Monday, September 30, 2013

Asking for help

One of the hardest things for me to do, other than admit I'm wrong, is to ask for help. I hate doing this.

For me, admitting I need help is to acknowledge that I am failing to control, accomplish, or figure something out. I feel like I'm giving up.

Admitting I need help is akin to me crying. For me, both are signs that I'm cracking and have weaknesses which can be used against me. Silly, isn't it? There isn't any shame in either of those things. And yet, here I am.. being ashamed that I have been crying daily since last Sunday from both pain and worry.

I have no qualms comforting someone else when they cry. I am usually the first to jump in and help those in need. However, when it comes to me, I feel as though I am failing myself and, consequently, failing everyone else around me because I cannot do it on my own.

This is such a ridiculous thought process.

After asking some of my friends (all special needs moms), I found that I'm not the only one to feel this way, which made me feel less crazy.

Among the responses, I was told that they don't ask for help for fear of looking weak, incapable, being gossiped about, and the thought that no one can really do it like they can. And you know what? I can relate to every single response.

There's the reliability factor. Oftentimes, someone will say they will help and then not follow through. As a special needs parent (or, I suppose, any parent), this is a major issue. What if you're needing help watching special needs child #1 while you take special needs child #2 to the doctor and your respite worker or sitter cancels? Then you're screwed. If this happens even more than one time, you develop trust issues.

Avoiding pity is a big factor when not asking for assistance. We don't want your pity. We know when we're being pitied. It isn't pleasant, to say the least. And we know when there is condescension. We know when people see watching our children as a chore, and that hurts like hell.

For several of us, it has been drilled into our heads that the only people we can rely on are ourselves. Being taught independence is wonderful, but at what cost? When you're breaking down and needing to reach out for help, how do you go about that?

Trust seems to be the biggest key with all of us. How do we trust someone to help us? Trust that this person will do a job well enough that it's even worth us swallowing our pride and reaching out and asking for help? I know that, in the past, I've asked people for help and they've basically watched television while I did my everyday chores, chased kids down, and wound up more exhausted than I was when I started. I was asking for help, not to babysit someone else.

Also, who can we trust with our children? I know I can count on one hand the number of people I can trust to watch my boys.

We shouldn't be afraid to ask for help. 

We shouldn't fear recriminations for doing so. 

We shouldn't feel ashamed for needing help. 

We should follow the policy of "love thy neighbor" enough to want to help when we see someone in need.

We should, as human beings, not be afraid to ask for help. When we're at our breaking points, there should be no shame in asking. And yet, every time I've asked for help or received it in the past week, I've both thanked people profusely and then apologized to them. I feel shame in being "needy."

I've been messaged by people all over the world since Friday's post, asking how they could help my boys, my husband, and me. I've been told that I'm brave for speaking up and asking for help, but I'm not. I'm asking for something for my children, not myself. I can't stand asking for favors for me. All I might have done is be honest about feeling so steeped in my own pain that I can't do for my children what I normally do. I took a chance. That's all.

Asking for help shouldn't be this hard, but it is. I always feel like I'm failing myself and my family when I ask for it. It just shouldn't be this way.

If you see someone in need, someone struggling, or someone with their hands full, ask if you can lend a hand. Should they say "no," please assure them (and please mean this), that you are there for them should they need help.

Just the offer means more than you know, especially if they are a mom like me.

The Domestic Goddess
Jo Ashline-A Sweet Dose of Truth- The Blog
My Winter Butterflies
My Whac-A-Mole Life
Kelly, Military Special Needs Network
Pancakes Gone Awry
Beyond the Dryer Vent

Sunday, September 29, 2013

When Nightmares are Reality

I had a dream that, at first, was so real, I nearly believed it to be true. We were at the beach. I was healthy, playing with the kids, running around, laughing, free of pain and everyone was smiling. My mind then whispered, "This is a lie. You need to wake up." In the dream, a tidal wave filled with pain washed over me. It tore away the happy moment, the laughter, and the smiles. Then everything went black, cold, and I was in gut wrenching pain.

