Navigating Early Intervention

“Do you know how lucky we are?” Z asked me as we drove toward the school where we would receive the results from C’s Early Intervention Evaluation. “Seven highly trained adults. Seven. Gave him their full attention for two and a half hours this morning.”

“I know. I know you are right. I know.”

“We are so lucky, so privileged to have access to this kind of help for him.”

“Yes. We are.”

I had told him I was sick to my stomach over getting the results of the evaluation. We spent the morning sitting behind a two way mirror observing his test while answering hundreds of questions about him.

We watched the meltdown he had an hour into the test. They redirected him and got him back on track. We watched as he was able to focus. We watched him eat his snack and get back to testing and we watched him fade until he was asked if he was all done. “All done.” he replied firmly.

Midway through the process one of the evaluators came into the observation room and mentioned Sensory Issues and I froze as dread crept up my spine. After she left I found myself standing and delivering a wild and nonsensical monologue to another woman in the room that touched on over-diagnosis and over-medication of ADHD (not even the reason we were there) and how if you look at any kid long enough you start to see something wrong with them.

Before the outburst I’d told myself I’d stay cool. We were doing what was best for C and that is what mattered. This whole thing was not a value judgment on him or on our parenting.

And yet, suddenly I was the parent who did not want to hear it.

Looking back on the last year I realized I never wanted to hear it. Every time I explained to someone that C received speech therapy I would casually explain that he had terrible ear infections and health problems when his speech should have been developing. I’d slip in that he tested normal in all other areas. Except I’m realizing now I wasn’t casual at all. I’m sure that I seemed oblivious and petty and desperate.

The emotions aren’t new. The fear, guilt, defensiveness, and worry. How could I not be able to teach my kid to meet developmental milestones? What is wrong with my parenting? Is this my fault? And there is a stigma for services. How the hell do I get over my own embarrassment so I can teach C he has nothing to be ashamed of?

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In New York the Early Intervention provider switches from the state for two year olds to the local school system for three year olds. So another set of standardized tests are performed. During the week leading up to the test he was observed in his preschool classroom. Wednesday a Professor from SU and two of her graduate students spent an hour and a half in our home watching C play and asking me tons of questions. Thursday he had a three hour block, just him and the testers. He didn’t make it to three hours. After two and a half little man was so exhausted he napped for nearly three hours in the afternoon.

This process is important. But man, it is overwhelming both for him and for Z and me. Watching your not-quite-three year old be put through a multi-hour standardized test sucks even if there are some play breaks. By the end it just felt unfair and cruel.

—————————————–

Z and I sat at the head of a conference table, surrounded by the seven professionals who tested our boy and listened to the results. Most of which were in the normal range. But there were new concerns about coping when he becomes frustrated. The only area he scored below normal was the emotional piece, the area he’d had the highest score in the fall.

In the past year his speech has exploded. We were shocked to find he scored average and slightly above average in the two speech components. His clarity is poor enough that we think the school system will grant continued service and we hope they do. He is not at the same level with his peers concerning speech no matter what the tests say. A year later we have learned Early Intervention works. It works. His therapist has been amazing with him. His improvement is due to many factors, but she is one of the most significant.

During the meeting it was clear I was struggling. When his low emotional score was disclosed I couldn’t help myself, I asked what I’d done wrong. How could he have improved so much in one section while falling behind in another?

One of the kind evaluators pointed out that these areas of development do not progress in a straight line. There are fits and starts.

Hopefully C will continue the speech therapy. It is up to us to decide what to do about the other piece. Do we want to see how he does for a year without extra services? Do we want to just deal with this now?

Z and I are on the same page. We want what is best for our beautiful and wonderful and loving boy. I was sure he’d qualify for speech and nothing else. I know my kid. I know him.

It is awful to spend a morning learning that your child, your heart, your love, hell — your job is struggling in an area and you were completely oblivious. The doubt has crept in, if I didn’t know this about him what else am I missing? Does he deserve better than me? Is this the ultimate stay at home mom job evaluation and did I just fail?

Z was right when we drove to the meeting. We are so lucky. C is so lucky. Yes, these services are free. But the process is involved. We have the resources to send our boys to a preschool that made us aware of Early Intervention and helped guide us through it. How many parents out there don’t have the resources or time or knowledge to discover that this is an option? How many parents are so busy working to provide a home and enough food for their child that they don’t know there is an issue with the kid until he or she reaches kindergarten? How to we help get these resources into the hands of families that need them every bit as much as we do?

I don’t know. But I do know that I need to be grateful. I must stop wallowing about how hard this is for me. It is a waste of time to obsess over my failings as a mother. C needs help. Z and I will make sure that he gets it.

beautiful c

This boy. He’s going to be more than fine. Photo by Ellie Leonardsmith.

