Parenting Up to Ability, Not Parenting Down to Autism

I have two sons. One is neuro-typical, though legally blind, and the other is autistic. As a single mother who works from home, I have both of my children all of the time. It can be a bit of a juggling act, holding the autistic child back while encouraging the typical child to inch forward, but it wasn't until I spent an entire day with just my typical son that I realized I was doing it wrong.

One day I found myself taking one child to the doctor while the other went to school. My typical child, Tristan, had to go to the ophthalmologist, but there was no reason for my autistic son to tag along, so off to school he went. My older son, the typical child, was quite happy to spend a day just with Mommy, even if it involved a doctor, so off we went. The doctor didn't take long, so we decided on the zoo as something to kill two hours before we had to pick up his brother.

We'd been to the zoo many times before, but this was different. Always, when I had both kids, we had to be careful. Mustn't go near the seals or the little one would have a meltdown. Avoid the play structure area because it's too scary. And don't walk in the sand. Do NOT walk in the sand.

This time, however, there was an immediate difference. We didn't avoid certain areas. Tristan could wander where he would and I trotted calmly behind. He was free to explore without having me call him back because his brother couldn't cope.

And then it hit me. I was parenting down, satisfying the lowest common denominator, instead of requiring more of us all. I felt it was just more fair to say no rather than allow Tristan to do something while I was forced to keep his little brother back, possibly while having a little meltdown over whatever big brother was doing. Now, to be clear, Tristan had never once complained when I had to say no, or felt I had to say no. He's an easygoing child, one who adapts to what's thrown his way. But that didn't make it right.

I watched him at the zoo, watched his little personality bubble forth without needing to be held back, and I realized I wanted my younger son to have that experience too.

That's when I knew I'd been guilty of the same mistake parents of special needs kids have been making since the beginning of time. I was parenting to the disability, to the disorder, and not to my son. He is autistic, but he is not autism. Autism is a part of our lives, but it cannot be our whole life. If I constantly parented down, catering to the lowest common denominator, I was doing everyone a disservice.

Especially my older son. Sometimes it is all too easy to focus on the child with the most severe disability, to get tunnel vision. And we, all of us, too frequently use autism, or any special need, as an excuse. It's the reason a child doesn't go to parties. It's the reason we didn't take the family to the movies last weekend. It's the reason we didn't go camping last summer. And in catering to this, we're stifling the potential of all our children, not just the special needs children.

Autism is scary and sometimes unpredictable and frustrating (why won't you eat white foods!), and it can be difficult to not focus on it all of the time. But I knew, for the sake of my small family, that I had to try. I had to stop parenting down, and start parenting up. I had to get rid of the lowest common denominator altogether. I had to expect more of everyone, including myself and my autistic son. If I could do that, all of us, perhaps especially my older child, would have a better life.

It didn't happen overnight. As anyone with an autistic child will understand, you don't just toss him onto the terrifying sand and expect miracles. The process involved a lot of coaxing, a lot of patience, and pure stubbornness on my part. We were going on that sand. Maybe not on day one, but definitely by day three. And day four meant we were visiting the seals. My little one didn't have to like it, but Tristan loved the seals and it was about time everyone got to see what they wanted. Autism or no autism.

Yes, we spent every single day at that zoo. Then we hit the playground to repeat the entire process with the rope bridge. Again, he didn't have to walk across the rope bridge himself. He just had to not have a total meltdown when his brother ran across it. Not too much to ask.

I no longer allow the, "Your brother doesn't want to," or the, "Your brother can't do that," to be a reason for not doing something. We even went to a movie as a family, and that's not something my little one likes at all. Too much of everything going on in there. But...too bad. One movie won't kill him, and we did something he wanted to do right after. Yes, it was hard. Yes, it would have been easier not to. But easier is not right.

Tristan, my older son, matters just as much as my little one. He is a whole child all on his own, a whole person with thoughts and feelings that count. He is one half of all the children I'm ever going to have. He needs to take center stage a full half of the time.

That was more than two years ago now, and autism is still with us. There is no cure and my little one will never love the sand. He'll also never truly enjoy going to a movie. But he copes. He copes for his brother. He copes for me. And he copes for himself.

