I need to write. I need it to soothe my soul.

I need to write. I need it to soothe my soul.

Yet what I need to write about is so difficult, so emotional, so painful for me, that I find myself doing everything but writing.

We have been seeing a new psychiatrist since mid-June. She is horrified by the amount of medication Noah is on. She wants to try and pull him off everything so she can see what his baseline is. She says it will be a long process; six months or more. He may end up hospitalized at some point. And she acknowledges that we may not be able to get him off everything.

Rich and I agree with her. We have been questioning the medications for a long time. Yet we trusted the previous psychiatrist. We needed to trust him. We had no reason not to trust him.

Now we need to trust the new psychiatrist (TNP).

TNP makes me uncomfortable sometimes. It was a rocky start between us. I was convinced after the first appointment that she doesn't like me and that she thinks I am the reason Noah is so messed up. I don't think she believes that now.

Now I think she has had a chance to see just how bad things are with Noah. How disconnected he can be. How disorganized his thinking is. How worried we are about him. How much we love him.

She indicated the disorganized thinking could be an indication of future psychosis.Or not.

Today she was concerned about how disconnected he seemed. That sometimes he just isn't "there."

I wanted to be a smart ass and say "uh, yeah, why do you think we are here?" But I didn't. I just nodded my head and said "yes, I know."

She told me last week that Noah is the extreme of the extreme of the outliers. He isn't a single diagnosis, or even two. He's multiple. And we don't even know all of them yet. Or what may spring up as he grows older.

My child is complex. My child is difficult. My child's future is unknown.

I haven't told you everything though. I can't tonight. I've cried enough for one day. Maybe tomorrow.

Doing the science, so you don't have to.

I was a bit of a science geek in school. I capital L-O-V-E loved MacGyver. I didn't have normal crushes on normal teen idols, oh no. Once I moved past Shawn Cassidy and Donny Osmond, it was pretty much MacGyver all the way.

And just to prove he still sets me all aquiver, I just wasted an hour at this website dedicated to the series.

Anyway...I could write an entire blog post or twelve on why I loved the guy so much (shut up! He was not just a character!). Or tell you how when a guy I was dating fixed my furnace with no more than a rubber band and a paper clip (I shit you not!) I was so turned on I wanted to throw him down on the cold, hard basement floor and have wild monkey sex with him right then and there, but I won't bore you with those silly stories.

Because really, when I sat down to write this I was going to tell you how much I loved science and how in the MNT household I am keeping that love alive and passing it on to my children. Until I got sidetracked by my lusty thoughts of MacGyver that is.

But back to science, and my children, and passing on the love, etc. etc.

I always assumed that I would be one of those moms that did science experiments with her kids. I also assumed I would be one of those moms that did all kinds of cool things in the kitchen with her kids, and did art projects, and took them to cool, educational places.

And then Noah came along and I tried all of those things and the ingredients for the science experiment were all dumped in together, the measuring spoons were thrown into the mixer while it was running, the paint ended up every where but on the paper, and he was "that kid" inside the giant heart at the Franklin Institute that wouldn't come out.

So the paint dried up, and the baking slowed down, and we stay away from giant walk-in hearts.

But, we still do science experiments! It's just that they are rarely planned or intentional. We do however learn from them.

For example, just the other day Kiel taught me that combs don't flush. They also don't really float. In fact, they will slide down far enough into the workings of the toilet that you don't really know it is there. Well, not until after your morning constitutional and you realize the toilet is plugged up, so you get the plunger and start plunging away. So you plunge and plunge, and finally things are moving again, but you can still see a little bit of blue way down just peeking out into the bottom of the bowl, with some floaters around it. You start to think that maybe Kiel tried to flush his night time pullup down and figure you are going to have to pull it out. So you try to get clever and turn the plunger around and fish it out with the handle end. But that doesn't work, and you realize if it was indeed a pullup there is no way anything would be flushing down. So you plunge some more, and you flush, and you prove to yourself that the water is flowing down again, but you still see this little bit of blue, way down deep in the bowl. And you still see some floaters, so you know it isn't all going down. Plus, you didn't hear that satisfying gurgle burp that you usually hear after a successful unclogging.

And then you realize that you have nothing left to do but plunge your hand down deep into the toilet and pull it out yourself. Don't worry, I promptly cut my hand off at the wrist so no worries if you ever do meet me in person, just shake my left hand. And out came my big blue comb. The comb I use every morning to untangle my wet hair. The comb that now has shit stuck between some of the tines. The comb that was picked up yesterday morning by the trash guys.

So remember, combs don't flush. The combination of comb and shit doesn't float. And no matter how many times you flush that comb is still going to have poop between the tines.

