Monday, July 31, 2017

Running away from home is good for you

Thursday, something amazing happened: I took a trip with my two best friends from college, Hedy and Wendy. Amazing because we had great fun, but also because we actually made it happen. It's been about twenty years since we went away together. Incredibly, we are all only 23 years old!

The timing worked: Max and Sabrina are in camp. Ben promised he wouldn't jump off the couches if Dave watched him for four days. OK, technically Ben didn't promise that but he and Dave were out and about in the park, the zoo and other places with no couches to jump off of, so all was good.

We headed to Saratoga Springs, New York. We stayed at an old hotel that was supposed to be charming but was mainly just old but who cared. We got massages then lounged at the gorgeous pool in the state park and tried to be deviant by sneaking in a bottle of wine only we didn't have an opener. We ate really good food and really good bad food (hi, gigantic cinnamon bun at Sweet Mimi's). We browsed cute shops and a farmers market. We took a ranger tour of the state park. We Facebook-stalked and Google-stalked people we'd gone to school with. We sampled honey and cheese and wines and water laced with turpentine or, rather, how naturally carbonated water from the mineral springs tasted to me, although it is said to have health properties. The still, spring water from the State Seal Fountain was seriously good—locals lined up to pour it into jugs.

We were not on any schedule, another highlight of the trip. Also: I left my computer at home and otherwise attempted to unplug.

I felt relaxed, rejuvenated and happy very so much, as Max would say.

I wondered: Why should it take a trip away to make me feel this good? How often does that happen? (See: Once every 20 years.)  Don't I deserve to occasionally put my own needs ahead of my family's? Doesn't that analogy about the importance of putting the oxygen mask over your own face before you place it on your kids' make me roll my eyes but yet: so true?

Then I came home and spent three hours doing chores.

Still, if I don't find the fun, no Fairy Fun Godmother is going to help me.

In other words, if you'd like to go taste wines, I'm in.

Friday, July 28, 2017

The Disability Blogger Weekend Link-up: It's go 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: When a store employee made fun of her son, this mom did the most amazing thing

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, July 27, 2017

See Ben run. Run, Ben, run!

At 21 months old, Ben is exploring everything he can get his hands on and anywhere he can go. He runs, not walks, most places. If he's in the kitchen and wants to get a toy from the living room, he zips in there. If I tell him to grab his sandals because we're headed outside, he dashes over to the shoe tray by the back door. When we head to the park, he trots there. 

This running: It brings me so much joy. While I consciously don't think it's because I didn't get to go through this with Max, maybe there's a vestige of that. (At 21 months old, Max was commando crawling, which we were thrilled about.) Either way, it's ultra-adorable and reflective of this time in Ben's life, when he's just so excited about everything:

Oooh, watermelon! I shall prance around with a piece of it in my hand to express my excitement!

Yippeeeeee! A garbage truck! Outside my window! I shall do laps around the foyer because this is so giddy-good!

What is this metal thing on the floor with holes? Grate? Wha? I think I shall zoom back and forth and back and forth over it because it makes a funny noise! Ha ha ha!

Oh! Mommy is in the bathroom! I shall run away from Daddy and bang on the door because she should not be in there by herself! 

I mean, the moonwalk was pretty impressive. But the the way Ben flaps his hands when he runs kills me every time. He also likes to babble as he goes: "Yoyoyoyoyoyoyoyo!"

I see it and hear it and I feel his toddler-ness, and I ache for him to stay this age.

Wednesday, July 26, 2017

When a store employee made fun of her autistic son, this mom did the most amazing thing

Stacey Gluberman Trotti was scrolling through her Facebook feed one morning in late June when she came upon a disturbing post a friend had shared. It was written by a young woman standing in line at a Dunkin Donuts. The two teens in front of her had been laughing at a young man seated at a table nearby who was making noises and tapping on the wall. When they put in their order, the employee behind the counter—who'd also been laughing at this young man—handed them their coffees and said, "Here's our entertainment for the day, bright and early."

Horrified, Stacey realized the young man they'd been laughing at was her son, Jake, an 18-year-old with autism who stims with humming and tapping. He and his aide, Lisa, regularly stopped by this DD as part of their morning routine.

As soon as Lisa arrived that day, Stacey showed her the Facebook post. Yes, Lisa confirmed, that was them. She said she'd chosen to ignore the teens; she hadn't realized employees had been involved.

"Thankfully, Jake didn't understand that people were making fun of him. I was angry, hurt and disgusted—all of the emotions," says Stacey, who lives in Long Island, New York. "But I didn't lose it, I went into advocate mode. I wanted to get over there and address it."

At the store, she told the general manager what had happened and how disgusted she was. She wasn't alone: "Apparently, other people who'd seen the post on Facebook had come in and said things, and the store was also getting phone calls," she says.

Back in her car, Stacey says, "I broke down. As I sat there, the owner called. He was very upset, and said he'd investigate what happened. Then I went home and cried more. When I told my daughter, who's 15, what happened she also got upset. She is very protective of her brother—she always wants to confront people who stare."

Stacey shared the post on Facebook, noting, "I have to be my son's voice/advocate and unfortunately educate others.... Let's hope that some sensitivity training is put in place. That's the only good thing that can come from this."

After more pondering, Stacey called the owner back. "I told him something else needed to happen besides an apology," she says. "I wasn't sure what. But I didn't want it to be just me complaining about one issue—I wanted it to be for the good of our children." Meanwhile, her post went viral, and she was comforted by what she describes as "a tremendous outpouring of support from the local autism community."

