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. 

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.

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.”