Awesome stuff right?

Now, just the week before Noah helped me conduct another science experiment. This one involved one of those sandwich cracker packs, the pocket of his shorts, and the washing machine.

Maybe it was his hint that he wanted me to make meatloaf, because those crackers came out perfectly crushed. The consistency and uniformity of the crumbs was truly perfection.

Unfortunately, the crumbs didn't stay in the wrapping they started out in. They didn't even stay in the pocket. Oh no, they left a nice uniform coating of wet cracker crumbs on all the clothes and the inside of the washer and then the dryer.

I'm all for multi-tasking and economy of motion, but take my word for it, crush your crackers by hand. Doing it in the washer and dryer is highly inefficient for both effort and output.


And there you have it. I did the science so you don't have to.

You are welcome.

Wordless Wednesday

Like all guys,

Kiel loves his Woody.

tied together

Today was one of those days with Noah that was perfect.

He was absolutely delightful to be with. Accepting. Patient. Helpful.

We had a developmental pediatrician appointment this morning, and they were running an hour late. Noah didn't fuss, and he asked nicely if he could go play fuse ball in the lobby up front, so he and Rich went to play up there while I waited. When the doctor was ready for us he came right back when asked.

He interacted appropriately with the doctors, answered questions, was helpful. Just all around awesomeness! Compared to some of the appointments this one was amazing.

The plan was to take him to school after the appointment, but it went so long that I didn't have time to get him to school and get myself to an appointment that I had. So Noah went with me. He waited in the lobby while I was in the room. I let him play Angry Birds on the phone and the receptionist said he never moved. He even answered a call for me and told them I was in seeing a foot doctor. He had no idea who it was that called though. He just didn't want them to think I was ignoring them.

After that we went to McD's for lunch, where again, he was awesome. Then we ran some errands and picked Kiel up from daycare.

Days like this are what keep us going. This is what stays in our memory, and the negative event are less likely to pop up when we have a new positive one to work from.

Days like this prove to me how tied my emotions are into his.

Another type of loss

I can't even begin to express how lucky I am to have my "Soul Sisters" behind me. The amount of support and love they have given me is immeasurable. I have no doubt that we would not be moving forward with Noah as we are if I had not met them.

One of the best sources of support for our group is that we have a private place to chat with each other. The only place many of us can really let it all out and say the hard stuff, that "normal" people would not understand.

Everyone there is struggling with their kids. Kids that are dealing with developmental delays and mental illness. So many different diagnoses: RAD, ADHD, bipolar disorder, schizophrenia, PTSD, FASD, ASD, PDD, etc. etc. All of the children hurt by trauma of some type.

We are families that are struggling to keep it together. That are fighting to stay safe. That are fighting to find services for our children. That are fighting to keep even the smallest bit of hope alive.

Many of the women I have met have lost relationships during their journey. Relationships with friends, coworkers, neighbors, parents, brothers and sisters, spouses.

It's painful, and isolating. And reinforces already complex feelings of failure because we haven't been able to "fix" our children.

And in some ways we kind of understand why these relationships have broken. Certainly if we don't understand our own children, how can we expect others too? So many of us have struggled for years trying to find the correct diagnoses, trying to find the right help. Reading book after book. Scouring the Internet for resources. Trying over and over again, and seeing little if anything help change our children's behaviors.

So we think we have failed. Again. And when our friends or family pull back, that reinforces the feelings of failure.

We know that "typical" parenting techniques don't work with our children. Believe me, I think we have all tried them. Of course we have tried them. Because that's what we hear from other parents, and even from professionals.

We joke together about how many times "sticker charts" or "picture schedules" have been suggested. How many times we have been told to use "natural consequences" and "time outs." Or the old school thoughts on spanking.

How often have we heard that "you let your child get away it." "If you were firmer with her she wouldn't do that." "You need to let him know who is the boss." "You let him run the show."

How often is it implied that we are the reason our children are "fucked up."

How often do we feel judged, and wonder if maybe "they" are right. 

At a minimum our kids behaviors are annoying and frustrating, at their worst they are frightening. 

So how can we blame others if they stay away. If they don't want to have our children around them?

Truth be told, I can't blame them. Yet, it doesn't mean we don't need our family and friends. It doesn't mean that it isn't very painful when those relationships are lost, whether the bonds are cut by them or by us.

It's not our children's fault that they are damaged. It's not our fault as their parents either.

It's ironic actually, that so many of us are trying to teach our kids what love is, and what family is, and how to trust others, yet we are lacking that in our own relationships with our own families.

Moving forward

I'm still moving between anger and sadness and doing. Wash, rinse, and repeat.