Soon after, a friend connected her with the Nassau/Suffolk chapter of the Autism Society. Stacey spoke with the head of it, Suzanne Reed, and they scheduled a meeting with the owner to see how they could move forward. That took place in early July.

The owner had reviewed the videotape and saw the smirking employee. He informed them that he'd been removed from the store. The women also found out that while employees view a 15-minute video involving how to treat customers with disabilities, it featured only people with physical disabilities. "We had to explain to him that people with autism can look typical," says Stacey. "My son may look like a young man but he's childlike and he stims. Employees need training about that."

The owner was interested in training for his store, as well as others in the area. Stacey, a social worker at a school for children with disabilities, has offered herself up; she might partner with a staffer from the National Autism Society down the road.

"I really appreciated it when the owner said, 'Where parents fail, society needs to teach the kids,'" says Stacey. "He felt really badly. He also talked about doing education in elementary schools and bringing in donuts. And we discussed the possibility of having a person with a job coach do some work at the store."

It doesn't matter which Dunkin' Donuts this occurred at. It could have happened at any store, anywhere. It was revealed because a caring young woman spoke out against the egregious behavior she witnessed. The owner was appropriately apologetic. responsive and prepared to make good. Still, it does make you wonder about what kind of disability awareness training employees in this country receive. Stores and companies would do well to make sure staffers understand the basic tenets of respecting customers of all abilities.

Also, a word to clueless people who think it's amusing to make fun of people with disabilities: If your boss doesn't catch you, social media just might.

Jake and his aide recently returned to the store, says Stacey, "and he was treated like a king! The employees were very friendly. Jake likes to flick string, and one of them asked why he did that. I was glad she asked. "

Although Stacey's sad that this happened, she's pleased with the outcome. "A part of me thought, I don't want to deal with this, but then I thought, I have to educate people and let them know it's not OK to ridicule children, teens or adults with special needs," she says. "It's bigger than just me and Jake. It's about treating any kid with autism with respect. Our children are out there—at the gym, at the beach, and in society with everyone else. You can't control the customers, but you can teach employees."

Tuesday, July 25, 2017

The lesson of the pizza bowl fail

Max snookered me into getting him pizza the other night. I'd promised him frozen yogurt, but I hadn't had time to eat dinner after I got home from work and said I wanted to first grab a slice. "I want pizza!" he announced, even though he'd already had dinner. And so, he had pizza as an appetizer for his dessert, or something like that.

Pizza is not an easy food for Max to eat; because it's thick and chewy, it can pose a choking hazard. At home, we shred it with Tiny Bites Food Shears. When we're out, I use a knife and fork then dump the pieces into a bowl for Max to scoop out, with a square of tacky Dycem beneath it for stability. And so, I asked the guy at the counter for a fork and knife and carved up a slice. Just as I was about to slide the bits into a bowl, Max pointed to the paper plate.

"Max, it's easier to eat from the bowl," I pointed out.

"No!" said Max. He wanted to eat the pizza off the plate. So I slid it over to him, then watched in awe as Max speared the pieces and chewed them well.

As I sat there, it occurred to me that I don't always know what is best for Max, especially as he's getting older—both because he is evolving, and because he can now tell me what's best for him.

This is a hard thing to wrap your head around when you have done so much for your child over the years: the therapies, doing exercises at home, the specialist appointments, modeling how to move and talk and play, yet more therapies, pushing to get him into programs. So. Much. Pushing. And while there is only so much you can do to help your child develop, you take heart in knowing that you are doing everything within your powers.

And then one day you are in a pizza joint and realize that your boy is reaching the point where you realize he is capable of co-piloting his present, and future. Yes, he has been voicing opinions and preferences for years, but he hasn't had much to say about his physical challenges until now. And he is telling you what he wants and needs, and you should listen.

I have no idea what it feels like to have cerebral palsy and fingers that don't easily bend. If Max is telling me that picking up pieces of pizza is easier done from a plate than a bowl, who am I to disagree?

And that, my friends, is the lesson of the pizza bowl fail...and win.

Monday, July 24, 2017

This viral story could help change attitudes toward kids with disabilities

You may have read the recent viral story about a woman who comforted a child with special needs having a meltdown on a plane. In some ways, I wish it hadn't been such a big deal. In other ways, I'm hoping it will have an impact on people—something nobody wishes more than the woman involved, who I spoke with yesterday.

Rochel Groner and her husband, Rabbi Bentzion, run the Friendship Circle in Charlotte, N.C., and ZABS Place, an upscale thrift boutique and employment training center for people with disabilities. They were on a plane headed to New York from Tel Aviv, escorting a group of young adults home from a trip. Max has participated in the Friendship Circle since he was five, so I have no objectivity here—just a whole lot of admiration and appreciation for their programs for youth with disabilities. (Last week, in fact, I toured Lifetown, a gigantic, game-changing center in Livingston, NJ, with recreational, therapeutic and educational facilities.) The flight had been delayed for hours, and people nodded off. Rochel was awoken by a noise coming from a child several rows behind her. The sounds grew louder, then the child started shrieking.

"I could tell he was a child with special needs," says Rochel, "and that the meltdown couldn't be resolved by giving him gum or letting him cry himself to sleep—he needed help." Meanwhile, she continues, "people were craning their necks and starting to get restless. I'm a pretty shy person, more behind the scenes, but finally after 15 minutes of screaming I got up and headed over." She came upon a woman in a black robe and head scarf and a boy around 8 or 9 years old in a tunic and matching pants standing in front of his seat, tears streaming down his face.

