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.

 

 

 

 

 

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.

Calm Before the Second Storm

We have been living in the in-between since our last appointment at children’s.  Jack was diagnosed but it didn’t change anything at home.  All the paperwork was submitted to his early intervention people, and they submitted it to the agency that will be coming out to do his in home aba therapy.  This process seems like it took forever.  The woman from the aba company came out once to meet us and explain what they provide, and then again to do their own evaluation to see where they need to focus with jack to help him the best.  The whole process has been slow which has been fine with me..

Post diagnosis with both kids there was a lull of emotion.  A period of relaxing.  Letting go of the tension of holding it together.  Leading up to it there was a lot of inner chaos (mostly with max, not too much with jack) and then after we had some time to just let it settle in.  I have this urge to soak up the massive about of TIME I have right now because once we start with all these services it will disappear.  We tentatively said that we would like 10 out of the recommended 25 hours of services.  Right now he has 1 hour of speech, 1 hour of regular early interventionand then 2 1/2 hours of group a week.  Fitting this in between max going to school, me having physical therapy 3 times a week (this is actually replacing me being at the gym 6 days a week so that’s a break), and then fitting in grocery shopping, errands, seeing our friends.  Squeezing in ten more hours a week on top of this is daunting.  Letting someone into my house to correct my parenting is also daunting.  I hate when people tell me what to do.  It will be hard to put aside my ego as the all-knowing mom of my kids.  Thankfully the aba way of doing things is not unfamiliar to me and we have practiced some of the stuff already.  It is just going to get really real in my house.  As much as I know receiving six months of aba that we won’t have to pay for is a gift, I am not in a rush to start.

I feel this new season in my job as a mom coming like the winter.  I am simultaneously looking forward to it and dreading it.   It’s going to be so much work, but it all for the good.  This is where we were with max 2 1/2 years ago and I didn’t know that there were the resources out there.  Starting off younger with jack, we get to help him understand the world around him earlier.  Give him the tools to cope with situations he will be in.  The best part for me about all this help we will be getting is that next time we go into that room with the preschool (sometime in march), I will have a team of people who have been helping jack since he was a baby.  That part is super nice.

They come tomorrow from the agency to finalize the service plan, along with the ei woman jack has seen since he was 2 months old.  I will be signing more paperwork, we will  be working out a schedule and then soon after Jacks village will get a lot larger.

 

Autism Squared

We went last thursday to Boston Children’s to get Jack tested in their Developmental Medicine division.  As previously mentioned, the appointment was very fast this time, it took only a month of waiting versus the 9 months we waited with max.  The results came back much faster as well, both Craig and I were shocked when the dr told us he would see us six days later to give us the report.  I was stunned speechless for a moment which never happens to me.

Craig and I met there, a half hour before the appointment.  The last time there was such a massive build up of emotions.  I had been called out in so many different arenas for thinking something was off with max that getting that diagnosis was like getting my sanity back, mostly.  WIth him there was the massive release of emotion and I could take comfort in the fact that as his mom I knew something was off.  This time with Jack I didn’t feel much of anything leading up to it.  I was massively curious what they were going to say.  I wondered if jack would show them everything that we have seen at home.  I wondered if they would take them as seriously as I did.  Just in the past week there had been new concerns that have popped up at home.   I was kind of in the middle.  It wouldn’t have made me upset either way, I just wanted to know what I am up against.

My other main focus was the chocolate croissant that I was going to eat.  If I was to be perfectly honest, this was my major concern.  I have dreams about buttery flaky pastry containing chocolate.  With every major hospital visit we have had there is an Au Bon Pain within my eye sight and I am drawn to them like a moth to flame.  Over the past year I have lost 40 pounds, but my inner fat girl gets super excited when I see that sign.  It makes me happy.  Pastry makes me happy.  Incidentally, if you can get to a Trader Joes they sell them in the frozen section and they are to die for.  For real.  If you ask any of my girlfriends what I said when they asked if I was nervous about last Thursday’s appointment, they will tell you my only concern was getting that croissant.  Priorities, people.

