[1000amys]

My 10-year-old, Her Royal Highness, has Sensory Processing Disorder (highly sensory defensive, but also sensory seeking). She also has problems processing information and recalling information. On one standardized test her Processing IQ was 70, while her Verbal IQ was 120. She can be incredibly articulate and seems very intelligent, making it quite difficult for people to understand her difficulties.

In school she is often perceived as lazy (despite multiple evaluations, her IEP, and my tenacious advocacy). She also comes off as spoiled, which we all find very frustrating. I find that even now that I can explain her actions and reactions to people (we were a little late to O.T.) they ignore my information and waste everyone's time by believing what they perceive to be true. Drives me nuts.

Today, at church, she borrowed a 3DS video game from another child. The stylus got lost. All of this was unknown to me until after church, when he told his mother (who is also the nursery attendant, so it's kind of important that we get along) that the stylus was lost. Apparently when she confronted Her Royal Highness about it, HRH denied all knowledge and refused to help look for it. Now of course, in her world, when she is verbally confronted it is a threat to her physical safety and she shuts down. Even if she knew where the stylus was, she wouldn't be able to access that information once she is fearful. But to the kid's mom, HRH was blowing her off.

As I was strapping the last of my kids into the car, his mom confronted me. She was by then very angry with my daughter, and quickly with me. My basic position was that I am sorry it was lost (I didn't even bother to point out that we don't actually know how it got lost, and that her six-year-old could possibly have lost it himself and pinned it on another kid when his mom got mad at him), and we would be happy to replace it (and not borrow it again). His mom demanded that my daughter come into the church immediately and help them look for it.

I tried to explain that at this point, my daughter's "help" would be worse than useless, but she refused to try to understand my explanation of processing issues. Also, I had two toddlers to get home for naptime; so I had no interest in sending one kid back into the church to not help find the missing stylus. I assured her that I was in no way making light of the situation, and again said we would replace the stylus.

She was furious, and said that I was making light of it, accused my daughter of stealing it, pointed out that she had spent $200 on the 3DS, and added that her son never even uses the stylus. Then she stomped off.

Obviously, I have a lot of damage control to do as far as our personal relationship (and I have already called the pastor to assure her that we will replace the stylus and purchased a four-pack for $10).

My more serious problem, though, is how do I advocate for this kid and teach her to advocate for herself as she gets older? How can I get people to understand that I am not making this up and am not just making excuses for my daughter? I am so tired of arguing with people who do not get it, but most people do not get it.

Her math teacher last year actually said in an e-mail that she needed to "brave up and learn to respect authority." So, first of all, just getting out of bed in the morning requires a lot of courage on her part, because she is so convinced that the world is threatening. And second of all, she is not going to be able to respect authority if she feels that she is in danger and the authority will not let her keep herself safe (i.e. go out into the hall when she is overwhelmed in a classroom of 30 kids). So we can either make a plan for her to do that without disturbing the class, or she can go on making a disruption in order to get sent into the hall. Because that's not dysfunctional.

She has been to O.T. (but not with the school district, because sensory processing disorder is imaginary or something), is seeing a therapist, has had therapy specifically relating to anxiety reduction, has an IEP for learning disabilities, and trust me when I say that homeschooling would not be a good idea. We have printed business cards for her to hand to people who insist on hassling her about what she won't eat, and also explaining her inability to respond well to verbal interrogation (will those help if she is ever arrested?), with my phone numbers on them. In her favor (I guess), she is a small, blonde, blue-eyed person with finely-honed manipulative skills. So, people generally like her and don't perceive her as threatening.

Any ideas from folks who have BTDT?

So how do I deal with and help her deal with encounters with the adults of the world?

[Barksum]

Sigh. It IS tough. We've had similar situations.

There is no short, quick fix for the situation. People do not believe in an invisible physically handicapping condition. If they can't see the difference, they don't believe there to be a difference. Brain differences are physical issues that can be handicapping to the individual...but unless you have a visible sign, people won't acknowledge that it's there.

There is a book by R. Lavoie titled It's So Much Work To Be Your Friend: Helping the Child With Learning Disabilities Find Social Success. I think you'll find some helpful info in there.

There are appendices that address things such as "Top 10 Behaviors That Annoy Adults", and "Top 20 Manners That Adults Appreciate". These go a long (long-long-long) way toward helping a child with processing disorders present themselves well.

I found the book helpful because I don't always see my kids behaviors in the same way that someone who doesn't know their brain issues does. So to me it's 'normal' that a kid might shut down, have a flat affect, and be unable to answer questions when they're upset. To a person who doesn't understand it looks like rudeness, sullenness, or lack of interest. I'm not always going to be around, so I want my kids to be able to advocate for themselves, and I figure good manners will help set up an environment where people don't assume that my child is rude or unkind.

