with her son at this young age. As the son grows, she will get more comfortable with other people working with her son, better, but that will take time. I think we all would be this way. If your adults are scared of her, I would bring that out and explain her choices, one being that she doesn't have to join right now or this pack.

 

I have a real concern in scouting which is adult leader burnout. One problem I have found are the Webelos who don't crossover into scouts in our area come from dens of burned out adults who provide bad programs. When we add stressful situations or people into the program, that makes the burnout problem even worse. So for the health of your scouts, leaders and program, have everyone meet and be honest about the fears and expectations for both the family and your program. In long run, everyone will appreciate it.

 

Good luck, I've been where your at and it pulls at the heart.

 

Barry

[AdvanceOn]

Your council should have a person identified as the Special Needs "expert." Some districts have a special needs committee. TALK TO THEM.

 

Barry is right about this being a parent issue but the more you learn about mixing scouting and special needs the better prepared you'll be. BSA has a number of publications that may be helpful. There are also tons of websites that have resources.

 

This website has some pretty good information but they haven't updated their site in awhile. Still worth looking at. http://www.boyscouts-marin.org/wwswd/index.htm

 

This is also an excellent resource. http://www.nichcy.org/pubs/factshe/fs1.pdf

 

Hope this information helps.

 

 

 

[dsteele]

I agree that this is a parent issue. My wife is a special education teacher and has been for the past 10 years. Only once or twice has she come home complaining about the behavior of a kid.

 

It's the parents I hear about. I think someone (it could be you, but don't do it alone) needs to have a frank discussion with Mom. Just like Barry is suggesting.

 

I suggest the conversation start out with how well you think her son would do in the pack and how the experience would benefit him. Without a but, go on to explain how she needs to relax and trust the leadership of the pack as well as giving her a few ways she can help: i.e, explain the patterns in life that her son expects, the things that calm him when he's upset, etc.

 

Beyond that, I also suggest you look into BSA resources on special needs youth. There may be some material that can help, although I know of nothing related solely to autism.

 

I agree with Eamonn to an extent -- if there is a special needs pack nearby it should be extended as an option. However, Mrs. Steele has been on the inclusion bandwagon for most of her career. I think an autistic young man can learn from other students and the other students can learn from him. There are benefits both ways.

 

DS

[sctmom]

Is she afraid the boy will not be challenged or that it will be too tough for him?

Find out which, then point out that Cub Scouting is not a competition. That it is for her boy to do HIS best. She may find out that he is REALLY good at some things she never knew about. She needs to understand that the pressure that comes from school or sports is not there in scouting but at the same time it will challenge him enough for him to grow and mature.

 

Can you get another parent to team up to be HER buddy? Someone to tell her how great her son is doing and how wonderful she is doing to spend this time with him, etc. Someone that offers to help HER with anything she needs related to scouting.

 

What activities do you feel are not approriate for him?

 

A couple of years ago I had a 5th grade Webelos who had serious learning, emotional and behavioral problems. His foster mother was with him at every meeting, she was a great help. I modified some things we did so he could participate. He did school work on a 1st grade level on a good day. He had speech problems. I don't think my modifications took anything away from the other boys. Most preferred not to doing writing and reading in scouts anyway.

 

[Twocubdad]

As a couple folks have suggested, this is definitely a parent problem, not so much one with the boy.

 

I think the mom's fear, Sctmom, is that the boy won't be allowed to participate. As Its Trail Day mentioned in an e-mail to me (while the server was acting up) parents of special-needs children are taught to be really aggressive to make sure that their children are accorded the help they need and are allowed to participate in various programs. I've tried to be clear with her that we want her son in the pack and will do everything reasonable to accommodate him, but we just need some time to get up to speed. In this case, her aggressiveness is working counter to her ultimate goal. She has everyone rocked back so far that our focus is on how to deal with her, not her son.

 

In the few minutes I spent with the boy he seemed very withdrawn and unengaged. The mom says he tests at a 3-to-4-year-old level. I don't know if that means emotional, physical, mental or some combination of the three. I can envision that he would have problems focusing on a den program, particularly a craft or something where he needs to sit and listen. My expectation is that if there is a problem, they would excuse themselves so as not to disrupt the meeting. But that's the same expectation I would have with all the parents.

 

I hear what you're saying about modifying the program to accommodate this Scout. And we'll do that to the extent we can as long as it neither dimishes the program for the other boys or puts a huge burden on the den leader. In my view, that's where the boy's parents needs to step in and do the extra work needed to accommodate their son. I suppose from a philosophical perspective, I don't really understand how mainstreaming a special needs child works if the mainstream program must be adapted to accommodate them. It seems to me to be a matter of reasonableness. If we had a boy in a wheelchair and needed to move our meetings to an accessible room, certainly we would do that. But it doesn't mean we're going to elimininate all physical activites from the program simply because he can't particiate.

 

By the way, this boy is transferring from another pack in our district just for autistic children. He's been in that pack for a year and has already gone through most of the Tiger program there. (Yes, I've asked if he will be bored going through it again.) Age-wise, I don't know how they did that unless the other pack is a Learning For Life unit and the age requirements don't apply -- I don't really know. The mom says wants him in our pack because she is a member of our CO and we are about 20 minutes closer to their house. I'm sure the whole idea of mainstreaming him is part of it, too.(This message has been edited by Twocubdad)

[sctmom]

Just my opinion -- ALL the adults involved need to take some deep breaths and chill out.

 

So what if he doesn't finish the craft being done? He does HIS best.

I think you have to reassure her that he gets to participate, but just like every other child will need his parent to help.