Who Is the Real Butthead?

“I offered him a Hershey’s Kiss and he said he couldn’t have one because he lost his treat.” my friend J told me.

“Man, I love that T is incapable of lying.”

“I asked him why he lost his treat and he told me he called you a fool.”

“Yup. Last night when I was putting him to bed. He was mad at Z. I don’t think he understood exactly what it meant. Or that he would be in so much trouble.”

This conversation happened moments before J’s husband discovered that C was evacuating his bladder and bowels hidden by my car’s driver side door.

While we were chatting I could smell myself. I didn’t get the chance to shower today and my year-old flip flops reek with an odor that can only be described as evil.

It has not been a banner day.

Z’s sister E and our niece G left this morning. We had a great visit with them, and the good news is we will see them again next month. But the thing about sharing a living space with guests is you start to see how you and your kids are acting with fresh eyes.

My fresh eyes are pretty embarrassed by what they saw. All I do is yell at the boys. All they do is give me the metaphorical finger. Thank god they haven’t learned how to give me the literal finger yet, but I’m sure it is coming.

Back when I was a fantastic mother (you know, before I actually had children) I knew I would not stand for disrespect from my kids. Man, I knew so much back then, so very much. I was so self righteous, so smart, so incredibly full of shit.

At nearly five and nearly three my boys are raging buttheads.

Nearly five years into parenting there are still days when I don’t get around to bathing.

For the life of my I cannot figure out how to potty train my nearly three year old. Today included one pee in the potty, two pees on the floor, countless trips to the bathroom in which nothing happened, and as mentioned, my friend C finding him leaning against my car with one hand as he pissed, a gigantic turd dangling between his legs like a tail. Thankfully grown up C convinced three year old C to squat on the ground until the poop broke away and fell to the driveway where it was immediately swarmed by flies. But then T ran behind the car and stepped right in the shit.

Some days parenting feels like I’ve crested the top of a roller coaster, like my stomach has fallen through my feet as the tiny car that holds me plummets back to the ground. But I never level out, I just keep falling and falling while feeling more and more out of control.

My boys are not quite five and three. If they are buttheads it isn’t their fault. Which leads me to some pretty uncomfortable conclusions about my job performance.

T and turbo

See this adorable photo? Taken moments after T kissed the damn snail and hours before he’d call me a fool.

t pic of c pic of t

See this adorable photo? Taken by T of C taking a photo of T. Very meta. Taken moments before an epic physical altercation between the boys over who got to play with the playmobil dude wearing the black outfit.

leonard cousins goodbye

See this adorable photo? Cousins saying goodbye? In the next photo I snapped it looked like T was trying to pull off a chunk of C’s flesh.

The Bitch is Back

At three miles and change my throat felt full and I dry heaved a little. Home was over a mile away. I’d run almost two and a half miles away from the house to force myself into doing 5. It was a punishment run to make up for a shitty performance the day before. And instead of finishing I had a long, slow walk of shame back to the house. The best thing that can be said is I didn’t cry.

Earlier this week another mom in C’s preschool class who is an accomplished runner and I were chatting because we were both geared up for a run. I told her I was doing speed work. “By yourself?” she asked. “Yup.” I replied. “Wow.” she said, clearly impressed.

I felt like a total fraud. Here is what I wanted to blurt out: “I get so anxious when I’m doing a challenging workout that I don’t sleep well the night before and have hideous diarrhea up until the moment I actually get out the door. Yes, I have performance anxiety without an audience. If I actually had to do speed work in front of other humans I would probably shit out an organ.”

I’ve been working on not saying the crap that would make near strangers horrifically uncomfortable. Pat on the back, Karen. Instead of that word vomit, my tongue was bitten and I vaguely mumbled something.

The October Half Marathon? I’m not going to be doing those 13.1 miles in a vacuum. In fact, one of my best friends in the world signed up so we could tackle it for the first time together. She and her family came up from Brooklyn to spend the weekend with us and help us celebrate Z’s birthday on Saturday night.

On Sunday we went for a run together. I was so anxious I almost shit out an organ beforehand. I was so anxious I was running about a minute slower than usual. I’ve been assured by many that running with a partner is great fun. You get to chat and the time flies by. Um, right. I huff and puff with such vigor that I was unable to string more than three words together. Man, I was disappointed in myself. I felt awful for my friend who wasn’t getting much of a workout at all. It was humiliating.

Thankfully my friend loves me no matter what. She knows about the anxiety. As usual, she was nothing but kind to me. That bitch anxiety did not have A’s lovely manners. She told me I was an embarrassing, pathetic mess. She lied and said that A was regretting signing up for the half with me. She told me no matter how great life was right now that she would dog me for the rest of my life.

