DownSyn Forum

Beck and Kate

Alright, let me preface this with an apology if this subject offends anyone. I just genuinely need help with this problem.

I am new to this forum and this problem is what compelled me to search for a place wher I might find parents facing similar challenges.

My little sister has down syndrome and I am in the process of adopting her. Our mother died last year of breast cancer and I inherited Becka. I have a fair amount of experience with children with disabilities, it is sort of the family business. My mother worked with developmentally disabled kids and teens and my older sister and I have both done the same, although I stopped and went back to school. Regardless of this, however, I have come to a point in my parenting of Becks that I don't know how to handle.

She is almost twelve and hormones are rearing their ugly head. We have been dealing with mood swings and crushes galore. The problem is though, the other day I caught her ... feeling herself. I don't know what to do. I know that this normal. I had teenage students that I would catch doing this all the time. The problem is just that 11 seems awfully young. Am I wrong?

_________________
Nora Charles: Waiter, will you serve the nuts? I mean, will you serve the guests the nuts?

Check out Becka, the coolest kid I know HERE

Tom · Posted: January 27 2010, 7:49 PM Post subject:

Yes, you are wrong. I don't want to name names or anything but I happen to know a particular girl who was doing that when she was even younger. Shocked

Let's face it... if it feels good she is going to try it. You need to teach her to do that in an appropriate environment in private.

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

Beck and Kate · Posted: January 27 2010, 8:02 PM Post subject: Thanks for the response.

I know I am wrong but it is still hard to discern.

My boyfriend has been around for her whole life and has basically been her father, mom was sick for a long time so Frank and I have been her parents for longer than the year we have had legal guardianship, and he thinks it is too soon. He says that he didn't start that until he was thirteen. I have a feeling that this may be a little more about him not wanting her to grow up than his actual opinion. But he was irritated that I didn't tell her not to do it and that it is bad.

I don't want her to grow up repressed and thinking that her natural instincts make her bad. But I understand his reaction. I am also concerned about cleanliness. She doesn't remember to wash her hands after dinner or the restroom so how can I help her remember to clean up after this without overstepping personal space?

_________________
Nora Charles: Waiter, will you serve the nuts? I mean, will you serve the guests the nuts?

Check out Becka, the coolest kid I know HERE

mary c · Posted: January 27 2010, 9:14 PM Post subject:

I think it's totally normal. I think you should just tell her that it's something private--that it's not ok to do around other people as it will make them uncomfortable. Be matter of fact with her and tell her that she needs to clean up afterwards.

_________________
Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

Please support the Down Syndrome Research and Treatment Foundation http://i139.photobucket.com/albums/q284/maryc_010/a13-1.jpg[/img]

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EAS1971 · Posted: January 27 2010, 9:18 PM Post subject:

She is most definitely not too young! She is the perfect age for that, and she is doing something completely and totally normal. It's nothing to be embarrassed about. It's normal and natural and healthy. You just need to teach her that you don't do it in public. She should go to her room, and close the door. Or go to the bathroom and lock the door. And just teach her that any time she has done anything down there...gone to the bathroom or scratched or whatever...she needs to wash her hands. Maybe teach her that the shower is the right place to experiment.

I suspect this is more about your boyfriend being uncomfortable with the situation than it is with your sister doing anything wrong. It's okay for him to be uncomfortable with that. That, too, is totally natural!!!! But he doesn't have to be "aware" of what's happening. She IS going to continue...just like we ALL have. It's normal and it's okay.

_________________
--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

burnsun · Posted: January 27 2010, 9:37 PM Post subject:

Very normal and the newer book about ds and sexuality and boundries has a lot of insightful information. Also about dealing with other womens issues and hormones and "stuff"

her teachers may also other resources too

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Beck and Kate · Posted: January 27 2010, 10:36 PM Post subject:

Yeah, I definitely need literature on these issues. I asked her teacher for info on puberty issues a couple of months ago and what she gave me was useless. It looked like the average handout given to every girl in junior high. I live in books and with all of my searching I can't find any useful help on the subject. I am having a hard time figuring out how to have these talks without just confusing her further. I mean how do you explain periods!?! It was horrifying enough for me at that age, and I didn't have the comprehension issues that she faces. Wow a boy would be so much easier!

_________________
Nora Charles: Waiter, will you serve the nuts? I mean, will you serve the guests the nuts?

Check out Becka, the coolest kid I know HERE

burnsun · Posted: January 28 2010, 10:07 AM Post subject:

http://www.amazon.com/Teaching-Children-Syndrome-Boundaries-Sexuality/dp/189062733X/ref=sr_1_1?ie=UTF8&s=books&qid=1264690643&sr=8-1

Parents of children with Down syndrome and other intellectual disabilities are accustomed to paying close attention to their child's physical, cognitive, and emotional development. This proactive approach should also include their child's sexual development, which for many parents may not seem as obvious or urgent, especially to those with young children.

Drawing on her unique background as both a sexual educator and mother of a child with Down syndrome, the author blends factual information and practical ideas for teaching children with Down syndrome about their bodies, puberty, and sexuality. This book gives parents the confidence to speak comfortably about these sometimes difficult subjects.

