Why We Don't Say "Special"

I think if I could focus on one thing within the world that is the "Autism Spectrum", if I could look into part of it as a neutral party rather than as a parent of an autistic child, I would want to study the siblings who do not fall within the spectrum.

That has been one of the harder things to juggle - talking to a five-year-old about his brother. Like every part of this journey, that has been a learning process. We've done things wrong, we've done things right, we try things and see how it goes. We probably fail more than we succeed. We are still learning and trying and will be throughout. I don't remember what the world was like as a five-year-old. Not in what would help, anyway. I don't remember my perceptions and thought-processes or how I saw the world around me. 

From the very beginning, we have been very careful to not use the word "special" to describe Eli around and to his brother. Logan - for the most part - does an incredible job with his little brother. His little brother who does things that Logan can't get away with. His little brother who will tackle him and sometimes hit or take things from him. His little brother who battles and screams and kicks if he wants to watch a movie that Logan doesn't.

In no way did I ever want to have Logan - a five-year-old - trying to understand why Eli gets to be "special" when what his five-year-old eyes see isn't always good, and what his five-year-old heart feels isn't always love.

I just couldn't see how that would not be horribly confusing. 

And in the real world, when Eli is an adult, no one is going to make excuses for him because "he's special". I don't want him to expect people to make excuses for him anyway. I want him to own his behavior, and learn to manage it, and help him along the way. 

Eli is incredibly special to me. Logan is incredibly special to me. 

And so we say "different". Eli's mind works "differently". Eli initiates play "differently".  Eli communicates needs "differently". It isn't always nice, sometimes it's really hard, but he is going to learn, and we are going to teach him.

We say "different". We teach "different". We use it when Logan talks about how his friend at school finished his worksheet faster, or when someone else says they don't like "skylanders" as much as he does. People are different in every way. 

That is a beautiful and incredible thing. 

We are all different. How Eli's brain works is different than how Logan's works. How Eli's hands feel is different from how Logan's hands feel. And that's okay. 

Saying that Eli pulls Logan to his face when he wants to play with him because he's "special" doesn't make sense to me. Eli pulls Logan's face to his own when he wants his attention because he hasn't learned patience and correct social contact and initiation like Logan has. Eli's brain doesn't work the same. It isn't any more special. It's just different. 

And different is okay. 

Down the line, maybe we'll change that. Down the line, maybe we'll see we are wrong. But for now, while I try like hell to see things through Eli's eyes, I will make every effort to see things through his brother's, too. They are both incredibly special. They are both incredibly different. And for that, I am forever thankful.

Fight

Oh, Sweet Child of Mine, 

Sometimes I wish I could see into your mind.

More than sometimes. 

I wish I could more times than not, really.

I wonder if you are just as frustrated with me when I do not know what you need as I try my hardest to not be.

I want to meet your needs - whatever they are. And, you know ... well, really you probably don't know ... that sometimes I do understand what you think your "need" is but I know what I must do for your greater need. For your greater victory.

Little one, everything we do is to bring you victories. 

When you are kicking and screaming and hitting and banging because you want that train that another kiddo has, I know that you think taking the train from that child and giving it to you is the right thing for your mommy to do. I know that that is how you see the world sometimes (as much as any little giant's mother can know anything). But, Little Giant, sometimes wrapping my arms around you and putting my legs crossed over yours until you don't have any fight left (so that you don't hurt yourself or someone else) breaks my heart. I know that in the bigger picture you need to know how the rest of the world works. I love you. And I will fight for you, even when that means I have to fight with you. Every time we are battling a melt down, it's exactly that - we are battling it. You are not alone in it, no matter how alone you feel.

I'm going to be with you through it - every step of it, every kick of it, every wail of it. I'm going to stick it out and be strong and give all I have until when I ask "Where are Mommy's eyes?" for the forty-eighth time you finally look into them and say, "Right there." 

That's when I know I have you back. That's when I know your world and my world are the same again. That's when I will squeeze you and talk you through and we will move forward. 

I will give every ounce of strength I have to bring you through this, kiddo. Every ounce. When I don't think there is any left, I'm going to hold you tight and pray for Grace because one day you are going to be even stronger and bigger and tougher.

Your little body is already so strong. 

I love you. With my whole self, I love you. I am fighting for you. I am fighting with you.

For my whole life. For however long this takes. You've got me. I'm not giving up. 

I'm not going anywhere.

Even when it feels like I'm not, I will meet your needs - your real needs. I will cheer for you. I will push for you. I will defend you but I will always, always look for the bigger picture and fight for every victory along the way.

I love you, Little Giant.

- Your Mom

Never Again

A few days ago I bit the bullet and signed-up for something that I have been terrified to do.

After much discussion with his main therapists and multiple discussions inside my own head, I signed Eli up for a group class - gymnastics. 

Since Eli was a baby his strength has been unmatched. His knack for balance is almost strange to see (and sometimes can be worrying). He can hold himself for several minutes just with his arm strength. This kid has serious skills and I know that if we put him into an atmosphere where he can focus them his world may be a better place.

It isn't in the cards for us for private lessons and, even if it was, I don't want our son to always do things alone. I want him to be around other kiddos. I don't want to hold him back. I don't want to keep him "away".

My neighbor and I tried a play-date the other day. Her precious little giant is on the spectrum and non-verbal. His challenges aren't the same as Eli's - they truly are greater in my eyes - and we wanted to have them together. Throughout the pool-play she was having to re-focus him and reinforce and engage/disengage just as I was having to do with my littlest little. Our conversation was continually interrupted by one of us having to intervene somewhere - about every ten words or so. At one point when she returned to the conversation she apologized for her son. I touched her arm, looked in her eyes, and said, "You never have to apologize to me for T. Ever."

I saw the tears well up in her eyes when she thanked me and said, "I'm so tired of saying 'I'm sorry'. I don't want to apologize. I shouldn't have to."