I woke up drenched in sweat and found that the tidal wave was real. I was in pain, a lot of pain. And that pain was washing over me like a tsunami.

That dream is my reality.

Dreams are, very rarely, reality. Unless they're nightmares.

I keep hoping and praying that this is all in my head.  That this is just a nightmare. That this is psychosomatic, that this really isn't happening. 

But I know it is real. 

It is happening.

I am not making this up in my head.

I'm certainly not dreaming it. 

Illness of any sort will have an effect on any person and any family. In an autism family, like mine, I think it's harder. We already feel like we've been running a marathon for years that is never ending. The finish line, as soon as it's in view, recedes back into the distance (thanks, regression, you're an asshole). Throw some illness in there and all sorts of things pop up. Like Morgan perservating on the idea of me dying, and him scratching his head (new stim) until it bleeds. Then Bay had a potty accident at school for the first time the other day and who has been exceptionally sensitive lately. 

They are both terrified and I can't blame them. Their mom isn't their usual mom right now.

My biggest fear is not being able to take care of my children.

When we noticed autism in Morgan, one of the first things I remembered thinking is, "I can't die. I can never die because no one will be able to take care of him the way I do." I find this sentiment to be true for a lot of special needs families. I try not to think about it, but it's always there. 

That dream was easy to interpret for me. This pain washes over me in waves, stealing moments that should be, by all rights, mine to enjoy. It knocks me down, tears everything apart, and even knocks me out. It's drowning me. 

This is scary. 

I am trying to be so damn brave in front of the kids. To not break down. But that is incredibly hard when I can't escape my own body.

*Editor's note... I promise sometime soon I will get back to talking about autism. I swear. It's just that right now, this is what is going on in our life as a family and it's the vortex that sucks everything in. This blog is also my place to vent. I won't make apologies for that. 

Friday, September 27, 2013

A favor, please

Dear Readers,

I'm not looking forward to this next month. In fact, I'm dreading it.

In the next week, I will have to take Morgan to the neurologist to begin testing for seizure activity and then, on Friday, I have my consult for my surgery for removing endometriosis from my bowels.

Fun stuff, huh?

I always say that when one shoe drops, get ready for the next one... because God knows, it will hit. But I'm kind of a pessimist.

I know that insurance will not cover the full cost of my surgery. Our insurance is just plain crappy like that. We have a deductible to meet and it's high. To put just our drug plan into perspective, each month, I spend $97.00 on one drug, just one, and that's for me.

You can't see the pillow & heating pad separating me from my loves
The best things about the month of October are Morgan's birthday and Halloween. I love, love, love planning parties, but this year, I know, will be different. I will be recuperating from surgery. I might not be my "normal" self. With the OOP (out of pocket) expenses, things will be tight. Also, this kid (and his brother, to be honest, who isn't handling things well at all), needs cheering up from dealing with his mom being ill.

Even at my best right now, I'm limited on what I can do. I cannot stand for long periods of time because I will double over with excruciating pain and pass out. I vomit- a lot. I cannot drive right now because I never know when I will pass out. I cannot do all of the 1,001 things I normally do.

We're cuddling a lot, but I cannot stand to have them touch me because the pain is that intense. It's like childbirth, but worse, because it never ends.

They are witnessing me pass out, vomit, and/or scream from sheer pain, even when I try to hide it from them. This is not something a child should ever see. Ever. They are worried and it shows.

We need some cheer, y'all. 

So, I'm going out on a huge limb here. I'm doing something that I would never think to do in a million years.

People keep asking me, virtually, how can they help? I keep mulling this over and this is the only thing I can come up with. I'm asking that each person who reads this blog send Morgan a card, if you can. You can send a present, if you want, but a card would rock his socks off.

Please, help me cheer my kid(s) up. Help me make Morgan's birthday extra special. He knows that I write this blog about him and our family. He loves mail, in any form. He loves postcards from different places, cards, packages, etc.