Unfortunately that part is true. Life is going well for our family, we are in a good place. But I am overwhelmed and ashamed of how my anxiety colors everything. Leaving the house is still hard every day. Why do we have cook outs in our backyard? So it’s guaranteed I’ll attend. Our friends have been so accommodating about letting us host, but I still feel terrible about it.

Z has a work fundraising event on Thursday. I’m already spun up about what an awkward fool I’ll be there. Yesterday my friend’s family and ours went to the Zoo. I managed to have a pretty bad anxiety event there. Last week I had to cancel my therapy appointment due to a babysitting snafu. I’m sick to my stomach over the makeup appointment on Wednesday because I feel so guilty about canceling and I just don’t want to face my therapist’s disappointment. And let’s not get started on the nausea I feel when remembering the panel I’m on at my first academic conference in June.

How ridiculous is all of that? What a staggering waste of time.

That’s what an anxiety disorder is. A sickening waste of time that makes you feel like a failure and a disappointment.

But here’s the thing. I will not let this fucking thing own me. I will not. Tomorrow is a rest day, but I will be back out there running on Wednesday. And Thursday. And Friday. I will go to Z’s work event on Thursday. I’ll drag my ass to therapy on Wednesday. And even if it takes all the Imodium on the eastern seaboard I will be a part of the fucking panel at the conference. Goddammit, I am doing a half marathon in October.

That bitch anxiety might be with me for the rest of my life. But I will not let her destroy me. I will not.

a and k post run

Still managed a smile at the end of the jog o shame.

sad and lovely elephant

Sad and lovely elephant we got to touch at the zoo. Her name is Siri.

luke fights palpatine

Luke Skywalker and Emperor Palpatine battling in the Death Star.

 

 

Who You Are

“So how do you feel?”

“Better. Good. I mean, I still cry a half dozen times a day…”

“What makes you cry?”

“Oh, you know. News stories. Stuff I read on the web. Every single time I watch Frozen.”

“But that is just who you are.”

It was a throwaway comment on the part of my therapist. At the moment I didn’t realize how much it would affect me. “That is just who you are.” The new medication is going well. And yet I am still who I am. What a tremendous relief.

One of the reasons the mentally ill are loathe to try drugs is because they don’t want to become someone else. They don’t avoid drugs because they think that their crazy defines them, or makes them unique, or gets them attention which are the reasons a lot of people assume are behind drug reticence. It is because they don’t want to lose who they have been at their core for their entire lives. I don’t want to lose who I am. It’s not like I’m so fabulous. But I’ve been me for 37 years. I’m used to myself.

With the right drug/s (and yes, finding the right drug/s can be a mighty struggle) you are still yourself. Just a functioning version of yourself.

Yesterday this post about a mother’s internal struggle with medicating her 10 year old who needed help showed up in my facebook feed. My heart ached for the anonymous author and for her son. As someone who needs drugs to function and sometimes to survive, as someone who worries I have passed my anxiety along to one of my sweet sons, I viscerally empathize with her.

At the same time I felt sick to my stomach by the time I finished the piece. I felt embarrassed and defensive and angry and hurt.

How do you give your child a controlled substance, addictive drugs, and act like it’s a normal thing to do?” she asks. She writes with brutal honesty about her struggle and I admire the hell out of her for it. But that question made me feel small and broken. I take an addictive controlled substance. I have every day for over a year. It is normal for me. I mean, what the fuck is normal anyway?

This mother. She is thoughtful, she is doing whatever needs to be done. “But on the other hand, how do you not try everything in your power to help your child who struggles every day of his life with demons you cannot beat down through sheer force of will and all the therapy money can buy?

Part of what hurts so deeply about the piece is she nailed it. All of it. How frightening and awful mental disorders can be. The fact that resorting to drugs makes you feel like a failure.

Psychotropic medication is a land mine of a topic. Controversy surrounding the over medication and diagnosis of kids with ADHD or adults with depression is well documented. And anecdotally who among those of us who went to college in the 90s or 00s didn’t know a dozen people who were given prozac at health services? The issue is real and a concern, but that isn’t what I’m talking about here.

I have mild asthma. When I occasionally have an asthma attack I use my inhaler and my attack stops. Every night I take a pill for my asthma/allergies. It effectively prevents attacks from happening the vast majority of the time. In fact, it is so effective that I started to believe I was taking it unnecessarily and let my prescription lapse. Two nights later I woke gasping for breath in the middle of an attack.

Brain drugs don’t work that way. Each brain responds differently to the type of drug, the amount, the time of day taken. And many drugs are prescribed off label, which means not for the use they were approved for originally. We just don’t know as much about the brain as we know about asthma.

