And finally - I bring you the NOW

I promised you an update weeks ago and clearly my follow through sucks.

The concise version is that Noah is doing so much better.

The longer version starts with Noah being discharged from the hospital after 22 days. He wasn't really better, he was just different. His emotions were back. All of them, not just anger. He wanted to come home. The next step typically would be a week or two of outpatient treatment, but he did a trial  run that went spectacularly awful for him and he refused to go back. So he jumped right back into school.

I had a meeting with the school before he went back and made many demands requests, most of which they put in place. It was interesting how they were finally taking Noah's needs and my concerns seriously.

Noah was back. He was happy. He had a full range of emotions again. But he was still so fast. Too fast. Exhausting to those around him fast. His speech, his body, his thoughts. All too fast!

But he was happy. And he hadn't had a single motor or vocal tic since he left the hospital. A lot of medication changes had been made and we were trying to keep him off stimulants because of the tics and the anger.

School was trying hard to work with him and help him be successful. They finally put regular/consistent movement breaks into his schedule. They put an exercise bike into his class room. Each kid was given a laminated pass kept at their desk to use if they needed a break. They changed the aid that was working with him from a stern grandmotherly woman to a young male. And they gave him his own bus to ride home in each afternoon. (Did I ever tell you about his afternoon bus driver and aid for the first part of his year? Oy, disaster.)

All great stuff. Yet he was still struggling. His point sheet that they use to monitor his behavior throughout the day was coming home with similar numbers as before the hospital. It was obvious Noah was trying, and the school was trying, but he was still struggling - behaviorally and academically.

At home things were better, but his speed was causing big problems. It really was exhausting being with him. He never stopped talking or moving. He had very little concept of where his body was in space, so things got knocked down around him all the time. He really struggled with Kiel too. Lots of jealousy going on there.

This went on for several weeks until one weekend when Rich was working. By 10am I was ready to lose my mind listening to Noah, especially how he was terrorizing interacting with Kiel, which meant Kiel as crying every other minute. So I caved and gave Noah a half dose of the stimulant that he was on prior to the hospital.

OMG People! It was like a magic pill. Within an hour he was able to have a real conversation. He was interacting appropriately with Kiel. He even told me that he felt better in his head, which was a first!

We sent him to school on that dose the next Monday and his teacher called midday to ask me who I sent to school because the kid that looked like Noah was amazing.

It continued for the rest of the school year. Just like that he was bringing home point sheets with 99's and 100's, instead of 75's and 80's. And even better he was learning again!

This summer I hired a college student to work with him 32 hours a week when I'm at work. It worked out very well and Noah enjoyed being with her every day. They played lots of basketball and went bowling almost every day. I had hoped they would spread their wings a bit and try some new things, go on some different adventures together, but Noah's anxiety is still an issue, and he preferred staying close to home or doing things he was comfortable with already. I did send both boys to a week of soccer camp (locally run, 9-1) in both July and August. Noah did well the first week, but struggled the second with his anxiety. Overall it was a good summer for Noah.

Right now it's the end of August and we have ten days until school starts. He's nervous about starting sixth grade, which he has told me several times. Soccer season has already started and he struggled going to the first practice but once he got into it he did fine. He did fine the next practice, but then fell apart at the first academy practice. Too many kids and the commands were too fast and too many steps. He was so afraid he was going to embarrass himself that he froze and refused to participate.

So that's where we are right now. Gearing up for school, worrying about his anxiety, hoping we can still keep soccer his positive place.

Maybe next time I'll write about something totally not related to Noah. How novel...




 

Too funny not to share!

An email from Noah's teacher last week.

 -------- Original message --------
From: awesome teacher
Date: 10/25/2013 1:31 PM (GMT-05:00)
To: Noah's mom
Subject: umm...help! :)

So…I’m literally laughing out loud while typing this.  We talk about some things that Noah does that just are too funny to get mad about.  I have one for you. 

Noah just came in from recess and I thought perhaps he ate something poisonous because he is running around like he is on speed and talking so quickly that its hard to even make out what he is saying right now.  when I asked him if he felt ok he replied, “yes…I feel like I just had a whole roll of gum with red dye in it that I snuck in from home and snuck out to recess with and ate the whole thing”.  He said this as he went into his backpack and then threw the empty package of gum at me (threw in a fun way throw and catch way, not aggressive). 

