Between Tears and Rage

Balance is something I suck at.  I try, but I have a hard time focusing on more than one thing at a time.  Moms have to do it all day long, and sometimes we rock it.  Sometimes we fail miserably.  Sometimes we only give whats needed to one person and have to remember that in the next situation.  That is last part is what I am writing about today.

We have been seeing a psychiatrist in Boston for max for almost a year.  It has been really helpful for all of us, but it is a bit like pushing a giant boulder up a hill.

With chopsticks.

This is how therapy works with my kids.  You have to keep teaching and re teaching the same skills over and over.  They sink in.  Then a new problem pops up, we work on that, lose ground on the thing we had previously been working on, back track to that again, and so on.  I don’t see this ending anytime soon, and we have all adjusted to it.  It is hard though.  They each need really different things from me.  Max needs me to acknowledge how frustrated he is and that it doesn’t mean he is a bad person because he snaps so often and loudly.  Jack needs reassurance often that every time max snaps at him, it is because of MAX, it doesn’t mean that jack is bad.  In one of my many parent meetings with the Boston dr we were talking about how mean max is to jack, how he uses him as a way to feel better.  The lower he can get Jack when he is upset, the better he feels.  t is a really unhealthy pattern for both of them.  She told me to handle them each the same way.  Stop trying to change the behavior (because, chopsticks) and just call out that it is hard for them.  Say to max, I can see how hard it is for you to remain calm and that sucks.  To jack, when max yells at you its wrong, he shouldn’t treat you that way because no one deserves that.  We don’t need people fixing the unfixable for us.  We just need someone to see our struggle and let us know that someone else sees it too.  I can see the difference with max in these situations because after I acknowledge how hard it is for him we can talk about where it went wrong easier.  He doesn’t slip as fast into the I-am-the-worst-person-ever mode.

It is really fucking hard to meet these needs all at once.  There is one of me and two of them.  I spend endless amounts of energy trying to anticipate where things will go wrong so I can handle it.  Sometimes it just happens though, and I have to choose who needs me more in that moment.  That is the thing about having more than one kid, you give what you can but in the end you never know that they are getting what they need.  All we can hope is that through it all they feel the love behind our intentions.

This morning I chose jack.  Here is what went down.  The boys had made an armed robot out of magnatiles.  My kids are master builders with these things.  After they had finished their breakfast they went in to add to it to see if they could make it different or better.  If you have ever worked with these, you will know that eventually the weight of the structure is too much for the magnets and it collapses.  Jack went to add a piece to the top and he whole thing shattered.  Jack looked terrified and immediately started saying, “I didn’t mean to!!  I was just trying to make it bigger!”  He got the quivery lip and tears filled his eyes.  He knew that was coming.  You could physically feel the room expand with the breath max took, I could see in jacks face he was bracing himself.

“THIS IS ALL YOUR FAULT.  YOU DID THAT ON PURPOSE.  YOU WRECKED IT BECAUSE I BUILT IT, AND YOU WANTED THAT TO HAPPEN.  I AM GOING TO MAKE IT AGAIN AND YOU ARE NOT ALLOWED ANY WHERE NEAR IT OR TO TOUCH IT EVER AGAIN.”

I watched jack get as small as he could, covering his ears trying his hardest not to cry.  I told max it was an accident.  He started yelling at me so I sent him to his room to calm down and told him he could come back down when he was ready to use a normal voice.  He stomped off and slammed his door.  Jack quietly walked to the table and just stood there looking at the floor with the weight of the world on his little shoulders.  The room, jack and I all stopped holding our breath.

I called him over to me and this is what I said,

“Max shouldn’t have yelled at you like that.  It was an accident and you didn’t do anything wrong.  When he yells because he is angry at you, its wrong.  No one should treat you like that. “

I try my hardest to curb all the other things I wanted to say.  I want to explain to him that his brother loves him even if it gets shown in other ways.  I want to tell him that max has chemicals in his brain working against him sometimes and thats where the anger comes from, not because jack is causing it.  None of that matters to jack though.  What matters is that he hears someone say that it isn’t ok for him to be treated that way.  That we will not let that stand and we will protect him.  That we won’t defend that behavior.

Max came down and started in on jack again, so he was sent back upstairs.  He came down a third time sullen but quiet.  I repeated that this was an accident and after school they can build it again together if they want, but that the toys will be put away if there is yelling.  Just like that, the storm passed and they moved on.  The morning resumed.

I chose jack.  In a perfect world I could have split in two and and brought max up to his room and said,”I can see that you are really struggling and that you are upset that it broke.  You worked really hard on it and that stinks.”  I didn’t though.  I saw jacks face and his fear and picked him this morning.  It doesn’t work to talk to max when he is full on raging, and maybe later when it is just him and I, I can talk to him about it.  This is the thing about parenting more than one child at a time.  You have to pick you battles, moments, fights and what is important.

I chose right this morning and it feel good about it.

The Words We Don’t Say

Silence when you have kids can be divided into a few categories:

1. The silence when they are too quiet and you fear what they are doing.  Have they killed each other?  Have they started a fire?  Have they opened an entire box of cereal on the floor?  Did they find my stash of candy?
2. The silence when they are curled up in a bed laden with books, animals, and 100,000 blankets sweetly sleeping the kind of sleep that I am jealous of.
3. The silence when they are refusing to speak to you, not knowing that this isn’t really punishment.  We don’t tell them that, because its preferable to them screaming at you.

That is all I can come up with today, because these are the types that are most common in our house.  I am sure that there are more, but these ones happen daily.  As my kids get older I am less scared of number 1 because they aren’t toddlers anymore, but it still happens here and there.  Like that time when I let them have an amazon box to decorate into a car (I envisioned markers) and walked in 15 min later to see them both sawing at the sides with steak knives.  That was dealt with before anyone lost any fingers thankfully.  Then they took out the string and glue…….meh.  It was an annoying clean up but as a mom I find myself often weighing out the clean up after against how long I think it may keep them occupied happily.  Generally if its longer than 10 min, the project wins.

