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.

My Letter To You

To My Autistics:

My little loves.  I needed to write this to you because on those hard days when it seems like nothing I say is right, or nothing you do is right, you need to hear this.  I want you to know the dreams I have for you are still intact.  Nothing changed for your dad and I with your diagnosis.  I still see you doing wonderful things in the future.  I see you struggling, sure. Mostly I see you quietly making the world better just by existing.  I know this will be true because you have quietly (sometimes loudly) made me better since I have met you.

I have learned from you to be more patient.  To look closely at you and your body for your signals.  I have learned about the joy that your achievements bring the team of people that surround you, something as small as letting your little hands be messy and not crying.  You have opened up a world of sounds, smells and textures to me that i didn’t pay attention to before.  Now when the tag on my shirt itches me, I smile and understand you more.

I still stare at your chest rising and falling while you sleep like I did when you were an infant.  Most nights before I go to bed I sneak in just to look at you.  I look at your beautiful eyelashes and the curves of your cheeks while you rest and I am thankful that at least when you sleep, you don’t look worried.  You may not realize this but your face is pulled into so many quick expressions of frustration and triumph with such speed during the day i sometimes feel tired just watching it.  When you sleep, you look peaceful, something that I don’t see often when you are awake.

I know this is hard on you.  Please know that.  I see you struggle.  I see your anger when things get tough for you or you have to participate and have no interest.  Please understand I have to make you do these things, one day I hope you will.  If I let you retreat into your little shell with your specific interests without making you interact with the world around you, you might forget how.  It seems unfair, I know.  You want to interact on your terms, and I understand.  You are forced to interact on everyone else’s instead.  You don’t understand this because you are so little and I must seem mean. I am the one forcing you to sit and do your work.  Making you greet people and interact with them.    It’s no wonder that I am the one you get so angry with, the one you scream at. I hope one day when you are older and these things have become habit you will understand.  I was relentless in this because I know deep down you feel the same way as everyone else.  Inside you crave that connection, you just don’t know how to do it in the way everyone else does yet.  It’s not that you don’t like people, I know that.  I see it in your face when you tell me a joke, or try to teach me about driveshafts.  You are trying to connect with me, we are just on different wavelengths.  I see it come out when the stars align and you play with your friends and laugh, you love to be silly with them.  I love you for your magnificent brain that sees things in a light so different from mine.

I am not perfect at this.  That temper you have?  The stubbornness?  That comes from me.  I try my hardest, and when I lose my patience I am really sorry.  There is no manual for me to do this, you and I are just trying our best.  Somedays my best is awesome, and somedays I go to bed thinking about all of the ways I can do it better.  Try harder.  Have more patience.  My lifes work will be trying to get this right.

I won’t ever leave you.  No matter how mad you are at me, no matter what horrible things come out of your mouth.  Even if you hit me, I will stay.  I am your person.  I am your mom.  I carried you inside my body so I know you like the back of my hand.  I love you more than I love coffee, which as you know is quite a lot.  I will do my best to understand your anger directed at me as the only release you have thats safe.  I will hug you after every meltdown, or let you have some time to yourself if you need that more.  A little piece of my heart breaks for all you have resting on your narrow shoulders.  I see your future as so bright and I hold on to that through all the screaming and all the tears.

I love you.  I love you more now than when we first met.  I love you more because of your autism, because you and I have to fight harder to come together and when we do, its sweeter than I ever would have imagined.

Mom

It’s Not You, It’s Us Together

The last time we talked it was 2 months ago.  We were just at the beginning of the school year and finding our footing with the new routine in our lives.  School started and there were lunches to create/pack, bus schedules to memorize and teachers to meet.  Its been a whirlwind and I can’t believe that the time has passed so quickly.  Here we are.

Both of the boys are on IEPs now thankfully.  Jacks transition to preschool was the opposite of max’s.  Max we switched to the public program as a regular student after they evaluated him and told us he was 100% typical, he was then diagnosed with autism, we then went back in the middle of the year and ironed out his IEP, and he spent the remaining year and a half in preschool with a little extra help.  Every meeting with his teacher the second year I felt the vibe from the teacher I was nuts.  This was my introduction into this process.  I thought in the beginning it would be easy, they would see what I saw and offer help from the goodness of their hearts because surely they would see us struggling.  That is not how it works.  I learned fast I had to play dirty, wait for the mistakes and then use them to my advantage.  Call their boss in and make her cart of the team.  This poor woman who runs the Special Ed program for the town now has to come to his meetings, as if she doesn’t have enough to do.  It works though.

Jack however was like a dream.  We walked in with a team of people, wrote his IEP in 45 min and it was done.  His teacher (who max had the first year) is on board, has his number and is working on things in class with him he struggles with at home.  It is night and day from max.   Perhaps because she has been down this road once with me and knows I can be a royal pain in the ass, or because jack can look a lot more special than max.  I am not sure honestly, but it is nice.

