Friday, May 29, 2015

The Special Needs Blogger Weekend Link-up: Right this way

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Seizures are the devil

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, May 28, 2015

The best parent therapy in the history of parents: a video

No matter how worried I get about him, this is just what I need to soothe me. It's a reminder of how far he's come—for years, he didn't say the words—and how lucky I am to have such a good-natured, cheerful and loving boy. 

Wednesday, May 27, 2015

On not being a brave special needs parent

Max is doing OK following the Saturday night seizure. He went on the increased anti-seizure med dosage last evening, and soon after he felt very sleepy, as the neurologist said he would. He crashed by 7:00 p.m.

I remain haunted by what happened; I can't stop picturing how Max looked when he was seizing, his body shaking, his eyes rolled back and his consciousness gone. A comment a reader left rang so true. As Michele L. noted, their neurologist "says she worries much more about the effect of these seizures on us, the caregivers that watch them, then she does the kids."

We so need that Men in Black Neuralyzer to erase the memories of seizures we've seen.

I shared here about Max's seizure not because I think I am brave, but because it is cathartic. I lived through it with him not because I am brave, but because what choice do I have? In fact, Dave and I are lucky Max does not have a full-blown seizure disorder, as some children with CP and other neurological disorders do. Some parents contend with seizures day in and day out. As I sit here freaking out about one damn seizure, I think of them and what they go through.

I am not brave for raising Max. Determined? Yep. Tenacious? Yeah. Refuses to take "no" for an answer? Oh, yes, as various members of Team Max would readily agree. But as I lay in bed holding a violently shaking child, I was scared out of my wits. I wanted that seizure to be over, for Max's sake and my own.

There are times as Max's mom when I'd like nothing better than to crawl under the covers, as happened recently after I got a dismal report from our school district on the results of Max's speech testing. Given that there's only so much big, fluffy comforter therapy you can do, there's Pinot Grigio, unless you are pregnant and then you are left sitting in your kitchen at night and binge-swigging orange juice despite your doctor's orders to watch the sugar.

Having children poses a daunting paradox: You are acutely aware of the need to protect them—and how utterly powerless you are to protect them. As a college acquaintance commented on Facebook, "I think every parent at one point has felt complete helplessness regarding their child's health, and it really makes you the most vulnerable and frightened."

Although most parents never see problems coming, as the parent of a child with special needs you do know what devil to dread. I don't worry how the cerebral palsy will affect Max over the years, because that's too amorphous to consider. I do worry about the seizures, because I know how they consume his body and that he is at continued risk for them. I worry that Max is having some sort of seizure when he stares into space (a potential absence seizure), lets out weird noises at night or has a muscle spasm.

I am so not brave in the face of that devil.

After the seizure passed, I desperately wanted my mom. Except she is elderly and I chose not to burden her with this. Besides, I AM THE MOM. This responsibility is on my shoulders, ones that sometimes slump from the weight of a situation.

I take comfort in knowing that Max is being looked after by excellent and kind experts. I had a reassuring conversation with his neurologist last night about the increased medication, what kind of seizure it likely was (a generalized seizure, aka a grand mal) and why it happened (metabolic changes combined with a series of late nights). And then, there's that it-could-have-been-so-much-worse perspective—I was right there when the seizure started plus it lasted under two minutes, as my friend Peggy and I texted about yesterday.

I need that reassurance to weather the scary parts that come with this parenting job. I will continue to live in fear at the thought of Max having another seizure, my saving grace being my ability to compartmentalize upsetting things. And I will carry on, because I am a mother doing the best she can. Pass the OJ, please.

Tuesday, May 26, 2015

Seizures are the devil

"Fireman Max! Fireman Max! Can you hear me?" I pleaded as Max lay next to me. It's the name he responds to these days. Only he wasn't answering.

We were down at the Jersey Shore for Memorial Day weekend, and Max and I had fallen asleep in the big bed at around 10. That turned out to be lucky, because otherwise I wouldn't have heard him having a seizure. I woke just before midnight when he let out a few yelps. And then, his arms and legs were shaking uncontrollably.