"I just stuck out my hand—I wasn't sure what I was going to do, I know it must have seemed like a funny thing that I did," she says. But the most amazing thing happened: The boy looked up, gave her his hand and stopped crying. They ended up walking to a nearby bulkhead, where they sat down together. "First, I gave him a gentle but firm hug—I knew that had worked for other kids from Friendship Circle," says Rochel. Then I just started to rock with him, because that's how a lot of kids stim themselves to get calm."

The boy relaxed. Rochel doodled on an air sickness bag and traced her own hand, then his. Her husband brought over some markers. One of the young adults on the trip handed the boy a fidget spinner, which he liked holding to his cheek. A flight attendant gave him cookies. "People have asked me about the mom's reaction to all this," says Rochel. "I don't know! We were on the floor, and I couldn't see her. I hope she got to eat her meal!"

Over the course of the hour-plus he and Rochel were together, he also sat on her lap in her seat and watched cartoons and played with her Samsung phone, which he enjoyed turning on and off.
Finally, the boy jumped up and ran back to his mother. Rochel smiled at the mom. "My job was done," she says.

At the end of the flight, Rochel says, "the mother said, 'Thank you, I appreciate, I appreciate.'" Rochel asked about the child's name and where they were headed, then said goodbye. When her husband shared about what had happened on Facebook along with some photos, it spread fast. "While most of the passengers watched on with awe, little did they know that for Rochel, this is her life," he noted.

When stories like this make headlines, I tend to wish that they hadn't. That's because I dream of a world where lending a hand to a child with disabilities is an everyday occurrence that's not newsworthy, a world where where people get that a child acting out isn't doing so because he's misbehaving but because he's on sensory overload. Plane rides (especially delayed ones) can trigger a lot of behaviors in children with autism or sensory issues, as I well know from the plane turbulence of Max's younger years.

But another part of me is glad this story made headlines, given that there is still a fair amount of intolerance out there toward children with disabilities and, really, any child acting out in a public situation. We need actions like Rochel's to show people the way, whether or not a child having a meltdown has disabilities. "Everything we do at Friendship Circle is based on the philosophy that everyone is put into this world for a unique purpose, something only they can accomplish," she says. "And that's why everyone deserves respect, and friends."

Perhaps the friendship Rochel extended to this boy on that day will further encourage respect for children with disabilities—and understanding and empathy when they're losing it. Rochel firmly believes there was a reason she was on the flight that day, and hopes that the story's ripple effect will benefit others. As she says, "The amount one person can accomplish is limited, but when other people are inspired, it's endless."

Photo courtesy of Bentzion Groner

Friday, July 21, 2017

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

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: How to treat children and teens with disabilities 

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, July 19, 2017

How to treat children and teens with disabilities (hint: like children and teens)

If you have a child with disabilities, you've dealt with awkwardness, misunderstanding, ignorance and even rudeness from people. It can be frustrating and upsetting. If you don't have a child with disabilities, perhaps you've felt unsure about how to treat kids with special needs, or you haven't been certain what to tell your own children. It can be frustrating and upsetting.

I asked parents what they wished people knew about talking and interacting with their children with disabilities. Here, their heartfelt wishes and requests. So now you know—and it never has to be unclear or uncomfortable again.

Treat kids and teens with disabilities like...they're kids and teens 

"I wish people wouldn't talk to our kids like babies, or expect less from them. My favorite people are the ones who talk to Ben like any kid."—Carrie

"Don't ask me what Alex did at school—ask him."—Helen

"I've noticed a group mentality that occurs. When one person is kind and engages with my daughter like she's a full-fledged human being, treating her like they'd treat any other 10-year-old, others do the same. The thing I most wish is that people would not pretend that she isn't there when she tries to engage. It's striking how many adults, as well as children (mostly adolescents), will just flat-out pretend she isn't there. I have watched my daughter ask another child her age a question, and the child will completely ignore her. Most painful to me is when my daughter then, likely based on the social skills training she's received, answers her own question with something like, 'Well, I think you liked that movie too!' Said child will continue to pretend there is not another human being present."—Pamela

"My daughter can HEAR YOU even though she is in a wheelchair and nonverbal. She had therapists from school who yelled their instructions at her."—Kristina'

"My daughter is a dwarf and people tend to treat her like a baby because of her size. She came home from a sleepover where they went swimming, and her very good friend told her she couldn't swim in the deep end because she wasn't tall enough. So she got stuck in the shallow end with the girl's preschool-age sister while all her friends swam in the deep end. She can swim the length of the pool without assistance! It's a constant struggle."—Jennifer

"Our children are people with feelings and thoughts and emotions. They are usually so perceptive and good at reading people that if you happen to be a nasty turd, our kids will whisper (or say out loud) something hysterical about you that will keep us laughing for days, months or years to come."—Julie

"My daughter does not have the cognitive ability to understand very much, and she is nonverbal. In spite of that, she still needs to be acknowledged with a smile and a 'hello.'"—Jennifer

"People act so embarrassed, like they shouldn't be looking at the kid or they don't know how to act around them. But the truth is, you don't need to know anything to say 'hi' and compliment a kid on their looks or attire, just like you would with any 5-year-old."—Megan

"I wish other kids understood that humor is universal. If you find a YouTube video cute or a joke funny, chances are so will another child regardless of ability! I mean, who doesn't love baby goats?"—Genna

Patience: still a virtue

"You need to give some children a chance to process what is being said to them or asked of them. Repeating it over and over again quickly won't make my daughter respond in a more timely, socially-appropriate fashion. Every time you ask her the question, her mind needs to reset the processing of it all over again. Give her a moment and if she really doesn't understand you, then let's break it down for her to understand what's being asked of her."—Mary

