Friday, September 30, 2016

The Special Needs Blogger Weekend Link-up is here for you

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: The best therapies for children with cerebral palsy

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, September 29, 2016

The best therapies for children with cerebral palsy: Tips from a top doctor

This look at the best therapies for children with cerebral palsy and brain injury is adapted from the new book The Boy Who Could Run But Not Walk by Karen Pape, MD. I've known about Dr. Pape for years—she is one of the most warm, practical, innovative, inspirational, hope-giving doctors out there with a focus on cerebral palsy. Her book is the same. It is filled with helpful, clear-cut information; inspiring and telling stories about children's improvement; and so many words of encouragement. It is a healing book not just for children but their parents, too. 

A neonatologist and clinical neuroscientist, Dr. Pape has challenged the one-time belief that babies born with early brain and nerve injury were out of luck, making the case for neuroplasticity and the ability of the brain to heal. The title of the book refers to children with cerebral palsy who can run better than they can walk—they had learned to walk while their brains were still damaged and immature, and learned to run after once their brains had time to recover.

What to do in the first four years


It is common practice to recommend massage and stretching once CP is diagnosed, but research studies done later in childhood when spasticity is firmly established have demonstrated that stretching did not have much effect on established spasticity. Why not try it earlier? Starting at four years or later is clearly too late.

Experienced athletes understand that stretching and massage improve recovery, as well as maintaining flexibility. Most adults automatically stretch when they have been hunched over a computer for a long time. My dog stretches every time she gets up from a nap. Babies stretch in the same way when they wake up. Children who have an early neurologic injury can't do it on their own. They need help. It seems obvious to me that we should be doing this work with them as part of the daily routine. At least twice a day, every day, until they stop growing. 

Start right, stay straight

Babies first investigate their hands with their mouths, and then gradually, between three and six months, use them to reach for things that they see. Babies with an early brain or nerve injury rarely go through this exploratory stage. When the child with impaired motor control tries to get her hand up to her mouth, she turns on all muscles, causing the hand to fist, the elbow to flex, and the shoulders to lift up. This sets off a chain reaction that stiffens the same side of the body. The medical term for this whole-body reaction is "activity-dependent tone."  

Once the infant can be put in the upright position, trunk support is the requirement. Compressive garments allow the child to strengthen her trunk muscles in the correct position. They give the child a better sense of where he is in space. The vest allows the parents to "take the therapist's hands home." 

Correct alignment leads to awareness, which is just as necessary in the toddler and young child as it is in the infant. If the hand is not in view, the brain will forget about it. If the hand is not supported in a position of use, the child will not use it. Once the child knows about the hand, the child can use it to develop new skills. This concept is not complicated: The brain pays attention to what it is aware of, so the most important task is to facilitate awareness in the best possible alignment. 

Water exercise

I know of no other form of therapy that is better for all-around strengthening and improving cardiovascular fitness in children and adults with a neurologic problem. Tone increases as the child moves against gravity, and it decreases when he is in a gravity-reduced environment. For toddlers and young children, water is a fun-filled play environment where they can escape from the negative pull of gravity.

Just about any flotation device that holds the child's body upright will work in the young. Traditional life jackets do not work as they tend to keep the child at a backwards angle to keep the face out of the water. The idea is just to support children upright in the water and then encourage them to move. It will take a bit of time, but it is a novel challenge and they will eventually discover how to activate their muscles and fire them reciprocally. 

On land, in gravity, the bully spastic muscles dominate, but in the water the muscles quickly learn to relax and work cooperatively. I have seen great results, even in children with complex forms of cerebral palsy like athetoid quadriplegia. 


If the child is given adequate bracing early, the tone in the legs can be dramatically reduced. The most commonly used lower-limb brace is the ankle foot orthotic. Unfortunately, a survey by the American Orthotic and Prosthetic Association discovered that the average age for this brace to be prescribed was three to four years old. At this age, in most children with cerebral palsy, the ship has sailed. Using AFOs early still gives the supple foot support in the correct alignment and inhibits the spastic reflex loop. But they have to be used consistently, whenever the child is upright, to have this effect.

The take-away lessons are simple: The brain learns from the body. We have to provide the needed supports so that the child learns to move well from the start. Once a maladaptive brain or body habit is established, it is hard to replace with a better movement pattern. Function allows form; even peak-performance athletes wear supportive garments and orthotics to help their bodies maintain good form. 

What do in the middle years

By the time a child is referred to a cerebral palsy center for therapy, he has a well established movement pattern. The negative feedback loop is in place with wired-in circuits in the brain and well-practiced maladaptive movement habits in the body. Yet there are proven therapies, including surgery, that can help children learn new habits of walking and moving.  

Maintain upper-limb alignment

One of my favorite research trials used a simple experimental design that tested the hand function of a group of four-to-eight-year-olds with hemiplegia. It measured just how often the hand on the side of the hemiplegia was used as an assist in tasks such as holding a paper, while the other hand cut it with scissors. When a hand splint was on, there was an immediate and extremely significant improvement.

If the hand and wrist are in good alignment, the child is better able to use the hand, and if she uses it, we now know that those atrophied, disused parts of a brain have a chance to wake up and be useful. But, without use, there can be no persistent change. Relatively inexpensive wrist and hand splints can provide good alignment in a child with a good range of motion in the joints. If the spasticity habit is too well established, medications like Botox injections can tone down the tight muscles and serial applications of casts can restore normal joint movement in most cases. 

Gait training

In most cases, with established spasticity, the child will need to have one or more effective treatments for spasticity to allow more normal movement before any type of leg brace is likely to work. In children with severe spastic diplegia, affecting both legs, neurosurgeons are interrupting the negative feedback loop with selective dorsal rhizotomy therapy as early as in two-year-olds. Botulinum toxin is approved at two years as well.

Additionally, some innovative orthopedic surgeons have developed relatively non-invasive surgical procedures to help correct alignment in the early years. Selective Percutaneous Myofascial Lengthening, also known as SPML or PERCS, is a day-surgery procedure that has been shown to help interrupt the progression of muscle and tendon tightness in the leg.

Replacing habits

Replacing habits with new ones at any age is hard work, and requires focus on one goal at a time. This is how humans learn. I have used an athletic approach to the treatment of CP for years, and I've found it helps. To start with, whether you're a world-class athlete or a seven-year-old girl with CP, you need a goal—like walking independently. Then you need to break it into short-term goals that are measurable, so that everyone can see the progress and update the programs as necessary. All the therapists involved in the care of the child should be working toward the same goals. 

All the research in cerebral palsy supports the concept that targeted, intermittent, intensive training gives the best chance of improving the level of performance. Think of the change in performance achieved at a hockey, golf or tennis camp. One, two, or a few weeks of focused intensive work on a goal that is important to a person creates change. And with change comes motivation.