"DAVE! SEIZURE!" I yelled, and he came running in from the living room. "CALL 911! NOW!" Dave turned on the lights, and I could see Max's eyes rolled to the back of his head. I slid him onto his side and slipped my arm beneath his head as Dave dialed. I hugged Max into my body, willing the seizure to stop and terrified.

Max hasn't had a seizure since he was 5 years old, and it was a pretty mild one compared to the grand mal he'd had at 18 months that lasted for more than a half hour. Trileptal had kept them under control...until now. I realized that my purse with Max's emergency anti-seizure injection, Diastat, was at home. Dave and the kids picked me up from the airport Friday night (I'd been in Chicago at the United Cerebral Palsy conference), and we'd driven directly to the beach.

"Fireman Max! Fireman Max!"

He didn't respond.

We were actually having his medication levels tested next weekend. Max is at higher risk for seizures as he goes through growth spurts, the neurologist has said. A few seizures don't have an impact but if they become a regular occurrence and last long, they can cause brain damage.

Seizures are my boogeyman, one of the things I fear most in this world. As I helplessly watched Max convulsing, it seemed like the devil had taken over his body. Seizures are the closest I have ever come to seeing Max die. That was horrifying to write, but it's nowhere near as horrifying as seeing your child gone from you.

After about a minute and a half, the shaking stopped. For another couple of minutes, Max was unresponsive, his eyes staring straight ahead, his pupils dilated. Eventually, he nodded when I said "Fireman Max!"

By then, a policeman and a resort security guard had arrived. The EMTs were on their way. It turned out the guard was a firefighter by day, and he showed Max his ID. That barely got a rise out of him,  he was so out of it.

When the EMTs came they took a look at Max and asked if we wanted him to go to the hospital. We didn't see any reason to subject him to it; there wasn't anything else to be done.

And then everyone left and soon it was just Max and me lying in the dark. He started snoring gently, as I held one of his hands. He'd been up late for several nights in a row. He'd also had a bunch of late nights back when he had the last seizure, and so fatigue was a likely cause of this, too. I got up and emailed the neurologist.

In the morning, Max literally bounded out of bed at 7:30. He was his usual Max self, maybe a little paler than normal but good-humored and eager to down one of his usual Dannon Whipped Chocolate Yogurts for breakfast.

"Max, are you feeling OK?" I asked.

"Yeah!" he said, smiling.

At age 5, Max wasn't able to explain stuff to me, but now he can.

"Max, do you remember having a seizure last night?" I asked.

"No," he said.

That was good.

"Leese!" he said.

He remembered that there was a policeman standing in the bedroom, but that was about it.

"Happy?" Max asked. I know I looked worried.

"Yes, I'm happy," I said, untruthfully. Later, Dave and Max headed out to rent a golf cart for a couple of hours, as we'd promised him, and Sabrina and I went to the beach. We talked about the seizure. She'd heard Dave calling the police, then fell back to sleep. She asked if Max was OK, and I said he was.

Sabrina built sand castles and I sat on a towel, envisioning Max having the seizure.

In a bit, Dave texted me a photo. He and Max were having a fun time watching a Memorial Day parade.

A fire truck passed by, and a firefighter recognized Max from a visit to his station.

"Hi, Fireman Max!" he shouted.

Max responded with a great, big grin.

The neurologist is raising the dosage of his medication, and hopefully that will work. We will do our best to ensure this doesn't happen again, although I have a feeling it will.

I had Max sleep in our bed last night. I tucked him in early, and lay down next to him for a bit.

"Happy?" he asked.

"Yes," I promised him. "Are you?"

"Yes," he said, and he was.

Photo: Martin Luff

Friday, May 22, 2015

The Special Needs Blogger Weekend Link-up: Good stuff, right here

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Dolls with disability: The new line people are loving

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, May 21, 2015

11 life lessons from the school spring show

When you want to impress, wear a power color.

Sombreros make everything more fun.

Let the ladies lead.

If both you and the lady simultaneously trip and fall, laugh it off.

Perfection is not half as important in a performance as true joy is.

