The Starbucks Project

Let me just start this by saying I am not getting paid by Starbucks, nor am I affiliated with them in any way.  I am just a frequent customer and coffee obsessed person.  Although, if they wanted to pay me I wouldn’t say no………….just throwing that out there into the universe.

This project of mine started about 5 months ago.  Max was going in early to school early on Tuesdays so jack and I were up early and dressed with 45 minutes before he needed to be at school.  My favorite place to hang out is the Starbucks in Franklin ma. I love everything about it here.  I am typing this from my favorite table, drinking a skinny vanilla latte made for me by Connor, my favorite barista. (More on him later).   I needed coffee that morning so I brought jack in with me, got him a juice box and we sat down chatting until we needed to leave.  The next time we went I brought my bullet journal and markers in and gave him a pad of paper to scribble on while I charted max’s behaviors (so glamorous a life i lead).  It occurred to me that maybe a coloring book would be a better idea, since his aba therapist has been working on his coloring with him.  He liked to take one color and cover the entire page as fast as possible to get the task over with.  We were trying to get him to slow down and use more than one color in the beginning so I figure our “Starbucks dates” were the perfect opportunity.  It worked.  He slowed down and really started to pick the colors he wanted to use with intent.  “This bottle is blue because its glass.  This cloud I am not coloring because its white.”  He went from rushing to taking his time and enjoying it.  He would hand over his picture at the end with pride and get adorably shy when i gushed over what a great job he did.

The END.

Just kidding.  I have become the kind of autism parent that likes to see what my kids can do, rather than just sit back and say they wouldn’t like/do/be comfortable with something.  So imagine the shock and betrayal on Jacks sweet face when I informed him the next time he finished a picture that he had to pick a stranger to give it to.  I think if there was a way for a 5-year-old who is generally obedient and a people pleaser to tell me to fuck off nicely, he would have.  He stared at me.  I stared back.  He accepted that this was his fate, and begrudgingly looked around. He picked the person next to us, walked over, chucked it at her, and ran away.  The woman, who has since started saying hi to him when she comes in now, was bemused but accepted it.  I looked at her and just vaguely explained that he was shy and working on talking to people.  She told jack she loved it and could see that he worked really hard on it and he lit up with pride again.

We did it like this for 2 more dates before I realized a few things. First, people had no idea why he was giving them a picture.  When he picked a man, which he did frequently, they would look at me a little uncomfortable and accept it, but it was weird.  It took me a few times to realize it the roles were reversed that it may look as if I was sending my kid over to hit on them for me.  Ew.  Second, he was running away so  fast that when they started to ask a question or say thank you he would be back with me curled up on my lap by the time the second word was out of their mouths.  The next time we went in I did two things.  I brought with me a tiny post it pad to write a note to the recipient.  It usually says I am autistic and working on my social skills, thank you for talking to me.  That took care of the weird looks, and it made people a little more understanding of a child who was obviously uncomfortable but approaching them anyway.  Then before jack went over I set out some simple rules for him, guidelines to follow for the interaction.

  1. Get their attention
  2. Say,”I made this for you.”
  3. Wait and listen to what they say.
  4. Respond.
  5. Say goodbye and then come back to mom.

He knows these rules by heart now and does amazing with them.  He will recite them by memory before he carries out the task.  The only part he has a  hard time with is the goodbye part, but he is working on it.  He has started asking to go now because I think he gets big confidence boost with every positive interaction he has.  He has made friends with a lot of the staff who know him by name, and has given them some of his pictures as well.  His favorite barista Connor sat on his break with him, Jack shared his markers and the colored peacefully together.  Connor colored him his own cup holder which if it gets lost will be devastating so we keep careful track of it.  Jack likes to complete his “work” and then sit at the counter and watch him fly through all the orders working his coffee magic.  He asks for Connor if we come and he isn’t here.  There are regular customers who know him now, they greet him with smiles and call him an artist.  I just stopped writing for a minute because a woman came over to tell me that his picture is hanging on her refrigerator still.  Last week we were connected with a mutual friend Facebook who I didn’t get a chance to talk to but posted a picture of his artwork and wrote how happy he was to receive it.  The comments brought this weird fluid to my eyes.  People who weren’t even there were touched and so happy about it.  There was another woman who came over to hug me because her son is on the spectrum, he is 18 now.  She said at jacks age she never would have thought of this and she was so happy I have.  We hugged and then talked about what puberty will be like.  I am still recovering from that image and the community I felt with this woman I had never met.

