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  • Challenges Overcome

    #1

    The intent of this sub section is for Scouts and Scouters to exchange posts and thoughts about their own disabilities or that of others to put together a resource of strength


    My son was born with epispadias, thats an imcomplete formation of the urinary system. There are many forms, anywhere from not having the lower half of the abdomen closed to tiny imperfections. Well, my son was born without a penis. Male yes, but just an opning and some tissue that looked like a split hot dog. After tests to determine sex, (yes, he is a male) an operation was done to surgically construct a penis when he was 6 months old. The problem was without the necessary muscles in the penis, he could never control his bladder, he just leaked urine all the time which was alright as a baby and toddler, but as he got older, it wasnt as accpetable. He was also diagnosed as dyslexic and ADD. Around ages 7-8 he had his ureters transplanted from his bladder to his colon so he would urinate/defecate stool at the same time. This gave him much better control, but if he laughed or was startled, he would have an "Accident". When we first joined the troop, he would also tent with me, I carried all the necessary supplies as well as a portable toilet that he would use. I had it so if it were to be discovered, it would be mine. Well he caught some heck because he was always with daddy. Eventually at age 13 he had a (this is for boleta)appendicovesicostomy (hope I got this right) The surgeons took his ureters off his colon and put them back on the bladder, augmented it with colon tissue and then took his appendix and connected it to the new bladder and the outside abdomen wall. He now urinates by passing a catheter (10 french Doc) through the stoma into the bladder. He sleeps at night with a catheter in his bladder attached to a drainage bag. He tented with me a few times before he said, " I am who I am" and joined the troop. Showing them the bag. He never had a problem, or none that I heard about.

    He is Add, Dyslexic and has disfluencies, but he was elected SPL as well. HE was patrol leader to the 2001 Naitonal Jamboree, on staff at council JLTC for two years and an Eagle scout with a second bronze palm.

    In the early days, I and he were ready to quit more than a few times, while his peers came to accept him, the older scouts werent to sure. But I am an old Eagle and I wanted him to see all the benefits of the program. We stuck it out, and both are glad we did. We attended a Naitonal Jamboree together, even if he did need two footlockers, one full of supplies, we have been white water rafting in Maine, been to Gettysburg, Antietam and a whole bunch of other places. Do not quit, move around if you have to. You can find accptance, you may have to be his advocate as I am sure you are now.

    In the end, the scouts will mirror the behavior of the adults (that adult association thing, its pretty powerful stuff). You will find a troop that accepts people for who they are, it can be done.
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  • #2
    My son was born deaf. He was diagnosed when he was 1 year old. He attended a school for the deaf until junior high when he was mainstreamed.

    My wife & I decided to get him involved in Cub Scouts when he was Wolf age. He loved it! He is a very visual learner & thrived in the Cub Scout setting. He crossed over to Boy Scouts & loved it even more. He was elected to the OA in 1993 and completed his Brotherhood in 1995. He was elected PL twice and SPL 3 times! He earned his Eagle in 1998 & I was told by a member of his Eagle BOR "this is a fine young man". And when he was diagnosed as being deaf our audiologist told us "he will never go to normal school, never be able to talk, never etc." He graduated with honors from Mt. Lebanon High School and went on to attend RIT. He graduated from there WITH honors this past May!



    Ed Mori
    Troop 1
    1 Peter 4:10

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    • #3
      OGE, good idea adding this subsection

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      • #4
        Inspirational stories, both. I congratulate both of your sons for trailing the Eagle to success through such challenges.

        ps My son and I will be Medical at one of the Sub-camps at the 2005 National Jamboree. Maybe we'll see you there.

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        • #5
          "I am who I am." Son of Old Grey Eagle

          I assist people with disabilities in finding the right work or training for that work. Self acceptance is the first step in the fulfillment of that objective.

          FB

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          • #6
            I am a Bear leader (3rd year). I was until this year pack trainer. (to much gray area for me). I have a boy in my den w/ a brother who is totally disabled. His mom approached me about family camping. She can only come if she can bring their r.v. to keep the 4 year old in. Our cubmaster says we don't need all the tour permits etc. 'cause it's family camping and parents are there and that covers everything. Yet, they have a problem w/ this parent coming w/ r.v. to bring youngest child who is 100% disabled. this child is wheelchair bound. Can not hold his head up, feed himself and is extremely sensitive to heat and cold. The scout would camp outside. My ex husband is the assistant cubmaster. He is 85% disabled from 4 strokes. He brought an r.v. last year and now some people are having a problem w/ that and he will no longer camp w/ the pack. I am becoming frustrated and looking for guidance and help. This child could become a future scout in 3-4 years and should we do wrong choices now, it may come back to bite some of those people later, especially legally.
            thanks

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            • #7
              Thank you, Old Grey Eagle and Evmori, for sharing your personal stories. You are both very proud of your sons and rightly so. Making Eagle is not easy for a track star, much less a kid with a disability.

              I have learned that one of the Webelos who will be crossing over to join our troop next February has Downs. Where can I go to learn how to integrate this fellow into the troop? I know there mu

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              • #8
                Trevorum
                Check out BSA Publication #33065 "Scouting For Youth with Learning Disabilities" and "A Scoutmaster's Guide to Working with Souts with Disabilities." That's BSA publication 33056.

                These should get you a start.

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                • #9
                  These are great stories of even greater children. I have a 12 year old son that has been diagnosed with Tourettes syndrome, Obsessive compulsive disorder and bipolar disorder. Add to that he has Migrane headaches and is like me in passing Kidney Stones. He is very active in the troop. He is on track to get first class soon and is among the top performers in the troop. We make some accomodations but only as necessary. There are no rules about being easier or less stringent on him. He is doing welll and is very proud of his accomplishments. Scouting is a big part of his success in everyday life. I am proud of him and hope and pray he continues to get his eagle. His younger brother (9) looks up to him. Children with disabiilities can be among the best leaders in the world. Don't ever give up on them. Thanks for reading this.

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                  • #10
                    Hello all:

                    I apologize for the slightly off-topic posting. I operate a scouting uniform bank. I was looking through the box of uniforms this weekend, and ran across a custom-made shirt. This is official BSA issue, from one of the contract tailors they use. The shirt is an adult small, short sleeve with velcro up both of the sides and along the arms. I imagine it was tailored for a person who has limited dexterity to close buttons.

                    If anyone has a Scout that would benefit from this uniform, please contact me and I'll get it out to them. I do ask for a small donation to cover my costs and postage. If this is a hardship, I can work with the family.

                    Thank you.

                    Keep on Scoutin'
                    Ora

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                    • #11
                      Ora, I will keep your shirt in mind if I hear of a need. Great idea, too!

                      My son (13.5) is in the Autism Spectrum having Pervasive Developmental Delay-Not Otherwise Specified (PPD-NOS). This is all secondary to his birth defect, Omphalocele, in which his organs were on the outside of his body. Following multiple surgeries and hospital stays, his medical problems were resolved by age five.

                      Although my son was accepted by my older son's troop, my dh and I decided to start a special needs troop. It is for boys who cannot cognitively make it in a regular troop. Our troop doesn't seek to isolate them, but to allow them to learn at their level. These boys are working on their Tenderfoot rank and recently enjoyed their first campout together. They've carried out two flag ceremonies for our small town and did great!

                      We are incorporating a now absolete boy scout program that was written for the mentally retarded. They will earn 10 patches that are sewn on their shirt around their Scout or Tenderfoot badge.

                      We're excited!

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