There are techniques that have been proven to help children with CP learn to cast off their bad habits and reach their full potential for better movement. Water exercise with a Wet Vest, for instance, allows children to integrate and actively participate with able-bodied peers without damaging their bodies. Hippotherapy, riding a horse, is another good example of child-active rehabilitation that is a promising intervention. It is also important to recognize the role of adapted sports programs like BlazeSports or AccesSportAmerica that challenge the child to achieve new goals in social integration and improved fitness and health. Novel, challenging tasks spark neuroplasticity.

How teens can make new habits

The teen years are the second peak of neuroplasticity. Most of the change is in maturation of functions and improvements of the interconnections between different brain areas. Their frontal lobes, the centers of higher cognitive function, are coming online. This means that teenagers start to develop their own opinions and can be motivated to work hard for a distant goal. They can now access new parts of the brain to improve both motor function and speech. This period is a prime opportunity to work around established maladaptive habits. 

Managing spasticity in an older child or a teen is now possible, and several promising options are available, including botulinum toxin, selective dorsal rhizotomy, the Baclofen pump, and various orthopedic surgeries. Each of these interventions has been shown to be effective in research trials. Surgeries have completely changed the outlook for older children and adults who did not have their spasticity and bodily distortion controlled earlier in life. 

"I actually like working with older kids because at some point they become personally invested in what they are doing," says physical therapist Christine Egan. "It is not somebody else wanting them to be better. It is more of an internal motivation. Not doing it for Daddy, or whatever."

For most teens with CP, it is not too late to get better. They have a great opportunity to grow and heal while their brains and bodies are growing at an extraordinary pace. They need a new type of therapy based on an athletic model. Doing more of the same old, same old but harder will not work. They need measurable, achievable short-term goals and a rigorous training schedule that is both challenging and, more importantly, fun. 

You can read more about Dr. Pape's work—and check out her wonderful blog—on her website and buy the book here. If you haven't seen her wondrous TEDx talk, watch it here.

Adapted with permission from The Boy Who Could Run But Not Walk by Karen Pape, MD, with Jonathan Webb © 2016, Barlow Book Publishing Inc.

Wednesday, September 28, 2016

Breaking: Special Needs Mom's Head Explodes

Although not long ago I claimed that June is the cruelest month of all, I have been fully reminded of just how intense September can be. And so, I'm re-sharing this post I ran a few years ago. I need the t-shirt: I survived back-to-school season. You?  

Unsubstantiated reports are widely circulating that the head of a special needs mom has exploded.

At the scene of the incident, in a local Michaels store, bystanders were shocked to see an astounding amount of information shooting out of the head including contact info for dozens of doctors, therapists, sitters and the special needs school district coordinator; her child's weekly schedule of therapies; data from seven years' worth of IEPs; insurance policy numbers, the claim P.O. box address and all the bills she'd submitted but hadn't gotten reimbursed for; the longest to-do list in the history of mankind; an equally long list of stuff she never did get around to; assorted medical jargon; details about developmental milestones she read in those "What To Expect" books years ago before she forced herself to stop reading those books; names of various adaptive programs; special needs financial planning tasks she was in denial about; a list of exercises the therapists recommended she try with her child; a list of apps the therapists recommended she download; a list of products the therapists recommended she buy; a pervasive vague feeling she'd forgotten to fill out an important form; volumes of guilt; various memorized recipes from Lipton soup boxes; plus the phone number of her best friend from third grade.

"She was standing there in the aisle mumbling something about finding a chunky kind of crayon recommended by the occupational therapist when her head exploded," said a bystander. "Nobody could believe it but then we figured it was maybe some kind of store promotion."

The body continued to function, reaching for a cell phone to dial in a prescription refill. It then wandered off toward the modeling clay aisle.

Authorities are still investigating the matter.

Image: istock/Obaba

Tuesday, September 27, 2016

Things only a parent of a child with disability would notice

This video of Ben laughing has been making me laugh for days. Sabrina was entertaining him by dropping ice cubes on the floor. Every single time I watch it, I get a lift. I actually watched it several times in the midst of the debate last night when my blood pressure shot up. 

Besides Ben's hearty and infectious chuckle, I also adore how nice and relaxed his hands are. This isn't something most people would notice, unless you've had a child whose hands were usually clenched as a baby, as Max's were. It totally panicked me and Dave, since we knew the tightness was a sign of cerebral palsy.

Max was likely going to have CP because of the stroke he'd had at birth but still, Dave and I were in between denial and pure terror. When we'd go to a mall, we'd stare at other babies passing by in their strollers and stare at their hands. Whenever we'd spot one whose hands were closed, one of us would excitedly point it out. In our minds, it meant that maybe Max wasn't doing so badly after all and that other babies were going through the same thing.

In our hearts, though, we knew that Max's hands weren't at all like other babies' even though they looked just as deliciously pudgy and dimpled. Mostly his hands were fisted, even as he neared a year old. It made grasping toys and finger foods hard or impossible for him. He couldn't put objects into his mouth, one way babies explore the world around them. Even when Max started crawling, we didn't have to babyproof very stringently because there was no danger that Max would swallow errant objects; he didn't have the fine-motor skills to grab them.

And so, I've marveled at Ben's hands. They seem miraculous. We do not need an occupational therapist to show me how to unclench and massage fingers, and to rub the tight area between the thumb and forefinger. We do not need an occupational therapist to help the baby pick up a ball, a spoon, a block. We do not need an occupational therapist to show the baby how to press a button.

What's strange to me about these thoughts is how much of a disconnect they are from the awesomeness of Max, and how much I revere this boy. I don't sit around thinking that I wish he didn't have challenges with his hands or otherwise—I accept him for who he is. I typically don't sit around wishing he didn't have cerebral palsy, although there are times when I curse it. But we went through a certain hell during the first year of his life, and I don't think I will ever fully get past it. Having Ben is bringing back a lot of those memories, and it makes me grateful that Ben is developing as he should.

Ben is really expressive with his hands. He has a way of wriggling them around when he is excited about something, especially when he's eating.

We call them "happy hands" and when he twirls them, I feel really happy, too.


Monday, September 26, 2016

I will not worry about his future I will not worry about his future I will not...crap

I had my list of observations and questions to run by the orthopedist during our visit last week, starting with: "He's tripping more often."

Max has taken a number of spills in recent months. Although his arms lack the reflexes to shoot out and cushion his fall, he somehow tends to fall to the side and in slow motion so he hasn't really hurt himself. Still, I've been concerned that he will.

Max did not want me to bring up the falls to the doctor. He tends to put an "Everything's great!" spin on life, which is generally a good thing but also means that he doesn't want to talk about stuff that goes wrong. I told him we had to discuss it, especially because firefighters can't fall when they are on the job.

