To The Parent of My Son’s Friend

While our family support system is fairly vast, my son’s personal support system has shrunk as he struggles with anxiety, panic and depression. So we are exceedingly thankful for the kids who continue to make the effort to be his friend and to the parents who continue to open their homes to him. Yesterday  he got a little “normal” in his life.

13502116_1718020358485727_7824708568427205784_n

 

I Hate That Red Wristband

This is our first full week of summer vacation. I wrote last week about how challenging the break would be this year – one kid at home trying to avoid anxiety and panic triggers, one kid at a different day camp each week, and me trying to balance both of them while also muddling through one of my busiest work seasons of the year.

The hardest thing in all of that is helping my son through his minutes, hours, days. We talked a ton in recent weeks about how weekdays would be. We negotiated, and planned, and negotiated some more. And we came up with a plan that seems solid and doable. Part of that plan included giving him this first full week of summer to do (almost) anything he wanted (almost) all day.

Last night was rough. I was talking him through the things he would “have to” do today – including coming with me to drop his sister and a friend at day camp and making up a ninjutsu belt test that he missed over the weekend. He wasn’t happy about either of those “have to” items and we spent about an hour cycling through anger, anxiety, and sadness before we could calm him down enough to go to bed.

This morning, it was as if last night never happened. He got in the car with no trouble when it was time to drive the girls to camp, and, on his own,  double checked what time we would have to leave for the dojo for his belt test. I even felt good enough about his state of mind to leave him at home alone for about an hour while I got an allergy shot and picked up some groceries.

The middle part of the day was calm. He watched YouTube videos and I multi tasked on laundry and some work emails. He seemed just fine when I gave him 60 minute, 30 minute, 15 minute, 10 minute, and 5 minute warnings for turning off the computer. I was feeling incredibly hopeful about how the day was going.

But then it was 2pm – time to turn off the computer, put on his gi and go to the dojo. And just like that, he was having a panic attack. It was bad enough that I had to give in and say he did not have to go to the dojo. That piece of information minimized his panic and anxiety, but those were quickly replaced by immense sadness and self-hatred – which for him lately are also accompanied by attempts to hurt himself and requests for other people to hurt him too. It’s ugly, and heartbreaking, and messy, and exhausting. I spent 30 minutes literally holding him down and talking to him calmly as he thrashed and cried and tried to hurt himself. By the end we were both physically and emotionally fried.

A couple of hours later, my daughter was dropped off after day camp. I was excited to hear about her day, and stepped outside to greet her, the friend and the friend’s father. My daughter went barreling past me without a word. Her friend said “We had so much fun! We both got red wristbands.” Her friend’s father said, “She’s upset that she didn’t get the blue wristband.”

The wristbands are for levels of swim proficiency. You need a blue wristband to use the kayaks in the bay. The red wristband only gets you access to a row boat or the dragon boat with an adult. My daughter had been looking forward to kayaking. The red wristband was cause for major tween drama and angst. After the afternoon I’d had with her brother, I did not have the head space, or the energy, or the wherewithal to deal with tween drama and angst. In not my finest parenting moment, I essentially told her to get over it and added that she should probably stay in her room until she could find a more pleasant attitude.

With a little bit of space and perspective, I can empathize with her frustration – especially after she told me that her stomach was hurting during the swim test. She’s been struggling with tummy trouble for a few days, and on another day she probably could have passed the test for the blue wristband. She hates that red wristband, and honestly so do I.

A blue wristband would not have changed what happened during the day with her brother, but it would have allowed her to come home in a better mood. I hate that red wristband and the added emotions it brought into our house today. I hate that red wristband for taking fun away from my daughter (even though there is still plenty of amazing fun to be had without the blue wristband). I hate that red wristband because its presence on my daughter’s arm means that both of my kids are hurting today.

Both of my kids are hurting today. Her hurt isn’t as big or potentially life altering as his hurt, but it is just as real. It is just as real, and in some ways even more heartbreaking. She has missed out on a ton of stuff this past year because of her brother’s battle with anxiety, panic and depression. She has had to be mature beyond her years more times than I like to acknowledge. She has had a really rough year, and we really want her to have an amazing summer to heal some of her wounds. Today wasn’t a great start. But there’s tomorrow, and the next day, and 71 more days after that for fun, and laughter, and healing of wounds.

