STILL LEARNING TO BE SOCIAL

 

In preparation for Ben's IEP in November, I typed up this summary of Ben's social skills according to our observations.  I'm anxious to hear school's input on this.

BEN'S SOCIALIZING/MAKING CONVERSATION

 Issues:

1.      Wrong Answer- Doesn't answer questions appropriately or correctly,  ie. "Cow", "Mom", or just babbles.

2.      Delegate- Tries to get Jonah (or someone else) to answer instead.

3.      Whispers answer or answers into his armpit.

4.      Lack of eye contact.

5.      Not Understood- Talks too fast or has trouble with pronunciation.

6.      Shuts down- doesn't make any response.

 

Why we think this happens:

1.      Speech issues- Ben needs to continue learning proper pronunciation and proper speed of speech.

2.      Social Anxiety-  Ben experienced lack of socialization for his 1st 6  years in the orphanage so Ben doesn't feel comfortable or know  how to interact with people appropriately.  His orphanage years I'm  sure play a role, but we are hoping with each additional year Ben      has with us, this becomes less and less of an issue for him.  However, perhaps we shouldn't underestimate how much not having the basic communication foundations for those highly impactful first years is limiting him even now after being with us  5 years…

 NOTE: in our adoption/trauma education we had to take for           the adoption process, we learned that orphanage behaviors can        fade/drop off after the child is home with family for a longer time      than he was in the orphanage.  We are at year 5 1/2 so we are    almost at the half-way mark!

3.      Control- due to Ben's "hard past" of being in orphanage for 6 years, control is always his go-to emotion/goal.  Ben had to look out for himself for 6 years to make sure he survived and got the limited care and attention that was available to him at the orphanage.  So  everything Ben does, unless you can capture him at a moment   where he lets his guard down, Ben wants to control the situation.  It doesn't matter to him if having this control gets him positive or       negative attention, he just wants to be the one to determine what   he will do, how he will do it, and how others should respond/react   to him.  This means if Ben chooses to engage someone in        conversation, you will see a very different style of communication   than when someone else initiates conversation with Ben.  This is        when the issues 1-6 come into play.

4.      Jealousy- This is probably a subset of Control, but I believe Ben has social issues often because he is jealous of others getting attention.  By others, I particularly mean Jonah.  I will often see better social   skills from Ben when he is alone versus when the 2 boys are together.  Again, even if Ben acting inappropriately gets him in trouble, he considers this a win because he probably got more attention, all be it negative, than Jonah during or as a result of the social interaction.

 What we are currently trying to do to help Ben:

1.      Speech therapy at school and thru Rehab Resources.

2.      At home, we go over these Conversation Rules:

                   a. Listen to the question

                   b. Think about your answer.

                   c. Answer the truth.

                   d. Make eye contact.

                   f. Speak clearly

3.      Use of the speech device to assist him in being able to be   understood by those outside his inner circle.

4.      Building upon and encouraging Ben's amazing strengths   

                   a. Ben is very smart.

                   b. Ben has a fun personality.

                   c. Ben is hard-working and determined.

                   d. Ben has good command of the English language despite only learning it starting it at age 6.

                   e. Ben is resilient.  He is tough and strong.  He is a survivor.

                   f.  Ben's potential to do incredible things with his life.

 Possible Action Steps:

1.      Do you agree with all of this information from your experience with Ben at school and/or therapy?  Or is this something that we just  experience at home and social situations besides school?

2.      Are there specific goals/tasks that should be included in his IEP to help Ben in the social area?

3.      Any other help/resources that may be available to Ben to help him improve socially?

4.      Any help/suggestions for Andrew and I as we try to work on these issues at home?

PROBABLY JUST ONE PIECE OF THE PUZZLE BUT...

 

In July 2021, after having Lyme's Disease, Jonah's TSH level came back at 44!  The normal range should be .5 to 4.50!  

His endocrinologist suspects having Lyme's must have thrown his TSH off, so she upped his levothyroxine dosage from 66 mcg to 100 mcg.  

Starting in Aug into Sept, we started to notice more aggressive and angry behavior from Jonah: defiance, rude, hitting, throwing, kicking. This is not normal for Jonah.  His appetite and sleep stayed normal.