Beyond the clusterfuck of finding the right drug is the fact that even if you have struggled with mental illness for years you have the nagging thought that you aren’t really unwell. You are just lazy and a coward. Progress is being made, but the idea that you should pull yourself up by your bootstraps and simply stop being sad or anxious or manic is prevalent in our society. Self loathing goes right along with many mental illnesses and it is hard not to buy into that, hard not to believe that you are making it all up.

And then there is the “what did I do wrong?” or “this is my fault” component.

During my lifetime I hope we get to the point where being treated with drugs for a mental illness is destigmatized and perceived as “normal” as using an inhaler for asthma. I hope it for the mother who wrote about her son, I hope it for that boy who is struggling, I hope it for myself.

mothers day

My sweet T and me on Mother’s Day.

c cow

Z took the boys to a big truck event at a local park yesterday.

t truck

T looks like a different kid with his short hair.

2 and 4

Two and Four for a little while longer. 2 wouldn’t look at the camera and 4 is doing all sorts of poses for the camera these days.

 

When Motherhood Can Bite Me

C is nearing 3. The age when T actually grew horns. T’s 4th year has been so great it has sort of erased some of the horror of his 3rd year from our memory. But the fog is lifting and we are starting to remember how rough T was. Um, yeah, we actually decided that we weren’t going to have a third kid when T was three.

The whole terrible twos thing is a joke. At least for our kids. Three is a fucking beast of an age. I get it that sucks for the kid as well. Three year olds are desperately trying to assert their independence while scrabbling for a modicum of control over their lives. They are told no all day long. They are expected to start behaving themselves at preschool and in public. So they rebel.

C was exhausted after school. So he refused to nap. Therefore he was an absolute delight at Wegmans. By which I mean he was a raging asshole to the woman who checked us out and was trying really hard to be nice to him. T had a T-ball game tonight. Z is in Baltimore overnight so I was flying solo. Naturally I got us lost on the way to the game. Naturally C screamed, “NO! NO! NO!” every time I asked him to do something or tried to prevent him from doing stuff he shouldn’t have been doing. Let me tell you, that kid can scream. If I picked him up he’d scratch at my face or hit me.

We are doing a fantastic job raising our little gentlemen.

Actually, it’s pretty humiliating. I feel like everyone must think I’m the shittiest mom in the world when he throws tantrums in public. Sometimes I am scared to take him places he is such a loose cannon.

The game mercifully ended and we headed home. C was drinking a juice box, his newest fascination. T doesn’t like juice boxes so we don’t have them hanging around. Now, let’s be real. I shouldn’t have trusted him to have the box in the car. Sure enough and with T’s encouragement I caught him spraying juice everywhere.

Finally we were back home, the juice got cleaned up, I called Z so he could say goodnight to the boys. I sank into the sofa, not really paying attention to what C was doing.

I felt an explosion of pain on the side of my face.

C climbed on the arm of the sofa, turned around, and basically trust falled the back of his skull into my cheekbone.

So here is what I learned about motherhood today. Sometimes you are so mad at your kid you have trouble looking them in the face. Sometimes you are embarrassed because you know tomorrow morning you are going to have a prominent shiner that you will have to explain to the world. Sometimes you are fed up and exhausted and want to scream, “FUCK YOU CHILDREN! FUCK YOU! PUT YOURSELVES TO BED GOD DAMN IT! I’M GOING TO THE BAR FOR A DRINK OR SIX!”

And I’m a little ashamed to admit how hard this was for me. With difficulty I didn’t scream at him. Instead I bathed him, read to him, sang to him, and cuddled with him. I wanted to just dump C in his room and walk away. But I explained why I was upset that he hurt me (and I understand he was not actively trying to bust up my face, he probably thought he’d fall in my lap). Then we did stories and songs and cuddles like usual. Did I have to fake it? Um, yes. Did I want to be vindictive and deny him his routine? Um, yes. My face really hurt and the day was really shitty.

What I learned tonight is when you are alone with the kids it doesn’t matter what happens. You have to keep it together and be a mom. Now, you wise folks probably figured that out ages ago. I’m slow. And selfish. But I did it tonight. I didn’t do it gracefully. There might have been some serious muttering under my breath.

But I did it. Maybe I don’t get a gold star today. At least I didn’t fail.

photo (33)

My cheekbone doesn’t usually look like you could use it to cut glass.

IMG_1963

This is what T was doing in Baltimore. Pretty fucking amazing.

IMG_1962

Process shot. And Pain shot. I’d never have enough courage to do ribs. My dude is hard core.

