The Flutter Of Little Bat Wings

Jack turned 5 last week.  Pardon me while my mom heart cries for a while.  I can’t believe the 30 week preemie is gave birth to is now 5, entering kindergarten and growing older by the second.  Much of our home life can center around max because he is the loudest about his needs, and often jack will just go along with the ebb and flow of the crazy that happens.  Just because he appears outwardly unaffected doesn’t mean that there isn’t a lot brewing under the surface.  More and more over the past few months that stuff has been leaking through the cracks, and as his mom I am happy and not.  Let me explain.

Jack has always been the passive one of my kids.  Happy to be wherever I am, doing whatever we are doing.  Up until 4-5 months ago he just went with the schedule like a little soldier, and took the brunt of abuse from max with not a complaint.  He loves his brother.  He just wants to be with max and play, and when max would say horribly mean things to him to keep him away they seemed to run right off his back and not affect him at all.  If he had something and max wanted it and was screaming he would offer it up immediately to appease him.  If max screamed at me that he hates me and slammed a door jack would worriedly come and find me to reassure me that he loves me more than anything.  He always wants hugs and snuggles.  He craves attention from us, always wanting to show us things and tell us things.  His team as a whole was worried about his self advocacy skills last year because he would be hurt and not ask for help, he wouldn’t ask for a snack if everyone else was served one but him and he never wanted to say things were bad to anyone and risk disappointing them.  This is just who jack is.

I would say the change to Jack 2.0 has been gradual, but a bit of a shock at the same time.  The pendulum has swung the other way.  He has started fighting back physically when max says things that are not nice.  He balls up his fists an makes the angriest face he can muster while growling through his teeth.  His anger over the built up abuse he has passively taken for the past couple years exploded and its now everywhere.  He leaps at max with fists at a moments notice.  If it wasn’t so sad, and max wasn’t also my child, I would almost feel like YES FINALLY.   I had seen the little cracks early on and talked to my therapist Maggie about getting him seen by one of the child therapist in the same group to help him deal with the load on his tiny shoulders.  He started seeing Tracy, and things have evolved from there.

Tracy entered right before he started getting really physical which was perfect timing.  She is petite, soft-spoken, young and just lovely.  Even so, talking about negative feelings out loud for jack is really difficult.  The first two appointment she met with him one on one and he said everything was wonderful, there were no issues.  He didn’t want to talk to her and slipped into robot mode and just played as she attempted to talk with him.  The third visit she had called me ahead of time to prep me, and I came in the room with them.  She asked me if I could talk about some of the things that I think are hard for Jack at home and he listened, he gave a thumbs up if I was right and a thumbs down if I was wrong.  During that session he agreed with me that he was angry and hurt with max because max doesn’t want to play with him and tells him to leave him alone all day.  That max calls him names and it makes him angry.  That he doesn’t like being told what to do by max and yelled at if he doesn’t do things max way.  That he really wants to have fun with max and he is sad he can’t.

It was huge step forward just getting him to listen and then respond to us.  The next appointment she brought out feelings jenga (different emotions are written on each block) and the three of us played taking about times we felt these emotions.  Jack is a quiet little sponge, but soaks it all in.  A couple of days later when max shut Jack’s hand in the door and was screaming and crying, jack piped up through his tears and told him, “You are feeling guilty right now.  That is when you do something you feel bad about and it makes you feel bad inside. ”  Max and I both stared at him with shock.  He appears so quiet I wonder if he is paying attention in that room with Tracy and I.  Turns out he is taking everything we say and filing it away.

The next few times we talked about our anger.  She had him think of an animal or object that his mad is.  Hers was a dragon because she gets all hot and wants to breathe fire when she is angry.  He stared a her.  I told the that my anger is like a cactus.  I get prickly and want people to stay away, and if they come close I might prick them.  He stared at me.  We look at him and then each other, quiet for a few minutes.  His little voice suddenly spoke and he said,”My mad is an angry bat.  His name is Destroyer The BAT.”

