Should You Tell Your Child About Their Diagnosis?

“When should I tell my child about their diagnosis?” 

“Should I even tell him?”
“I haven't had the heart to bring it up yet.”

Once upon a time, children who were adopted were rarely told that they were adopted until they were adults. This would be a devastating revelation because by that time, they felt that their whole life had been built on a lie.

Keeping a child’s diagnosis from them is the identity lie of the 21st century. 

We would only commit the lie of omission because the thing we hesitate to reveal is bad, right?

As much as you may not understand it, a mental health diagnosis is part of who your child is. Even a diagnosis we learn to overcome, such as anxiety or OCD, leaves grooves and scars, and shapes us in ways that a neurotypical person will never understand. If someone you love has a diagnosable condition, you may feel and even hope that if you ignore it, they can ignore it also. Life doesn't work that way.

Any health condition, and any mental health condition, is something that is going to make life more difficult in some way for the individual. If the atmosphere in your house is that “we don’t talk about this,” then the individual will probably feel that they shouldn’t talk about their difficulties. They should try harder to be normal, or at least look and act normal. The fact that this is a struggle when it seems to be so easy for everyone else is a cause for depression, heightened anxiety, mood disorders, self-harm, and even suicide. This isn’t hyperbole or a scare tactic. Children who commit suicide overwhelmingly deal with the struggle of trying and failing to fit in.

Ignoring the issue won't make it go away. It makes it worse.

No matter what you do or don’t do, your child will know that they are different. 

On the other hand, knowing that it’s not all in their head, or that there are others like them with the same struggles, and that it isn’t their fault for not trying hard enough, can be a bittersweet relief. In our desire to fit in, even finding a seat with your name on it in the Island of Misfit toys brings the comfort of community. And there is a community with your name on it.

So when should you tell your child about their diagnosis? Right now!  

How should I tell my child about their diagnosis?

The diagnosis should be revealed in a positive way. Parenting isn’t about you, it’s about them. You can have your cries in the dark corner of the Target parking lot, or get drunk and compare parenting notes at the next Moms' Night Out. And if you haven’t found your local special needs parenting community, that should be your next mission. They’re out there. But when you talk to your child about themselves, it’s about them, and your struggles parenting them shouldn’t have a voice in the conversation. Their identity shouldn’t be tangled up in improving your life.

My son was quite young when I started talking to him about his autism for the first time, and his receptive language skills (the ability to comprehend what’s being said to him) was low, so I kept it simple.

“Your brain works different than a lot of other people. That’s a good thing! The world needs people who think different. My brain works different too.” 

As he and his comprehension grew, so did his questions. I got books that we read together. He spent a lot of time among non-typical peers, and among our special needs community. We could both relax around other families who don’t blink an eye at odd behaviors; the ones that make everyone uncomfortable in neurotypical groups.

And like that, autism has always been a word in his life. There are no bombshells, no feeling isolated because he’s not like anyone else, and he doesn’t feel any negativity about his diagnosis or himself. He’s actually rather proud of his differences, while still understanding the extra struggles that it's brought him.

Talk to your child about their diagnosis, keep it on a level they understand, grow the conversation as they grow, and keep it positive. Find your community of non-typical peers and parents who laugh in the face of a meltdown.  

I love homeschooling, but it's not what you think

I love homeschooling, but it's not what you think.

I ran across a post recently about 'reluctant learners' and mothers who subsequently feel like they are failing in homeschooling. I could relate to it. Then it made me wonder if I've been sending the wrong message to the world. 

OK. Not the whole world. But at least the handful of people who are paying attention. 

I don't do it on purpose. But I can see that when I say "I love homeschooling!" and you think Oh but that's because you don't have my kid, or obviously you have more patience than I do, you've gotten the wrong idea. I am not a patient person. I just love my son enough to send him to his room for his own safety when I've reached my limit. And I'm supplied with whiskey. And no, I don't have your kid, but I have mine and that's more than enough. 

I don't really love fighting him to get to the table and fighting him for every page that I know he could finish in 5 minutes but we have to go through a half hour of drama first. I don't love the drama. 

A little note about me: I hate, hate, hate whining. Aside from all the little buttons it pushes in me, I watch the clock and think 'so much time wasted on this DRAMA!' Hey, I have other things I could be doing as well. I often think about all that I could be accomplishing for myself if he was in "real" school. I just finished my first novel. I did it on the weekends, while he was away at his dad's house. I daydream about all the books I could write, the cleaning I could get done, the relaxing I could be doing. I don't homeschool because I have no other life-goals for myself. 

But these are fleeting thoughts. In reality I am assured - by many, many reasons that I'm not going to list here - that this is the right thing to do for him. Motherhood isn't about me and neither is my decision to homeschool. 

Not just in spite of all of the struggle, but partly because of it, I love what I do. He challenges me in ways that another human wouldn't be allowed to. He challenges my intellect with his insightful and philosophical questions. He challenges my creativity - how can I teach him this concept in a more interesting way?  He challenges my life philosophies - why do we do what we do? How can we look at things differently? He challenges my patience and sense of self - why does this bug me so much, and how can I be a better person? 