Zoo at the Zoo

Couple of weeks ago I was taking one of those time wasting “what are you?” quizzes that have been all over facebook recently. A handful of questions and it tells you what color you are. Z was reading over my shoulder. As the curser hovered across the choices he’d say, “Oh come on. Obviously you’d nap if you got a free day to yourself!” or “Go to a party or spend a night alone? Please. Alone every time.” My biggest concern was that I’d get orange (for newer readers I have an orange-phobia), but nope. I got black. The description was something like “you are in a bad place, but it is temporary”. It’s a stupid online test that clearly has a problem with introverts. It isn’t real in any way. But it made me feel pretty awful.

Life has gotten better this spring. The seasonal affective disorder that colors the first months of the year has lifted. I’m on new meds that (fingers and toes crossed) seem to actually be working. School is over and I met my deadlines. I’ve been managing my anxiety through expectations-the trip to New York and the UN was hard. I knew it was going to be hard going in and was ready for it.

When we pulled into the Zoo parking lot this morning there they were. Six full sized school buses with a river of children pouring out of them. The parking lot was crowded with their parent’s cars. As we wound through the congested pathway towards the entrance my heart climbed out of my chest and into my throat. By the time we got to the octopus display my throat was squeezing shut, doing its best to crush my heart. My pulse raced, I was lightheaded, my eyes burned and filled with tears.

Our zoo is usually empty when it opens. I assumed it would be today. The crowds caught me off guard and triggered the first full on panic attack I’ve had in ages.

The funny thing is I’d been doing so well lately that the stupid voice in my head has piped up with her opinion. She seems to think there has never really been anything wrong with me. My mental illness is an excuse in my head to be lazy. I don’t really have trouble leaving the house or dealing with large groups. It’s a lie I tell to get out of stuff. Because I’m a terrible person.

This morning I was reminded that I really cannot handle crowds, especially when I’m not expecting them. Of course the voice just changed her tactics. She told me it was pathetic that I couldn’t deal with a couple of buses worth of kids. I kind of agree with her.

When C started crying in front of the octopus tank I was ready to grab the boys and get the hell out of there. Instead we stayed for more than an hour. I’m not saying I will win any mom of the year awards for that hour. I was short with the boys. The damn tingling in my arm that accompanies the lightheadedness never went away. I fought tears until we were safely back in the car. But the boys did get to run around a bit. And I didn’t give in to this stupid disorder.

t in k hat

He pulled the hat right off my head. Yup, it’s still chilly here in Syracuse.

cadbury creme egg

This beautiful kid can destroy a Cadbury Creme Egg.

Mom Hypocrisy

“Have you received the packet in the mail yet?” C’s speech therapist asked me. When kids in Early Intervention turn three they are re-evaluated not only to assess if they still qualify for services, but because care shifts from the state to the school district.

“Nope.” I replied, “The case worker said she wasn’t submitting it till the end of the month.”

“Ok. So when the time comes I suggest you ask that a teacher be part of the team performing the actual evaluation. You are allowed to do that.”

“Oh….Ok….”

“A teacher will be able to figure out if there are behavioral issues that qualify for services.”

I froze. And then I blinked back tears. And then I plastered a stupid grin on my face.

“Oh….Um…Do you think his behavioral issues aren’t typical?” This conversation happened after I unloaded on her about how incredibly difficult he has been in the last week.

“I’m not sure, that really isn’t my area. Why don’t you talk to the special ed teacher in his classroom at school?”

It was hard to make the call to Early Intervention late last summer. Hard to admit I couldn’t teach my kid to talk. Hard to admit he was behind his peers. Hard to get over my own prejudices about what it means to have a kid in Early Intervention. But C’s struggles with speech were not about me. The best option for him was to get him help.

It has been amazing. I am in love with Early Intervention. His speech therapist is absolutely amazing. We adore her and she has helped C so much. Dude is rocking the three word sentences. He initiates conversation. His Star Wars related vocabulary is bizarrely gigantic. Hell, he barely squeaked by to qualify for six more months of therapy when he was re-evaluated last month.

His issues tested as strictly communication based. All the professionals think he is late to talk due to his health problems and the ear infections that took place the winter he was about 18 months old. I was secretly relieved. He isn’t unintelligent. In all other areas he tests as a typical child including emotional life and relationships. We identified a problem and we got our kid help. Was it hard to take that step? Fuck yeah. But the reasons behind his delay were reassuring and made the whole situation easier to accept. And he is responding so well to the speech therapy–the proof was right there when he crawled into our bed a few mornings ago and said to me, “Mommy! Wake up!”

Well, I’m an asshole.

The reasons behind his delay were reassuring and made the whole situation easier to accept?

Seriously? Who the fuck do I think I am?

Turns out I’m ok with early intervention when he only needs it for communication. The mere suggestion that there might be behavior issues freaked me out, horrified me, embarrassed me.

Not my kid. My kid is normal.

The next morning I asked the special ed teacher about C’s behavior. Turns out she and the lead teacher had been talking about it that very day. C is hitting. C is scratching (that morning T went to class with two wicked welts slashed across his neck care of his little brother).