I understood every single one of those statements. I understood the emotions behind them - the sheer exhaustion of saying you're sorry again and again and again. When your child randomly starts screaming, or hitting, or throwing his head back. When they don't comply with a direction. When they jump in front of another kiddo in line. When they seem to ignore anyone and everyone.

I know how deeply the apologies hurt. I know how they wear down your soul. 

I just said, "No more apologies," as we both wiped away a tear or two. She repeated the same.

"No more apologies."

I made a promise to myself that I would follow that. That I wouldn't hold my little giant back from the rest of the world because I was so tired of saying, "I'm sorry." That I would go in with a strengthened spirit, with the resolve that he deserves every activity and joy and skill allotted to any other child. That  I had to accept my son if I was going to demand for anyone else to.

So I took a breath, said a prayer, and signed Eli up for group gymnastics.

It was a hard class. The first ten minutes he covered his ears and entered his own world. He wouldn't listen. He wouldn't participate. Any response to my promptings was a scream. I told the two instructors just before class started but none of the other six adults (parents) in that room knew. When Eli finally decided to "participate" it was on his terms and a struggle to get him to wait in line and follow directions and just be in a large gym with too much activity and too many people. I saw the stares that people tried to pretend they weren't giving. I saw a couple shaking heads and I even noticed when other parents pulled their children away from my own. I noticed it all. I saw it all. And for the first time, I didn't apologize. Not once.

I didn't remove my littlest little from the challenge. I didn't give up half way through. We fought through together. We celebrated when he did comply, when he did stand in line, when he did follow an activity. My little giant and I cheered for the triumph of today. I cheered for him when he made it through forty minutes of what could have been hell-on-earth for him. With the stares and the shaking heads and the big hands pulling little hands away from my son, I stayed proud of him. I stayed focused.

Every single time I wanted to walk out of that gym I reminded myself "no apologies". No more apologies.

My child deserves my acceptance and my determination and my best self. He doesn't deserve excuses and apologies and a shameful, head-bowed mom. 

He made it through forty-minutes of over-stimulation and fear and chaos in his world. He made it through it! He didn't give up.

Today was very hard. Next week may be better - it may be worse - but we aren't giving up. Never again will I keep him from something because I am scared of what comes with it. Because I don't think I'm strong enough to handle it. Because I don't know how I will get through it.

Never, ever again.

An Open Letter to My Son's Teacher

Dear Teacher,

I received your email apologizing "if you hurt my feelings" and saying you "thought we got off on the wrong foot."

Well, I'd say we did.

I emailed you back. It took me several hours because I needed to calm down and breathe and figure out how to politely tell you that emailing me to apologize "if you hurt my feelings" was degrading and back-handed.

You haven't responded to that email yet. I sent it last Friday.

I'm sure you're busy.

I spoke to the principal. When I spoke to her on Friday she couldn't believe the quote I gave her was actually said. You know, that thing you said about "the gifted children always being above and ... you know ... 'the special need' always being below because that's 'just how it is'."

On Monday, your boss told me that you fully owned that statement but that what I got wrong was that you weren't just talking to another parent when you said that, but that you were talking to a fellow teacher at this school whose daughter is in your classroom. I'm not sure how that was supposed to help with the situation except maybe now I know who I don't want to teach my son when he is in fourth grade. She told me that it was a "conversation between colleagues" that was "never meant to be heard by a parent" and that it was "unfortunate that I heard it."

I'm not really sure how we went from Friday to Monday with that change.

I don't think it's unfortunate that I heard it - the conversation that took place with a wide-open door that lasted into my son's parent/teacher conference time. The scheduled time where you knew you were going to be meeting with the mother of one of ... you know ... "the special needs". Maybe you assumed I would be late because I also overheard how you talked about "those kids" who don't know all of their letters when they enter your class. I heard the tone and the sighs and the little digs you made towards the parents of those kids because, surely, we must not care about their education or well-being. I'm sure you just assumed I'd be late since my child has trouble remembering that an uppercase "I" and a lowercase "l" look the same. That's a reasonable thought.

Sure.

I really appreciated how you spoke slowly and used small words when you talked to me about my son. It would have been difficult for me to understand his kindergarten curriculum if you hadn't. I also really appreciated how you hadn't read his IEP until just before our meeting -  two weeks into school. I know how inconvenient that piece of paper must be for you. How much time it must take from your life to read how his brain works and the simple two or three steps it asks you to take with him each day. And his IEP isn't nearly as involved as my three-year-olds. Remember? I asked how you would handle my little giant if he was in your classroom - the one on the spectrum who is highly-intelligent. Wouldn't shock me if he tested gifted once they finally can test him. You told me he wouldn't be able to learn with the "gifted" children or even the average kiddos because in kindergarten "the special needs" aren't ready for that integration. I have a really awesome book on Special Education Law. Please, let me know if you would like to borrow it.

I think the only "unfortunate" part of any of this is that you - an educator and these kids very first step in their educational journey - that you see no issue with discussing that "the special needs" will "always be lower". THAT is what is unfortunate. That is what is unacceptable.

This has nothing to do with children learning differently. It has nothing to do with meeting the needs of each individual child. In no way am I asking you to teach my son the same way you teach the little girl that sparked this entire thing - the one who reads on the third-grade-level - contrary to what it seems you suggested to the principal.

I am asking you to never refer to my son as "always below" ever again. I am asking you to in no way ever say a word or make a face or have an open-door conversation that writes him off before he even gets started.  I am asking you to follow the oath you make as an educator. I am asking you to see my child as able and worthy and deserving rather than an inconvenience or extra work or a nuisance.

My son loves to learn. I know it's going to be a little harder to teach him. I know that IEP asks you to do a little more with him. I know that being excited that, after working with him for an hour last night, when he finally got down how to write his name as "Logan" rather than "LOGAN" isn't nearly as fun for you to brag about as having a student who reads on the third-grade-level. But for my son that was a victory and was celebrated in our home.

Don't you dare lump him into some made up category of "always lower". He's five-years-old. He's eager to learn. Don't you dare take his joy. Don't you dare squander his sense of wonder. Don't you dare make him think he'll never be good enough to be more.