Now that school is out we are going less frequently, and bringing max also.  He likes to sit and read, but did say if I got him a coloring book with bikes in it he would maybe participate.  THANK YOU AMAZON.  Not paid by them either, but I would happily accept as well.

I guess the whole point of this post could be boiled down to a few simple thoughts.

Baristas are magical unicorns who make amazing creations…..with markers and a cup holder, or the silkiest foam EVER.

Being pushed out of your comfort zone a little can open up your world and your circle in the best ways.

Making yourself vulnerable is important to grow.

Post it notes are always in my bag now.

You can never have enough coloring books because options are important.

And finally, my kid is amazing.  I can see the results of all the hard work he has done and he is the coolest 5-year-old ever.  If you don’t believe me you can come to Starbucks with us and see the reception my little artist gets just walking in the door.

 

 

Still Waters

My current state could be described as follows:  Hot as balls (in temperature and pure awesomeness, whatever).  Transitioning from school to summer and hoping it is not a complete shit show like last year.  Under caffeinated.  Recovering from a horrendous infection too disgusting to describe here, but lets just say it was……..humbling.

Jack’s current state:  Excited for his birthday.  Happy that he has had the last 2 weeks home with me during the day.  Can’t wait to go swimming in the lake.  Proud he is a big kid

Max’s current state:  Moody.  Angry.  Filled with tension about the summer, and still struggling with all the changes happening at home and school.  The most important thing though is sad.  Profoundly sad.

 

As mentioned before, it is really easy as a parent to get sucked down into the little shit our kids say and do.  If I step on another minecraft character/lego/wet spot on the bathroom floor/squished cereal I will lose my mother f*cking mind.  You know what i am talking about.  The little petty things people who live in close proximity to each other get mired down in.  Not only related to kids, I can sometimes feel this way towards my husband.  I love him, but something about socks all over the floor can have me envisioning his fiery downfall.  Eventually with all my men, small and tall, I come back to the deep well of love that lives inside me and remember the good.

When max smiles, its genuine and like looking directly at the sun.  He isn’t capable of faking emotion, and I think that’s one of my favorite part of his brand of autism…he is happy when he is happy. He lights up my heart.  He grins with a no good twinkle in his eyes.

Or when jack sneaks into my room one last time every night to give me another hug, or early in the morning just to trace my tattoos with his tiny hands and be next to me soaking up my warmth.  Just to tell me that he loves me more than all the germs in the entire universe or all the leaves on all the trees.

Or the time when we were first married and I was so mad about those stupid socks, that when Craig left for work at 5 am he took the time to empty his ENTIRE sock drawer and spread them in the most unlikely places.  The shower, the freezer, in my car to name a few. It made me fall in love with him even more.  I need him to pull me out of my serious state and make me appreciate the ridiculous.  It works.  We work.

These things can be difficult to remember in the moment when you are busy managing….well, life.  Who needs to be where when, what you need from where.  Adulting.  Sometimes we miss the undercurrents going on because life moves at light speed now.  Just because it isn’t loud, or staring you in the face does not mean it isn’t there, it may just be lost in the moment.  In those little moments between when things are still, moments you can actually breathe, things come up.

There has been so much change for max this last month.  His therapist that visited him in school and that he saw in the office put in her notice.  His ABA technician that comes to our house to work with him is moving, so she is leaving next week.  School is coming to an end (historically a hard time) and his teacher told me that he has been hugging them this week.  He hugged one of his classmates moms at field day.

*Hugging someone may not seem like a huge deal, but max is a bit different.  He doesn’t hug me anymore.  Not spontaneously, I am not sure when he stopped doing that actually. Now if he is upset I have to ask if he wants one and even then, often the answer is no.  He is growing up, but also pulling away.  Seeking out affection has never been huge with him so hearing that he has been seeking it with others tells me he is needing a little more love right now.

