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? 

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.