He is only one half of my children, after all. The other half deserves the freedom and joy he now experiences every day.

Redecorating: The Dreaded Hardware Store

When you're redecorating, and when you decide to involve kids in the process, it can seem like it never ends. Never. We'd finally reached the point in our Great Bedroom Saga where we could actually go to the hardware store. The planning was done. The room was clean and vacuumed (and I deserve a reward for getting my 9-year-old to vacuum without bribing or yelling). So naturally, I was off to the hardware store. With 2 kids in tow. That's surely not a recipe for disaster.

First stop: The Paint Department. That's where the fun always begins. Because how can you do anything if you don't know what colors are going on the walls? I had already decided that we'd use that 2-in-1 paint. You know that one that is paint and primer in one? I've used it before, and it's the absolute best. But you have to go with a good brand, like Behr. Yes, it's a little more expensive, but remember you're not buying primer.

So I know exactly what I'm getting. Just have to pick the color. Easy, yes? Not so much actually. First I have to get the kids to pick from the right section. I yelled, "That's OUTSIDE paint!" and, "That paint will drive Mommy crazy!" a few more times than I intended. I seriously thought about hot gluing them to the floor in front of the paint chips I needed them to pick from. And they have hot glue in store. And staple guns. How handy...

No, I didn't go get the glue. Or the staple gun. Instead I trapped them there and told them to pick. This should have been easy since they'd already decided on silver. But there were 10 different silvers and 2 boys. Did they pick the same one? Of course not. That would have made my life easier. So now we have two colors that honestly looked exactly the same to me (did I mention that I have just a touch of color-blindness?). So how to pick? I made it easy and lied. We needed 2 cans, I told them we'd get one of each. Then I get the one with 'silver' in the name (it was French Silver, if you're interested) and called it done. Also needed a deep brown (for painting the beds and shelves and other stuff), but I'd picked one out while they were arguing and said that one was Mommy's choice.

Were we done? Of course not. Now we needed paintbrushes and rollers. Do you think kids can pick these things quickly? Nope. They spent 45 minutes trying every single paintbrush in the store before they found ones they liked. We'd now been in the hardware store for well over an hour, our paint was still mixing, and we weren't done yet. Off to electrical and lights, which were luckily right next to each other.

Just as luckily, we only needed a faceplate for the light switch and a tiny extension cord (for that dragon light they'd insisted I order) from electrical. The faceplate had to be white, and there were only four options, but it still took 15 minutes to pick. We were now approaching the 2-hour mark and our cart was still depressingly empty. Paintbrushes, a faceplate, and an extension cord. Sigh. Now for lighting.

Now, it's important to note that the light in the kids' room is on the wall. On the wall. Let me repeat, on the wall. The light we choose, therefore, had to be on the wall. The wall. I even pointed this out to the kids and directed them towards the display of lights that go ON THE WALL. What do they do? For the first time they agree on something, but it's a chandelier. I refuse to buy it because it WILL NOT FIT. Crying ensues. They want the chandelier. Sales man, against what I'm sure is his better judgment, comes over, looking a little scared.

But he had a solution! They had just received a wall sconce that was pretty much a wall version of that chandelier. It wasn't even on the floor yet, but they had one. He went to get it, kids are dancing, I could have kissed him. I didn't due to the wedding ring on his finger, but I could have. Now back to the paint department.

And the kids have changed their mind. Not silver. Gray. So I tell them it's actually gray, and I'm so smart I knew they wanted gray (it was still French Silver with a high gloss finish). For some reason (possible a miracle sent by the gods), the actually believe me.

Now for the checkout. I just spent $560 because that light was so expensive. It's a light! And the kids want to add chocolate bars. More than one. And a couple drinks. What kind of hardware store has chocolate bars and drink? But I'm so tired I don't even care. $579 dollars now.

In the car, heading home, and I'm so tired I don't even care. We're not painting today. Cry all you want kiddos, painting will have to wait until tomorrow. Mommy needs a nap.

