The long road out of postpartum depression: you don’t need to be brave

Finn was born crying and didn’t stop for six weeks. I used to joke that if he was awake, he was crying. I spent six weeks shushing and swaying and swaddling and trying ANYTHING I could find to stop the crying. I remember taking him into a little boutique baby shop and the owner said, “Does he have colic?” I felt insulted. No, he didn’t have colic. He just cries a lot. Ugh.

And then one day, I eliminated soy and dairy from my diet (since I was breastfeeding) and all of a sudden he opened his eyes and said “a goo.”

It was like a dream.

The crying stopped and he was a happy baby. I felt like the sky opened up and the sun shone down on us.

Only I still felt in the dark.

I felt like I had Post Traumatic Stress Disorder.

I was depressed, agitated, quick to startle.

My baby’s crying stopped, but mine was only beginning.

I woke up in the morning with my heart racing for no reason. I cried all day long. One day, we were lying on my bed– Finn was about 6 months and Charlie was almost 3 and I couldn’t hide the tears that were rolling down my face. Charlie, who has been an old soul since birth, asked, “Mommy, why are you crying?” I didn’t know. I couldn’t give him a reason. I just couldn’t stop.

I would park Charlie on the couch and Finn in the Bumbo in front of TV just so I could go in the other room and cry.

The boys were doing adorable infant and toddler things, but I couldn’t see them because I was staring off into space and crying.

The rational side of me could see that I was depressed, but the depressed side of me felt like the world was ending. There was nothing good. Only darkness. It was like a heavy suit of armor that kept me from feeling anything but sadness.

My sister called me every day and later told me she knew before she even said the words, “How are you today?” that I wasn’t good. She said it was an unmistakable tone, almost a shake, in my voice. She never wanted to hear my voice like that again. She convinced me to call my OB-GYN and ask for help.

I felt like I should be stronger than this. I felt ungrateful to be depressed. I had two amazing boys who were happy and healthy, a husband who loved and supported me– we had a great life. Why couldn’t I snap out of it? The pressure to force myself out of the depression was only making me feel more hopeless.

Reluctantly, but with every ounce of courage I had, I called my OB and told her that I thought I had postpartum depression. She said, “Honey, your baby is 7 months old. You can’t have postpartum depression.” She suggested I seek psychiatric help, which only confirmed my suspicion that I wasn’t depressed but actually crazy. I didn’t even listen to the rest of what she said. I fell into a puddle on the floor and hung up the phone. My OB wouldn’t help me and didn’t even believe I had postpartum depression.

I felt like that was my one lifeline– my life preserver before I drowned– and she didn’t believe me.

Here’s the tricky thing about PPD. It’s not just the depression. It’s the paranoia. I was scared to admit that I was depressed because I thought someone was going to come take my babies from me. Deep down, I was unraveled. Unnerved. Shaken to my core. And that made me unfit to care for these two souls. I could barely care for my own.   Looking back, it seems ridiculous, but at the time, I was convinced it was true: I was crazy. I felt like the most pathetic person in the world. I thought that everyone hated me– even my closest family and my husband. I didn’t think I was worth saving.

Despite “all I had to be happy about.” I couldn’t find the happiness. Despite breastfeeding and getting an abundance of the (so-called) happy chemical oxytocin. I was drowning in sadness.

I was inconsolable.

I called my sister and told her my OB didn’t believe me– that she made me feel crazy and told me to go to a psychiatrist.  My sister said, “Who is your primary care doctor? I’m calling him. I’ll call you right back.”

She saved my life that day.

I cried on the floor of my bathroom while the kids banged on the door outside.

My sister talked to a nurse at my doctor and told her my story. The nurse said, “I’m so sorry that happened. We are going to get your sister help.”

The doctor called me a few hours later and he said, “I’m going to take care of you now. Can you come in tomorrow?”

The next day, I sat on the chair in the doctor’s office. Charlie climbed on my back and I nursed Finn while I sobbed to the doctor that I didn’t want to stop breastfeeding to take an antidepressant. He explained that my health came first, but he would find me a drug that was ok to breastfeed with.

I agreed and I started taking Paxil the next day.

It was a long road to recovery.

My doctor checked in with me every three months and made me promise to stay on the Paxil for at least a year. I hated that drug, but it saved my life.

Three months after I started taking antidepressants, I started seeing the fog lift. I didn’t feel like myself again, but I was getting glimpses of her. At 6 months, I told the doctor I was feeling better, but I still felt hopeless. He told me that was usually the last symptom to go. I was just happy to not feel crazy anymore.

I kept taking the Paxil and putting one foot in front of the other. Eventually the hopelessness went away. I started enjoying things again. I started seeing myself as loved and worthy of love again.

I stand here today lucky to have people in my life who would fight for me. People in my life who knew that wasn’t who I am. People who knew I was worth fighting for even if I couldn’t see it.

I even had the bravery to get pregnant two more times after that. And we have our beautiful twins as a result.

There isn’t a day that goes by that I don’t think about the depths of that depression and how my mind got away from me. I hope and pray that everyone out there who is suffering can find their way back.

There is no shame in asking for help. And sometimes we need others to ask for us.