The silence that struck me today and made me sit down and write this entry is the third kind.  The kind where they are mad at you or just refuse to answer because……….because they are thinking thoughts loudly in their head.  The ones they know if they say out loud my head may pop off my body and spin around.  Max has recently learned this very helpful trick.  He knows which words are adult ones, because I swear a lot and also because I stamp them on jewelry. He knows he can’t say them till he is 25, but he has started recently talking about the things that are better to say only to yourself and I am grateful. For a 7-year-old his sarcasm is advanced.  He has two parents fluent in it, so it was inevitable.   He also possesses the I-hate-everything attitude that inspires visions of Eeyore when he is grumpy.  That is one of the downsides, but the opposite is just as glorious.  When he is happy or in a silly mood is ENTIRE body is in that with him.  There isn’t much grey area but we are used to it.   As he gets older it is easier for us to anticipate which max we will get and we roll with it.  Especially Jack.

Back to the moment of silence today.  I dropped max off early to work with the school psychologist today.  Drop off goes like this:  He leaps from my car.  I yell “I love you”, and “have a good day.”  He ignores me and keeps walking with his head down clutching his book with his shoulders bunched up.  On the occasion I walk him in he reacts the same.  Head down and refusing to answer.  His body language clearly giving me the middle finger without even needing to do it.  Pretending I am not there. Mostly because the fact that I am forcing him to go to school is unforgivable, and for that I do not deserve an answer.  Jack is the opposite.  He always stops to wave at the car and shouts “I love you!!” back before practically skipping into the building.

Lets just take a min to appreciate that my kids are so individual.

Today when I dropped max off, jack stayed in the car with me for our mini date.  As we pulled away he spoke up in his little voice and said this,

“Even though max never says I love you back, you know he loves you right?  He does.  He doesn’t say it, but he does.”

This kid.  No other child can make me tear up with his words like Jack.  He has a sweetness in him that we are so grateful for.  He was worried I didn’t know I was loved, and wanted to reassure me that I was.  He makes my heart ache with happiness.

I know max loves me.  I am his touchstone, the only one he wants when he is sick and hurting.  I am the one he sneaks in to bed with to read side by side.  The one he needs to hold him when he is frustrated or sad.  I know he loves me no matter how much he tries to pretend otherwise.  The lengths he will go to not show it is evidence enough.  I also understand that for some people the I love you doesn’t come as easy to the lips as it does with their actions.  Max isn’t comfortable saying the words, but when I had surgery this summer each time he took over the things I couldn’t do with quiet purpose and pride.  He did all the laundry.  Brought up the baskets for me to fold.  He made his brother breakfast.  He would bring me several cups of water throughout the day to make sure I had a drink.  He doesn’t need to say the words, because those things make it crystal clear. I felt that love harder than any hug and deeper than any words.

I guess the only way to end this post is to say this.  Both of my kids are amazing in their own ways.  Whether they show their love with their words or their actions, it comes across so bright you can’t miss it.

Not A Puzzle

The puzzle piece.  It has become a symbol for autism that’s instantly recognizable everywhere.  Personally I own jewelry that has it on there, and t-shirts, and I even have a jeweled one tattooed into my sleeve.  What I want to talk about is kind of tricky, but something that’s been fluttering around in my mind for a while.  The symbol seems harmless, and it can be, but it can also be hurtful too. Part of me has a fondness for it, and part of me feels uneasy embracing it because it is not mine to embrace.

When you get diagnosed with anything these days there is a foundation for it.  A walk, a day of  recognition (or month), a cause to donate money to research and usually a whole slew of merchandise on amazon that we can order to show the world what we are part of.  I got sucked in immediately.  Once my sweet boy was officially diagnosed, I bought into it all.  I had  CAUSE.  I didn’t delve too deep into any of it because to me it was an expression of this new tribe we belonged to.  The puzzle piece meant so much to me at that time, because it was a community.  I would see them everywhere and feel a little tug on my heart, because I felt like i wasn’t alone anymore.  It held weight to me, meaning.  It connected me with people around me.  The longer I have spent talking with people around me though, the more I realize that it’s the actual connecting that does it.  Not the symbol.  The symbol doesn’t mean nearly as much as talking to another mom with tears in her eyes because she finally found someone who understands her. Or my kids connecting with other autistic kids and hitting it off because they understand each other beautifully.  That is where the true community is.

Typical of us humans, I made max’s diagnosis all about me.  I didn’t for one minute think about what it would mean to someone on the other end of it.  How Max would feel about it, or other autistic people.  Talking about them, sometimes even in front of them like they are a puzzle to be solved, or a problem to be fixed.  I felt ashamed.  After I settled into this new feeling I began following a few fb groups that are not parents, but autistic people who talk about what bothers them and it has really opened my mind up wider.  To hear them talk about the feelings behind how they feel about people saying “they have autism”, instead of “they are autistic” is really powerful.  The wording can sound like an affliction or an identity/declaration depending on how it is worded.  I have read their comments, all agreeing how us neurotypical people make them feel like we are looking down on them.  I have learned the emotions behind the person are the same as mine in certain situations, maybe just not expressed in a way I recognize, and that it works both ways.  Autism Speaks, who is responsible for the light it up blue month, is looked at by autistic people as a horrendous organization.  All those little blue bulbs are not for the purpose of acceptance, making room for the differences.  Their foundation is more about making money and research, and “fixing” autism.  That is not something I can support because my kids are amazing.  I don’t think they need fixing at all.  I think they need a little help to figure out somethings, sure.  They need help learning how to speak about their emotions, and learning how to respond in certain environments but they aren’t something that needs fixing.  It is the rest of us.  We all need it.  As parents, families, humans, and a planet.