Max breezed right into the hospital where the doctor's office is. "Wrong name!" he informed the receptionist who checked us in; her computer listed "Max" and not "Fireman Max." He requested that she change it. When we got to the waiting area, I asked the nurse if she could call Max into the exam room as "Fireman Max." I no longer feel sheepish about making these requests; I say them with a totally straight face.

Soon enough, Fireman Max was called in. The doctor took off his foot braces, felt his feet and had him walk around. Dr. T. noted that Max's right foot, the one that turns in, looked the same as it had four months ago. That was good enough news; I wasn't expecting it to get better. The spasticity is what it is. He recommended that Max sleep with his right foot brace on at night.

Max's back was straight, the doctor said, also a win. "If he doesn't have spine curvature now, is that a pretty good indication he won't get scoliosis?" I asked. The doctor said yes. A happy dance ensued in my head.

Then we talked about the tripping. "Max might need tendon surgery at some point," the doctor said, and my heart sank. I know that was a possibility for him. People with cerebral palsy sometimes require tendon lengthening or cuts to alleviate tightness.

"In your experience, do children with Max's level of CP typically require surgery or not?" I asked.

"Every child is different," he answered, just as I knew he would. He noted that we wouldn't know for a while. He said that Max would have to be off his feet for four to six weeks after having the surgery.

WHOOOOOOOOSH. That was my brain fast-forwarding to the future. What if Max's foot got worse? What if he did need the surgery? Would it be painful? How would we keep him off his feet for four to six weeks, or out of school? Would it ultimately help?

Max brought me back to reality, because he was attempting to log into the doctor's computer—no doubt, to make sure his name was in the system as Fireman Max.

"Max, you can't use the doctor's computer," I said as he pressed the alt and F10 key to reboot it (impressive).

As we drove home, I thought about whether or not Max's right foot would keep turning in more and the potential for surgery. As I lay in bed at night, I pondered it.

You'd think that after all these years, I would know better than to ruminate over what I can't control. And to some extent, I have improved. I was steeped in worries about Max's future when he was a baby, to the point where I'd read and reread the same chapters in What To Expect: The First Year hoping that I would find one thing—just one little thing—that he was doing on time. The obssessive worrying has abated as the years have passed. Yet at times, I can't help myself: I peer into the future and worry about what could be.

The very next day, we had our annual appointment with Max's wonderful neurologist. After we'd updated him on Max's progress, I asked for a better understanding of where Max was cognitively.

Dr. C. went through a series of questions: Could Max understand dates and schedules? Yes. If we took Max somewhere—like a museum—and focused on, say, a painting, would Max stay tuned in or would he start talking about fire trucks? He'd stay tuned in—and at some point, also ask if there was a nearby fire station. And would Max remember the next day what we'd told him about the painting? Yes. Did Max care what other people thought of him? Well, to some extent—he wants to look good lately, although he doesn't seem to get the niceties of social interactions (we told him about Max's tendency to point out baldness).

And then, the doctor asked a big question: Did Max have a good data bank of knowledge?

And I couldn't wholeheartedly say yes. Max does talk about a growing number of different topics. But even with his beloved fire trucks, he doesn't know that much about their parts, inner workings or history. I've gotten him books packed with details about fire trucks, he just hasn't taken an interest.

The doctor talked about bolstering Max's working memory. We could start with his favorite fire station and talk about the name of the street it's on, the year it was built, find out how many firefighters work there, etc.

"The more you build up his memory," Dr. C pointed out, "the more active his mind will be as he gets older."

Then I asked my big question: Based on patients he'd treated who were similar to Max, what kind of job might Max have when he gets older?

(See: Sometimes I just can't help myself.)

The doctor gave me a kind look. "I'm not going to answer that," he said. "Because we don't know where Max will be cognitively as an adult, he still has so much potential."

And that was the truth. And yet another reminder to stop looking for answers where there are none.

Friday, September 23, 2016

The Special Needs Blogger Weekend Link-up wants YOU

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: I wish this viral video hadn't made you cry

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, September 22, 2016

The mystery of the stuff that's disappeared in our house

I was pretty sure nobody had broken into our house and stolen my tweezers. But where were they? As I finally got around to tending to my brows the other night, my trusty Tweezermans were not in their usual spot in the medicine chest.

I have been known to leave my cell phone in the fridge and my wallet in the car trunk, but my tweezers always stay in the bathroom. I looked everywhere. Nope: Not beneath the sink, not in our bedroom, not in Ben's room. Sabrina hadn't used them for some craft project. Dave hadn't used them for who knows what.

Weirdly, this was the second pair that had disappeared in the last year. And it was highly unlikely that both had been snatched by some crook in dire need of a good brow plucking.

Our house is hardly tremendous, which makes all the stuff that gets lost in it even more perplexing. A couple of months ago, I ordered some extra boxes of contact lenses online; they are nowhere to be found. I spent close to an hour this summer searching for two tubes of organic sunscreen I'd bought for the kids. Gone. Random gift cards I know I never used: gone. My orange leather business card holder, a tote bag, a cute white blouse, my high-school yearbook, our stepladder, the pint of white paint for touching up trim, the kit for hanging framed pictures, a Post-it with notes from an important doctor appointment which is what I get for writing them on a Post-it: gone, gone, gone.

The caboose part of Ben's favorite toy train is missing, along with a bazillion tiny toy pieces plus the white ladder that goes of one of Max's fire trucks. My favorite screwdriver (yes, I have a favorite screwdriver) has been AWOL for a couple of years now. Gifts I bought ahead of time for people then stored them: Where are you?!

Also: Someone in our house eats pens. Which is the only logical conclusion I can come to, given the fact that whenever I'm on the phone and need to jot something down, there is no pen anywhere.

I am a pretty organized person. I grew up with a loving father who happened to be a hoarder, one reason why my happy place is one in which stuff is neatly arranged—and there. When something goes missing, I feel unhinged, as if I am slowly but surely losing my mind. That feeling is compounded by the fact that when I'm looking around for whatever it is that's lost, I tend to mutter to myself, tug at my hair and occasionally wail "Where is it?"

And I am always the one in our family trying to track down lost objects, because nobody else ever seems all that concerned, although when my eyebrows get out of control everyone's gonna be very sorry. I assume, too, that if something major went missing—say, the coffee machine or our back deck—someone might help me find them.

I don't think anyone is playing a joke on me.

I am pretty sure there is no government conspiracy involved.