I don't enjoy being constantly challenged. It's exhausting. But I need to be challenged. 

More than anything, however, is that when all the drama is finished, my struggling learner has learned something new at the end of the day. He does this in spite of himself. I understand him. Part of the fighting is because he lacks confidence. Every accomplishment adds another piece of confidence back to himself. He goes in fighting and walks away smiling, and a little prouder. I listen to him read now and I'm blown away every single time, because every time I flash back to the difficult years it has taken to get my dyslexic child here. His accomplishments are my accomplishments. I think of the research and the articles and the statistics that bemoan the poor academic performances of children with learning disorders and the national question of 'How can we stop failing them?' and know that we are ahead of where he would have been conventionally. 

At the end of the day, what's not to love about that? 

Crosspost from Homeschooling Aspergers

Good reasons to drop that bad advice and DO look back on your life

Excuse me miss, you dropped something: Good reasons for Autism moms to drop that bad advice and look back on your life

"I used to enjoy cooking."

Homecooked meals at my parents' home

That thought came to me suddenly one day. I was almost surprised at the revelation. It's funny how I'd forgotten that, and how much things had changed.

"Why? Why did that change?" As I reflected on it, I could easily pinpoint where that joy had gotten lost in the messy years that followed. There were a few minor things: the fact that my ex didn't like vegetables and I was a vegetarian. That had thrown a bit of a kink into my normal menu plans. But in all honestly that wasn't the major assault to that piece of me. 

When I ask myself when I stopped cooking, I remember one specific day. There were many days like it, but that was the day it broke me. Jaden was at the peak of his food aversions. He'd lost 8 pounds at 3 years old. That's a lot of body weight for a 3 year old. I went to the grocery almost daily, combing the isles for something that he might be able to eat. I say "able" because he tried to eat some things, but he couldn't.

That day the sun was streaming into our apartment and Jaden was playing at the dining room table. I was making homemade macaroni and cheese from a recipe I'd gotten. I tasted a bite. It was delicious. Nothing like the boxed kind. 

Jaden came into the kitchen sniffing the air like a cartoon character following the beckoning scent. 

"That smells so good! Can I have some?" he said (when I translated it from his twisted Autism language.) 

I happily fixed him a bowl and put it in the freezer to cool, while he impatiently twirled and danced on his toes. "I'm so hungry, Mommy!" 

When I took it out of the freezer he followed me dancerly and sat down in front of it. First bite, tentative.

"Mmm, mm!" 

Second bite… then it started. He gagged, then gagged again, then panicked and spit it in his plate. He sat back forlornly and pushed the bowl away. 

"Let's try again," I said almost pleading. 

"I'm not hungry," he replied. 

And I was broken. 

I couldn't even count anymore how many times something I cooked smelled good to him, only to have him gag on it. Then later he gave up, and only eyeballed the food warily and said he wasn't hungry. Then we got to everything smelled awful to him, could I eat it in the other room? 

I felt like I was torturing him. How could I continue to fix meals he loved the smell of but couldn't eat? 

Over time I'd forgotten that I ever cooked, that I cooked often, that I enjoyed it. We live off of sandwiches, microwaved vegetable burgers, and quick meals. 

And really, when I look back, life is all around just different. So much got lost on the cutting room floor when they said "Autism" and our "Autism life" began. 

I know there are a lot of people who will know what that means. 

***** 

After a few years of feeding therapy Jaden can eat new things now. Like me, he also lost something back there and became accustomed to avoidance. But he *can* eat, even if he refuses it, and I *can* cook again, even if I have to work through my own feelings of avoidance to do so. 

What else was lost back there on the cutting floor? 

They say don't look back. I say "they" give a lot of trite advice that's sometimes just plain bad. 

This is my advice: 

Look back. It might be painful, but sometimes you just have to work through the pain and deal to get to something good. 

Get a pen and notebook. Write down everything that used to be YOU. The things you did, what made you the person you were, the things you enjoyed. All the things you considered good. 

Do this even if the diagnosis is new to you. Or especially if it's new, and you're going through the cutting room floor. The hard stuff won't last forever, and one day you're going to have more than 10 minutes on your hands between therapies and you'll want to remember you. 

When you go through this list, you might find things you'll want to cross off again. You might be past the phase where going clubbing or playing poker with friends even tempts you anymore. That's ok. The difference is this time you'll be making the choice to cut it, instead of being forced by circumstances. 

There are some things circumstances will still prevent. Put them in their own list and save it. 

Then there are the things you will remember that you liked about you, and lost, and that you can pick up again. It's difficult to break out of old routines but these things can be put back in slowly. Go buy a cross-stitch pattern or bake a casserole or start a story, or read a book. One that doesn't have the "A" word in it. I know for some of you it's been a long time. 

What did you lose back there? 

