safe

I wrestled with whether or not to share this. With as much as I tell you, there is, of course, far more that I don’t. Some things simply are not appropriate for public consumption. And normally this would have fallen squarely into that category.

But ever since I wrote to Brooke’s team yesterday morning, I’ve had this nagging thought.

You see, I wrote a post yesterday about my anger at a teacher who might have helped my girl. And didn’t. Who might have shared information that would have prompted us to take action earlier. And didn’t.

When you know better, you do better.

I know better.

So I’m choosing to share this because I think it HAS to be talked about. Because it’s real. And it’s terrifying. And because we need to figure out how to keep our kids safe. More importantly, we have to figure out how to give them the tools to keep themselves safe.

I’ve scrubbed the following e-mails of the more personal details. I am desperate to find the line between protecting my girl’s privacy and protecting all of our children’s innocence. I pray I am on the right side of that line.

One note ~ I realize that without the details, the following may give the impression that something sinister has happened to my girl. I assure you that is not the case. 

Team Brooke,

I wanted to make you aware of a conversation that I had w Brooke at bedtime last night. As I kissed her goodnight she said [something that I found very disturbing.]

I tried not to overreact, but told her somewhat firmly that [no one can] touch our privates. That only a doctor or mommy or daddy can when she needs help showering or if she has a problem.

Since her sole response to this was [not reassuring] I had no way to know if I’d gotten thru.

As squeamish as I am about writing this, I felt it was necessary on a number of levels. Firstly, to solicit any and all suggestions / resources about how to teach Brooke to keep herself safe (and not desperately inappropriate). Secondly, because we all know that she scripts conversations and I can only imagine what would go through your head if she walked into school [repeating my words.]

I’m thinking that perhaps a social story would be a good place to start, but Lord knows it will have to be carefully written. We are also going to call the neuropsychologist that she worked with last year (looped in on this e-mail – hi, E) to see if she has some suggestions – perhaps a way to deliver the message through play therapy / dolls.

I’ve long been concerned about Brooke’s vulnerability as an abuser’s perfect victim. Last night forced the reality of that concern into sharp focus.

Your thoughts on this are very much appreciated.

J

Sent from my iPhone

I got a number of responses, ranging from ‘Thanks for the heads up” to “I’m here for you.” Not one of them questioned the validity of my concerns. Which was both reassuring and terrifying. Even when you know you’re right, you still hold out that hope that someone will be able to prove that you’re not.

But there was one response that was different. One that offered comfort, action, the beginning of a plan. One that got me breathing again.

Hi Jess,

O.K, we can handle this….try not to worry too much. […] What this is is an alert to us that now is the time to start actively teaching Brooke about body parts and privacy and touching, etc. etc.

I have a friend who made a great chart of a person with all of the body parts that you could/could not touch and who can touch…I will email her now and see if she still has it and if so if I can borrow it. I think that a social story could indeed be helpful, I wonder if having her help create it on the iPad would be good as she expresses herself so well in her art.

I would be happy to take a stab at this.

I am confident that Brooke has the ability to learn how to protect herself from anyone who could potentially want to take advantage of her in this way. It’s time to get to work on this.

I’ll let you know if I can get that body poster…if not, I can make one and show it to you to see if you think it is okay.

Best,

B

I wrote back last night. It was late and I desperately needed sleep, but I had to tell her. She needed to know.

B,

Please know how grateful I am that you are in my baby’s life. (And mine.) There are tears streaming down my face as I write this, but I need you to know how much it means.

Years ago a dear friend of mine gave Brooke a beautiful silver cross engraved with the words “Angels shall guard thee.” And they have – her entire life they have.

You are one of those angels, lady.

Thank you.
Sent from my iPhone

I thank God every day for the angels who walk with our children – who do everything in their power to help us guide them, teach them and to keep them from harm.

In the end, our kids need every tool we can give them to keep themselves safe.

It’s hard enough to talk to neurotypical kids about this stuff. It’s awkward; it’s uncomfortable and it’s scary. Teaching your autistic kid about it is, well, terrifying. But it has to happen. In some form, whether through conversation, play, technology, pictures, social stories, it simply has to happen.

As we figure out how to approach this, I will share resources here. If you have any experience with this or ideas / suggestions / resources, I’d be most grateful if you’d leave them in the comments below.

I pray I’ve made the right decision in sharing this.

In the meantime, may God – and his legion of angels – keep all of our babies safe.

30 thoughts on “safe

  1. Have you seen the book “Taking care of myself” by Mary Wrobel? It covers both boys and girls and is very easy to read and share with a child. Along with everything else there is a chapter about “Teaching about touching and personal safety”
    Eva

  2. This is the subject that truly terrifies me to my very soul. My baby girl is only 5 and truly not in a place where I think she would understand yet. But I know I need to start collecting ideas and info for when the time is right. I am still not able to put my girl on the school bus because I am so afraid she can’t tell me if anything was wrong. Thank you so much for sharing this Jess and for giving all of us a place to share ideas and info before any if our babies gets hurt!