Bay does, too. I'm including him in this because, frankly, it's confusing as hell for his five year old brain to process his mommy being in this much pain and passing out from it. Also, sibling rivalry isn't pretty.

Messages posted to my Facebook wall are great, too.

Morgan's birthday is in the third week of October. I'm hesitant to post his actual birth date until the actual day because of privacy issues. I feel like I'm already baring my soul and pride in this post and blog so much, so some things should be kept private until they cannot.

Should you choose to send something to my son(s), here is how:

You may mail letters, postcards, cards, or packages to
c/o Thomas Cash
Laborde Products
74257 Hwy 25
Covington, LA 70435

Morgan loves Thomas the Tank Engine (obviously, there are whole posts about this) anything. There is a new movie out called "King of the Rails" which he is incredibly excited about and there is a ton of paraphernalia surrounding it. He also likes Mario Kart, books on trains, Clifford the Big Red Dog, the ocean, reefs, and shells. 

If you're interested in sending something to cheer up Bay, he loves Legos sets, Skylanders, art supplies, books on anything (especially level 1-2 readers), and Minecraft. 

From the bottom of this mom's heart, thank you for the love and support that has continued to pour forth to me and my family. If anyone every tells you that online friends aren't real, they're lying. I've had more people check in on me to give me a laugh or offer an ear this week than I ever thought possible. 



Wednesday, September 25, 2013

I Cannot Break

I am writing this through tears. I am in an unconscionable amount of physical pain. Today alone, the pain has been so severe that I have vomited, fainted, and then fainted after I've vomited.

Something is wrong with me.

I cannot break. 

I am mom to Morgan and Bay. I am Mom. I am wife to Thomas. I am the axis upon which their world spins. But something is not right.

I am in pain. A lot of pain.

I cannot break.

I was promised relief three years ago when they made me less than a woman, when I had "everything" that makes me a woman taken away. I wasn't okay with this, but I did it to watch my boys grow. To grow old with my husband. And now, it seems, one of those monsters is back. And it feels like it is eating me alive.

I'm so mad. 

The past 72 hours or more have been pure hell. I can't eat. I can barely sleep. It hurts to actually laugh. I'm scared to walk outside and I refuse to drive because I might lose consciousness.

I cannot break. 

I am in a lot of pain.

My kids are scared, very scared. I keep explaining that Mom can't die, that I just need rest. But how does it look to them, at the ages of eight and five, to see their mom passed out on the floor? To find me vomiting? To see me on my hands and knees, crying, and begging God to please take away my pain?  To see their mother crying uncontrollably because she just can't escape the hell that is her own body?

They've seen me sick too many times. This isn't right. No child should have to experience seeing their mother in a hospital. This time is different than the others, but they are older now. They remember last year. They know that when Mommy is feeling really awful, things aren't good. They are anxious.

I say I cannot break, but I feel so broken. 

I'm so angry at my body. And hurt. Why would it do this?

I have an amazing support system, both virtually and in real life, I've discovered. When I was in the ER last Sunday, I kept getting texts from people I've never met in my life. Yet, these people cared enough to ask how I was doing, how the kids were, how Thomas was handling things. If you're reading this, please know that there will never be enough "thank yous" to express the amount of gratitude I have for your act of kindness.

I can't break any more than I already have. 

I feel, right now, like there isn't much left to break.

Tuesday, September 24, 2013

We Are Not Invincible

How many of us go through each day as if this could be our last day with our children? So, we give them extra hugs, kisses, and pencil in more time for them. We shut off our phones, unplug the iPads and laptops, turn off the televisions, and allow our families to just be. 

I'd be willing to say not enough.

We are not invincible.

We are not superheroes or giants, rushing out to save the day, put out fires, and slay the evil dragons. Our children might sometimes see us this way. I hope the schools do, to an extent, but this just isn't how life works.

We are not angels, of mercy or otherwise.

We are human beings. 

We are parents.

