- That when someone gives your child a book and isn't sure if they'll like it, you think, "It's OK, really. They all taste the same." But you don't say it because it would freak them out.
- That when your autism support group decides to hold a social activity for children so they can feel included for once, then plans something that's only appropriate for kids older than yours, you feel like sticking a fork in your eye.
- That when you see a mother happily walking alongside the big river with her child, looking at the boats and birds, you can't help but feel sad that you can't walk with your child along the water without a very real fear that his lack of danger awareness will land you in a tragic story on the 6 o'clock news. And you're not exaggerating.
- Poop smears. This is a thing. A common thing.
- That hearing someone complain their little darling is such a picky eater because she won't eat her vegetables is annoying when your kid literally eats three foods.
- That you know it comes from a place of love, but you can't stand to hear someone tell you about one more supplement, diet change or technique that is supposed to help kids with autism. This isn't a virus. There is no cure.
- That when you see your own child hurting an animal, it scares the crap out of you.
- That watching your child put on his own shirt for the first time at the same age as your friends' kids are learning to read is hard. But you are just as proud.
- That every little thing is a monumental task. Breakfast. Getting dressed. Getting in the car. Riding in the car. Getting out of the car. Dinner. And sometimes you're just tired of it.
- That you long to once, just once, be a normal family for a day.
Thursday, May 1, 2014
10 things you wouldn't understand (unless you're also raising a child with classic autism)
Wednesday, May 15, 2013
Mikaela Lynch is dead: Every autism parent's worst nightmare
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| The back of my 4-year-old autistic son's torn shirt. He tried to escape as I wrote this. |
Mikaela was a 9-year-old California girl with autism who disappeared from her family four days ago. Was. A couple hours ago, she was found dead. Dead in water near their vacation home.
To most people, it's a tragic story about somebody else's beloved child. To parents of kids affected by autism, Mikaela is our child. My child. Autism parents like me live in fear of a scenario like the one that took Mikaela's life, every single day.
My husband and I have two young sons on the autism spectrum. Both are wanderers. Many autistic people are. According to a study cited by AWAARE, a collaboration of autism groups that helps caregivers prevent wandering situations, about half of autistic children wander from safety.
Our local autism support group recently held a safety training led by a police officer from a statewide autism organization. He asked how many autism parents in the room had children who wander. I didn't see any parent whose hand didn't shoot up. The question for us isn't if our kids wander. It's what kind of wandering. Talking about wandering at a meeting of autism parents is a universal greeting, sort of like talking about the weather or football at a party. Is your daughter more of a straight wanderer (takes off to follow something interesting)? Or is she an eloper (leaves the area in search of something)? Maybe a bolter (flees a scene out of anxiety or excitement)?
Just this week, my 4-year-old scared the pants off of three responsible caregivers in three different incidents. My husband and I joke that our house is like Fort Knox or a prison. Only it's not funny. We have gates, locks and fences all over. Still, our older son managed to escape the house or yard three times this week alone. {And I kid you not, I just had to stop typing to because he just jumped the front yard fence that was specifically built high and strong to protect him. He has poor gross motor skills, the cognition of an 18-month-old, poor problem-solving skills, poor focus, yet he can do this. He ripped the back of his shirt from the hem to the yoke when it caught on the fence, which was the only thing that slowed him down enough to prevent me from having to chase him down. And I'm watching him.} Fortunately in our case, so far I've always guessed right where he's going. We have ducks, chickens, pigs and goats on our little hobby farm, and he loves them. Farm animals are one of his obsessions. (Just about every autistic person has those, too.) We always find him at the back of the property next to the barn, holding a duck or a chicken. This is despite our great efforts to keep him safe and near and in sight.
I live in fear of this happening again. I live in fear of being Mikaela's grieving parents. I live in fear of our 4-year-old deciding to cross the road to see the neighbors' cows instead of our critters, and darting into the path of a bull or, worse, a vehicle. I live in fear of him wandering to water, which he loves, yet can't right himself in. I live in fear that our 3-year-old, who's also on the autism spectrum and about as tall as the front grill of a pickup truck, will someday figure out that Grandma and Grandpa live just down the road and might take off to try to visit them alone — maybe while I'm turning to see why his brother is melting down again or what dangerous object he's chewing on this time. Our kids don't understand danger. A roaring vehicle, a lake, a fire. They mean nothing. I live in fear.
