When my Sweet Pea turns into a Snap-Dragon!

Thursday, April 7, 2016

The last three topics I had listed was:  isolation, extreme emotions, and violent outbursts.  These are pretty much all related.  Her extreme emotions turn into violent outbursts.  

Isolation:  Lily loves to be alone.  She always has.  I have always thought it was because she gets to over stimulated.  She will sit on her bed or at her desk and draw, color or write for hours.  She sets everything up how she likes to use it.  She has pens of all styles and colors.  She has her stacks of coloring books and pads of paper.  She knows where everything is at all times.  And she knows if it is touched!  I love that about her!  I also have the same quality.  The thing that often concerns me is she will talk and talk (not really understandable) to someone in her room.  She acts like they answer her and she will answer them back.  Full on conversations.  I will ask Lily to goto the store and she always says no.  I usually have to bribe her to leave the house.  To get lily to goto school is a fight most days.  We will have her pick out her clothes and line up each outfit for the week so she can see how many days she has.  And she will sometimes hide the clothes.  When she gets home from school she is always happy.  And tells me she had a good day.  Its just getting her out the door.  I wonder how her future will be.  Will this behavior continue?

Extreme Emotions and Violent Outbursts:  WOW!  When this happens it happens!  And usually out of the blue and it leaves her full of "I'm sorry's"  she gets very remorseful and almost were she wonders where did that come from!  She will come out of her room and look at me and turn around and run back to her room, in a storming off kinda way, and slam her door.  I will go to her room to see what is wrong and she has no words for me.  I can't figure out if she even knows whats wrong or if it is just she can't put it into words.  She won't let me touch her or hug her.  So, off I go.  Only for her to come back out a minute or two later and start crying for me to see and the minute I say, "Lily what is wrong"  she storms back to her room slamming the door.  This just continues over and over.  Than she just stops.  It really breaks my heart.  There are times I will go in her room and she will be sitting at her desk and I ask her to do something and she will turn and start kicking me.  Lily is a hefty girl so her legs coming at me hurts me bad.  and she will always snap right out of it and become very remorseful.   There are times when Lily will stand in front of me and just start crying big tears.  Like someone just stole her favorite pen.   If Lily could talk I think her mood swings wouldn't be so bad.

My DS Teenager is in LOVE

I was hoping I would never have to see Lily go madly in love!  I know she is a feeling, functional human being.  But how unfair to give a child's mind an adult emotion.  Lily has fallen in love 2x already!  Both times with a cartoon character.  Does she realize it is not a real human?  I don't think so.  And maybe we are encouraging her love by printing out pictures and teasing her about being in love.  Maybe it all would've passed quickly if we never acknowledged it.  

Her first love lasted 5 long months.  She would listen to songs and cry big crocodile tears.  She would draw pictures and letters to this love and want to mail them off.  She had pictures taped up to her walls that she drew.  She never stopped swooning.  And than one night she came out with her suitcase packed and told me she is leaving to live with him in the castle!  OH NO!  Thats when I knew this had gone to far!  I was so afraid she was going to leave in the middle of the night and get lost.  She had memorized her address in middle school but did she still remember it if that happened?  I know she knew how to pull the chair over to the door and unlock it.  I thought HELL my life is over!  I will have to sleep on the couch every night so I can guard the front door!  Lily refused to unpack her suitcase.  I would unpack it while she was at school and she would just repack it and try to hide it.  So I did the only thing that was left to do to persuade her never to leave the house alone.  I scared the heck out of her.  I made up a grand story of monsters who lived outside the door.  And if she left she would never see us again.  YES!  I AM A BAD MOTHER!  But I was so scared of her running away!  And I panicked!  So, Lily, being smart, thought, ok there are monsters outside the front door, so I will go thru my bedroom window.  And that is what I found her trying to do that night.  A pillow was under her covers to look like her laying in bed and her bedroom window open.  She hadn't made her escape yet!  But what if mothers intuition didn't kick in!  She would've went out her window.  And where the HELL did she learn to stuff her bed like she was laying in there!  All I could think of too scare her is "LiLy there are spiders outside your window!"  That was enough to keep her window closed.  She was in her room constantly talking to this character.  She cleared out a drawer and that is where he lived!  

That love faded out and was replaced by a new love, Kion from the Lion Guard.  And it was around her Birthday.  We got her some Kion things; a stuffed Kion, bedding and made her some lion guard tattoos.  So we fell into the love game again!  She goes around growling even more than she use too.  And she is now talking about having a Kion baby.  That really breaks my heart to think she thinks of that.  Will that ever be in her future?  That brings on all the fears I had when she was just born and I mourned all the things that she would never be able to experience.

I guess it is a hormonal drive in our genes that tell us to feel love.  To pursue love.  And it is that way no matter who you are.

