Saturday, September 10, 2011

Dealing with Sensory Processing Issues at Summer Camp

It has been awhile since I have had a chance to blog for Autism and Scouting. I wanted to share some really exciting news to all of the readers of this blog. Over the summer, my wife Karen and I founded a non-profit corporation called Autism Empowerment.   We are currently in the start-up stages and are in the process of developing many different programs that will assist to Accept, Enrich, Inspire and Empower those on the Autism Spectrum and the those who support them. 

One of programs in development is an Autism and Scouting program which we will be sharing much more about in the coming months.  There will also be a variety of other exciting non scouting related programs that we think will have a local, regional, national and worldwide reach to assist those living and assisting those with ASDs on a daily basis.
Baden Powell , the founder of the Scouting movement is quoted as saying A week of camp life is worth six months of theoretical teaching in the meeting room.  B. P. was a great believer in having scouts attend a week-long camp in order for the scouts to put what they have learned in their meetings and at home into practice. 

For most scouts at one time or another, sensory & personal issues can play a factor in the scouting experience (i.e. home sickness, fear of KYBO, swimming tests as well as a whole host of other things) . For most, these challenges will fade over time.  For many scouts on the Autism Spectrum, sensory issues can be a life long struggle. This has the position to set the stage for either a negative or positive experience when a child on the spectrum is placed into a week-long camping setting.  

Smells, sounds, insects, sleeping issues, changes in schedule, changing clothes,  using the KYBO, dirt, temperature outside and food issues can make camp life a time of extreme stress and has the potential to send a scout into a meltdown or shutdown mode depending on the scout handles stress.

I wanted to share some sensory issues that came up for my oldest son (11 ½ at the time a First Class Scout and now a Star Scout) who is on the autism spectrum with Asperger’s while we were away at Camp Parsons.  This is a Boy Scout Camp on the Puget Sound that we attended during the summer. The camp was six nights and I was there the first two nights and the last two nights.  Due to obligations at home, I needed to leave camp on Tuesday after breakfast and then I returned after lunch on Thursday.  We had a similar schedule the prior year when he attended Camp Meriwether on the Oregon coast and it worked very well.

I wanted to share just some of the challenges that were personally faced and how we overcame them in our family. There are many other challenges that could have happened and fortunately only a few issues did come up.  It was how the situation was worked out that made a difference.

It does not matter if you are in Cub Scouts, Boy Scouts, Girl Scouts or some other scouting group,  “Being Prepared” is always a good habit to have to help avoid or minimize sensory issues.
About four weeks before camp our Troop had a meeting about summer camp and gave out a packet with general information to parents including a map, rules, merit badges offered and other helpful information.  It is good that the troop provided the information but by this point, I had already gone to the council website and downloaded and printed off the full leader guide.  In our house, I like to be REALLY prepared if I can! (It helps balance out the other three family members who appreciate guidance in this area.)

My oldest son already knew the merit badges he wanted to take, had an idea on where the campsite was and where we were going to be staying. Because he is very visual, he went to the website for Camp Parsons and saw pictures of what it looked like.  We were preparing him well in advance for the trip and it was something that made for a smooth transition.  Our oldest is really good when it comes to transitions but it is always good to be prepared.  You can’t avoid all surprises or obstacles but to minimize them ahead of time by being proactive significantly increases your chance of a more positive experience for both you and your scout.

I highly suggest getting as much information about the camp in advance as is possible, reviewing it to know possible issues in advance and then sharing the information with your scout and trying to develop a plan in advance to tackle issues that may be of challenge.  Social stories can be of great assistance in this area for many scouts. If you can get photos of the camp from a website or from a council office, this will give the scout some idea on what they will be seeing.  Google Maps is a great place to see a map on the computer, all you will need is the address of the camp. Get a map of the camp and share it with your scout.  He or she may or may not be the best map reader but it will give them some perspective and what the camp has to offer.  This suggestion can be used for most camps within the Boy Scouts of America. I would think that this information could also be obtained for Girl Scouts, other scouting units within other countries or other scouting organizations.

In our case, the first real challenge came to camp within the first few hours.  The boys had all changed into their swimming suits (something in itself that can be an issue) and headed down to the health check and swimming test area.  The boys paired up to take the swim test and my son and another scout paired up and went down to the dock. The buddy that my son was to take the test with got nervous and backed out.  This left my son in a vacuum and he looked like a deer in the headlights. He was already nervous about doing this swim test in the cold ocean saltwater and then with his partner refusing to go, anxiety increased. It was hard to communicate with him because of the distance involved between me and my son (I also had a very sore hoarse voice) and from what I could see, he just froze on the spot and didn’t know what to do. He had visualized taking the test but had not prepared for this.  Other leadership was not paying attention and had I not been there, this could have been a real setback for him since the swimming test is one of the first things boys do when they get to camp and they have to pass it in order to be able to participate in other water-related activities.  Fortunately, I finally was able to get the attention of the leadership assisting with the swim test and we found another scout who needed to retest and was willing to go out a second time. 
The swim test was successful and afterwards he told me how nervous he was and how proud he was of himself. This could have been a situation in which the first thing at camp would have been a disaster and a negative experience that could have set the tone for the whole camp. Instead it was a huge success which was a building block for more success and gave him the opportunity to bond with other scouts during water activities throughout the week. 
This was a situation where having an advocate that is aware of what is going on is critical during camp. I totally understand that a million things are going on and leaders are being pulled into so many directions but having somebody aware of what is going on with these kiddos physically, mentally and emotionally is a key tool for their success at camp. I am sure the other scoutmasters were assuming that I was watching out for him (which I was) but due to my communication issues (hoarse voice) and the distance I had to be from the pier to the dock during the test, there needed to be some back up. Things did work out and the success was realized. Having back-up leadership that knows your scout is important, especially if you are not able to accompany him at camp.