  3. I’m so glad you shared this Jess. It is something that all parents think about and parents of kids with disabilities worry about on a whole different level. I know that I’ve started to think more and more about it, and part of me wanted to hide from it, run from it, but I know I too must start the conversation, in some form with my guy. I love the idea of a body chart. Visuals are going to be key in this process with my guy. Thanks for sharing so widely, this is going to help a lot of people.

  4. My guy is a little young (just turned seven) but I’ve been thinking hard about this conversation. I’ve been telling my guy what his private parts are and that nobody should touch them and that if anyone does, he should tell me. I’ve removed myself from the bathroom when he takes a shower and I’ve given sole responsibility for that to DH because our son cannot do it by himself and being a toe walker presents it’s own challenges standing in the tub.

    You’re doing a great job, Jess, and this conversation DOES need to happen and all of us parents need to talk about it amongst ourselves and then our kids. I remember my own mom having THE conversation when I started with my monthlys. She made my younger sister sit in on the conversation, and proceeded to tell us almost nothing and never looked back. I get that it must’ve been very uncomfortable for her, but she really dropped the ball there. ALL parents must do what they must, no matter how uncomfortable it makes them.

  5. I just had this conversation with my middle daughter’s team again yesterday. She’s a wanderer and a bit of a daydreamer with no real social boundaries. We’ve been doing lots of social stories, but that chart sounds perfect. I wonder if it might even help with my nonverbal daughter when she’s a little older…If you’ve helped to protect even one child by sharing this then I don’t see how you could second guess yourself by sharing it. These are conversations we need to have. Thanks for sharing.

  6. parents: add to your discussion what is okay and what is not okay to take pictures/video of. Predators are smarter than you. Technology can be used to violate/exploit a child without a person ever laying a finger on her. I am not being unecessarily alarmist. I am speaking from direct experience. Your child should know who is allowed and who isn’t allowed to take pictures of her and that it’s never okay to take pictures nude/using the toilet/getting dressed/undressed EVER. Futhermore: ask your school for a copy of its policy regarding photographs and video recording in school. Ask who is allowed to photograph my child in school? in what areas if the school? will i be notified if my child’s picture is taken? is video used for “teaching or therapeutic/social instruction?” if so, ask: may we have a copy of all videos of our child?
    Better yet: never give a school permission to photograph or videotape your child at school under any circumstances. Trust me. You don’t want to know how horribly wrong it can go.

    • OMG, totally didn’t think about the pic/video aspect of this. Thanks for adding it to the conversation. A child can be violated in nanoseconds without anyone putting a finger on her. I am sufficiently creeped out, but grateful for the input!

  7. Thank you for bringing this issue to the fore. I don’t think it’s ever too early to start the process of teaching our children how to protect themselves and develop an understanding of boundaries and respecting their body. This really has me starting to think about how to approach this with my son. I like the idea of the visual but also know he responds well to musical reinforcement as well as video. Um, obviously, not an appropriate place to use video, but I’m thinking I may need to find or write a song about this for him.

    And “B” is definitely one of Brooke’s angels. xo

  8. I so wish that somehow we were exempt from this! Like we don’t have enough on our already running over plates we have to add this worry. When these concerns first raised their ugly heads, I ran out and got the American Girl The Care and Keeping of You book. We pulled the team together and wrote a social story to address privacy. We did everything we could to address this issue, yet it is still my biggest fear.
    Thank you for bringing this topic to the discussion table! We moms do a lot of triage, but this is a topic we need to be proactive about! xoxo! Becky

  9. Thank you for sharing…it is a topic we have mentioned to our son, but he doesn’t quite grasp. I love the idea of the person and indicating where it is and is not ok. We will use a social story, too…those work well for him. Thank you! And I’m so glad Brooke has an angel watching out for her.

  10. I think you defiinitely landed on the right side of the line. You shine the light where it is needed, in a thoughtful, careful way. Always. Please share what you find – that chart sounds amazing! xo

  11. I think you absolutely did the right thing in sharing. It’s something we all have to face, as scary as it is. And you’ve opened up the conversation. Now we can talk about it, share ideas, and help each other. That’s what this community is about. I applaud your bravery in making this decision. Thank you!

  12. I’ve been talking to my almost 10 yo daughter about this for several years now. I was glad that I had already broached the subject when I saw a boy that no one with the birthday party group knew, approached my daughter and started flirting with her at the skating rink. She was 7. A couple of months ago, some of the girls in her class informed me that she and a boy in their class had kissed. She’s in 4th grade with an aide. We talk about these things at least once a week, but like so many of our kids, she desperately wants to be liked. The statistics for sexual assaults on girls with ASD is alarming; but then, so are the stats for sexual assaults on girls in general. Like with everything else involving our children, we try several approaches and hope that something works. My daughter isn’t shy about telling her friends “No” when she doesn’t want to do something, but we are all sexual beings and she buys into the Disney fairy tale of the handsome Prince with the kiss that can wake up Snow White and Sleeping Beauty. That is the problem as our children reach puberty.