A friend of mine has 2 kids on the spectrum.  One describes autism as when he was born, his brain was upside down and then when it went upright the wires weren’t connected the same way.  Her other son HATES the puzzle piece because he doesn’t feel like he is a puzzle to be solved.  He feel like everyone else is.  My kids just say that autism means their brain works differently.  We had a conversation about all the differences in people this morning over breakfast because jack was talking about some kids at school that are in wheel chairs, and some need help eating at lunch.  We talked about how sometimes people are born this way, or it can happen as a result of an accident.  We talked about the fact that can happen as easily as being born autistic, with red hair, or maybe with arms that don’t work.  How that those differences make us better because if we were all born the same then how would we tell each other apart.  Jack responded in a very 5-year-old way, with how sad he was they couldn’t ride bikes because that’s his favorite.  Max piped up with, “Yeah but some of them have motors on their wheelchairs and can race.”

My kids are better at this acceptance thing that me sometimes.  They see the differences, and talk about them instead of politely pretending they aren’t there.  They want to talk because they want to understand.  We talk all the time about the differences in brains in our house, because we have a few different types.  Max is always seeing the parts of things, not the whole so he is a fixer.  Yesterday he fixed his therapist chair for her while they had their session because it was bothering him.  She was stunned because she had been trying all week but couldn’t figure it out.  He loves animals and babies and adults, but has a harder time sometimes with kids his own age.  Jack is a people pleaser who never wants anyone to be mad at him.  His brain is always trying to find a way to be silly, but also there is a deep well of caring in him for everyone around him, even if he is usually the quietest one around.  He often looks like he isn’t enjoying things, but if you ask him he is……he is just busy taking it in.  He can remember things that happened up to three years ago and he is only five.  He is amazing, they both are.  My brain doesn’t want to talk about engines and all their moving parts, much to their chagrin.  My brain wants to be creative, see life around me, take care of people, and talk about food.  I want to make bracelets with swears on them and laugh.

The puzzle piece thing fits, but it doesn’t.  We are puzzles, all of us, to everyone around us.  As humans we are always analyzing what makes people tick, how they will act/react. I think maybe we assigned the puzzle piece to autism because we don’t understand it, but on the flip side the autistic people could be having just as hard a time figuring us out.  I don’t think it is right or wrong, but definitely something to think about.  How we treat people is a direct reflection of us.  I don’t want to make my kids, or anyone else feel like they are less of a person because they are autistic.  I stare at my kids often with awe at how they think, and their amazing capacity to see the world differently than I do.  I dont look at them as something that needs fixing, if anything just someone I need help understanding where they are at.  I don’t want to squish them into any box, and I don’t want to see anyone else make them either.

They are different, not less…..but then again, I am too. Instead of covering things with puzzle pieces, I will be making things that say this:

Not a puzzle, a masterpiece.

That is how I truly see them.  I am not sure how our genes mixed up and created these amazing humans but I know this:

I wouldn’t change anything about them.  This world needs them, just like I need them to be exactly who they are.

All By Myself

Seven years, ten months and how ever many days since I became a mom for the first time.  I will never forget that day.  Hearing him cry for the first time.  Throwing up into a basin as I lay strapped to  the operating room table, and then looking over to see Max on the scale.  Fighting with Craig in the hospital about who got to hold him, and secretly loving  watching the bond between them grow.  Staring at his little fingers, watching him change from water-logged infant to regular looking baby in the first 24 hours.  How he smelled, how he felt on my chest sleeping.  I felt like I had found my purpose in life as cliché as that sounds.  Before he came I was a person, but he made me a mother.  It’s hard to explain unless you have been through that change but you no longer matter, except that you need to be there for your child.  Instead of your needs being addressed first, you instinctively attend to the babies first.  Your body is on alert 24/7 so that when you hear a hiccup in the middle of the night you wake up immediately.  You lose hours of time just staring at the hairs on their head, and the cradle cap underneath wondering how you can get rid of it without pissing them off.  I will never get that baby back, because he grew but I still see him in there.  In those blue eyes that are mine, his quick sarcasm and when he sleeps, he still breathes the same.

It is a cruel trick, this growing up.  When you are younger time can’t go by fast enough.  You can’t enjoy being 7 because you want to be 15, then 18, then 21.  We focus so much on where we want to be that we make it impossible for ourselves to enjoy right now.  Having the boys really taught me how to appreciate that.  Watching them grow little by little, day by day is like growing up all over again for me.  I get to see it all, learn it all again second-hand and it is a gift.  It hurts, though.  I want to keep them small.  I love that max can make his own breakfast now but I would give anything for 1 hour with my baby again.  Just one more hour of him snuggling into me while he sleeps, splashing in the tub happily.

Five years and three months since Jack came into our lives and changed me again.  Jack taught me real fear, how I couldn’t control things no matter how hard I tried.  Jack taught me some grown up lessons I could have lived without, but I wouldn’t change now because they make me grateful for him even when he is testing my patience.  I will never forget the nice woman who came and sat with Craig and I, patiently explaining what would happen.  How babies his gestation (30 weeks) don’t make noise and that doesn’t mean he is dead.  That he will be taken away immediately and we would be allowed to see him when it was safe for him.  That he needed to be born because of the state of my body and he was rapidly losing fluid inside of me.  The panic the night before, me hyperventilating that we were stupid to try for number 2 and should just go home.  The excruciating delivery where I felt things so awful my whole body shook and I refused to go to sleep when it was over because I thought I would die.  Hearing him scream like a seagull when he was finally born.  That cry sent our hearts soaring even though he was whisked upstairs immediately.  With his brother we had the easiest time, exactly what you picture when you are packing that hospital bag.  This was the opposite lesson.  We learned how fragile life was, and how we thought we were worried parents before but it didn’t hold a candle to holding a baby covered in tubes that stopped breathing in front of you, and had a pic line in his heart to help him live.  I learned real fear and it is burned in my brain forever, those moments.  Me standing outside the room on the maternity wing where all the normal babies were and crying, hating them and their moms more than I should have.  When I look at my happy 5-year-old running around, sometimes it steals my breath.  I remember all those things he doesn’t and I am so grateful for him.  Those lessons I learned when he was born hold nothing to the joy that he brings to our family.  He is the light, we needed him to be whole.