We are people who just happen to be raising people with different abilities.

We rarely ever take the time to consider a lot of this and become so overwhelmed in the day in, day, of it all that we don't breathe. We barely listen to what our hearts and minds tell us we should be doing.

How many of you are kind to yourself? I know I'm not. I'm probably the least kind person when it comes to self loathing I know. Don't follow my example, please. This can be a very dark place and this hole is hard to crawl out of.

Be kind to you

We put things on the back burners because "there will always be tomorrow." I hear that mantra a lot (hint: I hear it from me. The mantra comes from me.). But there may not be a tomorrow. Or your tomorrow might look drastically different than you imagined.

Soak up the moment, it will help you savor the here and now. Don't allow one bad moment or bad thought destroy the entire day.

We are not invincible. 

Do me a favor, do something. Anything. Just do something. I don't care if it's doing that craft project with Suzi that she's been begging to do, or if it's zip lining. Spend real time with your child. As in, one on one time, not shuffling them back and forth to sports or therapies. Paint with your kid. Go looks at bugs. Spin and flap. Just try it out.

I'm scared to death that one day, my kids will look back and see more "bad" moments from me, moments of me feeling like crap thanks to RA, autoimmune disorders, VVS, and female problems than anything else. That isn't the mom I want to be known as.

I'm not invincible. But I'm their mom and I have to be a great one. Period.

Don't forget, you don't have to be supermom, just be a good mom.

Go be great today. 

Sunday, September 22, 2013

Getting Back to Me

As the parent of an autistic child, how well do you take care of you? If you're anything like me, you're allowing yourself to fall by the wayside. You keep a smile pasted on your face, crack jokes, and drink wine, but you're not taking care of you.

You skip your doctor's appointments (including the really important ones) because you don't have the time. Or the babysitter. Or the courage. 

Sometimes, or all the time, you might feel as if you're losing your mind and you don't know where to turn. You might actually go to the doctor, explain that you have OMG stress, and the doctor gives you pills, a pat on the back, maybe a pep talk, and sends you on your way. You get a momentary shot of confidence, of "things are good." But what about after? What happens then?

Something is missing.  I've been missing.

I've been pretty cruel to myself and those around me for quite a while. I've allowed myself to get caught up in the autism and life gauntlet of worry, worry, and more worry. The stress of trying to sell a home from 800 miles away and the financial implications of that have tapped me out. I worry all the time.  I've stopped taking time for me. It's okay, we all do it. But at what cost?

Due to stress and other nonsense issues, I've stopped creating things I enjoy. The thing is, those used to be my stress relievers.

I'm considered a creative person. Yet, I don't do many creative things anymore. I stopped making sea glass jewelry, hair pretties, and getting excited over finding "just the right color" of paint or finding a deal on a canvas.

I've been angry. At what, I cannot tell you. I just know that I've been incredibly angry for a very long time. I have a lot in my little large Pandora's box of secrets to be angry about. Anger hurts so many people around you and it hurts you worst of all.

This week, I found out that I've been back in surgical menopause for a while. I had a hysterectomy three years ago, so without the right amount of hormones, this is always a possibility. I have not been on the correct amount. At all. My doctor was wonderful and put me on a new dosage plus a lovely sedative.

Nearly instantly, I could feel a difference. I didn't hate people! I started a yarn wreath for fall. I began making plans for more crafty things that I know I can finish. I wake up feeling, if not refreshed, excited for my day to happen. And, TMI, but I want to have sex again. Granted, I get a bit weepy from HRT charges, but whatever.

I've ticked more things - both tangible and mental - off my to-do list in the past four days than I did in the past month. Some of them were completely frivolous. Most of them involved taking care of myself or doing something for me.

I've spent nine years now as someones mom. Ten as someones wife. I love those roles. But I feel sometimes as if the things which make me, well, me have been pushed onto a back burner. The person really pushing those things back there was me.