That is the thing with max, jack and others like them.  Just because it’s not written all over their face doesn’t mean there isn’t things going on under the surface.  I get it.  I spent this time last year struggling and instead of reaching out I hid.  This is a bit different though.  Often we get so mired down in managing we forget that maybe there is something deeper happening.  The squeaky wheel gets the grease.  If instead of squeaking, your kid is acting like an asshole it can be hard to approach the situation with an open mind or heart.

This afternoon with his aba tech, max was in a horrible mood.  He was brittle and grumpy….it came across clearly.  His teacher had warned me that he would be upset because he found out he isn’t in the same class as his favorite school friend.  He also found out last week that he won’t be seeing his therapist anymore and that his home person was leaving.  We were talking about how it is ok to be sad, but things will be ok when he started yelling at both of us.  Stomping up to his room.  Screamed at her when she went in after him.  It took a few minutes of her talking to him and him snuggling his animals to be ready to come downstairs again.  After he took another break in the room he eventually told her he was mad she was leaving, and that he wished she could be his forever staff.

There it was.  It came to a temporary head of anger, but really he is nervous about the next step and sad inside.  Just because it presents with a red face and clenched fists doesn’t meant that it is not something more.  I feel like often with people on the spectrum we forget that they feel things like every other human but their expression of it can come out different. Sometimes in anger, a shut down, a stomach ache ect.  Hell, I know neurotypical people who have a hard time with this.  The difference is that they don’t have that label that my kids do, and that can be all people see.  Or their behavior is loud and abrupt so we look at the book that is being chucked across the room, and don’t stop to think about why it was launched.   When we have labeled something, it can be hard to look at it from another angle.  Still waters run deep.

I am going to try really hard to be softer.  To stop when I see the fists and ask if there is something bothering him, versus telling him to just knock it off.  Maybe, just maybe then he will start sharing more and screaming less.  If not at least we are trying.

 

 

 

 

 

Putting it in an Envelope

 

I have been sitting here replaying the last few days in my head and trying to imprint all my favorite parts in my brain so I don’t lose them.  I have the memory of a 90-year-old.  Or a squirrel.  Maybe a squirrel with short/long-term memory loss?  Either way….I went to the wedding of 2 people I love very much on sunday.  It was a magical weekend filled with tattoos, seahorses, conversations with new people, cake and sequins.  More than that though, it was a chance to spend time with them that I needed.  Not surprisingly, these two showed up in my life just as things were starting to get rocky.  Funny how that works.  I have added them to the select few people who I can really open up to.  I think of my time with both of them as therapy.    Troy is my therapist/friend/mentor of sorts and something about talking to him makes me feel peaceful.  That is a feeling that doesn’t come easily to me in this stage of my life so I crave it.  Brit is someone I never tire of talking to, and has become a huge resource for me when trying to help max.  He understands him on a level I struggle with often, and looks at him with eyes that are unclouded by the responsibilities of parenting/disciplining him.   Eyes that see with understanding and insight I don’t have because I have never walked in max’s shoes.  Sometimes when i struggle with something I will message him and ask what he would have wanted someone to say to 7-year-old Brit.  Somehow he always says the right thing.  He is also amazing at distracting me when troy is tattooing an area that makes me swear.  Spending time with them is calming to me and helps me shift my perspective.  Brings out the side of me that isn’t brittle and on edge, full of tension for the future I cannot see.  I heart them both.

There was a moment the night before the wedding when i was sitting outside with some of the grooms friends, when one of Brit came out and start telling us how he had been trying to take a nap but his mind was spinning.  All the last-minute crazy details when planning a wedding  were flying through his head.  He was 1/2 sleeping or 1/2 awake but was able to recall that he was worried about the Russians in his dream, but decided as long as he put it in the envelope he would be ok.  This made us all laugh and I quickly picked this phrase up and repeated it to him over and over throughout the next few days.  Every time he looked stressed when we were running around I would say it to him to break through the tension and see if i could get a little smile out of him.  Even after the wedding was over we still kept saying it back and forth…..and will for a while I am sure.

It occurred to me tonight that it’s the grown up version of what we have been taught to say to max.  The 1st grade version of this it “put it in your worry box”.  What max has been taught by his therapist and the school psychologist is that instead of perseverating on all he things that worry him he can create a box in his head and pack them away.  The idea being that when he is having trouble calming his brain at night, he can put those worries in the box and then choose what to take them out and talk about them.  It has actually helped when he is in his super anxious phase……he even put an ender dragon next to the box in his head to guard it and make sure it doesn’t open.  When he isn’t consumed by them he can open the box and talk about it, or just throw it in storage and move on.

