Monday, October 31, 2016

Pick up your sneakers, I asked


There's a pair of sneakers lying in the front hallway. There's always something lying in the front hallway, smack where someone can trip over it or Ben can grab it and start nibbling on it.

Often, the item lying in the hallway belongs to Sabrina. She leaves stuff everywhere: her backpack by the front door (for the entire weekend), her discarded shirt on the couch, her half-eaten yogurt on the kitchen counter, her hairbrush on my bed, as I discovered when I lay down on it the other night.

Max, he doesn't leave things around the house (other than the occasional toy fire truck) because we take care of him. We carry his wheeled backpack up the stairs—it's too heavy for him—and put it away. One of us helps him get dressed and undressed, brushes his hair, serves him food.

Max pitches in here and there, sorting laundry and setting the table. He gets a kick out of helping me find my phone, which I'm forever misplacing. "Max, do you know where my phone is?" I'll ask, and inevitably he does. "Yes, Mommy!" he'll announce, gleefully, and he'll go off and find it for me.

It remains to be seen whether Ben has inherited Dave's leave-it-lying-on-the-floor gene. Sabrina didn't get that from me. (She did, however, inherit my carb gene.)

"Sabrina, could you put your sneakers away?" I ask.

"They're Max's," she points out. Oh, they are. Dave left them there when he took them off him.

I'm on the verge of asking Sabrina to put them away when I catch myself. This isn't her responsibility. Too often, used to doing things for Max and caught up in the whirlwind of the day, I neglect to ask him to help around the house.

"Max," I say, "can you come here?" And he appears, and I point to the sneakers and ask him to put them away.

"OK!" he says. And he bends down. He drops one a couple of times. Then he clutches them tight and walks off. I'm glad, and not just because he's picking up after himself. Although Max usually forgets to use his right hand, the weaker one, he's holding a shoe in each hand.

It's the little-but-big things.

Friday, October 28, 2016

The Special Needs Blogger Weekend Link-up: Go!


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: Who is this boy?

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. 

Wednesday, October 26, 2016

The baby is their favorite toy: video proof


Dave and I joke that Ben is like a little wind-up toy because of the way he crawls around the house, his butt wiggling rapidly from side to side.

Actually, Ben is better than any toy his big brother and sister have ever had. They crack up at his babbling ("DIGGA DIGGA DIGGA DIGGA!"); giggle when he stabs a finger into the air as he shows off his newfound pointing abilities; and laugh uproariously when he splashes in the bathtub.

Yesterday, they discovered that if you put batteries in him, his feet will go and go. OK, actually, he doesn't require any batteries.

 

Tuesday, October 25, 2016

Vote for my baby for President


With so many undecided voters out there, it seems like it's high time Ben entered the election race, as he has many winning and inarguable attributes.

Age: 1 years old

Party: Independent

Experience: Professional baby

Slogan: "Let's play peek-a-boo, America!"

Health: Amazingly young and vigorous, his pediatrician says. Reports of diaper rash are completely unsubstantiated, and are yet more evidence of the perils of Russian hackers.

Disposition: Cheerful and even-tempered, especially after a two-hour nap. Not nasty. Extremely cerebral and curious, with a penchant for exploring and tasting various objects. Just needs supervision around nuclear weapon buttons so he doesn't press them.

Education: Mommy and Me class; graduated summa cum laude with honors.

Appearance: Handsome, with an emerging head of hair. Pardon the drooling, he's teething.

Style: Dapper, especially in Ralph Lauren rompers. Occasionally enjoys wearing a diaper and nothing else.

Net worth: $487.50 in savings plus a bunch of $25 bonds from relatives.

Scandals: None. Although he once accidentally erased a bunch of apps after messing around with his mother’s iPhone, he was exonerated by the FBI. And for the record: That videotape of him refusing to eat cake at his first birthday party was obviously rigged, because what kid doesn't enjoy birthday cake?

Debate performance: Granted exemption owing to the fact that he can only say "Ba ba ba" and "Da da da" and "Digga digga digga," although that is far more thoughtful and considerate than the racist, misogynist and otherwise offensive crap that comes out of certain candidates' mouths.

Policy positions: Ben is all for improved childcare for working parents, so his mom and dad can have a more sane existence and not be grumpy at night. He is very supportive of small businesses, especially ones that make teething biscuits. He is opposed to socks and mushy green vegetables. He believes there should be no tax on baby rattles, toys or diapers, and that infant formula should be allowed as a deductible. He also believes in free and unlimited caffeinated beverages for parents, and the right for all babies to crawl up the stairs if they want to. Stance on the Keystone XL Pipeline: "Hey, when's my next meal?"

Campaign contributions now being accepted in the forms of blocks, organic peach yogurt toilet and teething biscuits.