I think I forgot to mention fear yesterday. The fear that I won't be enough for Noah. The fear that nothing will be enough for him. The fear that he will be a statistic no matter what we do.

And also the fear that if we can't learn to manage his rages in the next several years, especially important before he hits puberty and hormones start. Well, shoot me now! There has to be a line in the sand that we will not allow him to cross. We haven't set that line yet. I'm not ready to set that line yet. But at some point we may need to give it serious thought.

Thinking like that just kills me.

But beyond the fear, today I am in "do" mode. This is the time in the cycle when I am at my best.

I can make doctor appointments, find my way into specialists, research the current treatments, and read book after book. And yes Noah's elementary school principal, I just might have a 45 minute Power Point presentation for you again next fall. Which I rocked! Despite your suckage.

I do "do" well. We have three specialists appointments coming up in the next two weeks (developmental peds, International Adoption Health Clinic, plus the new psychiatrist), plus we have an appointment with an expert in FASD.

The ball is rolling to get in with the neuropsych department at CHOP so I just need to wait. Our IA doctor submitted that referral.

Two of my Orlando sisters sent me books. Thanks Laurie and Torina!

And Laurie came down with her husband and two kids (one RAD, one FASD and bipolar) Saturday to go to the zoo with us and give us some moral support.

Laurie is amazing and has been a huge support for me. I have to give her full credit for getting me on this path.

Obviously, I don't want to be on this path, but we are. And the path seems to make sense. I hope it will help us figure out who Noah is. If we can find his strengths and weaknesses now we can learn how to help him use them best.

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I like that I am writing again. I missed it. And I certainly needed it. 


I'm starting to question the title of my blog though. Mommy Needs Therapy or a Bottle of Wine.  Is that still appropriate do you think?  Or am I just being extra sensitive right now? Any other thoughts?                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    

Snapshots in tears

I imagine everyone has moments in time that are permanently etched in their memories. Snapshots. Perfect memories. Memories that are so strong you still have every detail of them.

 The first time I realized people actually had sex on purpose.

The first time I realized that I just might kick ass academically in high school.

My first real make-out session.

My first break up.

Finding out I had passed the pharmacy boards.

Chatting with Rich for the first time.

The visit where he got confused with the time he was supposed to pick me up from the airport and was two hours late, and I was convinced he didn't love me anymore.

Opening and reading the email that told us a baby was waiting for us in Russia.

The doctor telling us he had embryos he would like us to have.

Seeing that first positive pregnancy test.

And now, I will always remember that moment, at 3:05pm on Tuesday, May 24th, 2011, when Rich called to tell me that we had the results from Noah's MRI. Results that showed brain damage consistent with fetal alcohol exposure.

I cried for the rest of the day. I couldn't stop the tears from coming. I felt like our lives had been knocked completely off center. I was devastated. I still am.

Noah has a fetal alcohol spectrum disorder (FASD). A completely preventable birth defect caused by ingestion of alcohol by his birth mother when she was pregnant with him.

In the two weeks since we received the MRI results my emotions have moved from devastation to pissed off to relief that we finally have an answer that makes sense to anger to sadness and back again.

Devastation for the permanence of FASD and what this means for Noah and his future.

Pissed off at his birth mother that she did this to Noah.

Relieved that we may finally be on the right path to figure out how to best help him and understand him.

Angry that it took eight years to figure this out. That no one ever suggested we test him for FASD. That when I look at pictures of him as an infant and toddler I see the physical features in his face - subtle yes, and not at all detracting from how gorgeous he was and is, but yes, still there.

I'm angry tonight because we lost eight years of therapy and interventions that could have been targeted towards a brain that was damaged, instead of floundering around as we did guessing and hoping something would work, when really, nothing we did worked. Angry that we spent years thinking we were bad parents, believing others when they said we were making Noah worse, even though in our hearts we knew we were doing everything we could.

Angry that Noah is always going to struggle.

And sad, so sad, that my child, the child of my heart, was hurt. And that no matter how much I love him, and how much I fight for him, and how much I try, I can't fix that damage. All I can do is try to help him learn how to make the most of what he does have. And continue to fight for him. And always be here for him.

I still have tears to shed. I still have anger to work through. I still have knowledge to gain. I think though, that we are finally on the right path.

I will have more to share soon. Hopefully more information, with less emotional drama in the telling.

red handed

One wall of the karate studio is entirely mirrored.

Today after Noah's class he didn't come to me like he usually does, so I was looking around for him as I spoke with another mom.

In the mirror I saw him in the little alcove by the front door, where they have a cooler full of water and Gatorade type drinks that they sell for a dollar.