Whatever it takes right?  Put in your worry box.  Put it in an envelope.  Light that box on fire. Drop kick that box into the abyss.   Sometimes max throws his into a pit of lava.  Let that motherfucker burn.

What goes in his box?  Lately the lights and smoke detectors are tracking his movements and watching him.  They went in the box.  Before that, the shadows that were breathing and they went in the box.  The box doesn’t take them away, it just makes him more in control of them I guess.  Shrinks them from this giant terrifying monster to an itty bitty little thing that can be packed away.  So, at this point if it helps, we try it because none of us really know what we are doing.  Much like max we are figuring it all out day by day.  Some days our boxes are solid, and some day they are full of holes but at least we are always trying.

This is a practice I am trying really hard to use myself as summer approaches.  Last summer was horrendous on so many levels.  Even though I have changed drastically for the better the approach of it still worries me.  Last year I was massively depressed, over-anxious, irritable as hell.  I pulled away from the people who love me and stopped talking to anyone.  I went radio silent and was just trying to make it through the day.  Even though that girl isn’t here anymore, the thought of going back to it makes me really nervous.  All the energy I spent worrying last year I am going to put away this summer and maybe try to just enjoy life.  I am putting that in my box.  It is going in my envelope.  Well, I am going to try.  If it doesn’t work I may need to borrow max’s dragons.

 

 

 

 

Suggestion Box

I saw one of these in a local business and it made me chuckle.  I thought to myself how funny it would be to install on in my house and anytime the boys had and issue with the management, they could pen a little suggestion.  I can only imagine what would end up in there.  jack can’t write, but I could encourage his artistic side and just have him draw what he thinks is wrong……….Bad idea or genius??????  I can’t tell.

I have NEVER BLOGGED TWO DAYS IN A ROW.   This week has been exceptionally interesting though, so it has my mind in overdrive.  I like to solve problems and move on and with my kids (or any really) this is an impossible feat.  As I mentioned yesterday they both have very different needs.  They aren’t being met currently in regards to their relationship with each other and just in general.  I am kind of at a loss so I am not sure how to handle it right now. I am sitting back and thinking hard instead of jumping to action.  While I ponder I am writing and maybe by the end of this I will have an AH HA moment.

While at a joint therapy session on Wednesday night things went bad.  It has been creeping up little by little these last few months.  Jacks tolerance for how max can treat him has grown shorter and shorter and now it is gone.  Without repeating word for word how it went (it was a 45 min session that turned into and hour and ten min ending in the lobby so I don’t have the hand strength to type it all), the short version is they tried to play together while discussing how their homework from the week before went.  Jack shared how he felt angry and sad about how max treats him, and max told him it was all his fault, that if he wasn’t so annoying it wouldn’t happen.  Jack blew up, he got physical and then max with his skewed perspective blamed that on jack also.  So jack ended up crying and full of frustration, then max got sad and said its like jack wishes he was never born, jack cried harder and we separated them into different rooms.  Then when that went no where we tried to leave and it was a fight in the lobby.  Lots of yelling, angry bodies and “I AM SO MAD” sentiments being tossed around.  The Dr. mostly watched and jumped in when needed, but she got the perfect snapshot of what their life looks like at home right now.  For that hour plus she lived it with me, and I know it struck her because she called me Thursday just to check on everyone.  Just to see if jack was ok.

*Side note, I would like to take the moment to thank the creator of prozac for the wonderful help that I am getting so when everyone is mad and everything is going to shit I can think like a rational person instead of the crazy person with the crazy eyes that lived in my body last year.  Bravo, pharmaceutical people, bravo.

SO.  Currently things are not going well.  Currently they are both feeling bruised and on edge and I am just watching trying to put out fires and soothe them each.  Also, drinking lots of lattes.  I don’t know how to help them each without making the other one feel bad about their part in it.  So maybe, just maybe the suggestion box isn’t the worst idea in the world.  Here are the different names for it I have so far, feel free to comment your own:

Box of anger

Box of things I am pissed about (too long, but accurate)

Box of grievances (Also what I call their therapy sessions…the airing of the grievances)

Suggestions box for making this a peaceful house again………..

