A very delicate subject

[MightyMom]

I'm hoping you can offer some feedback as parents of children with disabilities.... and as someone living with a disability.

My DS8 has been given several opportunities the last two summers to attend summer camp hosted by the Texas Lions Camp.

This camp is specifically for individuals who have an orthopedic impairment. It goes without saying that the Texas Lions do an awesome job of ensuring the highest level of professionalism and training.

With that being said, I still can not send my DS even though he has expressed an interest in going.

Here's my problem.

DS is at an age where I feel he is very vulnerable and naive. Unlike when he was younger and had no interest in venturing off without me to a playdate... he now want to go to friends houses for the day.....or a "drop-off" birthday party. The problem is.... he needs a lot of physical assistance..... especially in the bathroom.

I've had the "talk" with him. Good touches vs. Bad touches. But, how am I supposed to reasonably explain this to him???

How am I supposed to say to him, "Only Mommy, Daddy and your doctors are allowed to touch you there."..... but then try to explain to him that it was okay for Billy's mom to clean him? Or a substitute at school?? Or a worker at church??? Or a camp counselor????

How do I draw the line at a "good touch" or "bad touch" when he has so many people who impede on his privacy???

I want him to be as independent as possible, but for safety reasons it's not practical.

I'm open to suggestions.

 

[Eeyores Butterfly]

MM: I'm sad that you're worried about sending your child to camp for this reason. I'm working on my Master's in special ed, and quite a few of the girls in my program have volunteered at similar camps. These organizatiosn run a tight ship, and your son will be in good hands. It will be good for him to go.

You're right, this is a difficult subject, made more so by your son's impairment. I have worked with teenagers who have similar impairments and have had to do what you are describing. Coming from that side of it, one thing you might be able to say is, "The only time somebody should touch your private parts is if they are helping you go to the bathroom (or whatever else he needs), you have asked for their help, and they are wearing gloves. If you feel uncomfortable, ask them to stop. If they don't, yell loudly and tell a grown up. Nobody should ever touch you for any other reason but to help you, and nobody should ever make you uncomfortable."

While you certainly need to have this talk with your son, you will have to make sure that you do not make him overly cautious. It always makes me nervous when I am in a situation where I have to help a child potty because of the current climate. I'm terrified of a child or another person taking it the wrong way and accusing me of doing something that I did not do. Especially if I am with a teenaged boy (this is why we always have two people in the room with the older children). Unfortunately false accusations happen all the time. Please remind your child that most people will just be trying to help him and are not interested in touching him in a bad way so he does not become fearful of every person who tries to help him.

I hope this helps you. Good luck! If you are still concerned, you may want to talk to the special ed team at his school or his doctor. They have experience with these situations and may be able to give you some more solid advice.

 

[Eeyores Butterfly]

I would also like to add: It's natural to be nervous when your child starts wanting independence, especially if that child has special needs. I would like to recommend the book, "The Man Who Loved Clowns." It is a young adult fictional book about a girl whose parents have died and who is now living with her aunt and uncle. Her uncle Punky lived with her family and was very sheltered by her mother, when they move in with her aunt Queenie and uncle Bert, Queenie wants Punky to go to work in the sheltered workshop. Delrita is terrified that it will be unsafe for Punky, that he will be picked on, etc. It is a very good book for any family member of special needs when it comes to the independence issue.

Independence for kids with special needs is so important. Is there anyway that you could arrange with a friend for a "drop-off" party or sleepover? You could ask the mom in advance if she would be willing to let you show her what she needs to do for your son, and then make sure that you will be allowed to at least call and check on him. Even small steps at this point would be great for the both of you. I hope that you are able to find a solution that works for you.

 

[ireland_nicole]

Part of loving him is letting him go a little, even when it is hard- and I don't say that lightly. It is scary, and of couse you want to protect him, but you can't always be there. Good luck, and blessings...

 

[Eeyores Butterfly]

I just started my grad classes for the summer, and in my transitions class today we touched on teaching children with special needs about sexuality. You might want to consider talking to your child's special ed teacher with advice on how to broach the subject. Theoretically they would have at least some training on how to discuss this subject with children with special needs.

 

[Val]

My DD10 is hearing impaired and wears bilateral hearing aids. We did not discover her hearing loss until kindergarten (looooong story). While she is a straight "A" student (as long as she has the FM unit and hearing aids she needs), she is a little behind in social skills- a little immature and "young" acting and very trusting and naive. I worry about her going off with friends, etc., and being wary enough.

That being said, DD10 will be going to Camp Lions for her 4th year- she started when she was 7. The screening for these camps is extremely well done (think of the liability!), the training is superb, and the staff are the greatest. Was I freaked out her first time- you betcha! I did NOT sleep the whole week she was gone. And she was fine- dirty, a little sunburned, worn out from running around in the woods for 7 days- but so confident and independent. And she made friends she corresponds with the rest of the year. For us, the most important aspect is that she meets friends "just like her" and she learns that they are independent and competent people- not disabled!

Good luck on your decision. It is so very hard. Talk with others and call the camp director. Ask if you could visit one week and send him the next.....and then find a stiff drink and put your feet up the week he is gone (if that is what you decide).

 

[MarieS]

Five years ago my 11 year old son attended overnight camp for the first time. I was very nervous for many reasons-- part being DS is multiply disabled and needs total assistance plus he has some communication issues. This is Camp Riley in southern Indiana and is affiliated with Riley Hospital for Children where my boys go for medical care . What helped me feel better about it was talking to the camp director, finding out camp policies, how staff are hired and trained, etc. I felt my questions and fears were answered in a an honest manner and that reassured me. They invited us to attend newcomer weekend too. Also they have a 3 hour check in procedure to make sure parents, campers and staff are comfortable with care, etc. I was able to talk to the camp counselors and ask questions and get a feel for the people.

This was a big step for both of us and my son loved camp! I won't say I'm not nervous every year he goes, but I don't want my fears to stop him from doing things many typical do. I really feel camp has given him more independence and increased his communication abilities. Plus he likes going because they do "guy" stuff! LOL