I do not believe in the supernatural or ghosts, who typically do not require brow maintenance, although there are online tutorials on using your psychic powers to find lost items. ("Start walking around the area where you think you probably lost your precious item and try to feel a tug in your midsection pulling you in the direction of your lost item. Or you might feel a hot or cold sensation telling you if you're near or far, respectively. You might feel a tingling sensation in your hands when you get close. Don't use your logic. Feel the tugging, temperature or tingle.")

On my list of stuff I wish would get lost: the cardboard box fire truck that has been gathering dust in Max's room, Sabrina's selfie stick, Ben's toy that makes obnoxiously loud animal sounds, all of the underwear with holes and Donald Trump.

I recently went through some of the kids' artwork and homework that I'd stored in our attic. When I opened up one folder, in between drawings of flowers and purple circles I found a pile of bills...dated 2013. Too bad my tweezers were not there, or any of that other stuff.

On the upside: I have yet to lose any of my children in the house. I know the precise location of the box of fancy paper straws and our stockpile of chocolate pudding cups, but if I told you I'd have to kill you. Heck, I even know what's in those two blue bins tucked up in the rafters of the garage (Girl Scout sit-upons and, um, I'll get back to you).

In other news: Have you seen my tweezers?

Wednesday, September 21, 2016

Giving your child independence takes baby steps

The other day, Max told me he wanted to meet some new neighbors. And I had a mini parent crisis.

We were on our porch and he was watching kids playing outside the house down the block and across the street. He pointed at them, waved and said "Hi!"

"You want to go over and say hello?" I asked.

"Yeah!" he said.

He would have needed to cross the street.

"Max, what do you do when you cross the street?" I tested him.

And he dutifully swiveled his head to the left and to the right.

Still. I worried about letting him go alone. I didn't want to stand there and watch him, as I didn't want him to feel like I wasn't confident in him, or sneak-watch him from behind some shrubs.

What to do?

Lately, Max has been acting more independently. This weekend, Dave noticed Ben's stroller sitting outside the back door.

"Did you take the stroller out of the garage?" he asked me.

"No, didn't you?" I asked.

"Nope," said Dave.

Then I realized Max wasn't in the house. That was because he'd gone down the stairs of our deck, opened the garage door with the keypad and took the stroller out—he wanted Dave to take Ben for a walk with him.

I loved it.

When we first got an alarm in our home, I remember the installer telling us that when our child was walking around (I was pregnant with Max at the time) we could set the alarm to ding whenever the front or back door opened, so we could make sure he didn't wander out on his own. For years after, when I'd go to set the alarm, that button stared me in the face. We did not have a child who was able to walk out a door, let alone open it.

Then Max walked at age 3. Last December, he opened the back door for me when I came home. And now, evidently, he could leave as he pleased.

Wasn't this a moment I'd been waiting for—Max going somewhere on his own?

Yes. Except I wasn't ready.

I compromised. Or, you could say, I wimped out. I asked Sabrina to go say hi to the new kids, too. And off she and Max went. And I headed inside the house and willed myself not to try to catch a glimpse of them from the living room window.

They came back within a couple of minutes. Almost as soon as they got to the house, the parents decided there were too many mosquitos outside and shooed the kids in. Because, you know, overprotective parents.

It's going to take baby steps. As in, mine.

Tuesday, September 20, 2016

Mommy you're fat and other thoughts children should keep on the inside

Yesterday, as I sat on the couch typing, Max pointed to my belly and made a rocking motion with his hands.

Oh, lovely: He was asking if I had a baby in my belly.

"No, Max, I don't have a baby in my belly," I informed him.

He pointed at my stomach again.

"Max, are you saying that I look big?" I asked.

He nodded.

I'll just say, I was wearing a tight top and my belly is nowhere near flat by any stretch of the imagination. Well, OK, I'll just say that my gut sticks out, thank you three C-sections and a lack of time to tone up. The three beautiful children I've gotten as my consolation prizes have been worth it. Except when one of them is commenting on said belly.

"Max, sometimes after you have a baby your stomach still sticks out," I said. "But that isn't nice to say."

Max has (obviously) yet to figure out what tact is. That may seem ironic, coming from a boy who has some prominent physical challenges. But Max doesn't seem to care or be aware of how others perceive him. And so, it follows that he doesn't get how what he says about people's appearances can affect their feelings. Even as he's coming into teenhood, complete with the 'tude, aspects of his emotional development are still immature.

There have been times when we've been out and seen a little person and Max has laughed (out of earshot, thankfully). I've explained that people come in all sizes and that it is not polite to comment about how people look. It hasn't stuck.

A couple of months ago, Max and I bumped into the elderly guy next door to us. His arm was in a cast; he'd fallen down stairs. As we stood on the sidewalk and chatted, Max had a question for him:

"Where's your hair?"

He gestured up toward the guy's hair.

Now, I knew what Max was saying but luckily this guy didn't. So I said, evenly, "Yes, Max, he is really lucky he didn't hurt his head!" And then I grabbed his arm and made a fast getaway.

This weekend, it happened again. We had guests over, including a friend who is short on hair. As we sat at the kitchen table, Max pointed to him, said "No hair!" then touched his own hair. There was no mistaking what he was saying.

This guy has a great sense of humor and he isn't easily embarrassed, so he laughed if off. I said, "He's still figuring out there are thoughts you keep on the inside!" When Max and I spoke about it, I told him, "That's not nice to say. You wouldn't like it if someone said to you, 'You drool!'" That may sound harsh, but I wanted to find a relatable way to explain the situation. Putting yourself in someone else's shoes can be an effective means of helping children understand other people's feelings.

Max has a good emotional IQ around us—he can readily tell when I am upset over something, for instance, and he will try hard to cheer me up. "Are you happy?" he'll ask. I hope that over time, the empathy will extend to more people and he'll grasp that commenting on others' appearance isn't nice. For now, it's a work in progress, although Max seemed to have a twinge of doubt as we headed upstairs to get ready for bed.

"You're nice, Mommy!" he said. And then he patted my belly.

Monday, September 19, 2016

I wish this viral video hadn't made you cry

A teen wakes up, eats breakfast and goes to school. He attends classes, chats with friends, eats lunch. He's a handsome guy with a big smile who's popular at school. In the afternoon, he manages the school's football team. Then he goes home, does homework, maybe watches TV, goes to sleep.

Would you call this teen an inspiration? Likely not. He's just a teen doing what teens do.

Now, say that you know that this teen has cerebral palsy. Would you call him an inspiration? A whole lot of people would.

This is on my mind because of a story and video that's going viral: On September 9, Fossil Ridge High Homecoming King Max Atkin handed over his crown to longtime friend K.L. Norwood. The football team manager, K.L. had also been nominated to be King. He happens to have cerebral palsy. "I think it should have gone to the person who positively uplifts the school and everyone else around him the most and that person is K.L., for sure," Max told local Dallas news station WFAA. The crowd chanted K.L.'s name at halftime.

