Saturday, June 26, 2010

What do the Scouts actually know about Special Needs?

For my blog readers who are getting sick of the scout stuff you can relax, this is the last post (it's only been the topic of the last 3 posts).

This is obviously going to be a subjective post because it depends greatly on your scout group. In this case, I'm talking about the special needs branch of scouting in NSW Australia.

I was recently at a two-day Special Needs Conference and I was quite interested to see their knowledge and attitudes towards special needs and the degree to which they engage with special needs children.

I was expecting to hear a couple of guest speakers and a bit of a potted history of special needs with maybe a couple of examples and some mid-eighties style attitudes.

I was totally blown away.

Apart from a couple of cringeworthy moments, the general quality of the conference was very high.


The Cringeworthy
It's always nice to get the horrid bits out of the way so we can spend time on the good stuff.

A Statement about Non-Disclosure
We were discussing parents who refuse to disclose their child's condition on the A1 (Permissions) form. The leader said; "Look at it this way. If the parent's don't disclose it on the form then we are under no legal obligation to provide appropriate assistance to the child who is struggling".

Obviously what he said was true but it just gave off a bad vibe.

There's a bit that parents and leaders need to take away from this discussion.
  1. Any conversation between parents and leaders regarding conditions that their child have is subject to "patient privilege". That's right. If it's verbal then it's a secret between the leader and the parent. The leader isn't permitted to tell the other leaders without first having consulted the parent.

    The only way that it can be made formal is when it is disclosed via a permissions form.

  2. Scout leaders are not supposed to use special techniques with children or provide special accommodation for children who are not formally disclosed. That doesn't mean that we don't. It simply means that a child with a disclosed condition will receive better support than a child with the same condition but without such disclosure.
A Wood-Badge Presentation on Aspergers and Autism
A leader who was going for his wood-badge (a sort of higher level of leadership) gave a presentation that he'd made on Aspergers and Autism. I'm not quite sure where he had done his research but it was badly wrong in serveral places. He even said that "children with aspergers have no emotions". I talked to the group leader after the presentation and he agreed that it was wrong but since that particular leader wasn't part of the special needs group, it probably didn't matter too much. Interestingly, the special needs leader did later verbally correct many of the incorrect statements without actually telling the presenter that he was wrong.

Ultimately, although his assessment of the condition was incorrect, the tips that the wood badge leader provided for "dealing" with children with the condition were correct. I guess in the end, that's probably the most important thing.


The Good and the Great Stuff
The conference covered a much wider variety of special needs children than I expected. It was refreshing to hear that they cater for, are sensitive to and have experience of;
  • Spectrum Disorders (Including Kanners, Aspergers, PDD-NOS etc)
  • ADHD and variants
  • Non-verbal Learning Disorder
  • Physical Disorders (Missing/Damaged Limbs, Juvenile Arthritis, Brittle Bones etc)
  • Sensory Disorders (Deaf, Bind and even SPD)
  • Cerbal Palsy
  • Allergies and Asthma
  • Children subjected to domestic violence and/or trauma
  • Eating Disorders
  • Dsylexia
  • Hydrocephalus
  • Fragile X
  • Anxiety Issues
As well as giving a potted explanation of most of these conditions, the conference covered topics such as "duty of care", planning activities which involve children with special needs, teaching methods for children with special needs and disability awareness.

The Limitations of Knowledge
The explanations were all given by qualified professionals but it was impressive that the scout special needs leader started the session off with a word of caution that nobody knew everything. The scouts recognize that they can learn from both the medical profession and from those affected by the conditions they describe. They aren't afraid to ask for assistance and they understand that sometimes a doctor's opinion isn't necessarily the same as the patients.

We were told that sometimes medical professionals have ideas which can be offensive to people with the condition and that truly the best thing we can give special needs children is a sense of acceptance and belonging.


Respect
There was an amazing amount of respect from the scouts. I was very impressed. The leader stressed the point that nobody should feel sorry for children who are in this condition. They don't want you to "feel sorry" for them. They want you to accept and to respect them.

He made it very clear that we were never to help without being invited to help. That sometimes people; children especially, need to feel that they can do things on their own. He did however make it clear that we need to enter their world when they can't enter ours. The example given was that when talking to someone who is wheelchair bound, we must crouch down to their level.

It is rude to talk down to them. He asked us, "How long must a person in a wheelchair look at someone's pants fly before they get sick of it?" (to which one wag - not me - answered, "you mean there's an answer to that?").

It's a good point though. In order to have effective communication, we must be in the same world. It's easy to see how we could enter the world of a blind or deaf person but how could a neurotypical scout leader enter the world of a child on the spectrum. I'll have to ponder that one a bit.