Baseball & Ballet

After a brief hiatus (ok long) from extracurricular activities, we've thrown ourselves into the Spring mix again with ballet and baseball. Our hopes for ballet is that it will help him get more in touch with his body (OT) and because it's good for him to have some discipline with following directions and peers (speech, ABA and socializing.)

I just don't think I'm ever going to think in 'normal' terms again. 

This is also our first drop-off situation. Well, to me but not to him. We dropped him off at the Brown Center but then I'd go in and watch from the monitors. No monitors here. Jaden however is so used to being observed by camera that he thinks it's natural. 

I ask him about what he does in ballet, because I have no idea. He likes to answer with one or two word sentences, which I patiently try to stretch into at least 3 or 4. 

"If you want to know what we're doing, why don't you just watch from the monitors next time?" he said last week. 

"They don't have monitors at ballet," I answered. "So I can't see you at all. I have no idea what sort of things you do, and I'm just curious." 

"No monitors?" He looked at me baffled. 

I wonder again what life is like inside his head. 

"We had to do our legs like a diamond, but I wasn't very good at it." 

"How do you know?" 

"The teacher came and straightened me up."

"Did she fuss at you?" I wondered, because he seemed unhappy. 

"Why would she do that??" he answered in an offended tone. "She's a nice lady." 

It comforts me to know that she's such a "nice lady" that even to question her offends Jaden. I nervously had taken some advice to not mention to them that he has Autism. After meeting his teacher, though very briefly, I got the impression it wouldn't have mattered. She expects her students to listen to her and that's all. I'm ok with that. 

I also didn't tell his baseball coaches. Not yet anyway. Unless it's someone's job to work with Autism, I've found it doesn't do much but cause awkwardness. I can imagine they'd just look at him differently like "What am I supposed to do with that? Should I treat him differently?" 

No, please don't treat him differently. He needs to learn to pay attention and follow directions the same as the other kids. 

So then, what's the point of mentioning it? 

The coaches are patient and they're pros at teaching the kids. And unlike soccer where most of the kids had apparently been on the field since they were 2, all Jaden's teammates seemed to be just as awkward and confused as he was. 

Yes, this makes me happy. Just once in a while we need a level playing field and this might be it. 

He did space out some from all the stimuli, and it was difficult for me to see it. At home he's so engaged now. So it meant that the coach would call his name about 5 times until his dad or I got his attention, and that happened several times. But once he would realize he was being spoken to again, he did good. 

I think a lot of Autism moms will understand when I say I am hopeful, and it's a big deal that this goes well. If you were reading my blog last Spring you'll know that soccer did not go well. He gets discouraged easily and that only served to make it worse. He needs something he's good at, that will show him that work and practice can pay off. 

He objected to going to practice again tonight, but I sent him off with his dad with what I hoped were inspiring words. Whether or not it helped, he called me on his way home, though he doesn't usually like to talk on the phone. 

"Mom, I did great!" 

He then proceeded to describe to me, without prompting, everything he had done. There was pride and excitement in his voice. 

That's a home run. 

Homeschooling ASD: joy and patience

I waded into Jaden's toy strewn room, unable to find a clear path. I told him to clean it earlier, and he said he did. 

"Jaden, this is what you call a clean room?" I asked incredulously. 

"I'm sorry, Mom," he replied. "My room looked clean to me. It's because my brain thinks different from yours." 

Aww, baby's first time using Autism as an excuse. I called bull***.  Sorry son, not this time.

We're doing well. Oh I mean we still have our moments where I'm supposed to have the patience of an angel and --- sometimes I don't. 

It's important to try my best as a parent, but I know that somewhere along the line I'll always fail. Like any parent.* I think it's also important to apologize to him when I screw up. Children see their parents as some kind of God-figure, if even if we're being wrong and unreasonable. I mean, they do know that we're being unreasonable, but the greater part of them is saying that we are unreasonable because there's something wrong with them. If I screw up, and I do, I tell him so and apologize. 

*Unless you're Caillou's parents, who never get upset, lose their patience, or raise their voice to more than the joyful twitter of a nightingale. But Jaden likes the show, so I must insert my earbuds and try to endure without growling and mocking them, because he hates it when I do that… 

But we've both been out of sorts lately. Just when I think I've found a good balance with him, it goes awry. Patience is worn thin in this household, and his temper flares up like a forest fire over the slightest thing. I wonder if the seasonal allergies have us wonky. Almost worse to me is how terrible he feels about himself afterwards for losing it. 

I think it's partly because school's "in session." He's very hard on himself, and I spend a lot of time trying to get him to be nicer to himself. There's no one to keep up with and there are no tests to fail. But the smallest mistake can send him over the edge.  