 

None of these really grab me.  The title, like my family, is a work in progress.

 

Different Not Less

Everyone is different.  We are taught this early on in preschool. Sitting on carpet squares in a room that smells like tempura paint, glue sticks and play dough we learn that its ok to be different.  Kids that age don’t look at things with as much attention to the social nuances that we adults do.  So boys can paint their nails and wear leggings.  Girls can do and be whatever they want, scientists or princess……..or a scientific princess who falls in love with girls.  At this stage its less about what other people think and more about what you think.  Then you grow up a little and realize other people look and talk, and maybe that makes you feel bad about yourself.  Maybe you just wear leggings at home, or play with dolls instead of beakers because you want the other kids to like you.  Its sad, this transition from innocence to awareness that the world is judging you.  Being different makes you amazing. It makes you more interesting.  Being different is more normal than being normal.

I have tried to impress this on my own kids.  There are people who are born different, in the wrong body or maybe just developmentally.  There are different kinds of families.  Different colors of skin.  Different abilities.  Different levels of acceptance in this world also.  Different families made up by people who come together by birth, for just find each other on the way.  Different places to live, and ways to live that are different from ours.  All of these things make life richer  and more worth the experience.  Different, not less is a big sentiment in the autism community but should be standard practice globally.  I think it should, at least.  We are a different family.  What I am teaching my kids is very different from someone more conservative than my husband and I would.  Maybe?  What do I really know anyways.   This is just on my mind today because of all the different in my own family.

Speaking just for myself, as I have gotten a little older I am more comfortable with all my differences.  I am becoming more of the myself that I am inside outwardly.  When I was younger I was painfully self-conscious about how I looked, what I said, if people liked me.  I was quiet, and funny and liked but on the inside I was always so on edge just waiting for the ax to fall.  Waiting to be exposed as the ugly creature inside that I was hiding.  The best part of all of this is there wasn’t one.  I didn’t have some dark secret past, I just had a lot of self loathing.  I found myself so unlikable that I assumed other people could see it on my skin, sense it somehow.  I remember a particularly bad moment when i was talking (mostly crying, let’s be honest) to my husband about how I had no one to talk to.  I wanted desperately to have a connection with the people around me but I had pulled back because I didn’t want to be around me.  Why would they? He pushed me to ask some people to go out to dinner with me, and I looked at him and asked why would they want to?  His response was a flabbergasted why wouldn’t they want to?

That was a big low obviously.  Super dramatic and tear filled but thinking back on it now it was big turning point for me.  I had said out loud my fear and it was met with such confusion that I mulled it over for days and then started to make little changes that led me to where I am now.  Happy.  Happy in my own skin and with myself, even with all the parts that aren’t perfect.  I take risks now and I am ok with that.  I have become more myself in the last 3 years than I was 10 years ago because I only care about what I think about myself now.  Well, I am trying to.  I am trying to be that preschooler again who does what feels right and not what looks normal.

Which is a very long-winded way to get to my actual point.  I have 2 very different kids with 2 different sets of needs.  Any family with multiple kids does, but I am just going to speak on mine.  How to help them both get their needs met, from us as parents and each other is the current struggle.  Its gotten pretty angry and loud in our house lately as both kids are in therapy and getting in touch with their feelings, and realizing what they want from the people around them.  They are opposite and that is a problem right now because each kid has the right to own their wants and needs.  They are both understandable, but because they are different it is leading to a lot of fighting.  Some physical and some with sharp pointy words that sting.  Craig and I are at a loss with how to make them both feel better without making the other feel worse for just being who they are.

Just because they are different, they aren’t less.

Max wants to be left alone.  If he wants interaction from us or jack he will seek it out, but mostly he just wants to do his own thing.  He wants to play by himself.  Jack can be in the room as long as he doesn’t touch, disturb or interrupt what max is doing.  If he can read max’s mind and figure out how to do it the RIGHT WAY, then he is allowed to take part.  If not, he needs to stay away.