Listening to "You are my sunshine" never gets old.

No matter how much you've got going on, sometimes you just have to sit back, relax and enjoy the show.

When in doubt about what to do, flash a dazzling smile.

Play the tambourine like a boss. Because nobody really knows the right way to play a tambourine, anyway. 

Take a bow for your accomplishments. Heck, take ten.

The best way to know how far someone has come is to consider the past. This is the boy who used to stand outside the room where the show was held, sobbing and peering in apprehensively as if he were about to enter a torture chamber.

Look at him now.

Wednesday, May 20, 2015

What you can and can't fix

This weekend, I replaced the broken faucet in our bathtub, and I felt really proud of myself. I am a fixer by nature. I like to repair small stuff around the house (although I usually don't mess with plumbing). I like to fix up writing, why I became an editor. I like to help friends fix their problems.  

After we had Max, I had to accept that his progress was largely out of my control, although I made sure he had as much therapy as possible and the best specialists we could find. Occasionally, frustration at not being able to better help him flares up. Especially recently because Max so wants to talk, because I don't always understand what he is saying and because I cannot make his consonants, vowels, words or sentences more intelligible. 

I wondered if my surge of pride over repairing the faucet related to the speech issues I can't fix.

At the plumbing supply store, the guy behind the counter convinced me that replacing the faucet was as easy as undoing a screw beneath the old one, pulling it off and popping on the new one. 

One unforeseen challenge: Squatting down to get close enough to the screw, thank you preggo belly. Plus it was rusted. But I finally dislodged the faucet, revealing the end of a copper pipe sticking out of the wall. The new faucet went on after considerable pushing and grunting. I fastened the screw. I turned on the knob and water poured out of the spout—and gushed from the faucet's base. Uh-oh. I took off the faucet. I looked inside. I noticed the new faucet was missing a washer the old one had. 

Of course, I discovered all this after the plumbing supply store was closed. So then I had to trek 15 minutes away to get a new faucet. But, victory! It slid right on. I tightened the screw like a pro. Water came only out of the spout and showerhead. 

"Wow, I'm impressed!" Dave said, and of course for the next few days I kept reminding him how awesome my accomplishment was. 

This weekend, I also had a heart to heart with my awesome friend Wendy. (Hi, Wendy!) We were talking about Max's speech, and how much he'd progressed. She got to spend some quality time with him when I had to drop off Sabrina at a sleepover, and she told me she was so impressed with his reading and that she'd understood most of what he said. This was quite the feat, given that I don't always understand stuff he's saying. 

I told her how Max really wants me and Dave to understand his speech and that lately, he refuses to use his speech app around us. I mentioned an app in development, the TalkItt, that will translate unintelligible pronunciation into understandable speech. She asked about what else could be done to help his speech along, beyond the therapy he's already getting.

"Nothing, really," I said. "The progress will come on Max's timeline, like all his other progress." I said this pretty matter-of-factly, because it's the truth. And yet, grappling with the realities of Max's speech is one of the hardest parts of parenting him lately.

Although the phrases he likes to repeat ("I love fire trucks!" and "My favorite sport is bowling!" and "I want to sleep in a hotel in New York City!") are easy to discern, he tends to pronounce certain words differently every time (like "school" and "fireman" and "baby") and I don't get them at first, or at all. 

When I'm not sure what Max is saying, he will repeat the words again and again and again, insisting that I understand him without the help of the speech app. Only when he gets frustrated will he at least peck out words on his iPad, my iPhone or whatever keyboard is handy.

It is a natural instinct to want to communicate with your child. While I am beyond grateful for technology and that Max is able to use it to express himself, oh, how I wish talking didn't have to be this hard. 

I cannot fix it. 

And so, I take satisfaction in what I am capable of fixing in my life. Although, sorry, I am not available to do your plumbing work.

Tuesday, May 19, 2015

Dolls with disability: The new line people are loving

One doll has a walking stick, another a hearing aid and one, a large birthmark. They're debuting soon in response to the Toy Like Me Facebook campaign that calls for more diversity in toys, particularly ones geared toward kids with disabilities. People posting comments and photos have shared ideas for everything from dolls with hydrocephalus to ones with walkers.