Which brings us today.  Jack was also diagnosed with autism.  There were a number of reasons that I won’t go into but there it is.  I have two autistic children.  With max I was so emotional and relieved, I cried off and on for days.  This time I don’t know what I feel yet.  I know that it means a lot more work for me.  I know that he is still the same redheaded devilish child I left napping when I went to boston this afternoon.  I can’t help but be a little sad only because for a brief time with him as an infant I thought he may be the one who doesn’t struggle like max will.  My one typical kid.  That pipe dream flew out the window pretty fast once he started talking.  I work so hard with max and it is sometimes mentally exhausting, sometimes physically.   Now there are two of them so I guess I am mourning the image I had in my head when we first started having kids.  I think most parents do this because we never fully realize how tough things get once they develop past infancy.  I may just have it a little harder, but certainly not the hardest ever.  I also know how much more work I will be doing, and time that will be spent teaching jack and I am choosing to not think about that tonight.  Not yet.

There is also a part of me that is incredibly proud of this quirk.  I know that my children will see things in the world that most people will miss.  They will remember things I wouldn’t think to.   They will change people’s minds about the face of autism.  The image a lot of people have even with the boom in research and education about autism is the non verbal child who can’t care for himself.  That is not my kids.  They have autism but its high functioning.  I hope that they can enlighten people as to what that looks like, maybe help other parents dealing with a recent diagnosis to know that autism doesn’t mean anything flawed or damaged.

When we got home I told max that we found out today that jack was just like him.  His response:

“I know.  I have been around a lot longer than jack, I know he was just like me.”

Big words for a little boy, but there is autism for you.  See through all the bs and nail it.

 

 

Learning to Play

I have finally almost completed the playroom transition that’s taken me months.  Today is the first time they have gotten to use is in its new for and I have to say, it was a stroke of genius.  Not mine, my friend Jen (who has been mentioned so many times in this blog that she should have her own).

The reason for all this change is the struggle we are having with “play skills”.  When max was little we didn’t know any better and just watched him play with the oddest things.  Vacuum cleaners, fans, batteries, light switches ect.  The mom I am now looks back at that time and laughs because I should have known then that maybe things were off.  He struggled with the kind of play I saw his peers engaging in.  He couldn’t comprehend the act of copying me in the kitchen with his own play kitchen, other kids would make pretend food and play restaurant but that kind of thing had to be taught to max.  Even more painful than the teaching the skills was explaining to him why they were important because he didn’t care.  He still doesn’t, but he does it because he is old enough now that he understands that his peers are not going to talk about vacuum cleaners with the same avid interest.  It is still a struggle for him in social situations though.  He doesn’t really want to do what other people are doing, he prefers to play by himself but he is slowly learning that it isn’t acceptable.  Slooooooooowly.  It’s a fight we have every time we play with others.

Then there is jack.  While he doesn’t isolate himself from others he doesn’t join in either.  Other kids his age will be playing with cars, he will clutch them under his chin and walk around afraid to set them down.  He has had EI come every week since he was two months old and since he learned to sit up on his own they have been teaching him how to play.  WIth them he will endure but in a free play setting he has less than zero interest in playing with the other kids.  The most interesting this of being awake for his development (i feel like I was asleep the first time for max’s since I didn’t know what I was dealing with) is that I have to TEACH him how to play.  It’s the weirdest thing.  Most kids learn by watching and imitating but Jack has to be sat down and taught what to do and then it needs to be reinforced over and over.  There is no sitting back and relaxing with this one because I know where it leads now.He prefers to wander the house picking things up and setting them down but aimless.  The most glaring example of this is when we were remodeling the kitchen a couple of weeks ago.  The play room was blocked off for a week and a half and neither of my children missed playing with anything.  They didn’t even ask.

When discussing play skills and our struggle with Jen she gave me an amazing idea.  Take all the toys, put them in their own containers and take them out of arms reach.  If they want to play with something they have to ask (forcing them to speak to me for something other than food) and when they are finished it all goes back into the containers and back on the shelf.  What would happened before is they would take everything off the shelves and not really play, just go from object to object till everything was out and too overwhelming and then just play with anything that had wheels to roll.  Classic.  This afternoon is their first time using our autismfied playroom and they are both so much happier.  They are playing together, which is rare.  They are playing appropriately because its easier for me to monitor what they are doing since I know exactly what they are playing with.  They are mostly engaged with me and each other.  Its working.  It looks strange now with all the shelves on the floor that are empty and I have no idea what to do with them now, but all that matters is they are playing.  PLAYING.