#ImWithBen

Monday, October 24, 2016

Who is this boy?


Dave and Max went on a New York City adventure this weekend. It was Max's idea, and he's been talking about it for weeks.

The day went just as he'd planned: He and Dave showered, dressed in nice clothes and put gel in their hair. Then they took the train to New York. Max had it in his head that they needed to rush to the train; that's what he assumes you need to do when one takes a train, because I make a mad dash out of the house on the mornings when I work in an office.

They took the subway to the Museum of Natural History, because Max wanted to see the dinosaurs. He saw them, he watched a movie about them and he was done. Next up, they had lunch downtown. Eating good food was the main objective of the day for both of them, I am pretty sure.

The only photo I got from them the entire day
They found a Jamaican restaurant. Max ate his body weight in mac 'n cheese, Dave had saltfish. Next, they walked to a firehouse. Then they had fancy ice-cream. Then they found a hibatchi restaurant; Max loves watching chefs cook on a table.

I kept keeping text and phone updates about what they were up to. Every time I heard Max say "Hi, Mommy!" gleefully, I felt the same.

This is the kid who used to be afraid to go to museums, events, concerts, restaurants or basically anywhere new. The noise and crowds were overwhelming and scary. Headphones helped, but often Max didn't want to stay. If we'd go to a new restaurant, he was likely to run out, screeching, and either Dave or I would hang in the entryway or outside with him and the other one of us with Sabrina.

For years, we went to this one diner near our home that Max finally grew accustomed to. We could only sit at a table way in the back, near the bathroom. It was always free because nobody else wanted it, except this one time we arrived for dinner and some guy was at "Max's" table. Max got upset and the waitress took pity on us and asked the man if he'd mind moving.

When this is your family history, you don't take outings for granted. Dave and I are both so awe of this boy who not just traipses so intrepidly around the city with his dad but is so curious about the world around him.

"Where are you going today?" he asks me every morning.

"Where are we going today?" he asks on weekends.

When Max was a baby, our neurologist told us to expose him to as much as possible to help his mind grow. Now, the possibilities seem endless.

When Max and Dave walked in the door at 8:00 p.m., he announced "I missed you, Mommy!"

He'd like to go back to New York in two weeks, please.

Friday, October 21, 2016

The Special Needs Blogger Link-up: Start your posting engines!


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: 10,000 freakouts as I check out a new school for Max

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, October 20, 2016

Ten thousand freakouts as I check out a new school for Max


Whoa. There sure are a lot of big trucks on this road. I am not happy about Max's bus driving alongside them. And this drive is about 15 minutes longer then his current school commute, not what you want when the roads are icy. And how am I going to be able to get to school fast if Max ever gets sick and needs to be picked up?

The building looks nice on the outside. Hmmm, what is up with the interior cinderblock design? Shouldn't that be reserved for prisons? This social worker is very nice. Average class ratio of six to seven kids with one teacher and an aide sounds good. This school mainly has students with cerebral palsy and Down syndrome, and some with autism. A good mix.

Wait, what?! The school doesn't believe in homework? Because it's a point of stress for parents and kids? Max needs homework! He learns best by repetition! A child can get homework if a parent requests it but still, that philosophy is perplexing. Need to grill the principal on that when we meet.

Good to know that plenty of other kids at school are using speech apps on iPads. Good to hear the school has OTs, PTs and speech therapists.

Wait, what?! Therapy sessions are only twenty minutes long? Doesn't it take about five minutes for a child to get settled in? What if you have a child like Max who is very engaged in therapy and has a good attention span—could you get sessions that are thirty minutes? One more thing to ask the principal about.

This is high school, though. There's not as much of an emphasis on therapies. And this is just the first school you're seeing. Maybe other  high schools also do shorter therapy sessions, if at all.  I know a mom who was told her child would receive therapies at the high school she's in, but her daughter's not getting what she was told. Nightmare.

Why is that boy sitting in the class not doing anything?

Why is that girl sitting in the class not doing anything?

Where are the students like Max?

I hope there are some younger teachers here, so far everyone's on the older side—it's good to have a mix of eager newcomers and ones with lots of experience.

Really impressed by all the life skill settings: a store, a supermarket, a kitchen, even a bedroom for learning to make a bed and fold laundry.

The graduates of this school have gone on to have jobs bagging at supermarkets, cleaning up at nursing homes and keeping clothes neat at a department store.

Stop it stop it stop it wipe your eyes bite your lip stop it stop it stop it.  

Ask what other, non-menial jobs students have had.

OK, one works with children at a church school, another helps with animals at a pet daycare place. They have jobs related to their interests. That's good.

He wants to be a firefighter. Yes, the guys at our station all know him. Who knows, maybe he could get a job there someday that doesn't just involve picking up after people. Although I don't know what that could be.