London-based manufacturer MakieLab is creating the dolls with disability and differences via 3D printing. Kids will be able to customize the look of the dolls—the gender, outfit, hair and eye color—then pick add-on aids and accessories, including a wheelchair. It's yet one more way 3D technology is a game-changer for people with disability.

Dolls with a disability aren't very common. Some kids have been concocting their own versions, like these dolls created by a 10-year-old who's been an above-the-knee amputee since infancy, complete with crutches from broken hanger pieces.

Another 10-year-old girl with a form of muscular dystrophy started a petition to get American Girl to release a doll with a disability, and snagged 145,000-plus signatures. As she noted, "Disabled girls might be different from normal kids on the outside. They might sit in a wheelchair like I do, or have some other difficulty that other other kids don't have. However, we are the same as other girls on the inside, with the same thoughts and feelings. American Girls are supposed to represent all the girls that make up American history, past and present. That includes disabled girls."

Alas, diversity in dolls does not cheap; the MakieLab beauties will run $108 each. Hopefully, major toy companies will see the attention these dolls are getting and follow suit with more reasonably- priced dolls. Some small enterprises have come out with diverse dolls, including Extra Special Dolls, started by the mom of a girl with Down syndrome who wanted dolls that resembled her daughter. Doll maker Karen's Kids offers a Special Angel line with customizable dolls including ones with prosthetic limbs, feeding tubes and cochlear implants. The B Independent site carries crutches, a seeing eye dog and cane and other accessories for dolls.

It will be awesome for kids with disabilities to get their hands on these dolls. And you know what would also be awesome? For kids without disabilities to play with them, too.

Images: MakieLab

Monday, May 18, 2015

My other kid's special needs

Max literally did a happy dance in our kitchen yesterday morning, because he and Dave had a joy trip planned to New York City that included a train ride, eating sushi, bowling, eating some more and generally roaming around. Max ran over and threw his arms around me.

"Oh, Max," I said. Hugging is still a relatively new thing; for years, it wasn't a movement in his repertoire. Even now that he can move his arms that way, he still doesn't instinctively do it a lot.

Sabrina cocked her head and said, whining, "You never talk to me like that!"

In some ways, she wasn't wrong. I do have this special tender, coddling Max voice I use when he's done something new or particularly wonderful. It's a voice that comes from years of hoping, the roots of which remain embedded in the gloomy future the doctors in the NICU predicted for Max.

But I have unique sounds for Sabrina, too, and I reminded her.

"Honey, when you came home and you'd gotten 100 on your social studies test, wasn't I so excited for you?" I reminded her, and she grudgingly agreed.

I often joke to friends that sometimes Sabrina is my child with special needs. Like many siblings of children with disabilities, she recognizes that Max needs (and requires) extra attention, whether I'm helping him down the stairs or going over homework with him in depth.

Dave and I do our best to do things just for her, both so she knows that she's special and because it's nice for us, too, to each have time alone with the kids.

Sabrina had already asked to do facials after Max and Dave had left, which I loved. I started doing them around her age. For years, I followed the instructions on a page I'd ripped out of Seventeen magazine that included a scrub made out of pulverized almonds and honey, followed by an oatmeal and yogurt mask. During college, a woman at a Clinique makeup counter with beautiful skin told me her secret: She applied an egg yolk to her cheeks, for softness, and the whites to her forehead, nose and chin to help control oil, and for years I did that. Then I had kids and I barely had time to wash my face.

I pulled out a grainy scrub and showed her how to rub it into her skin in little circles.

Then I found an oatmeal mask. We smeared it on, hung out on my bed, took selfies and chatted about summer camp and other upcoming stuff she's psyched about. Then we wiped off the masks with a washcloth.

"Ooooh, Mommy! My skin feels so soft!" she said, and it did. A little TLC was just what she needed. And I looked at least ten years younger! Right.

Friday, May 15, 2015

The Special Needs Blogger Weekend Link-up: Click it!