So I'm still trying to find our rhythm. I've read in several places that it can take a good year, so to consider the first year practice. I'll take this as gospel since I don't feel completely stabilized yet. I'm really enjoying it though, and - though the word "school" causes a biological reaction in children that is instinctual, much how like a field mouse knows to run away from a hawk's shadow - Jaden is enjoying it more than he'll admit. Any simple craft is a big hit.  He evens asks to do certain "school" things in the evening, for fun. And since I have a sick obsession with researching everything then attempting to compile it, of course lately it's been all things homeschooling. This time there is way too much of it - too many brilliant ideas, cute crafts, and free worksheets and printables everywhere - and I have to stop myself often. If I can't get it under control I might have to go into rehab. 

But I am also fully faced with the… discrepancies in Jaden's learning. Autism, SPD, and Executive Dysfunction are loudly prevalent. My personalized and pieced together curriculum ranges from preschool work to second grade. I've advanced him in some areas, only to have to fall back again to the beginning. His skills and comprehension are all over the place. Which is why I'm more glad I'm able to do this for him. But if ever I had a doubt of his intelligence (and I did, at times) they've been completely laid to rest in the last 6 months. 

Now, God give me more patience. 

Delusions of grandeur and paved roads

When Jaden was discharged from all of his therapies a few months ago, I had some delusions. I have to face it now. There is probably in every mother of a child with Autism a buried fantasy of *when it all goes away* - the war we fight for our children's future - the point when we can breathe a sigh of relief that he/she can talk/walk/read/write/take care of their own needs/has stopped violently raging and won't end up in jail/fill in the many blanks here, and we can skip through life blissfully like, well like a typical family. Where the mountains end and there is a road under our feet. Paved at that. 

OK. For a second I thought I was there. On that road. Before that moment I wasn't even aware that this is what I've been waiting, or at least hoping for. Like I said, buried. Under all that day to day junk that blocks our visions of tomorrow. 

When we learned that Jaden had special needs I threw myself into a year and a half of research that would rival a PHD hopeful. 10-12 hour days were not uncommon. The day I realized my son has Autism I stopped sleeping, almost completely. When my research led to a well-formulated plan, and when I was able to let the experts at The Brown Center take over the heavy work, I had reached critical burnout. The research efforts dwindled to a trickle. I knew what I needed to know. Not everything, but what I needed for Jaden. I still observed their every move through the monitors and participated in the classroom occasionally, and went to their parent training. I did the stuff at home that I needed to. My goals were immediate; Learn to talk, learn to understand speech. Hold a pencil and learn to draw and write. Hold a utensil and self-feed. EAT. Walk without falling over his feet (ok this is still an issue.) Self-care age appropriately. In other words, get him to the level of his typical peers developmentally. 

It was like I was trudging along the line of our goals with my head down until suddenly I was told I'd arrived. What? Arrived where? "Jaden tested in the 'normal' range for everything." He's done. Hallelujah! 

That's when I became delusional. I was looking at "developmentally appropriate" and thinking hell, we're on that paved road now. 

     underwater photography

I'm going to make a confession. I was wanting to leave the "A" word behind. I didn't want to think about it anymore. Being forced into this world was like learning to drown. Eventually I had forgotten all about that "other world" I used to live in before I was forced kicking and screaming to this realm. But now - now I can leave, right? We can go home and pretend the last few years never happened. Oh yeah, I wanted that. To all my fellow Autism parents; I wanted to leave you. 

My delusion was short-lived. Oh I knew he still "had Autism." (Not to get into the great debate, but) I don't really think Autism is something you can, or maybe even should, cure. The brain can be trained to learn new ways to cope with life, but it will never be the same as being born typical. It's just different. Even then, I entertained the notion that I could be wrong. "He's doing so well, isn't he?" 

My dear self: developmentally appropriate does not mean not Autistic. 

We have a lot of recovery. We still have Autism. It insisted on being near his classmates in camp then kept him isolated from connecting with them. It tried to escape the house several times, climbing on chairs and studying the extra door locks in an attempt to circumvent them. It melted down at the mention of door alarms (because that's now next.) It screamed at me, hit me, and bit and tore at my clothes with it's teeth in the convenience store. It raged at me for days on and off between sweet and loving. It wrapped it's arms around my neck then shoved it's thumb into my windpipe in anger. I looked at him and said "I don't get it. You're SO SMART. Why can't you understand how inappropriate this is? Why can't you see that it will get you the opposite of what you're screaming for?" Why doesn't he understand why he can't wander off through the neighborhood or anywhere he wants to by himself? Why can't he remember to use his words? Why isn't he trying to negotiate with me, like my little sister used to with my dad? Why can't he see that I'm a sucker for him and know if he played his very good cards right his life would be - easy? 

Because he has Autism. It's not over, it's just different. I prepared, I worked, and now we've gone on to phase two. I was told that we would go on to meet new challenges but I didn't hear it. He can use a pencil and have a conversation with me now, damn it. So we have the older, brilliant Autistic child who has been rediagnosed with Aspergers, and I haven't even really researched this part yet.   

Paved roads are overrated anyway, right?