 

 

focused and playing together

Jack’s Turn

So as I mentioned a couple of weeks ago, it’s now Jacks turn to have the same evaluation that max had. When we set it up for Max we went to the leap program out of mass general, and I they made it so easy for us. The Dr he saw was so nice to me when I teared up in her office and so gentle when she gave us the diagnosis. The only thing about it that I didn’t like was that it took nine months from making the appointment to actually being seen. That number says a lot about the number of kids being tested these days. There are a few other big name hospitals that do the same testing, but the wait was just as long. Back in June when our pediatrician recommended Jack be tested too I called the top three and i was shocked when Boston Children’s wait was only four months now. I am not sure if they streamlined the process, hired more staff, or just are seeing less kids right now (unlikely) but I was delighted. This meant five less months wondering about the outcome. I submitted the paperwork three weeks ago knowing they would call me to schedule and took another deep breath, it was out of my hands.

They called this morning. His appointment is four weeks to the day today. I am a seasoned veteran of this process and yet I found myself eating raw cookie dough and texting my bestie that I want to puke. Why? I have been through it once. I am aware of all the paperwork that we will need to fill out there, how to pack a bag for the day. I know what a diagnosis means at this point. I have a massive support system I didn’t have before.

I think it’s because it will be here in seconds. We are already halfway through september and its flown by, so October 16th will be here before I know it. With max I had 9 months to prepare myself. The long wait was torture and gave me lots of times to wonder if maybe I had lost my mind. I almost cancelled the evaluation at one point. It also gave me lots of time to figure out my feelings one way or another. If they had come back and said that he was a 100% typical child I probably would be taking an anxiety med right now, I knew I would call my Dr. not long after the appointment to ask for one. Then I would have told everyone that I was crazy, my friends and family would have ben reassuring and life would have gone on. I also had time to come to terms with what autism would mean for us. It opened up so many more doors for us and programs for max with the official paperwork. He plays soccer now (plays is being generous), is part of a wonderful ice skating program that he has thrived in. It opened up a community I wasn’t sure I could take part in when I just saw something off but it hadn’t been confirmed. Its opened up conversations with my family as they do their best to understand how autism works for max, and how to help him. I could go on and on and on.

WIth Jack, I am not sure how I feel. I knew in my heart of hearts what they would say about max. Jack shares so many of the signs I saw when max was little but explained away. That is where I get stuck with him. The spotlight is on Jack far brighter than it was on Max because of all we now know. So we could be wrong, and maybe he is just a quirky kid. Or he could have autism like max and we would be able to get him help earlier. I bounce back and forth between the two sides so often that sometimes I have to force the thoughts out of my head. Bravo tv was made for this exact purpose. I just need a fresh pair of eyes that are well-trained, so back to the evaluation room we go.

Back to school

Thank GOD. We had a wonderful summer, but the last few weeks were hairy. Once macs summer “camp” ended at his school we had no routine and he was a hot mess. Routines and autism are besties, in case you didn’t know. We went on a family vacation and it took three days of max not napping for me to almost snap…..and then run out to buy some rum.

Taking a family on vacation when one of them is like max can be a gamble. While he loves his vacation bed and the beach by day three of trying to have all it was made very clear that although we were in vacation mode, max’s autism wasn’t. He still needed a nap, and I probably should have brought the sensory sheet for his bed so he could calm his body down. I really struggled because I look around me sometimes at all the other families and I just wish for once that we could just do things. Not have a plan, go to a crowded place to see things and not watch my son filled with sensations his body can’t make sense of and having a meltdown. This is the only part of my life as max’s mom that I constantly struggle with. THe way I want to do things and the way that will be the best for my kids.

I have these idyllic memories of the cape house from my own childhood, and part of it was going to the bakery right down the street with my sister. I was so excited to take max there and make it a tradition with him. I do this every now and then. I plan something in my head forgetting about him and how he will react to the environment. If the seasoned special needs mother in my had thought about it I would have known that the amount of people, noise, and the tiny room would have set him off. In my head though, it was rosy colored and full of sunshine. Max with big smiles as he ate his donut and me cherishing the moment with him. I will give you one guess how it went. He was a disaster and I got so angry it was hard to be nice to him in the moment. I was furious at him for ruining the moment, something i wanted to make special. We walked back and by the time we were at the cottage his tears were dry, and the ones I couldn’t shed in front of him were gone too. once I sat back and looked at it calmly later I was so ashamed. I was mad at my four year old for being who he is and wrecking my hallmark moment. I should have just been mad at myself for being such a moron and expecting it to be different. These moments happen every now and then as parents. When you are humbled by how little you have learned even though you feel like you have it together. We got over it and later that day Max learned to ride a bike without training wheels, and the tears were happy ones.

