Monday, February 4, 2013

Compliance and Special Needs

A while back a close friend asked me if I fear that my girls will be sexually abused because their disabilities make them easy targets. The answer of course is Yes. The statistics on this topic wholeheartedly agree, and that sickens and terrifies me.

But I told her that of all my children (and honestly I fear abuse of my typical children as well) the one I worry about the least is Kimani. While she might seem like the easiest target of all, really she would be the hardest for a predator to take advantage of. Kimani is not compliant... not physically or mentally. If you tried to get to her in that way she would fight you like a wild cat, and she would scream like one too. I know this because even I, her beloved mother, can’t get a good look at her girly parts when I need to without enlisting the help of daddy. And Kimani cannot be manipulated with promises or threats... you cannot talk her into anything.

naughty_girlNow ya’ll know Kimani is getting big and strong but isn’t mentally developing anywhere near the speed of her body... which means that her non-compliance and impulsive behavior is getting harder and harder for us to handle. She is always a one-on-one and often a two-on-one kid and can never be left unattended for any length of time, unless she is in something she cannot get out of, like a highchair.

I want to take her to Boston to the group of pediatric neurologists there that specialize in post-meningitis brain injury but in order to get this approved by our insurance I have to jump through hoops locally to show that no one here can help her. The local ped neuro we met with prescribed an MRI and a daily dose of Concerta. Huh, it never occurred to me to drug her but I have done extensive research on Concerta and I could see how maybe this would help to calm her and give her what she needs to control her impulses. After thinking it over, I developed a fantasy where on Concerta she would be able to focus and learn, and maybe even go to our public school in their special education K-2nd grade room. I daydreamed that on Concerta, Summer would become like Autumn.

I filled the script and we tried it out. It was a liquid, and so yeah even hidden in stuff she likes, she spit it out. Then, even more well hidden, she spit it up moments later. But some of it took hold and she was different that day. She was subdued but clingy and she cried for me whenever I left her sight. I told myself that she hadn’t had the correct dose and that maybe she was kind of sick and suffering from a general malaise due to an illness... not the Concerta. I went to the doctor and got a script for the pill form and tried again. I had to come clean with her teachers and school nurse because one of the side affects of Concerta is loss of appetite and between that and a bout of diarrhea they thought she was sick and called me in to pick her up. During the discussion about how she was acting on it at school, her teacher said something like, "Is it worth it if she is no longer herself?"

Wow, just freaking wow. No, no it isn’t worth it. Especially after reading a post that blew me away about teaching our children with special needs to be compliant. Do I really want a little girl who will do whatever she is told by whoever tells her to do it? Am I raising my girls to be vulnerable because I am training them to do as they are told, no matter their own feelings about it?

There is a ton of societal pressure on parents to make their children with special needs compliant in order for them to be included in their communities (schools, extra-curricular activities, church, etc.) In fact I would guess that non-compliance is the number one reason why most kids with SN end up in self-contained classrooms or are asked to leave certain public spaces. And I do get it, I understand that Masha needs to go with the program if she is going to make it in a Gen Ed classroom... but at the same time it is likely that she may never be able to discern which authority figures (and for her that may be any adult or older child) not to comply with... even when it hurts.

So how do you raise well-behaved special needs children who may grow up to be too naive to protect their own bodies, possessions, or mental well-being? I have some ideas but not enough.

My kids are not forced to share everything. In fact they have things that are only theirs and I make it a point to tell them not to share those things. For now it is stuff like their drinking cups (my kids are color coded so they each have their own color cup) and certain pieces of jewelry. I also never force or even overly encourage my kids to show affection to anyone, including me. Heck, I waited almost four years for a kiss from Kimani and I would wait four more if she so chose.

But the most important one of all is that sometimes I allow a standoff between us. If one of my girls draws a battle line in the sand, I do not always cross it and win the fight. Sometimes I let their will be done because they need to know that their will matters even if they don’t have the vocabulary to defend it.

But Kimani... she doesn’t know what color your cup is, whose bracelet is whose, or if you brought a tank to the battle—so unless her safety dictates otherwise—she impulsively rules her universe... and I have no inking whatsoever what to do about it. One thing I do know is that I would rather deal with Kimzilla than turn her into more of a target than she already is.


DownTownDan said...

This brings up a lot of issues I had not really thought about before. I really like your approach to nurturing healthy boundaries. That's really interesting.

goldenleaves said...

This is a very good post! I love what you said about knowing her will matters even if she doesn't have the vocabulary to back it up. Good job mama!

Lisa Morguess said...

This is a tough issue. I've thought about it even with my typical kids - the whole societal expectation for kids to listen to adults, do what they're told, etc. What I've always told them, though, is that their bodies are their own property and NOBODY has the right to touch them in any way without their permission, and if anybody ever touches them in a way that makes them uncomfortable, or says or does anything else that makes them uncomfortable, raise holy hell and run! And if anybody ever does something and tells them it's a secret, or not to tell anyone, or not to tell their mom and dad, or that if they tell, someone will get hurt, then that means YOU COME AND TELL ME RIGHT AWAY, NO MATTER WHAT.

I think my older kids get it. But Finn is a whole different story. It's hard to know how much he understands. I don't believe that he has any understanding of boundaries or privacy or anything like that. I know there is a book from Woodbine House called "Teaching Children With Down Syndrome about Their Bodies, Boundaries, and Sexuality." I actually have it but haven't read it. Probably should.

Anna Theurer said...

This is an excellent post. I didn't want to put Ellie on medication because I was afraid it would take away her spunkiness [she has ADHD. Yes, I know she is young for this diagnosis]. Safety became a serious concern and we really had to make a tough decision. Finally, we did start a non-stimulant medication with Ellie (Tenex). The result was amazing. She is still Ellie. Sassiness and all, but her climbing behaviors are much more purposeful (ie climbing to get a toy, food, etc) as opposed to her blurry-eyed, confused, climbing/spinning/swinging (I cannot exactly explain it but it was like she wasn't there and she just couldn't STOP). Anyway, I know your post is more about compliance I feel like society expects everyone to fit into a certain mold and if you or your child does not, you/your child get slapped with a label or they must be "fixed".

Evie O'Keefe said...

I can't wait to share this and your blog in general with a mama I know who will love it. Thanks for always sharing your heart.

Post a Comment

Go ahead, say it.