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son has JRA and ADHD

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  • son has JRA and ADHD

    My son has ADHD, which I don''t see causing him to need adaptations in the scouting requirements, and Juvenile Rheumatoid Arthritis, which MIGHT cause him some trouble later on. I have JRA, too, so I know where he''s coming from when it comes to pain and limitations when things get too bad. What do I need to do, when do I say something to his leader?

  • #2
    Say something NOW. Not when they''re 4 miles into a 5 mile hike and he realizes he can''t finish due to the JRA. The SM and any ASMs present need to know when there''s a medical condition, for safety''s sake and for practicality.

    There are a few other reasons for this, all benefiting your son.

    If the SM knows about his condition, he can make modifications. It might be as simple as not having him carry the Dutch Oven. Or it might mean making certain his "buddy" is someone strong and mature that your son would feel comfortable telling that he was having a bad day, JRA-wise. His pace might need to be slower (or not), and he may need medication exemptions from some activities. Better to discuss it now rather than have him discussing it when everyone is waiting for him.

    This is also a GREAT opportunity for you to sign up as the Disabilities Awareness Merit Badge Counselor, and for your son to earn his badge giving a presentation to his troop. That will also take the "mystery" out of it for the other kids.

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    • #3
      Definitely do tell them and also share any info you can with them about the nature of your son''s condition, what works, what doesn''t, how well he''s able to manage his symptoms (or know when they are about to kick in), what signs they can keep an eye out for, etc. Most scout leaders have little or no personal experience with these concerns, and while most will also bend over backward to make things work for your son, they may be starting from a pretty minimal level of knowledge. Scout leader training does not typically provide much guidance on these issues (not surprisingly maybe, since the range of potential illnesses and conditions is so large). So it is up to you to help educate them so that they can provide the program to your son in an appropriate manner.

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      • #4
        Yah, mamacat, if yeh want the adults in the unit to do their best job caring for your son, then they need all of the information, eh? It is irresponsible and dangerous to withhold medical information from outdoor leaders. In some units, not being completely honest on a medical form would end your son''s membership if the leadership felt it was deliberate.

        There''s no downside to letting the unit leaders know about your son''s ADHD. They can help by providing information on his behavior outdoors that might lead to medication adjustments, and they can be prepared with appropriate strategies to manage his behavior when it gets too distracted or rambunctious.

        There''s no downside to letting the unit leaders know about your son''s JRA. JRA in particular, as you know, is subject to "flareups" which might very well start on a campout when the physical stresses are higher. They need to be aware of that possibility and prepare for it with at least basic planning. And your son''s needs, if not planned for, can adversely affect the comfort and safety of other kids. Moving more slowly can mean getting caught in a storm, or stuck for an extra day, or being more fatigued and less careful.

        Da job of the unit leaders is to do their best to keep all the kids comfortable and safe. Do your part in helpin'' them do their job. Be up-front and honest in all your communications, especially medical and psychological needs. Fill out a health & medical form completely, write up a summary of your son''s condition, medications, and what sort of things they can expect (and what things they might see if the condition flares up), and have a brief meeting with the SM. Pass along everything you know about how to successfully manage your son''s behavior and arthritis.

        Beavah

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