Fuck.

The special ed teacher feels it is linked to the frustration that has accompanied his communication issues. He can’t ask for his turn fast enough when he is with his peers. He can’t speak up for himself before the conversation has moved forward.

The thoughts running through my head make me even more ashamed. I can’t bear to have my kid be a hitter. I can’t wrap my mind around having a kid with behavioral problems. Didn’t I always swear my kids would be respectful and well behaved? Me! Me! Me!

This is not about me. Duh. Obviously. DO YOU HEAR THAT KAREN?

This is not about me. This is about C and what he needs. This is about following through with our beliefs. Since C has been in early intervention I have self righteously said many times that if parents know their kid is behind developmentally or behaviorally they are making a costly mistake by not getting them help. Service are free for god’s sake. Who cares about labels, just get your kid help.

Who cares about labels? Evidently I do.

C deserves better.

Perhaps I should climb off my high horse.

Yes, we will make sure C is tested for behavioral issues. It is the right thing to do for him. But I will have that fake and rather alarming smile plastered to my face the whole time.

The team surrounding C both in school and in services is extraordinary. He is so lucky to be in a situation in which so many qualified and compassionate professionals have his best interests at heart. I am grateful to each one of them. And I could learn so much from them.

This early intervention thing is still surrounded with stigma. There is the worry that if you were a better parent your kid wouldn’t need them. Entering services is an admission that your family is not perfect. We look at the other families that do appear to be perfect, but we have no idea what goes on in their homes. That they might be looking at other families just as enviously as we look at them. And we can’t remember that perfection does not exist. The pressure our generation puts on itself to be perfect at this parenting gig is toxic.

Once again I find myself lacking as a Mom. Once again I vow to try and do better, to be the mother that my boy deserves. Jesus fucking christ this is hard. But those two boys of mine, they are worth every single moment.

c hugs yoda

He has so much love in him. We are going to keep working with him to get him on track with communication, and if he gets help from the school system for behavioral issues we will embrace it. His needs are what matters.

the other one

The other one. When T was sick with strep last week he and I were hard core cuddling on the sofa. He looked at me and said, “I think our family is perfect.” He was right. We might not be perfect in the textbook sense. But we are perfect for us. I wouldn’t trade my boys for anyone. And I still feel lucky to be married to Z. Perfect for us. The new definition of perfect.

Back in the Saddle

If you’ve been kind enough to read here for a long time you’ve basically read this before. If you are my friend you have heard this before. I’m bored with this subject even before I begin writing…

The anxiety is really bad.

I’m having a hard time.

I hate myself.

I’m ashamed that I need drugs to function as a human being.

I feel like a bad example for my boys.

I feel guilty for occupying space in this world.

Someone as privileged as I am does not deserve to have a mental illness.

I’m trying a new drug.

Are you yawning yet?

I’m not doing very well. But the flipside is I’m kind of fine.

I’m taking care of the boys. I’m keeping up with my schoolwork. I make dinner. We host gatherings at our place regularly. When Z was part of a demonstration with Kronos Quartet I went and then went out to dinner with them all. I sat next to David Harrington and made small talk. I went to a fucking conference at the UN. I spent an evening with one of my best friends in the world and laughed and talked and felt….happy. Ok, so the jogging hasn’t been going well for about a month and a half. Last week I was only out once and this week twice. But god fucking damn it is March 23rd and right now it is 21 degrees with a biting wind. There was an inch of fresh snow on the roads this morning. And twice this week I took my kids to the doc’s (strep) instead of going for my jog. Life happens. And this weather is…well come on.

It would be easy to just wallow in how awful this disorder makes me feel without giving myself credit for progress. But I’m a Mom now, I cannot afford to be that self indulgent. I have worked hard and I am fighting back. It would be easy to stay in the place where I just hate myself and berate myself. Self loathing is one of the most comfortable states of being for me. I believe it with my whole heart, I’ve had years of practice.

This anxiety disorder isn’t something that I can fix or cure. It’s as much a part of me as my brown hair and freakishly pale and moley skin. That doesn’t mean I give up. In fact, I don’t give up anymore. I am in a really bad place, but I am fucking getting shit done. Do I cry a twenty times a day? Yup. Do I go to Z and tell him I can’t I can’t I can’t do it? Yup. Do I spend evenings after Z comes home in bed sure that I have strep myself, or a stomach bug, or cancer? All the time.

Do I finish my readings for class? I do. Do I turn in work late? I do not. Do I pay our bills? Mostly on time even! Do I make sure my boys feel loved and cared for? You bet your ass I do.

Things are not great. Z has to bear the brunt of it and I feel awful, guilty, ashamed. But I am also getting shit done.