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Happiness came once again. It was a hard road, but I am better for it.

If you are a mom who thinks she is experiencing postpartum depression, get help! Don’t give up on yourself! This isn’t your fault. There are resources to help you, but many of them don’t speak of how long PPD symptoms can last. In my case, it was well past the first 6 months. And that is ok. Check out this amazing website run by a mom who has been through it: postpartumprogress.com  That link will take you to the “Symptoms of PPD” post. Read it. It’s in language you will understand. You will not be made to feel broken or ashamed.

There is also a lesser talked about kind of postpartum depression that Dads experience called paternal postpartum depression (PPPD). It’s real and it’s just as scary. Twenty Six percent of new dads experience it and there’s no shame in admitting it. Check out these resources: postpartummen.com,  “Sad Dads” on parents.com, “Depression in Men…” on postpartum progress.com. 

A soft place to land or a hard place to live?

Home is really hard for Finn.

Those are six of the most heartbreaking and truthful words I have had to write.

Finn’s not like other kids. That goes without saying. And it’s not like he doesn’t like home or even find comfort from home, but home, for Finn, is like sitting in front of a high speed fan on a hot day. At first, it feels good and it’s comforting, but eventually it gets really annoying.

The part that’s really hard for me, besides all the chaos that Finn having a hard time at home brings, is the fact that Finn doesn’t have ANY trouble at school. He’s a completely different kid. He’s jovial and affable. He’s compliant and ingratiating. His teacher claims to almost never have to redirect him beyond what is age-appropriate for a 2nd grader. It blows my mind. Because, at home, I have to ask him no less than ten times to stop wrestling his brother and get dressed. And I can’t even tell you how many times (an hour) he gets in trouble for growling at the twins or just plain making them cry for no reason. He won’t share. He’s totally rigid and unrelenting.

Now, I know the me-of-3-years-ago would have given my left arm to have Finn where he is at school. He is a serious rock star. He has friends. He’s on grade level (or above) academically. It is picture perfect. For real. I’m not bragging. I’m, as Momastery would say, wearing my perspectacles. Only someone who has walked in my shoes can have the clarity, perspective and gratitude for these gifts as I see them. And I know they are gifts.

It’s just that I thought that as Finn got better at school, he would also get better at home, but that just isn’t the case. He’s like Dr. Jekyll and Mr. Hyde.

Some mornings he just wakes up on the wrong side of the bed. At 5:30. And screams.

And some days, despite having created a schedule for him and “steam rolling” him with the exercise ball, he still throws himself on the ground when we tell him his (scheduled) Wii time is over.

And I get that transitions (even scheduled ones) are hard, but he would NEVER do that at school. In fact, if a friend from the neighborhood walked in our house while he were throwing a fit on the floor, he would stop– immediately. I’ve seen it happen.

So where does that leave me? Being played? Almost positively, absolutely. But it doesn’t change the fact that my boy hates being home and he’s making it miserable for the rest of us.

I’ve tried everything– positive behavior supports (or as we seasoned parents call them “token reward systems”), schedules, social stories, at-home ABA therapy, pragmatic speech therapy, OT exercises, “if / then” statements, clearly stated rules and expectations, ignoring the negative behaviors, punishment… you name it, I’ve tried it.

I am at a loss for where to go from here.

The truth about our Disney vacation

You know those videos (mostly commercials) of the parents surprising their kids with a trip to Disney? You know the ones:

Parents (likely on Christmas morning): “Merry Christmas kids! Guess what Santa brought?”

Kids (all sleepy and cute in their Christmas jammies): “What?”

Parents: “We’re going to Disney World!!!!”

Kids: “OH! MY! GOOOODDDDDDDD!!!!!” And much jumping and hilarity ensue.

I hate those freaking videos. Continue reading

10 things I learned when I gave up Facebook

In all the hustle of this modern parenting world, I did what my kids thought was impossible, and I gave up Facebook for Lent.

Pathetic as it was that my 8 and 6-year-olds thought I wasn’t strong enough to stay off Facebook for 46 days. I promised them I would.  To be honest, I was checking it up to 6 or 7 times a day… so my own addiction was scaring me.

My mind had been feeling really cluttered. At the end of the day, I would lie in bed and my heart would race and I couldn’t figure out why. I found myself thinking about things I saw on Facebook (sometimes about friends, sometimes about people I hardly knew) and I would worry.

I found myself yearning for the 80s– the time when I grew up. A simpler time. A less connected time. My mom didn’t have Facebook to distract her. She didn’t pin cupcake recipes on Pinterest. If she wanted to get away from us, she went into her bedroom or went to the bathroom and shut the door or “rested her eyes” on the couch. She read magazines. Real paper magazines. She picked wild blackberries with us. She didn’t have her face buried in a phone. She made phone calls with a corded phone and talked to real people on the other end.

I wanted my kids to remember me doing things with them, not seeing the top of my head as I post their accomplishments on Facebook.