"I always tell people to count to 10 in their heads before repeating themselves."—Heather

"Eye contact and body language! My son can't talk so he's super-aware of people, and he communicates with eye contact and body language."—Courtney

"Let my child guide the conversation, rather than force him to answer all your questions. Go with his interests, even if they mean nothing to you."—Heather

"My son's not ignoring you, sometimes he doesn't answer right way. It takes a little longer to process what he wants to say."—Stacy

"My particular spectrum kid doesn't always understand verbal cues. He's a slow auditory processor. But he does respond well to written words. Sometimes, communicating longer or harder things are better through words. But this is not every kid! One size does not fit all on the spectrum."—Melissa

Spare our children the pity

"Don't feel sorry for my son. This is the only life he knows. He doesn't feel bad for having his condition."—Belinda

"My 3-year-old is not an inspiration because he woke up this morning. You don't know anything about him except that he's in a wheelchair! Explain to me how exactly he is your hero?"—Amber

"My son is completely capable of being an a-hole, just like his siblings. His disability does not make him sweet or darling!"—Courtney

Spare them the stares and comments, too. (Also: Don't pet them.)

"My daughter is still a baby so her disability is hard to detect unless you stare, which people do. Staring is hard for me, but the 'well-meaning' comments really hurt. 'What a tiny baby for 10 months!' 'She must have been a preemie!' 'Her head is so small!' Also, 'She'll grow out of this.' I'm not a pessimistic person, but I know she won't grow out of it. It's who she is, and that's okay."—Jaime

"Please stop giving my kid dirty looks because she laughs super loud. She's laughing. She's happy. Come on. Especially don't give us said dirty looks when we're at the 4 p.m. showing of an animated movie!"—Phoebe

"My son was a preemie, what I hated hearing was how 'He will catch up, don't worry.' No, he won't. He has delays and is short for 15. He will be just fine, but he won't 'catch up.'"—Angela

"Do not attempt to hug my daughter or pat her on the head. She is not a pet. Offer to shake her hand. Make eye contact."—Teresa

"Keep your damn hands to yourself. My daughter is tiny, nonverbal and uses a wheelchair. People come up and just pet her like a cocker spaniel."—Jo

Don't make assumptions

"I wish people would not assume that my son has certain traits, challenges or tendencies just because of his diagnosis. They're often wrong."—Lena

"Don't treat children with disabilities as if they are incapable of doing a multitude of things. Don't treat them as though they have zero capacity to cope with the most minor of disappointment or dissatisfaction, either."—Amber

"Not all children with disabilities are the kind you can see. My son's disability is mental, but otherwise he seems like most children. He tries so hard but he constantly feels bad because other kids make fun of him and some adults think he acts out. He's not perfect and I don't give him a pass on his behavior, but some of it is beyond his control."—Robin

"Just because my son can't keep up in some ways, don't assume he can't in other ways."—Betsy

"Just because my son is nonverbal doesn't mean he can't understand what people are saying to him or about him in front of him!"—Kristie

"Don't assume that my baby likes to be touched or caressed and likes peek-a-boo. My daughter has many sensory issues, on top of her cerebral palsy, that are invisible. Quite possibly, the most difficult comment to hear is, 'Well, she looks normal.' I'm not even sure how to take that."—Jessi

"I wish more people would think about disability like any other difference, and talk to their children about it. It's not offensive to talk about disability—it's offensive to act differently toward someone with a disability. People are always so afraid to say or do the wrong thing. Presume competence and the rest will follow."—Jen

Teach your children well 

"It's not personal. The fact that my son has difficulty looking at you doesn't mean he doesn't hear you or is uninterested. He actually loves meeting new people."—Jackie

"Don't hush your child when they ask a question about my child in a wheelchair. Answer his questions. If you don't know the answer, politely ask if your child can ask a question. This is how we eliminate the stigma and include all children in the conversation. Just because he's nonverbal doesn't mean he's not there. Interact with him. Talk to him. Learn his responses. They're subtle, but dynamic."—Amber

"Please avoid talking with your kids about our children's differences being 'better' or 'worse,' which further alienates them."—Betsy

"Teach other kids to include kids with disabilities in activities—like if they're at a party, and playing a game, ask the child if they want to play, too."—Jamelah

"It's okay to ask questions as long as they aren't judging. I hate when parents tell their child to be quiet when they ask things like 'What is on your legs?' Instead of embracing differences, they learn to be scared because the parents make it a voodoo topic. Just ask the question and learn the answer, it might be the start to a friendship!"—Rachel

Tuesday, July 18, 2017

Are you happy very so much?

"Are you happy very so much?" Max wants to know. We are en route to see Despicable Me 3. Max already saw it with Dave, but liked it so much he wanted to go back. This time, I have the pleasure.

"Yes!" I tell him. "I'm excited to see it!"

Max beams at me. He's happy that I'm happy.

"Happy very so much" has been a Max phrase for several years now. I used to correct him, but I came to my senses because it is one of the more awesome things he's ever said.

You know how people always ask "How are you?" but often don't actually care to know? It's not like that with Max: What you hear is what you get. When he says "How are you?" he truly wants to know. And when he asks if you are happy, he really, really wants you to be happy.

It's funny, Max never uses those words to describe himself. He'll just say "I'm happy!" or "I'm excited!" or "That's awesome!" But this boy has the biggest heart. And so, he doesn't just want me to be happy—he would like me to be happy very so much.