The anxiety disorder didn’t just happened to me one day. It’s something that has always been. T has recently learned to say “Excuse me” after he burps or farts. I remember learning the same thing when I was his age. I also remember feeling terrible guilt and dread about all the times I burped and farted before I knew about the excuse me thing. After my parents tucked me in at night I would whisper “Excuse me” over and over and over to make up for those times I didn’t. I thought something terrible would happen unless I made up for my unknowing rudeness.

So it is a chronic condition. It kicks my ass over and over and over. It’s been kicking my ass since I was a little girl. And now I’m kicking ass right back.

The drug thing is the hardest part right now. Historically trying new drugs increases my anxiety. Ironic, huh? SSRIs, the class of drug most commonly used to treat anxiety and depression list increased anxiety as a common side effect. That’s how crazy people meds work. It is a guessing game and what is supposed to help you can make you much much worse. Abilify might have augmented the SSRI you were taking beautifully. It made me think I was losing my mind.

I was supposed to try a new drug after last winter’s experiment didn’t work. There was excuse after excuse-C wasn’t weaned, we were traveling, the fall is a really stressful time, the winter is a really stressful time, the spring is a really stressful time. Well, I put my big girl pants back on. New class of drugs, increased anxiety not a common side effect. In scary side effect world there just might be a rash that lands me in the hospital. I know one person who has taken this drug. After a couple of months that person’s hair started to fall out in clumps. But if this one works bald and crazy might be better than a nutjob with a full head of hair. And my Mom told me she’d buy me a wig.

The drug crapshoot began three days ago. If it doesn’t work we will figure something else out. Because even though I’m not doing alright I’m doing alright.

cheese

This little stinker. When he saw me grab my phone he shouted, “Cheese!”

hiding

My poor guy was hiding in the closet because he didn’t want to take his medicine after we got home from the doc’s office. I feel him. That violently pink “bubble gum” stuff smells disgusting.

boys better

Enough meds in both boys so they are no longer contagious or in pain. Strep sucks.

un pass

My UN pass!

Toy Section

We were at Target and had some time to kill while the pharmacy filled a prescription. Naturally T asked to go to the toy section. As we walked to the aisle with the Transformers I noticed the family already there. The father was a mountain of a man, physically intimidating. The mother was his opposite, a tiny slip of a woman with a hard face. Not kind judgements, but I’m trying to tell this story honestly. There was a baby in the shopping cart and a boy between the age of my kids walking around. The boy was being downright nasty to his parents and the Dad was getting angry. Frankly, the Dad was scaring me a little.

I turned the cart and headed for the lego aisle instead. The family made me uneasy. Again, not very kind. I was making a snap judgement, an unfair judgement, a judgement I try to prevent T from making when he looks at strangers.

The boys were having a blast looking at the Star Wars legos. I was having a pretty big internal struggle over avoiding the other family. The kid and the Dad were audibly bickering, but suddenly the father erupted. His shouting was so violent that my heart started pounding and I had goosebumps on my arms. “I AM SICK OF YOUR FUCKING SHIT. WHAT THE FUCK IS WRONG WITH YOU? YOU FUCKING PIECE OF SHIT.”

T looked at me questioningly. I was frozen to the spot. I wasn’t a little scared anymore, I was terrified. If this man would talk to his three year old that way he might rip the head off a stranger who suggested he should tone it down.

T knew something was wrong, he looked at me for help and all I could do was stare blankly at him.

Listen, I know on this blog I swear like a sailor. But the truth is I try not to swear in front of the kids. I nag Z not to swear in front of them either. It isn’t cute to me when a kid says fuck or shit. Call me old fashioned, call me a raging hypocrite, but I don’t want my kids talking like that. And I try not to swear in anger. I try not to yell, “Fuck you!” at Z when we fight. To me swear words are fun, screaming them at someone equals loss of control loss and poisonous vitriol. I certainly have gone there in my life, more than I’d care to admit, but over the last nearly 16 years I’ve been with Z I try my damndest not to.

The poor kid being yelled at. I felt sick for him. What three year old deserves to be spoken to that way? Of course he was being a brat when I saw him earlier. He was clearly modeling behavior.

Z and I yell at the boys. Lately T has gotten a bit mouthy with me. Is it because I yell at him? Am I creating a monster? How different am I from that Dad? Is it just a slippery slope? How can I judge that man when I engage in a toned down version of the same behavior? Do I think I’m a better parent because I don’t yell in public or swear or lose total control? Is he actually more honest than I am?

The yelling stopped and I heard the family move away. I suggested T follow me in the opposite direction as I pushed C in our cart. Eventually we made our way back so T could salivate over his beloved Transformers. But I felt uncomfortable, ashamed, dirty even for the rest of our trip. Should I have spoken up for the poor kid? Who is going to protect him? What should I have said to T? He looked to me for answers and I gave him nothing. How dare I judge the family in the first place? How dare I feel momentarily vindicated in that judgement when the man freaked out?