So, here are the things I did when I spent 46 days off Facebook…

I judged myself less. Ok, it’s sad and embarrassing to admit, but I can’t help it. I, unwittingly, compare myself to other people. It’s human nature. I see friends posting pictures of their perfectly primped kids in their name-brand attire and think my kids are raggamuffins. They never match. Their faces are usually dirty and they are usually wearing hand-me-downs. So be it. Without the chance to see other people’s “perfect” kids, I didn’t feel so bad about my own (adorable) dirtballs.

And while I spent less time criticizing myself, I also spent less time thinking about how others were judging me. I was less aware of my own presence outside of my house. The only people’s judgement I needed to worry about were sitting at my kitchen table, and it felt nice.

I took less pictures of my kids. Without my phone constantly in hand, I didn’t have it at the ready to snap their pictures. Without the instinct to post their cute little mugs on Facebook and Instagram, I found myself just being with them instead of capturing what they do (and sharing it with my friends and family). I still took pictures of them, I just didn’t know what to do with them. They sat on my phone. I texted them to my husband. I made them my screen saver. I don’t think there is a whole in the internet where my kids’ pictures used to be.

I got my news from Brian Williams. Sure, I had to wait until 6:30 pm, but if it were newsworthy enough, Brian told me about it. It made me realize how much “news” is really just social media buzz. Brian Williams didn’t tell me what was #trending, he told me what was happening… in our world, not just in my news feed. It really broadened my perspective on the world. I used to feel like Facebook made me feel more connected to people, but instead it makes me feel more isolated and pigeon-holed. Facebook’s new algorithm chooses what and who it wants to show me and as a result, I feel like I am in a box. Staying off of Facebook forced me to seek out my news instead of hearing it 2nd hand (and from the same people). Besides, if something on Facebook were really important (like Grumpy cat turning 2), the Today Show would tell me about it.

Ugh.

I didn’t read more books. I just didn’t. I thought I would have more down time, but it turns out I never trolled Facebook as a singular activity. It was my distraction– my escape. I was never fully focused on Facebook. I did it as a multi-task (if you can call it that.) I justified doing it to take my mind off the mind-numbing thing I was doing (like watching the same Peppa Pig episode). I realized that Facebook only served to numb my mind more. I was never fully focused on either thing, Peppa or Facebook. Without the chance to check Facebook while watching Peppa Pig, I turned off the tv and made the kids play Candy Land instead.

I was less frustrated. I have been writing a lot  about yelling at my kids less. I found that when I wasn’t trying to do 2 things at once, I was less annoyed with my kids. If you haven’t read Orange Rhino, go check her out. She’s amazing. She’s not perfect (just like the rest of us), but she’s trying to yell at her kids less and she’s inspiring as hell. Thanks to her, I’m trying to pay more attention to what frustrates me, and being on Facebook while trying to parent 4 kids is definitely high on my frustration meter!

I had thoughts and I kept them to myself. Usually, when something funny happens, my first thought is to tell it on Facebook. I have an inner-monologue of self-deprecating Facebook posts in my head at any given time. During the first few weeks of my fast, things popped into my head and I itched to do something with them. I couldn’t believe that I had a thought I couldn’t share it with my 560 Facebook friends. After a few weeks, the itch went away. I didn’t feel the need to encapsulate a funny thought or life experience into a Facebook update. My experiences were mine and mine alone. I kept them to myself or occasionally shared them with my husband– if he could ever hear me over the chaos at the dinner table.

Charlie turned 9 and I didn’t publicly wish him a happy birthday on Facebook (which he isn’t on anyway, so it’s really kind of ridiculous). I didn’t lament over “where the time had gone” or tell everyone what a smart, wonderful, thoughtful little boy he is growing into. I had those thoughts. I just told them directly to him, instead of announcing them to the internet.

I thought about autism less. The day Finn was diagnosed with autism, Facebook stopped being fun for me. I started following a bunch of autism bloggers and advocacy discussion pages. Many of them have really helped me understand autism and how to advocate for Finn’s needs, but now 3 years later, I can’t stop reading the discussion pages and bloggers (even though I have a pretty good understanding of Finn’s autism). I see an article or discussion post and I can’t look away. What if it’s something I need to know? Well I just spent 40 days not knowing what the discussion boards were saying, and I think I’m ok. I think Finn’s ok. Instead of thinking I needed to do something “autism specific” (like more OT or horse riding therapy or melatonin for sleep or more organic foods), I just listened and responded to my kid. I focused less on his behavior being a by-product of his autism and more on it being a part of who he is. Every behavior does not need to be shaped and modified. He is a little boy. I’m sick of thinking about him in terms of IEP goals.

I didn’t take 1 selfie. Well, duh. What the heck would I do with a picture of myself? It seems rather redundant. Without the need to share what I am doing with the rest of the world, why would I need to take a picture of myself doing it?

I didn’t take 1 personality quiz. Perhaps it’s a sign of my age, but so many of the posts in my newsfeed were about people taking personality quizzes (“What Gilligan’s Island character are you?” or “What does your music collection say about you?”) I don’t really care. I don’t care if you are Ginger or the Professor. And I don’t really care if having a Biz Markie CD coupled with the Beatles’ White Album makes you an “eclectic dreamer with the propensity to bob your head.”

