Perspective

One of the things I got out of last weekend was some much needed perspective.

While we go through some crazy shit with Noah, we could have it much worse. So much worse! I had to be careful actually, as I listened to everyone's story, that I didn't project their reality onto Noah's future. Believe me, some of the tears I cried last weekend were because of my fear for his future.

The truth is we just don't know what it is going to be like for Noah, or us with Noah, five years or ten years or twenty years from now. It doesn't stop me from worrying and fretting over it, but when it comes down to it I just don't know. I hope that everything we are doing for him now will make his future easier. Shit, pretty much everything we do is in some way trying to help him. But when you are dealing with a childhood mental illness, you just can't know. You hope, and if you are of the praying sort, you pray I guess.

Still, right now we don't have it as hard as many of the moms that I met last weekend. In the moment that doesn't necessarily make it any easier, but when I can take a step back later and look at what is going on with more perspective it helps. Sometimes anyway.

Some of the women are going through serious shit with their kids. I think I'm feeling a bit of survivors guilt right now. Kind of ironic in a way. It's not like Noah doesn't have one seriously difficult road in front of him. A road that we will try to help him navigate as much as we can.
 

So this is what it is like to belong!

Last weekend I attended the 2nd Annual Early Trauma and Attachment Annual Meeting. I spent three amazing days with 67 other "trauma mommas" who are now my "SOUL sisters."

It was one of those experiences that is impossible to describe for someone who either wasn't there, or doesn't have children like ours.

For the first time since Noah was a year or so old I felt like other momma's "got it." No one was judging, no one was trying to lesson the seriousness of what we go through.

I laughed longer and harder than I have in a very long time. And I cried more than I have in a while. (Well, a few weeks anyway.) I got a few shoulders wet.

I heard stories that broke my heart, and stories that inspired me. I learned more about therapeutic parenting and I added many techniques to my coping tool box.

Sixty-seven women that inspire me! Mommas that foster and/or adopt knowing they are bringing traumatized children into their families, and mommas like me that had no idea what they were getting themselves into. Mommas that have survived disruption and children that could not be healed,  and mommas that have been able to help their child heal. Mommas that have walked this journey for many years, and mommas that are just figuring out what they are dealing with.

For the first time in a very long time I feel like I am part of a community and that I am accepted without judgment. I don't think any of us want to be part of this community, but here we are.

I left Orlando Monday morning and felt validated. I arrived home rejuvenated and rededicated.

I am NOT alone!

Photo credit goes to Alison at Crawford Life and Times. Thanks Alison!

MNT Dreams in Families

Have you ever wondered what it is that motivates some people to do what others would consider impossible? We all have dreams right? Some people though, they have a drive that amazes me. Like the main character Jack Rosenblum in  Mr. Rosenblum Dreams in English, by Natasha Solomons.

From Publishers Weekly:
Screenwriter Solomons's debut novel is the pleasant, ripped-from-the-family-archives story of German exile Jack Rosenblum and his unlikely postwar quest to build a golf course in the Dorset countryside. Fresh off the boat and with a Helpful Information and Friendly Guidance for Every Refugee pamphlet in hand, Jack dives passionately into assimilation, starting a booming carpet business, buying his suits at Henry Poole and his hats at Lock of St. James, and avoiding his native tongue at all costs. And while he can afford golf clubs at Harrod's, he can't check off the last item on his list: join a golf club. On impulse, he buys a damp acreage and embarks on the final leg of his assimilation. Meanwhile, his wife, Sadie, obsesses over the past, churning out Baumtortes and other confections. It's undeniably winsome, and while the pace is lackadaisical at best, the details of postwar Britain are nicely observed, and the narrative offers a sweet perspective on some very heavily traveled turf. (June)
 

I've always wanted to excel at what I do. I like being good at things. I like exceeding others expectations. I'm definitely one of those people that gets motivated by someone telling me I can't do something.

I know when it came to having a family I wasn't going to let a little infertility stand in my way. I also know with Noah I'm not going to let the alphabet soup of RAD and ADHD and BPD and PDD stand in my way of doing every damn thing possible to help him. Like Jack Rosenblum I'm going to have my "golf course," were of course golf course = healthy family.

That is one of the things that makes parenting so difficult for me, because I know I'm not always the best mom I could be. There are a hell of a lot of times I think I really suck at this gig. Other times I know I'm doing OK.