Starting the school year, this odd behavior continued and was even noticed by teachers.

So on 9-15-21, we contacted his endocrinologist to inquire if the higher dose was causing Jonah's irritability.  This is listed as a side effect of too high of dose of levothyroxine.  The doctor order TSH labs.  His TSH was <.10.  Normal range should be .5 to 4.50.  This showed the doctor that his medicine dosage was too high and so she reduced him to 88 mcg.

For his 10-11-21 6mth checkup, his labs were .53 which means he is in normal range.  

But the even better news is Jonah's behavior has evened out since going on the 88 mcg instead of 100 mcg.

However, I am not going to assume the medicine dosage was the only thing affected Jonah's behavior.

  Things were changing in our household starting in mid-August.  Stephen was preparing to go back to college, and Lydia was preparing to start college.  There is a chance that Jonah picked up on these changes and felt some sadness/frustration/stress.  

The boys also started with a new team at school due to being in middle school.  But probably to make things a little confusing for them, they continue to meet up with their old team from elementary school.  So this transition could also have been the cause of sadness/frustration/stress for Jonah.

The other factor we had to consider was with Jonah turning 11, hormone levels may be starting to change which can cause changes in behavior.  

When your child is non-verbal and can't express his thoughts and emotions, it's like a guessing game or process of elimination to figure out why he's having behavior issues.

I'm very grateful Jonah's endocrinologist listened to me and helped us out in this one possible cause.

But I'm suspecting Jonah's behavior dive was the result of all these different issues coming together for the "perfect storm". 

I'm very happy for Jonah (and us) that his behavior evened out again.  He is back to his silly mischievious self which is a whole lot more fun to be around!

SPRING UPDATE: SCHOOL, BEHAVIORS, HEALTH, AND ADOPTION STORIES

 

BEN:

Doing GREAT in school.  Almost every day we receive a note from his teacher complimenting Ben for his hard work and determination to learn.  Ben is improving in his handwriting, math, and reading skills.  We are so proud of Ben.  Ben loves a good challenge so if something is difficult for him, that motivates him to conquer it!  I think this kid is destined to great things in life.

A few struggles we are having with Ben as of late: I think the green eyed monster of jealously has been hitting Ben.  With all of Jonah's health issues, I think Ben is trying to command a little more attention for himself.  Unfortunately he doesn't care if that is positive or negative attention so he does whatever he cn to get us to notice him: defiance and trying to control everything (bossing people around, trying to discipline Jonah, TV remotes, turning on lights/fans throughout the house, trying to "cook" in the kitchen, trying to work appliances etc).  He's requiring a lot of surveillance these past 2 weeks and a little bit more patience on our part than usual.

JONAH:
Doing GREAT with peeing on his own.  Doctor is very hopeful once this infection clears up, we will be very close to removing the catheter!  

Our schedule is VERY busy with all appointments to keep Jonah healthy: labwork, physical therapy, behavioral therapy, urine cultures etc.  

Also Ben has a few appointments to thrown in the mix too, so we are hopping!

Having some really good days in school, and having some days where he struggles with attending.  

Jonah's sweetness has really amped up these past couple of weeks.  He is very polite and cuddly and just overall happy to hang out with us.  

BOTH BOYS:

We decided to tell the boys their adoption stories.  We have always referred to them being adopted, but we have never sat them down and fully explained what that meant.  

I remember a few years ago I was talking to another adoptive mom of boys with Down syndrome.  She told me that both her boys knew all about their adoptions.  At the time, I knew our boys were not at a point that they would understand if we told them.  Her boys were a few years older than ours.

So here we are 2 years later, and we decided our boys were ready.  

What really initiated this was the boys' teacher this school year was pregnant.  So the whole  "baby in the tummy" became quite the topic at our house, with our boys trying to associate that they were once babies in my tummy.  I didn't want to lie to them so we decided it was time to explain.  

The other thing that I became aware of over these past few months is that with all our doctor appointments because of Jonah's kidney issue, I quite often have to refer to him being adopted during the medical history part of the exam.  Jonah listens to EVERYTHING that is said so he was hearing this reference about adoption.  It wasn't fair of us to be telling strangers about them without them knowing what adoption meant.