I am gonna move this right into another topic since it goes hand in hand:  Self pleasure.  I can't say the "M" word.  It is just so in your face!  And I don't think I can take this much further than it happens!  Once the menstruation happened so did that drive for pleasure.  And it is extremely uncomfortable.   I am trying to teach other people in the house to knock on Lilys door.  Don't just walk in!  and laugh at her.  Give her some privacy.  And never LAUGH AT HER!

HYGIENE with a Down Syndrome Teenager

Showering:  To say Lily hates to shower is an understatement.  Since hitting puberty I don't get any help with Dad.  And he is the one who usually has taken care of making her do things she doesn't want to do.  For some reason I bring out the meanness in her!  Girls have so many crevices and since Lily wears a diaper at night, I think daily is important.  Sometimes, every other day, depending on her mood.  The only way to get her in the shower is for me to be in there with her.  I am not complaining because repetitive action is how she learns.  And I trust one day she will go in the shower by herself and be able to wash her hair and rinse it thoroughly.  And soap up her body and rinse.  The one thing I love about Lily is her need for ritual.  And her ritual gives me hope that she is learning.

Periods:  That is the time I feel she needs to really be supervised.  But a lot of times she will change her pad in her room without me knowing.  And does she wash her hands afterwards?  I hope so.  But truthfully I don't know.  What I do know is she hates the sight of blood.  So if she had gotten blood on her she would run to the sink.  Lily is an excellent hand washer.  Between school and home she has been taught to wash her hands a lot!  I stand back and watch her to make sure she does it.  And I am there to remind her if need be.  But usually I don't have too.  So the main issue with Hygiene and her periods is the fact she takes off her pads and leaves them in front of the toilet or on top of the trash for all to see.  She just isn't coordinated enough to even fold them in half.  And she is scared of them, so that doesn't help!  All I can do is keep trying to show her how.

BM'S:  No one ever wants to talk about this!  I don't want to talk about this.  But I can't be the only mom to a DS daughter who still can't wipe her own bottom!  We have tried to teach Lily to reach back and her arm is not long enough to reach.  So I wipe her bottom.  I debated if I should teach her back to front.  And will talk to her Dr about that.  I just want to keep her clean.


Lily getting her High School ID
My Little Freshman

Life with Lily is a daily struggle.  She is moody most the time.  And can be aggressive toward me.  I have felt to document the changes that were happening to Lily was invading her privacy.  Even though, I knew a lot of the things that were changing in her, would be of interest to other moms who search blogs for help with the same issues happening with their child.

Here are the changes that we have had to deal with since Lily was 12:

This is going to be very hard to write.  Some of the stuff is very personal.  I have wondered if they were normal behaviors with other DS children.  For some reason I thought Lilys body would always match her mental age.  Or maybe it is just my wishing and denial.  I searched for other Blogs about these touchy subjects and just couldn't find any.  I understand why.  It is private and feels embarrassing and exposing too much of the child.  But its real life and I want other moms to know it is normal.  And most these issues are normal behaviors you would experience with other children that aren't DS.

I will start with the unwanted puberty.  At 12, Lilys body started to change.  Hair in places, budding breasts, emotional (and I mean extreme crying out of no where), and than the periods.  These changes were all very upsetting to me!  It just wasn't fair that Lily who has the mind of a child would develop   a body of a grown up!  But it happened!  Her period freaked her out!  She cried and thought the blood meant something was very wrong.  We had to reassure her that this is what happens when your body changes into a woman.  I showed her books.  Her sisters showed her that it happens to them too.  But we just didn't know what Lily was really understanding or what she was really thinking.  Especially, since Lily is non-verbal.  She got the hang of changing the pad every couple of hours.  And 3 years later she still freaks out seeing the blood.  Its always like an "OH NO" moment.  And she still has not learned how to dispose of them correctly.  I have showed her over and over how to roll it up in the wrapper.  She just isn't coordinated enough.  I have tried pad bags and that didn't work.  She just doesn't want to deal with the pad any longer than she has too.  So that means I find them in her room, on the bathroom floor, and in the hamper still attached to her underwear. On the plus side, she is extremely good about washing her hands.

Another issue we had to deal with is at night.  Lily still needs to wear a "diaper"  to bed.  So do we put the pad in the diaper or just let the diaper do double duty.  Since there is no manual on how to handle such issues, we decided to try both ways to find what works.  We went with just the Depends and that really didn't work out.  So next, the double up.  We put a pad into the Depends  and that did somewhat better.  But still wasn't working out.  The best thing we have come up with is the maximum strength pee-pee pads inside a Depends.

And of course, we have tried the obvious, which is to get her to stay dry thru the night!  And at 15, we still have not accomplished that.  We don't let her drink after 6 and we make her go to the bathroom before sleep.  Some nights she stayed dry.  But most nights she did not.  So I stopped trying and just let her put the diaper on.  And wash her sheets daily.  And her mattress is covered in a vinyl cover.  Did I say yet that she likes to wear it.  I guess it is comfort to her.  And the fact that no one likes to sleep in a very wet bed.

I am going to address the other issues in another blog.  Because each change deserves their own blog!