Love that the students sell stuff that they make at craft fairs.

Great, Max and I can check out their work center when we're here for an intake.

Maybe he really should be a model.

It really is a very warm, friendly, nurturing environment. The students seem happy and friendly. But just as important, if not more so, is making sure a school is capable of bringing out Max's intellectual best, helping him with life skills, and preparing him for a future all while balancing his physical needs.

I need to speak with some parents with students here.

I definitely need to check out that mainstream school and see what a program for Max would look like. That's one major thing missing from his life: socializing with peers who are not disabled. If he spends all of his education in schools for students with special needs, how will he be prepared for the real world? Are we setting him on a path that leads only to a sheltered special needs world?

What's hardest of all to figure out is whether this school has a modern, forward-thinking approach to youth with intellectual disability that assumes ability—and is open to trying new approaches.

What's hardest of all to wrestle with is my own fears and concerns about choosing Max's school home for the next seven years of his life. He's so bright. He's got so much potential. He needs deserves the school that will bring out his best.

Chill. There are other schools to visit. The more you see, the better your perspective.

OMG.

Wednesday, October 19, 2016

Life is hard when your homework is this easy


"It's easy!" Max announces.

We're on our deck, sitting at the table as Max completes a worksheet about analog time. He's getting all the answers right, and he's gleeful about it and even a bit smug. I like that.

This is a new thing, him telling me that homework is "easy." I appreciate it because his intellect is humming along, because he's taking pride in his reading and comprehension abilities and because for many years few things came easy to him.

In general, Max is becoming quite the know-it-all; he regularly informs me "I KNOW!" when I tell him things. But there's a flip side to this, which is that he occasionally makes like he understands things, even when he doesn't.

Max is at the point where he truly wants to get his homework right, and where he wants to seem capable. That's good. Sometimes, he'll admit "I don't know" when we're doing, say, his current events homework and he's not sure of an answer. Sometimes, though, he'll forge ahead even if he is unclear on something. I can tell by the look in his eye, and I'll call him on it:

"Max, did you really understand this?"
"Yes!"
"OK, then tell me why the mouse turned on the lighthouse light."
[Silence.]

The other day, Max brought a worksheet home that he'd completed in school: "Volume of a rectangular prism #1." The words struck fear into my hear.: Math was not my strong suit at school or ever. If you ever want to terrify me, whisper "hypotenuse" and "pythagorean theorum" into my ear.

Math isn't Max's strong suit, either. He is still working on basic addition and subtraction. So how in the world was he getting rectangular prisms?

I put in a call to the teacher. I asked, point blank, whether volume and prisms were too complex for Max right now. She noted that the class works on basic math throughout the week. She said that Max had a growing grasp of the concept of volume, and that he was so excited when he got it right.

And then, she told me what a delight it was to have Max in class because he is genuinely excited to be at school and to learn. It's so true: Max loves school. He has been known to cry when he has days off due to, say, a teacher's conference.

I grinned a big grin as the teacher spoke. Max has got lots to learn, as do we all, but being psyched about stuff like prisms puts him ahead of the curve.

Tuesday, October 18, 2016

A mother of an autistic child takes a stand against Donald Trump


The other night, I saw a new ad for Hillary Clinton's campaign. It features Jennifer Kohn, a Republican who has a son, Max, with autism. She noticed that it's not uncommon for kids with autism to flap their hands. When she saw Donald Trump making that gesture in jest, she found it "completely disqualifying."


Last November, Trump came under fire for seemingly mocking a New York Times reporter with disability at a rally in South Carolina. The journalist, Serge Kovaleski, has a condition called arthrogryposis that affects his joint movements.


Trump has said that he was being "expressive" although the language he used implies something else: He referred to the New York Times reporter as "the poor guy" (because he has a disability) and "you gotta see this guy" (because he has a disability).  


Last Spring, the nonprofit Family Member (I'm on their advisory board) took out an ad in the Hollywood Reporter, expressing outrage that people were so incensed over Trump's mockery and yet, tolerated regular ridicule of people with intellectual disability in film and comedy routines. 

Plenty of people do not take it lightly when others make make fun of those with disability, including parents like me. Earlier this year, when comedian Gary Owen made cruel fun of a cousin with intellectual disability in his Showtime special, disability self-advocates and others spoke out. Eventually, Owen removed the offensive content from the show. 

You can imagine, then, that some of us take it even less lightly when a person who pokes fun at someone with a disability is a presidential candidate. Trump's impulsive mocking of a reporter with disability revealed his immaturity and disdain, just as his unscripted words in that Access Hollywood tape revealed his immaturity and disdain toward women. His behavior was yet one more example of his intolerance toward a minority group.

