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A Toddler in a Teenage Body

Since the very end of January, Mr. Sexy and I have been been waiting for Marie’s test results from the behavioral specialist. Well, it’s only 3 months later and results are in! We received them one week ago today, as a matter of fact. Let’s just say it’s the icing on the cake to everything else that has been going on.

I’m not going to get real deep here. I just want to share the results because I have been talking about this for so long.

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Method to My Madness

Wow. I am certainly not handling this day very well.

I have troubles with a family member who doesn’t seem to care about me or my family. I have a step-daughter who blatantly disregards the simple boundaries I give her on a daily basis. There are people on soap boxes every where I look (yup, I have one of my own).

So, today, my mind and my heart are at an unrest. I am praying. I am reaching out to friends. Now I am writing.

For today, I am going talk about that step-daughter of mine. The who has down syndrome, is going through puberty and doesn’t respect given boundaries.

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Bad Dream, Bad Dream, Go Away

Do you ever feel like you’re living a bad dream that just won’t go away? Well, that’s how I have been feeling lately.

You see, there is this wedding…

Just kidding. Inside joke.

You see, there is this child. She is 13. Everybody likes her. Everybody seems to want to be her friend.

Her name is Marie and she is my step-daughter. Oh yes, she also has down syndrome.

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A Broken Gift

Disclaimer: I understand that all kids (and people, for that matter) dabble in rebellion and don’t always want to abide by the rules. That is not the point I am making here. Marie is 13 and has down syndrome. She is 13 and can’t (or won’t) follow simple instructions. Please don’t comment comparing her to all the other kids out there who are “normal.”

When you walk into my house, our computer desk is one of the first eye sores in the room. Like any used work space it quickly becomes cluttered with mismatched items who don’t seem to have a home of their own. Every once in a while I spend time de-cluttering and organizing piles of crap. This time I came across one of Marie’s Christmas gifts.

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Homeschool Roller Coaster

For my birthday (which was yesterday) Mr. Sexy sent me to my girl friend’s house for a night of some R&R.  (More to come later because I have amazing friends and family.) The visit was much needed and while I got to hang out with her beautiful girls, my kids were nowhere to be found.  I missed them – sort of.  But then when their baby wouldn’t sleep or their toddler happened to throw a tantrum I remembered what I was getting a break from.  This meant Mr. Sexy was home dealing with all that mess.  By himself.  It was fun for him- I think -sort of.  But it also had it’s difficulties as Mr. Sexy saw firsthand many of the difficulties I face with Marie every-day-all-day.

We are getting off the homeschool roller coaster.

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A Helping Hand

Over the weekend I had the opportunity to practice something called: Letting it go.  Feel free to break out in song.

There will always be somebody who thinks they know how to better parent my kids.  Heck, I have probably had that same thought about you.  (Just keepin it real people.) Truth is, parenting is one of those hot topics. It often feels like there is one right way to do things and many wrong ways.  Now tie in the special needs kids.  There is ALWAYS better parenting techniques for them.

Michael wanted to skate at the fair and it was a much better deal than the rides.  Mr. Sexy and I had no desire to skate ourselves so we rented the two kids skates and set them free.

After a few minutes this is what we were watching:

In these moments it appears they had given up.  It’s over.  It’s too hard.  I’m stuck.  I can’t do it. 

But just give it time…

Michael was right back up and across the rink.

Falling the whole way.

Marie, on the other hand, stayed in her same general position.

Now, Mr. Sexy and I had made the parental decision to give both kids free reign to skate and fall as they pleased.

This meant Michael might end up with a bruised tail bone and Marie would most likely not get much farther than the above picture.

We knew this.  And we were fine with this.  We were looking forward to seeing how both kids did with this small amount of freedom.

A stranger, however, seemed to have different thoughts.

Before getting skates I had stopped to admire the purses and skirts a lady had made with ties.  Only ties. The kind of ties men wear to church or to work or on picture day.  She seemed to price them reasonably and if I had the money I may have bought one just because they were so unique.

Well, that same lady didn’t waste much time in approaching us as we stood and laughed and pointed at our dorky kids who didn’t know how to roller skate.