I felt less important. There’s nothing like a push notification on your iPhone to make you feel like you need to check it immediately. It’s a very inflated sense of importance. What if someone really needed me? What if it weren’t just a comment on a comment I made?

Lives could be hanging in the balance…

I was willing to take that chance.

If you needed me, you had to email me or actually, gasp, call (or text) me on the phone. Not many people did. And I’m ok with that. In this age of instant everything, I am OK with not being right at people’s fingertips. I took the Facebook app off my phone and iPad. Every few weeks, Facebook would send me an email and say, “wait, wait, you missed these posts from your friends…” But, in all, the “quiet” felt really nice. So nice, in fact, I have decided not to reload the apps on my phone and IPad. I am back on Facebook; although I haven’t posted anything. It feels weird to jump back in. So, I think I’m going to stick to checking it on the old-fashioned desktop computer. It’s less accessible that way. Just the way I like it.

On Easter Sunday, I announced that I had made it through Lent without going on Facebook, and Charlie said, “Oh, I forgot that Facebook existed.” I couldn’t think of a better reward for my fast! I think I’ll have to keep it that way.

I want my kids to learn that real friends are the ones you can see in person (at least every once in a while) and family is the most important of all.

Here’s to living a more real life…

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Our whole raggamuffin crew in our unmatching, uncoordinated Easter outfits. Would you expect anything less? By the way, I didn’t post this on Facebook.

 

 

My yelling’s smallest victims

My heart was so heavy as I tucked the boys into bed tonight. 

Charlie has been detached lately. I’ve tried to chalk it up to growing up, but I fear it’s something more.

He came home today in fits of uncontrollable sobs. He was worried about a project that’s due next week and he doesn’t think he’ll finish in time. I tried working through a solution with him, but I still couldn’t calm him down. He snapped at Henry and Tallulah, which isn’t like him. He lay on the couch still sobbing with the blanket pulled over his head. I curled up next to him and said, “What is it, baby? We will work it out together. You are not alone in this.” When he didn’t respond, I asked, “Are you sure there’s nothing else bothering you?” I always fear he is being bullied at school or having trouble with friends.

He said, “It’s home.”

I said, “What about home?”

Biting his lip, he said, “It’s just that you and Daddy are always so frustrated.”

I was horrified.

He was right.

I am so frustrated.

I am so embarrassed to admit it.

I could have a million excuses, but none of them justifies my crying child on the couch.

I swore I would do better when I vowed to stop yelling at my kids and I have failed in every possible way.

When Joe saw that I was going to try to stop yelling at them, he questioned why I would do that to myself. He said I was going to bottle up my frustration and drive myself crazy. He felt I was putting too much pressure on myself to be perfect. I didn’t see it that way. Perfection is never my goal. I just want to stop feeling guilty every time I put my head on the pillow at night.

I have tried. I started writing down my triggers (like Orange Rhino suggests). I’ve found that I yell when Finn hits one of his siblings and when everyone is crying at the same time (don’t laugh, it happens a lot!) I was working on it, but then I just gave up. I slipped back into old habits.

I can’t seem to get a handle on my anger. When the twins are crying and pulling each other’s hair and then Finn freaks out because he refuses to get a wrong answer on his homework, who could possibly keep a level head in that situation? Certainly not me. (Have I told you that I’m not perfect?) But I also have to concede that I am also the one causing some of that stress. My frustrated response escalates their frustration and sets a bad example. Do you know how many times I have yelled at them to stop yelling? Ugh. Worst of all, I fear that Charlie is the one who suffers the most. He suffers because he either forces himself to be a helper or he sacrifices his own needs to avoid burdening me with another request.

It has been said that autism parents have stress levels similar to that of combat soldiers. (I’ve always hated that analogy.) But, if that were true, what does it say about the stress levels of autism’s siblings?

Charlie has always had a light about him. He is a leader. He has a moral compass unlike that of many 8 year olds. We’ve always said he is an “old soul.” He always chooses right over easy, but lately I fear it’s becoming harder for him to choose happy over sad.

My little extrovert playing the role of "Hansel" in his theatre company's summer play.

My little extrovert playing the role of “Hansel” in his theatre company’s summer play.

He cries himself to sleep on Sunday nights. Some mornings, I can barely get him to get out of the car and onto the bus. He seems disinterested in his friends. I fear he is depressed and I don’t know what to do. What’s worse is that I fear he is depressed and there is something I can do.

I have to stop yelling at them. 

In my head, I am justified when the explosion comes out of my mouth. I’m pretty sure 9 out of 10 moms would do the same thing in my situation. But it still doesn’t make it right. I need to be the beacon in their storm, not the storm itself. This is not the mother I set out to be.

When Charlie was a newborn, Joe and I were walking him on the boardwalk in his stroller. We saw a Mom with a crying four year old. The child was hysterical; the mom clearly at her wit’s end. She yelled at the child, “Stop crying!” I recoiled. I couldn’t believe this mother could be so insensitive to her child who clearly needed her comfort. I remarked to Joe, “Let’s never tell Charlie to stop crying like that.”

Oh, karma, you are a cruel mistress.

Now here I sit wondering how many times I replaced anger with what should have been comfort– parenting from a place of frustration instead of compassion.