Max asked me the question again this weekend when he I told him that a couple of old college friends were coming to visit: "Are you happy very so much?"

"Yes!" I said. "They are my friends, it makes me happy to be with them."

He smiled.

Are the words childlike? Sure. But the effect is ageless. Few things make people feel as warm and sunny as knowing that someone genuinely cares about their state of contentment.

This boy of mine is looking out for other people's well being. Way to go through life! It makes me seriously happy, very so much.

Monday, July 17, 2017

That time he made us dinner for two, but then....

I'm not much of a cook, but Friday I decided to make dinner for Dave and me after Max and Ben went to sleep (Sabrina's is at camp). Turns out that Max had other ideas.

Prep was a no-brainer because I'd gotten meal kits from Terra's Kitchen, a food delivery service that specializes in healthy entrees. We fed the kids dinner, I tucked Ben in, and got cracking on the BBQ Salmon with Caramelized Pineapple Relish and yes, I got hungry just typing that. Max was about to head upstairs with Dave but he spotted me opening the ingredients. He came over and made a stirring motion with one hand—as in, he wanted to help cook.

I really liked the idea of Max cooking for us. He requires a fair amount of help with life skills, and I thought it would be empowering for him to do something for Dave and me—and good for his perspective. With all the attention Max receives, he can be a bit egocentric (although Sabrina is the same and my friends gripe that their children sometimes act that way, too, so there ya go: KIDS). Besides, Max enjoys making food and I'm happy to nurture that passion. It's a great fine-motor-skills workout, plus I'd love for him to learn to cook...for US! (See: "I'm not much of a cook.") 

The ingredients were super-fresh, good-looking and pre-packaged and pre-cut. Max stirred together the brown sugar, chili powder, paprika and cumin for the salmon rub as I chopped up the pineapple, onion, and cilantro for the relish. The results, accompanied by jasmine rice and green beans, were impressive.

Max thought so, too. Because he sat down at the table to join us. 

"No, Max, you're going to sleep and Daddy and I are having dinner together!" I reminded him.

Uh, no. Max wanted to stay. 

"It looks good!" he pointed out. It really did:

To be sure, teaching Max that Mommy and Daddy deserve time alone would have also been a good lesson. But we caved. Turns out Max only wanted the jasmine rice, a boy after my own carb heart. And so, we gave him most of the rice. And then the three of us had one very nice, non-romantic dinner.  

Friday, July 14, 2017

The Special Needs Blogger Weekend Link-up: summer reads

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: This wasn't just a walk to a lemonade stand, it was steps toward independence

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, July 13, 2017

This wasn't just a walk to a lemonade stand, it was steps toward independence

Max spotted the lemonade stand when we drove by in the car. Back at the house, he said he wanted to go get some. 

"Max, do you want to get lemonade by yourself?" I asked.

"Yeah!" he said. 

"You sure you're OK going alone?" I asked.

"YEAH!" he said. 

The kids had set up shop about half a block from our home. To get there, Max would have to cross a wide street. Our neighborhood is low-traffic but still: Big street? Walking alone? Yikes.

I shook off my concerns: Max needs more independence, and I need to free myself of the anxieties that can hold him back.

I handed him a dollar and walked him onto the porch. He carefully headed down the stairs. On the sidewalk, he turned to give me a big smile as if to say "Chill mom, I'll be fine!" Then he walked out of my sight, and my heart tightened.

I am not generally overprotective with Sabrina or Ben. I let Sabrina go to sleepaway camp, at her request, at age 9. I have no problem with her walking to town with friends or cruising the mall. I let Ben jump on the couch, ride his toddler mobile wherever (OK, so I'm trotting behind him) and otherwise explore the world. With Max, though, I am more cautious. He's a strong boy with his wits about him, but still, I worry about him being on his own. He has never before walked around our neighborhood alone. 

I willed myself to go inside—I didn't want to be on the porch when Max returned, so he wouldn't feel watched. I busied myself with cleaning up the kitchen. About five minutes later, I heard a knock on the door. A dad was standing outside with a cup of lemonade and a beaming Max.

I knew what had happened: Max would have bought the lemonade, then had some trouble taking the cup the girl handed him. Max is capable of holding one—it just takes him a bit to wrap his fingers, which tend to be stiff, around it and grasp it firmly. So the father gave him a hand, and an escort home. And wouldn't you know it, I had mixed feelings about that. I appreciated the help but at the same time I'd wished Max had done it all himself, even if he'd spilled some lemonade. 

That's the thing about Max: It's not just me who wants to be there for him. Other people do, too. They see a teen with disabilities and assume he cannot do stuff. Years ago, I had to teach Max to speak the words "I need help!" And now, I realized, I have to teach him to say "I'm OK, thanks!" and "I've got this," and program this words into his speech app—and his psyche. Real independence starts with feeling secure that you can do things on your own, not just cause your mom nudges you to. 

These are all steps toward independence—for Max and for me. 

Wednesday, July 12, 2017

Don't lose that bus: The perils of a child's object of affection

"Have you seen the bus?" Dave asks in a panic. We're with Ben at an aquarium, and Ben is pointing to the fish in a tank.

"Yes, it's in my bag," I reassure him.

We have this exchange multiple times throughout the day. That is because Ben is obsessed with a little yellow metal bus, and our lives are dependent on it being readily available. Whenever we're out, Dave and I regularly glance at Ben's hands to make sure he's still clutching it. If he drops it when we're on the highway and Dave is driving, I have been known to perform Cirque du Soleil acts of gymnastics to retrieve it. At home, we're forever hunting it down.