Here I sit, five years and three months later writing this after dropping him off at kindergarten.  For the first time since I gave birth to my first, I am all alone for 6 hours. I get to be myself again.   I will learn to love this time, and I am sure by their first vacation I will be annoyed to lose it.  Right now it stings though.  I have been a mom first since max took his first breath and now I get to set that aside for a while and focus on myself.  I can grow the little business I started, volunteer at the animal shelter, and drink a cup of coffee before it turns cold 5 days a week.  I can shop by myself, I can go to the gym, I can visit my friends dad once a week so he isn’t lonely.  I can do whatever I want for 6 hours.

I can’t go back though.  I can’t have more moments with those babies and right here as I cry into my coffee that is what I want more than anything.  I want to spin the clock back to those moments when it was all about feedings and changing diapers, and gas bubbles.  What I wouldn’t give to hold their little bodies in their onesies.  If you are in those moments right now, tired and covered in spit up……well first take a shower, because you have to take care of yourself to take care of a baby.  Drag that swing into the bathroom if you have to.  Second, and most importantly, enjoy every breath and heart beat you have with them.  Soon you will be dropping them off for a full day of school and feeling like you may crack into pieces with how much you miss them.

Then you will dry your tears, finish your coffee and then go look for a new pair of shoes to make yourself feel better.  Balance people.  It is all about balance.

 

*The bowtie was all him, he insisted on it.

When Life Gives You Lemons

This phrase.  Ugh.  People either turn it into something cheerful, like make it into lemonade xoxoxo or it becomes a platform for people like me to say chuck them at people.  You know, the assholes.  I can appreciate finding the silver lining in situations though and I am quite good at it.  My motto has become,”Of course.”  Of course I must have another surgery.  Of course Jacks therapist doesn’t have any hours available now that he is in school so he loses that support.  Of course max’s therapist also retired.  Of course my dog is acting weird because she is getting old.  Of course the night I buy filet mignon for Craig to make him a nice dinner is the night he gets the late ferry.  Of course is my way of just accepting the crazy that life throws my way, letting it roll off my back like water.  If you are a friend of mine, you just accept that I am this person that shit happens to, and know that if things can go wrong they will.  I will handle it with a of course, make a joke and move on.  This is life, and the only one I have so it’s ok.

Today was max’s first day of school.  He was very happy to wear his new shoes and that it was cold enough for jeans.  Not happy to be going to school, but sometimes an outfit can help.  For max going back to school is something to mourn.  It is a big lemon.  For me this year is momentous.  This is the first year that both my kids are in school full-time so I have all this time on my hands now.  Time to focus on starting up my new business, time to drink coffee for hours unrushed, to have yet another surgery and recover and then be back in the gym.  Time to volunteer at the animal shelter.  TIME. Time to be Heather again instead of mom/housekeeper/wife.  Just another person out here living.

These thoughts lasted for 7 min exactly.  I got my coffee, turned on my computer and opened the browser at a nice relaxed pace, and then my phone rang.  It was Max’s school.  At first I was worried because I  thought did he get sick right after I left?  How could this have happened in the 7 minutes it took for me to get in my seat?  It was one of the schools therapists calling, no emergency.  After that relief she then proceeded to tell me that the person max worked with all last year the closest had left unexpectedly over the summer.  My heart sank.  This person spent months getting him to trust her, to open up and share his feelings.  They met every day, and before school on Tuesdays.  She KNEW him.  Knew his brother because she worked with him closely also, and knew our family.  I would email her if max had a rough morning and she would be waiting for him with a room full of stuffed animals he could hug to feel better.  This morning when we left I made sure I reminded him that this person would be there for him if he had a rough day and needed to take a break at any time.  I sent him in there with that expectation and she wasn’t there.  She isn’t coming back.  All that time spent getting him to open to her now has to be started fresh with a new person.  My heart hurts.  When I asked him how he felt about it he said aggravated and annoyed.  Major lemon.

I am working on getting my feeling straight on this because it was a jolt.  I knew the BCBA was leaving because she sent us a letter and we got it before school started so we had time to process it.  This was just out of left field.  I came to love this woman so much for what she gave to max that I feel like I have lost her too.  She was one of the good ones that fought for him, saw his needs and wanted to address them when her predecessor had ignored them all.  I can only pray for both my kids that her replacement sees my kids the same way.  I want to be angry, and I will probably get there eventually.  I can’t be mad right now because I don’t know what happened.  Could have been a family emergency, or sickness.  If she just left to go to another job without a care in the world I can muster up some mad, but even then it won’t do max and jack any good, nor me.  This is a problem in our school system and I am not sure why.  This is the second time in 2.5 years we have lost both our BCBA and school psychologist.  Something isn’t right, and it makes me feel guarded against loving the new ones.  I am putting my kids emotional health in their hands while they are away for me and I need to trust that they won’t be leaving them.  They have lost so many people who are in their lives as service providers these past few months that it stings.

Just because I have all this time to myself now doesn’t mean I get to relax.  Summer (what I experienced of it in between my medical crazy) is now over.  Its time to put on my IEP mom armor and be ready for battle at a moments notice.  There will be emails to write, and meetings to schedule.  There is one in my inbox now just waiting for my attention.  In between I will use my volunteering and work to distract me from it all but it will still be there.  While my summer was a disaster at least there was none of this craziness so there is that at least.  I can appreciate that break now that it’s over and I am back to fight the fight.

As for the lemons…..I will not be making lemonade with them.  These lemons suck so I will be chucking them and trying to forget about them.  We will get new lemons and hope that the new ones don’t leave or suck.  If they do we will trash those ones.  This will go on for as long as needed until I feel like my kids are safe and no longer damaged by the sourness of it all.

Fuck you lemons.

Lesson Learned

We all have these expectations of each other, ones we have embedded into us at such an early age that we are not even conscious of them.  Smiling.  Most of us smile back even if we don’t know the person because it is just a reflex.  When we walk out of a door and someone is following us, most of us hold the door so it doesn’t close on the person behind us.  Standing in a line and not just shoving our way to the front.  Waiting for someone to finish a sentence before speaking.  These are things we all know on some level we have to do, even if they are a struggle for us.  I can have a hard time with that last one, just ask my husband.