Well, once again, I say “no more!” I am recommitting myself to parenting with purpose. I don’t know that I will NEVER yell, but I have to try for Charlie– for all of them and for me.

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All I want for Christmas… is for my kid to not kick Santa

That quintessential picture on Santa’s lap. Whether the kids are smiling or crying, it’s always adorable. Parents get their kids all dolled up in their Christmas best. The kids make the finishing touches on their Christmas wish list. They head off to the mall for what will be the keepsake picture of the year. All the kids pile onto Santa’s lap. They say, “cheese,” get a candy cane and everybody’s happy.

That’s the way it happens, right?

I wouldn’t know.

Everything about going to see Santa is a nightmare in our house. We talk about it beforehand. I let the kids wear their jammies (so there’s no fight over the fancy clothes– and they look adorable!) Everyone’s excited about seeing Santa (including Finn). But, once we pull into the mall parking lot, it all goes to pot…

Have you ever tried to bathe a cat?

Because if you have, you will know what what it is like to try and get Finn to sit on Santa’s lap. He is all arms and legs, kicking and scratching, as he forces all his weight against me to try and escape.

Finn's first Christmas. Typical situation... Charlie is happy as can be. Finn is skeptical. But both cute as can be.

Finn’s first Christmas. Typical situation… Charlie is happy as can be. Finn is skeptical. But both cute as can be.

Things have gotten easier over the years, mostly because we’ve learned what he needs. Most of the early pictures involve lots of crying.

Poor Finny! He sat for me, but he didn't like it! If he could've jumped off he would!

Poor Finny! He sat for me, but he didn’t like it! If he could’ve jumped off he would!

Two years ago, my arm made a guest appearance in the picture. Finn refused to stay in the frame. Sweating bullets and searing with anger, I refused to let this one go. I held Finn in the picture while leaning out of the shot. Picture perfect, right?

Henry and Tallulah's first Christmas. Finn was ready to bolt! Oh yea, there's my arm!

Henry and Tallulah’s first Christmas. Finn was ready to bolt! Oh yea, there’s my arm!

Before Finn was diagnosed with autism and we discovered the world of sensory processing disorder, we just thought he was being difficult. We didn’t realize how truly stressful that experience was for him. The standing in line. The sitting on a stranger’s lap. The scratch of Santa’s beard. The flash of the camera. The people staring at him, trying to get him to look at the camera. It was all just too much for him.

Meanwhile, I was sweating bullets trying to get Finn to walk up to Santa and the picture lady is like, “What package do you want, Mom?”

Last year, we wised up (a little) and Joe stood in line while I took the kids into Gymboree. The kids watched the little Gymboree TV while I looked on the clearance rack for bargains for Tallulah. When Joe got close to the front, he texted me to come back. That worked a little better (but I was still a nervous wreck!) I don’t think the Gymboree people were too happy that we watched their TV for 15 minutes and then bolted, but they were really the unsung hero of our Santa picture last year.

What!? A smile? Sitting on Santa's lap? Holy Smokes! Thank you, Gymboree, for your TV and for keeping Finn from standing in line! You saved the day (and didn't even know it!)

What!? A smile? Sitting on Santa’s lap? Holy Smokes! Thank you, Gymboree, for your TV and for keeping Finn from standing in line! You saved the day (and didn’t even know it!)

But this year, I’m hoping our Santa visit is going to be a lot easier. I’ve heard of the Sensory Friendly Santa events all over the country. Friends of mine have sent me links to these kinds of events, but they are always too far for us to drive. I feel like I am always complaining about the lack of services we have in our neck of the woods. I wanted a Sensory Friendly Santa right here at our local mall; the Santa we always go to. So I decided to do something about it. I thought it would not only benefit my kid, but the many other kids (and parents) who struggle with this very same thing.

I started out by calling the corporate office of the picture company who does the Santa stand at the mall. I’m not sure if she understood what I was asking for, but she offered us a private event on a Monday or Tuesday when they are their slowest. I told her that simply wasn’t going to work. Many of our kids (including my own) have siblings who are in school. We just couldn’t make it work on a weekday. I so badly wanted this to work. I wanted to cry on the phone to this woman and say, “Don’t you understand how hard this type of thing is for us? We just want to go see Santa (the REAL mall Santa) just like everybody else. We don’t want to go to a cheesy, fake beard Santa just because they don’t have a long line and they will put up with my kid’s antics. WE WANT TO DO WHAT EVERYBODY ELSE DOES!” But, for once in my life, I bit my tongue, held in my tears and thanked the woman for trying to help.

But I didn’t feel satisfied. There had to be a way to get this done! So, I took to Facebook. I posted my problem on our FACES 4 Autism page and a Mom in our group read my post. She happened to be at the mall and she marched over to the Santa stand and talked to the manager. The manager said, “Of course we will do that for them!”

