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.  

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? 

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?

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.

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.