Graduation Day

My very hard working little Jade has graduated from all of his therapies. May 3rd was his last day at BCA! :) 

First day of school

Typical people, it’s time to start pulling your weight

Years of therapy - speech therapy, occupational therapy, behavior therapy, and social skills. My 5 year old has worked his butt off to learn how to understand and relate to the typical world. What a smile means, what a frown means, what sarcasm is and why people don’t say what they mean and mean what they say. Don’t hug, don’t touch, don’t stand too close because it makes the typicals uncomfortable. We still haven’t got that down. Typical kids jump away like they’ve never had affection at home. Sometimes I feel sorry for them.

He. Tries. SO. Hard. He doesn’t get it right. The kids are mean. He wants to give up. He echoes lines from his superhero cartoons “That kid is NOT my bro.” He sobs in my lap for a half hour because I won’t let him quit soccer this time.

And I think, it’s not fair really. He was born behind the curve in understanding an illogical world. Meanwhile those for whom learning comes easy breeze through with a scorn and a laugh, some flippant remarks, adults who think we all “take it too seriously” when every day that we go out in public is a war. A war to keep my child from sinking into self-hatred and killing himself. Too dramatic again? Uh oh, better run back to your pintrest and desperate housewives, because today I’m keeping it real.

See, words and attitudes do hurt, even for a child who might not have the finest grasp on words. What he understands less is why he’s an automatic outcast. He takes it out on himself, not knowing how he’s messing it up, but knowing that he is.

My five year old said he hates himself and wants to kill himself. Several times.

At first I reacted by saying I hate Autism. But I don’t. I hate typical. Typical, self-important, entitled yahoos to whom life hands apples and they make quips about what to do when you get lemons.

The week I was dealing with a suicidal five year old, rejection on the playground, new soccer kids in new soccer team who scorn and push and play better, meltdowns in public and sobfests in my arms; that same week I am confronted by an internet post that mocked parents who have screaming kids in target. Bring on the inevitable tidal wave of public opinion and vicious posts about bad parents and rotten kids. I wasn’t mad, yet. I know people are ignorant (though it’s 2012 and the information age, for God’s sake.) I'm always more hurt for Jaden than offended for me, because people think of him that way. Kids do pick up on those attitudes, yes even kids with disabilities. I insert a small PSA about special needs kids and thinking before you bitch, and get the slap down because life is rainbows and I should learn to laugh about it more. “We all have problems.” Yep, I can remember the time I had to choose which coffee to make in the morning and trying to make it home from work in time to watch my favorite show. God, life was rough.

I do laugh at myself, my problems, my issues and my screw-ups. I make jokes about it all the time. Humor and finding the joy in my life, or at least the sarcasm, is part of what holds me together. My husband left me? I have jokes for that. Don’t have a job because I’m caring for my son? Sure, poor humor is rich. You put down my son (or incite others to do the same)? I will tear your fucking eyes out. Fair enough? Some things. Aren’t. Funny.

Jaden is about to complete his 3^rd year of therapy. All that to relate to the typical world, and because that’s what he wants to do, not because I give a damn about him looking like a “real boy.” And he’s doing amazing, just absolutely amazing and I’m proud of him and the hard work he’s done. He’s doing great until he’s around typical kids who see different a mile away no matter how much therapy it’s had.

How much time have you invested in your kids, or even yourself, to be able to relate to children/people/families with special needs? If a child with special needs is behind already, and your honor roll kids are so smart, why is it so hard for them to learn how to meet a child with Autism half way instead of making that kid do all the work to get up to their standards? Instead of handing out donations at the supermarket and thinking you did something special, why don’t you spend some time teaching your kids what special really is, why different doesn’t mean bad, and how to be a friend?  We’ve invested 3 years and counting. You can match that with at least a few days.

A child having a meltdown at the supermarket doesn’t offend me, by the way, but a mean-spirited child sure does. I blame the parents.

The Nature of Boys - vs Nurture

Before I had kids I thought I knew so much. I believed in nurture’s superiority to nature. I thought that boys must gravitate towards “boy things” more because they were told that’s what boys like. As any mother with sons could have told me - if they could have gotten the words out through their laughter - that is just not the way it is. I admit the deeply embedded “I love cars” gene has my scientific mind baffled, considering there were no cars up until 150ish years ago. (I’m not looking up when cars were actually invented, as a woman I really don’t care.)

It’s apparent that other things are also buried deep within the male DNA. When I had to explain to Jaden some of the subtle difference between our *ahem* parts, and it finally dawned on him that mommy didn’t have an “outie,” his reply was “Oh… I’m sorry Mommy!”

At four years old he was already convinced of the superiority of a peepee.

My son is surrounded by estrogen. All of his teachers/therapists are female, the director at his school is a woman, and I’m his primary caregiver. Meaning I’m the boss. Jaden’s dad, while having some of the all-to-normal subtle forms of the belief in male superiority, isn’t one to spout off a chauvinistic remark. So imagine our surprise when during a casual conversation about office politics, Jaden cried out “Dad, your boss is a woman?! You can’t have a woman for a boss!”

I almost, at that point, gave up any hope for the future of the race.