People don't really know me because I keep myself bottled up tightly. Those who do know me are sometimes surprised when they find out little factoids about me. Sometimes this weirds them out and has, depending on the subject, hurt feelings. For as much as I do say, there is much so more that I don't.

People know I'm snarky, they know I can be funny, loud, love to drink wine and coffee. But how many know that I'm a complete bookworm? Or that my favorite colors all revolve around the shade of teal? Or that I love, love, love to create anything pretty? Or that I once spent 24 hours nearly straight carving pumpkins for the kids because I love doing that (also, everyone knows that the pumpkin is one of the neatest mediums for carving, period.). Or that, every year, I buy unfinished porcelain ornaments and nutcrackers around Christmastime and hand paint them?

I never finished my college degree, yet I'm far from stupid. I'm a survivor of sexual, mental, and physical  abuse. I believe passionately in the death penalty in a lot of cases for the reasons I just stated.

When I said, "I don't live out loud," I meant that I'm not very honest with myself and, as a result, others. I love helping people. But how am I to do that if I don't even help myself?

How am I being a good mom, wife, and person if I'm not being good to myself?

Are you good to yourself? Do you take even a few minutes for yourself at least once a week? Have you given up something that you love doing? Do people know the real you?

Wednesday, September 18, 2013

Conversation With the Ginger

My little gingerdemon
My ginger kid kills me. I mean, really. I have the funniest and, sometimes, most bizarre conversations with this child.

Like today, when he told me how he was going to marry off his brother but still live with him.

"Mom," he said very seriously, "ya think when I get married I can find a girl for Morgan?"

"Um, Bay, you really should let Morgan pick out his own wife. It's sweet that you want to do it, but this is pretty 18th century nobility of you."

"But Mom, I love Morgan. I know what kind of girl he needs. Listen!"

"Uh, okay?" I was trying to take the kid seriously, alright?

"Good. Because here's the deal: she needs to be smart, funny, and love, love, LOVE trains. A lot. You know Morgan likes trains, right? And we're going to have a big train room in our house when we grow up."

"Wait a sec, Bay. You know that when you're married, you'll live on your own, right? And Morgan will live with his wife, right? That's is usually how this type of stuff works. Unless it's part of your religion or something."

"Well, Mom, I've gotta get Morgan married. Gotta get him married. But we're a team, me and him. And who's gonna drive me around? MORGAN, that's who. Morgan's the driver because he's awesome at Mario Kart."

I damn near choked. He thinks his brother is going to drive him around, huh? Okay...

"And Mom?"

"Yeah, doll?"

"You're still gonna cook. I like your cooking."

"So, let me get this straight, okay? You're gonna pick out Morgan's wife for him? And y'all are going to live to together with your wives. But he's the only driver. However, I'm the one cooking? Did I cover everything?"

"Nope! This is the best part! You're gonna do the laundry! And the cleaning! You're great at that!"

I laughed. This is kid is funny. And clearly off his rocker.

As I walked away to come type this, I heard, "Mom? You know what? You're really pretty. And smart. I want to marry a girl just like you." 

My gingerbaby
Meh. That kid isn't so bad. I'll keep him for a while.

Tuesday, September 17, 2013

What is being taught?

I know that I can sit on my soapbox as easily as the next NT parent and argue it is my right to feel how I want about my son's neurology. Because it is. You should own you feelings at all times. But what happens when those feelings are a possible detriment to your child?

What are we, as parents, teaching our children about their own diagnoses? Are we telling them it is okay to be different? To be autistic? I know what I am teaching my sons about acceptance and promoting that. However, I worry what Morgan (and Bay) learns from other kids who have been taught inadvertently or overtly that his neurology and their own are bad.

To me, autism isn't bad. It's not always great in this house. It just is.  

Once my kid leaves my house each day, I have little to zero control over what kind of attitude toward disability he will encounter. Even when I am with him, I cannot control the looks of pity, sometimes anger, confusion, or anything which could be construed as negative toward his being autistic. How do I explain the conflicting attitudes?