So I made a social story book about their stories.  We even included photos of their birth parents.  We prayed over the book and over our boys before presenting it to them.  

As I read the book, Jonah only focused on Ben's story.  Ben kept focusing on my tummy and saying "Me baby."  Very interesting.  Then for the next hour after reading the book, both boys were VERY naughty.  I think they were processing what they had heard.

A few days later, Jonah wanted to show the book to Stephen over FaceTime.  He seemed very comfortable and proud of it.  Ben is not interested in it anymore.

Of course, I do recognize that some of the behavior I described above in Ben's section may also be a reaction to us telling him his adoption story.  Jonah's more intense affection I described above in his section may also be a reaction to his adoption.  When you have kiddos that can't completely express/communicate their thoughts/feelings, it's a guessing game to figure out what is reaction to what.  We do the best we can.  

That is all we are going to do with them for now.  They know where the book is if they want to look at it again.  We will continue to remind them how much we love them and that we are their family forever.

Did we open a can of worms that didn't need to opened?  I don't know, but it seemed like telling the truth was the best answer so that's what we did.

(a very unscientific) PERSONALITY QUIZ

 

MOVIE CHARACTERS THE BOYS LOVE:

MOVIE: ALADDIN

Ben: Jafar   

Jonah: Genie, Aladdin, or Abu

MOVIE: MUPPET MOVIE

Ben: Animal

Jonah: Scooter, Walter, or Fozzie

MOVIE: LION KING

Ben: Scar

Jonah: Simba or "Hakuna Matata" characters- "No worries"

MOVIE: SLEEPING BEAUTY

BEN: Malificent

JONAH: 3 Fairies or Prince

MOVIE: SNOW WHITE

BEN: Mean queen

JONAH: Dwarfs or Prince

MOVIE: BEAUTY & THE BEAST

BEN: Gaston or the Beast when he's mean

Jonah: Chip

I could continue with more movies, but I'm thinking you are seeing the same pattern I am seeing.

Pretty revealing.

Should I be concerned that Ben always identifies with the bad guy?  

Or since I have enough to worry about in life, I'm just going to frame these results as Ben will be the fierce protector of the more innocent and naive Jonah.  

The perfect pair.  

They are each other's ying and yang.

IT’S STILL THERE

Ben came home to us in July 2016, so it's been a little over 4 years that he's been with us.

He has made amazing progress emotionally, socially, behavior-wise and with his English vocabulary.   I am so impressed and proud of this little boy who has faced so many challenges since the day he was born.

However, every once in a while, I get a glimpse into how much of his past life is still "there".  Things he is still processing, things he is still trying to get over, and things he still thinks will happen to him even though he is in a family now and not an orphanage.

Yesterday provided one of those moments.

When we were done with afternoon school time with me, the boys had room time.  

NOTE: Room time is not a bad thing.  Each of their bedrooms has a wide assortment of toys and books.  The boys can choose if they want to play or rest for bit.  Room time is a chance for all of us to get a break from each other ☺

Usually before room time, I have both of them use the bathroom.  For whatever reason yesterday, I asked Ben if he had to go, he said no, and I didn't pursue it.  My mistake.

While they were up in their rooms, I had to make some phone calls.

As I was in the middle of an important phone call scheduling one of the zillions of medical appointments it feels like, I heard Ben crying.  When I got off the phone I ran upstairs to find him hunched over on his bed, holding his pants, sobbing.  When I came in the room, he immediately quivered and said "I sorry Mama, I so sorry."  

Now let me tell you something about Ben.  For the most part, remorse and regret are not real big emotions for Ben.  If he misbehaves, it usually takes us explaining that what he did was wrong and then making him sit in time out so he can really think about what he did.  Then we really have to coax him to say sorry for what he did.  It has gotten better over the years, but saying sorry is very difficult and something Ben really resists doing.

So for Ben to have this immediate reaction when I walked into his room is very unusual.  

Let me also note that bathroom issues have never been something that we have gotten upset with Ben about.  Mainly, because he rarely has accidents, and also because we can tell this is an area that Ben has extreme fear of punishment about.