Activities
True to scouting ideals, the conference wasn't a talk only show. There were plenty of activities too. Many in fact, that I'll be taking back to my own group where I'll be running a "differently-abled" night.

In one exercise, we were asked to write "Cerebal Palsy" upside down, back-to-front and using our non-favored hand. This was intended to bring home the frustrations of poor muscle control and co-ordination. In another exercise, people were given chocolates and asked to keep one hand behind their back and open them without using their teeth (or their partners).

Another standout session was conducted in absolute silence. We were given tasks to do and had to do them without speaking and without writing. We had sign-language cards and could only use them to communicate. It was interesting to note that some people tried and others gave up too easily. It's clear that there's significant variation between leaders, their capabilities and their tolerances. We also did a mime form of chinese whispers which was hilarious.


Reaching Children
There were a few sessions on reaching children with special needs. We were shown how to convert standard scouting activities, such as knot tying and constructing cooking fires into social stories and matching games which are suitable for children who have difficulty learning. We also met a man who felt that music was the key to the hearts of children and who went about forming special needs bands. His session was certainly not for children with auditory sensitivities but I could see how it would help.

Openness
Throughout the conference the leaders were promoting a pirate themed Agoonorette to be held at Glenrock Scout Centre from 1st - 4th October 2010. I was pretty impressed that they opened it to all scouts and guides with and without special needs.


The Incidence of Special Needs Children and Leaders
One final point. Most of the leaders at the conference had one or more special needs children (either their own or within their group) and many of the leaders had special needs themselves. These leaders did not work at special needs branches. They worked in local mainstream scouting branches.

Scouts has special needs groups around the country but the degree of acceptance within mainstream scouting is so high that unless a child has insurmountable issues, they can usually be integrated into their local group. I think we could all learn a lot from the scouting acceptance.

Friday, June 11, 2010

Why is Scouting Particularly Suitable for Children with Aspergers and other ASDs. (Part 2)

This post follows on from part 1.

In part 1, we looked at the idea of "fallback friends", the opportunities for parental involvement and the balance between variety and structure. In part two, we'll be looking more specifically at the structure of the scouting programme and rewards system and how it meets the needs children with aspergers.

Since my scouting experience tends to be limited to the younger ages, I'll be using a lot of cubs-specific terminology. Rest assured, the other parts of the scouting movement equally cater for special needs.


The Special Interest
Few aspies are so caught up in their special interest that they are unable to focus on anything else but most experience significant improvements in their results if they can somehow bring their special interest into their work. It's common to use the child's interest to drive their other activities at school but how does this work at scouts?

The badge system at scouts is an amazingly wide-ranging set of tasks designed to increase the skill sets and life experience of "youth members" while still encouraging them to seek out new experiences and opportunities.

Since I'm most familiar with cubs and since one of my son's special interests is "star wars" (SW), I'll use these to illustrate my point. The names in brackets are specific cub scouting badges which apply;
  • Reading SW Books (Literature)
  • Acting out Star Wars scenes or playing SW music (Entertainer)
  • Making SW masks and/or puppets (Masks and Sculpture)
  • Automatic interest in space (Space)
  • Sewing SW patterns or otherwise making SW objects (Handcraft)
  • Baking SW themed cookies (Cooking)
  • Drawing, Designing or Painting SW vehicles (Art and Design)
  • Taking stop-motion lego SW photos (Photography)
  • Collecting, labelling and Arranging SW Figures and vehicles (Collector)
  • Playing SW Games, Web Browsing, Computer Painting etc (Information Technology)
That list is nowhere near exhaustive but I'm sure that my point is clear. Scouting provides opportunities to earn rewards by indulging the special interest. Along the way, you may even find that your child develops some new special interests. I recently read a story about a girl who developed "scouting badges" as a special interest and collected all of the badges in record time.


Leadership Skills and Group Work
It's often said that people with aspergers hate group work unless they're in charge. I've never seen anything that contradicts this theory.

Scouting encourages both group and individual work. Sometimes group work is done in randomly assigned teams (games and large crafts) but most of the time it is done in the same small groups and with the same peer leaders. In cubs, these are called "sixer packs" and they usually contain six children two of whom are leaders.

The low numbers and relative constancy of these groups make it easier for aspies to develop relationships with their peers and participate in group-work. Certainly the mix is less "difficult" than school groupwork where teams are usually assigned at random and with no discernable leadership structure.

The chance that an aspie will rise to a position of leadership within the group is good too. In fact, with youth members leaving the groups for various reasons (moving house, moving up to the next level of scouting etc), the chance is significantly greater than 1 in 3.