I don't know that some of my kids will ever be able to explain their situation, ability to understand, or even their feelings to others in (relatively) casual social situations. So I'm gobbling up any info on how to help them that I can find.

[1000amys]

Barksum, thank you so much for your reply! It makes me feel like I'm not crazy. Well, less crazy, anyway. I will definitely look for that book.

[alys1]

Suggestion that may help. One blogging mom with two children with severe issues finally settled on a presentation booklet to show the school at the beginning of the year. I've had similar thoughts, and written some things down for teachers. I don't try to deliver this information in the middle of a "see the room, meet the teacher" event, where the teacher is responding to 20 or more parents in an hour or two.

For instance, I've said, "He's PTSD, anxious, and hypervigilant. This means he is constantly scanning his environment for threats. Because of that, noises he doesn't understand worry him. Things like a door slamming to the restroom down the hall, a janitor with a trash can on wheels outside the window, a librarian with a cart of books outside the window. All you have to do is tell him what the noise is the first time he hears it. Once is enough, his brain then catalogues it as 'not a threat' and he's fine.

"He will (compulsively, and without ability to turn it off) also be trying to keep track of where every child in the class is and what they're doing, in case they might want to harm him. He has very good reason for this: the was he was treated by adults for 3 years. If you could place him so his back is to a wall, or so there are no children behind him, that would be very helpful. Imagine a soldier coming back from war, and wondering what's behind him -- unfortunately, that's his reality.

"I want you to know you're dealing with the 'new and improved" model. We've both worked very hard in the year since he arrived, and he reacts violently far less often, he really has improved 300%." His kindergarten teacher told me what I wrote really helped her understand him.

Adoptive mom Diana took this further, made a presentation book with many pictures, few words. She first showed it to a "tough" principal, who loved it. Story and ideas here:
Gold to Refine: School Meeting Idea

PS: another adoptive mom asked herself once what was different between herself and everyone else at the endless meetings for her son. 1) The other people were in power suits, or at least business casual. 2) Everyone else came in with a notebook or binder to set down on the table 3) Everyone else had business cards. So, she started dressing up for the meetings, got herself a 3-ring binder and started adding EVERYTHING about her children, so if someone forgot what the IEP said, she had it (copies in a sleeve to share), and she printed business cards. Dunno what hers said, but mine would be something like "J's Mom, dedicated to utilizing every resource to help him become a fully functioning, well educated adult", with contact info.

[millie58]

My Ds has PTSD. Of course, the school folks aren't keen on this. There's no pill!! He's actually slated to go to a structured school setting. I'm hoping this will help him as he heals. Love the idea about the binder.

PS: Sinead O'Connor wrote about having PTSD. She said people shouldn't assume people with PTSD are crazy! I wish school personnel would learn about these disorders.

[ladyjubilee]

Originally Posted by 1000amys

I tried to explain that at this point, my daughter's "help" would be worse than useless, but she refused to try to understand my explanation of processing issues......So how do I deal with and help her deal with encounters with the adults of the world?

I don't think my answer would be supportive of your view point. Personally, if it had been LG, LG would have gone back into the room and helped look. Even if that just meant a excerise in me modeling how to bend down and look under the table, move a chair to look....Then modeled an apology and an offer of restitution. From my point of view, modeling is one of the techinques that can be used to help a child deal with others.

I'll go even further in what may be our view point difference. I don't believe that other adults or children have to make excuses for our children's actions. If LG screams or hits or pinches, it hurts other people. Whether he is autistic or not is pretty much irrelevant and those actions needs to be addressed. Sensory or not, it impacts others and I can't expect others to just say, "well, hey, that kid has autism, its really ok if does that because I need to be understanding."

[Barksum]

I also, depending on the situation, have the kids go thru the motions. BUT...having two toddlers in the car and being brought into the situation by an irate parent some time after the initial problem set everyone up to not do so well, regardless. If the OP was on her own (no other responsible person who could sit in the car with the littler kids) dragging whiny toddlers in to 'help look' for a needle in a hay stack might not have actually been so helpful.

The follow up, though, should be that a discussion and explanation should ensue with the child re: other people's property and the need to be careful and to replace (out of their own money) those items that were lost. A note of apology when the replacement item is given would be appropriate, too.

(...and beside the point, but one of the first questions on my mind was, "And why do we have this electronic game at church?" followed later by, "Why are you (parent) not supervising a bit more closely a game that cost you so much money and is worth getting so upset over?" But that isn't particularly helpful and I'm sure the other parent would not appreciate those kinds of questions.)

[millie58]

ladyjubilee: when kids with PTSD sense harm (whether real or not), they shut down. My DS basically has to calm down on his own. He yells, curses, stomps off; we leave him alone, then he calms down. But anyone responding to him only feeds the fear and anger more.