I don't know what happened to him in that orphanage when he had bathroom accidents, but it must have been quite severe for him to still react in great fear after 4 years.

Yesterday, I rushed him to the bathroom and then reassured him I was not mad at him, and it wasn't his fault- I should have remembered to make him go before room time.  I kept telling him how much I loved him, and that it was ok.  No big deal.  

It actually ended up being a good bonding moment for Ben and I- another brick being layed on our wall of trust, I guess.  

But it still breaks my heart  that even after all this time with us, there is still a small part of Ben that doesn't trust us completely.  He still reacts out of fear that stems from 6 years of being a bothersome kid in an orphanage instead of loved and valuable member of a family.

Oh Ben, there is so much going on in that little head of yours.  When you present angry, forceful, and aggressive, you are probably really activating the survival skills that kept you safe for your first 6 years of life. You have come a long way in trusting us, but there is still a long way to go.  Our family with you in it is still a work in progress.  Marathon not a sprint, right?  

We love you Ben.  We always will no matter what you throw at us.  I hope someday this will be your gut reaction to a scary situation instead of fear and trembling.

Now on a lighter note, here the boys are setting up for a game of chess...who knows, this might end up being their game...

And Engineer Jonah constructed quite the tower this morning while I was getting ready.  I'm quite impressed with his symmetry and balancing work.

 

SAFER AT HOME OBSERVATIONS

Our county, as of yesterday, has started Phase One of  reopening.  This means that businesses can start reopening, but social distancing, masks, and gatherings under 10 people are recommended.  Vulnerable population should still remain home.

Kind of feels like a change, but kind of doesn't.  Especially when we have two boys with special needs.  

Even though statistics show that most children show mild symptoms of COVID-19, Down syndrome often tends to be a variable that often no one can calculate or completely understand.  Even our pediatrician has shared that DS doesn't always follow the book of how things "should" go.  

This is especially true of our Jonah.  He can go from bad to worse very quickly and often without explanation.  We have seen it with kidney infections, pneumonia, strep throat, ear infections, and last year after his surgery with breathing difficulties.  

So I do consider Jonah to be part of the vulnerable population. 

The other added complication for us is our boys, especially Jonah, do not understand personal space.  We work very hard to help them respect people's space, but they are often random and unpredictable about when they are going to "invade"- a hug, a kiss, an in-your-face greeting, a surface lick...I think you get the picture.  

How in the world do I take these two boys out in public and expect to keep them 6 feet away from people?  I definitely would have to hold their hands at all times, but that would get met by great resistance at some point.  And with two of them, the logistics of holding on to both is just hard for me.  This is why I think it might be easier for us to just stay home with them as much as possible even though things are starting to open up.  

Home isn't a bad place- the boys have lots of fun things to play and do.  And they have each other so they aren't without friendship.  But it is hard when they see neighbor kids playing outside and want to join in the fun.  

We experienced that this week.  Jonah was sobbing in tears, yelling in anger, and then just threw himself on the sofa in dismay after we brought him inside because we didn't want him running over to the neighbors to play bubbles.  

I know this sounds mean of us, but as I explained above, Jonah's behavior is too variable.  Jonah can hardly control himself around babies so I was worried he would go right in for a hug/kiss of the little baby.  

And it's not that I am just worried about him contracting something, there is also the concern he could pass something on to someone else.  Even though the boys are staying home, the rest of us are interacting with the outside world, so there is always the possibility we could bring something home.

Just difficult and weird social situations that I am not quite sure how to handle.  On one hand, I feel bad "squelching" the socialness of our boys- especially Jonah.  He loves interacting with people!  I felt so bad when I watched him collapse on the sofa, just sad and frustrated with life at the moment.  

And the other added element is even though we try to explain to the boys that too many people are sick right now so that is why we are staying home, do they really completely understand or do they just think we are being mean?

Just some observations from a special needs perspective about safer at home.  

Yes, we have so much to be thankful for despite the difficult situation our world is facing- we and our loved ones are safe and healthy, Andrew is keeping busy at work, and we are having some great and precious family time- so many blessings.  