Any suggestions or should I just let him run on a hamster wheel (or some sensory based activities) for a while?!

As I’m typing this he is dancing and singing…shaking his butt like nothing I’ve ever seen before!!!  I have to admit…he is hilarious right now!   

Obviously I need to check the labels on the Halloween candy better.

I should probably find a new hiding place too.


 

Pulling back and reconnecting

I wrote this post several weeks ago. I needed it to sit for a while to make sure I was ready to post it. I think it's ready now.

Parenting is hard. It just is, and there is no way to really prepare for it. You jump in and hope you swim. Fortunately, Rich and I have managed to keep our heads above water, despite some very deep water and long periods of doggy paddling. Occasionally we have needed some help and managed to grab on to some floaty devices at just the right time.

I've learned from every wave we have managed to navigate ourselves through. I've learned to float when I can, but always have lungs full of air just in case.

And I think maybe I got a little over confident.

Amidst juggling Noah's medical needs, his academic needs, and his physical needs, I think I forgot about his emotional needs.


We had a pretty good summer, and his transition into fourth grade and a new school overall went smoothly (on the Noah scale of smoothness anyway). Soccer was great in the fall and although it took lots of encouragement he's loving playing basketball this winter. We've seen improvement with his reading, and he's keeping up in math. He even received an A in science last marking period and a B in social studies.

He has an amazing emotional support teacher and overall the school is very supportive of him. There were bumps to be sure, but overall we have been so proud of him.

While I am always thinking about what is coming up next and what more we should be doing for him, I let us float the last few months. We received the results of his neuropsych testing from the FASD clinic the end of October. It included several recommendations, medical and academic, that I was very slowly chipping away at, but not with any urgency. Mostly I was enjoying not feeling like we were always being chased by the shark.

Looking back, I think things started to change in November. Perhaps it was Kiel's birthday. Or the month of disrupted school attendance due to super storm Sandy and then school holidays around Thanksgiving. Or maybe it wasn't any of that.

What I do know is that Noah started to struggle a little more, both at school and at home. He created more chaos at home, got into more things around the house we thought he knew he shouldn't. He was plugging up the toilet again, the encopresis was back and I felt like poop was everywhere. He was taking longer to do homework and was almost impossible to keep focused.

He started picking his nose again and washing his hands obsessively. And new motor tics started in his arms and neck. 

It was getting to the point where I didn't trust him out of my site. Too many times he created chaos in minutes. Some of it dangerous. I questioned if I could keep him safe.

He was mouthier and brattier and ruder than ever. And so incredibly oppositional.

Words were said that should never been spoken. 

I was frustrated. Rich was frustrated. The things we used to handle OK started to drive us crazy.

And then we have Kiel. He turned five. He's sleeping in his own room (finally). I'm able to spend more time alone with him and LOVE our Mommy-Kiel days. He's a sweet, funny kid that loves to cuddle. He tells me a hundred times a day (if not more) that he loves me and that I'm his best mom ever. He's the best of everything a five year old little boy can be.

I love both my boys intensely, fiercely, with a depth I never imagined was possible. But the truth is that I like Kiel far more than I like Noah the last couple months.

Looking back, I realize it's an insidious, horrible pattern. The more frustrated we became, the more Noah acted out. The more he acted out, the more frustrated we became. More frustration, more yelling, more rudeness, more acting out.

He was in trouble all the time. And while I was saying we can't let this continue, I was handling it more like a a strict no-nonsense parent, than the therapeutic parent he needed. The parent that understood why he struggled.

He had several rough days at school this week, and on Wednesday he hit a new low. On Tuesday he was in trouble for rhyming "stick" and "dick" (except he didn't know what "dick" meant so didn't understand why he was in trouble) and because he ate like a dog at lunch (except it was like a pig and he can't believe they didn't know that). Wednesday at recess he jumped the property line fence (because they were playing chase and he was running away from the kid that was "it."), he was removed from art class, and screamed at his aid, his general ed teacher, and his ES teacher; all before 1pm.

When he walked in the door that afternoon his first words were "I had the worst day ever."

Those words changed something in me.