Yesterday, we were driving home from school incredibly happy. "Mom, look! Autism ribbon!" I heard from the back. I squinted at the car in front of me... yes, it was an autism ribbon, of sorts. In the center loop of the ribbon, I spied the acronym "F.U.A.," something which I've grown familiar seeing tattooed on parents, on bumper stickers, some memes, and within statuses and blog posts. I tried brushing it off with something, but Morgan was too sharp. "What's fu-ah?" "Um, it must be an autism organization, honey." "Are you in that?" I answered firmly, "Nope."

It is more than okay to feel as if your kid's autism is kicking both of you squarely in the ass. God, I feel like that on a lot of days. But that is my son's neurology kicking my ass and his. I could not separate it from him if I tried. It is okay, I think, to not love the hand you are dealt. I don't love that my son blacks out and is incredibly aggressive with me sometimes. I don't love that I am his trigger some of the time. I don't love that I lose my shit and yell, "That's it! I'm done for the day!" and then I feel like shit.

But am I teaching my son that I am done with autism, him being autistic, or him? This is beyond hard. Where is the line I have to toe?

I don't want Morgan to grow up and think that autism is a reason to be hated. To be looked down upon. To be abused. To be pitied.  But if I were to allow him to read any of the news, or watch it, he might glean that. If he, even once, hears "I don't know how you do it," what is he learning? And please, don't tell me he doesn't understand. He does. He might not "get it" in the way the society thinks he should. He might internalize things that I think he should not, but I'm presuming competence here, going out on a limb, and assuming my son understands that these things being said about autism aren't great. I'm keeping my news turned off lately because I don't want public perception to teach him that autism is a reason to be violent towards your child or that autistics are all violent.

Sometimes, on the very hard days, when I want to break down and cry, I can't. I keep a shaky resolve up, I put my kids to bed, and I take my very weary body outside on the balcony and then break down. I think that I'm not strong enough to raise an autistic son. I get so damned tired of second guessing every single thing which comes out of my mouth or my actions before they happen. This isn't the way I ever thought I would parent- counting milestones that others don't even know exist, walking on eggshells, and not daring to look into the future because regression might steal something. But dammit, I won't say any of this in front of him. He's worth every bit of every thing I do.

Perception is everything. Am I teaching my child to perceive his abilities as bad things?

Wednesday, September 11, 2013

Undocumented Goals

I know that this year, I have been writing a lot about the (big and small) goals Morgan has been achieving, but I'm still finding new ways that my son and those around him are completely blowing me away. Third grade is looking to be a great year in the Deciphering household. 

Aside from reading better, the goals I'm thinking of right now aren't all in Morgan's IEP. They cannot be measured by anything other than emotion. A sense of well being. The feeling I got the other day that karma was giving my son a huge hug and letting me know, as his mom, that things were okay for now. 

Open communication was a goal attained without me having to state it. Morgan's para and I text each other. I am getting amazing feedback from her, Morgan's teacher, and other support staff every time we discuss him. What I love is that they don't just say things like, "Oh, he's sweet." No, they detail exactly what Morgan does throughout the day that charms them, stuns them, sets him apart from other children, and fill in any gaps of information I might have. They also rat him out when he's being lazy or has been tattling on the other children. They do not hesitate to answer questions I might have. And they are always upfront with me. No matter if it hurts. 

People speaking respectfully about my child was a goal I didn't realize I wanted so badly until we'd went so far past achieving it that I'd grown used to it. I didn't fully understand that this is what had happened until earlier this week. I'd introduced my mother to just about everyone who works with both children and the knowledge that I genuinely like these people and am not stressed by seeing them hit me full force. I don't hate coming to the school because I know my son is welcome there. People treat him as a whole person, as they should. That is not a small matter. 

My favorite part of those people is that they never try to force or suggest that our goal is for Morgan to "blend," or to "act normal." There are no real definitions for that, as I've pointed out to educators before, and these people get it. They love my son as he is and wish to help him succeed in his environment. 