So I am not trying to say things are bad for us- just sometimes my heart hurts for our two boys who are living in a world they don't always understand.  And being their mom, I feel responsible for helping them with the frustration that may cause them- but sometimes, I just don't know how to help...

Personal space teaching- oh how we are trying :)

  

HOME SWEET HOME

When you have a problem with this:

PERSONAL SPACE

Then this is rather difficult to handle also:

SOCIAL DISTANCING

So that is why we are going to stay home with our two littles as much as possible.


For their safety and well-being and everyone else's too.

Oh and Father forgive me for I have sinned- I hoarded :)

That’s a freakishly large container of creamer.  I just had to know I wouldn’t run out!

BREAD ON A BABY'S HEAD: THIS IS WHY IT'S SO INTERESTING!

   

Quite a attention-grabbing title, right?

My sister took the boys to the children's museum this past Friday.  She was very impressed with how well-behaved and appropriate the boys were during their time at the museum.  She feels like they are maturing!  What great feedback to hear!

However, there was one incident.  Jonah wandered off into an area where a mom was taking care of her baby.  My sister went to get him and apologized to the woman if Jonah was bothering her.  The woman said he was fine except he had put a play loaf of bread on her baby's head.

That really summarizes why life with these two characters is so interesting.  I can teach them appropriate behavior, I can prepare them for situations and how they need to behave in that situation.  I use social stories, cue cards, behavior charts, and bribes- you name it, I have probably tried to use it as a way to help the boys with their behavior.  And as my sister recognized, the boys do have pretty good behavior most the time.  

But it's these unexpected out-of-the-blue actions that there is no way to plan for or prepare for- why would Jonah think to put a loaf of bread on a baby's head?  Is this even a "rule" one would ever think of having to make?  Do we all have urges to put bread on people's head but just have the social filter to know that's not appropriate?  I don't know...it's never been a thought that has popped into my head!

I think it's hilarious actually.  Life with these boys is a hoot.  Just when I think I have them figured out, haha- they throw me a curve ball and give me a new challenge to think about.  

Since I like a life filled with laughter, I guess this is the best life for me.  Thank you Lord!

And now some photos of our funny boys:

At the museum, in the dress up area.  

At the museum, in the schoolroom area.  

Guess who assumed the role of teacher?  

Our little authoritarian...Ben. 

 Boys got to go ice-fishing and snowmobiling this weekend.  

This is what happens lately when we ask them to look at the camera for a photo!

Trying to catch us some supper :)

ONE THING LEADS TO ANOTHER!

This happened last night.  

Jonah just finished a 20 day 

course of antibiotics- need I say more :(

Then this happened.  

Andrew is gone for four days 

snowmobiling up north, need I say more...

So then this happened.  

Not my finest moment, I admit...

So what I realized during my post-toilet disaster/blowup analysis is that when things are firing here on all pistons, the boys and I work pretty great together.  Where we have problems is when something unexpected happens, and that's when we have a breakdown of our pretty-easy-flowing dynamics.  

Now as tempting as it is to blame these breakdowns on the boys, I came to understand last night that I expect them to act differently in a time of "crisis" than I do during normal times.  However, I haven't taught them the skill to make that adaptation.  

When things are going smoothly around the house, I am able to be at pretty high alert level and be on watch to guide and direct their behavior so it doesn't go off the rails.  But when something like a toilet clogging happens and I get distracted busy dealing with the crisis, then I can't guide and direct the boys like I usually do.  Their behavior is still the same as during non-crisis, it's just they don't have me around to keep them in their "good behavior" boxes.  

So I think what I need to work on is a crisis strategy for them.  When my attention has to go to clogged toilets, broken dishes, dog getting sick etc, I need to let them know they need to go to a spot and just sit and wait for me as I deal with the mess.  Perhaps they can grab books and read, but what is most important is they need to stay out of my hair for a bit and out of trouble for a bit.  The TV can be a good babysitter during household crisis times, but like last night, I couldn't leave our bathroom "waterfall" to even get to the TV to plug the boys in.  So instead I was trying to clean up this awful mess with the 2 of them stepping and touching stuff that they should not have been in the vicinity of-hence the 3rd image of me screaming like a madwoman.  