- His Biggest Fan, His Mom

The "R" Word

This has been a hard week.

We struggled with whether or not to take Eli out of the school system and strictly do ABA therapy at his clinic. We love his clinic. If you could see where he was four months ago and to see him now ... you wouldn't think it was the same child. His progress has been incredible.

Unbelievable, really.

Well, two weeks ago you would say that.

I have read about regression and taking ten steps forward, four steps back. I knew it existed. I knew that it was an incredibly emotional part of this roller coaster. I knew that transition was a time that parents of kiddos on the spectrum hold their breath and watch.

I knew that.

I just ... I didn't think we ... I didn't think we would see it right now.

Eli is on an extremely exhausting and rigorous schedule that we are probably going to need to change. Monday through Thursday he is in the school system. We chose to keep him in this program because he was moved to a different teacher in a different setting. She communicates daily with us and really understands how important structure and boundaries are with kiddos like Eli. She holds firm with him and he hates it. He went from a classroom with no structure, no boundaries, to a place where he has to "earn the train table" and "earn the tracks" and share the trains. This is where he will (hopefully) go to kindergarten. One of Eli's greatest struggles is acceptable social behavior. He doesn't know how to communicate and interact and "play" in a socially acceptable manner. He hits, he doesn't stop moving, he needs what he needs right now. Having him in this setting is important for him because for him to be allowed in a regular kindergarten classroom he just has to know how to sit still, and play, and wait, and just be around two dozen kids.

It's an extremely important goal for our kiddo. It is our number one focus in therapy and daily life. He can look at alphabet flash cards and identify those letters (sometimes faster than his brother), he can do the same with numbers up to twenty-five but he can't let another child touch a train...

I want so much for him and he's come so far.

We love his clinic - the hour-away clinic that he still goes to three-days-a-week - but they can't offer him that same social environment. They work on it but they can't mimic the preschool setting. They work on food-intervention and potty-training and proper behavior and labeling and expanded speech.  They are the people that made it possible for my son to look at me and say, "Mommy, I'm sad," during a time that he really was sad. I cannot explain how invaluable that is to this kiddo!! They are a key-part of this journey.

On Wednesdays he goes to speech and occupational therapy. It took three tries before we found his incredible OT. She understands his sensory issues spot on. His speech therapist has been with us since the beginning of this journey.

Every single one of these aspects challenges him, and he is in a place where he hates it. He has to work ... hard. He has to do things that he doesn't want to do and doesn't understand why he has to do them. His defiance wears him out. His anger shuts him down.

He's so tired and frustrated. He's moving backwards.

And I know this is part of it - a HUGE part of it. I know that regression is almost guaranteed with transition. I know it.

I know it. But, God, it's so hard to see it! It's so heartbreaking and soul-crushing to watch your child struggle and move backwards. I want to squeeze him and help him and push him through it.

But I'm still learning so much. It's hard to swallow the reality of the cycle - that there is a cycle - and that it's going to take a lifetime to break it.

Trial and error. Sorrow and joy. Heartbreak and Hope.

One day at a time. Step by Step.

Until we're back on the "moving forward" part again.

I love you, Little Giant. It's going to be okay.

We Need Better Mothers

I first saw "the letter" yesterday.

I have to say I was so angry that I had to move myself away from the computer and just sit and hold my littlest little.

It's been circulating around social media and you've probably seen it. Social media really is incredible that way - a blessing and a curse. This is the message that has been all over. Take a deep breath. You're going to need it.

I'm not going to talk about the "mother" who wrote it. I'm not wasting my words or energy on her - not for a moment.

But I am going to talk about the mother she addressed in the letter. It isn't me. While Eli has melt downs and times when I can't understand what he is saying and he is a challenge and difficult and loud and "different", he will never be this precious child.

I met the mother this letter is addressed to today - one of tens of thousands that it could have been written to. I met the "lady living at this address." While waiting for Eli to finish his therapy, she said hello. We sat and talked while we waiting for our sons.

I met this mother.

The mother of a sixteen-year-old boy with autism. A young man who will never be able to live beyond her care - beyond her comfort. A young man who will never go to college - like his sister did for the first time today. He most likely will never "normally" communicate or understand boundaries or social etiquette or an "inside voice".

I listened as she shared the little bit about her son with me. I listened while I sat beside my five-year-old. I listened while I waited for my littlest little who I knew has a real shot at every single one of those things. I listened and I looked into her eyes.

She was so tired. She smiled nearly the entire conversation but I could see it.
Her eyes were so tired.

I knew how much she loves him. I could see it just as much as I could see the hurt.

We hurt for our children. We hurt for the things we hear that they don't. We ache for the hatred we witness that we pray in the deepest corners of our soul that they never experience.

She sat there knowing what future could be held for her son. Her son who is just as human, just as much a child of God, just as much worthy of joy and hope and peace - however he finds it.
This mother deserves a world that teaches its children understanding and generosity and open-mindedness and patience. This mother deserves a people who strive to become educated on the world around them. She deserves compassion. She deserves fellow mothers who teach their children that the hand dealt to them has nothing, nothing to do with how they treat others. That how "normal" they are does not give them a right to berate and tear down those who were dealt a different hand. That nothing given to us naturally makes us better than anyone else. That how their brain works doesn't mean how someone else's works warrants for them to be condemned or locked up or ...  I can't even type the other thing written above.

This mother deserves better mothers.

This child deserves a better world.

I hope with all that I am that the world is kinder to my child. I pray with every ounce of hope that there are children with better mothers who have taught them how to love - how to truly love their fellow man.

We need better mothers.

Messages

Maybe one of the hardest things for us to do as people is to admit wrongs that we have done - wrongs that no one else would ever know. Our thoughts are ours. No one can hear them, know them, judge them unless we allow them to. 

Unless we "put them out there" for the world to "see". 