Every fall and every prom season, variations of this story make headlines. Sometimes, the story involves teens nominating peers with disability to be homecoming kings and queens. Sometimes football players allow a peer with disability to play during a game, or enable him to make a touchdown.

Like other special needs parents, I have mixed feelings about all of this. If I'd never had a child with special needs, I'm sure that I would have also only felt the warm-fuzzies when I saw this video. Except I do have a child with special needs. And videos like this make me ache for true inclusion for him.

Thanks to social media, millions of people see these sort of videos and read these stories, often declaring them "heartwarming." They choke up and they cry because they are taken by how "kind" students are to those with special needs. They are glad for the "good deed," which might restore their faith in humanity. But these reactions are based on perceptions that have long plagued people with disability: that they are unfortunate human beings who deserve pity gestures, not parity.

To be sure, students showing the love for a peer with disability is a great thing. Max Atkin is one of the good kids of this world. My friend Maureen, who first sent me this video, noted that these kids are "teachers" who show others that everyone deserves to be celebrated for who they are. And no doubt, these happenings bring much bliss to the recipients. "It was absolutely terrific," K.L. said.

As parents of kids with special needs, of course we want them to be happy. And of course we want their fellow students to treat them well. Yet we also very much want our children to be included in life every single day. To naturally and organically be one of their peers, not an "inspiration" just because they are living their lives. And so, I worry that viral videos in which youth with special needs receive super-special treatment give people the wrong idea. I worry that people click, watch, cry and move on, never realizing or acknowledging the lonely and even alienated reality of our children's lives off the fields.

I realize that expressing dubious reactions to stories about teens with special needs who become king or queen for a day may be perplexing, even annoying, to people. What exactly do you special needs parents want, anyway?! You get upset when people dis or exclude your kids, and you get upset when they are treated like royalty! Get a grip! Quit getting so up in arms about everything!

Please understand: My reactions to these viral stories are based on my experiences raising a child with special needs, and my concerns stem from my longings and dreams for him. Max does not attend a general public school so I can't comment on that but in every other aspect of life, inclusion has not been the norm. Sometimes, it is difficult for people to simply acknowledge his presence. Sometimes, people don't know how to behave around him or what to say. Sometimes people stare. Sometimes kids snicker. Rarely have they invited him to play.

Everyday acceptance and inclusion are the dreams I have for my son. I don't wish for him to be put on a pedestal or revered; I'd like him to be treated like other guys his age. Just another teen who may have some visible challenges, but at heart is still a teen.

Happily, K.L. Norwood does seem to be a regular part of the high school crowd, as far as I could tell when I scrolled through photos on his Twitter feed. Joshua Michael Richardson, a teacher at Fossil Ridge, commented on ABC's Facebook page that students are generally accepting and inclusive:

These young men represent over 2,000 adolescents at my school who are bursting with character, who are honest, and show genuine compassion for one another every day. We don't really have bullying problems or prejudice. We are diverse, from every ethnicity you can imagine, to every religion and every socioeconomic status. They grow up learning to treat one another with dignity and respect, something so many people elsewhere should learn to do. These kids are learning and achieving great things. These two and every kid they represent at FRHS encapsulate the great things that are happening at our school. Hats off to Max and KL. Two fine young men. So proud of them and all my kids.

Yes, exactly: Two fine young men.

True inclusion of children and teens with special needs doesn't make headlines or crop up on Facebook feeds. It means everyday mingling and interacting: Kids playing with them at playgrounds, sitting with them at lunch (assuming they'd like that), joking around with them, inviting them to events and parties. It means joining together in inclusive sports programs and extracurricular programs that level the playing field. It means recognizing that the football team manager with cerebral palsy has abilities, just as the football hero does.

And so, as people feel all the feels for these viral videos, I'd like them to know that grand gestures are not enough for our children and they are certainly not the answer, even if these students mean to do right. Nor are they a happy ending, although perhaps they can help launch conversations and awareness about the ideal: Students who treat those with disabilities as true peers every single day.

Also see:
How parents can talk to kids about ones with special needs
What I'd like you to say to my kid with special needs
8 ways to include kids with special needs in sports

Top image: Twitter

Friday, September 16, 2016

The Special Needs Blogger Weekend Link-up: post time!

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: Sometimes our family life is like a sitcom and Speechless nails 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, September 15, 2016

Sometimes our family life is like a sitcom—and Speechless nails it

A fire truck whizzed by as I drove Max to an occupational therapy appointment yesterday afternoon. "Where's it going?" Max asked. "I'm not sure!" I said, but that wasn't true: I knew it was headed to our street. A tree had just fallen, downed a power line and knocked out the electricity. If Max had a clue the fire truck was by our house, though, he would have insisted I turn the car around and buh-bye therapy. These are the perils of raising a wannabe firefighter.

As Max did fireman stretching exercises with a "fire hose" (aka a red rubber tube, thank you genius OT) the texts started coming in. Our babysitter sent a photo of the fire truck. Sabrina zapped photos of the fire truck. Her friend's mom sent a photo of the fire truck. Everyone wanted Max to see.

Suddenly, I was having a crisis. Should I pull Max out of therapy and go home? I mean, it's not every day that a ladder fire truck—your child's favorite one, no less—is sitting outside your house. But, bad mom that I am, I let Max finish the session. He squealed when we got to our street and saw the fire truck.

Max couldn't have looked any happier at the scene of the emergency. He had me snap photo after photo as concerned neighbors hovered nearby, discussing the damage and when our power would be restored.

Next, Max dashed over to the firefighters. "Hi, Max!" they said. "We didn't know you lived here!" Because of course, they knew him. He posed for more pictures.

"Fireman Max, you need to come inside and do your homework," I finally told him.

"No! Job!" said Fireman Max. As in: It is my job to be here so back off, Mom.

Sometimes, the situations I find myself in with Max are straight out of a sitcom. I'm sure there are plenty of special needs parents who feel the same. And now, there's a sitcom that's laughing (and calling b.s. and taking a stand) right along with us: ABC's Speechless. It's the first TV comedy to depict life with cerebral palsy. People will be getting yet more insights into CP thanks to the show's partnership with the Cerebral Palsy Foundation (CPF). Speechless premieres next Wednesday, September 21, at 8:30/7:30c. I'm hoping it's a game-changer for Max, others with CP and the disability population as a whole.

The show stars Minnie Driver as Maya DiMeo, a mom of three. Her oldest, JJ, (Micah Fowler) has cerebral palsy, and Maya stops at nothing to get him the help he needs. There are many relatable moments throughout the first episode, which had me laughing. People gaping at her son: Oh, yah, I know all about that. People acting awkwardly because they're not sure how to behave around someone with disability: Yah, I know about that too. People surprised that JJ deserves to be treated like any other young man: Oh, yah, #beenthere.