So we will work on some crisis strategies for the next time Mount St. Toilet erupts in our home or some other such similar disaster.  Because it isn't a matter of IF it happens again, just when it will happen again.  Next time we will be armed and ready!

Update to last night:  The amazing thing about the boys is this morning, they don't wake up holding a grudge at their crabby mother who put them to bed quite abruptly last night.  They wake up ready to hug and cuddle and tell me they love me despite the fact I wasn't very nice to them last night.  What an amazing lesson to me about unconditional love and forgiveness.  I tell you pure hearts are these boys' greatest gifts to this world!

TAKING THE TIME TO "LISTEN"

Below is a video of what I found Jonah doing this morning after breakfast.  

One of the skills we have to have in communicating with Jonah is we constantly have to trace back to what we have been talking about.  Chances are something that Jonah heard us say caused him to think about something else, and that something else (or it may be a 2nd or 3rd leap of thought) is what he is currently trying to communicate to us.  

So at breakfast, Jonah and I were "talking" about the Grinch movie.  We finished breakfast, and I was cleaning things up.  Jonah started creating a scene in the living room by our tree.  Then I heard him singing.  When I went over to ask him what he was doing, he said something, but sadly I couldn't understand what he was saying (often our dilemma as Jonah gets more creative).  However, Jonah is getting more resourceful/determined so he proceeded to hunt down the Grinch DVD and excitedly pointed to it.  Then the light bulb went on for me.  

This is what Jonah acted out this morning:

This is the scene from the Grinch movie he was trying to recreate:

With Jonah, it always makes sense once you take the time to understand his context.  

The biggest mistakes one can make when interacting with a nonverbal person is assuming because he can't talk that he doesn't have anything to say.  From experience, we are realizing Jonah has some amazing stories to tell...if we take the time and effort to "listen".

  

IMPLEMENTING WHAT WE LEARNED

In the previous post, I discussed some things I learned at a recent seminar I attended about "Sexuality and Preventing Sexual Abuse for Individuals with Down syndrome."

I decided we needed to come up with some guidelines regarding appropriate affection to start teaching our boys now before they hit puberty.  

A hug from one of our cute little boys who both look age five (even though they are actually 9) is still probably appropriate.  

But it will not be appropriate when our boys start to turn into young men.  Then an unwelcomed hug/kiss could make someone feel very uncomfortable, and even cause our boys to get into trouble.  I do not want this for our boys ever!

Also, the boys need to start understanding what are appropriate shows of affection so that they are not taken advantage of by someone who intends to hurt or abuse them.  Again, I do not want this for our boys ever!

I think the challenge of this, especially in the school setting, will be to get everyone on board and be consistent.  

I feel bad because this is another "thing" I am asking school to help with for our boys (they do sooo already), but I have to remember the boys' safety and well-being has to be my primary concern.  Hopefully, I can convey my appreciation to the school for helping us in this area along with the importance of these guidelines for our boys.

Please remember people with intellectual disabilities are sexually assaulted SEVEN times the rate of people without disabilities.  That is why I feel we MUST address these issues to keep the boys safe!

To start with, here is an incredible video that I think is a great resource for the grown ups in the boys lives as well as the boys themselves:

Click HERE for "Appropriate Touch" Video 

Second, here are the affection guidelines that we feel comfortable for family, friends, acquaintances, and strangers.  

Click HERE for Appropriate Affection Guidelines for Individuals with Down Syndrome

Here are some other resources that I might use as we go over these guidelines:

Songs:
1. "Personal Space" song
2. "Family Members" song
3. "Friends" song
4. "Good Manners" song

Books:
1. Mommy Hugs book
2. Daddy Hugs book
3. Best Friends book
4. Suppose You Meet a Dinosaur: First Book of Manners book

Worksheets:
1. "Personal Space Camp" cut and paste
2. Understanding Love-Like-Polite

HARD TO HEAR BUT...

This weekend I attended a seminar put on by the Down Syndrome of WI and the Down Syndrome Clinic of Children's Hospital.  They do a seminar usually in the fall and spring, and all of the ones I have attended have been excellent.  Topics over the years have been potty training, behaviorial/ compliance issues, IEP issues etc.  