Jack wants to be with max.  Jack doesn’t like being alone ever.  If he is eating breakfast in the kitchen and everyone leaves the room he will bring it upstairs to where I am.  He doesn’t like getting dressed by himself.  He wants to play with Max all the time.  He looks forward to him getting home, he anticipates the fun they could have.  He tries really hard to be silly and playful when max is playing so he can join in, and when max gets mad at him he gets upset and then starts being annoying on purpose just so he gets some kind of attention from him.

Who is wrong?  Neither.  Who is having their different needs met?  Neither.  Who is content?  Neither.  They both WANT from each other, and they both have a gap.

So what do we do?  We have no fucking clue.  We are working with 6 different therapists, some of them joint and some of them one on one to help them both, so eventually one day hopefully we can get them each to a place where they feel like their needs are being met.  That their differences are ok and they figure out a way to coexist peacefully.  Just kidding, they are brothers.  I guess our hope is to help them find a way to accept each other and bend a little to give each other some of what they need.

Until then, I am looking for a referee shirt.

Sparkly Little Spark

It takes a lot of work getting to all these appointments.  On Top of the aba that happens in-house, both boys see therapists (max in school and in Boston, jack just locally), they both have a social skills class weekly they go to and with all the running around we do sometimes it’s hard to tell if it’s all worth it.  We spend endless hours in the car.  There are days dismissed early from school, days scrambling to find someone to get jack off the bus or to watch him when we trek into boston for a 4pm appointment, officially the worst time EVER.  It can be hard to tell if all the running around and jumping through hoops is worth it, but then we get a nudge from the universe that we are doing exactly what we are supposed to and we can take a bath cleansing breath…………I have been taking a lot of yoga lately, just to explain that last sentence.

We have been going to the Lurie Center For Autism the last 3 years with max.  He sees a developmental pediatrician there, and a psychiatrist. They are the ones that set us up with the program that we are going into Boston at Mass General called Think Kids.  There have been appointments for just Craig and I, appointments for just max and in the future there will be some with both of us.  The amount of therapy this child is getting is astonishing when I sit back and think about it, but we have worked really hard to build him this cozy little village of support.  I know he drags his feet through all of this but yesterday for the first time we had a shiny, sparkly little spark of wonderful.

So we were at the Lurie Center for a check in with Dr Howe (amazing if you are looking for someone, worth the trip up to Lexington).  We go into her tiny little room, that’s the size of my bathroom.  This room has seen a massive amount of my emotions.  Max’s too.  I  cry silently, hiding it from the boys as she gently asks me every visit how I am doing, and how max and my relationship is.  She has the kindest eyes and she really cares.  It sounds so painfully ridiculous, but I don’t like when people are too nice to me because I can’t handle it.  I love sarcasm.  Be a little bit of an asshole to me with a  sharp wit and a sense of humor and we will be friends.  Be nice and understanding, tell me I am doing a great job, look at me with gentle eyes and ask me how I am and I will crack.  I will cry on you, or get super uncomfortable and make the situation very awkward for both of us.  I can’t help it.  My own therapist knows this and has only done it a few times, because when it happens the gates open.  Dr. Howe asked me a question that stumped me and shattered my heart at our second appointment.  She asked me what I enjoyed about max.  I sat there stunned for a full minute and then slowly started to cry and had no answer.  I am so busy managing his behavior and trying to stay one step ahead of him to prepare for the next crisis that I stopped enjoying him.  It was the first clue of many that I wasn’t holding things together as well as I thought.

As parents that is our job.  No one aside from you, your partner, and your child is responsible for managing the behavior, feeding schedule, medication giving, hugs when needed for your kid.  He is responsible for himself and his behavior and it’s our job to guide him in the right direction.  Help him to not be an absolute dick of an adult one day (we hope).  There are others who will influence him, grandparents, aunts and uncles.  Friends, teachers, therapist ect but no one else signed up for it though like Craig and I did when we decided to have kids.   For all of us parents we are so busy taking care of all the physical and schedules that its easy to forget about the other piece of why people have kids.  To love them.  To enjoy them.  To be silly with them.  To stay up late and watch movies with them.  To show them with actions instead of words that they are valued and safe with us.

As I sat there wracking my brain for an answer to her question it hit me hard that I didn’t have one.  I wasn’t enjoying him, I was managing him.  My tone when I spoke was frustrated or militant and stubborn.  He was in a bad place at the time.  I was working so hard to keep things afloat that it was like I was emptying a boat full of water with a teacup as all of our emotions filled it back up with a hurricane.  I was not enjoying motherhood.  I was in a bad place.  We were walking around in a state of discontent and labeling it mother and child.