He is, however, very sweet and considerate. He insists on buying me flowers (with my money) whenever we go to the grocery store, is quick to say “Wow, you look beautiful Mommy!” when I come downstairs dressed up, and tells me often that he loves me and what a great mom I am. And I don’t even have to pay him to do it.

So in spite of his little boys-are-better quirks, and the body-gas humor, superhero and supervillian obsessions, and his having to shoot or beat up every bad guy in town, I do think he’ll turn out to be a good and considerate man. With nurture.

Every book is a window

Last night Jaden and I finished reading The Lion, The Witch and The Wardrobe. This wasn’t the first “big book” I’ve read to him but it's the first that we’ve finished. The others were just too far beyond his comprehension, but I thought that The Chronicles of Narnia might be just about right, and they are. He still doesn’t understand even half of what I’m reading, and because of that I’m even more proud of his ability to stick it out and listen anyway. I go back and summarize for him often and we ask each other questions about what we’ve read.

Not to brag (OK maybe a little?) but I’m proud of myself too. It’s nice to see the end results of years of struggle play out well. Jaden is – to put it mildly – not a very attentive child. I first started reading to him when he was maybe 6 months old. You know those little one minute, 3 word books with the little finger puppet in them to hold interest? Yeah I love those. Even then I had to hold Mr. Squirmy down and force him to pay attention, and that went on for a while. This was not something done lightly but a very weighed decision. Yes I’m an attachment parent and part of the “free the children” movement (not really I made that up,) and don’t believe in pushing a child too hard too fast, but maybe even then I sensed this was not some regular phase he’d grow out of but something he had to be taught. I was most successful by reading to him while I was nursing, his favorite thing, and I had my captive audience.

Fast forward years later and I have a child who listens to a story even when he doesn’t understand it. Who begs me to read to him on the nights when I waver and say we stayed up too late and maybe we should skip it. A few weeks ago as I turned off the light he said “Thank you, Mommy.”

“For what?”

“For reading to me,” he said, though I do it every night. And I tucked that moment into my box of treasures.

Reading has been a foundational piece of my life, so I was determined from the start that “this child will be a reader!” How important it was I didn’t even know at the time, before we understood that language in any form was one of his biggest challenges. How much more so essential it is that he will want to read, to listen, to understand. If the love for it is there, he will overcome his obstacles to accomplish it. Because he’s Jaden, and he’s strong-willed and determined to do whatever he sets his mind to do.

So to me, last night was a coup, a shining star in the sky that is opening for Jaden. When we were done I asked “Why do you think the Professor believed their story and didn’t think they were crazy?”

“I don’t know?” he said wondering.

“I think it’s because he’s been to Narnia too.” I looked at Jaden. “Actually I know that’s why, because there’s a book about that too.”

“There’s another book?” he asked, his eyes getting big.

“Yep. There are several books about Narnia. Would you like us to read them all?”

“Yes!” he exclaimed with a smile.

And his world opened up that much more.

Every book is a window

Every word a step

Into unknown territories

And unchartered depths

Every idea, whether

Wrong or right

Opens rooms for thoughts

To shine lights in the night

Education’s a dry thing

But learning abounding

When a child realizes

The world is astounding 

A life may be poor

Even if rich or grand

Without adventures to read

Of some distant land

So you take your gold

And I’ll take my mysteries

Shakespeare and Dickinson

Roman Empire histories

I’ll skip all the drama

and allegory;

The world is too small

Without a good story

Copywrited (In other words, please don't reprint without permission. Thanks!)

A beautiful wedding and tough conversations

My favorite time of day is Jaden’s bedtime. Not because he’s going to be asleep (though I won’t lie, sometimes that’s nice) but because that’s our time. Quite often we read for a while, on rare occasions we hook up the dvd player and watch a few minutes of a movie, and that’s our time to talk about anything that’s on his mind.

One of Jaden’s happiest breakthroughs is that a few months ago we began to have actual conversations. I’ve waited so long to hear what’s going through his head. He started really talking close to a year ago, right after we switched his speech therapy to Vanderbilt Bill Wilkerson. Because of this I’m in love with his speech therapist and think of her as part of our family. But real back and forth conversation took more time and work from all of his team of superheroes, as his receptive language is on a lower level than his expressive language. He struggles to understand us. The first time he told me a sentence in answer to “what happened today?” I had to act casual and turn so he wouldn’t see me tearing up. Way, way bigger than when he took his first steps.

So as soon as he was able, I used bedtime as a safe time to practice and talk to me about whatever was on his mind. It’s easier then, when his thoughts and eyes and body aren’t bouncing all over the room.

Tonight it was sad. I should have seen it coming maybe, when he asked me in the car “Why do people die?” I talked to him a little about it, trying to walk the line between being honest and not scaring him, while we put away groceries. I could tell he was done when he changed the subject himself and breathed a sigh of relief. I hope the birds and bees question waits for a while longer.