I am very thankful these resources are available to us.

The topic for this past weekend was one I have been avoiding and in denial over for the past few years: Sexuality and Prevention of Sexual Abuse.  

It is very scary to think about the challenges our boys might face going through puberty and then as adults.  Now they are cute little boys who act like little boys.  As with my 3 older typical kids, it's hard to think of them growing up and not being as easy to relate to and watch over.  You know the old saying: "Little kids, little problems.  Big kids, big problems."  Plus the special needs aspect just adds a whole new layer we didn't deal with for our older kids.

So I put on my brave face and attended the seminar this weekend. It was excellent and gave me much to think about.  Some of it was hard to hear but was still very valuable information.

Here are some of the main points:

1. Two common myths that surround people with Down syndrome that cause the area of sexuality to be sometimes difficult and tense to deal with.

a. MYTH #1 People with Down syndrome are asexual.  Sexuality is not an area of life that they will ever have to deal with.  Believing this myth means people with Down syndrome don't get access to good information and support to help them navigate through the minefield of emotions and feelings they have.  It also sets them up to be vulnerable to abuse because they may not know what is safe and acceptable behavior.

b. MYTH #2 People with Down syndrome are "oversexual", thus causing problems and concerns.  Believing this myth puts people with Down syndrome at risk for having their behaviors misinterpreted when it may just be an innocent behavior with no bad intent behind it.  And there is also the risk of them not getting good information and support to help them navigate and learn appropriateness in this area.

2. Sexuality feelings and bodily changes often follow chronological age, not developmental age.  This means people with Down syndrome might start puberty way before they have the ability to understand the changes that are happening to them.  This makes education in this area a challenge and one that will require lots of adaption to make it something they can understand.

3. People with intellectual disabilities are sexually assaulted SEVEN times the rate of people without disabilities.  This is scary!  Here are some reasons people with special needs are so vulnerable to sexual abuse:
a. Isolation and deprivation of attention and affection- not a lot of friends.  Any attention is better than no attention.
b. Lack of  Education:Not aware of rights, Not educated about abuse, Not educated about their body, boundaries, healthy relationships etc.
c. Dependent on Others- they need people in their lives to help them function.  What if a bad person tries to act like they are there to help them?
d. No Sense of Privacy because so many people have been involved in their lives in some very personal areas of life.  This sets them up to think anybody can be involved in private areas of their lives.
e. Learned compliance.  We work so hard to get our children with Down syndrome to listen and obey.  The negative side of this is if they think they can/should trust and listen to anybody.
f. Lack of control of life choices.  People with Down syndrome are use to having decisions made for them.  This leaves them vulnerable to letting someone else control this area of life too.
g. Everybody is a friend.  People with Down syndrome may lack an understanding of different levels of relationship with people.  Everyone is "love" worthy which sets them up to be fooled into being loved when it could really be abuse.

So given this information, what were my take-aways from the seminar?

1. We need to start educating the boys about body parts, privacy, and safety.

2. We need to educate them that only certain people are allowed to be involved with them in a personal way for hygiene reasons and health care reasons. 

3. Keep that hygiene/health care circle of access as small as possible as much as you can.  This means as few people as possible being involved in private personal care.

4. We need to start more private personal care in the home: closing doors, etc.

5. We need to identify what types of affection for what levels of relationship are appropriate for our boys. This means figuring out who gets hugs, who gets a kiss, who should be side-hugged vs. frontal hug. Who should be a high-five or wave.  This might not be needed for them at age 9 yet because again, they are sweet little boys, but down the road, a hug or kiss from a 15 year old pubescent boy might not be a very good choice.

6. We need to be aware that the downside of constant demand for compliance is our child might think its ok to obey any adult or feel like he doesn't have the power or control to say "No" to a dangerous situation.  

Lots of good information although a bit scary to think about.  

This information was provided by Terri Couwenhoven, Milwaukee, WI, MS, CSE and Pam Malin, Green Bay WI, disability consultant. 

Sexuality and Prevention of Abuse Seminar Information