When someone doesn’t follow these rules it can have a little impact or a huge one depending on the situation.  Not all of us are robots.  Sometimes we forget, don’t see the person in front of us, are in a rush or maybe we just don’t care.  Some of us are having a day where we can’t see outside of our own issues, or maybe we are just assholes deep down.  The point is every action has a reaction and you never really know what is going on the other end when it happens with a stranger.  For instance, with my friends if they say something that hurts me of pisses me off, I know that I will have the access I need should I decide to bring it up and resolve it.  With a stranger it is much trickier.  You see them for just a moment, and then they get swallowed up in the crowd.  Unless they visit the same place you are at that moment every day, you may never get a chance to talk to them.  Add to that the fact that it would be really weird if you walked up to them and said, “That time last week when you didn’t hold the door for me really annoyed me.”  It would be very uncomfortable and maybe they would apologize, but would that make that little moment better?  Probably not.  It wouldn’t even be worth the mention.  In the grand scheme of thing, it is insignificant.  To them, and to you because we have learned to roll with this kind of thing as we grow up.  So much so that we mostly don’t notice them anymore.

What happens when you are still learning though?  It can be heartbreaking and hard to understand.  This is what happened to Jack yesterday.  He had a little encounter that didn’t make sense to him and it was really hard for him to process it.

It was at Starbucks (because these days they are kind of on a mission to go every day) and we were coloring as usual.  Jack has graduated from one picture to two because he has been really enjoying this time with me and we try to make it last.  His first picture he colored was a Lightening Mcqueen and when he finished it I put the usual sticky note on it explaining what he was doing and sent him off.  He picked someone at a table.  I couldn’t see the person I could just see jack.  He ran off expecting the usual 2 min chat.  What happened instead was a new one for him, and for me.  I saw him hand it to the person with a big smile, then stand there little looking a little more awkward and confused.  Then the picture was handed back to him.  He came walking back over to me and whispered, “He didn’t want it.  He said it was good but didn’t take it.  I said it was for him but he said he didn’t want it.”

Well.  Fuck.  I held him for a minute in my lap and then told him maybe that guy was not the one who really needed to be made happy today, maybe someone else needed it more.  I told him to pick someone else and he did, they took it and smiled and said thank you.  Jack came back to me without his usual bounce, but tried to. He went to pick his second picture but then sat just fiddling with the markers and saying his hands were tired, he just wanted to watch me color instead.  I decided maybe we needed to have an actual conversation about the interaction with that guy instead of me trying to put a Disney princess spin on it.  He is too perceptive for that to work now.

“Jack, are you feeling something inside because that man gave you back your picture?  Is that why you don’t want to color right now?”

“Yes.”

“Do you know what that feeling is?  Is it sad?  Or maybe mad?  Or uncomfortable?  Do any of those words feel like the feeling inside?”

“Maybe sad.  Uncomfortable.”

I feel bad for glossing over that moment with him. I should have done this right after it happened, and if there is a next time I will.  He has all the feelings at 5 that I do but doesn’t know how to name them, how to talk them out, or absorb what happened and then move on.  It is my job to help with this.  I am his emotional concierge, among other things.  I broke it down for him like this:

Sometimes even when you do something nice for someone, they don’t want it.  That doesn’t mean what you are doing is bad, it just means that maybe they are in a bad mood or something is going on we don’t know about.  Maybe he was busy, or having a bad day, or a million other things.  All that matters is what you do.  You did something wonderful and brave coloring that picture and giving it to him.  Just because he didn’t take it doesn’t mean it was any less awesome.

Talking about this stuff for jack is really difficult for him.  He is a people pleaser so if he thinks its wrong to be upset he will try to pretend he isn’t.  Or if he thinks that someone is upset with him, he gets really sad.  He is a people pleaser who takes everything very seriously.  Not everyone in this world is going to treat him with love and he is learning that.  I would prefer that he didn’t have to learn these lessons at all, but that is life.  Not everyone will always love you.  Not everyone will find you charming, or lovely or want to be your friend.   That doesn’t make him any less of those things, but it is how it works.  Not everyone wants a picture.

He sat in my lap for a few minutes hugging me.  Then went back to his chair, colored his last picture.  He found a lovely man and gave it to him, who smiled and talked to jack for a while.  He thanked him and jack came back with a big smile.   I think it made up for the other interaction a little.  He will still remember the first one and knowing Jack he will bring it up again.  Could be in 2 days, 3 months or a year but I know he will mull it over and want to talk about it again.  We will, and we will go over the lesson again if we have to.

Yesterday when this happened I am sure you can imagine all the emotions I had as well.  I was sad for jack and wanted to hug him better.  Then I wanted to march over to that asshole and tell him next time a kid gives you a picture, just take it.  Throw it away later if you have to.  Then I realized something that stopped me in my tracks.  I don’t know this person.  He could have not really understood what Jack was trying to do.  He could have religious beliefs that prevent the acceptance of gifts.  He could be a germaphobe.  He could not like gingers.  He could maybe be on the spectrum also.  I have no clue.  It doesn’t matter either.  I will probably never see him again  It was a moment in his day.  It passed and left and impression on us, and maybe he has already forgotten about it.  All it want to say it this:

You never know how your actions affect others.  They also don’t know how their’s affect you.  Sometimes what you can learn from a situation is more valuable than revisiting it with the person and making it worse.

 

That Quick Run Back

Let me set the scene.

It is a cool morning.  I pull up to drop off at the kids camp, impeccably put together and groomed.  Wearing a well thought out outfit that says I care, and shoes to match.  I escort my well-behaved children to the door and kiss them each goodbye.  I then get back into my car gracefully and pine for them the three hours they are gone.

HAHAHAHAHAHHAHAHAHAHAHA.  Yeah, no.