Redecorating: The Great Clean Up

So the kids want to redecorate? No problem. Huge plans? No problem. As soon as the room is clean.

Which is exactly where the first problem in the Great Bedroom Saga was waiting for me. We have one basic rule in our house: your room is your room. I don't care if it's messy. I don't care if you don't put your clothes away. I don't care if you haven't made your bed. As long as the room doesn't smell like a dried up fish stick and your don't leave your junk lying around the rest of the house, I can live with a messy room.

Until it's time to redecorate. I am not even going to try to redecorate a room with Lego strewn across the floor. Have you ever stepped on a Lego? I have and it hurts. So if there's Lego (or one of the many other little toys they seem to keep on the floor) lying around, I'm not painting. Ever.

Bear in mind that this whole redecorating thing wasn't exactly my idea. The kids came up with the plan. So I figured it was only fair that they get their own junk off the floor before I bought the first can of paint. Good idea.

Or so I thought. Who knew it would be such a battle? And, just to set the record straight, the room isn't exactly a total disaster. Some things are on the floor, yes, but most of it is in toy boxes or up on shelves. Cleaning up the entire room would take no more than about fifteen or twenty minutes. Tops.

So what do the kids do? Nothing, as it turns out. I send them to clean their room, promising a trip to the hardware store just as soon as it's done. Ten minutes later, the kids return and ask to go to the hardware store. That seemed just a little quick to me, so I decided to check. They hadn't even picked up the dreaded Lego. No hardware store.

My youngest, who has Asperger's, had an immediate breakdown. He wanted the hardware store, he expected the hardware store, and he was going to have a meltdown (which looks like a tantrum but actually isn't) until we went to the hardware store. My oldest son, who had apparently planned this out, was just about smirking. He had to go to his not-cleaned room while I dealt with the little one.

Eventually, by repeating myself at least a dozen times, I managed to get the little one to understand the sequence of events according to Mommy. Clean up, then hardware store. Clean up, then hardware store. Little one was on board. Now for the big one.

The big one, at a whole eight years old, was not interested in cleaning.

"Why can't you clean it up?" was his big question.

"Fine," I replied. "But Mommy cleans with a garbage bag. I'm going to get my garbage bag. Anything left on the floor is definitely garbage. I'll be back in two minutes."

Usually my threats are pretty empty, but I think he realized that I just might be serious. By the time I got back, garbage bag in hand, Tristan (my older son) was slowly cleaning up. Slowly, but it was a start. The younger one was sitting next to the bunk beds looking confused. A few minutes of careful coaching and Rowan too was cleaning up. Sort of. But it was good enough.

I helped, of course, and thirty minutes later we were ready for a trip to the hardware store. Doesn't that sound like fun?

Redecorating: The Great Bedroom Saga Begins

Have you ever made a promise to your kids that got you in way over your head? Well, that happened to me this week, and it all started because two little boys wanted just one little thing from me.

First, a little background. My two children, now 8 and 6, share a room. They've shared that room for six years. Before that, it was my nephew's room, but then we all played musical houses (that's a different and entirely ridiculous story) and now my kids have the room my nephew once had. The room has a blue ceiling, blue and grey walls, and clouds cut out of ceiling tiles hanging from the ceiling. It also has a Disney's Cars light switch. All of this was from when it was my nephew's room. The only things I added were a few Diego wall decals and a Thomas the Tank Engine toy box. Six years ago. The room hasn't changed since them.

So maybe the situation I've found myself in was bound to creep up on me. And it may be partially my own fault for not updating their room as they grew. They're not toddlers anymore, after all. But I digress.

A few days ago my oldest son Tristan sat beside me and said, "Mommy, you need to paint my room."

That seemed an innocent enough request, so I asked him what color he wanted it painted. Tristan pulled out a paint chip (where did he get a paint chip?!) and showed me a silver paint that would look lovely but would never go over the deeply insane blue on the walls and ceiling now. I asked if he couldn't pick a slightly darker color. He refused. Fine. Silver walls it was. I'd need tinted primer go cover all that blue, but it was fine. Paint is no big deal.