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: A teen with autism kicked off a plane and people just don't get it

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, May 14, 2015

My child with special needs loves me, no matter what people think

This post is by Hillary Savoie, PhD, mom to Esmé, age 4. Esmé has PCDH19 Epilepsy and SCN8A Epilepsy, rare disorders caused by genetic mutations. She has severe developmental delays, failure to thrive and a movement disorder; she is tube-fed, nonverbal and non-ambulatory. She is also, as her mom says, adorable, super-goofy and very clever. Hillary blogs regularly at The Cute Syndrome. She is the founder of The Cute Syndrome Foundation, dedicated to raising research funds and awareness. 

I know, beyond a shadow of a doubt, that Esmé loves me deeply. I know it with the same certainty that I know my love for her. I know Esmé loves me by the thrilled sounds she makes to me. By the way she sinks her head into the softness of my side. By the way she looks meaningfully into my eyes as if she is trying to transmit an important message to me. I know by the way her emotions jump across the space between us.

I am still so close to my daughter that I believe we often mistake each other’s body for our own. Her hands explore my mouth and hers, my fingers tickle her sides and I laugh with delight as the tips of my fingers tickle me back, I need to remind myself to breathe when she cannot. More than four years of supporting her body, reading her motions, compensating for her weaknesses has made her an extension of my body. As her need has made me an extension of hers.

In many ways, we love each other as we love ourselves—in that honest, quiet, accepting way.

But I also know how this must look from the outside. Esmé doesn't run to me and leap into my arms. She doesn't speak the words "Maman I love you!" She doesn't cling to my leg. Loving a mother in these ways requires understanding that we are, in fact, two separate people...and as a result it is the kind of love that grows in time. It is the kind of love that develops slowly as children and parents move from the immediacy of newborn love to the acknowledgement of a child's individuality all the way through to the respectful love that exists between adult children and their parents.

It is a love that is impossible without distance.

And I would be lying if I said I didn't crave this other love from her. But I'm not certain I realized how much I craved it until last night.

In December, Esmé kissed me for the first time. It was a tremendous experience. I knew that she was trying hard to show me that she missed me, more likely than not trying to do something that she thought would please me. It was very loving, but quite fleeting. In the manner of much of Esmé's affection it is a here one moment, gone the next kind of an experience. There is no negotiation, her love is ethereal. If you look at it directly it might disappear.

I accept this.

I pride myself on loving Esmé the way you can appreciate an exquisite flower—carrying the image with me, without needing to pluck it, without needing to claim it.

But, at the same time, it is undeniably isolating.

I grew up in a family filled with a lot of love. We are an effusive bunch. There are hugs, squeezes, back rubs, kisses, loving words--more than enough to go around. Most of my life I have savored that love. But I have learned to live with less of it in the last few years...part of me stiffening against it, afraid that the kindness might unravel me.

Another part of me is determined to explore how love can exist in the less obvious spaces--how you can nurture the subtle love that grows in between words, in the clinical actions that fill much of my time with Esmé, in the stillness of her body for the pause between an uncontrolled hand smacking my chest and a loss-of-tone head butt against my lip and nose. And, I suppose, another part of me has felt that I've not yet earned it...that maybe, one day, I will have climbed high and hard enough in the name of my daughter that I might yet deserve it.

Recently Esmé has started to hug me. At first I mistook it for a flinch—an indication that she did not want to be set down—or a little snuggling in to get comfortable on my shoulder. But, much in the manner of her kisses, she has kept repeating the action, to be certain I understand her intention. The first time it happened clearly was after I lifted her from someone else's arms—she'd wanted me in a way that I'd seen other children want their mommies...but never experienced...and she had indicated her pleasure at our renewed closeness by squeezing me, letting go, sitting up, and then returning with a squeeze.

I so appreciated it, but didn't want to look at it directly for fear of this love slipping between my fingers. "Oh Ezzy, Maman really loves your hugs, thank you!" I'd said. And we moved on.