Hillary Clinton is right to use this incident as propaganda, and raise concern about a candidate for President of the United States who is childish enough to make fun of someone's physical appearance. In contrast, earlier this year she announced a major autism initiative for people on the spectrum.

Mom Jennifer Kohn notes in the commercial that she may not always agree with Hillary but she considers her reasonable, smart and capable of working with people to solve problems. Meanwhile, Donald Trump continues to alienate people with his words and actions. His public demeaning of a respected journalist who happens to move in a different way than is typical created yet another divide.

As the mom of a child who moves in a different way than is typical, talks in a different way than is typical and thinks in a different way than is typical, I'm scared of an America under Donald Trump. I want Max and children and adults like him to be treated fairly and with common decency. I know that no politician can make that happen, but still: A president should be able to model respect and equality for all.

Image source: YouTube/The Right Thing

Monday, October 17, 2016

This is the joy you feel when you're 13 you can finally dress yourself


Until I had a child with cerebral palsy, I never thought twice about the ability to pull on pants, button a shirt or zip up a jacket. Then I had Max, and it became clear when he was a tot how challenging using his hands would be.

Therapists spent session after session on the basics, coaching him how to push buttons on toys, grasp balls and blocks and hold a spoon. They showed me how to position his pudgy little fingers around objects, and how to hold my hands over his so I could teach him the movements for throwing and catching.

As the years passed, Max has been able to do more and more with his hands. He can hold playthings and feed himself, and he is a whiz at navigating around the iPad. Yet getting dressed remains a major challenge, holding him back from independence. His fingers do not have the dexterity to close buttons; consider the precise movements involved in that one small action. He doesn't yet have the coordination to hold a shirt and slip his arms in. Manipulating pants is an issue, too.

What makes things even trickier is that Max tries to do everything with his left hand alone. The stroke Max had at birth affected both sides of his brain but was bigger on his left side, so his right hand is the weaker one. Typically, he rests it on his stomach or chest and forgets all about it. "Use two hands, Max!" we're always prompting him.

I was really excited when Mindy Scheier—a designer, mom to a son with muscular dystrophy and founder of the nonprofit Runway of Dreams—teamed up with Tommy Hilfiger for a line of adaptive clothing. A couple of weeks ago, we got a shirt from the new collection. It looks like any other stylish Tommy clothing, except the buttons on the front and cuffs of shirts and on the fly parts of pants hide magnetic closures.

I helped Max get his arms into the sleeves. And then, instead of buttoning his shirt as I've done for him all these years, I let Max take over.

At first, he had a hard time lining up the closures, and the shirt kept going on askew. I'd open it back up, and he'd try again and again and again because this boy has the gift of super-determination. (Not to mention: good hair).

And then, he got it. The joy he so clearly felt about closing that top with his own two hands (OK, one hand) just about made me burst. Max giggled in excitement; I gasped because I was choking back a sob.

Were there ever more satisfying "clicks!" in the history of clicks?!

I can't know exactly how it feels to be 13 years old and finally be able to close your own shirt. But I can say that as Max's mom, I felt relief, pride and the thrill of a major win.

And hey, Tommy Hilfiger: If you're looking for a model for your next collection, Max is available! Although you may have to pay him in chocolate milkshakes.

Friday, October 14, 2016

The Special Needs Blogger Weekend Link-up: Join now! Pay never!


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: There's a place for him at our house of worship today

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, October 13, 2016

That time he tried to get me arrested


Yesterday was the Day of Atonement, the holiest day of the Jewish year. Max happened to wake up in one of his contrarian moods. It happens to all of us, right? Typically, though, police offers are not involved.

Max had stormed around the kitchen in the morning, upset that we were tending to the baby (it was Ben's birthday) and not helping him get dressed right that second. En route to the temple, he was calm and we practiced saying "Yom Kippur" (articulating consonants is still a work in progress).

Max and I were the only attendees at the inclusive service. It's a relatively new initiative and next year, as the educator running it and I agreed, we'll make a concerted effort to spread the word. She was open to letting Max lead the way. Well, Contrarian Fireman Max didn't want to say that blessing. Or that one. Or that one.

Max did recite his favorite, The Shemah, the usual proud smile on his face. He listened as the leader and I sang a few songs. He didn't want to hear a story, but agreed to play a Velcro-ball toss, trying to land it on numbers on a mat. The point she wanted to show: Sometimes we're perfect, sometimes we're not, as Contrarian Fireman Max was demonstrating. But at least he was there and participating, and I was glad for that.

Soon enough, Contrarian Fireman Max decided that I was the one acting not perfectly. Because when he walked out of the chapel at the end of the service before it was done, I informed him that it was rude to leave. I thanked the woman who lead it, and told Max that sort of behavior was not OK.

And then we were in a downward behavior spiral. Max stood in the lobby and made huffy mad noises. He walked outside and told me he wanted to leave.

