Thursday, April 7, 2016

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!


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