  13. I want to thank you for your vulnerability and bravery in posting this. This is something myy husband and I often talk about but never feel like we know how to handle with our ASD child. I will actually be talking to my child’s team about a chart or social story on this subject. Again, I want to thank you. I think you did the hard right thing by posting this. Blessings to you, your family and all of the wonderful people working with you!

  14. thank you fro writing this, Jess and spreading this message. I worked for seven years in a major US city as a child abuse/neglect investigator. i wish I could unsee so much of what i have seen. I have always talked to my boys at every bath time about their bodies, good touch/ bad touch, who can touch and where. it does not have to be a scary conversation but it has to be often. One big talk is not enough. We also need to get our schools to stop teaching our kids to keep secrets from parents. it is very common that they will work on a special holiday project for parents and the teacher will tell kids to keep it a secret from parents. I hate to be a killjoy, but we can’t allow this. No adult should ever tell a child to keep a secret from their parent. this should be taught as unacceptable across the board as young children simply aren’t sophisticated enough to differentiate. thanks for letting me rant a little 🙂

  15. Absolutely must be talked about, thank you for posting! Even with all the proper supports and supervision, these things happen and it’s not just adults. Many of our kids are in special needs classrooms with other kids the same age going through puberty and raging hormones, stuff happens. Autism be damned, puberty comes right on time. They don’t necessarily understand what they are doing or why it matters so much, but it does matter and that’s why we need to reinforce safety rules constantly.

  16. Thank you (again!) Jess for such an important post. The comments to the post are already full of great ideas. My F is extremely literal, so the comment about not keeping secrets from parents is a good reminder. And the picture and video alert is SO important in our digital world when people are taking pictures and videos constantly. Ugh. Hard to think about that one.

    I don’t want to be overly sensitive, but the B’s team members who simply said “Thanks for the heads up”, would concern me a bit. You didn’t just tell them she had a runny nose; this is important and sensitive and needs to be done well. Ms. Heads up might need a bit more of a heads up. And thank god for your Ms. B.

    Blessing to Brooke; may she always be safe from harm. Your efforts will do everything you can to ensure that safety.

  17. We have been talking for years about appropriate behavior. She can repeat all the safety rules, but on the special, supervised bus, some boy told her to take her shirt off, she was completely willing to do so. More talks, at home, school, therapy…Now she is an older teen, and remains completely boy crazy, but if I need to help her with her shower or hair, she is quick to tell me, “No touching the body!” Trying to supervise sexual urges on top of supervising every other aspect of her life is a challenge for sure. I guess what I am trying to say, is I am not too sure our kids will ever be really safe in the big world because of the unawareness of social situations, so never be too sure your kid “gets it.” I do, however, pray alot, and hope her band of guardian angels is on duty.

  18. One of the things that we have taught our children is basically the “Swimsuit” idea. Any place that your swimsuit covers is a boundary (no touch zone). It was easy for our son and daughter to understand when they were little. Teaching them that docs and parents may only touch IF there is a medical reason, and ONLY with the child’s consent. The most important word we can teach them is NO means NO! We taught them that if anyone makes them feel uncomfortable by talking about their privates or trying to touch anywhere that is outside the “boundary”, they need to say “NO” and tell mom or dad. NEVER be afraid to talk about the truth. Above all…Safety first!

  19. Jess
    I thank you for your honesty, bravery, and advocacy. I too have the fear that someone might take advantage of my Dawson. It is a fear that can stop me dead in my tracks. We talk to Mae Mae about this subject but not Dawson. Your post has made me realize that we must talk to his team about this subject. We need to figure out how we can help Dawson understand and learn about “his body” “his privates” “good touche” bad touch”. I also want him to know this so that he would never hurt someone. I am crying as I write this because nobody wants to think of their child hurting another child. I truly can not imagine Dawson harming anyone. But dawson is eight and a half years old. He will be a teenager before I can blink an eye. He will need to learn that he can not touch another person privates. As uncomfortable as i it makes me to type this he will need to learn both and it is my job and Dave’s job to put the tools in place so that he can learn this. As we explore things with his team I will forward you any resources. Thank you again for shining a blue light on this….I am forever grateful…..

  20. The “no means no” is such an important thing to try to teach and we are trying desperately to get my 10yr old son to understand this for everything ie he needs to be able to accept that no means no when he wants a cake so that when the hormones hit, he knows that no means no when a girl says it. Bobby Newman always says you have to be thinking 5 years in advance and working out what is going to be important in 5 years time and starting the process of teaching that early. Very scary.

  21. thanks for posting this. my daughter is only 4, but I worry about this kind of education being necessary in her future as well. if you are able to share the resource of the body parts (where can/can’t be touched) that would be a valuable resource to many of us I’m sure!
    thanks goodness for the “angels” in our children’s lives & may god protect them from the “devils”

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