The next two situations came the next day.  Another scout was running late and I had to stay back with him to make sure that he got to the shooting range for the first of two troop times. Troop time is when the troop goes as a troop to do an event.  Well aware of the guide to safe scouting and never wanting to be left alone with a single scout, I had my son stay back so they could be buddies. The troop left and we told them we would catch up (it turned out two others scouts were also still in camp), so when everybody was ready we all went and caught up to the rest of the troop at the shooting range.  
The issue was that the safety talk was already given to the rest of the troop.  We were told not to worry because the leader there would go over the rules again. I asked my son if he wanted to shoot and he said no. (Before we got there, he had said yes.)  I asked why and he said because they had already gone over the rules and he did not want to.  He was likely embarrassed that the group was late and didn’t want perceived attention to be called to him. I let him know that it wasn’t a big deal that they were going over the rules again and since the whole rest of the troop is shooting, he should just try it. He again said no.

I stepped back and as the time came when all of the rest of the first group had shot, the leader went over the rules.  I then asked him again if he wanted to shoot and he said yes.  Often times it is very wise to step back and let a scout with autism or Asperger’s have time to process the information that is given them.  In my experience, trying to force someone into participation will cause kids to back away, however if given some space to be quiet, reflect and process, they will often decide on their own to participate.  As it turns out, my son went into the range and did a great job.  He told me afterwards that he had a lot of fun and was glad he took part. Processing time is so important and not putting too much pressure on a child is often the best option.

The second issue that occurred was during the second portion of the troop time for this day.  I found out that the troop was going to a field and was going to do field type games.  I had a feeling that there might be an issue with my son in taking part.

I was really tired at this point because of the lack of sleep I had from sharing a small cabin with three other scoutmasters and I knew that it might be a benefit to remove myself from this pending situation.  My son has issues with wanting to take part in troop games; he sees no point in them and thinks they are pointless. To him they make no logical sense and are therefore not fun.

Participating in group activities is a common challenge for many with ASDs, especially those with Aspergers.  Social interaction and reading social cues can be a real struggle. Because having practice helps him improve his skills, I encourage him to take part in the games. The games are meant to build unity, promote team building and encourage social interaction.  These activities may go against the grain and challenge the comfort zone of many with autism, however having the opportunity to participate in these activities in an inclusive environment is one huge reason is why scouting can be such an asset to those on the Autism Spectrum.  
As I mentioned, I stepped back and did not attend the games on the field.  From what I was told, the troop went out to the field for a game that was a hybrid of Capture the Flag. Well as expected, my son did not want to take part in the game. One of the other scoutmasters (who did his scoutmaster conference for Star during camp two days later) sat down with him and asked him to take part. From what I understand, my son was a bit curt and told him “no”.  They talked for a bit and he was given a choice and some time to process the two choices. After a short time he got up and joined the games.  This scoutmaster knows of his Aspergers and did not take offense (figured it was part of his defense mechanism).  In fact, my son ended up really enjoying the game and was the talk among his team about how he was the closest to score out of anybody else. 

I knew myself going in what might happen and how I might react and thus I took myself purposely out of the equation.  Although being both a leader and a parent is beneficial in aiding my son’s success, there are times when your child will learn better or is less likely to meltdown with another leader. Sometimes it is the best to remove yourself from the situation and let other knowing leaders take the lead. This helps protect your relationship with your scout, gives other leaders a chance to work on their skills with those on the spectrum and allows for adult association for your scout with other leaders.  There are definitely times that you need to be there for your scout as their advocate but you also need to let them grow as well.

So… onto something less pleasant!  One of the issues that we face in the great outdoors when one is at a week long camp is the issue of hygiene and the taking of showers.  Camp Parsons is pretty unique in the camping world in that they have porcelain KYBO’s (bathrooms/outhouses) and each campsite has a separate shower facility for adults and youth.  The adults had a private one room combo room which was able to be locked from the inside and the youth had a multi- shower room. 