This is what really happened today.  It is cool, that part is true.  I show up to drop them off early because I am hoping the doors will open early, so I can leave sooner.  I am dressed in yoga pants and a cut off t-shirt, with flip-flops because I have zero intention of working out today.  I am still recovering and they are easy.  No buttons to hurt me.  I am wearing sunglasses to hide my ass face.  We stand at the door early and my kids start arguing about something random so I move Jack to one side of me and Max to the other side.  We wait for the doors to open.  They finally do and max walks in without a word.  The teacher asks him if he wants to say goodbye and he ignores her and keeps walking, sullen and hating that he has to go.  Jack skips in with glee, as per usual because he skips with glee to do everything.  I take a deep breath of freedom and turn to my car thinking one thing.  COFFEE.

That is when I hear it, the little breathless voice of Jack.

“Mommy!!!!  Wait!!  I forgot!!”

He runs past the teachers, gives me a huge hug.  He creepy sniffs my neck, as always to calm himself.  He makes sure he kisses both my cheeks and my mouth and then without a word dashes back in past the laughing teachers.

There you have it guys.   This is why we get up every day.  This is why we have kids.  With one little scrap of sweetness they can erase an entire morning of crap and make the world shine for you.  I am not just an exhausted sick mom, I am also mommy.  The one who gives hugs and has that special mom smell that allows a 5-year-old to feel good enough to conquer the world.

I don’t get these moments with max often, but when I do they are so precious it almost hurts.  He has a different way.  He doesn’t want me to love on him like jack.  If I shower him with affection he will pull away, wipe it off.  If I am cooking though, sometimes he will come up behind me and hug me on his own.   Sometimes when I go in to wake him up, I will lay down with him and he moves in closer.  He adores reading next to me in my bed with space between us but comfortable in the silence.  Sometimes when he really needs it he will come barreling across the room like a small mac truck into me, and hold on tight.  I cherish these moments as much as all the easy-going love i get from Jack.  I live for it.  It is essential.

On our best days as parents we fail with good intentions.  On our best days as humans also.  We set out each morning new but sometimes things happen that rub us wrong, or life can screw with us.  Things break.  Your car doesn’t start.  LIFE HAPPENS.  Kids though, they move past that pretty fast.   I think that I can learn from them, how they handle things and move on.  Still come racing out for that hug even though a 1/2 hour earlier he was sobbing because I took his cereal away for spitting it at his brother.  He still did the quick run back.

Even if you have a crap day today, it’s never too late.  For an apology.  To turn it around.  A quick run back for a hug or an I am sorry I screamed at you.

So while I am not exactly pining for them at this moment while I type and drink my coffee, I am savoring that hug and I am looking forward to seeing their faces when I show up to get them.  What happens after they start fighting in the car, who knows.  We will have the rest of the day to start over again as many times as we need to get it right and love each other.

Namaste…….just kidding.  Not ACTUALLY doing yoga, remember??

That’s Something

We are all on a hunt for answers to questions.  Every minute of every day.  Some of them meaningless, like what am I going to wear today or what way is the best way to get from point a to point b.  When it comes to the really hard stuff though, the answers are hard to wait for.  Blood tests, a diagnosis, that letter to hear whether you were accepted or not for a job or school.  Although, I am prob dating myself just by saying that last part.  For all I know, that stuff happens by email or snapchat at this point.  These are the ones we pace for, either in our heads or physically.  Driving our friends and loved ones nuts with the hypothesizing of what the answer could be so we are prepared how to react to it when it comes.  Sometimes the answer is a welcome one, sometimes it sucks.  Today I happen to be writing about the sucky kind.

This has been the summer of suck, that is the name I have given it.  While I am much happier as a whole, medically things have been a disaster for me.  My kids have dealt with it like champs, but it is beginning to crack them.  They know I am not myself, that I am spendng more time laying down.  I had an issue that required surgery a month ago, the issue isn’t 100% resolved so I am now having lots of fun tests done to see if we can figure this out.  If you didn’t get the sarcasm from the fun comment, we are still getting to know each other.  It’s ok.  This past Thursday I prepped for a colonoscopy, and Friday it was done.

*The prep (drinking it) was awful. The actual reality of it working, not so bad.   However my body felt as though I had run over and I very seriously told my best friends that this would be the end of me and I was going to die from it.  More about this later.

I remember talking to the very sweet man nurse waiting to go in for it and saying please let him find something up there, I am crossing my fingers for it.  I am desperate at this point.  I want an answer, a fix, and then to go on and enjoy the rest of my summer.  There were a few minor things identified during the procedure, and a few biopsies taken (not for scary reasons, don’t worry) but there was not an answer when I woke up like I had hoped.  Deep down I knew that there wouldn’t be, but it didn’t stop me from hoping a little.  If you know me well, you know I am prone to getting really bizarre medical things, so this is par for the course for me.  I just was really hoping this time my body would prove me wrong because I have spent the last few months pushing through the pain to get through life, and that’s not how I had planned spending this time with my kids.  I may have cried a little after the nurse left me in recovery to get me something to drink.  Pity party of one.  I felt awful, everything hurt and I was just tired of this journey I have been on.  On the way out I saw the man nurse again, and he looked me in the eye and said, “So no answers today, huh?”.  I said no and then he said something that stuck with me, that I needed to hear.  It didn’t penetrate past the sadness I was wallowing at that moment, but it did later.

“Well, you know what it isn’t now.  That’s something.”

I went home.  Slept for  hours with my dog.  Woke up feeling horrendous.  Drowned my sorrows in pizza.  Went back to bed at 8.  Woke up the next morning and said out loud to my very confused dog, are you f*cking kidding me.  I was sick.  Sick sick.  Sore ears, headache, body aches worse, swollen throat and I just lay there.  Thinking it can not get worse.  Why me.  BLAH BLAH BLAH.  Why not, really???  I have been in so many drs offices these 2 months it was only a matter of time.  I live with a 5 and 7-year-old, walking and talking petri dishes.  I have been fighting another infection for 2 months.  Why not me?

