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!

Been A While! Lily Is Now A Young Lady!

Monday, February 9, 2015

So much has changed since my last blog in May of 2013!  Lets start with some pics to see the difference:

 May 2013

On our way to Virginia Oct 2013
Mommy and Lily Richmond, VA. Oct 2013

We went to Richmond VA in OCTOBER of 2013 to do the ALS walk in honor of my Brother,  Lily's Uncle Vince, who was fighting ALS.
Lily with her Aunt Karen Oct 2013


Lily with her Uncle Vince.  This will be the last time we got to see him before he passed from ALS
Christmas 2013

Lilys Class Christmas 2013
Lily's class singing Christmas Carols at Celebration 2013
Lily at the Lab 2014
Lily with her dad 2014.  She looks so mature!

Lily getting her braces!  April 2014
Easter 2014

There was so much change going on.  Physical and Emotional.  In the middle of 2013 Lily started to Face Time with her friend from class.  It was wonderful!  They were on the phone from the time they got home till they went to bed.  They would play with the dollhouse and laugh and talk in there special language that only the two of them understood.  But we knew they understood each other cuz they would laugh so hard!  I thought it was wonderful.  Just like her having a friend over.  And than Lily started "caccooning", that's what I call what she was doing.  She stopped talking on the phone.  She was making stacks of books, papers, catalogs, boxes of pens, markers and pencils, all on the side of her bed.  She hardly had room left on the bed for her.  She also stacks one blanket on top of the other on her bed.  she has about 6 on there.  and she has a special order for them.  She doesn't sleep inside the sheets anymore.  It is always on top of the layers of blankets!  She would rearrange her things so the things of importance were near her head.  She would constantly lock her door and didn't want to leave her room.  She stopped wanting to go to school.  And yes, she had started her period!  

The changes were all heartbreaking to me.  I didn't know if she was suffering from depression.  Which is a great possibility, according to family history.  I didn't know if I should get her professional help.  Or just wait it out.  I knew if i took her to a professional they wouldn't be able to ask her questions because she can't really understand those kind of questions.  So they would automatically treat her for depression.  I really didn't want to go down the medication road.  

In the mean time she would find all kinds of excuses to stay home.  She would start with one body part and say it hurt and go on from there.  As funny as it was, it was also heartbreaking.  All I could imagine is someone is picking on her.  Her teachers and Aides kept telling me that wasn't the case.  So, it must be she just hates to leave the comfort of her bedroom.  Where she feels safe and were all her beloved things are neatly placed in places she knows. 

My last big issue with Lily is her attachment to nighttime diapers.  She still wets during the night even if I make her go before bed and no drinks after 7.  We have tried taking them away, "Cold Turkey" style.  But, she wants that Depends on and she will cry and cry!  I know it is she fears she will wet her pile of blankets on top of her bed!  She is about to turn 14 and I don't see her breaking away from it.  I really thought she would not want to wear them anymore by now.  and on her own doing!   There are nights she wakes up dry.  So, I am not concerned there is a medical problem.  Just an emotional one to her Depends.

Transitioning into a Young Lady

Wednesday, May 1, 2013

This is the stage in Lily's life that I never wanted to get too,  Puberty!  Her body is changing and so are her moods.  She has become boy crazy overnight!  She is constantly wearing a brides veil and telling me she is getting married to a little boy in her classroom.  I catch her playing with her stuffed animals like they are her boyfriend.  I cant find the right words to tell her about the way she is changing.  I don't want her to feel shameful or embarrassed about her changes. And truthfully, I don't know how much she can really understand.  She has showed off her body changes so proudly, and to everyone!   I know the start of her menstraul cycle is just around her next mood swing.  I always hoped this day would come after she has stopped wearing diapers to bed.  But she is not ready to stop wearing the diaper.   I got her a book about her changing body.  We started reading it together.  But there are things that can't be explained in a book.   How do I explain to her about her sexual urges in a way she can understand?

It seems like I just got use to one stage in her life, only to be pushed into the next.  She might be ready but I am not!

The Birth Story

Tuesday, April 16, 2013

There is no better story than the story of ones beginning.  This is Lily's story

34 weeks

 The big question is; did I know Lily had Down Syndrome?  Did her Drs know?  Technically, there was no certainty.  But, mentally I had a feeling.  And there is no better test out there than a mothers intuition!  Lily was born at 38 weeks pregnancy by C-section.  The C-section was planned after a stress tests was done and there was a fetal heart rate drop.  Previous to the stress test we had had numerous Non Stress tests that showed little reaction with her movement.  In my heart I felt like maybe something was different with her.  I kept hearing a voice telling me she had Down Syndrome.  And I had heard this voice since the beginning of my pregnancy.

