Boy Talk

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…

Signing in a Hearing World

When we were returning from our trip to Williamsburg this past Saturday, we decided to stop for lunch at the Candle Light Restaurant. It is an out-of-the-way little place that is frequented more by locals than tourists, and on previous trips we were impressed by the home-style quality of the food.

Although the building had been remodeled a bit (and made more accessible!), the owner and staff were the same as was the menu. A server came by and took our orders, and right after that another person stopped at our table and asked about our drinks. I mentioned that the server had taken the orders, but this person said she would get the drinks.

I noticed something in her speech, a quality to her voice that seemed both familiar and different at the same time. I couldn't quite put my finger on it. But the next time she stopped by our table, I figured it out!

She had apparently seen all of us signing to each other, so when she returned to the table, she also signed. She was Deaf or hard-of-hearing and the quality I heard in her voice was that of a person who leans to speak without fully being able to hear.

Ronnie was thrilled! He loves to come across people who sign, people with whom he can easily communicate. I love to see him get so excited, but it also is a bit sad.

That which most of us take for granted - the ability to converse with others - doesn't come easily to someone who is Deaf and lives in a hearing world. I wonder if it bothers him, or if he is just accustomed to it...???

The Birds and the Bees

My daughter, Jessica, is 18 years old and wants a boyfriend. Problem is – I’m not sure she understands what that means.

I’ve tried through the years (I adopted her at age 9) to explain the birds and the bees in a way that her significant cognitive impairment could understand. But, I never felt like I was getting through. Combine that cognitive impairment with the very real possibility that she was sexually abused while in the foster care system, and sex ed did not come easily.

But it’s time to figure out something. Jessica is an adult and wants to enjoy things that all adults enjoy, including the companionship of another adult. I believe she has a right to a sexual relationship if that is what she desires, but at the same time, I believe she needs to be taught what that means.

So several other members of her Person Centered Planning team and I went in search of resources. What we found is called Life Horizons. It is a two part, full curriculum which addresses sexuality.

The first part talks about the Physiological and Emotional Aspects of Being Male & Female. We previewed the CD yesterday, and it is graphic, but not graphic in a salacious way. And since it is presented as slides (no live action), slides which may not be appropriate can be skipped. The second part includes sections on Building Self-Esteem & Establishing Relationships; Moral, Legal & Social Aspects of Sexual Behavior -- Male; Moral, Legal & Social Aspects of Social Behavior -- Female; Dating Skills & Learning to Love; Marriage & Other Lifestyles; Parenting; and Preventing or Coping with Sexual Abuse.

It’s a lot of information, information which cannot be covered in one sitting. But, it appears to be very comprehensive and exactly what Jessica needs and wants. I will keep you posted as we start through the program, but I am curious as to what you think now.

Are you a parent who has had to struggle with this issue, and if so, what did you do? And, do you feel it is important, even critical, to educate a person with a significant cognitive disability on these matters? How have you responded to questions about dating, marriage and sexuality? What advice do you have for me as I undertake this journey with Jessica now, and Ashley later?