September is here, bringing with it the return to school. He has only been back for 2 days but already he is much happier. He is going five days a week, riding the bus, seeing the bcba once a week and i am so relieved. I feel like all parents look toward the return to school at the end of the summer but my joy may be at another level. I am so happy to see max happier.

I wasn’t going to make this public, but september also is the onset of another season of waiting for us as a family. At Jacks 2 year old check up I filled out some forms and his dr recommended that jack be tested for autism as well, since he has some of he same characteristics. I just sent all the paperwork to children’s hospital on wednesday. Much the same as max I don’t have lots of “feelings” about this, I more just want the answers. It won’t shock or devastate me if he is. It will just be more of the same, and I think as I learn the better person I am for it. I am the perfect mother for my kids. Not a perfect mom, but perfect for them and thats enough.

Fear of losing it

Back when we finally got max on an IEP my best friend made a comment that has stuck with me.

“My goal for Max is to get him off an IEP in two years, i think that’s realistic.”

What she meant was that by then he will have had services for a while and that hopefully they will have improved him so much that he won’t require them any longer.  Super reasonable and smart, just like her.  It sent me into a crazy inner panic for 10 min that I got over but I still catch myself thinking about it often.  I know that’s the goal, and it would mean that he would have learned exactly what he needed to.  It would meant that the special ed teachers had done their job and whipped him into shape.

It totally freaks me out.

I don’t think it’s that we fought so long to get services and I don’t want lose them.  I know max is at the tippity top of the spectrum and eventually won’t need them anymore.  I just don’t want him to be the kid that the teacher overlooks when he is older.  My husband (who isn’t on the spectrum officially, but displays some like characteristics……) was the problem child in school.  He was incredibly smart, didn’t have to try to pass classes but was bored and mischievous and thus ended up causing lots of trouble.  Come to a family dinner with his brother and sister and eventually the stories start coming up.  I love listening to them talk about all the trouble he got in.  I enjoy picturing the little boy he was doing these outrageous things because its funny and sweet.  I adore him.  Max and him are so alike in so many ways in the beginning before I really clued into that there might be something wrong, everyone just said that’s exactly how my husband was.  It’s funny and sweet to picture until he got to middle school and high school.  Then he was the problem in the class room.  Outrageously bored and up to no good, he pissed of a lot of teachers.  He couldn’t focus in the classroom or just chose not too, and refused to do any homework so he was put in the least challenging classes.  He wasn’t challenged at all so he didn’t try, which left him with lots of time to be a pain in the ass.  One of his high school teachers told him he wouldn’t go to college and would end up pumping gas.  Thankfully Craig isn’t super sensitive because no kid ever deserves to be put down like that.  He handled that with his usual “fuck off” attitude and is an incredibly successful man now.  That is where this fear for max comes from though.

Getting the diagnosis for me was a relief, on that I embraced.  It got him help we couldn’t pay for.  It gave me answers I needed so I know I am not crazy.  What made me the happiest though is that now when he has a bad moment, or is having a hard time there is an explanation I can give that people will understand.  His teachers, family, strangers.  Like when he was curled up in a ball under the stroller last fourth of July and being incredibly nasty to anyone speaking to him.  If I had known I could have explained it instead of sitting there silently frustrated with him for acting so inappropriately.  I could have said he is autistic and is having a hard time.  It’s not that i want him to walk around wearing a sandwich board saying it, but it’s nice to hold onto in my mind when shit is going down.  That I can say the magic A word and people will nod their head quietly accepting and like they know what that means even though no two kids are alike.

So I guess my point is that him being off an IEP scares the shit out of me.  I want the teachers he comes into contact with at school when he is in those tough middle to high school years to know whats going on.  I want them to be nice to him and not immediately file him under “this child is going to be trouble” in their minds.  I don’t want him to slip through the cracks because he is so much like Craig.  That is my fear about having no services.  Its pretty unrealistic, I know.  I am his mom and can be as annoying as I want to when it comes to contacting them and talking to them.  It’s just that when I look at my little guys face and see that he is struggling and just needs someone to help him, it hurts me to think about him being misunderstood.  I know he has to grow up.  These are normal fears every parent has.  We aren’t even close to needing to worry about that period in his life, it’s just my crazy brain leaping ahead to the future.