Extra curricular activities?

bethann3181

DS1 was diagnosed with ED: anxiety.  We're getting him involved in some activities now - gymnastics will begin next week.  Do you tell teachers or coaches of extra curricular activities about your child's DX if it's not immediately obvious to others?  This is outside of school, fun summer activity, so it's not where his IEP is in place, like in the school setting.  Thoughts? 

lite-bright

Typically, yes. We've done swimming, gymnastics, sports skills, art camps, YMCA/rec center camps, music lessons, etc. and rarely have I run into a situation where I felt that the leaders DIDN'T need to be aware that they could encounter some issues with my kid and how to respond. 

Last summer I made a photo book on Shutterfly with a sentence or two on each page, about DD1, her dx, her quirks and a few tips on dealing with them. I sent it in her backpack to each camp and let leaders know it was there. Only a few of them looked at it, AFAIK, but it was still a useful exercise for me and a way to distill stuff that I could communicate verbally, or in the one-paragraph space that they give you on forms to indicate medical or behavioral needs. 

I would much rather that an instructor know that DD1 has a dx, with the tools to address things if they arise, than have to inform them when there is already an issue to address. 

FWIW, I heard from the person running the most welcoming camps that the issues they have aren't with kids whose parents give the heads-up, it's with the kids whose parents just drop them off and don't say anything. There are also potential resources when you self-identify ahead of time -- that camp leader offered to have an extra person available for the week that DD1 would attend, if she would do better with someone to shepherd her through one-on-one. We ended up not needing that, but man, I would've been over the moon if we had. 

marchbaby

I typically end up telling them.  Not always right away, but if he shuts down and shows anxiety I will tell them. They need to know how to handle him if he shuts down.  For instance, recently my son was doing a hockey clinic and totally shut down during the clinic.  The coaches were talking to him, chanting his name, jumping around etc trying to get him off the floor and back on the ice.  In reality, though they were trying really hard, making a big scene and calling attention to my son makes things worse. So I told them about his anxiety  after the fact, and explained that less is more. Make sure he is not injured and walk away. 
In some situations I will tell people before a class even starts, mostly b/c he hates having attention on himself.  If a well meaning coach gets in his face and starts talking to him he will shut down and we stand no chance of succeeding. I like to explain to people a simple, "hi" or "i'm glad you are here" goes much farther then trying to engage him right away.

CaptainSerious

I also tell on a need to know basis.  To give you more of an idea of how this manifests, let me give you a few examples:

 - When J started baseball camp, I told the head coach that he has a speech issue that sometimes makes him hard to understand, but that M is usually pretty good at deciphering what he's trying to say. I didn't tell them anything else.

 - When M was playing football, we didn't tell them anything until we noticed he wasn't understanding some of the more complicated plays/directions given to him.  We told one of the coaches with whom we have a good report that he might sometimes need things explained a few times, in several different ways.  He understood, and always made sure to take a few extra moments explaining things to M.

 - When they are involved in after-school activities, I don't tell the people running the activities anything.  I figure if they have any questions, they will ask me or his teachers.

The one exception to this, I would say, is when you are using an adaptive program or when your child's safety may be at risk.  I am an adaptive ski instructor; we work exclusively with clients who are blind or disabled.  Part of how our program works is that we have a briefing with the client and caregiver, if appropriate, before (and after) each lesson to find out what we need to know about the client's physical/mental condition and other issues that may affect our ability to have a safe and successful lesson.  Based on what we learn, we can not only select appropriate equipment and terrain, but we can create a plan designed to meet each individual client's needs and desires.  With this in mind, I would recommend that you can be at ease and be more candid with information if you are involved with any adaptive programs.  They typically promise confidentiality and strive to achieve a successful, self-confidence building, and fun-filled experience for their clients.

chardonnay24

My son is enrolled in a half day day camp once a week throughout the summer and I did tell the teacher. Mainly because he is an escape artist and I needed to make sure that they were aware of that and kept the door shut and locked, etc. I probably won't tell his music instructor or tumbling instructor because I am present or close and I don't foresee any issues in those classes.