Such a position not only provides a much needed jolt of self-esteem and peer respect for aspie children, it also tends to inspire them onto bigger and better things. Children in leadership roles need to make decisions on behalf of the group. They learn to trust their peers and to delegate responsibility. Most importantly, they need to learn how to consider the needs, abilities and feelings of everyone in their group. What better practice can there be for an aspie who needs to learn how to interpret and show empathy?


Doing our Best...
One of the most innovative and praiseworthy aspects of scouting is the concept of "doing our best". Unlike traditional after school activities where children are rewarded for athletic prowess, being better than their fellows (man of the match), specific artistic or intellectual talents, stamina or just "winning", scouting recognises the fact that sometimes children have simply done the best that they can.

It's this sort of "everyone gets a prize" mentality which encourages cooperative rather than competitive play. Children with aspergers do not like to lose. They already have enough derogatory labels applied to them by their peers without adding "loser" to the list. They also often don't get the concept of winning. For example; it's not uncommon for an aspie child who has run fourth in a race to have difficulty understanding why there is a ribbon for third but not for fourth place.

You might be thinking that the "do your best" system rewards children for non-participation but that's not the case at all. Scout leaders quickly learn the capabilities of individual children and will expect different levels of work. For example; a child with good writing skills may be expected to provide half a page of written work while a child who struggles with writing may only have to provide a couple of lines - or perhaps even only a verbal answer.


Life Skills
We all hope that our children will grow up to become self-sufficient adults but how often do you hear about the cliché of the thirty-something son who still lives with their parents? Scouting teaches children many of the skills they need to look after themselves in life. There are badges for cooking, sewing, gardening and even operating washing machines and vacuum cleaners. These badges give kids an incentive to learn those day-to-day tasks which they would otherwise be content to let others do for them.

In the higher levels of scouting, life skills change from being simply regular camping outings to survival skills with a strong emphasis on safety and preparedness. There's a pretty good chance that the skills your children learn in scouts will serve them better than most of things they learn at school.


Choosing a Group
Right then, you're convinced... so let's join scouts! Pick a group, any group, they're all the same - right?

Wrong!

There is a massive variation from one scout group to another. Some are denominational, some cater more for specific cultural needs and some cater more for special needs children. Even amongst the bog-standard groups there is intense variation.

Scout leadership is a voluntary pursuit and although all leaders go through the same intensive training, they all have different skill sets, temperments and reasons for being there.

Many scout leaders have special needs children themselves. You'd be surprised at the wealth of knowledge and experience out there. Some leaders lack special needs knowledge and can't (or won't) tolerate special needs children in their group. Unfortunately, this is a sad part of human nature and certainly not something to blame the whole scouting movement for.

If you discover a group like this, it's not worth fighting for your child's right to stay. It's far better to look for another local group where your child will find instant acceptance - believe me, there are plenty. Scouts gives you opportunities to "try before you join". Use these opportunities to find the most appropriate groups in your area - and don't forget that you can always contact your regional office for information on the closest special needs groups.


Full Disclosure
One final note. Scout leaders can only accomodate your child's special needs if they know about them. Too many parents try to "save their children from the label". This backfires when they do something label-specific (like have a meltdown) and the leaders provide an inappropriate reaction. Every time your child goes on a scouting trip, there's a form to be filled out. The forms are more than simply insurance, they help the scout leaders to "be prepared". If they know about your child's specific issues then they can render the most appropriate assistance and avoid dangerous or explosive situations. They can also tailor parts of the programme to your child's specific needs.

After all, it's not just about having a good time, it's about getting our children prepared for the future.

Monday, June 7, 2010

Why is Scouting Particularly Suitable for Children with Aspergers and other ASDs. (Part 1)

I've just come back from a scout leader "training-conference" for special needs scouting and I'm inspired by their acceptance, preparedness and amazing teaching methods.

I'll talk more about the conference itself in a later post but right now I want to talk specifically about why Scouting is such a good choice of activity for children with aspergers and the other higher functioning forms of autism. Most of what I cover here is also applicable to children with ADHD.


Fallback Friends
One of the main reasons for getting your children into after school activities is to help them establish "fallback friendships". This is particularly important for children who are isolated for various reasons or who have poor social skills.

Unfortunately as parents of children with ASDs, we have to accept that there will be times when our child feels that their entire school hates them. This quite often results from a massive social blunder which travels from class to class like a big joke. Your child may even learn to fear smiling faces because they learn that those smiles aren't about friendship but are instead about ridicule.