I said "No, we're here this morning because of Yom Kippur, and Daddy, Sabrina and Ben are coming soon."

He stomped his feet and made more huffy mad noises.

"Max, this is not OK," I said.

"NO!" yelled Contrarian Fireman Max. "You're not nice!"

I didn't have it in me to deal. It's rare that Max acts up this way, and usually he chills out pretty quickly. But I was fasting and had a caffeine-withdrawal headache and besides, it was a day when I wanted to be at peace and reflective. That wasn't happening.

Then Max spotted a sheriff who was stationed near the temple for security. He dashed up to him.

"Hello, young man," said the sheriff.

"She's BAD!" said Max.

Evidently, on this Day of Atonement, he thought I was in need of not just repentance but reckoning, too.

The sheriff looked at me, unsure of what Max had just said. It sounded like "Eee aaaahh!"

"He wants you to know that I'm bad," said I, his trusty translator.

"Yeah, she's BAD!" said Max.

"He's mad because I've been telling him not to misbehave," I explained.

"GO!" Max informed me, gesturing toward the police car. "GO sit in the police car!"

He did all of this with a huge grin on his face, so clearly he knew I wasn't actually going to get arrested. (Or at least, I am choosing to think that.)

"He'd like me to go sit in the police car," I told the sheriff, who appeared to be on the verge of laughing.

Max looked at the sheriff expectantly.

"Perhaps you can remind him how important it is for children to not yell at their mothers and to listen to them," I suggested.

"Max, your mother is right, it is not good to yell and you should always listen to your mother because she knows best," he said.

Max looked disappointed. He turned on his heels and walked back to the lobby.

"Thanks," I told the sheriff, who said, "All in a day's work."

Back at home, Max returned to his usual pleasant Fireman Max self.

Evidently, this alert-the-authorities approach by children perturbed their parents is not unheard of. When I told a speech therapist who's a friend about what happened, she told me about the time a child with Down syndrome called 911—because his mother yelled at him.

At bedtime, as I was videotaping Max talking (it helps him better perceive how he sounds when he speaks), I brought up his behavior.

For a few seconds, Contrarian Fireman Max reared his head—and he knew it. Then he gave me his usual sweet kiss good night.

Wednesday, October 12, 2016

There's a place for him at our house of worship today


This morning, Max and I will be at an inclusion service at our temple. Max has been psyched—psyched!—about it. This from a boy who traditionally hasn't been that into going to services.

This morning, I am going to be psyched, too, because I have found a place where all of us feel comfortable and included.

Readers of this blog know that for years, it was an ongoing struggle for our family to find a temple that offered services for children with special needs, who can have attention and sensory issues. I'd heard of several, but none were local and it was important to me to have a sense of community along with spirituality.

And then, a new rabbi started at the temple we'd left. He created a service for families and children of all abilities, which we happily attended last year. And then, the rabbi helped prepare Max for his bar mitzvah and officiated at the ceremony with such warmth, pride and enthusiasm that guests were still talking about it months later (and he treats every child that way, exactly the point). Since his big day, Max has been genuinely excited about saying certain prayers and observing traditions of our religion.

The head of a synagogue, church or mosque doesn't just set an example for how staffers should treat youth with special needs—he sets the tone, making it clear that all are truly welcome. I discovered the temple trickle-down the other week, when I spoke with the director of the new youth program. Sabrina's going to events and I thought Max might want to as well.

I explained Max's needs to the director, and that Max would need a hand with eating and other life skills. And within a few minutes this man said, unhesitatingly, that he'd welcome Max, he'd be glad to help him and we'd see how things went. I'd been expecting to have to do some serious persuading to get him to agree to let Max come, but no: It was that easy. And then the angels sang!

Last week, Max and I went to the inclusionary service on Tuesday morning. He'd decided it would be a mom and me thing. There was only one other family there, which suited us just fine. Max helped the educator leading the service turn the pages of the booklet (after informing everyone that his name was Fireman Max, of course). He lead The Shemah, a central prayer that affirms our faith in God. He listened to the book that was being read and even though his attention wandered, for once, he did not try to bolt out of the service.

Today, we will be at that inclusionary service again, Fireman Max decked out in a prayer shawl with streaks of flame that was made for him at camp this summer. And I will be sitting there by his side, thankful and content and filled with a spiritual peace that was missing from our lives for too long.

Tuesday, October 11, 2016

One big way to help your child with special needs: Have an open mind


This weekend, at an event, I met parents who had moved to this country for their child with special needs. They'd lived in a major city there and yet, they told me, there were no services or specialized schooling for their son. "A lot of children stay at home," the mother said. For a while, they'd come to the states for a month to get him intensive speech therapy, then return home. Finally, they moved here. They talked about doing horseback riding therapy for him. When I said there were a couple of places nearby and mentioned their names, the mother whipped out her phone and tapped notes.