Here is where it get hard for me.  I hate being the bad guy.  If I think someone is angry with me it eats at me and is the only thing I can think about.  My good friends (they know who they are) know that if there is something that I am upset about or uncomfortable about, I need to talk it out.  I don’t like things being weird or left unsaid.  I prefer to lay it all out on the table and talk so that in the end I know where we stand.  I am like this with my family too, if there is an uncomfortable topic I am the first one to bring it up so we can talk it out and move on.  I am sure this is annoying to people sometimes (sorry) but it is who I am.  I can’t help it.

When it comes to my kids teachers I have to be the bad guy often and it isn’t a role I am comfortable with.  It is my job to make sure that their IEPs are being followed because I learned that if I don’t things slip through the cracks.  Thus far my experience with them has taught me that being nice doesn’t work, I have to point out what they are doing wrong when I see it so it can be corrected.  That makes me really really annoying to them and I get it, I really do.  Their job is to follow his IEP, my job is to make sure they are.  If something is not being done I have to call them on it, they get annoyed at me and I feel like a dick.  It works though.

Here is an example.  This year max is supposed to have a communication log, a weekly email from his teacher to me telling me how he is doing with his goals that week.  A check in so I know whats going on, because last year I felt in the dark.  I hadn’t gotten it at all in september or october so I emailed his teacher and asked about it, she said she would do it.  It was a monday.  By the following Tuesday I hadn’t gotten anything so I then sent a really pointed wtf email and cc the principle (her boss) and the bcba in charge of him.  It worked.  I got one immediately.   The problem with this is I wasn’t in the wrong, but I had to make a big stink thus making his teacher look bad in front of her boss and I hated it.  I still cringe a little when I think about it.  I did what I needed to do for my kid, but I know I made her look bad.

The point of this really long winded blog is this:  Teacher, I do not want to make your job any harder or more annoying than it already is.  I don’t want to piss you off, make you look bad, or waste your time.  I only want my kids to get what was put down on paper.  I want you to see them.  I think you work so hard and do a job I could never handle.  I know you stay late at night, get up early.  I know you take your work home where you miss out on stuff with your own families to finish.  I know you cheer my kid on when he learns something new and burst with pride when he GETS it.  I love you more than you will ever know of all these things and I do not want to make your life harder.  The thing is, when mistakes happen, which they do, I have to be the bad guy and call it out.  I have to be the annoying one to make sure my kid gets exactly what he needs.  I don’t like it but I still have to do it.  Just know when you are annoyed with me for it, I am as well.  It feels wrong, but we each have our jobs to do and I can’t slack on my end either.

It’s not you, it’s us together.  We are both part of his team.  I appreciate you.  I am sorry.  Thank you.

Shut Down

So often we parents of kids on the spectrum experience the melt down.  A melt down is different from a temper tantrum, although to someone on the outside is can look like our kids are just behaving rotten and unmanageable.  Screaming, crying, flailing, hitting themselves in the head or face……it can look really appalling.  Before I had kids I remember seeing kids out of control and thinking to myself my kids will never be allowed to behave that way in public, silently judge the parents and then went about my merry childless shopping with a latte and a pocket full of delusions.  Ha.  Little did I know that these years later I would be gifted these two incredible humans with autism.  Now I get it.  I am sure people look at me the way I used to others, silently judging me and looking at my children like they are obnoxious.

When people on the spectrum have a meltdown it is because their bodies can not handle any more noise, smell, touch ect.  It can be triggered by being in a crowded place, being told no, a build up of pressure throughout the day.  Its hard sometimes to see them coming, but after the dust settles with max I can usually figure out what we could have done differently to head it off.  Every time I learn something.  By watching videos and reading blogs that are by people who have autism I have gained a greater sympathy for how he feels during them too.  I can’t imagine being inundated by all those things that hurt me and make me uncomfortable, I would probably lose it as well.  It can be really sad and frightening to watch him so out of control when usually he is a quiet kid.

I have two boys and they are both autistic.  In some ways are so alike.  They are also very different in the things that they like/dislike.  This may seem so obvious because, well, they are two different people.  The thing is as far as we have come in understanding autism, people still expect it to look the same on everyone.  Every day as we talk more and more about what makes our kids tick there are well-meaning people who try to normalize it for us.  “My kids do that, they aren’t autistic.”  Sigh.  Yes, everyone has quirks.  We could all probably find one thing in common with the person next to us.  That does not mean that your kid has autism, and it doesn’t mean that mine doesn’t.  I understand that maybe you are trying to understand and connect with me as a parent so most of the time I ignore it.  Let me just say this, the last thing a parent of a kid with special needs wants to do is have to prove it to you.  Asking me to explain why my kids have autism is kind of insulting, and I really couldn’t do it.  You could just move in to my house for a few weeks.  That would be more helpful.