We try. We try to teach our sons to listen to directions, to ask or grunt or gesture for help, to hold our hands in parking lots, to stay near. We maintain eyes-on supervision. We teach hot, stop, danger. We use words, iPad apps, picture cards, sign language. My sons wear shoe tags in case they wander and someone finds them since they can't tell their own names, let alone their addresses or that they need help. But a picture card and a shoe tag don't save a drowned kid.
I don't know Mikaela Lynch's parents. I've heard some say they should be investigated, because who lets their severely autistic child wander off naked? They might be horrible, negligent parents. But I doubt it. I've been a licensed foster parent and a mandatory reporter of suspected child neglect and abuse; I'd be the first one calling for their heads if I thought they were negligent. I doubt it, but I don't know the facts. Here's what I do think I know about Mikaela's parents, only because it's true of every autism parent I personally know, including myself.
They're tired. You know how parents of two-year-olds are often bleary eyed shadows of themselves because they're constantly chasing, diapering, teaching, redirecting and removing things from the mouths of those active little ones who are so fully dependent for their every need? They're the "terrible twos" or "terrific twos," depending on your parenting philosophy, and it's a stage kids outgrow in several months or a year or maybe two. But sometimes they don't. Multiply that exhausting stage by years. Let's say 9 years, in Mikaela's case. Now put that active toddler in a 70-pound, 4-foot body. Or a 220-pound, 6-foot body, because autistic children who wander grow up to be autistic adults who wander.
Not only are parents like Mikaela's physically exhausted, but emotionally, too. Autism parents find themselves part of a club they never asked to join. (Somebody else came up with that accurate thought.) They're tired from worrying, from researching, from teaching, from seeking help, from fighting. They fight insurance companies for treatment their children desperately need, they fight for school services for which there's never enough staff or budget, they fight to find therapists to help, for doctors to understand. Sometimes they fight for family members to understand and for strangers to stop staring. They fight because they love their child with all their heart and soul, even when autism stops the child from being able to say, "I love you, Mommy," or from hugging her willingly or even from looking her in the eye. They fight. They're tired of fighting.
The siblings are tired, too. News articles report that Mikaela was outside playing with her 7-year-old brother shortly before she went missing. I don't even know the brother's name, but I know some things about him, too, because I know other autism siblings — my daughters, for example. No matter how hard his parents try to insulate him from the worries and the stress, he's tired of being the OK child in a house with a severely affected child. He's tired of his parents being stretched thin, of having to help care for his sibling when he just wants to ride his bike and throw a ball and read a book and play. Much as he loves his sibling, he's tired of being woken up, of hearing the meltdowns, of getting what's left of his parents' attention after they give more than they ever thought they could to the autistic sibling. He's tired of fighting his own guilt for hating what his autistic sibling does, but loving her at the same time. He's had to grow up way too fast.
So what does all this griping have to do with you? With the rate of autism today, you probably know a family affected by autism. And they probably need your help, even if they won't say so. If you don't know what it's like to spend nine straight years worrying that your child will wind up in a life-threatening situation just because you want to pamper yourself by, oh I don't know, spending 30 seconds in the bathroom peeing or something, then maybe you can help. Can you babysit? If that's too hard, can you read to the child in the next room so the parents can pay bills or shower? Can you attend a school IEP meeting to help advocate for the child's education? How about pick up groceries? Lend a hand? Lend a meal? Lend an ear?
Before the next Mikaela?
Saturday, February 11, 2012
The baby and the apple
Baby Boy fell asleep eating an apple,
half on top of Big Sister,
surrounded by sleeping Daddy and Middle Sister.
Friday, January 13, 2012
Had the F-bomb and A-bomb dropped on me all in one day
After hours of examinations and tests, the nurse practitioner conferred with the doctors, then returned to us to share the news. Then, while my husband took one boy down the hall for further testing, she stuck around with me making conversation. After it became evident she wasn't going to rush off to see another patient, I realized her job was to help the parent process the devastating news.