My kid is so metal. He drew a picture of an angry bat on red construction paper and we left that appointment with the instructions that when Destroyer The BAT came out,  to ask him to go back into his cave and see what happened.  We got the chance to try this many times over the next few days.  We talked a lot about why he came out, and how to put him away in his cave.  We practiced doing things with our bodies to help get that rage out that won’t hurt others.  Tensing his body and then relaxing it, called hard spaghetti/soft spaghetti.  Getting an inflatable punching bag which was an epic fail, max kicked it across the room once and it burst, Destroyer the BAT came out……. moving on.  I then brought him to the y where there is a punching bag and let him go hard on that thing till he couldn’t breathe.  That seemed to work the best and he got really into it, and asks to go back all the time now.

The following appointment we talked about the good side of us that does the right thing, and treats people with love.  There was a lot of focus on Destroyer the BAT and we were wondering if giving him all that attention was bringing him out more, so in comes Amy The Butterfly.  Again, she just popped out of jacks mouth.  Amy is jacks nice sweet spirit and when I see her I make sure i acknowledge that jack is doing the right thing.

I know.  This sounds crazy.  It is crazy.  It works though.   The look on my face when Tracy first brought this plan to the table was probably very doubtful.  Maybe gave the impression that I thought she needed therapy also.  I couldn’t see how telling my five-year old that he has a Bat and a Butterfly inside of him wouldn’t mess him up and give him some weird sort of personality disorder.  Part of me wondered if we would just be screwing him up even more.  This is why I am not a therapist though.  She knew, and explained to me that giving these feelings names and personalities takes the pressure off of Jack.  It helps in his little mind separate Jack from his anger and then he beats himself up a little less when he does the wrong thing.  He also shines like the sun when Amy is recognized.

This concept has kind of taken on a life of its own.  My brother loved jacks drawing so much he ask me to have jack name his anger.  Jack said Rawr the bear.  He loved it.  Max wanted his own so his anger is Killer The Dragon, and his niceness is named Jasmine the kitten.  Several of my friends have started coming up with their own entities as well, and it’s catching on.  So if you made it to the end of this very long post please drop a comment with your angers name.  Or your niceness.  The more you can separate your emotions from who you are is good, it releases you from some of the guilt that we have from just being a human that reacts to life.

******Written by Happy the Dog******

I posted this photo on instagram and my brother commented, “The flutter of little bat wings.”  So he gets the credit for the title of this one!

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.

 

His special cupholder

Conner and Jack coloring

Look and all the colors!

Working really hard.

 

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.

 

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.

 

 

 

In The Deep Deep Dark

It has been a long time since I have felt moved to write here, felt like there was anything worth sharing.  I can’t really say why now is when I am.  Maybe it’s because its late, I can’t sleep and I have been staring at my phone for an hour clicking on Pinterest posts and falling down that rabbit hole.  Maybe its because I have recently realized/had it pointed out that I am not handling things as well as I thought I was.  Or it could be that I finally feel ready to talk about some things.  I don’t know.  If you are here, if you are reading this thank you for caring.

Lets rewind a little.  My last post was a love letter from me to my boys. I meant every word, and still do. Lately it’s been hard to push past all the negatives to live in that love.  When I say lately, I mean not too long after I wrote that letter things began a swift decline.  I didn’t know what to say, and I still am struggling with how I feel about everything now.  When things in my life get rocky I try to approach it with an attitude of openness and honestly.  Often I say things that get me looks from a crowd but I am a big believer that you give power to the things you hide.  If we say those things out loud then they become less scary.  They become something that others can ask about, something that’s ok to discuss.  So here we go.

My oldest, max, is not doing well.  In the years past there had always been ups and down with him emotionally/behaviorally.  He would have a bad month and then a good one, or sometimes longer stretches.  The past several months have not been good.  We are now grasping for good days, good hours, good moments.  No one is suffering more than max because of it, but as a family we are all feeling the effects of it.  His younger brother is starting to mimic his actions and words.  I am at a loss with how to respond to him most of the time because I truly don’t know what to say.  If I ignore it then I am not giving him attention but if I respond it escalates.  We all live in suspense of when he next outburst will be, when the next negative thing will come out of his mouth.  It feels like we live in a parallel universe to all the people around us because what everyone sees in snippets is this beautiful little boy who just looks a little unhappy.  No one knows how deep it goes except for those closest to him and it’s breaking our hearts.