Later that day, I talked to the manager and she was like Mrs. Claus herself. She completely empathized with our situation and she said that they accommodate special needs kids all the time. She said that in the past they have asked the parents if it’s ok to ring the bell. (I could’ve cried right then!) She was like an angel. I could hardly believe it! I was going to save Christmas! Ok, so I wasn’t really saving Christmas. And it wasn’t all my doing, but just go with it…

We got a date on the books right then and there. They are going to open an hour early just for our families. We are going to have a craft table where the kids can make a free ornament while the parents wait in line for Santa. And she was open to any tips or suggestions I had to try and make the event as stress free as possible. I wrote a two page document with tips and suggestions for “Sensitive Santa” and his elves. (Click the link if you want to read them.)

Here's the flyer I made!

Here’s the flyer I made!

I am so happy and excited and humbled that this group of people is getting together to help our kids have a happy Christmas. But what is more important to me is the relief it will hopefully bring to their parents. Because I know the stress and the sweat and the tears that go into doing the smallest of tasks. Sometimes just getting in the car is a major catastrophe. So, if this eases some families’ stress this holiday season, then it will be the best present of all!

PS- I will be sure and post pictures after the event on Saturday.

Back to school jitters

School starts tomorrow and I’ve been a nervous wreck all day.

It doesn’t help that Finn just cried himself to sleep saying, “I hate school!” Of course, Charlie swooped in and tried to tell him all the great things about school. Most of which, Finn couldn’t care less.

School is an entirely different place for Finn than it is for Charlie. Social situations come much easier to Charlie. In fact, we made an impromptu visit to Charlie’s school this afternoon (to settle my nerves, not Charlie’s) and I asked him if he knew the principal and he said, “Yea, she’s really nice”– Charlie thinks everyone is his friend. And he’s usually right.

Finn thinks the exact opposite.

School is a big, confusing place to Finn. People are loud and unpredictable.

We went in to meet Finn’s teachers today. He will be spending about 80% of his day in the general education classroom with his aide. His teachers and his aide are awesome! They fawned over him. He, of course, ran off and tried to pick up his brother. Every time they tried to talk to him, he made rude remarks (Finn’s defense mechanism).

Last year, I spent a lot of time making sure Finn would feel as included as possible. He wanted to be in Mrs. M’s room more last year, so I wanted to make sure he felt like he was included right from the start. I put a lot of time into making sure this happened, so I’m hoping it goes well.

He did so amazing in Mrs. M’s room last year. He was well-behaved. He earned student of the month TWICE! He even had some boys that he liked. But starting a new school year feels like starting all over again at ground zero. There’s always the chance for Finn to get back into old habits. When he’s in this negative place, it’s easy for his anxiety to bring on problem behavior.

And then there’s the added stress of THE BUS!

At the end of last year, Finn proclaimed that he wanted to ride the bus with Charlie. For two years, Finn has ridden the special needs bus. There were a few aides on the bus and only a few other passengers. And it came right to the front door (which was awesome!) The only problem was that Charlie wasn’t on that bus. Charlie rode the regular ed bus. You know, the loud, obnoxious, raucous regular ed bus. The bus that even Charlie (“friend to all”) had trouble with bullies on. And now Finn wanted to ride it.

I labored over it and labored over it. I talked to him about it a million different ways. But he insisted he wanted to be with his brother. Charlie is moving to a different school this year, so the bus ride would be the only chance for them to see each other. Finn was very anxious about not having Charlie in his building anymore. This seemed an adequate remedy. (Except that he had to ride the regular ed bus.)

I had separate conversations with Charlie about it. He knew Finn riding the bus would mean that he could no longer sit with his best friend. He wasn’t thrilled about the idea, but he was willing to make the sacrifice for Finn. His number one concern was Finn’s behavior. He wanted to make SURE there was going to be an aide on the bus. He couldn’t “handle Finn by himself.” I assured him there would be.

Now here we are. The night before the first day of school and I am second guessing every decision I fought tooth and nail for. Charlie is upset that he can’t sit with his best friend. Finn doesn’t want to go to school at all. And my stomach hurts.

I was lying with Finn at bedtime trying to quell his fears. I think he could tell I was all smoke and mirrors. I tried walking him through his day, but he had a complaint about everything I brought up. I asked him where he wanted to eat lunch. (I had arranged that he would eat lunch in the self contained classroom, since the cafeteria is a major cause of stress for him). He asked, “where are all the other kids eating?” I said, “In the cafeteria.” He said, “Oh.” I told him he could go to the cafeteria if he wanted. He said, “No.” I said, “You can eat in Ms. B’s room.” He said, “No. I just won’t eat lunch.” My heart sank. I said, “Well, you think about it.” He said, “No, you think about it.”

I think his brain is on shut down. He is so worked up about everything that he can’t make a decision about anything. That’s kind of how I feel, too.

I’m hoping tomorrow goes better than I anticipate. Because it seems the only one who is excited is Charlie!

Maybe it will all feel better in the morning.

Let’s hope so!

The Calm After the Storm

We lie together in bed.

Just he and I.

His body is calm now.

His heart still racing.

His lip quivering.

His breath still spasms every so often.

But he is calm and available.

So I will take it.

I wrap myself around him and tell myself it’s not his fault. I tell myself it’s not my fault, either, but I can’t help but rehash the last few hours. I am lost in thought and trying desperately to regulate my own emotions.