I didn't know why he mumbled when he spoke. It took three times of asking him "I'm sorry?" to understand that he was complimenting my dress. He didn't quite look at me when he spoke. Something about him made me feel "off" and I said a quick "thank you" and broke contact. 

He opened the door when we left a bit later. He mumbled something but I didn't hear it. I just kept walking and said another quick "thank you" while we moved past. 

When we came back the next day, I (shamefully) attempted to avoid him. Sitting Logan and I further down the waiting area, not looking his way. He was nice. Kind, even. But for whatever reason, I just couldn't shake how "strange" I felt around him. 

Again, we left when lessons were over, and again he held the door open for us and I said a quick and polite "thank you." 

The next day I paid attention. 

I noticed how he continually wrung his hands together again and again and again. How he shuffled his feet from one to the other, back and forth, back and forth. How he had to make an effort to make eye-contact when he spoke to people. About how he really had to make an effort to speak loud enough for people to hear him. I noticed that when he did speak, he did all of those things at the same time. 

I noticed him for the first time and I realized every gesture that I questioned or tried to ignore or considered "off" was a coping mechanism, what he needed to do to be able to speak to strangers surrounding him. 

I realized that every single gesture of kindness and inclusion and socializing was a struggle and triumph for him. That every word uttered that was accompanied by eye-contact was a BIG deal. I realized that I had judged this man - a man so much like my child. 

A man who was trying his best.

How humbling.

I spent most of the lesson talking to him. I noticed how he tried to slow his speech when he became focused on a topic. I noticed how he made every effort to look me in the eye and how it only lasted for a split second when he did. I noticed how hard he must be working every second of every day to do the simplest things that I take for granted. 

I noticed how quick I was to judge. I felt ashamed and saddened. I knew that what I had "thought" of him is what I fear any stranger will think of my son. 

That's he's "off," that he makes them uncomfortable. That "something isn't right".

When we left I asked his name and shook his hand. I told him I looked forward to seeing him again.

Tomorrow I will sit near him and ask him how his day has been. And I will listen when he gets lost in whatever topic he fixates on. I will try to make up for the ugliness that only I could have known in my mind. I will see him as another little giant battling to demand a place in the world around him. I will think of whoever his mother is - because I know she fought for him. I know she must love him intensely to get him to this point. I know that she must be so proud that he opens doors for strangers, and speaks to them, and tries like hell to look them in the eye. I know that she would cry if she could have heard my thoughts. They would break her heart the same way they break mine. 

I know this woman must be one strong woman. I know his parents must have given every part of who they are to make him who he is. 

I know that him being at the gym, greeting people, opening doors, takes everything out of him. I know someone will one day think my son is "off" and I know I will remember this lesson. This humbling lesson.  

Everyone is someone's child . Every "little giant" is fighting to find their place in this world. And it is hard and painful and then so incredible to see progress and triumph. 

I am learning so much with this diagnosis. We are growing so much with this journey. It is humbling and eye-opening and knee-bending. 

I got the message. Loud and clear.

A Failing System

Last week was my very first time observing Eli in the clinic. It was so awesome to see. 

He was so excited to have me there and I loved watching him move from one place to another, loved hearing him speak, loved sharing in his excitement. 

I watched intently while his therapist assigned to him that day handled a meltdown. I sat quietly and took in everything she did and then when it was done, she looked at me and asked, "Do you want me to explain that?" 

Yes! 

So she explained using "hand-over-hand" motions to "help" him complete a task that he doesn't want to do. How you count 30 seconds in your head and stay focused on continuing the task for that amount of time. She explained how certain words signal to him that the task is over. 

I have been able to see him properly show emotion - and by that I mean how to verbalize "I'm sad" rather than running into a wall. 

And that isn't a joke. It's unbelievable to see how much he is improving. 

I am so grateful for it.

-------------------------------------------

So many parents fought their way to Washington to get proper care for kids like my little giant. Therapists and doctors and psychologists all argued about how much there must be adequate coverage for these military kiddos with drastically higher rates of being on the spectrum. 

They fought for my son before he was even born. They fought for me before I was even a mother - before I was even a wife. 

The months spent fighting through the red tape associated with military healthcare were worth having Eli in this program. Without question. 

And all of that may be for naught. 

Tricare has rewritten its policy on little giants like mine. They have taken more steps backwards than I can process ... and they aren't telling families about it yet. If you happened to be "linked in" to advocacy groups, or check written policy every other day, you might have caught the changes. Providers don't even all know. Tricare employees haven't been given their ways to speak about it yet. 

Here is what I have been able to decipher so far...

They want to limit my son's therapy to two years. 

Two. 

Total.

After that, he's on his own. We're on our own. So when he is entering kindergarten - the biggest educational transition of his life up until that point - he may no longer be eligible for the very services that will help him to make that transition. 

That fails my child. 

They will require standardized testing every 6 months. And every six months he must show progression or he can be dropped from coverage. 

No specialist, no teacher, no therapist has ever been able to have Eli successfully sit for one of these tests. He doesn't cooperate. His "scores" show a picture far different from the reality - and every person who has attempted one of these tests will tell you that. But on paper he will show as not progressing. 

Never mind that these kiddos go through major transitions that these tests can't take into account. Their parents deploy. They move. Their realities turn upside-down. Military kiddos on the Spectrum are going through a continuous yo-yo that will always have regression. Always.

In the very moments when they need these services most the system can drop them. 

That fails our little giants. 

Parents must participate in all therapies, eventually taking them on entirely ourselves - omitting the therapist in total. We will be graded by how well we perform these services and our child can be dropped from the program if we don't or can't fulfill the role of the therapist. 

Being beside Eli during my time of observation was incredible. I will look forward to it every week. But I have another child - who needs my time just as his brother does. Who deserves my time. I want to know how to do everything possible to help Eli thrive through this life. I will chart his goals with him and I will sure as hell help him to achieve them. I want to learn everything I can to help him. There are incredible people who have spent years of their lives to be trained to help these very special kiddos. Sitting beside them every day will not teach me the things they know. It will teach me how to handle each individual situation I see; it won't teach me how to respond to something new - and every day there is something new. 