As the mom of a teen with cerebral palsy, I'm grateful to see a teen with CP (played by an actor with CP!) presented in such a real way, with none of that dippy, pity-filled, TV "After School Special-ness," as producer Scott Silveri told the L.A. Times. "At its core it's a show about being different and not apologizing for being different and embracing who you are."

One of the reasons Speechless is so true to life is because it is informed by people with disability and their family members. Silveri, who produced Friends, has a brother with cerebral palsy. Experts from the Cerebral Palsy Foundation and CEO Richard Ellenson—dad to Thomas, a 19-year-old with CP—are providing guidance. And then of course there's Micah, who emailed me yesterday. He's helped writers with technical details, like how he operates a wheelchair, and shared stories about growing up that have been used in the show.

I'd asked if he particularly related to any scene in the first episode. He mentioned the one in which Maya gets outraged that the only ramp into JJ's school is one used to transport garbage: "The scene actually happened, just as you see it in the pilot! My mom was trying to get me in the front door of the school and my powered chair couldn't make it over the lip of the door jamb. My mom was all frustrated and was complaining about the situation to the door monitor. She asked, 'Who do I need to talk to about this to get it fixed?' The door monitor quietly pointed to this man behind me, in a suit, who had seen the whole thing. Turned out it was the superintendent of the school district! He was all apologetic and by the next week they'd built up the entryway so I could roll smoothly into school! The school district was awesome, very accommodating, and took care of it right away."

Richard Ellenson has his own material to offer based on raising Thomas. Recently, he put together notes for Speechless about dating and people with disabilities. "I was thinking of an interview CPF had done just that day with a fantastic twentysomething guy with dysarthric speech and a twentysomething woman who had difficulty walking," he says. "The stream of insights that the Foundation has gathered allows us to help the writers wend their way through these incredibly complex issues. But I was also literally carrying on a conversation with my son, who was using his iPad, to tell me about a girl he liked and trying to figure out whether he had a chance or not."

Bottom row: Micah Fowler and UCP Scientific Advisory Council member Dr. Eileen Fowler (no relation). Top row, from left: Micah's mother, Tammy; Richard Ellenson; Speechless producer Scott Silveri; and Micah's father, David.
One big hope Micah has expressed for Speechless: that it helps people get to know JJ as a "very normal" person (disability? What disability?), and that it brings awareness. He is all too familiar with the fact that many people don't understand what CP is. "Not very long ago, I had a substitute aide for a day," he recalls. "She was a pretty good looking young lady and as we got into the elevator she asked me, 'Micah do you need me to help you clean out out you colostomy bag?' I was like, 'I don't have one of those...but thanks anyway!'"

As part of its partnership with Speechless, CPF will post related content immediately after episodes end. "Laughter makes it OK to talk about cerebral palsy," says Richard. "Speechless will get the conversation going, and the Foundation will give the information to have a conversation about the more detailed aspects." Following the first episode, CPF will present an overview of CP; subsequent weeks will address augmentative communication and inclusion. The Foundation will also be introducing audiences to a diverse range of families, as each one of ours is its own awesome (and challenged and on occasion, bonkers). You can sign up for the content here. (This collaboration is one of several innovative and impactful CPF programs, including the Women's Health Initiative, Design for Disabilities and Kinect).

I'm psyched to watch the show with Max. There are sure to be teachable moments, like JJ's version of giving the finger (a life skill not usually covered by OTs). Oh, man, I have so many ideas for episodes. See: As Maya waits on endless hold with the insurance company, she decides to drive over to their offices and confront them! See: Maya asks for an extra speech therapy session during the IEP meeting; when she is told her son doesn't need that, she opens a door and her team of experts and advocates attacks! See: A youth program refuses to accommodate JJ and Maya goes all social media on them until they beg forgiveness and kiss up to him!

See: Max goes to sleep asking if another tree could fall down tomorrow so the fire truck will return! Oh, wait: That's my actual life.

Wednesday, September 14, 2016

Suddenly, he's got teen 'tude

Sabrina mastered the eye roll years ago, along with that tone of voice that implies she knows everything and you don't. Max, he's never given me attitude, until lately. And as with all his developments, I'm psyched. Er, mostly?

Like many teens, Max has been caring more about his appearance in recent months. He is into hair gel, long showers and, as of last week, minty-fresh toothpaste. Gratefully, he is still not into brand-name clothes or sneakers that require you to take out a second mortgage, unlike some siblings who shall remain nameless.

And now, he has acquired that world-weary tone of voice. "I know!" he regularly tells me when I ask for something, although he does it with a smile.

Also: He's got a crush. I don't think he'll mind if I mention her name, especially since you may already know her.

The other week, our family attended Arthur Ashe Kids' Day at the U.S. Open as guests of Emirates Airline. There were a whole lot of activities, including face-painting (Max got a fire truck on his hand), balloon artistry, juggling and one memorable event in which Max rallied with a tennis pro.

Afterward, we watched a show sponsored by Radio Disney. Suddenly, Max squealed. Laura Marano, of Austin & Ally fame, had stepped onto the stage; she was hosting. And when I say that Max did not take his eyes off her any time she came onto the stage, I am not exaggerating. He kept asking if he could meet her. Given that we couldn't, we photo-stalked her instead.

And then, Max was home sick last week. He wanted to watch a movie. He said the name repeatedly as he pointed to his head. I had no idea what he meant until he typed it out: Bad Hair Day. Starring, wait for it, Laura Marano. He relished every minute of that movie. Hey, Laura Marano, I know a nice boy for you!

In other news, I'm getting on Max's nerves, as moms of teens have a tendency to do. "Chug! Chug! Chug!" I chanted to get Max to down some water when it was hot the other day. He looked at me.

"I'm annoying, right?" I said.

"Yes!" he agreed.

"Say it: 'uh-noy-ing!'" I requested, because I am always trying to get him to enunciate words.

Max said some semblance of the word.

I'm enabling his 'tude? What?!

Tuesday, September 13, 2016

The healing powers of baby brother therapy

"Fireman Max, can you show Ben how to do 'How big is Benjamin? SO big!'" I say, stretching my arms upward.

For weeks now, we've been trying to get Ben to do this, the baby equivalent of teaching a dog to give you his paw. Ben could care less. But, bonus, we've been getting Max to do it. He is lifting his arms upward and raising them high, a movement that does not come easily to him.

Baby Ben has come in handy for all sorts of occupational, physical and speech therapy.

"Fireman Max, tell Ben how to say 'Mommy!'" I say.

"Fireman Max, tell Ben how to say 'Daddy!'"