Max is unhappy with his life all of the time now.  He will say it out loud in moments of clarity that rip my breath from my chest.

“Why and I so angry all the time?  Why am I so unhappy? ”

He hurts himself.  Sometimes he will slap himself in response to and answer he doesn’t like, or scratch his face.  Sometimes its with a closed fist over and over till we tell him to stop.  Often when he is in the midst of a meltdown he will slam his hands into the floor, kick things.  Towards then end of the school year last year he was picking at scabs on his face and hands so much he now has scars to show for it.  He ripped out two teeth before they were ready to come out. He appears unhappy most of the time. If there is something he wants to do or a need he wants satisfied that is not met immediately, all this comes to the surface.  There is a constant stream of negative self talk that doesn’t end.

“I am so stupid. I am so dumb.  Everyone hates me.  You are saying I am not needed.  I want to die.  I want to kill myself.  I don’t want to live here with you.  I hate my life.”

There is nothing that will crush the soul of a parent that words like these coming from their child.  He isn’t saying it because he is trying to manipulate us.  He is genuinely this unhappy all of the time. I would empty my bank account, empty my body of blood and marrow to fix it.  My husband and I talk about this nightly after he goes to bed.  What do we do?  What can we do better?

I feel like I am sucking at this mom thing.  I don’t say that for a response, it is genuinely how I feel.  I am so strung-out-on-edge over this that I am constantly in a state of low-grade irritation with him.  He is always unhappy with me, and I never know how to satisfy him.  When I do, the next hurdle is lurking insidiously around the corner.  My body is knotted up with tension until he is peacefully sleeping at night.  I thought I was managing  until recently when talking with some of my friends.  I have become withdrawn this summer from the people around me, which hasn’t been fair to them or myself.  I am still trying to work out why I do this because it doesn’t serve me at all.  When things get hard I back off of everything until I feel like I have a good grasp on the problem.   I pull back and get quiet.  Truly, I never realize consciously it is happening.  Normally I share my every thought/emotion on any other topic so not being able to articulate the BIG things is confusing to me.  I still haven’t really worked out what to say on this whole matter.  When talking to a friend recently she pointed out that when people ask how I am, I answer with whats going on with max.  How max is suffering through this shit.  I never answer with how I am.  My knee jerk reaction was that couldn’t be, I am so honest about whats going on.  I tell my friends everything.  It hit me a few seconds later as I tried to articulate my feelings that I really don’t know what they are.

After really letting this sit in my head for a few days, this is what I have come up with.  I feel like we are in a waiting room, biding our time until it’s our turn.  Max is going for a full neuropsych eval in three weeks to see what we are missing mental health wise.  I feel like until I get the results of this I am on pause.  Holding my breath for a plan of attack, a compass with some direction to it.  I can’t think too much about the future, because when I do I go to a crazy place that’s not helpful.  So I lock those thoughts up in a vault I try not to open, because if I do I won’t be strong for my family.  I can’t fully admit out loud how worried I am because it makes it too real right now.  I don’t know what to call the monster that lives inside my son’s head.  Once I have a name for it, then we can talk about it.

For now, he is in therapy.  I will be starting soon also. (you all can breathe a sigh or relief, I do realize I need it and it is a priority.)  He is having regular check in appointments with his Dr. at the Lurie Center.  He has started medication (not that we are seeing any difference, but we are just dipping our toe in that pond.)  Coming to that decision was incredibly painful for us as parents but it was time.  He starts school in two days so he will have a steady routine soon.

Its time to come out of the deep deep dark.  We can’t pretend we aren’t suffering, or that things are easy.  I will talk about it if you ask as best I can.  I am working hard on being better to those closest to me because pulling away wasn’t fair to them, or to me.  We are here just trying to make it through the best we know how.

