December 1, 2012

Testosterone does not discriminate

Alex understands boundaries most of the time. She knows what appropriate behavior is and what it is not.  She still has meltdowns when she is uncomfortable about something, or we expect her to transition too quickly. Mostly, she is a mature and poised 19 year old who loves to be the center of attention. I am proud of her.

As far as netiquette, I also think Alex understands boundaries (with the exception of one very handsome and flirtatious cowboy). I check her FB account regularly and although her “likes” are very different than mine, I have not found anything dangerous.  I also monitor her friends, and so far have not noticed any unfriendly friends. I trust her.

However, what I cannot keep up on is facebook messages. I know Alex will try and chat with people she finds while online and this can be a nuisance for others.  Often when she initiates conversations people do not respond back, and that is the best way for her to learn.  I want her to learn her own lessons.

Recently, Alex approached me with a chain of messages she has received from a young man in our Valley.  He wrote her the following and she responded in the affirmative.  

Do you want to hang out?
Do you want to be my GF?
Can I be your BF?
Can we change our FB statuses?
Can you come to my house when my parents aren’t home?
Can we kiss?
Can we sit on my bed and cuddle?
Can we do other things?

This final inquiry scared Alex and she came to me. I know Alex’s pursuer, and he is just like every other 17 year old I know, including our son. Nature is taking its course and my sweet young son is growing facial hair and beginning to look like a man. Sports are still very important to him, but so are girls. This is normal.

We have always asked to have Alex included in any sex education classes at school, and reinforced in the resource room. I think Alex understands these boundaries, but she is very trusting, and this scares me. She will soon be out of our house and my ability to supervise her relationships will disappear. I am not sure I trust others.

However, when two people who have developmental disabilities have this conversation I get nervous, and begin to wonder….Just how much does Alex understand about sex? Will she say no if she is uncomfortable? Is she strong enough to hold off an aggressive testosterone driven teenage boy? Is she safe? I am scared.

And I do not know….Of course I want all my children to have happy and healthy relationships but what will that look like for Alex? Will she find enjoyment with a partner? Will she feel connected? I will never stop worrying.

Alex has temporarily decided to hide under her comforter, not because she wants to hide from her suitor, although I would like that. She will not let me take her picture until she has her hair colored and cut on Wednesday.  She wants to look good for her Special Olympic teammates who she will meet next week in Lake Placid. Oh no….more testosterone to worry about!


  1. There are some really great resources on relationships from Dave Hingsburger ... a full range of them. But, the fact that Alex came to you with the messages speaks volumes... if the conversation doors are open, then you have time to have conversations . . . and through those conversations you can get a feel for where she's at. The one thing that I always love/hate about Jess is that she wears her heart on her sleeve and, as Dan says, what she is feeling or thinking she shares... so that has been a great way to role with it and pull in resources. Of course we, like you I am sure, started teaching early on. We had a great set of books here about sexuality & relationships etc... with characters who had Down syndrome. Okay. Guess I'm not telling you anything you don't already know ... email me if you want a more detailed chat!

    1. Hi! I have a question: You say that Jesse wears her heart on her sleeve. Is this one of those common thing associated with down syndrome or is it more of her personality that makes her like that? Or just a mixture of both?

    2. Thanks Nan - yes, the more talking Alex and I can do the better. I just hope those doors are always open, especially around this topic.

  2. You know, this post gives me encouragement for Ciena's future. That she can have one beyond just our family.

    I am curious: When/how did you begin "the discussion" on boys and sex and everything in between?

    Ciena just turned 11 and is starting to...mature in a few areas. If my relationship with her wasn't so estranged, I think I would begin the conversation now. Instead, I don't really know what to do! And her dad DOES NOT want to have the talk with her. lol

  3. Hi Jess,the sooner the better...Does Ciena live with you? Do you ever have the opportunity to meet with her teachers. This is something we did very early on - with Alex it worked best if she learned something in school first and we reinforced at home. Also Nan (above) has great thoughts and books around this. We used the American Girl book - My body, my self. Email if you want :)

  4. Teenage boy mom here. Talk, talk, talk. I agree the sooner the better. It struck me though the things we worry about open communication, trusting, sharing feelings etc are what we hope for in a loving relationship. I'll talk to my son , you talk to your daughter then lets pre that bad? :)


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