The Shootout at OK Corral

I have to tell you, dear ones, that I have never stalked into a meeting so ready to fight, and then...I found that I didn't need to.

Niko's IEP meeting was on a ridiculously tight schedule.  We had about an hour to complete the entire thing, so I basically walked in and said, "We feel that this isn't the right placement for Niko.  Although wary about the autism placement, it's preferable to here.  We'll reassess again at the end of the school year.  Enough of that.  Let's talk about the abuse allegations that I'm hearing about."

Their jaws dropped.  DROPPED.  They were absolutely horrified.  We looked at their faces and realized that they genuinely didn't have anything to do with it.  I shared the information that I had, told them who I was warned about, and demanded that the earlier abuse allegations be documented and put into his folder immediately.  They did so while we watched.  And then there was smiling.  They held sweet Lil' Lil.  We talked about how amazing Niko's speech is coming along, and how best to control his extreme anxiety, and how much he wants to please us.  We discussed his mind-boggling aggressive behavior at school (kicking, hitting, singling out victims) and how that behavior was nonexistent at home.  When they gave him his own floater aid, the violence dropped to nearly nothing.  He had 17 kids in his class, and it was too much.

The autistic placement turned out to be a godsend.  It wasn't right for him before, and we made the best choice at the time, but right now he is thriving.  It's delightful to receive notes from his teacher saying, "Did you know that he knows his colors?"  She constantly tells me how well he responds to ABA therapy.  She uses words like "delighted" and "amazed" and "impressed".  There was a bus snafu (okay, so there were many) and his teacher swooped in, fiercely protective of him, even though he has only been in her class for a few weeks.  She's truly playing for Team Niko.

He's happy.  He comes home humming new songs that I'm not familiar with.  He asks to go to New School.  He's himself again.

I couldn't be more pleased.

Battle

So Niko hates school.  I know, right?  He's usually wild about school. Mad about school.  Last year he loved his teacher, loved the bus, loved his homework.  This year he cries.  Suddenly I hear that he's aggressive.  Each morning he begs, "Mama home?" and wails while I put his clothes on.

You know me.  You know where my mind goes.  As soon as I heard that he was assigned to the same school where he was "allegedly" abused before, I stood my ground until he was switched to a different school. YAY!  But he's regressing in potty training, even at the new place.  He's changing.

We have an emergency IEP meeting scheduled for tomorrow.  They, once again, feel like he would do better in an autistic placement.  I'm not certain how I feel about that placement, but I know for sure that he is NOT thriving where he is now.  But I was just pulled aside and informed that I should "check Niko for marks".  That two kids in the special ed department from his new school have pulled their kids out.

Nobody should have to check their kids for marks as soon as they step off the bus.

The meeting is tomorrow.  My husband took work off so we can attend together.  It isn't going to be how it was last time.  I'm not going to weep and cry and shudder to the ground.  I'm going to dismantle everything if I have to.  Scream the walls down.  Call the media.  Carry a fiery sword and defend our children.

I also found out that the schools have no record of the abuse that went on before.  They have record that they suggested an autistic classroom for my non-autistic son and I stubbornly refused, but no record that an earlier teacher put her hands on him.  Repeatedly.  With witnesses that refused to speak up when interviewed later.  This will change.  All of this will change.  This is mostly because I have changed. I'm not going to be intimidated anymore.  I'm going to look this broken system in the eye and say, "I'm stronger than you."

Oh my goodness, have I really not updated since MARCH?  I don't even know what to say.  Life was busy, I guess.  I updated the other blog more regularly.  I've been happy and sad and stunned and baffled.  Let's make a long story short, shall we?

I was on bed rest for about three months.  The twins came as a very sudden surprise and were born about eight weeks early.  We named them and held sweet Seija in our arms while she passed. She lived about five hours.  Lilia is still in NICU and has been there for about six weeks.  She's having difficulties with her heart and with breathing, but she's absolutely beautiful and a joy.  I'm having difficulty with being the mother of five children but only three are alive, and one hasn't even been able to see sunshine yet.  There are good days and bad days. 

Some of you know that Niko was "allegedly" abused by his special education kindergarten teacher.  There was a slapdash investigation by the school district and the teacher had to take a class on Williams Syndrome. She still teaches there.  I was not satisfied with the outcome, but was too heartsick and naive to do any better than I did at the time.  (If you want to read about that situation, it starts here.  Seriously, I read it and felt nothing but sympathy and sorrow for sweet, befuddled me.)  I received a letter saying that Niko was assigned to that same school for this school year.  I can't believe that even happened.  I get to call them tomorrow and tell them in no uncertain terms that my son will NOT be going back to that school for any reason, and to change his assignment immediately.  I'm filled with equal parts rage and sorrow, but I realize that I'm much stronger than I was just a few years ago. He is my son, and he's beautiful, and he deserves so much more than he's being given.  He isn't an afterthought, and I'm not afraid to stand my ground.  Wish us luck.