With love, caffeine, yoga and the people who refuse to leave when the shit hits the fan.  People like you.

The BIG day

So we had Max’s evaluation done two weeks ago at Mass General, in their leap program.  It was the evaluation that we waited 8 months for and a lot rides on the outcome.  Whatever the diagnosis is, it determines what we can fight for with the school system, give us a leg to stand on.  Since our town system basically rejected what his current Dr. said my hope is that since they are a  large and well-respected program  that they may actually listen this time.  It was a nerve-wracking day for sure.  One that I had waited for over a year really.  I know most parents don’t want their kid labeled but I feel differently.  We have been out in no mans land for over a year searching for an answer to all the odd behaviors.  I have learned so much but at the end of the day I am still stumped at what it could actually be.  I wouldn’t be shocked at all if they said autism, but I wouldn’t be shocked if they said ocd either.  I would just like an answer so we can close the book on the searching for answers and start figuring out what our next course of action there is.  What to ask the preschool for, what books to read about it, what support groups to attend so I can vent and seek help, a name for all the unfathomable wonder and confusion I have when I look at him.  His mind makes me simultaneously awed, confused and scared.  The details he can remember about obscure things make me smile sometimes because I can see them being so useful when he is an adult and he finds a job the interests him.  The hyper focusing on what I am wearing and whether my sleeves are up or down serves no one really though.  Hoping whatever label we get will shed some light on that one.

We got a hotel room in boston the night before and max was in awe of the whole thing, the beautiful view of the city, our massive bathtub.  In the weeks and months after the meeting with the town I was privately consumed with self-doubt about what I see when I look at max.  I kept hearing the voices of the women in that room making it out to be my imagination and I considered canceling this appointment.  I don’t think I could have handled one more person looking at me like I was crazy, or worse like I was searching for a diagnosis just to get services.  I also considered asking my own dr for some anxiety meds, because if there is nothing wrong with max it has to be me.  Maybe I just need something to calm down.  Being a mom to a kid that’s different is a crazy place to be.  I get jealous of my friends who can bring their kids to fun things and watch their kid enjoy being a kid.  This doesn’t happen for us.  All of this was reaffirmed the night before the appointment, we decided to got to a little pasta place that was kid friendly down the street from our hotel.  It was small, dimly light, and loud.  There was max, my sensory sensitive kid not able to eat, covering his ears because of the noise begging to go back to our room.  I was telling my friend about the mistake we made later, we should have known I said.  We should have just ordered room service, or gotten take out.  Her take on it was I think you needed this affirmation that you are doing the right thing.  She was right, I did.

Sitting with Craig filling out all the paperwork while he was being tested it occurred to me that in the business of kids like these, a lot rides on letters.  The people with lots of letters after their names are responsible for attaching  letters to my kid.  Whatever they are.  Add.  Adhd.  Ocd.  Whatever those letters are open or close doors to us.  They are the keys to us getting help, they have insurance codes attached to them.  These letters are heavy. They contain a future, a parents hopes, self esteem for the kid who one day will figure out that he is a little different.  The people that give these letters away are so important and vital i was so scared to talk to them, i didn’t want to mess it up.  I felt like I was walking into a test unprepared even though I have had four years to study my offspring.  I was terrified of seeming like I was searching for a diagnosis.  I was scared that they would think the same thing as the school, that I was crazy.  It didn’t happen though.  She noticed some of the things that we were concerned about (diminished eye contacts, preferring parallel play over interacting with the woman testing him, fixating on some things) and it went well.  All that self doubt and making myself crazy for nothing.

We get the results of this meeting in fifteen days, not that I am counting.  I really have no idea what the answer will be and Craig and I don’t care.  Its more important we get an answer, not what it actually is.  Then we can go back to the school, sit down with a room full of people and hopefully get some help this time.

Take a Break.

I have been taking a break from writing out my thoughts and feelings.  It has been about a month since the last time I blogged, I just didn’t know what to say.  My emotions have been all over the place and I thought maybe with some time and space I might be able to put is down concisely, what I feel.  I honestly still don’t know, but I am going to try it anyways.  So much has happened in the past month I feel a little like I just stepped off an airplane into a place i have never been before.