I hear from two sources at the school that Morgan has begun to play foursquare. People, this is huge. He's playing with kids -all sorts of kids- at recess!

I am seeing the best example of social inclusion I've ever witnessed. Perhaps this isn't a goal by some people's standards, but it was one of mine. My mom and I were able to eat lunch with Morgan this week and he was so funny introducing me to his friends, by name, flappy happy. Even better, his friends were excited to talk to Mom and me. They asked questions about Morgan, my mom, and me. They were eager to tell me how nice Morgan is to them, how great of a friend he is, how polite, how smart, and how they help him. My guards were up at first because of past experiences of kids being nice at the lunch table when I'm around and then laying into my son after I leave, but then something happened...

Morgan answered a question with a script. He scripted something that didn't quite fit the script. The girls, instead of looking at him oddly, teasing him, ignoring him, or cutting their eyes, all seemed to digest what Morgan said. You could tell they were trying to look beyond the words and search for the meaning of the script. One of the girls, who had been in Morgan's class last year, brightened, smiled, and replied to Morgan in an appropriate way, never once negating what had been said. Never once treating the meaning of his words as if he had said something worth making fun of or silencing. They then went back to chattering like little magpies as Morgan happily soaked up the attention of his "beautiful like a rose" girls, his Babe, and his mom. 

Sitting in that cafeteria, I realized that another goal, one I've been worrying over night and day for a very long time, might be at least temporarily crossed off. 

My son has peers and teachers who try to understand him. Who accept him as Morgan. They aren't looking at my son and thinking "less." They might think, "different," but that's okay; Morgan is different. He is wonderfully different. 

The world might not accommodate him and his autistic peers. Acceptance and equality are incredibly hard to come by. But for right now, something is going correctly. In my little corner of the world, for seven hours a day, not all of my goals for Morgan have to go on paper. There are people willing to work with him and me to assure that Morgan is accepted, given an education, and cared about.

He matters and right now, that matters so much. 

How do you measure goals? Are they something you must put in writing? Things which are noticeable to the naked eye? For your child, are they things which are only included in a document, for the progress towards them to be measured in incremental steps?

Tuesday, September 3, 2013

A letter to my son


Friday night you said, "I know I'm different. But why?" to me. I couldn't answer you with anything but a nonanswer because you caught me off guard. I know I told you that "different" is how you are made and that's terrific, but that's not what you were asking, was it?

I know that you weren't needing your mom to break down and have a brief ugly cry and I'm so sorry for that. I wasn't crying for you being different, son. I was crying, in part, because you realize that you are different and my fear being realized that you might not want that "differentness."

I don't know exactly why you're different. Why you're autistic. No one knows for sure.

You know you're autistic. You've known since you were six and that's not something we've ever believed in hiding from you because autism is nothing to be ashamed of. Neither is being different.

Everyone in the world is different in some way from the next. Not many seem to actually realize this. People search for these things in one another called commonalities; those are what bonds us, makes us feel like, even though we're individuals, we're also united by a common thread. What bonds you to so many other people is autism, age, hair color, nationality, love of Thomas the Tank Engine, and your love of bacon.

There are a lot of people in the world, considered different, who are also autistic. These are your tribes people, so to speak, and each of them are different from you in your unified differentness. Isn't that cool? You already know some of them and even had a play date with one of them this weekend.

We're fully encouraging you to seek out your autistic peers because we think that you need to be around your people. We're not pushing you to "pass" as anything but Morgan, so you can have relief in that. We want you to be you, even if you're "different."

I know that I'm not clearing up anything for you and that's because I can't answer your question. I could tell you that you were born autistic. I could tell you that God made you with more than extra dash of special. I could tell you all of these things that I wholeheartedly believe. However, I don't think that would satisfy any anxiety you might have.

Just know this: don't ever allow anyone to convince you that being different is synonymous with being lesser just as normal should never be synonymous with being greater. Each are only man made concepts. That is all.

Honey, we have more different than normal in this family, okay?