Thing is, I didn't find the news surprising or devastating. I suppose things would be very different if I carried a child in my womb, expecting to bring a perfect baby into the world. Our path is different though. We had our perfect babies, then chose foster care because we were ready to take on children society left behind.
Still, the NP used some caring words that actually did cause me reflect and even shed some tears. She said it must be frightening to hear such serious diagnoses. No, I explained. "OK, so you knew they weren't headed for Harvard, but you had hope," she surmised.
"I still have hope," I shared, "but it's tempered with a dose of reality."
What I was feeling was anger. Anger at birthparents whose actions damaged these boys' brains. My boys. My sons.
I thought I had processed all those feelings.
Sunday, October 9, 2011
The Great Pumpkin Meltdown
When you're a foster parent, the kids in your care have been through some pretty wild stuff and they don't always have the language to tell you about it.
Little Dude apparently didn't see much fruit before he joined our family. For the first several months, every time (every time) he saw a piece of round fruit within reach he would announce, "Ball!" and launch said fruit across the room. Apples. Oranges. Tomatoes. Watermelon.
This is very taxing when your custom is to leave a fruit bowl on the table. Embarrassing when your friends and family do the same.
He now understands that an apple is food. This is after many sessions of me demonstrating, "No ball. Eat. See? Yummy!" and showing him how we cut into it and eat the pieces. An apple is still fun to throw, but now it tastes good, too. Tomatoes, potatoes, watermelon, oranges, those are still tossing toys.
This week we stopped by a roadside stand to grab some apples. I left the little ones in the car, walked the 10 feet to drop my payment in the honor box, and returned to find Little Dude wailing, kicking and screaming in his carseat. Between sobs he was pleading, "Ball!?"
Did he want an apple? No. I followed his eyes and realized we had pulled into a roadside stand in October, gaily decorated with what to him were an astounding number of orange balls. Big orange balls. Little orange balls. Huge orange balls. Tiny orange balls. Orange balls with faces. Orange balls on straw bales. Orange balls with scarecrows.
This boy LOVES balls. And I was the witch who wouldn't let him out of the car to have the time of his life throwing balls around at the great orange ball playground.
Sunday, August 21, 2011
The Toothbrushing Song
I've decided to put the lyrics to my new song in the public domain, a gift to all parents.
Sing it to the tune of the Jingle Bells chorus.
Ready?
Brush your teeth,
Brush your teeth,
Brush your teeth today!
Brush 'em, brush 'em, brush 'em, brush 'em
Brush them every way. Hey!
Brush your teeth,
Brush your teeth,
Brush them all right now!
You act like you're being tortured,
But I swear to God you're not.
Tuesday, July 12, 2011
What I've learned this month about adopting hurt kids
That people want to hear things are getting better, even when they're not. So you stop saying this kid is hurting inside. That he has hurts that aren't ever going to heal. And when they ask for the third time today if he's doing better when you've already said twice that he's not, you say yes. And watch the worry melt from their foreheads.
That people don't like to hear the words mentally retarded. Even when it's true. They prefer to think about developmental delays and learning challenges. Some kids need extra time to learn to talk, you know. He's just never been given a chance, you know. As if a brain damaged by drugs and alcohol, abuse and neglect is something a child can erase if only given enough love. As if this broken child will ever be whole.
That you can take a child into your home, shower him with everything little boys need and deserve, and he can still act out in ways you can't even mention in good company. In horrible, terrible, disgusting ways. And it doesn't only make him difficult to love, but hard as hell to like. And you wonder if you're ever going to like this kid. If anybody can ever like this child. But you keep going, and hope that you'll be the first.
Monday, May 9, 2011
Saving Henry, or, An Afternoon with a Rose-Breasted Grosebeak
This afternoon I was pushing Little Dude on the swing and adjusting the trapeze bar to the perfect height for Cherry Pie when I saw our yearling cat Bo, scurry alongside the house with something in his mouth. I nudged closer, wondering if it was the large brown bat that had been flying around a few days in broad daylight, worrying me with thoughts of rabies on wings.
When I approached I saw this. Or rather, an even sadder version of this. A beautiful rose-breasted grosebeak ooking limp and quite possibly dead.