I may not have the drive to build empires, or even golf courses, but I do have the drive to work as hard as I can to be the best mother I can be. Fuck RAD and mood disorders and ADHD and people that don't understand, I'm going to kick their ass and build my own little empire of four (or should I say fore?). I started this weekend at the 2nd Annual Early Trauma and Attachment Annual Meeting, which I'll write more about soon.

This post was inspired by Mr. Rosenblum Dreams In English, the March pick for the "From Left to Write" Book Club. A copy of this book was provided to me by the publishers. I am not being compensated for this post and all opinions are my own.

I loved the book by the way! Highly recommend!

I'm working on the suckage

I'm trying to pull myself back from the land of suck. Fortunately, I'm spending the weekend at the 2nd Annual Early Trauma and Attachment Annual Meeting in Orlando and have been amazed and inspired by 67 other moms!

Thank you so much for all of your kind and supportive comments! You have no idea how much they meant to me and how much they helped.

Things here really suck.

I haven't written in a while because it was just too much. Too much shit to put out in the universe.

But that doesn't seem to be helping, so maybe I do need to write.

Life with Noah sucks right now. It's hard not to resent the hell out of him for creating such chaos in our family. I know it's not his fault, but that rarely makes it easier to live with.

His meltdowns have become rages. Animal like rages. You look into his eyes and you see something you have never seen before. He screams, he cries, he slams and bangs and throws, and hurls hate at us. And these happen at least once a day.

A couple weeks ago he went into a rage because he didn't like the bagel I had for his snack before vision therapy. I had to restrain him. Twenty minutes into it I had them call Rich to leave work and come help me. It took 50 minutes from the start of it to get him to a point we could get him to the car. It was horrifying to have to sit in the therapy room trying to restrain him and knowing everyone in the waiting room was hearing him scream that I was hurting him, that he couldn't breath, that he was going to kill me, kill Kiel...and on and on and on.

I am thankful that no one called the police that day. I am even more thankful that no one in our neighborhood has called them considering the daily screaming matches and the times he has banged on his window for "help."

And then in between the rages he apologizes and can be as sweet as sugar and I renew my efforts to stay calm and do whatever I can to help him.

I'm tired. I'm tired of so many things. I'm tired of fighting to get the school to understand what he needs, especially since I'm not really sure what that is myself.

I'm tired of dealing with his poop. And finding poop balls in the dryer because he hides poopy underwear in the laundry. And I'm tired of pee. I don't even want to go into his bedroom because of the smell. And he doesn't care! He doesn't care that it stinks, that sometimes he stinks. He doesn't care that sometimes poop falls out of his underwear and onto the floor of his classroom, which has so grossed out his teacher she has suggested we send him to school in a pull-up.

I am so tired of his refusal to do almost anything we tell him to do. OMG, how dare we expect him to be responsible for something.

I'm tired of waking up at night and realizing that once again he isn't sleeping and he's downstairs watching TV or raiding the cupboards for contraband.

I'm tired of trying to keep things "normal" for Kiel, who is so sensitive to what is going on with Noah that he is constantly asking all of us if we are happy and apologizing for things that he had nothing to do with.

And I am so tired of people, who I know have the best of intentions, telling me they understand when I know they can't have a fucking clue what it is like. You with your "normal" kids and your "normal" difficulties have no idea the hell it is to live with a child like Noah. I don't want your advice. I don't want to hear what worked with your "normal" kids. Because it doesn't work with Noah. Believe me, we've tried.

And yes, I have been talking to his doctor. We are adjusting medication. We are trying not to take it personally. I know it is the RAD and the bipolar. I know that. But it doesn't make it any easier to deal with when he's screaming at you that he wants you dead.

Helping Noah find the Beat

I vividly remember riding in the car with my grandmother when I was a toddler and listening to music on the car radio. While we listened and she drove, she taught me how to feel the beat of the music. And how to count it out. 1-2-3-4, 1-2-3-4, 1-2-3-4 

From there she taught me about rhythm -  4/4 and 2/4 and 3/4.  And how whole notes, half notes, and quarter notes combined to create the melody and the harmony.

A few years later she taught me to play the piano and was my teacher until high school, when she felt she had taught me everything she could, and she found someone more advanced to teach me.

I've always had an appreciation for music, and still find myself playing the "find the beat" game.

I'll still sit down at the piano occasionally and pick out a song, although I'm so far from the skill I had in high school and college. 