Many parents work. The position this puts these parents in is atrocious.

Therapies may not be able to be used to address educational goals. 

Which gets me to no end because so far the public education side has failed us. 

Without question, the one that gets me is the two years part. Two years.

Eli is high-functioning and that "two years" still scares me to death. 

What about the kiddos who aren't?

They deserve better. 

They watch their mommies and daddies fight for this nation. They fight through the confusion and whirlwind of what this life puts them through. 

They deserve better. 

They move and endure and face challenges unimaginable for the sake of being part of a family that serves. 

They deserve better. 

We owe them better.

We must do better.

Or we will have failed our children.

Wanting the World to Know

My kid tried to strangle someone else's kid.

I know that that isn't how I should say that. I know that no mom should ever say that about her child. I know that that sentence is incredibly difficult to read and I can promise you that it isn't nearly as difficult as it is to type. 

But it was all that I kept thinking. My kid tried to strangle someone else's kid. 

I know that he didn't mean it that way. I know that it was an overwhelming environment for him. I know that in total and complete honesty, to Eli, this was just a kiddo the same height as him and he wanted him to stay still so that he could have contact with him. I know - more likely than anything else - Eli was just trying to play with him. To physically keep him where he was. He wanted and needed contact with him, at eye-level, because he wanted to play. I know he was trying to positively communicate.

I know that that was exactly what he was trying to do. 

I know that. 

But my baby put his hands around another child's neck - another momma's baby - and I saw fear in that child's face. 

I pulled him away right away, wrapped him in his weighted blanket, and squeezed him so tight to myself. I went into a quiet room, sat with him, and just squeezed. I held him tight, rocked him, cried and cried, and didn't let go until he fell asleep. 

And then I sat beside him and just watched his quiet, soft breathing.

I know he didn't mean to hurt him. I know there was no malice or anger or intent to harm. I - one-hundred-percent - know that. 

But to the world - and to me - my kiddo put his hands on another child. 

He put. his hands. on another. child. 

-------------------------

We have always talked about how Eli doesn't seem to feel pain. He rarely - rarely - reacts to the things that should hurt. We know now that it is because his brain doesn't process that sensation the same way. Pressure feels good to him - pain, in turn, feels good to him. It's why squeezing him super tight helps him to calm down. Why a weighted blanket allows him to sleep a little longer. Why banging his head didn't seem to hurt him. Why he spins and spins and spins, falls down hard and gets up and spins again.

It's why he bites. It's why he hits. It's why he puts his hands on another child and squeezes hard. 

Asking for a kiss sometimes stops the biting. Putting a hand out for a high-five stops him from hitting. Asking for a hug redirects those hands away from the neck. 

He is trying to make contact - contact that feels good to him - and he just doesn't always know how. 

Watching Eli nearly harm that child - seeing fear on that kiddo's face with the smile on my little giant's at the same time ... I don't have the words for how hard that was for me. 

I know this will get better. I know why he did what he did. I know that this child - my child - is a precious, loving, gentle child. I know all of those things. I know them.

I just want the rest of the world to know too. 

Getting to Feel Love

Eli has finished his first week of ABA therapy. Three days a week, 7-8 hours a day. 

He's doing awesome. 

I have listened to the therapists and assistants talk about how incredibly smart he is, about what he has done and not done, about little improvements he has already made. 

I've seen the changes.

Today he made it through the entire day without needing to hold a train during transitions. 

My favorite part of the day is when they tell him "mommy's here" and he comes barreling straight into my arms. Today he nuzzled into my neck and said with such excitement, "So Much!!" (As in: "I love you sooo much.") Every one in the center reacted to his sweet, sweet demeanor. I am always grateful for how much he cuddles and squeezes and holds on. 

Seeing the other children in this clinic, seeing their parents ... I am so grateful that my son will wrap his arms around me. So grateful that he squeezes my neck. So knee-bendingly grateful that he can tell me "so much!"

I am so grateful that I get to feel and see and know his love. 

I am grateful that my touch doesn't hurt him. Grateful that he needs those tight squeezes and bear hugs. I am thankful that he knows how to communicate that. That he knows how to show that. 

So very grateful.

Giving Up His Days

After a very difficult and frustrating battle with Tricare, Eli is finally approved for and enrolled in ABA Therapy (Applied Behavior Analysis). When that all finally fell into place I was so relieved I felt myself physically relax. 

And it didn't exactly "fall into place" - I had to make phone call after phone call, bust down (okay - not exactly) a few doors, and let other people know I wouldn't let them fail my child. But we got there and he starts on Monday. 

I received the schedule and instructions today. At 8:30 in the morning on Monday I will drop my kiddo off with his lunch, a bag with a change of clothes and diapers, and not see him again until I pick him up at 4:30 that afternoon. 

It's harsh. 

The coordinator even recognized that. She explained that this allows him to immediately recognize routine without us interrupting the very important routine of the little (and not so little) ones already there. It is important for him to focus and have this defined space and time. After two full weeks of therapy, if they think he's ready, I can observe. Logically, I get it. I see why that is how it needs to be. 

This center is 45 minutes from our home - each way. If something happens, I can't get there immediately. If he isn't okay, I won't be there to know. How do you hand your little giant off to people who don't know him? Who don't know him the way you do? 

And what scares me even more ... how do you recognize that for right now - right now - someone else is going to learn how to communicate with your son? Someone else is going to cheer when he says, "Do you hear that?? It's a Train!" like he did this week. Someone else is going to make right where I haven't been able to. Someone else is going to see a meltdown and they are going to be able to figure out how to handle it. They are going to connect and understand my own child in a way that I can't yet. 

I have to drop him off and trust them with that - trust them with my littlest little. What if he is scared? What if he needs me? What if he screams and cries and kicks? How do I give someone else his Mondays? And his Thursdays? And his Fridays? 

He's my baby-baby. My last baby. I want those days. 