I shooed away the cat -- repeatedly -- and summoned 8-year-old Addster to fetch Baby Boy's toy basket, sans toys I called for Cherry•Pie to bring the porch broom, which I wielded to keep Bo the cat at a distance.
Then Addster returned, upturning the basket over the bird to give it shelter for recovery. We waited and periodically checked on the birdie, each time finding him a little stronger. Our newest foster son Little Dude, who is Obsessed With Birdies, by now left the coveted yellow swing and found this part of the rescue exceptionally entertaining Eventually we realized that not only could the birdie hop a little, but Little Dude actually may begin to pose more of a danger than the feline predator. I pictured George with the bunny.
So off we went down the road. The middle of the road, which you can do in the countryside to find a new home for the biedie that didn't feature a still- hungry cat perched in the branches of the cedar overhead. (We offered cat food, the cheap grocery store dry variety, but kitty wasn't having it.)
First we gave everyone a chance to briefly and gently pet the birdie, who by now was christened Henry. I had already googled to learn that imprinting human smell is only a major concern with juvenile birds.
Finally Henry hopped away, with a bit of a leftward tilt, only to circle around and rest on my shoe. (Yes, those are my pajama pants. At 3 in the afternoon. Why do you ask?)
Then Little Dude freaked out because he wanted one last chance to see the birdie! birdie! birdie! Which was OK because I remembered forgetting to show him to Baby Boy who was riding on my back in my Ergo Baby Carrier the whole time.
So Addster scooped up Henry one more time. When he bit her, we figured that was a clear sign he was feeling better and ready to go.
This time Henry hopped into a clump of trout lilies, then flitted over a mass of red trillium and wood violets. Satisfied Henry was happier, we bid him adieu. Until Grandma pulled into our driveway, at which point the children insisted upon bringing her to the woods and repeating the whole farewell ceremony.
Enjoy your new home, Henry Grosebeak.
Monday, February 22, 2010
Embarking on the foster care journey
It's exciting and scary at the same time.
In a month or two we expect the state to have approved our license, then we'll be on the list of families ready and willing to accept foster children into their homes.
Then, someday, we'll get the call.
I feel so many emotions all at once. Blessed, that we have a safe, loving home in which to care for children in need. Proud, that my husband and I share the same values and really want to do this — together. Anxious, about the realities of how this will affect our children. Frightened, that we may encounter a child whose needs are so great we may not be able to handle them. Or that we will. Sad, even angry, that children are treated in such a way that they need to be removed from their homes. Content, that this is what we are called to do.
Monday, December 21, 2009
ChicagoNow, tear down this wall! (ad)
"Breastfeeding in public is tacky! Seriously, how hard is it to find a bathroom, mommies?"
Here's my e-mail to the ChicagoNow staff. I hope it and other letters get some quick action.
Dear ChicagoNow staff,
I understand that you purchased outdoor advertising promoting your blogs. One of the comments posted at the Armitage stop on the El reads, “Breastfeeding in public is tacky! Seriously, how hard is it to find bathroom, mommies?” This comment is discriminatory and should be removed immediately.
I get the idea behind the ad campaign. It’s clever, really. You’re posting reader comments and intend for them to incite discussion and interest people in your publications. It’s a good idea. However, the breastfeeding comment goes way too far. I know that you posted a counterpoint board later that says, “Breastfeeding in public is no big deal. Anyone who thinks otherwise should grow up.” While I appreciate the gesture, it’s not nearly enough. The original comment must be removed.
I’d like you to please think about the inflammatory breastfeeding comment in another way. What if a user posted a similarly written comment that discriminated against people other than nursing mothers and babies? Would you use it as an ad? Instead of breastfeeding women, let’s say one of these boards had a similarly worded discriminatory comment about another group of people.
Imagine this:
“Black people are so tacky! Seriously, how hard is it to find a seat at the back of the bus, people?”
Or this:
“It’s weird to see lesbians walking around in public together. Seriously, how hard is it to just stay home where I don’t have to look at you?”
Even if a user submitted these comments (and I truly hope they wouldn’t!), would ChicagoNow choose to use them as ads? I sure don’t think so!