"Fireman Max, can you show Ben how to press the buttons on that toy?"

"Fireman Max, can you pick up Ben's car and give it to him?"

"Fireman Max, can you pick up Ben's spoon?"

"Fireman Max, can you bring me Ben's bottle?"

"Fireman Max, can you roll the ball to Ben?"

"Fireman Max, show Ben how to do 'Open, shut them!'"

And Fireman Max happily does all of this (as long as I don't forget to call him Fireman Max).

Therapists always tell you to naturally work therapy into your child's daily activities. I have tried mightily over the years. When Max was a baby, we'd bicycle his legs whenever we changed his diaper to help loosen them up. When he was a toddler, we'd get him to dump laundry into a basket and fold it (sadly for both of us, that habit never took). As he's gotten older, Max has done everything from setting the table for meals to retrieving my phone whenever I misplace it in the house, which is pretty often.

Lately, though, we haven't been trying as hard to get Max to do stuff. It's partly because we are content with who he is (this is good) and partly because we have gotten complacent (this is not so good). I keep meaning to ask his therapists to give me more ideas for how to work therapy into his days but I keep procrastinating since I have about as much on my plate as I can handle right now.

Then came Ben. And BenTherapy (trademark pending!) has been just the thing. Max is so eager to help and teach him. He savors the role of being the older and wiser brother. "No, Benjamin, no!" he'll say with a smile after Ben tosses a toy off his highchair tray yet again and Max hands it back to him. And, I think, Max is psyched to show off his capabilities.

BenTherapy does me good, too. I watch Max doing stuff he couldn't do as a tot—picking up objects, grasping a ball with both hands, isolating his pointer finger, pressing buttons, bending down, saying words, raising his arms over his head—and it is healing.

Monday, September 12, 2016

Our kids with special needs have got talent

Max and I were standing in the back of a crowded room when I started thinking about his talents, because of what a dad said.

We were at the bar mitzvah of Nathan, a friend from camp. His dad was making a speech that touched on Nathan's growth and progress. Nathan has autism, and an interest in lights and electricity. For the camp talent show, Nathan demonstrated how to place fluorescent bulbs in a light fixture. Max had enthusiastically sung "Try Everything," from Zootopia, completely with an impromptu bootie shake to the crowd.

Nathan's father spoke of his son's fascination with electricity—which, he clarified with a smile, Nathan can now handle safely. He noted that the room we were in had many, many people who were older than Nathan and, in fact, many people who were vastly older than Nathan. And you know, he said (I'm paraphrasing as best I can recall), "I'll bet there is nobody else in this entire room who could install a fluorescent light fixture."

I'll bet that was a lightbulb moment for many people in that room.

When you hear the word "talent," it's typical to think of exceptional athletes, musicians, singers, actors, artists and dancers. That includes people of all abilities, of course. Artist Dan Keplinger has cerebral palsy; 7-year-old artist Iris Grace has autism. Dancer/choreographer Alice Sheppard is in a wheelchair. Lauren Potter played Becky on Glee to perfection. Oh, and then there's the entire Special Olympics.

Nathan has a gift for electronics, unique in that roomful of people. Max has a distinct gift, too. He knows just how to perk up anyone's mood: with a gesture, a look, a sound, a smile. It is a talent. People are drawn to him like moths to a light.

Max has shown me other permutations of talent, too. Exceptional doesn't have to mean in comparison to anyone; you can be exceptional in your own right. Max has an aptitude for singing. Not the kind that wins Grammys—a unique kind that is expressed with passion and enthusiasm (here he is belting out Let It Go). Who knows what other talents have yet to emerge. For one, the tap-dancing lessons will be starting up again this fall.

"We are each gifted in a unique and important way. It is our privilege and our adventure to discover our own special life," said Evelyn Dunbar, a British artist and teacher. When it comes to our children, it is our privilege and adventure as parents to discover their talents—and to enable others to see them, too.

Image: Flickr/K. Lizzie

Friday, September 9, 2016

The Special Needs Blogger Weekend Link-up: Share a post! Share two!

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 child with Down syndrome on the cover of Parents magazine

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, September 8, 2016

A child with Down syndrome on the cover of Parents magazine: win!

Parents magazine is up to good, once again. Gracing the cover of the October issue: Amanda Booth and her son, Micah, 2. A real-life model, this mom is beautiful. So is Micah, as children on magazine covers tend to be. Micah has Down syndrome, which is not necessarily important to mention except that HE IS ON A MAGAZINE COVER.

A little boy with Down syndrome on the cover of a national magazine is a rarity, let alone one whose Instagram description reads "Long hair, don't care." You can count on one hand how many times this has happened: The now defunct BabyTalk had two covers featuring babies with DS, one in 2001 and one in 2007. Sarah Palin and her son, Trig, appeared on People in 2008.

You'd think that these days, given how far we've come with understanding disability, including children with special needs in magazines, on websites, on TV, in movies or in whatever media would be the norm. Sadly, it isn't; clearly, we still have a long way to go in terms of acceptance.

Parents has an admirable recent history of inclusion. In 2013, the cover featured Emily Keicher, a 3-year-old with spina bifida and in 2014, siblings Chloe and Daniel Molina, ages 3 and 5; Daniel has autism. And now, Micah, on the magazine's 90th anniversary issue. It's yet another way to show people that children with special needs are as adorable as any children, and worth celebrating as much as any children.

Amanda, who's appeared in ads for Target, Old Navy and Lancome, blogs at The Beard & Bump. Like any proud mama, she regularly shares pics of her son on the Instagram account Life With Micah (the kid's already got close to 51,000 followers).

The editor of Parents, Dana Points, is a friend and former colleague, and I asked her how this came about. Photo director Lily Alt had shown Dana a photo of Amanda with Micah as a baby; smitten, the two decided to look for an opportunity to put him on the cover. Enter the magazine's 90th anniversary. As Dana says, "We wanted to do something special for the anniversary, but not in a self-congratulatory way—more a celebration of our readers and their lives."

The issue features an article about life lessons from parents of kids with special needs, with input from Amanda and other moms. I spoke with writer Julie Lythcott-Haims about learning to appreciate your child's assets, and not worrying about what others think. The Parents to Parents section highlights the diversity of American families today, not just in terms of race and ethnicity but family structure and living arrangements.

As with the other Parents covers featuring children with special needs, Dana doesn't seem to be making a big deal about it (even if I am and others will, too, because it is a big deal). "My goal is to incorporate children with special needs into the world of the magazine just as they are incorporated into the real world—to weave them in, often without fanfare," Dana says. Over the years, Parents magazine has also featured children with special needs as models for articles.