Smart friends, what would you have done? What do you do when your kid is exposed to behavior you find abhorrent? What should I have done?

The most important task I have as a parent is to teach the boys to be decent humans. Yesterday I felt like a failure, a fraud.

chocolate drool

How about a funny picture to lighten things up? How about some post-dessert chocolate drool from my sweet mess of a boy?

Dumb Dumb Dumb Dumb

A couple of days ago my friend made a facebook group for people trying to run/jog/walk 1000 miles in 2014 and then posted a status update about it asking friends to let her know if they wanted in. There is no way on god’s green earth that I am making it to 1000 miles this year. My jogging has been a solo endeavor. It actually needs to be a solo endeavor. I’m an introvert with a severe anxiety disorder. The thought of jogging with another human makes me want to puke.

So joining a running club or finding an informal crew to go out with isn’t really an option for me. I like being alone. People have explained to me that they chat on their runs with friends and it cracks me up. I’m gasping for breath the whole time. I cannot imagine carrying on a conversation.

All of that said, I know next to nothing about training. The idea of an online community of actual runners appealed to me-I could learn a thing or two. I wanted in.

Yesterday I was poking some fun at my slow running times and another person in the group suggested speedwork to increase my pace. I had to google it. I also was introduced to the fabulous word fartlek (Thanks, Kelly). Obviously the highlight of my day.

I found an article explaining speedwork for beginners and I decided to do it this morning. You want to know one of the most stupid and ridiculous things about an anticipatory anxiety disorder? I was so nervous to try intervals, so uncomfortable about stepping outside my established jogging routine, so frightened to try something new that I had the shits all morning. Like full on IBS diarrhea. The boys were almost late to school because I had to run back to the bathroom for the 12th time.

It is so embarrassing to admit how incapacitated I am by doing new things. Even after all these years of living with anxiety I am still deeply shamed by how hard it is to engage in normal activities. Before every class I take I feel sick to my stomach. My brain is generating a list of possible excuses to get me out of going until the moment I step into the classroom. We went to a birthday party this weekend at a gymnastic place. As soon as T joined the group he ran off to an area he wasn’t allowed to go to, one of the instructors telling him to stop. I yelled at him and immediately felt like a parenting pariah.  I blinked back tears as I stood there with the other parents, unable to make eye contact. Next month through my class I have the opportunity to attended two days of the Commission on the Status of Women at the UN in New York City. It is a huge deal. And I am so scared that I simply cannot bear to think about it other than to hope I am hospitalized with a non-life threatening illness so I don’t have to go.

But.

The classes have been fantastic for me. I am hoping to become a matriculated grad student. I have new career goals. My self confidence has been positively impacted. T and C had an amazing time at the party. I’m glad I got to see it. We are going to start T on gymnastics classes there next month. What a bizarre stroke of luck that I have a professor who is on the board of the largest Right to Food NGO in the world! Who gets to do this shit as a part of class?

So yes, my fear and discomfort when faced with normal life is suffocating. But the difference between the me of three years ago and me now is I am fucking doing stuff anyway. I am putting myself in situations that are uncomfortable because the long term payoff is worth it. Was the fear and discomfort any less three years ago when I was struggling to engage? Nope. It was not. I’m going to have it no matter what choices I make. So why not fucking try to enjoy life? Why not make sure that I get to see my boys’ faces light up with joy as they ran around with a pack of kids and have the best time they’d ever had at a birthday party? Why not GO TO THE UNITED FUCKING NATIONS?

Why not run intervals for the first time?

Because there is a difference between facing fears and being a fucking moron.

The roads were not very clear here in Syracuse this morning. Actually worse today than yesterday because we are in the city where alternate side of the street parking means today’s driveable part of the road wasn’t really plowed well at 9:30am. The side with cars on it was pretty damn clear, though. So I wore my amazing and trusty yaktrax. And found about a .2 mile stretch of flat blacktop. And realized when I got home that I hurt my foot. Yaktrax are magic. I can jog in snow without slipping at all. But trying to sprint in them? Let’s just say that I’m a fucking idiot.

Being an idiot is really the easiest way to get hurt while jogging. As soon as I hit the road I knew it was dumb to try speedwork. But I didn’t want to wuss out. Thankfully tomorrow is my rest day. We’ll see how the foot feels on Thursday….

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P.S. I called the doc’s yesterday. Have an appointment for March 10th. Kinda proud of myself.

C jumps

C is missing the fear impulse. It was so cool to see him flying through the air.

hat hair

Short hair = amazing hat head.

swing

The swing actually resting on the snow.