“Would you like me to go out there and help her?” the lady asked.  “Her,” being Marie, obviously.

It felt like a random request that made no sense to me.

“No, she’s okay,” I said.

This lady seemed to feel very strongly about her request: “Well, she isn’t moving.” And she looked at Mr. Sexy and I with a stern, disapproving face.

Well, my pulse quickened and I felt warmth creep up my face so I replied in my syrupy-sweet-voice, “No she’s fine. Thank you.”

You should all be impressed I said “thank you.”  But keep in mind it was a firm “thank you.”  The kind that said the conversation was over.

The lady gave us another look, telling us we could go out there without skates and help her if we wanted.

Nod of the head.  Turn away.  Face burning.  Tongue bitten.

Breathe.

I. Hate. That.

I know that people tend to feel sorry for Marie – especially with horrible parents who give her the opportunities to experience life  on her own! She has spent most of her life being led into activities by adults to such a degree that she prefers adults to peers.

So, while my face cooled off and I laughed at Michael for crashing once again, I saw our parenting strategy flourish.

This is the kind of interactions Marie needs.  She doesn’t need another adult who wants to rescue her.  She needs someone her own size to invite her into the adventures of life. Then it’s up to Marie to decide what to do next.  This time, she took a friend’s hand and ventured into the scary sea of a roller skating rink.

Marie left her comfort zone and hung on for dear life.  Literally. 
Have you ever skated with someone who doesn’t know how?  Especially one that’s your size or close to it?  Simply getting Marie from sitting on the bench to the rink took all my muscles as she simply leaned back into me with all her body weight.  
I should have videoed the skating.  It was like watching Bambi. 
This was Marie’s first and only fall of the day.  From what we could see on the sidelines, she refused to get back up even with the help of her new friend.  Her friend retrieved the learning-to-skate-thing for Marie, helped her up into it, and skated off.  
Again, a great thing for Marie to learn.  
Marie had a friend who wanted to help her.  Then Marie decided she didn’t want to continue.  So Marie lost that friend. 
Marie actually did figure out how to move around on her own.  It took her a bit but she ended up on the other side of the rink and then came all the way back when it was time to go.  
She wouldn’t have had those rich experiences without the helping hand of a peer. 

Finding the Source

I’m hoping that today doesn’t involve a diaper full to the brim with stinky, mushy feces.

I’m not talking about baby Denai.

Marie has been wearing depends full time for over one month now because she has been having “accidents” throughout the day.  I say “accidents” because I can’t believe she is having accidents.  But then again, I seem to be learning not to be surprised by anything Marie does.

She has down syndrome.  I have known her for four years and I still can’t figure it out.  The down syndrome part, I mean.  And since I can’t figure out the down syndrome part, I can’t figure out the Marie part.

This makes for difficult care-taking/parenting moments.

Every once in a while I have been referring to myself as more of her care-taker than her parent.  While she still calls me “mom,” I’m not sure I’m too happy with the title.  That might sound messed up.  I don’t really get it either.

So, we are in weekly counseling. It’s been really great for me.  I love the counselor.  She makes me feel validated in my feelings – even the really huge ones.  She asks probing questions to get me to think about where my feelings may come from.  She gives me homework that I can accomplish but if I don’t get it done, it’s no big deal.  She is firm with me in some areas, gentle with me in others.

Ciena is wearing depends today – just like yesterday.  But yesterday she had an “accident.”  She pooped.  Was it on purpose?  A true accident?  I don’t know.  Nobody does.  You may ask why she didn’t use the bathroom?  I asked her that same question.  She didn’t have an answer.

I think ever kid/person has a safe spot they like to retreat to.  Marie is like that.  In our new house, the stairs have become her safety zone.  I can’t say I mind because I know where she is and she only gets in the way when she sprawls out and doesn’t move when someone needs to use the stairs.  So, she sits on the stairs unless directed otherwise, and from the stairs she can see the bathroom.  Does she use it?  Well, she didn’t yesterday.

I do think I am the source of the problem with Marie’s behaviors.  As I work to accept that, I can start working towards fixing myself.  And that, my friends, was my conclusion from yesterday’s counseling session.