Whenever it's AWOL, Ben holds out his hands piteously and says "BUSSSSSSSSS!" Like this:

"BUSSSSSSSSSS! BUSSSSSSSSS!" That's what Dave and I wake up to every morning, as Ben stands in his crib. For a while there, I was putting him to sleep with it then sneaking it out once he nodded off, but snoozing next to a hard metal object is not recommended in any of the baby books and I put my foot down. Otherwise, Dave, Max, Sabrina and I are are Ben's bus keepers, suppliers and enablers. Ben used to consider me his source of milk; now he considers me the person capable of retrieving BUSSSSSSSSS! from beneath the couch.

I used to worry that Max's lack of devotion to a blanket, lovey or toy as a baby was indicative of a lack of development; back then, I over-analyzed everything he did (or didn't). He later more than made up with it with his fascination with all things Lightning McQueen and then, fire trucks. Sabrina was obsessed with "habifiers" (pacifiers), and it was easy enough to have a ready supply of both. Only now: BUSSSSSSSSSS!

BUSSSSSSSSSS! is about a month old. I picked it up at a toy store before a lunch out to occupy Ben, a plaything that seemed overpriced at $9.99 but would be worth every cent if it enabled me and Dave to eat. Distraction? Bwaaaaaaaah-ha-ha! Little did we know. Ben takes it everywhere:

The beach

Nice restaurant 

Hotel hallway

The Wetlands Institute in NJ

Grandma's house


Keeping track of it is a challenge, given that BUSSSSSSSSSS! is all of five inches long and Ben enjoys depositing it in random places: in drawers, closets, cabinets and baskets; under bookcases and the hutch in our dining room; and once, in our garbage. That was fun. When I ask him where BUSSSSSSSSSS! is, he just looks at me curiously. I don't get why nobody's yet come up with toys that have built-in trackers. Just think of how much time parents could save if we no longer had to search for errant toy pieces or BUSSSSSSSSSS!

My reward for being BUSSSSSSSSSS!'s handler: When I find it and hand it back to Ben, he reacts as if it is the first time he has ever laid eyes on it.

Ben is similarly obsessed with actual buses. "BUSSSSSSSSSS!" he screeches when Max's school bus shows up or we're walking down a street and one passes by. He also calls trucks "buses" so cruising around with him is very exciting. The other day, we hung out for 15 minutes on a street corner so he could gaze adoringly at a parked school bus. 

Dave keeps warning me that we need to get a backup. Ben tolerates the plastic buses I've gotten, but they are not BUSSSSSSSSSS! The store where I bought BUSSSSSSSSSS! isn't that close to our house, I haven't been able to find another locally and the options on Amazon don't totally look like BUSSSSSSSSSS! I really need to get on that, though, as all hell will break loose when BUSSSSSSSSSS! inevitably does disappear for good.

Pray for us.

Tuesday, July 11, 2017

When parents show intolerance like this, it sucks for everyone

This weekend, my blood pressure spiked as I read a post called No, Your Kid Can't Have My Subway Seat. Writer Stephanie Fairyington and a friend were riding a train in New York when a family got on; she said the mom gave them the stink eye for not giving up a seat for her son. At some point, Fairyington reported, the mother told her child, "Don't worry, sweetheart, someone will get off soon and you can have a seat." As soon as a seat was free, the mom hustled her child into it.

The writer, a mother herself, went on to rail against coddling children and not giving them space to grow or learn to hold their own. "I think giving up one's seat to a kid old enough to stand on his or her own is a bad message and a symptom of a culture of parenting in America that enfeebles kids," she noted. Some commenters pointed out that while they wouldn't expect an adult who's been working on their feet all day to let a six-year-old snag their seat,  children do tend to lose their balance easily on the train and get poked in the face by handbags.

That writer acknowledged the existence of disabilities and that the need for a seat might not be apparent for those with the invisible kind, but that right there should have been reason enough to not write the post. Perhaps that child did need a seat for a medical reason that wasn't visible. You never do know—which is why taking the stance that adults shouldn't give up their seats to a child preaches intolerance.

As I've learned from raising Max, intolerance can be much of a handicap to people with disabilities as their disabilities.

It's rampant. There was another irksome post a few weeks ago on in which a mother took a stand against parents who let their children look at iPads during dinner, taking them to task for ignoring them, failing to teach them how to converse and setting a bad example.

I've been that "bad" parent. Max used to have major sensory issues, and for years having him watch a movie or videos on an iPad or iPhone in restaurants was the only way our family could go out for dinner. We used headphones, so we wouldn't disturb anyone. But people looking at us might well have judged us as being self-centered, crappy parents. (Writer Pauline Campos wrote a great rebuke pointing out that children with autism like her daughter use devices to self-regulate.)

Strangers might think I suck as a parent for any number of reasons related to Max's disabilities: His meltdowns in public places when his sense of order is disrupted could say that I don't know how to control him. His food-splotched clothing (he's not the neatest eater) might say that I don't care about his appearance. The very way he downs food—he tends to shovel it in rather quickly, because he's trying hard to hold it on the spoon and not drop it—means I haven't taught him manners.

Meanwhile, as people judge us they are also making assumptions about our children: they are spoiled, they are bratty, they are messy, they lack manners.

It's a lose-lose-lose, all this intolerance and judging and assuming. For us as parents, for our children and for these people's children. I feel sorry for kids being raised by parents who see the world through a pinhole view of what's good and right: No ipads at restaurant dinner tables, ever! No giving up seats on trains to kids! How can their children grow up to be open-minded adults who are aware and accepting of differences? How will their children learn that good old human decency comes in many forms?