Tristan went on to explain that if he was going to be a knight, he needed grey walls because castle stones are grey. I remember thinking "How cute" as he talked about being a knight. He has all the costumes and two years ago my father and I built him a castle in the yard to play in.

Rowan, my younger son, snuck in and said, "Did you ask her yet?"

Tristan shook his head, so now I was suspicious. He'd already asked me about paint, and I'd agreed, so what hadn't he asked me. I gave Tristan a look. He smiled. I gave Rowan a look. He ran back upstairs.  So I turned back to Tristan.

"What's going on?"

With a heartfelt sigh that shook his little body he explained. He wanted a knight's bedroom. With grey walls and one stone wall and a cool bed and everything. He didn't like Cars and he didn't like Diego. At all. He and Rowan were old enough now to get a bedroom they loved. Thinking paint and wallpaper would do it, I agreed. Then he asked if he could use my computer. In a flash of blind stupidity (and not seeing the connection), I agreed.

So I made dinner and Tristan, at a whole 8 years old, clicked away. To my growing misfortune, I'm coming to realize that the school is teaching my kids to spell and surf the web. This is a dangerous combination. If Tristan couldn't spell, he couldn't use Google and my life would be easier. Well, he can spell and they taught him all about Google. And they taught him how to save pictures from the Internet. This was about to ruin my day.

So I'm making hide-the-beans burgers and cinnamon sweet potato fries and Tristan starts printing something. Who taught the kid to print!? Not me, that's for sure. Into the kitchen he comes with a STACK of paper. My heart clenched as I realized this kid had a PLAN.

What was the plan? A stone wall. Not wallpaper, but real stone. I managed to convince him to use wallpaper because he'd lose a foot of his room with real stone, but it was a near thing. He also wanted to get rid of the bunk bed and have two separate beds. He'd found three pictures on the internet that he wanted to combine. Scary. Oh, and fake windows behind each bed. And castles rising above each bed (he didn't have a picture for this, but he is a little artist). Oh, and THREE nightstands. And treasure chests at the end of the beds. And the beds...navy with a silver stripe. With a crest. And reversible, so silver with a navy stripe on the other side. Still with a crest. Matching curtains around the beds, and these curtains have to hang from the castles rising above the beds.

His plan involves a little more than just paint and wallpaper. It involves new lights (including a dragon light), new switches, new beds, bedding, shelves that look like castles, castles that rise up above beds, curtains, chains, murals, fake windows, and I can't even remember what else. And what did I say when he thrust all these papers and plans at me?

I said, "Yes." What did I just get myself into? Stay tuned for the answer.

Breastfeeding: When Not To Breastfeed

Well, this is the first post of my newest blog, this one devoted to child care, health, raising children in his hectic world, and just plain fun. But what to talk about in my first post? I could post an article about child heath, or maybe one about the stags of pregnancy. Or perhaps you'd prefer an article about children going back to school after a long summer (as one of my own children is about to do on Wednesday). That one would make sense. Most of us parents have kids returning to school.

Well, I'll get to all these things in time. But, since is the first post, I thought I'd go back to the beginning. Not the pregnancy. You don't want to hear about that yet. Trust me. Instead, I'll go back to the days after the birth of my oldest son and deal with one of the major issues facing new mothers: breastfeeding. I'm not going to talk about statistics or techniques, or how good breastfeeding is for a newborn baby (I'll get there in later posts). Instead, I'll relate my own experience and hopefully help some new moms out there.

I was barely 24 years old when my oldest son Tristan was born. Because of complications during the birth, I didn't even see my new baby until almost a day after he was born. That's when I first tried breastfeeding. The nurses encouraged me, but it still hurt. I had been expecting some pain, but not that kind of pain. Tristan didn't latch well. Even with help from the nurses and a lady from the breastfeeding clinic, it was still painful and awkward. But I gave it a go. I didn't complain, and three days later I was on my way home.

Things didn't go any better at home (or rather, at my parents' house where I was staying for the first couple weeks). Tristan cried and was hungry, so I fed him ever two hours. Sometimes every hour, day and night. I wasn't getting any sleep at all and I was in pain. Still, I kept trying. Eventually this had to get easier. Didn't it?

