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!