She'd repeated the hugs a few times again over the last few weeks, but not with great intensity until last night. She was struggling--having been awake since 1 am with only a brief nap. I brought her into her room to change into her pajamas. I sat on the floor in front of her dresser and stood Ez up next to me, my left leg and arm supporting her. I asked, "Ezzy, what color pajamas do you want tonight?" She became giddy at the prospect of her pajamas, smiling and clinking her little fingers against her teeth. I held up a set, "Green?" She turned toward me and smiled bigger. "Ok, green it is, my love."

She suddenly lunged toward me, I braced myself anticipating an unintentional smack. But, instead, she wrapped her slender unruly arms around my neck, settling her mouth next to my ear as if she was going to whisper me a secret. And she squeezed, hard. The left arm working harder than the right, as usual.

In that moment I realized with such clarity how difficult it must be for her to do this...the coordination alone is a feat, let alone the strength to wrap me up into her grasp. In that moment I understood in my heart that she's not been avoiding hugging me for lack of desire, but that she'd been unable figure out how to do so.

When she released me and leaned back to look at me, a look of pride on her perfect little face and a clump of my hair caught in the stiffened fingers of her right hand, I crumbled, crying, quietly hugging her again. She squeezed me back again, sensing my need.

We held each other for a moment, and then let go.

Hillary is the author of Around And Into The Unknown, a memoir about her family's journey seeking a diagnosis. Her second book, Whoosh, will be out late this summer (from Ponies + Horses Books).  She is the Chief Communications Maman at the Feeding Tube Awareness FoundationThis post originally appeared on The Cute Syndrome. 

Wednesday, May 13, 2015

A teen with autism kicked off a plane and people just don't get it

Among the reactions I've had to the viral story of United Airlines kicking a teen with autism off a plane, my strongest one has been this: People just don't get autism. And I'm not only talking about the flight crew's reaction to the situation.

The gist of the story is that Donna Beegle, Ed.D. (an accomplished anti-poverty advocate) and her 15-year-old, Juliette, along with her husband and son, were en route home to Portland after a Disney World vacation. Juliette didn't have dinner before boarding the connecting flight in Houston, and although Donna brought snacks, Juliette didn't want them. So Donna asked a flight attendant if she could purchase a hot meal from the stash in first class, noting that her daughter could have a meltdown involving scratching in frustration. Another passenger on the flight has said that Juliette had been "howling."

After some back and forth, Juliette eventually got rice and jambalaya, calmed down and watched a video. Then came the announcement that the plane was making an emergency landing in Salt Lake City. Soon after, the family was escorted off the plane by police. Donna Beegle is planning to sue United Airlines. In taking her story public, she's said, she hopes that airlines will start training flight crews to better handle passengers with autism.

United Airlines issued this statement: "After working to accommodate Dr. Beegle and her daughter during the flight, the crew made the best decision for the safety and comfort of all our customers and elected to divert to Salt Lake City after the situation became disruptive. We rebooked the customers on a different carrier and the flight continued to Portland."

So there's that. And then there have been social media reactions that make you despair about how little people know about autism—or kids with special needs in general—and the startling lack of compassion out there.

People want to know why the mom didn't bring hot food or a meal in the first place. True, you typically can grab something in the terminal but that didn't happen. As Donna said, "I had no real way to bring hot snacks in my bag." Perhaps it was a fail on Donna's part. Either way, she doesn't deserve to be attacked. You can bet she never imagined the plane would end up making an emergency landing as a result. We are parents of the human variety; we aren't perfect, and we do what we can to handle imperfect situations.

As to why Juliette did not down some food with the family before she came onboard, well, maybe she wasn't hungry then. Or maybe she was tired from traveling—the family had earlier been on another flight. No matter how the situation came to pass, though, the reality was this: Juliette needed to get some hot food in her. And the mom asked for some. Is that so out of line? So terrible? So wrong? Would the social media mafia have reacted with such outrage to a request for a hot meal if, say, it came from the parent of an out-of-control toddler without special needs?

People just didn't seem to understand why a hot meal was so critical—or how this mom could have had the gall to ask to buy one, given that she was in coach seats. They have no clue about the texture preferences that kids with autism (and other special needs) can have. A teen who can only be satisfied by a hot meal? Yes, it happens. It's not about entitlement. It's about sensory issues and, as can happen, rigid ways of behaving that give a person with autism comfort.