You should also know that breastfeeding in public is a right that is protected by law in the state of Illinois. So by posting an ad that could have passersby thinking, “Yeah, I think breastfeeding in public is tacky so maybe I should suggest a bathroom next time I see a woman nursing,” you are encouraging people to violate the law. As you can read in the Right to Breastfeed Act, it’s illegal for a woman not to be allowed to breastfeed in public
Would you post an ad that encouraged people to think about violating another law via a similar comment? “Driving the speed limit is a drag! Seriously, why not just go 95 mph on the Kennedy?” or “Paying taxes bugs me! Seriously, how hard is it to hide that extra income?”
I don’t think I need to bore you with studies about the importance of breastfeeding, that a hungry baby has a biological imperative to nurse, or that we see far more breast tissue on a summer day on Navy Pier than we ever do when women are breastfeeding. I realize this comment isn’t necessarily your belief, only that of a single commenter on the site. But ChicgaoNow, you are the gatekeeper, and you have chosen to allow an inflammatory comment to be posted for all to see.
Please, remove the discriminatory anti-breastfeeding billboard now. I look forward to your response.
Signed,
Me
(formerly of Hoffman Estates)
Update!
I received this positive response. Thanks!
Hi Sue,
We appreciate your detailed letter in response to the ChicagoNow ad. The campaign has expired and has been taken down. You are correct that the goal of the campaign was to incite discussion and get Chicagoans talking, and we understand how the approach might be viewed negatively. We will keep your comments in mind when we approach our next advertising campaign.
Thanks again,
Jill
Tuesday, August 25, 2009
My simple mother's daybook
Friday, July 31, 2009
Homeschooling books are like shoes
I'm hoping to win a $50 gift certificate to my favorite homeschool supply company with this tip I submitted for their anniversary contest. For the record, I'm in love with Rainbow Resource Center. They carry just about everything (the catalog is like 3 inches thick), and I've stopped comparing prices because theirs are always the lowest.
It took a few years of homeschooling before I learned curricula are like shoes. When shopping, there’s more than one right choice that can fit your child and do the job.
I used to worry at the end of each school year about what curricula we’d use next. We would be happy with our math program, but I couldn’t help but wonder if there was some other “perfect” program out there. I would spend hours on homeschooling forums, reading reviews, and of course reading every single word of the Rainbow Resource catalog (seriously!). Now I know our math program works for us, and I’ve stopped fretting. I simply order the next level.
Like there are many choices of tennis shoes that would fit my active daughter well and look nice while protecting her feet, there is probably more than one great curriculum fit for each child. And the end of this year I decided that our grammar curriculum was good for my daughter and promised not to even read about other materials. Then a friend told me about a different grammar book, and I wavered. I finally resolved that either would be enjoyable and help my daughter learn about language. I stuck with the one I knew.
On the other hand (or foot, to stick with my shoe analogy), I’ve learned to let go of things that don’t work for our family just because everyone else says they’re wonderful. For two years we used a highly rated phonics program that my daughter found torturous. I dropped it.
I still love poring over my Rainbow Resource catalog, mind you! But I’m much more relaxed knowing that the many curriculum choices are there to serve me rather than to rule over me. If the shoe fits …
Friday, June 26, 2009
Packing lists for the girls

Thursday, June 25, 2009
My simple mother's daybook
I am thankful for ... sleeping children.
I am wearing ... my pajamas. (It's 7 a.m.!) I'll probably still be wearing them at 10 a.m.
I am going ... to take the girls to their swimming lessons later this morning.
I am reading ... "My Life on the Farm" by a man who grew up in this area. Also an issue of Redbook and the Rainbow Resource homeschool catalog.
Around the house ... are craft boxes from the girls making Brenda's birthday present, too much clutter, and some cardboard boxes to pack for our move.
One of my favorite things ... is getting to talk to Bob before he leaves for work. Usually I'm sleeping.
A few plans for the rest of the week are ... deciding whether we'll work at the farmhouse this weekend or go to the farm to work on our doors there.
Wednesday, April 29, 2009
When Johnny brings a knife to my house
Little Johnny who goes to day care in our neighborhood (you know, the one who calls me Cinnamon, mixing me up with the cat) showed me the treasure in his pocket yesterday.
"Look what my Dad gave me!" It was a little pocket Leatherman, complete with pliers, mini flashlight, and blades.