The issue that came up very early on in camp was my son’s issue surrounding changing clothes and being undressed especially with other people around. I talked to the scoutmaster in charge and let him know about the issues he was having and we were able to come up with an accommodation in which he could use the adult side as long as he was quick. He still had to use the general youth side for general bathroom use but for changing clothes and taking showers, he could use the adult side as long as he was quick.  This accommodation was given to him the first day and I thought I had communicated it effectively to my scout.
I leave on Tuesday fine and I get back on Thursday afternoon during troop time but I find him in camp with a few other scouts and another scoutmaster.  He was refusing to take a shower and thus would not be able to take part in any other troop time until he did so.  He did not want to use the general shower area. He had forgotten that we had gotten an accommodation for him in the adult area. Unfortunately, none of the other scoutmasters knew about the accommodation that was put in place.  (The scoutmaster in charge that did know was not in camp at the time).   After a lengthy talk with my scout, he finally took his shower in the private adult shower and all was set right in the world.

I learned a great deal from this and have taken a great deal from this. 

1)      If you set up an accommodation, make sure that all appropriate parties know about it.  I talked to my son before I left and I was under the impression that he understood that he could use the particular private adult area for certain things.  It doesn’t matter if it is during scouting or at school or home, if the person who has the accommodation doesn’t know the accommodation (or fully understand it) then he or she will not be able to fully utilize it when it is needed.  Make sure that any accommodation is understood by the one that is using it. 
For example, my five year old younger son on the spectrum knows that if he has “wild body” then he has a weighted vest to help regulate himself.

2)       Even though I had set up my son’s showering and changing accommodation with the person in charge, the person in charge will need to delegate to other scoutmasters and they should be aware of the accommodation as well.  Like in a classroom situation in school, if the teacher does know about an accommodation that was worked out with others on the IEP team then they can’t use it to help resolve a problem. Letting the leadership know of an accommodation is key to making sure that communication is free-flowing.

3)       Sensory issues at summer camp can’t be avoided. Work with the scout’s family and create an action plan in advance to make sure that summer camp can provide wonderful memories.

There was one more issue I would like to talk about that was something of a major issue that arose at summer camp.  In fact, this was an issue that came up last year at Camp Meriwether and three years ago as a Cub Scout at Butte Creek.  That issue is FOOD!!

Ok, how many of you out there have issues with your Scouts surrounding Food? I would dare to guess that the vast majority of you have this challenge with your scout.  During weekend camping trips, short term and long term hikes and a week long summer camp, the food situation will come up for most.  The mess hall doesn’t serve Chicken McNuggets, pizza from that one or two particular pizzerias and they don’t generally have meals made up of crunchy, bland or orange food.  If these are the main staples of your son or daughter’s diet, food taste, texture and smell will almost certainly come up as an issue.

The first morning after we were at camp, the lead scoutmaster looked over at me and pointed down at my scout and asked if he was going to eat anything. I flashed the ok sign and said he would be ok. At dinner the same thing happened. Afterwards, I told the scoutmaster that I really did not expect him to eat much while he was at camp but he did have a supply of granola bars, rice cakes and other things in his backpack that he would eat and when I came back on Thursday, I would bring a resupply. He was fine and said that he would watch out for him while I was gone. I did get a report back that he did not eat much of anything while I was away (not a shocker).
After I got back, the meals were the same. He would sit nicely at the table with a clean plate as the food was passed. It seemed as the week went by more and more people wanted to sit at his table because the realized there would be extra food. None of the other scouts really cared one way or the other whether he ate; they were just happy to get extra food.  I did notice the one thing that he would eat was the after dinner ice cream or popsicles and those were not shared with anybody else. Also, when I came back, I did bring a resupply of his food with a few extra treats for his tent mates. Needless to say, they were happy as well.

What is the first thing a scout learns when they join Boy Scouts? Be Prepared!  For those of you with scouts with food issues, do that. Be Prepared. Plan ahead and cope and adapt.

Going into camp, I knew what he would and what he would not eat so I tried my best to plan ahead.  I also knew that he was going to use the camp store as a supplement and I knew he was going to be ok.  I planned it out and as I expected it all worked out. 

Yes, I encouraged him to eat what was given when I was at his table and yes the other scoutmasters encouraged him to eat what was at the table but in the end he made the choices for himself.  In many cases it is hard for a scout on the spectrum to ask for assistance and for older scouts, this may include a not wanting to be embarrassed in front of his peers factor.  

In many cases if your scout has food allergies or sensitivities, an alternate menu can be planned with the mess hall in advance if it’s a weeklong camp, however if you’re doing an overnight or a hike, the options may be more limited and you may need to provide your own food. Learning how to navigate how to make the best choices can be tough and can be especially tough when you have limited options. Our son knew he needed to stay extra hydrated throughout out the week (he had a water backpack to use all week) and he knew he had both his supply of food and the Trading Post.

So, these are a few things I wanted to share regarding sensory and social challenges that came up over this past summer. 

I hope this was helpful for some of you.  Remember, that you can always do your best to be prepared but you also need to work on teaching your scout to Expect the Unexpected because no matter how well you prepare in advance, there will always be situations you didn’t anticipate.

Please feel free to leave a note in the comments section and let me know what issues that you had with your scouts this summer or in the past at summer camp.

Remember, we are here at Autism and Scouting to explore how we can help all our scouts be the best that they can be.

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