Laying in bed though the subject turned to two things I can’t fix for him; bad dreams then  the subject of our divorce. With tears he begged me again to “be married to daddy again,” with “’What a beautiful wedding,’ do you remember that in the song? ” he asked as he sang the lines from Panic! in the Disco’s  I write sins not tragedies. “’What a beautiful wedding,’ be like that. With the cake, and the flowers, and be married.”

I held him while he cried about it, I held him while he begged, I held him while he asked if daddy was going to marry someone else, and I held him while I told him again there wasn’t anything more I could do about any of it.

On second thought can we go back to why people die and the birds and the bees?

(I lol at how sweet that Jaden thinks the video is about a beautiful wedding…
Yes I gave it away - I’m a bad mom. We love our music!)

You’re just going to have to come see for yourself

“Ugh, I can’t explain it. You’re just going to have to come see for yourself.” Words we’ve said or had said to us several times in our lives when explanations fail and nothing but the experience will do.

This is how life should be lived. Not always balanced out in ledgers with pros and cons and risk management but with leaps of faith and “why not’s”.

I think about this now, after reading something once again that tells me that stress for a parent of a child with Autism stays at high alert pretty much forever. OK sure I’m 9 months post-diagnosis and still find myself saying “He wasn’t diagnosed very long ago,” for the mere fact that I feel like I’ve barely processed it yet. But is it too much to let me hope that it gets… easier? Even though I can’t see how right now?

I am however going through a divorce and recovering from various other not-directly-related-but-somewhat-related blows, so I may be a little sensitive to it all right now.

But I’m digressing slightly. Only slightly. The thing is, in times like this, I can’t help but think about my mindset when I decided to have a baby. I was 32, and life before then had been anything but calm and drama-free. I had in my early 20’s been told my chances of getting pregnant were basically nil. So I went through the whole process of grieving and accepting that I wasn’t going to have a child. Later I found I could get pregnant by the fact that I did, then miscarried. Then divorced. And went through a whole different but same process of accepting that being a mom wasn’t going to be in my future. Came to embrace it even. Being child-free meant being free to do other things.

So when I did meet, fall in love, and get married to someone who had a strong preference for having children, I was still on the fence about it. I’d say when it happened I was 60-40 and “If we’re going to do it we might as well do it now.”

It was the way things looked on paper that had me trepidatious. The costs and sacrifices being weighed with the ghost of an idea of loving someone so much they’d be worth the costs and sacrifices. I was never much a of coo-er over babies that didn’t belong to me somehow. I didn’t melt over other people’s children and wish I had one too. I just saw dirty diapers and snotty noses and screaming tantrums.

And these are the things I think of now. What I’d had on that “paper” was nothing – nothing – compared to the true costs and sacrifices. And if I would have known, I would have said NO. No way. Even had the rest been put on paper – his beautiful smiles, witty personality, what it feels like when he says “I love you, Mommy,” - I would have mistrusted myself for the sentimental twit I can be sometimes. No trustworthy message could have come with that price tag that I would have believed “and you’ll find it all worth it.”

I would have said “I think I’ll take option B and take my childless self to Hawaii now, which I may never see with option A.”

I would have never known the person I missed out on, the indescribable thing that goes beyond dirty diapers and snotty noses and germy race-car shopping carts. Beyond high needs and Autism and endless worry. Beyond every sacrifice I’ve made and thing I’ve lost that I would have never believed worth it.

I would have never known what I’d lost and that makes me thank God - THANK GOD that I didn’t know what I was sacrificing. 

The funny thing is, on paper many people would have said to me “If that’s the way you feel, you probably shouldn’t have children.” And it’s true that many probably shouldn’t, and do anyway. But you just never know sometimes what a person’s made of until they get there. Wherever there is for them.

I laugh because I’m only relating my own story and not trying to convince anyone to have children. Though I do think about those who have had abortions because they didn’t think they could pay the price demanded for a special needs child. The ones who did see it on paper. The ones who couldn’t imagine that the thing they sacrificed to preserve their own way of life would have, in just a few months, been the thing they would have gladly died for.

What would I say to someone who's on that fence? “The love, the joy, the anguish; it’s indescribable. It’s like- it’s like… You’re just going to have to come see for yourself. But it’s so worth it.”

I can’t look…

I don’t mind questions about Jaden and Autism; in fact I welcome them. It doesn’t matter if the questions come from the utmost ignorance, as long as the asker’s heart is sincere in wanting to know the answers. It means they care, it means they want to learn.

I also started from the utmost ignorance; television dramas and stereotypes my only education that made me miss what should have been obvious.

One inevitable question, usually asked in halting, apologetic words, is “What about the future?”

This is the question that silences me.

That word has changed for me. Once upon a time to me “the future” invoked a picture of a road stretching out long before us with colorful shadows of might be and possibilities marking milestones.

Now the future is this week. I know what we’re doing this week. We’re going to school four days of the week and going to other therapies on two days. I have waffles and vegetarian chicken nuggets in the freezer, Dominos on speed dial, Lays chips and Chips Ahoy cookies for snack time, because that’s all Jaden will eat. The laundry is done. I’m ready for the future.