It has been a long road back to happy.  As mentioned before, after our horrendous summer I signed myself up for therapy and saw my dr for a prescription to help me back of that edge of frustration.  Prozac.  What a wonderful little white and green pill.   My friends and family have noticed that the old me, the one before things went to shit is here again.  I still get frustrated but I am not yelling back at my seven-year old….acting like a seven year old with a lot of mental health issues.  Winning a life right now.  I am working really hard on myself and creating the person I want to be.  Just typing that makes me smirk because I sound so zen.  Namaste mother f*ckers.  I am shattering all the things I thought I had to do and doing the things I want.  Covering my body in gorgeous tattoos, dying my hair purple and walking around so much happier than I have been maybe ever.  Middle fingers up with a big smile, I have myself back again.

With this happiness I have been able to slow down and try my hardest to understand max.  See inside of his world, be sillier with him.  Make him laugh when he doesn’t want to.  At this appointment this week when Dr Howe asked max how he was he answered with, “Awesome!”……then proceeded to talk about minecraft in an endless loop that has become largely the only thing he will talk about till your eyes glaze over and tell him he can’t anymore.  She looked at me with a huge smile and laughed and said that was the first time he has said that.  Usually he gives her a terse, “Fine” or “I am annoyed because (insert any injustice here)”.  She was so happy to see him looking so good.  The medications he is on and the therapy he whines about is WORKING.  He is happier.  He hasn’t lost the troubling behaviors that led us to these people in the first place, but his mood is better.  It’s more than I thought was possible this time last year.

So in closing, here is a short list of some of the things I enjoy about Max:

I love the little gap between his GIANT adult teeth and the way he feels it with his finger, checking it is still there.

I love watching him ride his bike.  In his head he is the fastest rider, has no fear and is the best rider ever.  I think he is right.

I love that to sleep he needs to read, and will stay up late to finish a good book.  He reads fast and furiously like I do and I take such pride in it.  I especially love when Craig isn’t home and he sneaks into my bed to read with me and the dog.

I love his crazy brain that understands machinery and technical things that I never will.  He got that from his dad.

I love how much fun we can have on vacations together.  12 hours in the car and not one complaint from him.

I love his face when I dance in the kitchen and he finds it so embarrassing but can’t help smiling.

I love our friday night pizza and movie time.

I love how even though I am a girl, and even though he withdraws a little from us now that he is older, I can still hug him and make things better.  Just no kissing.

 

 

 

Just Keep Swimming

Again, it’s been a few months.  I have missed writing down my thoughts but it is really hard to do when you don’t know what they are yet.  There has been so much happening and it takes me a long time to sort through everything and make plans.  Feel out my reactions to everything, beyond the initial changes.  So here is the update.

First, we survived the holidays!  Historically they are the hardest time for max and jack.  All the anticipation and excitement turns into anxiety and then behavior for them.  We did it though!  This year max was a little less aggravated on christmas day, he removed himself to another room once all the presents were opened and happily put together a Lego set all by himself.  Jack was so happy to be with everyone that he ran around eating and laughing most of the morning.  We came home and max played minecraft for the first time since he lost his kindle in june which made him so happy.  It really was a great day of us just being together and enjoying it.  Our special present to the boys this year was a treasure chest filled with pirates gold, gem stones and skeleton keys.  Max’s (and also jacks since he is into whatever max is) current obsession is keys, so it was so fun to see their faces when there opened them!  It was our best christmas day together yet.

Going back a few months, max had another big near psych eval in October which we got the results of in november.  It was another long day emotional day for all of us.  Max was not in a great place because the medicine he was on was making him withdraw even more than normal, but despite of that he loved staying in a hotel with just mom and dad, eating pizza in his bed, swimming in the hotel pool, and just enjoying being an only child for a night.  It’s so rare that we get that one on one time with his so when we have these big evaluations we try to make a night of it.   The primary objective of this big evaluation was to see what he is dealing with other than just the autism we already know about.  The rage he experiences, the mood swings, how depressed he always seems to be and the things he would say about/do to himself were growing worse, as mentioned in my last entry.  He was doing ok in school but withdrawing himself from his classmates, and even from us at home.  I don’t think he remembered the office, it had been a few years since the last time he was there.  Craig and I talked with the dr before the testing began while max sat in the hall and watched the power puff girls on my phone.  We try really hard not to sugar coat things, but I didn’t want him to hear all the things we were concerned about and think we were saying he was bad.  He says worse things about himself than anyone ever could, we didn’t need  to add to it.