Johnny is 4. About as high as my thigh.
Me: "Does that thing have a knife on it?!?"
Johnny: "Yep!" (Obviously very proud.)
I find myself using a lot of statements with this kid that begin with, "At our house, we ... ." This time it was, "At our house, kids don't play with knives. Here, I'll hold it until it's time for you to go."
So am I overreacting? Or is it absolutely nuts for a 4-year-old to have his own pocket knife? I can totally understand how some other parent (not me) might want to allow their child this tool. Under supervision. But never to run off with it to day care, and from there to wander over to the neighbor's. Am I way off base on this?
This is the same child who taught my kids to play shooting games. I know I'm a pretend-play pacifist, and that some perfectly normal children play pretend gun games. But it's too much for me. I don't even allow squirt guns in our house. "Johnny, at our house we don't play shooting games," I tell him as he points a stick toward my head.
"It's not a gun. It's a stick!"
Me: "I know. We still don't do it."
Johnny: "Aww, I won't shoot people then. C'mon, let's go shoot some deer!"
Me: "Johnny, we don't play any shooting games at our house."
Johnny: "What if we're huntin' for turkey?"
Later I'll regale you with stories of how when the kids play "jail," Johnny knows waaayyy too much of the terminology. Words like "release" and "bail" and "bond."
That's why they play at my house. I give out homemade popsicles to make sure.
Thursday, February 12, 2009
The bead-up-the-nose incident
Second child syndrome
Wednesday, January 21, 2009
My response to the New Yorker breastfeeding/pumping article
I posted this letter at Salon under the critique:
Pumping isn't the only option
It's a pretty comprehensive piece. What's missing: That pumped milk is a better choice than none, but a poorer choice than actual breastfeeding for reasons beyond emotional (physiological and medical). That an option somewhere between lactation rooms and lengthier maternity leave is on-site or nearby day care so the baby can breastfeed (the real thing, with actual human contact) a few times a day, taking no more time than pumping. And even better, employers realizing that babies in the workplace (gasp!) and mothers working from home are not revolutionary, but something that has worked well for many since the beginning of human existence. (I personally know it works for farm women, for example, but maybe not for on-duty skyscraper window-washers).
It's true that pumps may actually have a negative effect on breastfeeding in some, but certainly not all, cases. They're not nearly as efficient as the baby, so seeing a measly few teaspoons in the bottom of a bag can be disheartening. I've had a number of women who were WIC clients call and ask me how they can get an inexpensive pump, believing one was necessary for breastfeeding even if no mother-baby separation was in the cards.
The author was just plain wrong here: "Pumps put milk into bottles, even though many of breast-feeding's benefits to the baby, and all of its social and emotional benefits, come not from the liquid itself but from the smiling and cuddling (stuff that people who aren't breast-feeding can give babies, too)." Other caregivers can smile at and cuddle the baby, but it's not the same as Mom. The Salon piece seems to recognize this.
Regarding the Salon review, I don't see the ulterior motive she thinks the New Yorker author was trying to say. The New Yorker author is a writer; I'm pretty sure she could have found the words to state her point if it was anything other that what she did write. Those who are reading something into this that isn't there might be feeling some pangs of guilt themselves.
Monday, January 12, 2009
Dori is starting to recognize letters
Last night she sat on my lap as I read the paper. The “Blondie” comic title caught her attention. Right away she pointed to the O in Blondie and said, “O spells me!” as she pointed to herself.
Then she became concerned. “O spells, Dori,” she insisted, “it doesn’t spell them!” and she pointed to the characters.
Tuesday, December 23, 2008
Nasty old sweater turned fabulous
- To make, cut a piece of the purple about 2 inches by 8 inches, with the grain running the short way.
- Fold that in half the long way, wrong sides together, then baste along the raw edges by hand with a running stitch.
- Simply roll up the long piece, tucking under the raw edges until it becomes an appealing rose shape. Stitch the underside to keep it in place.
- Cut out two diamonds for leaves.
- Pinch them from the underside, about in the middle, and tack, forming a leaf shape by hand and adding tacks as needed.
- Stitch the leaves to the bottom of the rose.
- Sew on a safety pin or brooch pin.