[1000amys]

Alys1, thanks for your suggestion. I looked at the blog, and will see if I can get something like that done before school starts next year. She'll be at the same school, but in the middle school; so all the teachers will be new to her (except P.E., I think).

Barksum, you again hit the nail on the head. It was the particular circumstances. I was the only adult present at my car (although my sister told me today that the irate parent confronted her as well while she was trying to maneuver her toddler son and our 94-year-old grandparents down the tricky steps out the front door of the church to her car), and Her Royal Highness had totally shut down. I knew sending her with the boy's mom would create more anger and frustration for the mom, because HRH would not have had the right responses to questions or instructions. It will absolutely be replaced, and she will absolutely pay with it out of her allowance. That was never a question, even though I had no proof that it was even in her posession when it was lost; I was totally willing to take their word on that.

On top of that, it was the little kids' last day with us at church. They are unexpectedly going home to their mom in a week-and-a-half, and will be on an overnight visit all next weekend. So the fact that we had all made it to the car without anyone having a total emotional breakdown (#2 had set off our car alarm, but that's pretty minor for her) was pretty much a miracle.

Ladyjubilee, I guess you're sort of reframing the same question I started with, which was how do I help her learn to deal with a world that is not going to understand why she reacts as she does? It's not about not holding her responsible; it's about knowing how she will react in a particular situation and how that is not going to help fix the problem or make anyone feel better. No one was bleeding to death, so at that moment I could see no value in doing something that was being demanded right then. Especially when I knew it would actually make things worse when HRH appeared uncooperative or unresponsive. I acknowledged the problem, and said we would replace the missing item. Since her parting shot was, "He doesn't even use the stylus," I am confident they won't miss it before next Sunday.

It's funny, because all yesterday afternoon I kept thinking about how I really don't think it's a good situation anymore to have this woman supervising my older kids, which she has been doing while providing all-ages childcare in the hour before the church service while parents are at adult Sunday School or choir practice or committee meetings. However, I felt bad about saying so; because lately we are the only family using that service at that time and I didn't want to cause her to lose an hour of work. Then I got a very apologetic e-mail from the pastor saying that the mom was refusing to provide that hour of all-ages childcare anymore, so problem solved. I called the pastor and explained I totally agreed with that decision! Then our pastor, bless her, gave a succinct summary of her perspective on the situation, including the understanding that HRH shuts down when afraid. How did she get so smart?

In turn, I told her how our #2, whose whole world-view is that she is unloveable, stupid, etc., had made a folded paper "fortune-teller" and was reading me the fortumes on the way home from church. Instead of the usual "You are fat" and "you are stoopid," they were, "God loves you," "People love you even when they are mad at you," etc. So I guess she was listening during the children's sermon...it may have helped that it was conducted while they all jumped into and out of a heart taped on the floor. I know I've wandered off topic, but it was just so cool.

Thanks again for all the ideas and responses!

[qs mom]

My son has PTSD and he recently had a violent episode with me. I took him to the hospital, they sent us home - a story for another time.

When he went to school, he told one of his teachers that he hit me. This teacher - a male teacher - proceeded to tell my child that if he had done that to his wife, he would need to be hospitalized because he would have hurt him. When I picked him up for a doc's appt, his other teacher - the female teacher - grabbed him by the arm and screamed at him that he needs to love me unconditionally and hit a pillow, yada yada.

I was furious, but remained under control and took him to an appointment. I emailed the teachers, explaining PTSD. The reply came that my child needs to learn to take responsibility for his actions.

So, sometimes there are people that refuse to even try to understand.

Understanding is not excusing.

[Barksum]

Sigh. BIG sigh. YES, our kids DO NEED TO LEARN TO TAKE RESPONSIBILITY for their actions. They really do. Having a problem of some sort is not a free pass for bad behaviors.

The process of learning responsibility may be long and look very different than that of a 'typical' person though.

[1000amys]

Originally Posted by Barksum

The process of learning responsibility may be long and look very different than that of a 'typical' person though.

I totally agree with this. I thought the previous poster, qs mom, was saying that threatening and shaming her son were not helpful in teaching her son to take responsibility.

It's so frustrating when people think they know how to teach kids responsibility, and instead do things that make the kid even less likely to take responsibility.

[Barksum]

Sorry, yes, I was being somewhat sarcastic in my agreement with Q's mom, but I was agreeing, too. I get SO frustrated with professionals who really believe that if they don't see 'action being taken' that the kids are getting a Free Parking card and no consequences for the things they do.

It was SO hard when my oldest adopted child was small. People just automatically thought I was a poor parent and responsible for his problems. That gets sooooo old and is really rather wearing.