His gears have downshifted. Much quicker than mine. I am still lost in the meltdown. Affected by his anger and rage. All of my buttons clearly pushed. My head pounding from the stress.

I’m not even sure how we made it home. My car on autopilot as I navigated the streets. Miraculously abiding the speed limit while he banged his head and thrashed about the backseat.

We lie together in silence. He says, “I love you” and I know my boy is back, so I ask him, “What could I have done to help you before you got so upset?”

He said, “Give me a ‘Finny wash.'” (A deep pressure massage.)

I almost chuckle at the simplicity of his answer. But knowing him, it doesn’t surprise me.

I said, “When?”

He said, “When I was drawing.”

I could not believe he could pinpoint the time in which he felt himself lose control.

I asked, “Why did you get so upset?”

He said, “Because there were too many people at Mom Mom’s.”

I knew that would be the case. I had been putting off going to my Mom’s all day. It’s not that I didn’t want to. I would’ve loved to let the kids play with their out-of-town cousins all day while I sat on the porch and watched the beach goers walk by. But that’s not our life. I knew Finn only had a few hours in him to be around that many people, so I chose to go over for dinner. It is what it is. It’s no one’s fault. It’s just too much for Finn.

I know it pains my parents to see him like that. To see how debilitating the simplest of events are for him. My mom is hardly equipped to feel so powerless. Lost without her usual ability to calm an upset child with a bowl of ice cream and a hug. She sees the pain on my face. The frustration. The helplessness. She knows I am doing my best. That he, though short-fused and utterly confusing to her, is doing his best. Seeing my patience waiver, my sisters try to interact with him, but he is already so far gone. Literally writhing around on the floor. The storm has taken over. We have nothing left to do but ride it out. Quickly deciding our safest tact, I knew we had to pack up and go. In a tizzy. Like we always do.

But he is calm now.

We are safe at home.

We lie together in bed.

Just he and I.

Rubbing each other’s backs and professing our unending love for each other.

Like it never happened.

The Truth

I haven’t been writing much lately. One part has to do with the four crazy kids running around my house coloring on the walls and the other part has to do with me.

I’ve been struggling with my “voice” on this blog.

When I first started blogging, I said I wasn’t going to “sugar coat” things. I started blogging because I wanted to express myself about raising a family amidst autism– the good, the bad, and the ugly. Only, I got scared. I didn’t want to tell you about the bad and the ugly. I wanted you to like me. I wanted you to like my family and most of all I wanted you to like Finn.

Because when I tell you that Finn is a sweet, caring, funny, energetic, thoughtful, and smart boy, I’m not saying that in spite of his autism. He really is all of those things. I felt like if I told you all of the struggles and the truths about autism, you would judge that part of Finn before you ever even knew him. And I could never forgive myself for that.

I wanted you to see the beauty, the joy, the quirkiness, the genius, and the wonder of Finn. I chose not to tell you about the fear, the anxiety (his and mine), the meltdowns, the impulsivity, the night terrors and the aggression. I didn’t expect you to walk away wishing you HAD a kid with autism, but I also didn’t want you to fear it. There are so many blogs out there spreading fear. I didn’t want to be one of them. (And I still don’t.)

There are some amazing autism blogs out there who inspire, and teach, and give hope. I wanted to be one of them. I wanted to be a part of the conversation and the movement that is changing the autism world.

But in doing that, I’ve stripped my blog of the truth. Like my post “The one about elevator anxiety.” I’d love to tell you that when I see Finn’s anxiety starting to flare, I always opt for the steps. But the truth is that sometimes we have to physically pick him up and put him on the elevator because we have twins in the stroller and an 8 year old who is getting nervous that his little brother is going to melt down in the middle of New York City. And the room is on the 9th floor.

I left that part out.

I’ve felt compelled to wrap everything up with a neat, little bow. To always find the silver lining. To give others hope. To give me hope, too.

I thought that’s what you wanted to hear.

But life isn’t always that way. Not every story has a happy ending. Some endings aren’t written yet. And some endings are just messy and raw.

I thought that if I told you the truth about our struggles that you would pity me or I would look ungrateful for this life. And, believe me, I want neither. Three of my four kids (and one horrific miscarriage) were conceived out of fertility treatments. Nothing about my “full hands” is by accident. Every time I take Finn to Speech and Physical Therapy, we pass by the fertility doctor’s office and I am so palpably reminded of how much I feared living a life longing for these four souls. Each of them were prayed for and wished upon and dreamt about. I would have given anything in the world to be sitting right where I am right now. No struggle or challenge will EVER change that. But I would be a liar if I wrote those challenges out of our story altogether.

I hope that someday my kids read my blog and feel my love, but also see my humanity. Someday, when they have kids of their own, they will realize that sometimes, more often than I am willing to admit, I was making it up as I went along. I hope they realize that I was doing the best I could and somehow that will still be enough.

People comment on my blog and Facebook posts about what a good mom they think I am and I feel like a charlatan. Because on most days I am barely holding it together. I have yelled things through gritted teeth more times this summer than I care to admit (although I just did). I’ve been so frustrated that I have literally seen stars. The truth is that just because I am an autism mom it doesn’t give me any extra patience or virtue. I wish it did. I go to bed regretting things I’ve said and rehashing impatient moments from my day just like everybody else. (I think.) And there are some days when I just resent how much easier it seems to come to everybody else.

