Sunday, May 15, 2011

Our Autism Spectrum Disclosure Story in Scouting - Part 2

I hope all are having a nice weekend so far and welcome to all who are reading this blog. 

Thank you so much for all of the wonderful comments to the first part in this three part trilogy on the subject of disclosure of your scout’s Autism or special needs.
This is going to be part two tonight. 

Part 1 – AutismDiagnosis Disclosure: When, Where and How - Part 1

Part 2 – Our Autism Spectrum Disclosure Story in Scouting
Part 3 – Additional disclosure issues once your son/daughter is a Scout. The choices go on.

I will warn you that in the process of getting ready for this blog my thoughts have gone off on many tangents. I will do my best to limit tangents in my blog here but tonight if I make a couple of swerves off the main path, I will get back on track so hang on and let me know what you think.

Most I am sure would start this story with when their child had his or her diagnosis and then go from there but nothing about our family is so straightforward. Our story starts about a month and half before with the diagnosis of our youngest son in June of 2008.

When we left the doctor’s office with the news, included were a few brochures, a phone number to call for services (and nothing else) and a follow-up appointment several weeks later to talk about the diagnosis we were just given. Our youngest was progressing well and hitting all his milestones until around 18 months when a regression started to happen (this may sound familiar to some out there) and by his second birthday in May of 2008, he had lost almost all of his words (or perhaps didn’t lose them but became non-verbal), spun in circles for regulation, waved hello backwards and had not yet started outwardly showing imaginative play to the extent doctors thought he should have given his age. We knew something was wrong and after a four plus hour exam with a panel of professionals we were left with the diagnosis of Autism / Autism Spectrum Disorder.

I have to say I was just thinking it was some type of developmental delay and I was pretty shell shocked to say the least but Karen was not. She had done research online and was expecting it. That still didn’t make the diagnosis easy to hear.

Like many parents after receiving the news and not much other support from the medical community, we went home in a state of “what do we do now” and “what does this mean for our child” and tried to learn as much as we could. The days passed by hour after hour consuming as much information as we could and we started to realize that there were many schools of thought as to how to treat children with autism because autism is so different from child to child.

With each passing hour and each article we’re read, things that our oldest son was doing and his behaviors were starting to click that he also had an Autism Spectrum Disorder in the form of Asperger’s. One might ask how we didn’t notice this before?  Well, in retrospect, we do recognize now and understand a few early Asperger’s traits, however our oldest son had met his early milestones, showed giftedness academically and although he seemed a bit behind socially and with physical and gross motor skills, we attributed this at the time partially to him being an only child, partially to his personality seeming a bit like his mom’s (who we now know has Asperger’s too) and a lot to the fact that we lived in an area at the time where there wasn’t much opportunity for him to get outside, play and have socialization with peers.

Of course once Ryan was diagnosed and even a few months before that, certain behaviors started to ring bells in our head.  We had moved from CA to WA at the start of his third grade and learned at that time, that is was common for children with Asperger’s to start exhibiting more traits around that age.  We had a couple discussions with his 3rd grade teacher about behaviors but at the time were hesitant to put a label on it and weren’t sure if we did, what that label would be?  In addition to showing behavior consistent with Asperger’s, he was showing behaviors symptomatic of ADHD and Sensory Processing Disorder as well. A few days later after our youngest son’s diagnosis, we contacted our oldest son’s pediatrician and we were able to get him set up with an appointment for an evaluation for late July of 2008. His first overnight Cub Scout camp was the second week of July, just a week before his appointment.

By this time the Cub Scout Pack in our area that he was with was winding down for summer break (with the exception of summer camp). We were still trying to get our heads around the process of getting services for our youngest but we wanted to make sure our oldest son was well taken care of as well and we wanted to make sure that for his upcoming overnight summer camp that he, we and the leaders were prepared. 

The three weeks between the end of that school year and the start of camp, both Karen and I felt that with all of the research that we did we had a really good grasp on technical terms and issues but emotionally it was still a tough time. We were going through a grief cycle and it was one of many that I’m sure we’ll experience over the boys’ lifetime.

For summer camp, our son was to attend a four day, three night resident camp called Gilbert Ranch just south of Portland and two of the three Bear Dens (mine and one other) were going to be going traveling together and doing stations together. Camp started about a week and half before my oldest’s appointment so we were kind of caught in what to do in terms of preparing paperwork for camp. After talking it over, we made the choice include on his medical forms a  “pending diagnosis of aspergers” or something to that effect.

We were so new to the all of this but we felt that to be the best advocate for our scout, it would be the most responsible thing to do. Once we got to camp and all checked in, there were two guides that were assigned to take our scouts from station to station each day. I was debating on what if anything I should say since we did not officially have a diagnosis yet in my heart I knew it was coming.

I will be honest, I struggled with the who, what and when because I was still trying to process everything and how our world had changed. That first day in camp, when disclosure was put squarely in front of me, I struggled with the privacy vs. disclosure issue. At this point, we had not even discussed it in any detail with our son because we did want to wait to talk to the doctors first but I was in the real world with a real choice.

That first day, we had many points when the boys and guides were waiting and at one point I made the choice. When the two guides were sitting alone, I went up to them and asked for a moment of their time. I explained that my youngest son had just received a diagnosis of autism about six weeks prior and that we strongly suspected our oldest had Asperger’s and that we had an appointment for him the following week to get an official diagnosis. I briefly told them about some of his triggers (we had much of the lingo down early) and things that set him off. They told me that it helped a great deal to have that information. As it turns out, the main guide had worked with kids with Asperger’s before and the other one said he had Asperger’s himself. Talk about a great relief being lifted off of my shoulders and perhaps some divine intervention as well. Two days later when a large situation happened, the main guide stepped in and had better luck than me in resolving the issue. Taking me out of the equation and having that support so early was a godsend.