But I know that this isn’t what they’re asking. And I can’t say. I can’t even look.

Sometimes I glimpse up, usually unintentionally, and the shadows of “might be” have changed. Hopeful colorful ones are still there but they’re now joined and mixed with scary dark ones. Every time Jaden hits me when he’s mad, the dark ones loom in front of me. Every time he gets distressed and just can’t understand what I’m saying to him, or when I see his neuro-typical peers shun him and break his heart because he doesn’t understand. Or when he gets stressed and loses his words, or starts screaming at strangers to shut up.

I glimpse ugly futures every time I read a story about police mishandling or abusing a person with Autism, because they didn’t understand. Or when I hear about people forced into institutions, or becoming homeless on the streets, or victims of hate crimes, or perpetrators of crimes.

It makes my heart literally hurt, it makes my chest tight, and I look down. I keep my eyes to the ground at my feet.

I can’t look.

It’s not as if I’m ignoring the future. Almost all of my time, energy and money is going towards it. Diligence relaxed would ensure that the colorful shadows die. I’ve found that walking the road seems more like climbing cliffs. I heed the well-worn advice to not look up - or is it don’t look down? Just don’t look. But I’m climbing.

  

I’m reminded often of the scripture “Where there is no vision the people perish.” It is a bit like that. Hope for the future is an essential part of life, even if things don’t turn out as you envisioned them. And I do have a few hopes for myself. I know it’s necessary to be able to keep going. But like every good mother my future is wrapped up in my child’s, and I can't see it.  

I believe in magic...

I’m still at the Brown Center so much they’re probably tired of me by now. I’ve already worn out the average “new parent” jitters time. I don’t have the “jitters” anymore, but I like being there and watching how they do what they do.

When I see it, it all looks like play. But at home it translates into something magical. Jaden is having conversations with me. Actual conversations. There’s still language barriers and misused words, still some drive-me-up-the-wall echolalia. But the gap is closing.

Last year I would have sold everything l had to know what was going on inside of my son’s precious head. His intelligent eyes made it impossible not to believe that whatever he was trying to communicate to me in his completely alien babble was something interesting, poignant, even amazing. And I was missing it.

Harder than my own loss, it was obvious to him that he was unable to communicate. His struggles were a thing of great admiration and heartbreak. He never gave up. In the past year I and many other wonderful people have worked hard to help Jaden achieve what he wanted so badly. But I believe the crux of his success is founded in the fact that he is the most stubborn, strong-willed, ambitious, determined person I’ve ever known. While this makes for some interesting challenges in parenthood, I wouldn’t change him for the world.

But I digress. In truth one of my fears with sending Jaden to ABA based therapy was that I didn’t want them to change him. I didn’t want a little automaton who said and did the right things at the right times like a well-trained dog, and in that losing himself somewhere.

But what’s happening instead is a transformation. It’s like a static television that his therapy team is helping to fine-tune, or a rubiks cube that they gently match the colors in the right place. All the pieces of life were there for him, he just didn’t know how to make it come together in his head.

I watch, I listen, I learn, but to me it still looks like magic. 

Diagnosis: Autism

Autism Hope necklace from Etsy

1 in 70 boys are diagnosed with Autism. As of yesterday, Jaden is one of them.

To say that I was expecting it was true and not at all true. I thought that he was Autistic yet thought that I could be wrong, and that he was too difficult to diagnose, the lines too vague, and that as two times before we would walk out with no diagnosis and more questions than answers.

Diagnosis: Autism That’s what was written on the paper. The whole session is already fuzzy in my head, being recorded in my severely sleep-deprived state. To say that I expected that he had Autism did not make the words less of a blow. My stomach hurt like I’d physically been punched. I made it downstairs with Matt and Jaden, made it to the parking garage. Matt put Jaden in his carseat while I stood there slowly turning to stone, and cried. Matt came around and held me. “He’s still our little boy, he’s still our Jaden. He’s still our little ball of sunshine.” On the way home he told me he had expected it, but “Expecting it didn’t make it easier to hear.” The feelings are complex. Relief and grief. Relief because I suspected, or had come to know. Obviously something was wrong, something that didn’t fit or was more than the diagnosises that we’d been given. Grief because no matter what, it’s a terrible thing to have a diagnosis for. Because, as we told each other on the way home, suspecting wasn’t knowing and until then we had doubts. “In doubt there was hope,” Matt said. Exactly. Hope that we were wrong, that it was something else, something elusive that would be grown out of. But Autism. A lifelong diagnosis of struggle and confusion. Last night I finally slept. I don’t know how many days or weeks have passed since the last time I slept more than 4 hours in a night. No, not a night, that’s the problem. I could feel myself degrading yet the sleepiness eluded me. Just me wired up and unable to sleep until 7, 8, 9 in the morning. I felt practically useless at the assessment yesterday, my words staggering and me speaking what I knew were unclear, half sentences. But last night I slept.