But I still hate that red wristband…

design-7

 

Summer Is Coming

My kids have exactly 3 hours of school left in the 2015-2016 school year. That means Summer Break begins at 12:01pm tomorrow afternoon.

Summer break this year is most likely going to be anything other than restful. With my son’s anxiety levels as high as they are right now, and potential triggers for panic attacks lurking almost everywhere, he doesn’t feel like he “can” or “wants to” do any day camps. He just wants to stay home. And I get that.

But then there is my daughter who wants to do everything, and not miss out an anything. And I also get that.

And then there is the fact that my Vacation Bible School is the first week of August, so the next 6 weeks are actually one of my busiest work seasons.

So right now I feel like this…

summer-is-coming

But I am trying really hard to remain positive, and flexible, and optimistic. Hopefully most days I can be more like this…

d68fe317a746f499812eccd0222dbe8e

Because whether I am ready for it or not…Summer officially starts tomorrow at 12:01pm!

 

Happy Father’s Day

We are clearly in a season of parenting that is h-a-r-d. Parenting one child battling anxiety and panic, while also trying to meet the needs of a “typical” child. This is the part that nobody warned us about. This is the part we couldn’t have even imagined. This is the part where there are more questions than answers. This is the part where we can’t commiserate with other parents experiencing a similar phase of childhood. This is the part we wouldn’t wish on anybody. But this is where we are.

And if we have to be here, there is nobody I would rather be here with than the man I call husband, and my kids call Dad. He helps me find the humor and light in even the darkest days, gives me space when I need it, and holds me close when I cry. He takes time to patiently work on Lego projects with our son, listens with great care to stories about YouTube videos or comic book characters, and holds our son tight when panic or anger consume him. He encourages our daughter to follow her many and varied dreams, embarrasses her with corny jokes, and plays special songs on the guitar just for her.

We are about as polar opposite as two people can be, but that is actually the strength of our relationship. For almost 24 years we have been perfecting the art of deferring to each other when appropriate, changing each other’s minds when necessary, and agreeing to disagree in the times in between. And in this season – in any and every season – there is nobody else I would want as my partner in life and in parenting.

IMG_3132

Outgrown 

When my son was first assessed for speech therapy through the school district, I started a file folder with every piece of paper we received. Over time, the file folder got too full of IEPs, progress reports, addendums, etc. and I up sized to a 3-ring binder. 
Fast forward 3 years – outside assessments, testing and reports from an educational psychologist, a speech pathologist, an occupational therapist, a psychologist & a psychiatrist -and the 3-ring binder was overflowing. 

Today I up sized again. Now it’s all filed in a 13 pocket expanding file. There are pockets that are empty. But one more will begin to be filled up this week as we navigate the negotiations of a 504 plan for our son. 2 years of trying to get the school district to see there is a problem, and we’re finally getting somewhere. 

The Day My Son Discovered My Blog

A few weeks ago, I was honored to have a piece I wrote for the blog about the realities of anxiety and panic attacks in children, republished on the incredible website The Mighty**. The day it was published, I forgot to click off the web page and my son found the article up on my computer. And he read it. At that point he did not know that this blog existed. I wasn’t necessarily hiding it from him, I just hadn’t decided to tell him yet. I wasn’t ready.

When I walked in to discover him reading my words, I froze. I wasn’t sure what to expect. I knew he’d have questions. I thought he might be angry. I assumed he wouldn’t understand. I was right about one thing – he did have questions. I was wrong about everything else – he wasn’t angry and he did understand.

He asked me what it was. I explained that I had been writing about my personal feelings, thoughts and concerns as he battled his anxiety and panic. I told him that it helped me to write, and that my hope was that it was also helpful to people facing similar struggles to know that they aren’t alone.

He thought about what I said for less than a minute, and then asked if he could write something too. He said, “I think it’s good what you’re doing. I want to write something too. I want people to know what I think and feel.” He took my breath away.

The next morning he sat down and typed a few words. Each day for about a week he wrote and rewrote. Among his many struggles is a mixed receptive/expressive language disorder. He can talk with extreme eloquence on topics ranging from mythology to American history to religion to Marvel super heroes. But ask him how he feels? He will probably answer in a single syllable. So the fact that he wanted to write about how he feels was HUGE, and the fact that he was working so hard to get his thoughts out in writing was ENORMOUS.