Because music was such a big part of my childhood (I not only played the piano, but I was also in the band and played the trombone) I always assumed it would be that way for my kids too. 

Learning how to play the piano is just not possible for Noah right now. He would never be able to sit through a lesson or be able to practice. And that's OK. If he wants to learn to play the piano or another instrument later on, I'll support that. I came to terms with that a long time ago.

And then in one of his early vision therapy appointments the therapist told me to start working on marching and clapping to the beat with Noah. Helping him find his inner beat and rhythm is important in helping his brain and body learn to regulate. The more I learned about the brain the more that made sense to me.


Because its been a part of me for so long, I never really thought about having to teach someone rhythm. I figured you had it (like me) or you didn't (like my husband). 


So now I'm working with Noah to help him find the beat. 


I feel a lot like I'm working with Willard from the movie Footloose.

I showed this to Noah and he was fascinated. So we spent an hour trying to find the beat. We clapped. I clapped his hands for him. We punched the Wavemaster. I punched the Wavemaster using his arms. We marched. We danced. We did funny dancing. I dug deep deep down inside myself and found my teenage self and let her out to dance. Noah was hysterical during some of it.


And then, we did the vision exercise that he's been refusing to try all week because it was too difficult (walking a line, but crossing over his left foot while his right arm swings over to the left side, and doing it to a beat). And tonight he rocked it!

It was fun. Finally something fun with Noah that is also about helping him. 


We are going to keep looking for that beat. I know he has it somewhere inside him!


If you have suggestions for music that has a good prominent beat leave them in the comments!

Mental Illness Weighs Heavy in my Thoughts

The subject of mental illness has been heavy in my thoughts recently.

And this is one of those posts that I've started and restarted several times.

It's an inspired post for the From Left to Write book club for The Swan Thieves by Elizabeth Kostova. In this book club we don't review the books, but instead we write a post that is inspired by the book.

As with many of the books we read for From Left to Write, there are many directions I could go with my "inspiration." But as I read the first few chapters of The Swan Thieves I knew what I needed to write about.

Integral to the story is Robert, a renowned artist, who attacks a painting in a gallery. As the story evolves we follow Roberts psychiatrist as he attempts to find out why Robert did what he did, it moves from past to present, giving glimpses into who Robert is, and his obsession with a woman from the past. It's a deeply involved story with many layers.

Early on I guessed that Robert was bipolar, with his episodes of mania and depression. And I knew that I needed to write about Noah, and our recent acceptance that he too is bipolar, although it is still more loosely defined as a "mood disorder" because of his age.

The incident in early December that I wrote about in this post took away all doubt in our minds that not only does Noah have Reactive Attachment Disorder, but as is often the case with RAD children, he has a chemical imbalance in his brain; a mental illness.

Sometimes I feel like Noah is an onion. We keep peeling away layers to try and find out just what is going on inside his brain. So much of it is trial and error. Speculation. Specialists seeing what they specialize in.

So as his parents we take in what the experts tell us, and then as the two people that know Noah the best, we consider, and ponder, and hope we are making the best choices and listening to the right people.

With each diagnosis, as we consider it, and whether we ultimately accept it or not, I grieve for him, for his future, and for our family. Because each diagnosis defines another layer of difficulty he is facing, and will likely continue to face, possibly for his entire life.

To hear your 7 year old child say he does not want to live is almost beyond description. Knowing adults with bipolar disorder and hearing their stories makes me fear even more.

Until now we have worried about Noah's future. Worried about his impulsiveness, his learning difficulties, his difficulties socially. But we never worried for his life. That is a door that has now been opened.

You bring a child into your life, whether by birth or adoption, and you dream about their future. You wish for them a good life, a happy life, a stable life. A life where when they are an adult, with a family of their own, you are there for them, but more as an equal, a friend, than as a caregiver.

When you have a child with a mental illness it is hard not to worry about that future. Will he be more susceptible to drug or alcohol abuse. Will he be able to hold a job. Will he continue to take his medication, and recognize when he needs help.

And what if he doesn't?

You hear of families that have given up on their children for far less. Personally, I can't imagine ever giving up on Noah. But I'll be honest, a life with a child, or even an adult child, with a mental illness like bipolar disorder was not in that fairy tale I created in my mind when we became a family.

I suppose to some it sounds dramatic, but I fear for his life now. 