How do you accept that you can't understand things about your kiddo that a stranger will learn to before you do? 

I know this is the right thing to try. I know this is a good place for him. I know that intense, early intervention gives him the best chance at "recovery" and adaptability and "normal" life. I know that. I do. I know why we are doing this. I know why we fought for this. 

I know that I want to understand my son. I want to know why he does so many of the things he does. I know I want this for him - that as his momma I owe the very best we can give him. 

I won't be there and that is hard. I have to trust strangers to cheer for him and hug on him and give him what he needs, and in a few weeks to begin to teach me. I want to know my son - to know every possible technique and therapy and behavior possible to unlock his potential. I owe him his future - a bright, promising, glowing future - even if it means I have to give them these days. 

Little Giant's Big Brother

When Eli was diagnosed ... When I listened to the child psychologist, and the clinic coordinator, and the therapists, I couldn't help but have my mind wander to Logan. 

How would this affect him? How would he take this? How do you explain to a four-year-old that he can't behave in a way that his brother does. That what he sees from this little giant isn't acceptable coming from him. That it isn't okay for him to do what his brother does day in and day out without the same reaction we would give him. That his brother can do things he simply can't. 

How do you explain to your bigger little what it is to have a sibling who is autistic. 

Logan has been sick for the last two days. He is - without question - the kindest, most patient patient you will ever come across. He was so concerned that he would get his brother sick. So concerned if Eli got too close or if Eli tried to drink out of his cup. 

It was precious to see. 

This evening Logan sat down with Eli and watched youtube videos of people playing with Thomas trains with him. He clicked on the videos that Eli pointed to, and asked Eli what the names were of the trains on the screen. He stayed patient while he tried to understand what exactly his little brother wanted. 

Together they giggled and sang along and talked about trains and their colors and their numbers. Logan took his time to spend with Eli doing something that Eli loves.

Logan couldn't care less about trains and will tell you (away from Eli, of course) that he doesn't like Thomas the Tank Engine "at all". 

He is such a good kiddo. 

He has learned the trains' names, their numbers, their colors. When Eli is having a melt down he tries his best to comfort him, tell him it's okay, keep calm beside him. He doesn't retaliate when Eli hits or kicks or screams. 

 He amazes me every day. Every day. 

He doesn't "even like" Thomas the Train but he loves his little brother. And for him, he is so good at pretending.

Proud of you, kiddo. What a wonderful brother for a little giant to have.

Emily Perl Kingsley's 'Welcome to Holland'

The day Eli was diagnosed a fellow special-needs mom posted this to my wall. A friend - who has been my guide through this - shared it again today. 

This has been a difficult last several days and reading this again was needed. 

And I absolutely love tulips. 

Photo courtesy of Google images. Original source could not be found. 

Welcome to Holland

by Emily Perl Kingsley

©1987 by Emily Perl Kingsley.

All rights reserved

I am often asked to describe the experience of raising a child with a disability
to try to help people who have not shared that unique experience to understand it,
to imagine how it would feel.

It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.
You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says,
"Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? 
I signed up for Italy! I'm supposed to be in Italy. 
All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.
They've landed in Holland and there you must stay.

The important thing is that they haven't taken you
to a horrible, disgusting, filthy place,
full of pestilence,famine and disease.

It's just a different place.

So you must go out and buy new guide books.
And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.

It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while and you catch your breath, you look around....
and you begin to notice that Holland has windmills....and Holland has tulips.
Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...
and they're all bragging about what a wonderful time they had there.
And for the rest of your life, you will say
"Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...
because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy,
you may never be free to enjoy the very special, the very lovely things ...
about Holland.

Covering Giant Little Ears

I knew the church would be crowded. All of the Chreasters would be there (those who only go to church on Christmas and Easter) and I had no idea how this would go. I wanted us to sit together as a family. I didn't want to put Eli in the nursery like we do every Sunday - wasn't even sure if it would be open. He looked so precious in his seersucker suit - the one Logan was too big for before he even got to wear it. 

He knew he looked cute which made it even better.

We arrived ten minutes early and all that was left was the center of one of the back rows. To exit the pew we would have to climb over people. I can't tell you the anxiety that gives me. So many good friends and family say not to worry when there is a meltdown - that no one notices - but I know, I know, that every single person in earshot notices when those happen. Yes, it is going to make me sweat. Yes, it is going to make me feel like the worst mother in the world. Yes, I will feel helpless and isolated and unable. I am not going to watch those stares and disgusted looks and anything else - and I am not going to pretend for a moment that they aren't there. I am going to take my child away from the rest of the staring and judging world and hold him or not hold him - whatever he wants to do - as quickly as possible. And in church, or any place with rows, that means we sit on the end. 

But we took deep breaths, looked at each other, and politely asked if we could have a seat. 

Eli's face was almost sad looking, his body sunk into C's as we were seated. I could see it, there were too many people around him. Too much of a crowd. He quietly became very still in C's arms. He just cuddled there - not moving, not crying, not making a noise. He didn't blink - he often doesn't blink. Just stared into whatever world he was in. 

He didn't move or readjust when we stood for the opening song.

And then the Gloria started and for the first time I saw my little one's hands jerk up and cover his ears in reaction. He kept them there, pushing his face harder against C's chest. His little hands stayed there until it was over and then for several minutes after. 

He did it again at mass this past Sunday - when the Gloria began. And once more when we sang his little brother "Happy Birthday". No tears. No screaming. 

He just covers his little ears and curls into himself or whoever is holding him. 

He's my little Eli. 

And sometimes, even giants cover their ears. 

Me Milk?

I don't think you ever know how much you take for granted until the "normal" goes away. I don't think you know how much certain things matter until you learn what it is to not have them.

Eli talks. I've talked about that before. He's "verbal". If you have ever been around my little man he has probably ran up to you with a train and started speaking gibberish a mile-a-minute about "Thomas". Somewhere in there would be the words "blue" and "train" and "one" and "friends" but most of it would be a slew of words that aren't words but he'll tell them to you all the same.