during a Non Stress Test

I will start in the beginning of my pregnancy.  It was not a planned pregnancy.  I had just had some major life changes and the last thing I needed was another child.  But she became a wanted blessing.  At 8 weeks, we heard her heartbeat and seen her in a sonogram.  The Dr told me at that appointment  that at my age (34) he would recommended a amniocentesis.  That was scheduled for my 16th week of pregnancy.  In the meantime, my pregnancy became very real.  I had found out the sex in another sonogram.  I felt my little girl moving in me. And I had already popped out!  So when the time came for the amniocentesis I was getting cold feet.  I had had a dream the previous night that I had the test and had to go to work and I was so busy at work I couldn't even sit down and I started to miscarry.  To me it was a premonition of what would happen if I took the test.  As I was laying on the table before the test I told her I couldn't  go thru with it.  It didn't matter if she had Down Syndrome or anything for that matter, because I had already felt her move and I was inlove with her.  I could not even conceive to have an abortion.  And that is what the test is all about, ABORTION,  If there was abnormalities.  At 16 weeks she was so alive in my heart and in my body that there was no way that an abortion could ever be an option.   Instead of getting the amniocentesis they gave me an ultrasound and during the ultrasound they said her neck was measuring wide which is a sign of Down Syndrome.  It was not an accurate test but they wanted us to know.  They also had us talk to a geneticist.  All I can remember from that whole ordeal was being there for hours being asked 1000 questions each and being told the same thing.  There was a chance she had Down Syndrome.  I wish I could remember the percentage rate they gave us.  But after hours of being there and all the information that was spewed at us I don't remember anything!

The thought of her having Down Syndrome never left my consciousness.  The next test was the quad blood work test.  And that came back negative.  So we were only left with the neck measurement pointing to Down Syndrome and......... my gut feeling.

My pregnancy was different in a way I can only explain as she hardly ever kicked hard and wasn't as active as my other 4 children were.  And at 34 weeks they started giving me NST and each time there was never reactions to her movement.  Meaning her heart rate never rose with her movements and stimulation from the buzzer never phased her.  And after each test I wondered if her non reaction was because she might have Down Syndrome.

When Lily came into this world she didn't cry right away.  I remember them trying and trying to get her to cry and she just didn't want to.  She was breathing, just not crying.  They wrapped her up and put her on my chest.  I looked at her and was relieved because she looked perfect.  There was no sign of Down Syndrome or anything else.  After a minute on my chest they took her away to clean her up dad followed but was told to stay out of the room while they tested her.  The next thing I can remember was being woken up in a room and being told that they were pretty sure Lily had Down Syndrome and she was not able to breathe on her own.  They sent her to the NICU for oxygen and monitors due to heart problems.  I asked why was she born ok.  I told them they were wrong that she looked perfect.  They said there were certain markers they looked for and she had them. One of them being her hand and thumb.  I can still remember trying to convince them she had just inherited my hands and being so mad that they didn't want to look at my hand and see what I was trying to show them.  Lily's dad was accusing them of switching babies after he was made to leave the room and leave her.  And he was serious!  And mad!  I can still remember the nurse telling him he was being ridiculous and he better face the facts!  That she had been a nurse for 25 years and, "she knew 'one' when she seen one".  Her words were like a slap on my face.  And to this day I can still hear her bitchy tone.  The next few days to follow were so blurry.  There was so much literature being brought to us.  And I hung on to every word in every pamphlet.  I wonder if I was looking for an explanation or just comfort.  The one thing that I really reread and remember was the essay, Welcome to Holland.  It was so true and so comforting.  It all seemed so surreal.  And her dad just kept saying they switched the babies, she was ok when she was born, and now she isn't.  They did something to her.  He was in denial.  And I chose to face the truth. Because deep down inside I was ready and prepared for this outcome.  As ready as anyone can be!  I started to grieve anyway.  Not for me, but, for her.  For the fact that she would always be classified and looked at differently.  I mourned, and I cried, for what wouldn't ever be.  I could not get pass the sadness of loss.   I wonder to this day what was more healthy, my reaction, or her dads reaction.

Lily had ASD and PDA.  She also had PPHN (persistent pulmonary hypertension of a newborn).  And to add some more guilt to my heart they said she had Thrombocytopenia due to maternal Lupus.  The good news was her two heart problems were so minor she probably wouldn't need heart surgery, which is so common to our Down Syndrome infants.  My poor baby couldn't breathe on her own, suckle or make platelets.  She had to have one blood transfusion after another.  It was so hard seeing her with an IV in her head and tubes and monitors attached to her.  I tried  hard to breast feed her but she could never remember how to latch on or suck.  But I tried for weeks before I gave up and just gave her my pumped milk.  I figured I could at least make milk right.  Yes, I was starting to have a pity party.  But I was all alone at my party.

I remember the first time I went to the NICU to try and feed her and all I could do is hold her.  She had no interest in eating.  I stared at her perfect face. and I put my finger to her little hand and there was never that reflex grip of her wrapping her hand around my finger.  Right than I knew for sure that what they were telling me was true.  She had Down Syndrome, she was different. And for months I grieved that simple little loss of her not being able to grip my finger.  Looking back I wonder why I took that loss as one of the greatest losses of them all.

Lily stayed in the hospital until she was 3 weeks.  We were so blessed that her health issues were never life threatening.  And at 6mo, on 9-11-11 she was released from the cardiologist care!  She has only a slight murmur but nothing to concern the Dr with.  We knew from birth that she had no hearing in her left ear.

I stared at Lily a lot in the beginning trying to figure out what about her looked like she had Down Syndrome.  I just couldn't see it.  I don't think it was denial.  I don't think I have ever been in denial.  And I think I was the first to notice when she did start looking very different.  I don't think I will ever stop mourning what she wont have in life.  But, now I also notice what we were given by her being born with an extra chromosome.  She is truly a shining light!