Recently my bestie sent me a video and told me to watch it.  Her text said, “This is Jack!! You have to see this.”  I watched it and my eyes filled with tears.  Mixed ones.  Sadness, happiness, awe and relief.  It was a video by a girl named Amethyst Schaber about what and autism shutdown is and how its different from a melt down.  It blew me away.  I didn’t know this was a “thing”.  Jack has been doing this forever and it was so weird to me, I never knew why and what it was.  Not to mention how to handle him and what to do.

A shut down for jack happens when things change.  So if I am home when he goes to take a nap and he wakes up and I am gone, he shuts down.  If he is sick and has a fever, he shuts down.  Right now those seem to be the triggers, change and sickness.  It could stay the same or change in the future, o way to know.  It’s startling because he will go from a happy talkative boy to silent.   He may look at you or sometimes he will not make eye contact.  He did this once when he woke up and there was a birthday party happening.  He was in my arms silent with his head on my shoulder and wouldn’t talk or look at anyone for an hour.  People would come up and try to talk to him and he would whimper and turn his head away.  Or when he has a fever he will lay in the fetal position and not speak for hours, or all day.  It’s so disturbing because when he isn’t having a shut down he is talking non stop, so not knowing what was happening to him really bothered me.  I didn’t know what to do so I would just they my best to make it better.

That is why this video moved me so much.  Finally there was a name for what was happening, and it wasn’t just jack it happened too.  Amethyst goes into detail about how it feels for her, what happens and the things that can make it worse.  I learned that instead of repeatedly asking him if he was ok and getting in his  face I should let him be, just sit in the room.  Talking to someone when they are shut down can cause them physical pain and make the shut down last longer.  Some people may need water, or want to be under a piece of furniture to feel better.  (Jack on christmas morning put himself under a laundry basket and stayed there till he was ready to come out, smart little boy.)  It is different for everyone.  She had another really good suggestion which was when the person isn’t having a meltdown to ask them what would help them.  I asked jack and he answered the best as his three-year old self could.

“Jack, you know when sometimes you can’t talk to mommy and you just want to lay down?”

“yes……”, Looking at me with his full attention, despite his interest in the toy he was using.

“Is there anything that mommy could do for you to make your body feel better?  Do you want me to stay with you or leave you alone?”

“Stay.  Give me a blanket.”

There you go.  Even at three he knew exactly what I was talking about and now I can’t have some peace knowing what he wants from me and how to help him.   Getting in his face is just going to make it worse, but I can certainly cover him with his favorite quilt and sit near him till he is ready.

This is the link to the video.  It is long but really worth the watch to understand you kid, or mine, a little better.

Autism shutdown video

The Tide of Change

I have been quiet for a while.  There has been a lot happening here but I hadn’t the heart to write about it yet, mostly because I didn’t trust myself to actually form any thoughts that made sense. When things get really emotional for me I tend to withdraw from those around me because I want to figure out how I feel about everything before I am willing to talk about it.  There are very few exceptions to this rule, mostly my husband and close friends.  Even they were kind of on the outside this time, and if their feelings were hurt I am sorry.  It’s never intentional, I just can’t handle other people’s thoughts or emotions before I know mine.  There are people who want to talk it out at great length, and with lots of people before then can come to terms with things.  I don’t.  I want to live with it for a while until I figure out where I stand on everything and then I will talk about it.  If I am ready.

I guess that is now.  We had jack’s IEP meeting and it went well.  They said he was incredibly smart academically (not  a shock there) but there were some social deficits they picked up on in their testing, observations and the reports from beacon.  In a meeting that only took an hour his goals were written, it was decided he would attend the summer program and then start 4 day preschool in the fall in a classroom that has aba technicians as part of the support staff.  The dream IEP meeting for a parent like me.  Max’s  hadn’t gone this well until this year, but leading up to Jack’s meeting was a lot less stressful for me.  This time I had official report, goals and a team of people to speak up for jack and it went beautifully.  I really felt like the whole room wanted to help my child, and that’s all we parents want when  we walk in.  It was a relief.

Yesterday was Jacks last day with his ABA therapists.  Just typing that makes me well up with tears.  They changed him so much for the better in a very short time, and became like family.  Not only did they help him, they helped me.  I came to understand more in that short time about jack and max than all the rest of our time on the autism train.  They gave me suggestions and support, listened to my fears, laughed with us and worked their very hardest for my kids.  They saw very intimately what the inside of my house looked like, our family dynamics.  They helped immensely just being there because I didn’t feel alone anymore at home.  I felt like I had back up.  Really well-trained back up.  I felt like even though they weren’t here for max, they at least saw what I was dealing with. Just that acknowledgment alone will be missed.  People often look at my kids with disbelief when I tell them about what autism means in our house, and I can’t really go into much detail in front of my children to explain it to them.  My kids have really big ears.  A snapshot of my children taken at a park, they look normal.  Live in my house and you would get a very different picture at all the hard work we put in with them.  These wonderful people saw it, and helped me cope with it.  I will sorely miss the work they did with Jack, but I will also miss the feeling of awareness they had to what was going on here.  Someone who experienced it with me, and was a gentle support and help.  I feel the loss of it like a cut down to the bone and it hurts.  For my family.  For jack.   For max.  They came in and helped us so much, no amount of time would have been long enough.