It's great then to think that our children could have "backup friends" with little or no connection to their school and who usually lack the frame of reference to understand the "tattle-tales" of scouts from the same school.

Even better, if the number of children in the scout group who are from the same school is low and if the leader is made fully aware of the problem he can often prevent it from being discussed in scouts by forewarning the possible source children of the consequences of bullying.

The rules of scouting are very much designed around inclusion and although bullying still does occur, it seems to be much easier to control in a scouting environment. The Australian Joey groups (the youngest level of scouting) have as their motto "HOP" which stands for "Help Other People". We start young and there is no place for bullying in scouts.


Parental involvement
With after-school sports like soccer, football, cricket and baseball, the parental involvement is usually kept to a minimum and we are forced to stay on the sidelines to watch our child make agonising mistake after mistake. Even worse, there's always a "sport-maniac parent" on your side (or on the other side) who recognises your child's inabilites and either makes inappropriate comments or organises his team's attack to concentrate on the weakest point - your child.

In scouting, particularly in the lower levels of Joey and cub scouting, parental involvement isn't just desirable, it's actively sought. You don't have to be a leader, you can be a parent helper - or you can just stay and watch (a lot of parents treat scouts as a babysitting service and don't stay).

If your child has special needs then this is your big chance to watch their interactions with other children from within the group. An opportunity which isn't generally available in the school curriculum. Of course, even though you can easily intervene when watching your child, you generally should avoid the temptation to do so unless your child is under duress or threat. It's better to let most of the mild mistakes happen - and let another leader resolve them. You can talk to your child at home afterwards and help them to improve their interactions without embarrassing them in front of their peers.


Variety and Structure
It may seem a little strange to be talking about the benefits of "variety" when it's clear that our aspie children don't like change but scouting is "variety within structure".

While it varies from group to group, most groups have a nightly timetable and all activities are bounded by an opening and closing ceremony which varies little. The rest of the night tends to be a mix of activities, games and information but it's surprisingly structured with many activities leading directly into others.

Even the games are structured. In the group I'm involved with, we divide our games into fast, medium and slow. We always start with fast games, have medium games in the middle and run slow games at the end. That's right, we actually try to calm our kids down before they go home.

This structure is great for kids with Aspergers as it makes it easy to forewarn them of programme changes. I leave a copy of the night's programme with my phone (for the clock) on a kid-height bench surface - and I refer to it regularly throughout the night.

I'll often show newcomers and children with change acceptance issues how to read the timetable and they quickly learn to answer their own "agenda" questions and become prepared - I still tend to give a bit of warning before ending an activity or game.

It's not all structure though and the variety aspect is equally important. Traditional after-school and weekend activities, such as soccer, football, tennis and golf are very repetitive. They're either team sports where it suddenly (and conveniently) becomes all too easy to blame the least able of our colleagues for our losses on the field - or they're "individual" sports where the players spend a lot more time simply "waiting for their turn" than they do actually "having" their turn. This is particularly painful when a child gets "out" after less than a minute of playing (and a twenty minute wait).

A child can quickly grow to hate a sport which doesn't afford them opportunities. The problem is that if your child has been signed up for a sport, they're often stuck with it for the season. If they're playing soccer - and they hate soccer - they still have to attend every weekend and "play" soccer. Sometimes they have soccer training during the week too. You will notice that children who hate their sport tend to either walk off the field or simply not participate (for example sitting near the goalposts). This only serves to annoy their fellow players and widen the gap between them and the group. If you see this happening to your child, then it's better to remove him from the game than to allow reports of his behaviour to reach his peers at school.

Scouts is different. Some nights we play soccer, sometimes it's craft, sometimes it's intellectual pursuits. There's opportunities for leadership and the badge system allows individuals to grab moments of glory at their own pace. Usually, it's a mix of games, craft and activities. The variety keeps it interesting and prevents less capable children from being ostracised for their lack of prowess while still giving them a taste of a wide variety of activities.


Next Time
Next time I want to look at how the scouting movement accommodates the aspie special interests, how the badge system promotes learning, how scouts provides much needed "life-skills" and the critical importance of those four words; "We'll do our best!"

Wednesday, June 2, 2010

FTF: Post 5 “Togetherness; A Dad’s Perspective on Marriage” by Gavin Bollard

And so we come to June's First things First article which is written by ... me.

Head over to Hartley's Blog to read it.

Unlike the other FTF posts which I've covered on this site, I'm not going to to talk about my own article because I don't really think that there's anything I can add.

I'd just like to say thanks to Hartley and the other FTF authors for allowing me to be part of such an amazing writing team.

Thanks!!