Perhaps this seems like small-potato stuff compared to teaching children acceptance biggies like race and religion. But then, enlightening children about diversity should include children and adults with disabilities. It's been said that people with disability are the last minority considered acceptable to marginalize and disrespect in society. Parents have the power to change that. They could even use narrow-minded posts like these as conversation starters with children: Do you think people should give up their seats on the bus to other people? Why? How can you tell if someone needs a seat? Do you know why you can't always tell?

Raising children who treat people of all abilities right means encouraging consideration and empathy. It means explaining to them that people have different needs, but everyone wants to feel accepted and respected. It means helping them understand that one size does not fit all—on the bus, at the restaurant or anywhere.

Also see:

30 ways to respect kids and adults with disabilities

Monday, July 10, 2017

Living the dream: Hello, Fireman Max

"No, Fireman Max!" said Fireman Max, correcting the counselor who had just called him "Max." Dave and I were checking him into the Double H Ranch for five days of camp, and Max wanted to be sure people knew his proper name.

He had his trusty Fireman Max hat on. He doesn't wear it out much anymore, but when he went off to a different camp the other week and when it came time to head to this one, he wouldn't leave home without it.

"Max, do you really need to wear that hat?" Dave asked as we left the house. 

"YES!" said Max. 

Dave doesn't really appreciate it when Max wears that plastic red firefighter hat these days; he thinks it makes him look juvenile. Which it does. But I'm of the mindset that if it makes Max happy, so be it. At camp, he seems to wear it as both a point of pride and a mark of distinction. 

I continued talking to the nurse about meds while Max and his counselor roamed around. All of a sudden Max was back in a firefighter jacket and pants. The camp had it on hand for shows. "It's FDNY!" Max noted (Fire Department of New York), and sure enough the logo of his favorite firefighters was right there. 

Max looked ecstatic. Dave and I both smiled. Everywhere we walked afterward, people said "Hello, Fireman Max!" and he waved. An hour later, I finally got him to take off the outfit because he looked hot. He watched carefully as his counselor folded it up and put it in his backpack, for safekeeping. 

I'm not sure where Max's firefighter plans will land him. For now, he continues to delight in wearing his dreams on his sleeves. Maybe it doesn't do much for his image as a teen, but it works for the image that Max has of himself in his head. I think that's pretty awesome.

Friday, July 7, 2017

The Special Needs Blogger Weekend Link-up is live!

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 drinking cups for children and teens with disabilities

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 other great posts!

Thursday, July 6, 2017

When a parent of a disabled child is accused of child abuse

I gaped at my computer screen as I read a message from a mom I've known online for years. She's a teacher with three children, including a medically complex one with disabilities. Someone had reported her to her state's child protective services because her daughter had a significant diaper rash and bruises, and is underweight.

This mom was understandably shaken. I know her as well as any friend I've made through the blogosphere over the years. She's smart, she has a great sense of humor, she cares deeply about all her kids and she has done her best for her daughter. Her daughter, she noted, bruises easily; the diaper rash was being treated by a pediatrician; and she is under a GI's care for her weight.

A caseworker paid a surprise visit to her house, examined her three children's bodies, inspected the home (including examining the fridge's contents), asked a long list of questions about her parenting style and requested to speak with each child separately, away from the parents. She said she saw nothing that concerned her, and that the case would be closed after she spoke with two doctors and a friend of the family's. While the caseworker was not allowed to say who reported her, when my friend heard that it came from someone who "had" to she was pretty sure it was a new classroom paraprofessional.

It's true that "bruises easily" is something you might hear an abusive parent claim. It's also true that children with disabilities are more vulnerable than others to abuse, especially ones who have challenges with communication or who don't understand social situations well. While there's a lack of large-scale studies on the topic, approximately one in three children with a disability are victims of some form of maltreatment versus one in ten nondisabled children, as this Arc paper notes.

But here's the thing: Children with disabilities can be more likely than others to have weight issues, due to eating challenges, and to hurt themselves because of physical impairment. As their parents, we are acutely aware of this. Max sometimes trips when he walks or loses his balance on uneven surfaces. Before he could really communicate, when he took a bath at night I'd occasionally find a bruise or scrape on one of his limbs that he couldn't explain, and it would unnerve me. Had it happened at school? On the bus? With the babysitter? How? He has a small chip on one of his front teeth; to this day, I am haunted by how it got there.

At the same time, these mystery injuries make parents of children with special needs particularly
susceptible to coming under fire. And as mothers and fathers who put super-human effort into taking care of our children's developmental and medical needs, it can be a crushing blow to think that anyone suspects us of doing them harm.

A couple of months ago, Max was headed up our basement stairs after an occupational therapy session, except he got overly excited and went too fast. He fell backwards, his tumble broken by a utility cart. Max got some pretty nasty scratches on his back, including one long red one that ran from his shoulder to his lower back.

His school nurse emailed me that week: "Just want to confirm with you about the long scratch on Max's back, he said he fell down the stairs at home."

I felt a twinge of OMG and a defensive reaction of "Does she think we did something wrong? How could she think that?" But I got a grip and realized she was doing her job, and looking out for Max. I responded that it happened following a therapy session as Max climbed the stairs while the therapist was there, and that was that.

I am not saying that parents of kids with disabilities should be given the benefit of the doubt when something seems to be up with a child—to not report suspicions would be doing children a disservice. Besides, teachers and other school professionals are legally required to report possible abuse or neglect. There are awful parents out there who do terrible things to even the most defenseless children. The safety guards set up by schools and states exist for good reason.