ABA has been in the headlines again, as more adults with autism are saying how they felt about it when they were experiencing it.  Most of its negative and it makes me really sad.  Sad for these people because thats what they experienced.  I feel like people find it easy to ignore the opinions of those with special needs, thinking we know better what they need.  Feeling like we need to bend them to our will and make them do what we want them to, no matter the cost to the individual themselves.   My children aren’t severe, mind you, but there are things they have to be taught to function in the world they live in.  Unawares to them, they hurt peoples feelings or do strange things.  They have to be told explicitly not to do things so they learn to fit in.   For example, right now we are working on the proper reaction then someone is hurt.  In the past max would just walk past the hurt person.  He needed to be taught that he has to ask, “Are you ok?”  He learned that but then would ask this question, and keep walking.  Then we had to teach him to ask the question, and wait for a response.  It is something that is so small, but he just doesn’t have the skills to do these things naturally, and if I sent him out into the world like this he would be labeled quickly by others.  He is a very sweet, sensitive and caring individual but he can look like a real asshole sometimes.

I have been in the room for most of Jacks sessions and I can say with surety that they did their best to teach him, and he absorbed it like a sponge. He enjoyed his time with his therapists and will miss them.  I don’t know if he will remember the work he did with them, and if he does I will be curious what he says about  it.  I will listen.  Max works with Rob, someone we found through friends to do ABA with him and I asked him how he felt about it.  His words, “I like playing with him.  He teaches me not to smash things.  He shows me how to play with my friends and what the rules are.”  For our family this has been so positive.  For those who it hasn’t, I am sorry.

We now have a brief two weeks and then they will both be at camp during the week for the month of July. Or the month of Me, as I am calling it. With all the services (22 hours a week in home) he was getting, max’s school schedule, dr appointments, me in physical therapy……..I have devoted myself to the betterment of my family intensely since they stated in december. Now I will be about to take some time and devote it to myself again. Going to the gym, continuing on the weightless journey I started. Taking some quiet time to myself. Cleaning my house alone, without feeling like I am ignoring them. All of these are things to look forward too and will become our new routine.  

While in this new routine, there will be days when I miss them though. Days that jack will miss his special friends.  I hope that we will meet up at parks, that we will see them again.  That’s my hope, anyways.  They will take on new families, new kids.  Life goes on, it moves forwards steadily no matter how much we kick and fight about it.  I only want to say, that as it goes forward, I will NEVER forget the change they helped make in Jack, in Max, and in me.  

xo

The day I let the crazy off the leash, and its result.

If you read the previous blog, you know that our meeting for max’s iep went well. Part of this (in my opinion) is because my son’s teacher who had not been helpful previously was not in attendance. Here is what I get from her facial expressions:

Eye roll: you have unrealistic and grossly outrageous expectations for what a 5.5 year old should be able to do.

Smug-ish smile: I may know your son better than you. Also I think his diagnosis is wrong. I think you found some quack to give you what you wanted.

Sigh. I know this is my shit I have to work through. These are things that I fear people think about me so I have put them on her because of her attitude towards my concerns. I am trying not to be unfair, but its truly how I feel. Nothing triggers me more than when I feel like someone isn’t taking me seriously. I do NOT like to go to these meetings, I do not like feeling like I am on trial and trying to explain what happening at home. If I schedule a meeting with them, it is because I really need to talk to them or I need their help. I understand max is a quiet angel in class, but not so much the rest of his day. If you don’t see it, it can be hard to understand and I accept that. Max is slowly losing his grip now and starting to have some epic melt downs in front of other people. If you and I hang out enough, you will get to see it too. Maybe it’s only a matter of time till he does it at school. The rational parent inside of me hopes it doesn’t because that means he would be acting inappropriately. When he melts there is a lot of screaming, tears, and self injuring (scratching his face, punching his legs or head.) I don’t want that to happen in school because I know how out of control he feels. It comes out of his pores. The mother in me wants to be there to calm him down. There is a part of me that wishes it would though, because then they could see it. Work on it with him. It’s extremely hard to know how to react when it happens without the support of someone who knows what the right way to handle it is. I feel like I am swimming upstream parenting most days.