He says, "Mommy, you 'kay?" and "Daddy, where's Mommy?" and a handful of perfectly understood sentences. If you didn't know how often he says them, how often he repeats them back to back, you would swear he speech was fine and you wouldn't know any different. If you didn't know it, you just wouldn't know how precious the events of yesterday are to this family.

While I was washing dishes in the kitchen, Eli ran up to me and stopped short just before my feet. 

"Mommy," he stated - not asking a question, but demanding my attention. His little face looked so serious and so focused. His eyes locked straight into mine. 

I crouched down so my face was just before his tiny, tiny, perfect nose. 

"Mommy," he said again. He looked down at his little hand and raised it to his chest. He watched his finger as he pointed it out and then poked it into his shirt.

He looked straight back at me taking a breath, "Me ... Milk?" 

His light grey eyes widened as he watched my reaction. The smile spanned across his face as my own smile stretched my cheeks. 

"Yes, bugah-boo, I will get you some milk." I gave him the biggest hug and opened the fridge.

Eli almost always asks for milk by opening the fridge, pulling out the gallon (yes, the mighty giant can carry a full jug) and bringing it to C and I. He may even say "milk" as he does it. But never, never, has he spoken a completed, original thought like this. 

What is most incredible about all of it is that this precious little knew, he knew, that asking like that ... putting it all together ... he knew it meant something. I saw it in the concentration on his face. I saw it in the joy of his reaction. It was beautiful and special  and heart-hugging.

I never thought my child asking me for milk would bring me to tears. I never thought that looking at a little-little pointing to himself and asking "Me ... milk?" would be joy-filling and celebratory and lead me to my husband to cry into his chest.

You just never know how precious things are until obtaining the "normal" becomes a battle. Until fighting for little thoughts becomes worthy of happy tears.

You just don't know how much it matters until you see the determination and struggle and victory in your little giant's face.

Yes, it was quite the victory.

Beginning to See

It's funny the things I have begun to notice in our little giant. 

All of the time, multiple times a day, Eli comes up to me, looks me in the eye and says, "Mommy, you 'kay?" Just they way Logan does after I sneeze or stumble.

He does it so often. More often than I can count. I thought that was an argument against autism. 

It warms my heart that Eli will say his prayers - our bedtime prayers. I never thought much of the fact that he rarely says them with Logan and I. I actually can't remember ever hearing him say them with us but sometime in the middle of the day, he will try to make the sign of the cross, and with his little voice and his slightly confused language he will say his prayers. 

I thought that would be an argument against autism.

It isn't.

It's called echolalia and it's a common symptom. 

He doesn't just ask me Mommy, you 'kay? when he sees me sad or tired or because I've sneezed. He asks me all of the time, for no reason at all. Sometimes he is looking me straight in the eye with his big, beautiful grey eyes, and sometimes he is on the other side of the room playing with a train. And he keeps asking until I don't just say "yes" but until I say "I'm okay." 

And two minutes later he may ask me again.

He can say his bedtime prayers but doesn't say them at bedtime. He says them while he is sitting on the couch, or in the car, or in the tub, or playing in the snow.

He will say lines from Thomas movies but won't say "Mommy, I want milk." 

He will say the same word again and again and again, in the exact same tone, until you say the word back to him. 

I never knew that meant anything.

He has become fascinated with the fridge over the last week. He likes to go inside of it. (Don't worry, a fridge lock is on it's way from amazon - yes he is small enough to fit inside of it). Today he pulled out all of the cranberry juice bottles and lined them up on the floor. He just kept counting them, "One, two, three. One, two, three. One, two, three". 

He's never done that before.

He took out the bowl of strawberries and climbed up to his seat with his smaller snack bowl on the table. He moved them all from the big bowl to the little one counting, "One, two, three, four, five, six, seven, eight," and then back to the big bowl, "One, two, three, four, five, six, seven, eight."

Is it that I just didn't notice before? 

I've never seen him do that. 

Yes, yes, I have, I've seen him move things from one to the other. I have. 

I just didn't know. 

Innocence

Eli was extra cuddly today. It could have been because he hasn't slept well the last two nights but I think it is because he senses that something is not right. That something has me saddened and confused and ... I don't even know. When he catches me looking at him sometimes he walks over and just touches my face. He senses ... he can interpret emotions, faces, expressions ... he can respond appropriately. 

He can and he does. 

When the idea of autism first came up, I didn't sit down at my macbook and start googling. I didn't sit down and read all of the worst case scenarios and possibilities. Nothing in that is helpful to me. 

When the diagnosis came, I didn't sit down to google - not even then. I told myself I would wait for the report, so I knew exactly what I needed to look for. Exactly what led to the words. 

I know that "high-functioning" was said at some point. I know that we talked about eventually cognitive tests. I know she said he seems "highly intelligent". I know that in the initial paperwork "aspergers syndrome" was not checked and that "autistic disorder" was. 

I know that she explained that he can be so loving and affectionate to me and playful and cuddly and respond to my emotions and still be on the spectrum. I know that she explained that he can be smart and witty and quick and very much be on the spectrum. 

I know that she explained it all. I know that she showed me, section by section. 

I know the only thing that I have really looked at is the 100-day kit on AutismSpeaks that talks about the diagnosis and the stages of grief. I know that it is normal to question if this is real - if a mistake was made. I know that it is normal to think "no, not my child" but, goodness, he sees that I am sad and puts his hands against my cheeks! He cuddles in my arms and looks at me and holds tight. He asks me, "Mommy, you 'kay?"

But he asks me that all of the time - the same phrase - all of the time. Whether I look sad or not. Same phrase - all of the time. I know she talked about that.

I want to talk to a mother who has a baby that is just like mine. Who in so many ways "doesn't fit" everything that comes to mind when you hear the word. I want to speak to someone who has been here, right here, begging to know which is the answer. 