Just know that if you ever get questioned by a teacher, a nurse or an authority about your child's well-being, try so hard not to take it personally, as I learned and my friend found out the even harder way. Logically, she gets that—her case was closed after three weeks as "unsubstantiated"—but her heart isn't yet there.

"Moving forward, the difficult part will be working with the school and trusting them with our nonverbal daughter, when we know it was a staff member who called," she says. "I have to believe that whoever did this did it out of concern for my daughter, although it kills me that someone thought she was neglected or abused. We are far from perfect, but we try damn hard. We have fought for this girl since the minute she was born, and that will never change."

Wednesday, July 5, 2017

This is how you look when you climb into a car on your own for the first time

I'd just turned my back on Max for a minute to buckle Ben into the car seat. We'd had lunch at Max's favorite Italian eatery and after polishing off a ginormous portion of baked ziti, he basically waddled back to the car.

"Hold on a sec, Max," I told him, planning to give him a hand getting into the front seat, like Dave or I always do.

But I didn't have to. Because when I turned around to the front seat, Max was already sitting there.

Holy ability! Especially with a belly full of pasta!

It was yet another major milestone not in any of the development books.

As is sometimes the case with progress in Max's life, I never saw it coming. We've repeatedly shown Max how to get himself into the car seat—lift butt onto seat, swivel legs around—but he's been hesitant and seemingly uninterested to attempt it by himself. Part that resistance has likely stemmed from the fact that this kind of movement is physically challenging for him, plus he's used to us helping him.

As is always the case with progress, Max does things on his own timeline.

As I'm writing this, it occurs to me that I have no idea whether Max feels pressure when we prod him to progress. His whole life, me, Dave and a whole lot of therapists have been trying to get him to do stuff—sit up, crawl, pull to stand, take a step, hold a block, say "mmm!" and "aaaaa!", press a button, grasp a spoon, hold a cup, hold a crayon, say "Max" and "Mommy" and Daddy," hold a pencil, type a word, push the pedals, the list goes on and on.

I could not know what it feels like to be regularly urged to do things that your muscles do not naturally want to do. Perhaps to some extent, Max is used to this; he's had therapy since he was two months old. But maybe, as he matures, there's some teen rebellion happening. As in, "LAY OFF ME, MOM, I'LL DO IT WHEN I WANT TO!!!"

Driving home I asked, "Max, will you do that again tomorrow?"

"NO!" he said.

And sure enough, he didn't. But the huge grin on his face said he was super-proud of himself.

I've said before that as exciting as Max's firsts are, the second (and third and fourth) times he does something are even sweeter, because they mean that the action or behavior is really kicking in.

Still, standing in that parking lot, I felt those "He did it! He did it!" fireworks going off in my head, yet another little-but-big moment I'll never forget.

Monday, July 3, 2017

School vs. camp: camp wins!

For most of his school life, Max has taken part in the Extended School Year (ESY) program, which starts after July 4th and goes through mid-August. Not this summer. For the first time, we skipped school and let him go to camp. A bunch of them, actually. 

Did I have some should-we-be-doing-this pangs? Yep. 

Did the fact that you're only a kid/teen once win out? Oh, yeah. 

For the past seven years, Max has traditionally gone for just one week of camp to the amazing Elks Camp Moore, for kids and teens with disabilities sponsored by their local Elks Lodge. Every camper has a one-on-one counselor. There are activities galore: swimming, arts and crafts, a magic show, dance parties, roasting marshmallows and other camp awesomeness. 

Last summer, we pulled Max out of school so he could attend a Camp Ramah inclusionary program, Tikvah. He was only supposed to go for two weeks, but he begged to stay for a third and we let him. 

Max has thrived in camp. His independence has surged. He's made friends. He's charmed the ladies. He's tried new activities. He discovered that he loves being in shows; last summer at Camp Ramah, they literally could not get him off stage. At Camp Moore last week, Max raised his hand every single time the magician asked for a volunteer. 

Max begged to go to the full Camp Ramah program this year, four weeks long. And we went for it, even though the high school Max is attending recommended ESY. We don't think he'll suffer from any major educational regression. I asked his eighth-grade teacher to put together a binder of worksheets, which she kindly did, and the camp director is cool with him doing one daily. He can also do IXL, the homework practice site he loves. We'll see how it goes.  

Max is also spending a week at Double H Ranch, one of Paul Newman's Hole in the Wall camps for youth with critical illnesses and neuromuscular disabilities including cerebral palsy, muscular dystrophy and spina bifida. Rounding out his camp extravaganza, he'll be doing a week of day camp through the Friendship Circle. We're grateful to have all of these camps in his life; it hasn't always been easy to find options for him. I once toured a camp that followed the ESY program, except it wasn't a good fit for Max. 

Sabrina will also be in camp for a chunk of the summer, and with only Ben at home, it'll kinda-sorta be like a staycation, other than the fact that Ben hits the ground running at 5:30 a.m., pausing only for meals, an hour nap in the afternoons and to stoop to observe the occasional ant crawling around our kitchen. 

Max has been counting down the days, and reminding me of the essentials he needs to take to camp: a tub of chive cream cheese (he's obsessed with it), avocados, a canister of whipped cream and his trusty Fireman Max hat. We're excited for him. He works so hard during the school year; he deserves time off. Dave and I want him to have the same great memories we do of time spent at camp. 

Max's life may be unlike his peers' in various ways, but he has the same quintessential right to good old summer fun. 

Camp, camp and more camp, here he comes! 

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