Part of max having autism is his intense and deep love for things that spin. Especially fans and vacuum cleaners. This is classic. I should have clued in earlier to what was going on based on the hours that he could spend looking at all the parts and seeking spinning things out of our home. I said he had fan eyes. Seasoned veteran of the autism world that I am (BULLSHIT, I feel as though I know nothing), that could have tipped me off. We are at the point now where we tell max that its not appropriate to talk non stop about, and that friends don’t want to play/discuss fan blades of vacuum cleaners. He gets it now for the most part and tries. He really does. Every now and then is sneaks out though. This friday morning I was in the bathroom I heard max in the hallway muttering to himself. After 10 min, I interrupted him and asked what he was doing. He very excitedly explained to me that he was using his camera to take pictures of the vacuum cleaner because he wanted me to print them and give them to his teachers. I laughed knowing in my head that this was weird and the topic changed. Later on I texted jen laughing about it and she said, “why not print them out? Why not let him do that. Maybe it will show them some of what you have been talking about.”

I have to admit, it appealed to me. I felt like it was kind of a dick move on my part, but so was her rolling her eyes when I spoke. When max got off the bus that afternoon and I told him I printed his pictures, he lit up. He was so excited about giving them to her that he perseverated on it all weekend, and it was a three day weekend. A long three day weekend. This morning he checked his back pack three times to make sure they were there and he got on the bus happy to give her a picture of his favorite thing. I let him go, laughing a little in my head about it. I feel like she doesn’t get it, so maybe letting him do what he wanted would let her in a little, open her eyes to it a little.

Fast forward to him getting off the bus. As he was getting off he gave his afternoon bus driver a very blurry photo he took of Jen and her husband. Awkward. I just smiled at her and said go with it, he is excited because he took the pictures and wanted to share them. She laughed, thanked him and took it. As we walked into the house, this is the conversation:

“How was school, did your teacher get you picture?”

“It was ok. I showed the picture to my teacher and told her it was for her and she didn’t want it.”

“What? She didn’t want it?”

“No. She told me she wasn’t interested in fans. The other teacher took one though.”

That was it. I didn’t ask how he felt about it because i was a little stunned that it happened this way. Later on I asked him and he said it made him feel sad that she didn’t want it. I was a little taken back by it all. I knew she wasn’t interested in fans or vacuums. Duh. I figured since he was a preschool kid showing up with something he wanted to give her, she would just take it. Obviously throw it out, probably with the pile of coffee mugs she gets. Looking at him, innocent and all big blue eyes, wouldn’t you just take the damn picture???? My husbands response to this was more colorful but not blog appropriate.

That is the emotional mom response. My rational mind kind of understands a little more. I know that I have said several times to him that I don’t want to talk about fans/vacuum cleaners. That it isn’t an appropriate topic of conversation and not everyone wants to talk about fen/vacuums like you do. I understand that part of it a little. Mostly I wish she would have taken it, said thank you and then told him to go play. Sigh. We are working hard to teach the kid social skills, perhaps this sent the wrong message.

I don’t really know how I feel yet, I am bouncing back and forth between the two. Being the insulted on behalf of my child mom or the understanding of the fact that this may not be normal mom. I don’t know if I am going to just let it go, or if I will write her a note. Because max was so excited, I am sharing his pictures with you. Lucky you, blog community. Feel free to ignore them, or get excited by them. Your call.

Brace Yourself

When you get in a car accident, if you see it coming, your body tenses and waits for the impact. It is a natural reaction, an instinct that is built into your body. It is also not that great because you can get a more serious injury from holding your body so rigid when the impact hits. I only say this because sometimes we can do this with our emotions too. You can be anxious and afraid and brace yourself for the even about to happen. If there wasn’t all that tension the event itself wouldn’t be that awful. Like me when I go to the dentist. I tense up, I sweat buckets and I cry. This is just for a cleaning. I am so scared about the scraping and the metal tools in my mouth that I steel myself the whole time for something that never happens. I don’t die from having my teeth cleaned. I am still here writing this because I survived it. I really just wasted precious time and energy holding myself so rigid because of my anxiety.

This is what happened yesterday with max’s IEP meeting. I wasn’t as stressed about it as last the, I would say more resigned to the upcoming fight we were going to have. I talked it out with
Jen and we had a battle strategy going in. Since in our previous meetings trying to give examples of our struggles outside the class was met with skepticism and faint disbelief, our approach was to just let them talk. See what they had to say, see what they thought would be good goals for the future. In my head I had it that they would say since he met the goal they had for him this was it, game over. No more IEP and no more support. Despite being told a few times that this wasn’t how this stuff goes down, I braced myself for it. I put up my shields. I told myself that I know my child and not to let anything that sounded like criticism wound me too deep. We talked about not trying to explain anything too much like being on trial, not to get upset and maybe not crying this time. I walked into that meeting not as anxious as all the other times I have been to them. Just profoundly tired of the process and exhausted before the fight even started. Braced for it though. I had fully prepared for anything that was thrown at me.

Except for one thing.