Now, our area has a program where a public health nurse who specializes in babies and new mothers comes to visit. She arrived when Tristan was 5 days old and my little baby was losing weight even to my inexperienced eyes. I told her that I was concerned about breastfeeding, and not only because of Tristan. At this point, I was bleeding. And I don't mean a drop here or there. I mean I had to keep pads in my bra to keep the blood from soaking through my shirt. On both sides. There's no way this could be normal.

But the nurse assured me things would get better. I asked her about formula. She gave me the "breast milk is better" speech. I persisted, she made me feel like the worst mother in the world for not wanting to feed my baby. I told her I didn't think he was getting much milk anyway because I just didn't seem to be producing anything. She told me that was nonsense, but she promised to stop in the next day to see how we were doing.

By the next day, nothing had changed. Except Tristan was crying almost constantly. The nurse arrived and I repeated all my concerns about my little boy. He couldn't possibly be getting enough milk from me despite all the breastfeeding I was doing and all the pain I was in. There was now orange urine in his diaper. I was getting scared but the nurse assured me he was fine and I should just keep it up. When I pestered her, she finally said that I could supplement with an ounce of milk in the morning and the evening if I wanted to, but breast milk was still better. Then she left, promising to return the next day even though the next day was Saturday. She was supposed to be an expert. I trusted her.

By 5pm, I was agitated and I didn't know why. I paced and rocked my crying baby and knew something wasn't right. By 8pm, a little alarm bell started to go off in my head. Tristan didn't look any different, but something was wrong. Seriously wrong. I told my mother he needed to see a doctor and, being the mother of 4 children herself, she knew better than to question a mother's instinct. She bundled me and my small baby into the car and drove us to the nearest emergency room. My parents lived in the country, so it was a rural hospital.

We saw a doctor immediately. A heel stick later the doctor said the bilirubin count was far too high and sent us rushing to The Children's Hospital in the city. Tristan didn't look ill. He didn't even look a little bit yellowed. But something was wrong enough that the rural doctor knew she was out of her depth. The doctors there were waiting for us at The Children's Hospital, and now Tristan looked yellow. This was less than an hour after we left the rural hospital. Things were taking a turn for the worst and Tristan was admitted to the NICU.

He was severely dehydrated and the doctor would tell me later that if I'd waited until morning, he'd have been past the point where they could have saved him. At that moment, they were too busy saving him to talk to me. Besides, when the nurses realized that I was bleeding (I had at this point bled through my shirt), they took me off to bandage me up. The public health nurse who had ignored all the signs and kept telling me to breastfeed when I obviously couldn't was fired Monday morning.

Tristan recovered and I had a long conversation with my doctor and the pediatrician. I was racked with guilt even though they did their best to convince me that none of  it was my fault and that I'd done the right thing by trusting my instincts and rushing to the hospital when I did. But that really wasn't where my guilt was coming from. Being an inexperienced mother, I'd listened to an "expert" and tried to do the right thing. There's no guilt in that and I knew it.

My guilt was about something else entirely. I kept thinking that only a terribly unfit mother wouldn't be able to feed her own child. That's what mothers do, after all. We're equipped for it. Shouldn't I be able to feed my own baby?

When the pediatrician realized this, he said something that I will never forget: "Wet nurses have been around forever and formula was invented to save babies' lives." I'll never forget those words. They made me realize that there have always been women who couldn't breastfeed for whatever reason. It happens. Not all the time or our species would never have made its way past infancy, but it does happen. Not unnatural, but something that just is.

What did I learn from all this? Two things, really. First, not all women can breastfeed and there's no shame in admitting it and using formula. Second, and this one is very important, I learned that a mother, even a new mother, should always trust her instincts. Tristan didn't look any worse at 8pm Friday than he had at 8am Friday. But something forced me to take him to the hospital, and that something saved my son's life.

That's all for this week. Look forward to more posts, though I won't do too many personal stories if I can help it. Next week: back to schook tips for parents sending their little one to grade one. Help your little one adjust to full-time school.