We had the meeting with the town special ed department, which was an epic disaster.  I am not using epic in the the slang version that we all do now, I mean a literally the biggest disaster ever.  It was a room that had made up their minds before we walked in, and they were not interested in much we had to say on the matter.  You know, the kid we had raised for the past 4 years.  In many words, the tone was that he was acting ok at school so the problem must just be at home.  No one said it out loud, but I could read the subtext clearly.

You are just an overly concerned parent.  Boys will be boys. My kids have some of the same issues and they are fine.  We aren’t worried and we don’t take you seriously.  I understand you are frustrated, but thats your problem at home.  Something about his home life is making him act that way.  Perhaps your parenting is the problem.

On many levels the meeting was a disaster, but mostly I think it hit too close to all the fears I have in the small place i let no one see.  What if I am the problem?  Then I mentally slap myself and remind myself of all the things we have learned and been through and just put my head down and keep going.  I cant let a room full of people who saw my son for an hour and a half tell me i am full of shit.  A lot of the stuff I heard going on it the room when he was with the child psychologist was glossed over, half of the stuff he said and was doing in that room didn’t even make it into the report.  When I asked why and gave examples, her hands started to shake and then the loudest woman in the room started going on and on about the avoidance tactics her own children can use.  She also went on to say that Dr. Levine gave him no diagnosis (he did, adhd, anxiety and sensory problems) and when we said that she said she didn’t believe in those diagnosis’s because it was impossible to diagnose a child before the age of 7 (not true either, and I didn’t see her medical degree hanging on the wall anywhere).  The ot basically said his teachers don’t see an issue so I don’t either, and started talking about the sensory problems her child has.  She only backed down when I told her I wasn’t telling her her kid didn’t have issues, so why was she telling me mine didn’t…..and then started to cry.  I could go on and on about how I felt and what was said, but the results were this: since the social problems he is having are not impacting him academically, they can not offer us help.  They did however have an open spot in their preschool program that is taught by special ed teachers, and he transferred and had his first day there this week.  SIlver lining.  Smaller class, trained eyes on him and this is the school he will be going to till midle school.  So the fight begins now.  We saw Dr. Levine this week and he wrote a very clear and simple letter to them identifying his diagnosis so they cant ignore it, or fluff it off.  I don’t think it will make ant difference to them but I look forward to politely handing it over so it can go in his file.  Suck it.

In happier news, his friend birthday party was a smashing success.  They kids had a pizza picnic, they made edible necklaces, a popcorn bar and watched Lilo and Stitch together while the moms had pizza and chatted in the kitchen.  It was so nice and we made some really nice memories with our friends that night.  His family birthday party was good too.  Max wasn’t so into all the relatives wanting to talk to him and had a few moments when he was really rude to some, especially his uncle mark.  I think it was just a lot of people wanting to talk to him but after the second hour he was happily playing with his little cousin.  It was so nice to see him enjoy her, running around the kitchen and playing in his room.  She is two years younger and likes to tell max what they are doing so she is the perfect playmate for him, and it was heart warming to see the two of them playing in the tub and enjoying a snack with each other.

He started behavioral therapy too.  Thus far we have only worked on making eye contact , and listening to people when they talk and responding back appropriately.  When we see people I remind him of what kate asked him to do, and it’s working. Every time I catch him doing this my job is to praise him and give him an m&m, which is an excellent motivator.  It has been amazing.  He had a conversation with a friend at the dr. office the other day all on his own and a his friend leah noticed it after a play date and told her mom that max really listened to her today.  Proud mama here!  I feel like these little successes far out weigh the negative right now.  Its nice to see him enjoy things a little more each day because they aren’t as hard as they were the day before.

These are the things I am choosing to focus on.  The happy moments.  The ones where look at him and think, there it is.  He is getting it now.

All the kids watching the movie at Max’s birthday.   Max is the second from the left.