In an easy-to-read, non-clinical style, the book covers relevant issues and concerns for children of all ages, such as:
Labeling & explaining private body parts;

Identifying & expressing emotions;

Respecting personal space;

Teaching self-care & hygiene;

Understanding norms of privacy;

Understanding gender identity;

Showing appropriate levels of affection.

It also covers later issues that affect teenagers and young adults, including:
Anticipating and understanding puberty;

Dealing with periods, bras for girls;

Experiencing erections, wet dreams for boys;

Relating to the opposite sex;

Sharing parental values about sexuality;

Explaining sexual relationships;

Preventing sexual abuse;

Understanding how Down syndrome affects puberty & fertility rates.

Each chapter highlights important points with key messages, teaching activities, parental pauses, and anecdotes, all of which prompt readers to stop and consider concepts or values associated with a particular topic. The final chapter covers the special concerns of parents who are now teaching teenaged or adult children about sexuality for the first time. It concludes with extensive appendices containing invaluable teaching materials and illustrations of body parts and functions.

It is a great book and it is likely time to discuss birth control options (usually used to regulate when a girl will get her cycle)......so you can be ready. I know that I plan on using a continuous pill and having the girls cycle when they are off school..... on christmas vaction and spring break and such....... limiting it to four a year...... this is what my doctor recommends or a mini pill...... which eventually only leads to a very light 3 day cycle...... so we know when it will happen and that we need extra bathroom supervision! It will depend a lot on what my girls are ready for as we get closer to that time.

But this is between you, her doctor and her.......

We do a lot of comments........ like you may do that but in your room or the bathroom or the shower....... it is consitency and is showing improvement with my older boy (but my boys are all attached to their penis' .....especially my typical 3 yo!!!!!!!!!!!!!! )

We also have talked about privates and proper names of body parts since they were little .....COlin signs penis all the time........ Some days I am happy that the typical kids in class were not taught that sign,,,,,, or I would be in trouble with all the other moms!!!!!!!!

Good luck and this is a very helpful book!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Beck and Kate · Posted: January 28 2010, 11:45 AM Post subject:

That was immensely helpful! Thank you so much. I have been looking for a book like that for a very long time.

_________________
Nora Charles: Waiter, will you serve the nuts? I mean, will you serve the guests the nuts?

Check out Becka, the coolest kid I know HERE

lespring · Posted: January 30 2010, 7:29 PM Post subject:

I'm jumping in too with "not too young at all!" My daughter Angela is 13. We've been dealing with similar issues for SEVERAL years. Drives me crazy, really. We just remind her that "that's something you do in private". I'm glad to know she hasn't had a problem with this at school, and is saving it for at home. At least we're getting somewhere! LOL

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Beck and Kate · Posted: February 01 2010, 12:48 PM Post subject:

You guys have no idea how much of a relief it is to be able to talk to people about these things.
I am only 25, and although I have had tons of experience with teens with down syndrome at work, it is a completely different thing when it is your child.
And although I have basically raised her since her initial adoption, our mom was always the final word, regardless, so this total control and responsibility over her well being is new.
I can't discuss this with my friends (even the not-so-personal stuff) because they have never understood what draws me to my lifestyle. All they see are difficult (and sometimes dangerous) teens that are hard to understand. They don't see all the things that make these kids extraordinary. So, thank you for the much needed help and understanding. Cheezy, I know but I needed to tell you.

_________________
Nora Charles: Waiter, will you serve the nuts? I mean, will you serve the guests the nuts?

Check out Becka, the coolest kid I know HERE

Tom · Posted: February 01 2010, 12:59 PM Post subject:

I just have to add about your signature... I LOVE "The Thin Man". It is a great movie!

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

Beck and Kate · Posted: February 01 2010, 1:29 PM Post subject:

I have an unruly obsession with those films. Those and any other films and radio dramas of that era. Cool to meet a fellow Nick and Nora nut.

_________________
Nora Charles: Waiter, will you serve the nuts? I mean, will you serve the guests the nuts?

Check out Becka, the coolest kid I know HERE

Beck and Kate · Posted: February 01 2010, 1:37 PM Post subject:

And also, since you started it, I am loving on your Zim avatar. I have all of the episodes on dvd. Have you read JTHM? A bit edgier though, it's what initially got me into Jhonen Vasquez. ::tangent::

_________________
Nora Charles: Waiter, will you serve the nuts? I mean, will you serve the guests the nuts?

Check out Becka, the coolest kid I know HERE

Tom · Posted: February 01 2010, 1:41 PM Post subject:

My daughter and I are both big Nick and Nora fans.

My wife and Beth are the big JTHM fans. We (including Mikey) are all big Invader Zim fans.

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

Beck and Kate · Posted: February 01 2010, 1:48 PM Post subject:

Yeah, Becka has kittens whenever Gaz comes on screen.
My boyfriend Frank and I love The Thin Man and JTHM and we argue constantly over who would obtain ownership of the dvds and comics if we should split.
I, of course, always win.