People pointed out that Donna told the flight attendant that her child would throw a fit, with scratching involved (although she didn't say that she'd scratch others). Please felt that the captain had every right to be concerned that the girl could be a threat to other passengers. Who knows why, exactly, the captain decided an emergency landing was necessary. But I do know from experience that when you're on a flight and your child is on the verge of losing it, you will do anything and everything to keep the peace. If this mother sounded desperate or frustrated as she spoke with the flight attendant about the situation, and when she warned that a meltdown and scratching could ensue, she was expressing genuine urgency.

People noted that it wasn't the flight attendant's job to parent a child. True. But that wasn't what Donna Beegle requested. She simply asked for some hot food. See: Is that so out of line? So terrible? So wrong?

People said that Donna acted as if her daughter were the only passenger on the plane in making her "demands." Even parents of kids with autism called her on that. While Donna surely wanted to pacify Juliette, she likely was also eager to avoid annoying people sitting nearby. The intolerance from fellow passengers when a child with special needs loses it can be sky high. I'm sure Donna is no stranger to that.

Yet other commenters noted that the parents needed to learn how to better parent. As if the behavior of a teen with autism has anything to do with crappy parenting. You'd think that sort of misguided old-think would be gone by now but, no.

And then, this comment: "Maybe they shouldn't fly if their daughter's autism is so bad that her needs can't be met on board a plane." THUD. That was the sound my jaw made when it dropped to my desk. It is both mind-boggling and sad to see people's blatant discrimination against those with autism, who have as much of a right to fly or generally lead their lives as any other human being. In fact, Juliette has flown to London, Paris and 22 states, without similar incident. Hopefully, her future travels won't be affected by lingering trauma.

People with autism can have issues connecting with others, that's true. In the aftermath of this incident, it's blatantly clear that a whole lot of people have issues connecting with people with autism, or their parents. Parents of children with autism aren't trying to get away with anything in these sorts of situations. Usually, they're just trying to get by. Requesting a hot meal isn't such a big deal. Enough with the questions about why this mom didn't BYO hot food or wasn't prepared. Here's the ask that people should be pondering: How about some empathy?

Image source: Flickr/Robert S. Donovan

Tuesday, May 12, 2015

Driving to nowhere and everywhere

One of Max’s favorite activities is sitting in our minivan's driver seat and pretending to drive places. Lately, he wants to go to firehouse restaurants. He’ll steer the wheel, put on the blinker, mumble to himself (I assume about the bad drivers on the road).

I sit in the passenger seat, chat with him, check email or generally ponder life. I think about Max wanting to explore places, especially restaurants, and how he used to run screaming out of them when he was little. How this boy has changed! I ponder upcoming work, compile a mental list of stuff in the house that needs fixing, make plans for Max’s bar mitzvah next April and consider that when the baby arrives, the two of us can hang in the back and Max can chauffeur us around.

Lately, thoughts about the baby have been consuming these pretend drives with Max, particularly the division of my time. Max needs a fair amount of attention. Sabrina needs lots, too, because she is well aware of what Max gets and demands special attention as well. There is only so much of me to go around. How will I handle it?

“I love fire trucks!” Max announces out of nowhere. He's making sure that I haven't forgotten since the last time he told me, maybe 20 minutes ago.

“Yes, you love fire trucks!” I agree, and he continues driving on his merry way.

I ponder the stuff we need to get for the baby. I'm grateful we still have a bassinet from the kids' baby days; we've given everything else away. As high-tech as gear has gotten, you just can’t go wrong with a good old bassinet.

We have four bedrooms in our house, including one in the attic that's a guest room/storage spot for random stuff. We’re planning on putting a compact crib in a sitting room outside our bedroom, which will buy us time before we either move Sabrina up to to the attic or let the boys share a room.