I dragged my ass to a walk in, walked out with antibiotics I told myself I wouldn’t fill unless I developed a fever, even though my tonsils a covered in yuckies and I knew what it was.  I hate the thought of taking more medicine  at this point, because this is #6 or #7 since this started.  I went home.  Watch seasons 4-5 of shameless.  Went to bed.  Had  an epic crying episode in which my dog was terrified of me (jerk was supposed to comfort me or lick my tears, SOMETHING), talked (cried at) my husband who is away, passed out.  Woke up with a fever in the middle of the night, went and filled the antibiotics and started them right away.  I have strep, I know I do.  This happened over the winter and got worse and worse, so hopefully this time the drugs do their job.  The time for trying to tough this out is over for now.  I am weak, I am tired and everything hurts.

Anyways, now you are all caught up on my glamorous weekend. Sometime in the middle of the night the man nurses words came back to me.  I was so busy wallowing in the fact that I still don’t know whats wrong with me, that I lost track of the fact that we had ruled out lots of things it could have been.  Narrowed the playing field, knocked out several of the possibilities.  That is something, right?  Instead of sinking into a pity trap, I am now trying to focus on this instead.

I am waiting to go pick up my boys now.  I showered today, got dressed in non shitty clothes and did my hair.  I took a ton of ibuprofen that should wear off right around bed time that is starting to blur the edges of the pain. I still have ass face (that face you get when you feel like ass) but I want to greet my kids looking their mom, not a patient.  I will push through, feed them, bath them and then crawl to bed right as it starts to wear off.  This is called momming up.  Doing what needs to be done even when you are sick.  Tomorrow I will drag my ass out of bed, bring them to camp, and then go tell my therapist about my amazing weekend.  We will laugh about it.

Sometimes it isn’t about the answer, it’s about the things you knock out as possibilities.

That’s something.

Jack Meets Mark

It was a Starbucks date that started like any other.  Apple juice for jack, and a venti toffee nut iced coffee for me.  We sat, we colored and I sent jack off to deliver his masterpiece to a stranger.  Usually the encounter ends there with a  smile and a wave.  That particular day it did, until I checked Facebook later in the day and was connected to a post by a friend who had seen someone post a picture a boy had given him.  How it had made his day, and how he didn’t get to talk to us before we left.  It made me feel so good, knowing that Jack’s little gesture had found its way to him and impacted him enough where he wanted to share it.  It was only a matter of time before we were connected with one of Jacks new friends.

This is where the idea for the page The Starbucks Project with Jack came from.  He delivers his picture to them on his own, so unless the approach us after jack is the one who talks to them.  Usually I wave and mouth thank you to the strangers as they graciously talk to my little nugget.  I have had the pleasure of running into some of them later and they have told me how much it meant to them, but I wanted to start a little community, a small way that if they search through social media they can find us and leave a message.  This way, if they want to, they can follow along.   Follow this journey as it turns into whatever it becomes, wherever we decide to take it. Also, so that the baristas can tell the people that ask after him when we arent here how to connect. I didn’t anticipate it becoming the wonderful thing it has already, but the best things aren’t I guess.

A week later I bumped into Mark again, this time by myself and we chatted for a while about Jack, and how we had started what we were doing and why.  He told me that it meant a lot to him, that he keeps a journal and showed me a picture where he wrote in it to be more like Jack.  It makes my mom heart swell up and that liquid come to my eyes again.  This teeny little thing he did affected this grown man he has never met.  That is what we all do on a larger scale every day.  Every thing we say, every interaction we have gets absorbed by both people.  You never know what is going on at the other end, just how you feel as a result.  I still remember the man who screamed at me in traffic 2 years ago. He was so mad, he thought I was texting on my phone while at a stop light.  It filled me with rage and I thought about it for days.  I have seen him here and there since, talking on the phone angrily, watching the news in a local place and swearing at the tv.  That interaction I took so personally as this outpouring of rage in my direction, I answered with rage.  The more I see him in his state of anger, just about everywhere he is, I realize it wasn’t me.  I took it personally but maybe he is an angry person.  Maybe he comes off that way because terrible things have happened to him, or other people have been horrible to him.   It took the weight off me and instead of thinking about him and getting angry, I want to give him a hug instead.  I won’t, but I think about it.  Maybe he just needs a little love…….maybe he is just an asshole.  We will never know.

I digress.  Back to Jack and Mark.  They had the best kind of interaction.  The kind that spreads love and feeds souls.  This week I was back at Starbucks (I know, shut up, the coffee is good and the staff and I are friends now), waiting for a friend to arrive and in walks Mark.  We say hello again, he asked how Jack was doing and how he likes camp ect.  We talked for a few min and then he told me that his wife, Kelli, works for Hasbro and would like to set up a time for Jack to come for a tour and see everything.  I said of course, he would love that!!!!  Then……….what is hasbro??  I know, I live under a rock.  For a few seconds I thought he meant the hospital, and whatever Jack is happy to be just about anywhere doing anything ever.  He nicely told me not the hospital but Hasbro, the toy company. The one that makes the marvel toys?  Transformers?

SHUT UP.

That was my inner monologue.  My outer one was, “That would be amazing and he would absolutely love that.  I will email you my contact information.”  I then proceeded to text my friends in an excited frenzy!!!  This all happened because jack drew him a picture and now Jack is going to get to go see where they create all the cool stuff he dies over in the store???  Amazing.  His fairy Godfathers were especially excited, and may stow away for the trip.

Kelli and I have been emailing back and forth and have settled on a day in august where we will go for a tour.  She asked a little about Jack and what he likes and is taking the extra time to “Get a few things together to make it special.”

SHUT UP.  

This is already special.  They make transformers and rescue bots.  These are the top two things he plays with at home and somehow sneaks into my car…..at times I find them in my bed.  Under the covers.  Some mysteries will never be solved.   They make My Little Pony, which he loves very much.  They make ALL THE MARVEL TOYS.  The amount that he is going to love this experience will be calculated by how many things he wants to bring home and sleep with.  Like everything he sees and touches.  It will be such a special day for him, and it is all happening because he did something nice for someone.  He opened this door, all by his little self.  He was meant to meet mark that day, meant to make his day, and who knows who he will meet when we visit Hasbro, or in our future Starbucks adventures.  I can’t wait to meet Kelli, and I will share as much of that special day as I can without giving away any Hasbro top secrets!