 

I think someone needs to be assigned to calming the mother down. For lack of a better phrase, she needs to be stroked. Keep telling her that just like all Tiger Parents, she is the key to his scouting experience.

 

She may be afraid that her son will get embarrassed or emotionally hurt. You have got to let her know that is not going to happen.

Let her lead the way on what will be shared with the other parents and kids about the situation.

 

[sctmom]

While browsing some Cub Scout manuals last night I found something your den leaders and the mother should read.

There is a section in the Cub Scout Leader handbook about working with boys with disabilities.

There is also a section in the Cub Scout Leader How-To book about working with boys like this, including a small section on boys with autism.

 

If memory serves me correctly, there is even a special booklet from BSA about Working With Boys With Disabilities.

 

I say share these with the mother so she can have some ownership in this and feel more in control.

 

Please keep us posted as to how this works out.

 

[KoreaScouter]

There is a BSA pamphlet on working with Scouts with disabilities, but it's only a few pages long, tries to touch on all the major categories of disability, and devotes considerable space to the "how-to" of requesting alternative advancement requirements -- it doesn't, nor does it pretend to, turn a volunteer leader into a behavioral psychologist, RN, MD, therapist, etc.

 

I'm getting a lot more interested in this topic than I ever was. In my last troop, the only issues like this we ever had was two lads with athsma who had to carry inhalers -- piece of cake. Now, I've got some with allergies that require medication, a handful of ADD boys, many more with athsma (but I'm familiar with that), and one autistic Scout. Frankly, it's the latter I'm most concerned about. I'm going to contact the family as the pamphlet recommends, learn as much as I can about him and what the family's goals and expectations are for him, and try to determine what practical form his advancement can take.

 

BTW, I'll take any advice I can get. As I'm known to say at work, "All I turn down is my collar...".

 

KS

[SagerScout]

I've not had an autistic child, but I've had a technically "retarded" child in my scout troop for years. (I say technically as her IQ is 72 but you wouldn't know it to meet her at all - she's been mainstreamed her whole life and functions quite well in high school society - helps that she's a knock-out...pray for her and her parents as she's dating now!) I've also heard 4 diagnoses in my own family - OCD, bipolar, schizophrenia, and depression. We're all fine, thanks for asking...half of those diagnoses appear to have been incorrect as life unfolded.

 

Things to try - use whatever works best, discard the rest and try something else:

 

1) Ask the mom to stay for the meetings but give her something to do other than "help" her son -perhaps put her in charge of another child that needs extra attention. Find a kind parent to help the autistic boy. Explain to mom that the plan is designed to help her son gain independence from her, and ask her to talk to the other parent about how best to help him.

 

This way, Mom is there in case there's a major meltdown but she is distracted from causing a ruckus herself.

 

2) In my experience, very shy and withdrawn children often find it difficult and threatening to make eye contact - but sometimes respond nicely to someone that stands next to them, shoulder to shoulder, and talks to them or shows them stuff. So if you have information to impart, stand next to him rather than facing him. Have stuff he can touch and hold and mess with without getting into trouble. Come to think, that's good advice for any Tiger-age kid.

 

3) The kid's a Tiger cub, for heaven's sake. If he doesn't finish the night's craft, it isn't a big deal. If he participates in the meeting at any level (stands for the pledge, puts his wolf ears up with everyone else, tries to work on the craft, whatever) it's a successful day and you should tell hiim so. If ever he makes eye contact, he should only see smiling eyes.

 

4) If he gets into mischief due to his disability, he should be prevented from causing disruption to the meeting (to be fair to the other kids) but not necessarily "punished" as he is likely unable to connect the dots between his behavior and the punishment. Logical consequences are OK - hit a boy with a stick, the stick gets disappeared. Write on the wall and voila! NO more crayon (although redirecting to paper and cleaning the marks off is another viable option) Kick and those naughty shoes go on the mantel until time to leave or go outside. My son's Montessori teacher taught me this one and it really works. She also told my son he had to keep his angry shoes under control or he couldn't wear his beloved cowboy boots. He was SO tall and proud the first day he had permission to wear his boots - he was sure he could control their evil tendency to kick - and they were still on his feet at the end of the day!

 

5) Keep the other kids from teasing him. Teach them how to interact with him and tell them that if he doesn't want to play like they do, it's ok - it's just his choice - it isn't their fault. If you just accept him, they will too.

 

 

[fotoscout]

Seems to me that there will be many witnesses in the den. This boy will be a Tiger, and Tigers require a Parent-Partner. The mom will serve as the boys protector and determine how well the boy is functioning in the program.

 

All you need to do is sit down with the mom and remind her that the group program (den meetings) are for all the boys and can only be tailored just so much to accommodate her son. How the boy accomplishes his individual achievements is a different story. Remember he only needs to do his best! Mom will have a good sense of what his best is.

 

Having this boy start as a Tiger is very much in your best interest because other parents will be at the den meetings. Use it to your advantage!

 

[berkshirescouter]

The cover story of this weeks issue of NEWSWEEK is on this topic. Does a good job.

[KoreaScouter]

So, who out there has had actual experience requesting and getting alternative advancement requirements approved for disabled Scouts? How about alternative MB requirements? I could sure use some advice; this part of the program is a brand-new experience for me...

 

KS

[Eagledad]

Good morning KS

 

I have experience. We had a slightly autistic scout that was deathly afraid of water. Just looking at a glass of water brought fear in his eyes. I went to our District Commissioner and gave him a letter explaining the situation. He came back a week later and told me it was done.

 

Scouting Cheers

 

Barry