Later, I bumped into an awesome mom I met through this blog in the most amazing way: She'd been Googling treatments for her child, who like Max has cerebral palsy. She found this blog and read about Max's stem cell infusion. Her child ended up getting one, too, and she was considering a second round.

This weekend, I also met parents of a child who was nonverbal. I asked about whether he had tried an augmentative communication device or eye-gaze technology. They said they'd tried a lot and nothing had worked. They seemed resigned to a reality in which their child might never change. I mentioned that I could give them the name and contact info for a really great augmentative communication specialist who might have ideas. The dad nodded politely. They did not take me up on the offer. Who knows why, but it got me thinking.

There are a lot of things I've learned in my journey as the parent of a child with special needs about what will benefit him. One of the top ones is: Have an open mind. You never know when a treatment you haven't yet tried can help, a new expert could help or another parent's advice can help. No harm can come from accepting information, but good could.

I know how easy it is to get complacent about your child, as one of Max's OT's recently reminded me. Because of the cerebral palsy, Max's body still has certain infantile patterns, particularly the asymmetrical tonic neck reflex (ATNR)—you've seen it in babies. When infants turn their heads, the arm and leg on the same side extend, like a fencing position.


The ATNR is usually integrated into body movements when a child's around three months old. When it persists, it can cause trouble—a child may have trouble bringing his hands together, for instance. It can keep a body off-kilter (Max walks OK but also trips on occasion). It can lead to scoliosis.

I have asked for therapeutic exercises over the years to help with the damn ATNR, tried them, fell off the wagon. And then, Max's OT got trained in the Masgutova Method, a noninvasive treatment that involves doing limb exercises to retrain the brain—aka muscle-control central. And did I want to try it? Yes, please.

It was a message to me: We could be doing more to enable Max. When he was little, we did hippotherapy (therapeutic horseback riding), aquatic therapy, craniosacral therapy, hyperbaric oxygen treatment. As Max got older and improved, we did less. Now a teen, he still has plenty of potential, as explored in Dr. Karen Pape's new book about the power of the brain to heal. To believe otherwise would be in Max's worst interest.

I am not saying parents of children with special needs should be falsely or overly optimistic. I'm saying that although we may feel disheartened at times or been-there-tried-that-fatigued or out of hope or overwhelmed by all there is to do—or as content as we may be with our children's progress (and still overwhelmed by all there is to do)—we have to keep an open mind. Obviously, we can't do every therapy and treatment we find out about, as that isn't humanly possible and besides, our children need to have lives, too. But it's good to have them in our arsenal of care and hope.

Yesterday, I read an amazing Facebook update from Joyce Hillick Ely, mom to Sarah, an adult with Down syndrome. The two had delivered hand-sewn pillowcases to the hospice where the grandmother had been at the end of her life. Joyce recounted how Sarah had made her way around the facility, chatting with volunteers, nurses and a patient. "If ever there was a time to accept the notion that limits are unnecessary, it was today," she noted.

We don't know our children's limits. Doctors can't put a cap on their potential, either. And that's why it always pays to ask the questions, take the name or the phone number, keep the advice in mind and be willing to try new things. We owe that to our children.

Image source: Flickr/Sunny M5

Monday, October 10, 2016

I can't stand pumpkin stuff except for photos of my kids with pumpkins


Every fall, I find myself baffled by the same mystery: Why are people so obsessed with Pumpkin Spice Lattes? I think they're gross. The world may be divided into dog people and cat people and Team Hillary vs. Team Donald, but it is yet further divided into people who worship at the alter of Pumpkin Spice Lattes and people who don't get why they exist.

I don't like pumpkin, period. My kids sitting next to pumpkins, however, is a whole other story; that, I adore, and I got my fill this weekend at an event. Delicious, no calories and just a little baby fat. And in case you're wondering: We left the house without Ben's shoes. #thirdchild






Friday, October 7, 2016

The Special Needs Blogger Link-up awaits your posts


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: You don't have to give my child free donuts

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, October 6, 2016

Warning: This video contains extreme dancing baby cuteness


Ben, who turns one next week, is amusing all of us a lot lately. He is crawling wondrously fast, as if someone wound him up and let him loose. He's speaking full gibberish sentences. And he's dancing. OMG, he's dancing, and I know I'm his mom and all but boyfriend's got moves.

Wednesday, October 5, 2016

You don't have to give my child free donuts


Dave and Max walked in the other day from a Dunkin' Donuts run.

"The woman gave us free donuts," Dave said, handing me the bag with a sheepish smile.

"What happened?" I asked.

Dave explained that the staffer at the counter had watched as Max informed Dave he wanted chocolate milk. "He doesn't talk," she said, although Max was talking, in his own way.