There was one other den leader along during that trip and I made the choice not to tell her at the time (I did tell her a year later for other reasons) and it was a very good choice. She was a good leader and did a really great job with her Cubs but for the sake of my son’s privacy it was the right choice. She was witness to the situation that happened at camp and I had heard her make a pretty rude and insensitive comment which made me feel my choice was the correct one. 

For the most part, camp was great and he had a great time.
 The week after we got back, we did get the diagnosis.

That summer we had a great deal to talk about and we had even discussed pulling our oldest out of Scouts because we were faced with lots of therapy for both boys and trying to figure out how to provide the best possible care while running our business. We had a great deal to talk about and figure out. One of the things that we weighed was that fact that our oldest had made his first real friend through being in Cub Scouts and that weighed a great deal in our choice to have our oldest continue in scouting with me as the Den Leader.  We knew that if our son continued in scouts, I would remain his Den Leader. To see how much growth has happened with our oldest due to scouts, I am so happy that we made the correct choice.

So after we made the choice that the two of us were to continue, the questions came back. Who do I tell about his diagnosis, when and what do I share? One of the things we have always told our sons is that Autism and/or Asperger’s is part of you (like your eye color, height, hair color) but it should never define who you are.

At the planning meeting for the upcoming year, I had a chance to be alone with the current Cubmaster (who is now an Assistant Scoutmaster in our Troop) and the incoming Cubmaster for a talk about both of our boys. I explained that our family didn’t know what the future would hold but that we would take it one day at a time and continue in scouting. For our son’s privacy, those were the only people that we told in scouting at that time.

A year and later when we were planning for the next summer camp, our youngest was making progress in signing and starting to reverbalize some of his speech but taking care of him was getting to be much more difficult as he had impulses to bolt and other issues as well and it was unclear if I would be able to go the full week to camp. In a private meeting with the other two Den Leaders and the Cubmaster,  I told the other two Den Leaders about both kids.  Again, it was the right choice at the right time.  We ended up traveling that summer to the Autism Society of America National Convention in St. Charles, IL along with a visit to family in different areas of the country and ended up missing summer camp. 

For my oldest, the next choice of disclosure came when he moved from Cub Scouts to Boy Scouts.  We did a few things.  When we had a meeting with the troops, at some point in each case they asked the leaders and parents to a private meeting. In private with either the Committee Chair or Scoutmaster, I asked if they (the troop leadership) had worked with scouts on the Autism Spectrum and with Asperger’s. I did explain in private that my son was on the spectrum and got the e-mail addresses of the leadership (just like I would for one of his teachers at school). 

Once my son made the choice of troops, I was in contact with them. The troop that we went to wanted me to become an Assistant Scoutmaster right away but I told them I needed a break but I would be at the meetings and when I could, I would be at the campouts.  

At the very first meeting, I gave an introduction letter to the Committee Chair and the Scoutmaster. What is an introduction letter do you ask? It was a one sheet piece of paper with our sons name on it, a color photo (so they would know who he is) and a general explanation of what Aspergers is. It listed his triggers, sensory issues as well as his strengths.  It was short and to the point and easy for them to visually scan. At the end it also gave some website resources for them to visit if they wanted to learn more. 

During that first meeting, the Scoutmaster and I pulled the Senior Patrol Leader (youth leader of the troop) and we told him as well. 

After the boys were broken out into new boy patrols, two more people were told. The adult Assistant Scoutmaster who was assigned to the patrol as the adult guide and the scout that was assigned as the patrol’s Patrol Guide were also told of our son’s Asperger’s.  Both were going to be in direct contact with my son and helping his first year on this trail to first class. 

Over the past year, most of the Assistant Scoutmasters now know about the Asperger’s since they work with him. He gets along with all of them and is treated like any other scout and is given the same expectations as anybody else. The Scoutmasters don’t let the Asperger’s define him or limit him. Only a very select few of his peer scouts have been told since we wanted his privacy to be respected and for people to not be clouded with labels. 

Last year when he went to his first weeklong camp at Camp Meriwether with his medical form, we included the same style of introduction letter for the medical staff to have in case any issues came up while I was away or unavailable. 
 Just a bunch of Scouts having fun

This is always an ongoing process with him and as his parents and advocates, we will always need to weigh what is the best for his safety. 

Our youngest now three years later has regained his speech, has out of this world math skills but safety and sensory issues still abound. He will be entering Kindergarten this coming fall with an aide in a mainstream classroom and also be part of a program called SCIP (Social Communication Integration Program) that will assist with other special needs. He is excited to start scouts like his big brother but he will have to wait until he starts first grade as a Tiger (Joey’s in Australia and Beavers in Canada). The US has a pilot program for Kindergarteners called Lions but it is still in beta testing in two US cities (not in ours) so our youngest will have to wait one more year. 

Our youngest has challenges which are directly related to safety such as bolting and wandering so for him, it would be more prudent to provide information about his Autism to all of the adult leaders (in private) which would give more supervision potential.  We will provide an introduction letter to the CubMaster just like we did for his brother. 

Karen and I agree that I will again step into the Cub Scout leader position as his Den Leader and as such it might be important that the other parents know of our son’s condition as well. Providing a controlled environment with correct information as well as dispelling myths and misconceptions around autism can be a powerful learning tool for all and helps promote acceptance and inclusiveness.   

We still have some time to work these issues out and this may change but it would be one way to help ensure his safety. I am sure that many conversations will take place over this subject because his privacy is important as well. 

If there is anything that you would like to know more about, please let me know. The last part of trilogy will pull together all of the information talked about and what to do with the information going forward in regards to disclosure in scouting. 

Support Your Scouts 
Crossover 2010

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