"With 14 million readers in print and still more visiting our web site and social feeds," Dana continues, "we have lots of parents who are somewhere along the special-needs journey, at different points in the process of learning the life lessons Julie Lythcott-Haims shared in the story. And we have a lot of parents of typically developing kids who could benefit from those same lessons."

Amanda and Micah serve as ambassadors for Changing the Face of Beauty, a nonprofit that's dedicated to integrating individuals with disability into general advertising and the media. Micah's face staring out from newsstands and coffee tables around the country isn't just a win for children with Down syndrome and other special needs. It's a win for everyone. Because the more children of all abilities are included in life, the more of a diverse, rich and beautiful life it will be.

Wednesday, September 7, 2016

School year success for children with special needs: 5 key tips

This guest post is from longtime online friend Dani Gillman, mom to an 11-year-old daughter (who happens to have autism) and a two-year-old son (who, she says, “doesn’t appreciate the value of naps.") Dani and I originally connected when she wrote the blog I’m Just That Way and That’s Me. Dani referred to her daughter as Little Bird—the inspiration for Birdhouse, the highly acclaimed, Detroit-based startup empowering parents raising children with special needs to learn more about them through a behavior-journaling app for iPhone, Android and the web. Which makes Dani a bona fide mom expert and an expert expert! Dani is real and funny and super-smart, so give a read. 

The start of a new school year can be a very stressful time filled with worries about what to expect: Will the teacher be good? Will the kids be kind? Will the work feel like it’s too much? And that’s just the nerves of the parents! Our last teacher left very abruptly just as my daughter Brodie got used to her and let her guard down enough to let her in. In fact, we haven’t yet been assured that the therapists and support staff she’s used to will be returning either this year.

Then there are the concerns about whether the IEP will be followed, whether the accommodations will be enough and whether a child will be bullied (GULP). With so much out of our control and up in the air, it helps to create structure that we can count on. These are some simple tips that have worked for me and other parents I know.

1. One word: ROUTINE.

As unpredictable as school can be, it can help a student to feel comfortable knowing there’s predictability at home, especially when he returns home. So establish firm routines for different parts of the day. At our house, we set out clothes the night before, and make sure shoes are by the door. I do my best to have the basics of lunch packed, letting Brodie pick one or two items to include. This not only gives her some control, but also helps set her expectations about what’ll be her lunch box. My daughter has a tough time making choices and no one makes good choices on an empty stomach anyway, so we plan out our breakfasts for the week. When Brodie gets off the bus, we unpack her backpack together and read over the teacher's notes. She often asks for a snack and I like to have two options available so she's not overwhelmed by choice. We have a swing in our living room (this Southpaw one) and she usually grabs her iPod and listens to music while she swings for a bit. This helps her to re-regulate after a long day. Plus, it gives her a little bit of time to herself after having to "perform" and interact with people making her work all day school!

2. Establish a good rapport with your child's teacher. 

Given that every teacher needs to communicate with a bunch of parents, find out early on what form of communication he or she prefers—anything to make it easier to facilitate the sharing of information. Don’t beat around the bush here. Let your teacher know what information is important to you. I tend to care less about what got worked on in art class, but I always want to know whether Brodie followed directions during the day and even whether or not she ate her lunch since I know that tends to dictate her after-school energy! I always make it clear to teachers and therapists that we’re committed to supporting at home the work they’re doing in school, so if there’s something that they’re working on there, to let me know how I can incorporate that into our home life. Not only will this help solidify concepts for your child, but it reinforces the “team” approach between you and the school staff.

3. Talk about the school day with your child.

I know how tired we can all be at the end of the day, but this is an important one. For a child with limited verbal abilities, ask pointed questions based on the information that your teacher provides. So if your teacher writes “Today we made sock puppets in art class,” you can simply ask, “What did you make in art class today?” or even “Did you make a sock puppet in art class?” Before my daughter was verbal, I would even make statements with a fill-in-the-blank tactic: “Today in art class, I made a ____.” Before Brodie was able to use compete sentences, she could usually speak in one-word utterances or even just approximations, so I always encouraged her to fill in the blank verbally, however she could at the time. If a kiddo isn't able to use her voice, she could respond with signs or PECS or whatever form of communication works best for each individual family. Even if your child has a tough time sharing information on his own, or struggles to reciprocate in conversation, when you talk about about his school day, you show him you care and you're interested—and you're encouraging him to be successful.

4. Communicate with your child’s mainstream teacher, too.

If your child spends time in the general education environment, whether it’s for academics, art and music, or social opportunities like recess and lunch, you’ll want to be sure this teacher is committed to your child’s success. I always ask my daughter’s mainstream teachers to treat her like everyone else: Speak to her in the same way, with the same volume and tone. Help her to feel included, deserving of a place in the class. Of course, it also sends a message to her peers and helps to foster inclusion. Many schools offer peer to peer social programs and one of the best places for our kids to practice social skills is alongside other students they see in class and  in the halls. (This post on Six Tips For My Child’s Mainstream Teacher can help start that conversation.)

5. Stay (easily) organized.

We're all running around nonstop, hoping to remember the little things that could actually be the big things. I created Birdhouse to keep a record of everything including therapy appointments, medication dosages (and whether each dose has been given) and the circumstances surrounding certain behaviors, and help put parents' mind at ease.

Bonus: You can easily relay information to everyone on your child's care team—parents, caregivers, therapists, doctors, and yes, even teachers, to make sure they know what’s going on with your kid. If she’s having a tough day, anyone you give access to can see the notes in your Birdhouse account and discover that, say, she only slept for three hours the night before. Or, you know, hasn't pooped in five days. The more insight you have into your child, the more you can support him and set the groundwork for a successful school year!

Parents raising students with special needs, I join you in solidarity (and anxiety!) as we face another school year! High fives all around!

Tuesday, September 6, 2016

10 back-to-school things you'll never hear special needs moms say

Ten statements you will never hear special needs moms say as our children head back to school.

"OMG! He can't go back to school yet! He hasn't watched nearly enough TV!"

"I am not looking forward to dealing with routine again. I vastly prefer a lack of structure and chaos."

"What will I have to talk about during the day now that nobody is around to keep asking when we're going to Disney/what's for snack/what time Daddy is coming home/what the plans are for the birthday party/[insert child's preferred phrase of repetition]?"

"Finishing the summer break homework right before the bus pulls up to the house is a great way to kick off the school year."

"But wait! He didn't look at his iPad enough, either!"

"I'm so proud I provided my child with a summer of intellectually-stimulating activities. Trips to the ice-cream store count, right?" 

"Is it too early to say I can't make it to back-to-school night?"

"I will miss the meltdowns."

"I am seriously psyched for the IEP!"

"What am I going to do with all the extra time on my hands?"

Image source: Scott Beale, Laughing Squid

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