The moral of this story can be summed up in a few short bullet points:

1.  Coffee is life and can open doors for you.
2. My child is amazing in more ways than can ever be counted.
3. None of us know for certain that toys don’t come alive and just want to rest on a bob-o-pedic.
4. We are VERY EXCITED for our trip to Hasbro.

 

*As usual, I will be posting this on my Facebook page, and on Jacks page.  Please feel free to share either.   If this grows it will be because people want to share it, not because I will be paying Facebook to boost any posts.  I think thats icky and obnoxious, and the total opposite of why we are doing any of this.

 

Coming Clean

There is thing all parents do with abandon, sometimes without even thinking about it.  We lie.

We lie to our kids about things that we aren’t ready to talk about, like when they are 4 and asking why the bunnies in the back yard are riding on each others backs.  We lie about the things we don’t want to share, like the secret stash of candy in the cabinet that’s “too spicy” or “mommies medicine”.  Some of these lies are to keep them innocent for longer, like santa, the easter bunny or why some fairy would sneak into their room and take their teeth in the middle of the night.  None of us know the long-term effects of these lies beyond the residual effects in our adult lives after finding out when we grow up all the stuff we were told that isn’t true.  Us moms and dads are just doing our best we can to raise them into humans who are good people, and we will all screw up a million ways but the intent is there.  The love is.

I am writing this particular entry because I tried to lie to my kids recently and it blew up in my face.  It was with the best of intentions, as a lot of them are but it just didn’t go my way.  Does it ever really?  Do our carefully laid out plans ever work out the way we envision them??  If you are reading this and the answer is yes, I mildly hate you.  I love a good plan and get super pissy when things don’t work out, as they don’t frequently.  Just ask my husband who usually gets the brunt of that.  He can tell you I am a treat.

So, my lie.  Without going into great detail I will say that in the beginning of June I got an infection, and it has been a persistent little bastard.  Several trips to the Dr, the er, courses of antibiotics later it was decided that it was only going to go away if it was surgically repaired.  Through this whole month of agony, I just told the kids that mom had an infection and wasn’t feeling well but we still did most of our usual activities.  I drove them to camp, we went to the playground ect.  I think the only change they really picked up on was that they got way more screen time than normal so mom could lay down as needed.  When I found out the date I was to go in for surgery, I set it up so they would spent the night at my moms for a sleepover, hang out with my sister for the next day and then dad would come get them later.  The idea being by the time they got home I would be in bed, and would just say I still wasn’t feeling that great but would be getting better soon.  Simple.  Less stress for them.  I didn’t plan on uttering the words surgery, hospital or stitches out loud in their presence.  In my mind, I was doing them a great favor by protecting them.  I wasn’t though, on some level they knew.  Jack had been a little extra snuggly and max had decided one of his chores was to be moms nurse and bring me lots of ginger ale.

Fast forward to the night before the surgery was scheduled when shit hit the fan.  They were safely at my moms by then, and I had spent the day in my bed in pain but waiting for the next day.  I kept telling myself I just needed to make it 24 hours and then I would be recovering not suffering.  After a month plus of fighting the infection, my body was done.  I hadn’t showered yet and the pain was getting so bad that I knew I needed help.  I called my Dr office but kept getting the please hold and annoying music so then I texted my 2 special nurse friends (you know who you are) and consulted then, and then it was decided i needed to go to the er.  I then did the most illogical thing, but I know you will understand.

I decided to shower.  My hair was dirty, you see.  When I gave birth to jack it was and that fact has haunted me for 5 years.  So even though I was not very stable, I would at least be clean.  The absurdity of this choice was made clear 2 min in when I got really dizzy and almost passed out and then sat down in the shower.  I finished though.  My hair was clean for the er, the nights stay in the hospital, the surgery, and the following nights stay.  I won the battle with my hair, but not the war with my stupidity.

What was day surgery tuned into me staying for 2 nights, some iv antibiotics, and my carefully laid plan being blown to bits.  I was so pissed off, all that planning to save my kids from knowing, then they showed up at home and I wasn’t there.  I was supposed to be there in my bed recovering and then they never would have known.  Reflecting on this now, I get how stupid it was.  I was trying to save max and jack the worry that I knew would happen, and the perseverating if I was going to be ok.  Instead I ended up rocking their carefully constructed worlds with my good intentions.

I am on the mend, and they are too.  This past week since my mini vacation at Milford Regional Hospital they have been really off but that’s to be expected.  It has been really easy to be patient with them because I am off too.  In between the dr visits and pharmacy trips there has been ice cream and bike riding while mom watches from a beach chair.  There has been extra snuggles and large cups of ginger ale.  There has been some tears, some more aggression but thats their pattern when things are thrown off.  We are making it through this together now instead of my trying to keep it to myself and they have been really wonderful about it.  I can say to them I need to lay down for a bit and they try hard to not scream at each other, sometimes succeeding.

This is a very long-winded way of saying I learned they can handle a bit more than I give them credit for.  That trying to protect them by not telling them things is a crap thing to do, because if the stars don’t align perfectly I am leaving them unprepared for whats happening.  We learn as parents of kids on the spectrum that schedules and knowing what comes next can go a long way in calming them down.  Hopefully there is no next time for this, but if there is I am going to sit them down the day before and tell them what is happening  Make them a social story.  Let them ask any questions they want.

They are kids.  My natural inclination is to protect them from everything in my power.  That is not a bad thing, but I also need to give them room to grow and realize scary things happen and then work out ok in the end.  That they can take care of people also, and feel good about it.  By coming clean with them about whats going on it has opened up conversations about why and what we can do to help each other when we don’t feel good.  Some of the things I do for them when they feel sick, they have started to use to nurture me.  It is a beautiful thing.