Even though I know that’s not true.

I am not perfect. I don’t have this whole thing together. I wish this blog could be more like Mary Poppins and less like Nanny McPhee, but that’s just not my life.

And I have to live in the truth if I’m ever going to survive. Writing this blog is part of that catharsis for me. And I have to feel safe to be me.

So, from now on, I’m going to try and be more truthful on my blog. That’s not to say I’m not going to still try and find the good in things, but if some days things are bad, then things are just bad. It doesn’t mean I won’t pick myself back up again tomorrow, but I may need a word or two of hope from you. I will always be an advocate for Finn, but I’m going to stop worrying about being a VOICE for autism in the way that might get me into the Huffington Post. There are plenty of other bloggers out there for that. I will always try to do Finn and everyone else in my family justice. I would never want to write anything that would shame or hurt them. But this life and this blog are my story, too, and I have to tell it my way.

I hope you’ll still follow along.

The one about elevator anxiety

The boys have been begging us to go to Central Park for months. I’m not sure what inspired their wanderlust, but we happily obliged.

Finn loves architecture. He could look at different kinds of buildings all day. And Charlie’s just always up for an adventure!

Of course, I was apprehensive about the trip for a myriad of reasons. First, I don’t really like New York City. I know! Before you attack me with all the reasons why “it’s the greatest city in the world” (Joe argues with me all the time!), I will say this trip has me warming up to the place. I am just not really a city girl. Or so I thought…

The more I am outside of our little corner of the universe,  the more I am comforted by the diversity of other places. Not just from an ethnicity standpoint, although it is nice to expose the kids to all different nationalities. (Both boys marveled at all the different languages being spoken by the passersby. They loved trying to figure out what country they were from!) But I was looking at the diversity more from a disability standpoint.

As we walked the streets, we saw all sorts of disabilities. People in wheel chairs and walking braces. Blind people. Deaf people. And then, while I was waiting to catch the hotel elevator (which TT so adorably called the “alligator,”) there was a little girl with a nasal canula and an oxygen cart. She was waiting for the elevator with her mother and smiling sweetly at the twins in their stroller. While we waited, a crowd started forming behind us. (The building was older and there were only 2, rather slow moving, elevators). Once the elevator finally arrived, the mother, in a broken English said, “I don’t think there will be room on the elevator for your stroller.” I said, “Oh, no worries, we’ll fit.” She said, “No. Um. My daughter. She gets nervous when there’s a lot of people on the elevator.” I said, “Oh, gosh! Of course! No problem! Go ahead, I’ll catch the next one.”

I stood there with the other ten people now waiting for the next elevator and, of course, thought of Finn. Finn HATES elevators. He thinks the doors are going to close too fast and we are going to get separated without each other on the elevator. So when we get on, he makes quite a ruckus until the doors are finally shut. Joe usually stands there and holds the door and quickly jumps on at the last second, so Finn is satiated. All the while, I am reminding Finn, “It’s ok, Finn. We’re all here. It’s ok, Finn.” It’s the kind of thing that looks (and is) really stressful for all involved.

It’s the kind of thing I wish I could say to anyone waiting or attempting to get on an elevator with us, “Um, my son, he gets nervous when there’s a lot of people on an elevator, so can you just wait for the next one?”

Now. I know I am perfectly entitled to say that. And as Finn’s advocate I am OK with saying that to an impending elevator crowd if I had to, but I find that it starts an autism conversation I don’t feel like having at every turn. And not because I am not willing to spread a little autism awareness where ever we go (and believe me, we do), but because I don’t want to have to give Finn’s diagnosis to EVERY stranger we meet.

If Finn had an oxygen tank trailing behind him, or some other form of universally recognized physical disability, people wouldn’t bat an eyelash. But because Finn is standing there looking “perfectly normal,” it makes for a tough sell. (Except when we got on the elevator the first time during the trip. After Finn’s extreme physical discomfort, his “eh, eh, eh,” Daddy’s shuffling everybody on the elevator, and my verbal quelling, Finn says to the other riders, “We are all going to die.” They didn’t seem amused. I probably could have sold them on riding another elevator!)

It made me think a lot about the “handicapped accessible” world we live in. Because that little girl had an oxygen tank, it seemed perfectly suitable that she would be nervous that other people ride on the elevator with her (someone could trip on it and accidentally disconnect it) or maybe she just had elevator anxiety. Either way, who was I to challenge her? But here is Finn, with autism and a bevy of anxieties, but no oxygen cart, and I’m at a loss for a quick way to get people to not ride the elevator with us! Don’t get me wrong, I don’t wish a physical disability on Finn, but sometimes the invisible ones are so much harder to take care of!

I guess the next best thing I can do is ask you to ask others to be understanding to kids who seem nervous or “disrespectful” in social situations. That kid might be Finn. Or someone just like him. Not all kids wear their disabilities where everyone can see them.

Exhausted after a grueling, but fun, day in Central Park!

Exhausted after a grueling, but fun, day in Central Park!