It's cliche but I truly believe that it's darkest before the dawn.  In my experience, you have to go through all of this awful stuff, and then something absolutely amazing happens.  I'm expecting it. :)

Finally, Good Baby News!

Every time I go to the doctor, the news has been bad. One of the triplets died. One will most certainly die. When the second one passes, it could very well take the third with it.

Well, enough of that! Today we received wonderful news. Although sicky baby will almost certainly pass away soon after birth, for the first time we’re looking with optimism toward meeting her. The doctor was surprised at how well she was doing. “Delighted” was the word that he used, and I’m delighted as well. She’s doing so well that there isn’t a reason not to expect her to survive until birth. The other baby is doing extremely well, also. Hooray! Now I can definitely spend the day writing with a lighter heart.

Incompatible With Life

We learned that while one baby continues to develop normally, the other one has been diagnosed with alobar holoprosencephaly. This is what ultimately led to the demise of the first triplet. We just learned that it will most certainly lead to the demise of the second. My sweet girl (they’re all girls! Yay!) has severe intracranial and facial deformities that leave her “incompatible with life”. What a strange phrase. It makes my mind go in so many different directions. It’s intriguing in it’s starkness. While the news was tough to swallow, I’m still very proud of her. She’s such a fighter, and while my ultimate goal is to hold this sweet little one alongside her sister for a few minutes in this life, I’m prepared in case it doesn’t happen. Prepare for the worst and hope for the best. It has become our family motto over the past few years, and I have never regretted doing just that.


As you can perhaps imagine, I’ve struggled with writing for the past month. It’s difficult to focus on a project when my mind keeps wandering away to other things. Suddenly my priorities have become very clear, and it’s remarkably refreshing. I unplugged the phone. I stepped back from activities that take me from my family. I’ve learned how to say no when no must be said.

I also realized that writing is how I cope. As I’m contemplating our changing family, and our changing expectations and dreams, I discovered that I was thinking of this whole situation in essay form. I was carefully choosing my words in my head, trying to find the right phrase so I could accurately express what I’m feeling. “I’m sad,” doesn’t cut it. But the essay I wrote in my mind, the one about the conflicting emotions that come with looking at new strollers for one child while looking at infant caskets for the other…well, that is how I think. It’s how my brain works. I find much more comfort in that than I do in anything else. When I put the words down, it is neat and clear and lines up nicely. It swirls in my brain, but it makes sense on paper. It’s a comfort, and it’s a joy.

I hope that you can read this essay one day. While it’s sometimes difficult to accept the road that life sometimes takes us on, there is always happiness among the sorrow. How truly fortunate are we that we were not only blessed with one, but three children? Losing one was terribly difficult, and losing two will be worse. But how wonderful is it that there is a third, this miracle baby who is completely untouched by the anomaly that felled her sisters? I’m very aware of how there is beauty and joy amid the sorrow and loss.

I typed the words “incompatible with life” into my search engine. I was astounded by how many hits came up, how many pictures and stories. That, too, was comforting. Sometimes it seems that we’re the only ones going through whatever situation it might be, but I’m learning that is never the case. There is an army of us out there.

Why Am I Thinking Of The Rolling Stones?

At a time when my heart is breaking?


We were calling the triplets Winkin, Blinken, and Nod, but discovered today that Nod has passed away. It’s funny how you can become so attached to somebody that you haven’t met, but that’s the way of it. While I mourn for the child that we almost had, we’re still excited that we have what seem to be two very energetic twins, and that’s a blessing.

I do believe that things happen for a reason, even if it’s only to teach us strength and empathy. I wish that this wasn’t a lesson that I needed to learn, but that’s where the Stones come in. You can’t always get what you want. I just need to focus on the rest of those uplifting lyrics, and remember how much I believe in hope.

Thank you for your kindness concerning all of this. I’ve been a bit overwhelmed for a few weeks and haven’t been able to respond as personally as I would like to, but please know that you’re very appreciated.

Surprise!

I wrote a post a few weeks ago celebrating our tenth wedding anniversary. I’d been feeling a bit unwell lately, so imagine my darling husband’s surprise when, after our anniversary dinner, I shouted “SURPRISE!” and announced that I’d just discovered that we were having our third child. How wonderful! How unexpected! A surprise indeed.

Then we were robbed ten days later. SURPRISE!

Today’s surprise took place at the first ultrasound. My dear friends, I am not exaggerating in the least when I tell you that my breath was taken away. We saw the baby for the first time. Then, SURPRISE! There’s another baby! Twins! We’re having twins! I couldn’t believe it. Can you believe it?

But since we never do anything halfway, SURPRISE, SURPRISE, there are actually three babies. That’s right. Triplets. Suddenly we will go from two kids to five. I can’t wrap my head around it, yet. Although excited, I don’t think that my heart can take any more surprises. At least for another day or two.

So let me reel for a while. And then we party! Celebrate with me!