Instead of consequences, I gave him a big hug and told him I loved him and it was OK.

We sat on the couch together and I held him.  I asked him if he knew how much I loved him.

He told me "no."

Those words broke my heart. How had I let it come to this? How did I let him get to the point that he questioned my love for him?

You can't fix everything with love, but you are going to find it much harder to fix anything without it.

We talked and cuddled. We reconnected physically. I'm not sure the last time I sat with him like that was.

Before bed we sat on the couch together again. The hour between dinner and bed had been rocky. I could see a physical difference in him. He was more settled when we were together on the couch. Now he looked angry, and sad.

We sat together, although he wouldn't cuddle then, and I asked him why he was so sad. I wouldn't let it go. He covered himself, including his face, with a blanket. He didn't want to talk. He said he didn't know how to say it. He didn't know the words. I pushed a little more.

Finally he said "it's you and Dad." He didn't say much more than that, but I didn't need to hear more. The pieces were coming together.

I know I had pulled back from him. I know things were said that made him question the stability of his life here. I know he felt misunderstood.

He was in trouble all the time and more often than not he didn't understand why what he did was wrong, or couldn't understand why it was such a big deal. It wasn't like he planned on doing those things.

While I could tell other people that he had brain damage and it affected his impulse control and ability to connect actions with consequences, I wasn't using that knowledge as I parented him.

We talked. I made it very clear how much we love him. I apologized for my poor behavior. We talked about how we could both make it better. I reminded him that my job as his mother was to keep him safe, to raise him to be a good adult, to teach him how to be a good person, a good husband, a good father in the future. We talked about how the older I get the more I learn, and that when you are only almost ten you know a lot less than your parents, and that is why sometimes you just have to accept that mom and dad are in charge and even if you don't always like it you have to do what you are told. I'm sure I said far more than he could absorb. It seemed to work though.

Rich put him to bed with a quick whisper from me that he needed to reconnect and I would explain later.

I shared with Rich and made it very clear that we both needed to rethink how we were parenting because what we were doing was breaking Noah.

Noah went to school Thursday morning with a smile on his face. He told me he was going to have a great day. I emailed his teacher to tell him what I thought was going on, especially that I thought he was feeling misunderstood.

His teacher sent me this picture in the morning and said "This is the Noah I know!"

He had a perfect behavior day on Thursday. He also participated in his first after-school basketball program and did great. He was SO EXCITED when he came out of the gym to tell me he received a 100 points (perfect day). He was a different kid than the one we had been living with the last two months.

Sometimes I forget just how easy it is to screw up as a parent. Sometimes I lose sight of why this gig is so important. Sometimes I need reminders, like the sweet, silly face of this boy.

The dreaded parent-teacher conference

Noah's parent-teacher conference is tomorrow. I dread these conferences. It's not that they are all that different from any other meeting we have about Noah, it's just that these are focused solely on his academics, and time is limited. And as you know academics aren't Noah's strong point.

This meeting is only 20 minutes long (seriously, how can you have a real discussion about a child's academic progress in 20 minutes?) and will also include his regular education teacher. I know there won't be much we can discuss in 20 minutes. Hell, I don't think I've ever had a phone call regarding Noah that has only lasted 20 minutes.

However, for the first time, I'm not really dreading tomorrows conference.  I feel like I know more about Noah's academic progress this year than I ever have before. His teacher and I have been in frequent contact.

Noah's teacher this year is amazing. Truly amazing.

He is so in sync with Noah and really sees the potential in him. It's because of him that we are starting to see academic progress, especially in reading. 

School this year is different. New school, new teacher, new administration, different expectations. 

And with Noah we are seeing more maturity. 

And we seem to have him on a better medication regimen than ever before.

So behavior issues at school are less of an issue than they ever have been. They haven't gone away, and when he does have problems they tend to be more significant than before, but they are no longer constant.

When the teachers aren't constantly struggling with behavior issues they can actually take time to teach. 

And this, is AWESOME!

So we have a child that is now able to access the academic process, and a teacher that is willing to do anything to help this child, and we are seeing progress.

I'm not expecting a p-t conference for an all A child, but I do expect to hear some positives. I like positives! I need to hear positives.

And maybe, just maybe, we will eventually teach this kid to read.