I want to know if the little things really do add up to this major change. The little voice in the back of my mind is saying they do. The little voice is bringing back the moment in that evaluation when I realized that Eli didn't look at the psychologist until half way into it. That he could act like he absolutely did not hear her when she was talking right into his ear. How he wouldn't pick up the block and pretend it was a phone. How confused he looked when she tried to guide him to. Part of me is remembering today, when he put his little face flat into the snow so that Thomas was just in his face and how he would cover him again and again with the snow,  and then with the towel, and then kleenex, the fruit loops, whatever. Always covering Thomas. He didn't even seem bothered with how cold the ice was against his face. Every time I pulled his little body up, he would lay his face right back down. His cheek was so red. The little voice brings up how he puts so many toys in his mouth now - how he licks things - when he never did that during the stage that he should. The little voice brings up how much I have noticed how he flaps his hands towards his face when he gets excited - something I just didn't see before - I never saw it before that eval. 

But he looks at me and says again and again, "Mommy, you 'kay?" Again and again. He doesn't even know. He has no idea what any of this is - what any of it means. 

Such an innocence. Such a genuine goodness. 

How can any of it be true?

Denial

Three hours past the beginning of the boys' bedtime routine I have my little giant clinging to my legs sleeping on my bed. I gave up two-and-a-half hours into it. I thought we had it. I thought I finally had him good and dreaming when I quietly closed the door and went downstairs to clean the kitchen. 

His piercing scream minutes later let me know I hadn't won the battle. Screaming and shaking he came down the steps and gripped me, trying to climb me while my hands were transferring the left-overs from a warm crockpot to the storage container. Once I had completed that one task with a child wrapped around my legs, together we went upstairs and climbed into bed. He is still off and on again thrashing in his sleep, letting out a scream here or there, not letting me touch him when the nightmares (or whatever they are) come.

I hope he sleeps.

So much of today the voice inside my head was arguing that this isn't right. That that psychologist was wrong about him. When he said, "Good job, Mommy," when I turned on Thomas the Train for the umteenth time I convinced myself that this wasn't reality. Never mind that no one else would know what he said. I know he said it. I know and he's my son, I would know if this was true. A mother would know ... wouldn't she?

When he lined his trains up along the TV stand I justified that he only did that because they just happened to be at the same height  - the stand and him - even if he did have to bend down to get his eyes to the wheels. When he moved them to the wicker chest we use for a coffee table and he knelt down to be at eye-level I told myself he just wanted to kneel. It wasn't because his eyes needed to be at the same level as Thomas the train. It wasn't that at all. When he lined them up on the ground and then laid his cheek flat against the carpet, every part of me tried to ignore that. 

When he turned around in circles until he fell into the column dividing the living room and dining I told myself he is three. Three year olds do that, don't they? Three year olds don't cry and get right back up and spin and spin and spin again ... don't they?

I spent so much of today wondering how I get another opinion, wondering who would tell me that the first person was wrong. The first person who explained it so perfectly. Who broke it down and showed me what I knew I had seen.

But what if I hadn't? Maybe I was wrong.

What if she is wrong? What if we put this label on him - that we can never, never, never take back. What if we "make" him something that he isn't. What if it is just me and how I parent him. What if I am changing my child's world - changing even his adult world - when it really is that I am inadequate. What if I am taking something from him that isn't mine to take.

What if we label him and this person is wrong. What if we are changing his life on an error.

What if by trying to do the very best by my baby I am doing the very worst. 

How do you process? How do you know?

How do you know. 

Our Little Giant

All I wanted to do was get out of the store. I just wanted to leave. But for whatever reason my cashier was the slowest cashier, taking extra care to be sure everything was placed in the bag a certain way, very methodical, very precise. 

Looking back on it now, the behavior seems familiar. 

He wasn't remotely phased that my barely-three-year-old was screaming at the top of his lungs, hitting his brother, thrashing his head back because he had seen a Thomas the Train book and I hadn't given it to him. I honestly don't know if he really noticed but the woman at the other check-out, there was no question she noticed. 

Her eyes pierced me. That look on her face - that look of disgust. She wanted me to know she thought I was the worst mother on the planet in that moment. She didn't look away when my eyes met hers, she just let them dig deeper, shamelessly letting me know how much she thought I was failing. 

In that moment I felt broken, and helpless, and defeated, and angered because why couldn't I stop this? Why couldn't I keep him from acting that way? Why couldn't I calm my own son down?

I was failing.

When Dr T first brought up the need for an evaluation I didn't know how to react. I didn't see it coming. I just ... I hadn't thought about it. I really just hadn't. And even when we went forward, I was convinced that this was just me doing everything wrong as his mom. That I was failing and unable and unsure and not a good mom to my littlest little. I thought we would come out of that evaluation with no diagnosis but a mother who was unable. 

In the moment that doctor put her papers on her lap, when she put her hands together and leaned in towards me, I knew that what she was about to tell me was not what I was certain was going to be said.  I knew in that very moment that my heart was breaking - right then. I knew that our family was changing.

I knew it during the evaluation. I saw things I hadn't noticed before while she was playing with my baby. When she broke it down for me, I knew she was right, I had seen exactly what she had seen and before then I just hadn't.

And for a split second I felt relief. 

For a split second I didn't feel like a horrible mother who couldn't understand her son. For just a moment I didn't feel like I was incapable or unworthy or unable. For just a second I felt like I could breathe again.

It has hurt so much to see the stares, and to have to apologize, and to have to explain why we don't usually bring him to people's houses. It has been so hard to watch a meltdown that makes me feel helpless and inadequate as a mom. 

I have just been so tired.

We have always called Eli "mighty", "strong-willed", "little giant". He is strong and determined. Fearless - sometimes too fearless. 

He brings so much joy. He is happy and fun and funny and loving - except in the times when he isn't. He is always at my side. I am his safety which is the very reason I couldn't see it. I am his comfort. He is mine. 

This begins a new journey. Little by little we will enter into his world and little by little we will bring him into ours. 

Eli is our little giant. Fearless. Able. Determined. How incredible it will be to watch him thrive.