I wasn’t prepared for kindness and understanding. I was not prepared for it to go smoothly and for all my suggestions to be taken to heart, turned into goals and genuinely listened to. I wasn’t prepared for them to see some things that needed to be worked on and suggest them, things I hadn’t brought to their attention. It was really humbling. The listened to what I had to say and we all worked on goals for next year. There wasn’t a thing that I asked for that they said no to. He doesn’t 100% qualify for summer school but all it took was for me to say that I thought it would be good for him socially and they added it too. We shared some funny stories about max on the playground.

What I am realizing now is that I have been a little unfair to these women. Don’t get me wrong, there were reasons why I dreaded seeing them. There were some things that were said in our first few interactions that were very cutting and filled me with self doubt. I also think that I villainised them in my heart as people who wouldn’t help me. People who thought I was crazy. They may very well, actually. I haven’t asked them. This whole process is so personal to me because I am sending my heart to school with them every day in the form of my little boy. I felt like they didn’t want to help me because we had formed this grudge against each other. After the meeting yesterday I though about this a lot and I think I may just need to get over myself. I am not that important to them. What they demonstrated yesterday was that max was important to them. They care about seeing him succeed enough to continue to work with him and help him even more than they have been doing previously. As his mom, I couldn’t ask them for more than that.

So really, it’s not about me or my feelings. How is that for a reality check.

Getting My Armor On

Tomorrow is the day of max’s IEP meeting. The thought of going back into that room makes me want to run in the opposite direction. I do not like the chairs, the team in the chairs or anything else about it. That room has become a place that I need to defend myself. A room where the people in it think they know my child better than I do and roll their eyes when I tell them about all the stuff we struggle with outside of school. It’s maddening.

I went to observe max in class after the last meeting and I see why they don’t see him as an issue. The classroom is very orderly, the free time isn’t really free because its all very structured. This is what makes max happy so I can understand why there are no behaviors popping out in class. Everything about how that class is run is soothing to him. I also saw him not answering kids who were talking to him, scripting and using Macy (it was bring your bear to school day) to hit himself in the face with a block. I have mom eyes though, and I was not focusing on all the other kids at the same time. I can understand where he flies under their radar. I can at least admit that.

The issue I have with the people at his school is the attitude towards me when I try to explain whats going on at home or with his peers out in the world. How he gets lost on a playground when all his friends are playing. How he can hit someone in a face with a ball and walk past them not registering that they are crying, like it never even happened. How he will slap/hit/scratch himself at home when he gets frustrated by little things that happen. How other kids will try and talk to him and he doesn’t hear them at all. I could go on and on. I give them examples like I am in a courtroom defending his diagnosis. I feel in my heart, they disagree with it. The max they get in school is the best version. The one we get at home is the one who feels like he can let it all out and sometimes it is startling. I have said to him on more than one occasion that he needs to talk to me like he speaks to his teachers because I know he would never act that way at school.

I am not sure why I let these women in my head. They speak at length about what is age appropriate and typical. Telling us that all kids do things that way. Its because he is a boy. I listen because I can’t act like two year old and cover my ears. I know in my heart that they are wrong but somehow in that room it gets twisted and sounds really smart and it’s not until after that I really put it all together and think, did they really just say that?? My favorite might be when explaining how he is with peers outside of school being told maybe he just really doesn’t like them, maybe he just needs new friends. The friend we were talking about were the same ones he has know since he was a baby, the friend he wants to marry and the one he asks to see all the time. Or when I said how he struggles with pretend play with play sets like play mobile, they tell me that really advanced for his age and that’s not age appropriate. Then my friends two year old is playing with two things and making them talk to each other, having a conversation. My 2 year olds aba people are working on those skills with him now. So I know that maybe they are the crazy ones, and yet I always leave that room feeling like they know my child better than I do.

I think thats the root of the problem for me. I am not arguing with what they see, because I can see why they feel that way. I watched him in his class I saw everything I was talking about, but it was quiet and subtle. The reaction when I say what we see at home is just disbelief tinged with skepticism. It’s awful, but sometimes I wish he was a little more special so maybe they wouldn’t feel the need to give me crazy eyes when I tell them my concerns.

Each time I go into one of these meetings I tell myself not to get emotional but it is hard. I think I have cried in 2/3 of them just out of sheer frustration. I always go in there with a stomach ache and leave with a headache. I feel like I am being judged and found lacking in understanding my own child. I am going to really try hard this time to coat my feelings in a little armor and not let them in. This meeting isn’t about me and my feelings, it is about max and how he is functioning in school. Its about asking them to do their best to make him successful in school and home………and also maybe not roll their eyes.

Ben Speaks Louder Than Words, and also to me.

You know how sometimes life puts you in the right place at the right time? So you can meet a person you need to meet, learn a lesson you need. Or maybe so you can impact someone else’s life in a way they need. I am a firm believer in this and its how I live my life. The friends I have now, the situation I am in……everything I have experienced has led me to this point now. I am not done though, this will continue till I am done living. We all touch each others lives like drops in a pond, rippling out until we touch another drop.