Dave noted that Max talks. Then she asked Max which donut he'd like and he pointed to the jelly kind. She gave him two, charging Dave only for coffee and a chocolate milk.

She was just being kind, of course. Except she gave Max free donuts because he has a disability, and she felt badly for him. And that is what concerns me.

Now, there are far worse things for me to take issue with than people offering my boy sugary goodness. But what gets to me, as it always does, is the pity. The thinking that having cerebral palsy is such a misfortune and that his life must be sad and terrible, so he deserves free donuts.

I'm thinking about this on World Cerebral Palsy Day, which is dedicated to celebrating the lives of the 17 million worldwide with cerebral palsy and those who support them; creating a voice for people with CP; and making changes that improve their lives.

I want all of that for Max. I also very much want people to treat him normally. It's doubtful that woman at the counter regularly hands out donuts to teens who walk into the store. Max may have physical and cognitive differences because of his form of cerebral palsy, but at heart, he is a teen and he deserves to be treated like any teen.

Sometimes, strangers offer up prayers instead of donuts. A couple of years ago, I spoke on a BlogHer panel with Katinka Neuhof, who writes at The Fabulous Adventures of a Four Legged Woman. She told of rolling down a street in New York City in her wheelchair, with her son by her side, when a woman approached and announced that she would pray for her.

If you're the parent of a child with CP, this may have happened to you on occasion, as it has to us. There are people who think those with cerebral palsy are broken and need to be made whole. There are people who think those with cerebral palsy deserve prayers because they have suffered a great tragedy.

As the mom of a child with cerebral palsy, I don't see tragedy—I see a boy who is every bit as wondrous and complete as my other children. And, on occasion, irksome. (See: "teen.")

Besides gratuitous prayers and jelly donuts, the other challenge Max faces with people who don't know him is that they sometimes don't know what to say or how to behave. When he was younger, they'd ask "Can he understand me?" as he stood right there. Now they may smile at him kindly, stare or not approach him at all. Things can get awkward.

Writer/activist Cara Liebowitz of That Crazy Crippled Chick tells of the time she went to the library with her mother to renew her card. She was feeling tired and lazy, so they decided her mom would walk across the street and do the renewal, only Cara needed to sign something. "So I got out and schlepped across the street and it was really fine," she recalls. "But when the librarian saw me with my crutches, she obviously felt bad for making me come in. And she goes to my mom, 'I didn't know she was....' And she trailed off and tried again. "You should've told me she was...." She was obviously trying so hard not to be offensive. My mom and I reassured her that it was okay, I signed the form and we hightailed it out of there, barely making it past the door before we burst into hysterical laughter."

The awkwardness and misplaced kindness stems from people's discomfort with anyone different, and wrong assumptions. A lot of us, myself included, weren't raised knowing anyone who had a disability. We may not have been taught by our parents about what is more alike than different.

Cara notes that she sees people's perceptions of her change based on how visibly disabled she looks. In college, when she used a walker or crutches instead of a wheelchair, she says, "people would be so happy that I was walking and comment on it like, 'So good to see you up and about!' as if I was recovering from a bad flu or something. The thing is, walking is actually harder for me. I don't like to walk and I can do a lot more things when I have my chair. But people are so set on the idea that walking is better."

People are also so set on the idea that talking is better, even if Max has a speech app that enables him to communicate more easily than he can by speaking.

People don't get it. So they get flustered. Or they instinctively choose kindness and pity, instead of parity. I'd venture to say this is true not just of kids and adults with cerebral palsy but ones with Down syndrome, autism and other disabilities as well.

My child with CP does not need sympathy. He needs ordinary respect and people who don't avert their eyes or act overly sweet. Max's sister is one of the few people in his life who cuts him no slack. "Max, you're a gen-ius!" Sabrina said the other day when Max pointed out that it was raining. She was being sarcastic, and I so appreciated it. Why shouldn't people be sarcastic with him? Why shouldn't they joke around with him and even tease him, as kids tend to do? 

To be sure, youth with disabilities do get special accommodations—say, at amusement parks. Why is that OK? Well, it levels the playing field, enabling a person who is scared of crowds or who gets fatigued waiting in line because his muscles tire easily to enjoy the amusement park, too.

Giving free donuts to a boy because you feel sorry for him is a whole other thing. It's a pity present. It doesn't equalize; it demeans. And yes, I am sensitive to this sort of behavior because we have often encountered it over the years—have free ice-cream, have a free toy, have a free ride, have a free whatever because you have cerebral palsy. I mean, if Max had been wailing and the DD staffer simply wanted to make his day better, sure, bring on the free donuts. Most of us have gotten freebies over the years from store people, in the name of goodwill. But Max was just standing there, being his usual self.

