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.

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

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.

New Scientific Study Links Autism to the Consumption of Strawberries

Big news for our community. Most moms try and eat healthy while pregnant, but that may be damaging. Recently its been found that strawberries, while innocent looking in nature, are actually being linked to autism. Also, in kids that already have a diagnosis that are consuming them it can actually make the symptoms worse. The cause for it is not the berry itself, but the seeds. Kids on the spectrum that have seedless strawberries were shown to have an improvement in social skills and to be calmer. SO it seems that the seeds are to blame for autism.

I am sure you are all thinking I have lost my damn mind. You are right. I made everything up in the above paragraph. There is no study about strawberries that links autism to strawberries, that I know of at least. I am sure you could google one and find it though.

I am writing this because I get so frustrated by all the bullshit that gets floated around as the “cause” for autism. I understand that for most parents this diagnosis comes with a blow, felt directly in the heart and stomach. We all wonder why, what happened in the joining of dna and growth that autism developed. Did it happen immediately? Did it happen when I was pregnant? Was it something i did? Did it happen at month 3? Or when we chose to vaccinate? (BULLSHIT also, don’t get me started on those crazies) Or maybe it was the deodorant I used. Or maybe the town I live in is near a power plant.

Really, we could go on and on and on looking for a cause. The part about this that frustrates me so greatly is that for every person that has a theory, there is a computer waiting to spread that theory and infect the paranoid parent in us all. Just because someone writes it doesn’t make it true but there are always people out there that will grab onto it and run holding it close. I understand the urge people have to search for this reason. Deep down we all want someone to tell us that it isn’t our fault. That there was nothing we could have done differently anywhere along the line, autism just happens. If there is a cause then there would be a reason. If here is a reason then it is no ones fault. THere are a lot of parents who search and search for the cause because if there isn’t a cause then maybe we have to face the fact that there isn’t anything to blame. If there is no one to blame then maybe there is no one to be angry at.

I feel like autism in my family means so many things. I have to work really hard on my kids. There is never a moment of relaxation, I have to always be on my toes, correcting their behavior or what they say. Trying to predict what they will do next or how they will react to certain situation. We saw max’s Dr. at the lurie Center recently and she asked me a question that floored me. She asked “With all that they have going on, do you ever get a chance to just enjoy being a mom?” My answer was a swift no, with tears pricking my eyes because i hadn’t really thought about it. No one had ever asked me that. I spend all my time managing because the second I stop thats when the break down happens. All the hard work that the magical ABA fairies have done, and the hard work that I have put in can easily slide backwards and be forgotten if not maintained. So I can see why people want an answer or a cause. SOmething to blame in those moments when I want to rip my hair out or start screaming at them for just being them.

Here is my gift to you all. As it stands right now, all of the stuff you read on line is a theory. Even the best hospitals in the world have not solved this mystery yet, they are working theories and research. For now. Maybe someday in the future we will know the reason there are so many now, and maybe its something that could be prevented. Or maybe it isn’t. I just urge you all to not spread the crazy. Somewhere out there reading your crazy is a mom who is tired and wants to cry. She may see your crazy and believe it, and then start telling other people who may mistake your theory as an actual fact. THose people will form an organization against strawberries with seeds and then some scientist will have to work on genetically engineering strawberries without seeds which I am sure will have an effect on our fragile eco system somehow.

Maybe this is dramatic? I don’t know. WHat I do know is I am not looking for a cause. Instead I enroll my kids in any research study I can find in our area to help science understand my kids better. I also lovingly feed them strawberries and any other kind of fruit they like.

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.

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