When he was finally happy with what he wrote, I added a few thoughts of my own as a preface and sent it to The Mighty. Yesterday, that article we co-wrote was posted on The Mighty. The editors at The Mighty were gracious enough to post his words without one single edit – his part of the brief article expresses exactly how he experiences life right now. It is authentic, and it brave, and it makes me beyond proud!!!

Screen Shot 2016-06-09 at 5.31.21 PM**The Mighty is an INCREDIBLE website. They publish real stories, by real people, facing real challenges. They are seeking to create a safe platform for people to tell their stories, discover community, and raise awareness. If you haven’t checked them out yet, you definitely should!

 

 

The Cheese(s) Stand Alone

2892cd0077625323f4f7ed72bb981f1e

This morning was the annual volunteer breakfast at the elementary school. The teachers and staff do an amazing job of putting together a morning of food, goodies and performances from the students. I went into the morning expecting to see my daughter play a flute duet with a friend, and hopeful that my son would be able to perform a dance with the rest of the 4th grade. When the 4th grade classes entered the room, my son was not among them. I wasn’t surprised.

On the way home from school today he told me he was sorry he did not perform for me. He said, “I got as far as the door and started to have a panic attack, so I just waited outside for everybody else. I was sad” When he said that I could picture his sad little face, watching from outside, all alone. And then I thought about how much of his day he is choosing to spend alone, just to avoid potential anxiety or panic triggers. He sits at a table in the far back of the classroom (and sometimes he sits under that table). He walks outside on his own when he feels panic beginning to hit. He eats lunch in the classroom. He plugs headphones into the laptop at home. He wears headphones connected to a tablet and/or keeps his head in a book when we are out. He sits in the empty chapel instead of the sanctuary at church.

The cheese stands alone…But in large part he has chosen to be alone. He is my introverted child. Even in “good” times, he has often chosen solitude over a group. On some level he is actually quite comfortable with being alone and at this point in time, he is happier alone than he is with other people. Being alone is easier for him, and when so much else is hard it’s easier for all of us to let him be alone. So while my heart aches a little for the forced nature of his current solitude, I know that it isn’t a battle we need to fight.

But then there is my extroverted daughter. My kid who has always been a seeker of companionship. This is the kid who did not sleep through the night until she was 6, simply because she would wake up and want to see a person. This is also the kid who makes friends wherever she goes, and has often befriended the lonely looking kids on the playground. I can’t picture that cheese standing alone. She doesn’t do alone. Or so I thought.

I overheard the kids talking before school this morning. My son asked my daughter why she has been playing alone at recess. She quickly shut him down, clearly not wanting to answer his question, but I wondered about it all day. This afternoon I asked her if she was in fact playing alone at recess. Turns out she is.

She talked about not being able to control her emotions – crying easily, getting mad – and not wanting to be near her friends when she feels that way. She said she would rather be alone than make her friends sad. She said she’d rather be a little sad, then make her friends sad. My heart broke. The cheese does stand alone. She is choosing to be alone, even though it is upsetting her.

There are so many possibilities that could be the cause of her emotional state. Many of those possibilities are “typical” tween girl stuff. My gut tells me that isn’t the case this time through. It is emotionally exhausting for all of us right now. My son may be the one battling anxiety and panic, but the rest of us are battling as well. I have a feeling that emotional exhaustion is the likely culprit of her rampant emotions.

I can only imagine how hard it is to be her right now. Since her brother’s anxiety and panic attacks have crept into his school day, kids know there is something wrong. She has told me in the past that she doesn’t want to see kids treat her brother differently, and that she also doesn’t want them to ask her what is wrong with him. My daughter is a fighter and a champion of those who can’t fight for themselves, but she is also 9 and has reached her limit. Both of my kids are navigating a minefield each day, and for their own separate reasons they have decided it is easier to do that alone.

There are 11 days of school left. I am hopeful the summer will give us all the time we need to get the upper hand in this battle and start the new school year fresh and strong. But for the next 11 days….the cheese(s) will stand alone.