Noah was crouched down in front of it with the door open. I watch as he closes the door and picks up his shoes. I'm curious, but don't see him with a water bottle in hand.

I say his name.

He freezes, then dives into the corner to hide behind a shelving rack. A few seconds later he pops his head up and looks around. For the life of him he can't figure out how I can see what he is doing.

So he crouches down again and I see the refrigerator door open. I see his hands go in, and his head, but can't quite see what he is doing.

Again, I say his name.

Again, he freezes, and dives into the corner. He looks around. He knows I am still in the same spot. He still can't figure out how I know!

He walks over to me and I asked him if he was drinking the water. Hoping he isn't stupid enough to say no, considering there is a red ring around his mouth from the red sports drink he was sneaking.

This time he was honest. I think he knew I could see, even if he wasn't sure quite how that was happening.

He tried to tell me he put a dollar in the can, but couldn't quite come up with how the dollar came into his possession other than some lame excuse about it jumping into his pocket.

His response? Well, I did it last week and no one stopped me.

*sigh*

*head bang*

*sigh*

I removed the half empty bottle of water from the fridge and threw it away. Noah and I had a long talk on the way home about stealing and how what he was doing was stealing from his karate teacher, someone he respects, and that made it even worse.

He couldn't quite get past the fact that he did it before and didn't get in trouble, so why is he getting in trouble now?

I also tried to explain that it upset me even more because he tried to lie to me about it, and to top it off, he chose a red drink, knowing he can't have red food dye.

So I had to give him the "I'm disappointed that you put something in your body that you know does bad things to your brain" bit.

When we got home he had to write an apology note to the instructor and offer to help him do something in the studio to make up for the water/drinks that he stole.

I don't know if this is the right response, but it was all I could come up with today.

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I know I have been gone for a long time. I hope to make that up to all of you soon. I do have much to tell you, but some of it is difficult and that is what is holding me back. Soon, very soon I will be back here on a more regularly irregular schedule. Miss you!

Breaking

Tonight my heart is breaking for Noah. It feels like the demons in his head are winning. I don't know what else to do to help him fight them. Nothing is helping right now.

I caught him walking out of the house with a table knife in his pocket. He doesn't know why he had it, just that he felt like he needed it. There is no sense in it. We were on our way to meet Rich and Kiel for dinner.

Asking him to remove the knife and other objects in his pocket triggered a temper tantrum. Telling him we were not going to go out to dinner because he wasn't able to listen and follow directions resulted in a full out rage.

I videoed about a minute of it, and he is like a crazed animal. It's so frightening. For him, for me.

The psychiatrist called mid rage so he got to hear the screaming and banging over the phone. More changes to his medication. He is on lithium now. I never thought we would reach that point, and definitely not so soon.

He's asleep now and should be good until morning, although he has nightmares most nights.  I hope I can sleep.

I don't believe in god or hell. But tonight I think I believe in demons, because I don't know what else could be tormenting him like this.

My poor little boy.

Friends - I got me some

I've not nurtured friendships very well since I got married.

When I first moved here to be with Rich I didn't need anyone but him. I didn't care to be with anyone else. I missed my best friend in Michigan, I still do, but getting ready for the wedding, starting a new job, and living with my future and then new husband consumed me. There wasn't anything I couldn't share with Rich so between that and my shyness and social awkwardness I didn't try very hard to make friends.

Then we went through all the infertility crap and it was too hard to be around anyone that could or did have kids the old fashioned away because it just wasn't FAIR. (Said with my whiniest voice.) It was too painful.

And then Noah came to us and I was consumed again, with our little family of three and trying to figure out to be a mother. I started to meet some of our neighbors and a few people in the mommy and me classes we did. But I let that awkwardness get in the away with some of them. And then the two women that I got the closest to and really did connect with, well, they both moved.

Then Noah's behaviors started to show themselves and the few connections we did have with other families gradually faded away because we were uncomfortable having Noah around other kids because it never ended well.

And that just continued. And I stopped trying. I just accepted that the neighborhood moms thought I was odd and that I didn't fit in.

But tonight I sit here and I can tell you that even though we are in our lowest point ever with Noah - And I mean it is capital B A D bad right now - I now have friends that I can trust and talk to.

Thank you Donna and Shelley for coffee this morning! We missed you Julie!

Thank you Jennie for calling me this afternoon and letting me know you were thinking of me. I needed that hour of venting and laughter and sharing. You are a special woman and one of my heroes!

And thank you Jason for really caring about me and my family.

We may be in one of our darkest spots right now, but today I had three bright, warm lights shine on me and it made all the difference in the world.

Thank you my friends!