_________________
Nora Charles: Waiter, will you serve the nuts? I mean, will you serve the guests the nuts?

Check out Becka, the coolest kid I know HERE

Steffi · Posted: February 13 2010, 8:39 AM Post subject:

I'm thinking I should have read all the other posts before posting my own today . . . .I think their's something in the water these days all our kids seem to have started doing this at once . . . . wish I could be of help, but other then telling u it's perfectly normal ( I know of a few girls who started discovering themselves closer to 6 or 7 ) I think the concern more over lately in all the posts I've read is why are our children starting puberty at such a younge age compaired to us . . . I still say something in the water . . or the foods we feed them, I dunno . . .special needs and normaly developded kids alike . . . my step daughter starter her period at age 10 . . .this freaked me cause I was 13, and how in the world are we suppose to explain to our "babies" what's happening to them when they are still only at 3-5 year old developmental levels and bairly talking much less compreheading . . .sighhhh

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lespring · Posted: February 13 2010, 9:05 AM Post subject:

I think most of us don't remember our very first stages that freaked our parents out as much as we are about our kids! I REMEMBER overhearing my mom make a comment to my dad when I started developing on top. I was 10 (breasts come last for girls.). I remember being at a swimming party at about the same time, and being embarrassed to change into my swimming suit because I was getting hair.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Beck and Kate · Posted: February 13 2010, 7:57 PM Post subject:

Thanks Jane! I got the book in the mail a couple of days ago and it could not be more awesome! I appreciate the suggestion so much. This should help loads.

_________________
Nora Charles: Waiter, will you serve the nuts? I mean, will you serve the guests the nuts?

Check out Becka, the coolest kid I know HERE

burnsun · Posted: February 13 2010, 8:24 PM Post subject:

Glad it got there and I was just about to post the link for Stephi! I love the book..... Iplan to gen another copy for school #2 to share with their parents as I gave one to school #1

Glad you like it!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

sandsmom · Posted: November 03 2010, 8:56 AM Post subject:

ok I know this post was months ago but i havent been to downsyn in quite a while.

Sydnie is 10 and notice that she will have her hand down her pants while she sleeps....and of course this freaks me out. I just slip her hand out or if she is waking up ....Ive sort of said with a wrinkled nose lets not do that. That was the best I could come up with cause I didnt want to yell at her not to do it .....but lets not do it!!!! lol

Im also a littled wigged about the thought of her period...we of course havent talked about it as I have an IUD and dont have a period so she isnt exposed to it at all! My best friends daughter(her and syd have been bffs since they were little) is 9 and doesnt know anything about any of it. Her mom hasnt spoke a word...if it were me...I might would let them in the bathroom discreetly just so my girls are used to seeing pads etc.....but I dread having to go thru all that with Sydnie...Im hoping I have a couple of years. However one of the girls on our cheer team is a pretty big 10 yr old with Autism that has her period, hair the whole 9....again how about no!!!

_________________
Angie
Mom to Sydnie (5/26/00) and Saylor (4/30/04)

"May God Bless You As He Has Us"

An extra little chromosome,
that’s all it is, you see.
Where all of you were born with two,
I was blessed with three

"My Children are God's gift to me.
How I raise them, is my gift to God."

sandsmom · Posted: November 03 2010, 9:04 AM Post subject:

Okkkkk I always thought and heard this book was great....just looked at the inside of it and Im stressed!!!!! lol The pictures the explaining the thought of someone doing something to her or taking advantage of her makes my head spin!!! ok had to get that off my chest.

_________________
Angie
Mom to Sydnie (5/26/00) and Saylor (4/30/04)

"May God Bless You As He Has Us"

An extra little chromosome,
that’s all it is, you see.
Where all of you were born with two,
I was blessed with three

"My Children are God's gift to me.
How I raise them, is my gift to God."

Amy · Posted: November 04 2010, 11:21 PM Post subject:

Okay as the mom of 5 girls.. none with DS.. let me tell ya that this is not too young and very normal. However... has she been on antibiotics lately? She may have a yeast infection.. which would actually lead her to 'new behavior'. Just something you may want to bring up to her pediatrician. Also an exam by the ped would also tell you if she's close to puberty. Many girls are going through puberty at 5th grade. She seems right on schedule to me.

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

JanAndFamily · Posted: November 10 2010, 7:00 PM Post subject:

I just read this post, and while I don't really have any comments on what to do, couldn't help responding to the early puberty thing. People talk a lot about hormones in the meat nowadays as being partly responsible, but soy is also a factor. It has very high amounts of estrogen in it. Contrary to popular opinion, it has NOT traditionally been eaten in Asia for centuries except in fermented form (i.e. miso, soy sauce), which undoes a lot of the harm of it. Soy is found in nearly all processed foods in one form or another. I just read somewhere yesterday that a whopping 20% of calories in the average American diet come from soy because of how much it's used in processed foods. So I don't know if this will work or not, but avoiding processed foods (i.e. cooking from scratch) might help get puberty back to a more "normal" age, although you might need to start that from when they're small.

Jan

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wife and mother of Katherine (2004) and Christopher (Aug. 2007, DS)