If we haven’t met in person, I don’t exactly look like a “FIt” person. I swiftly started to gain weight when I was 16 and depression set in with a lot of health problems and I ate to feel better. I went to school for cooking, so I made amazing food and then ate that too. I became an adult and could afford to buy whatever I wanted and I ate it. I never thought about my body, what I was doing to it. I just like food, I ate it and I got fat. Simple. I didn’t work out at all, I had two kids and I got bigger. I bought bigger clothes and then couldn’t shop in the stores everyone else did, and then worked harder and harder to cover up what I saw in pictures of me so that I would like what I saw. I didn’t, but I kept my head down and tried to ignore it. Until about a year and a half ago. My husband and I were driving down our street and I saw someone running out my wind and I said out loud how jealous I was of him. My husband looked and me and said,”So start running.” I thought about it and my serious answer was I think I may have a heart attack if I did, and I meant it. Carry all my fat around was hard work but to run with it? My body might just wave the white flag and just stop working.

I joined a gym and started working out religiously. I changed how I ate and kept track of every bit of food that went in my mouth and it amazed me. No one had ever told me that it was simple math. I lost a lot of weight quickly and have kept it off, even thought I am now back in physical therapy for a foot injury that won’t quit. I am thinner but not skinny and I still have a ways to go, but this is how I ended up meeting Ben’s mom Judy.

This past weekend I was part of Yoga Reaches Out 2015 at Gillette stadium. It was me and about 999 other people doing yoga. I had to do it because when my yoga teacher was talking about it my initial reaction was,”I can’t do that!!!”.

The the other voice in my head that has gotten me to where I am today said, “Fuck. Now I have to do it.”

I badgered my friends and family and raised enough money to go, and then some. I knew we were raising money for Boston Children’s Hospital and their pediatric brain cancer unit, and also for Ben Speaks Louder Than Words, which is about helping teen battle depression and suicide. Beyond that this event was about proving to myself I could do it, having a day meeting people and a day away from my kids. When I got there someone told me to go get my team shirt from Judy, a cute tank top with the Ben Speaks logo. SHe was very sweet but it was very busy in there, so I didn’t see her for long. There were a few groups of kids that sang at the event with the same shirts and the guy on the mat behind me was a good friend of Ben’s. That was the extent of my knowledge to that point about Ben.

Later on Judy, who turned out to Ben’s mom got up and spoke about her son and from the second she opened her mouth my eyes were flooded with tears. She talked about Ben, a local boy, who had battled depression and mental illness form early on in life and ended up committing suicide as a teen. That alone brought up painful memories of my husband cousin who took his life shortly after we were married. It’s a loss that is still felt deeply every day in our family, so I could sympathize with her. She then went on to describe what a “Ben” is so that we could be more aware. Its struck a chord in me that I felt in my heart. The hair stood up on the back of my neck because she was describing my boys. Kids that feel misunderstood, are anxious, suffer from a mental illness, usually incredibly smart and artistic and intuitive. While my kids don’t have all of the qualities she described, that had enough of them that it really resonated of an uncomfortable level. It was such an emotional day spent bending like a pretzel and sweating, but this one woman and her story stuck in my head. She asked people in the audience if hey were a Ben but made it through to stand and a few brave souls stood up. She asked if you were raising a Ben to stand up and more of the crowd (myself included) was on their feet. She then asked if you know a Ben to stand. By the end almost everyone was on their feet.

See, I have little kids right now. I sometimes toy around with the idea of them as teenagers, but I tend to be the kind of person that lives in the now and not in the future. I hadn’t given much thought to what autism could mean for them as middle schooler of high schoolers because I want to to keep them in the little kid stage as long as possible. As it is right now, max has no concept of people being mean and nasty to him for no reason, he still thinks that everyone is nice to each other. We haven’t moved past it yet. It’s looming out there yet and I can see my anxious little boy being affected by it and it scares me. I don’t want him to be a Ben. I don’t want him to turn silent and inward. Unreachable. The pain that Ben was in was so great he took his own life, I don’t want that to happen to my babies. I can’t control their whole world though, I have to let them grow and have experiences but the mom in me wants to keep them close forever.

I was processing this with a friend of mine and she said when her son was diagnosed that was one of the first things that the Dr. mentioned as a concern for when he grows up. Apparently kids with autism have a very high suicide rate, don’t google it btw. I did and once I saw the alarming amount of things written about it I had to walk away from my computer. It’s hard enough as a teenager but add to that some mental illness or a developmental problem, and it gets just that much harder. So what do you do?

I am now informed, I can’t un-know this. Now that I know, I can be more aware and talk to them. I can make sure they have professionals to talk to. I can work with their schools and keep a careful eye on any situations that arise. I can talk to them and make sure they know they can share anything with us, that we are a safe place for them. I can raise money for organizations like Ben Speaks to help other kids that are struggling. I cam hug them over and over and over.