The testing took 4 hours, which he powered through like a champ. He took one break to go to the bathroom but other than that was in there with the Dr. and the team behind the mirror recording his every word/movement.  We talked to the Dr. a little after and expressed that even though we knew it would take a month before we got that final report, if there was anything we could do in the meantime we needed to know.  We didn’t want to waste any more of max’s time if there were things we could do to help him feel better.  He told us when we left to call the Lurie center and schedule an appointment with a psychiatrist there asap.  That it could take a while to get in there so we needed to get started on that immediately.  In the car on the way home we talked very little but I think we were both thinking, “He knows.”  He knows what we are dealing with but needs to put all the pieces to the puzzle together before he can tell us anything.  It’s so frustrating but we had waited nine months for this appointment, we could wait one more for the report.

So we waited.  I cleaned out every closet as usual to keep busy.  I talked endlessly about it with the few people I trust to not slap me for being crazy and annoying.  When the day actually came, it was just Craig and I at the appointment.  I felt a shift coming, walking in there like I did the first time we went for this meeting.  The first time we walked in as parents of a little boy, and walked out as parents of a little boy who also has ASD.  It is a big moment, for any parent. You put your faith that you have the right Dr., that they listened to everything that he said, that they understood what we saw at  home and came to the right conclusion so that you know what to do after.   That’s the whole point of all the diagnosing really.  You learn what areas your child needs help in, so then you can bring them to the right people/therapies after to help them cope.

Anyways, we met and talked for an hour.  The results were in, and they were that on top of ASD max also has ADHD and DMDD.  Now, everyone that is not under a rock knows what ADHD is, and that was not a shocker at all.  If you have ever watched max try to eat a meal or focus on things it is kind of obvious.  DMDD was something I had heard of, that had been suggested in the past but that I didn’t know too much about.  It is new.  It used to be called childhood bipolar but it was changed in the DSM a few years ago because diagnosing kids as bipolar is really controversial.  It is very heavy. Disruptive Mood Disregulation Disorder.  That’s the name for the beast that lives in max that makes him so unhappy.  It is hard to remember those letters so we have been affectionately calling it bipolar light.

So what do we do with all this?  Its been a few months since then and I think it’s starting to settle in.  We didn’t open arms embrace this like we had Autism, because we have a lot more questions that need to be answered.  What does this mean for his future? Does it mean he will be officially bipolar when he is older, or will it change to some other kind of mood disorder later?  Will he always feel unhappy like he does now?  What are the risks when he goes through puberty later?  I like plans, and I want to know whats coming later.  There is no way to do this in life, but it feels more urgent in this situation.  I just want to know he will be ok.

Since this initial day we have met with some really wonderful people who will be treating max going forward, and I feel a little bit better that we have them to call on with all these questions.  Some of them have no answers because not enough research has been done yet.  He will be starting with program at mass general soon that Craig and I will take part in also, and the school has really stepped up helping him too.  He went from one social skills group a week to 3, they are working more closely on helping him talk and respond to his peers more, and when we met yesterday the school psychologist said she was going to make sure that max knew he could come and see her any time.  He has an aba therapist now that comes once a week to work on things at home with him.  He is on a new medication that we are hopeful will help him, because the next options are scary to me with all the side effects.  We are holding steady, still swimming.

As much as things have changed, thing are still the same.  Max is still unhappy and angry a lot of the time, but there are moments in between where the real max comes out and shines beautifully.  I try to hold on to those moments, enjoy them for as long as they last.  I still have to work really hard to remain calm and collected most of the day (mommy is now on meds too, finally) but I am trying my hardest.  We are all trying our very best to keep swimming, because we love each other.  We are a family and even when things really suck, we are still together.  This is our life together, this is max’s body for his life so we all just have to figure out what to do and keep moving.