Kind gestures that emanate from outdated viewpoints about people with special needs aren't the sort of deeds I want for my son, as well-meaning as they may be. They keep him rooted in old-school perceptions that people with disability are unfortunate. And that is not a message I ever want Max to pick up. I also don't want him to grow up thinking he can get free stuff because he has cerebral palsy. Dave and I are glad to use these occasions, when possible, as teaching moments, thanking the individual even as we point out that Max is a capable person, in his own way.

The manifesto of World CP Day envisions equality that I dream of for Max. As it says, "We have the same needs: To be loved. To connect. To be part of something. We share the the same hopes and dreams. The same interests and passions. We all have a similar hunger to explore thoughts and debate ideas. To contribute. We all have the same commitment to living a life of purpose and meaning. These are not just things we have in common with each other. We share them with all of humankind. Because we are not different at all. We are the same."

As for those jelly donuts, Max wasn't aware of what happened. I hope perceptions of people with cerebral palsy continue to evolve over the years and when Max is older, there are far fewer people offering him I-feel-bad-for-you donuts. But heck, if they keep right on handing them out, I hope Max looks them in the eye and informs them, "You don't have to do that for me, I can pay for them—but thanks!" And then he walks out of the store with his stash in hand, without a doubt of who he is.

Also check out: What cerebral palsy is and isn't

Image: Flickr/Dave Crosby

Tuesday, October 4, 2016

You're in trouble, he says


"You're in trouble!" Max informs me with a smirk on his face, after I drop a bunch of hardboiled eggs on the kitchen floor and they scatter everywhere.

I laugh, as I always do when he says this. It started a couple of months ago, and I'm not sure where he got it from. It's not something I say.

I am fascinated by the phrases Max picks up. A few years ago, he started using "OMG!" appropriately, thanks to his wonderful teacher who understands the importance of enabling kids with intellectual disability to know age-appropriate words. 

Max has also been saying "See ya!" lately, done with a big sweep of his hand. I saw his teacher at Back To School night and told her about it. This, too, came from her—she no longer teaches Max but whenever she stops by the class, it's what she says. 

Oh, and like any teen he particularly enjoys saying "I know!" when I tell him things. Lately, I've been trying to get him to say "See ya later, alligator!" more clearly—he needs to practice his g's. 

I also enjoy hearing him asking: "How are you?" and "Are you OK?" 

I relish these exchanges because I will never, ever take his speech for granted—or the fact that he has grown into making conversation and asking questions. I'm also thrilled that he's expanding his repertoire of words and phrases. Max has such a big personality, and he tries to hard to express himself through speaking even if his speech can be hard to understand.

Still, I don't hesitate to call him on it when he's teasing me.

"Max, I'm not in trouble for dropping some eggs—people make mistakes!" I tell him.

"OH!" he says, and laughs, and I do, too. 

Monday, October 3, 2016

One-on-one time with my big kids


Since the baby arrived, I've spent a lot of time focused on...the baby. Little ones have a way of doing that to you. Hold me! Feed me! Change me! Play with me! Feed me! Change me! Play peek-a-boo eleventy billion times in a row with me!

I'm still adjusting to this mom-of-three thing, and there are times I feel like nobody is getting the best of me. So every so often, I spend one-on-one time with Max and Sabrina.

For Sabrina, that may involve going to a dance or theater performance but more typically means eating lunch out and shopping for clothing. This is not particularly zen, because we inevitably end up arguing over something super-pricey she wants that she does not need (IMO) except she really does (IHO), but we have fun. This weekend, we had turkey BLTs and she got a pretty blue dress plus a t-shirt that looks like it has clothing pills all over it except it's supposed to look that way, and it seems as if they charged extra for the pilling.

Max's idea of a great time is going for ice-cream, driving to the local fire station, roaming around the mall or seeing a movie. This weekend, we went on a date to see Storks. His favorite theater is one where you can have food served as you sit in big comfy armchair,  but we ended up at a place closer to the house. As soon as we sat down, Max informed me that he preferred the other theater and could we go? Going out with him isn't always so zen, either. Who am I kidding? Parenthood isn't zen.

Max sat back in his seat and watched the previews start, and I marveled at how engaged he was. En route, I'd reminded him how scared he used to be of going to movies at indoor theaters (he was always fine with drive-ins) until he saw Monsters University at the theater in town three years ago and then he was hooked. I like to remind him of how far he's come.

He squealed when the preview for Sing came on (we're both excited to see it). Storks was adorable and had both of us laughing. We were especially amused that the baby in the movie sounded like Ben.

Sometimes I watched Max watching the movie, which is also enjoyable to me. I am grateful that he's reached the point where we can laugh together at a funny movie. Oh, and I am also grateful that he has no interest in seeing LEGO Batman.



Related Posts Plugin for WordPress, Blogger...