Sensitive subject warning…If talk of sexuality and teenagers bothers you, stop reading now. However, if you are the parent of a boy with spina bifida, or are an adult male with spina bifida, please keep reading and offer some suggestions.
Where I could, I always approached the subject of sexuality with my children in a very open and honest fashion. I started early, used an age-appropriate technique, and tried very hard to make sure my children learned what they needed to know from me and not from less reliable sources. But when it comes to Ronnie, that has been difficult.
I don’t know what, if anything, he was taught before he joined my family. He was 14 years old when he joined us, so someone should have really approached the subject previously. But I don’t know if that happened or not. I have no problem starting from the beginning with him on the subject, but honestly, I’m not sure how to proceed given his spina bifida.
Ronnie is in a wheelchair. He uses catheters to empty his bladder and a cecostomy for bowel control. So what does that mean in the world of sexual function? Will he be able to maintain an erection? Will he ejaculate? Will he be able to father children?
I need someone who can help answer those questions and who can help me make Ronnie understand the answers. Would that person be his urologist? I can’t think of anyone else to ask, so this is where I really need your help. Please feel free to email me privately (email is on the right of the page) if you are uncomfortable leaving a comment.
Ronnie is a very caring, very loving person, and a boy who definitely is very interested in girls. He needs some answers, and eventually the life partner he chooses will need to understand the answers also.
And I need to start now to help him find those answers…
I think the urologist would probably know the most about his sexual function, btw. does he see a peds urologist? If so, who? Just wondering.
ReplyDeleteI totally have matched Peyton up with another little boy who has to cath (atleast temporarily, and maybe forever, like P) who also had the same surgery she had.
It makes me feel good knowing someone is out there who WOULD understand her on an intimate level, I know she's only 2, but I do want her to have some aspect of a normal life in regards to those things, as I'm sure you do for Ronnie.
Obviously I'm no help, sorry, but I know that urologist do a lot with sexual function and i'm sure they know what is limited with his SB.
Good luck! I hope someone can message you personally who has real life experience.
Just The Tip, Ronnie sees a peds urologist named Dr. Koo at MCV. I really like him, and am dreading the time when we have to change to an adult urologist.
ReplyDeleteIf you google the pertinent terms, a lot of good information comes up. It sounds like there will be some impairment, but the extent of it varies from person to person. Perhaps his doctor can get you access to these articles, as well: http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2643337/k.868E/Adult_Issues.htm
ReplyDeleteThis "Ask the Expert" link might be useful, too:
http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.5822809/k.8166/Ask_the_Expert_Question/apps/ka/ct/contactus.asp?c=liKWL7PLLrF&b=5822809&en=cjKSL2OEKfJVJ2MJLlIOKXONKoL2LcNMJmI0L6OKLnK5JmL
I applaud you for working hard to figure this out! I would definitely speak to his urologist, as far as I know that would be within their field
ReplyDeleteHe is at the spina bifida clinic isn't he? We have an appointment there in January. Our urologist at Children's Urology of Va told me last week that Dr. Koo is leaving...and they don't have a replacement for the SB clinic, because he said he is trying to get the job (his son has SB and he's a peds uro)...
ReplyDeleteI hope we get to see him before he leaves, I could really use a 2nd opinion.
I wish I had some answers, but I have a girl, with her own set of sexual questions. I applaud your willingness to be so open about this. that means your son has a chance of having a healthy sexual life.
ReplyDeleteWhoa, Just The Tip, Dr. Koo is leaving???!!! I hadn't heard that. Great, now I get to stress about something else :)
ReplyDeleteI have no answers for you. Sexuality can be such a tricky issue, Ronny is lucky to have such great mother.
ReplyDelete