As uncomfortable as this topic may be, I needed to write about it today. I don’t know if anyone will read it. If they do, then great. If you know a Ben, or are a Ben, or are raising a Ben please reach out to the people around you. Ask for help or direction. Tell me and I will listen.

Thank you Judy for being there that day, I know I needed to hear your story and will be a better mom because of it. I wish I had gotten a chance to see you before the end of the day so I could have told you that, but if this reaches you somehow please know I am so glad I heard your story.

The A Card

The A card.  All of us parents with kids that have disabilities have one.  If max is having an off day or is acting bizarre all I have to say to a stranger is he has autism and they get all big eyed and uncomfortable.  It stops the conversation and they look away or they engage me in one of two conversations.  The first is the favorite of every parent of a kid on the spectrum.

“He doesn’t look like he has autism, you would never know!”  (Because wtf does that look like to you???)

Or it starts a conversation about a family member or friend of theirs that has autism too, and the large community I am part of, and those I never mind.  We all struggle and compare notes.  We know about all the fears, tears, frustration and love that it brings.

I read a blog post recently by this guy I follow on Facebook, InkforAutism.  He was talking about that moment that all of us parents have when our autistic kid is losing his shit in public and an obnoxious person has to comment  on it.  Something like “get your kid under control”, “He need more discipline” or my personal favorite just staring and rolling their eyes and muttering under their breath about your clearly lacking parenting skills.  This man was so angry with the person criticizing his child and his wife calm explained he had autism and to please give their family some space.  The man yelled after her “so Fuck off!”,  and it made me smile a little.  Good for him for standing up for him and telling her off.  My husband and I talked about what our reactions might be.  I really dislike confrontation and tend to just let it roll off my back and then share my feelings with the people close to me after.  I couldn’t imagine myself yelling at a stranger, but then no one has ever pushed me to that point before.  We sat wondering what our reaction would be.  My opportunity came the very next day, and to this moment still fills me with rage.

It was Christmas eve and I took max (5) to the dollar store to pick out his presents for daddy.  This is a tradition that swiftly became a family favorite because bringing a child to the dollar store to pick out five presents for their parent is hilarious.  The things they pick out come straight from the mind of the child, the only rule is that he picks five. This year Craig received a small saw, some duct tape, a pack of trading card with pop stars on it, a mallet and one of those grabbers that senior citizens use.  Max was so well-behaved on this shopping trip, I was so proud.  He stayed with me, listened to my words and was very calm the whole time.  He was holding the grabber in line and opening and closing it but wasn’t waving it around.  The store was busy, two lanes were open and the woman behind me with a two-year old was complimenting me on how nicely max was behaving (her 2-year-old was screaming and running around the registers).  All of a sudden I pick up on this woman in the line next to us commenting on max using the grabber.  She was older, blond and wearing a lot of eye make up and I will never forget her face.  Loudly she kept saying, “I can’t believe she is letting him use that, look at him.  He better not hit someone with it.  If he hits me there will be a problem.  How irresponsible.  Ugh.”  This was will lots of huffing, eye rolling and nastiness.  I was floored.

There are lots of times when we are out that I could scream at my kids for being out of control but this was not one of those days. Max was at his best.  Being respectful and happily standing next to me.  I turned around and said to her, “It is Christmas Eve, he is five, leave him alone.  He isn’t hurting you or anyone else so stop talking.”

Her reply was, “Well, i am a kindergarten teacher and I would never let my kids walk around with that.  It’s disgraceful.”

I was incensed.  The people in line behind me tried to reassure me.  They all started speaking up for max and saying how good he was.  The woman with the two-year old said if she wanted to complain about someone acting out of control to talk about her child because max was behaving.  The cashier looked at me with sympathy as my hands shook with anger and said, “It’s ok, she isn’t going to stop, just don’t listen to her.”  The woman kept going.  Finally I turned around and said,

“Enough!  He doesn’t belong to you.  Stop talking, you are ALL DONE.”

She didn’t stop but brought it down to a mutter.  We paid and left.  Walking out I sensed someone behind me and held the door open for them, it was her.  She didn’t say thank you, just walked away.  I called my best friend and ranted.  I ranted to my husband.  I thought of all the things I wish I had said to her.

So there you go.  That was my reaction.  No more wondering.  I spoke up, reprimanded and yelled at a complete stranger.  The best part about it was that I defended max without saying anything about autism. He was acting and looked like a typical child, he was listening, behaving well and it didn’t apply.  Sure i could have said it maybe to make the woman feel like more of an asshole in front of the whole store but then max would have heard me.  In retrospect afar this whole incident I am glad it never crossed my mind.  Max got to see his mom defending him, not using his disability as an attack back out of anger.  The A card didn’t apply at all, it was irrelevant.

Also, I hope she doesn’t teach kindergarten in Bellingham.