Sabrina can’t wait to take care of the baby, she tells me. She’s like I was at her age: I loved babies, and started babysitting at age 10. She is planning to use her allowance money to buy the baby books, and has been asking for suggestions. Adorbs, as she would say. Last night, I drove her to a lacrosse game at 7:30. I picture myself feeding a baby on the playing field. I was one of the world's most bumbling public nursers; I always ended up flashing people. Third time's the charm?

Once we have three kids, Dave and I will have to do a lot more juggling to make sure Max and Sabrina get to their activities. Years ago, a boss of mine gave a speech in which she mentioned that parenting is less about juggling and more about playing catch: Here, you handle this, catch! Oh, it's my turn, got it! In recent years, Dave and I have had a good schedule flow (what I call organized chaos). We’ll be recreating it all once the baby arrives.

This is what my brain does, when there’s not much to focus on: fret about the future. Thankfully, I have pretty much controlled the impulse when it comes to Max, as I learned the agonizing way that worrying about what lies ahead for him does me no good.

“Max, what are you going to eat at the restaurant?” I ask, rhetorically, because there is only one answer.

“Mac ’n cheese!” Max says. Then he focuses on making a turn.

And we’re driving to nowhere, with my brain going a mile a minute. I look at Max's sweet face. And I know that no matter what, we will figure out the way, like we always have.

Monday, May 11, 2015

The progress never gets old

On Mother's Day, I got handmade cards from the kids, flowers from the husband, brunch with my sister's family and the priceless gift of sleeping late from everyone. Max and one of his occupational therapists also made me a plaster plaque with a fire truck on it and the initials F.M. (Fireman Max), which was incredibly thoughtful of him—how did he know I adore fire trucks? Oh, wait.

I also got an unexpected gift from Max; it was on his construction paper card.

On the front of it, he wrote "I love you." He's been writing that for a couple of years now, and it's getting to be more and more legible.

And there, beneath the "I love you": A little heart. The first time he's ever drawn one for me. It was a pretty great looking heart, too.

Oh, how it made me happy.

Twelve years into parenting Max, my heart never stops beating faster at every new thing he does, big or small. I mean, every. Not because I don't expect him to keep doing stuff—of course I do—but because I know how hard won every bit of progress is.

Drawing a heart isn't always easy even for kids with typical fine-motor skills. So far a kid with spastic cerebral palsy that affects his arms and hands, this is a feat.

Therapists have regularly noted that handwriting will likely never be Max's thing. I get that—it's far easier and quicker for him to type out sentences on his speech app but still, he is coming along. There's no end goal here; I'll just take it as it comes, and relish it all.

Friday, May 8, 2015

The Special Needs Blogger Weekend Link-up: What to read on Mother's Day

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Special needs motherhood, summed up in GIFs

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, May 7, 2015

Special needs motherhood, pretty much summed up in GIFs

 When your child does something for the first time—speaks a new word, takes a step, uses a spoon, points to something—and you want to see it again and again and again

How life often feels

Gearing up for the IEP
When the the insurance company rep assures you that she has located the missing bills you submitted and payment will be made as soon as possible

When that payment from the insurance company still hasn't arrived

When your husband takes the kids out and you have the house to yourself

 In the kitchen after everyone has gone to sleep, stress-eating once again

 What you telepathically tell your child every single day of his life

 When you catch a stranger blatantly staring at your child

When you get out of the house, even if you're just running to CVS to buy deodorant

What you're thinking when the therapist gives you yet more exercises do with your kid, on top of the countless ones she's already recommended

What you say

 When your kid won't stop talking about train schedules/Minecraft/dinosaurs/fire trucks/maps/LEGOs/car logos/[insert obsession here]

In the waiting room, wondering if your child's name will ever be called

When the insurance company actually reimburses you

You, without coffee

When you read about typical childhood milestones (note to self: stop reading that stuff)

How you see your child's determination and ability to overcome challenges

 Your secret fantasy

What you want to do when you're on an airplane and your child won't quit kicking the seat in front of him

 When you realize you forgot to fill out one of the eleventy billion forms for your child's school/specialists/therapies/activities/events

When your child giggles and suddenly everything is right in the world

You. Powering on. Every. Single. Day.

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