As a pharmacist I have always been especially interested in psychiatry. I grew up with a mother that suffered with depression and anxiety since my early teen years. Depression runs strong in that side of my family, and it didn't pass me by.

But the intensity in Noah's emotions is far scarier than anything I have dealt with myself.

I'm not giving up hope. We will continue to provide Noah with every intervention and therapy possible. And I will continue to hope that his psychiatrist is correct when he tells us that by regulating Noah's brain chemistry now there is a chance he won't need medication as an adult.

And I will continue to worry. Because I am his mother, and I love him beyond description.

This is an inspired post written for the "From Left to Write" Book Club. A copy of The Swan Thieves was provided to me by the publishers. I am not being compensated for this post and all opinions are my own.

New Rule - No cutting off of fingers

I find having good, solid rules in our house work best. 

Rules like:

• No TV or computer before homework is completed.
• If you don't pick up your Lego's before I vacuum I will suck them up.
• Love your brother, he's the only one you have.
• Don't ride the cat like a horse.

And now - No cutting off of fingers.

Last week Noah tried to cut off Kiel's thumb with a cigar cutter.

Kind of like this one. Guillotine style. 

It took me a while to figure out what exactly had happened. Once I dealt with the blood and determined that although Kiel's thumb nail was cut through, he was not in fact going to lose any digits, Noah did answer my questions.  

It still wasn't making sense to me so I told Noah to go and get whatever it was that made Kiel bleed.

And then I realized. Chop. Off with his thumb.

Noah thought it would be interesting to see what would happen. And Kiel, who idolizes Noah, did exactly what Noah asked him to do. 

Noah has shown a lot of remorse over the incident, although I still don't think he understands how serious it could have been.

I guess I should be thankful it wasn't some other appendage he was told to put in there.

So yes, we have a new rule - No cutting off of fingers.

Remember when I wrote this post last week about how fast Noah's mind and body were going?

Well, it's taken me some time to be able to come back and tell you about the aftermath. I needed some time to process, and to decide if I should be writing it here or not. That part I'll discuss a little later.*

Noah was in what I believe is a manic state, or perhaps a hypomanic state. Everything was running fast. He was mostly pleasant, but you could tell it wouldn't take much to push him over to the edge of anger. And it happened. He went from enjoying the first night of Hanukkah to raging and screaming, throwing and kicking. Like a switch was turned on. He alternated between the raging and aggression with hysterical crying, during which he was hiding in the bathtub or his bedroom closet. During those time he told us several times he wanted to die, that he was an idiot, that he shouldn't be in this family, that he was a looser and someone please give him a knife so he can kill himself.

It was the most gut wrenching, horrifying thing I have ever heard. My boy, who is not even eight yet, saying he wanted to die.

We were trying to take him off one of his medications. Obviously that wasn't going to work. We are slowly tapering him back up. He is doing better this week, but is still quick to frustration. It's like walking on egg shells around him. It's exhausting and frustrating. I worry for him, for his future.

*I'm considering starting another blog that would be password protected. I no longer feel safe writing here, and I haven't for a year. My writing has changed because of that and I know I have lost readers. But most important for me, because I've changed what I write, I've lost a big part of my place to work through things.

I think I'll keep this blog and just put the more emotional posts in a password protected one. I need to figure out how to go about it so that those that I want to read get the password.

Anyone else gone this direction? Thoughts? Regrets?

A Christmas Tree Decorating Poll

If you have kids and a Christmas tree, please answer the following poll.

When decorating your Christmas tree you:

A.  leave everything exactly where your kids hang it, even if 2/3 of the ornaments are on the same 1/7 of the tree. You would never do anything to stifle their creative nature, right?

B.  let your kids have their fun then go back and rearrange things when they aren't looking. You don't want to hurt their feelings, but damn, 2/3 of the ornaments on the same 1/7 of the tree is lopsided and makes you a bit twitchy.

C.  carefully direct the placement of each ornament. Thank goodness you have kids that actually listen and follow directions, right?

D.  convince the children that there is a tree decorating fairy and one morning they will wake up and magically the tree will be decorated, then you do it yourself after they are asleep. Because OMFG, 2/3 of the ornaments on the same 1/7 of the tree! Do I need to say anymore?

E. ornaments? Are you crazy? My monsters broke all of ours ages ago.


My careful calculations tell me that I have approximately 33 regular readers. So I'm expecting 33 responses in my comments. 'mkay?