Thursday, May 25, 2017

Finding a school for your child with disabilities: What you can learn from our journey, part two


This is the part two of our journey finding a high school for Max (part one is here).

One day in November, I went on a tour of the school Max was interested in going to mainly because his friends were there. It's a school mainly for students with Down syndrome, intellectual disability and autism. In many ways, it's similar to the school he is in now. Students are grouped by abilities, not age. The student-teacher ratio is 4:1, with a maximum of 12 students per class. I know parents who have children there, and they've all raved about it.

There are three vocational classes a week, a good life skills programs, meet-ups with students from other schools and a range of extracurricular activities. Students take regular trips into the community and to the local library. They have an excellent job skills program and a dedicated employment agency for graduating students. It was all good, other than the fact that Max would receive only one physical therapy session a week, not two, as is the school's policy no matter what a child's IEP.

As I sat waiting for my tour, I heard "It's Max's mom!" A former student from Max's class, one of his friends, ran up to me and gave me a hug. She was en route to cooking class.

"Are you happy here?" I asked.

"YES! Max should come here!" she informed me.

Max spent a full day at the school. When I returned to pick him up, I ended up standing in the lobby with the principal, the vice principal and a couple of staffers. A teacher brought Max over, who promptly burst into tears. He jabbed at the ground and said something.

"Max, what is wrong?" I asked. Then I realized he was saying, "I want to go here."

The principal reassured him that was very possible. The school accepted him the very next day. After that, Max started calling it his "new school."

I wasn't done yet, though; I still needed to see schools with integrated programs.

As the parent of a child with disabilities, you try not to project your own desires, wishes and wants onto your child. Yet even though Max had decided he was going to that school, I felt I owed it to him to check out ones where he would have peers both with and without disabilities, to prepare him for the real world.

Max has a good life, but between school and his activities, he exists in a special needs hothouse. He does not have friends who are typically developing other than Avi, a teen he hangs with once a week through a Friendship Circle program. Although I do not yet have a sense of what adult life will mean for Max, high school seemed like a ripe time to expand his existence. Dave agreed.

There weren't that many choices for integrated programs; our own town didn't have anything that was a fit for Max. I had our case manager reach out to another town's public school with an integrated program, along with a school that was not geographically desirable but I'd heard great things about.

I met with the program director and social worker at the local school (doing a school search can be a fairly time-sucking process, yet another reason why it's good to start early). I noted that Max had academic challenges. I also said he loved school, he was eager to learn, he was curious and he was amazingly social. They decided to have him spend a day at school and dropped him off. Max would be in one of several classes solely for students with intellectual disabilities. Integration was relative; at this school and similar ones, it wouldn't have been possible for Max to have been in a mainstream class, even with an aide, because academically he is not at his peers' level. All classes in the school came together for lunch and classes such as art and music.

I picked up a very happy Max. He'd done well that day. But the program director told me he'd need an aide. Max requires someone to help with toileting, and no aide in the class would do that (pulling up and down pants: still a work in progress). Plus opening the bathroom door and other doors in the school would be a challenge—you needed to first hold up an ID card, then pull a big door handle and heavy door

On the way home, Max said he wanted to go that school. Within a few hours, though, he reverted to saying he wanted to go the other one, where his friends were.

In the next couple of months, I had a conversation with the head of a program at another out-of-district school that came recommended by a mom. The program was crowded and they were on the verge of purchasing a new building, but there was no guarantee things would be in place by September. After sitting next to a mom at an event and hearing great things about another program, I had our district send over Max's records to that school too. Our case manager got back a faxed letter that said, simply, the school could not "accommodate" Max.

I asked her what that meant. She did not know. Upset that Max had gotten turned down without a meeting, I called to speak with the program director and got her assistant on the phone—who explained the program was already at capacity and was not accepting out-of-district students. Ah. So it was a quantity, not quality, issue. I emailed the director and noted that it would be much more of a consolation to parents if she could just specify that in correspondence, rather than the vague "could not accommodate."

The worst rejection of all came from the far-off school. Our case manager said they had turned Max down because they felt their program was too "fast-paced" for him. I asked to know more. It turned out they had come to Max's class to observe another student, and that while they were there they had also done some sort of observation of him. Without my consent. Without talking with any of the staffers about Max, or with Max himself.

I was furious. I reached out to the social worker from that school who'd been part of the observation team and the head of the program, whose sole response was that I should be in touch with my case manager. I called the superintendent of that district and expressed both my disappointment that they had turned Max away, and outrage that they had done any sort of observation of him without my consent. She apologized, but didn't have more to say. I spoke with an advocate, which is when I learned the school had the legal right to reject him, although she wasn't sure that they'd legally had a right to observe him without permission. I chose not to pursue that.

While IDEA entitles every child to a free and appropriate education, every child is not an appropriate fit for every private school program," noted Renay Zamloot, a non-attorney education advocate. "Even though you believe your child may be a good fit for a program, the professionals who reviewed his file and observed him do not agree. They do not think he would receive an 'appropriate' education because it is not a good fit."

For a while, I was completely dejected, which is unlike me. I have typically succeeded in getting what is best for Max, whether at school, in programs or with his therapies. I felt like I had failed him, because in my mind, I did think an integrated program was best for him. Wrapped up in all of this were my anxieties about Max's future. I felt like my high-school choice would make or break his life as an adult. Rational? Well, not totally. But when are emotions ever rational?

It would take several things to help me accept that a program that had turned Max down as not being right for him likely wasn't right for him—and that sending him to the school he'd always wanted to was best possible choice.

First, I reached out to an academic higher-up I've long known and talked with her about what I'd been through finding a school for Max. She noted that she had cousins at the school in one of the programs from which he'd been rejected. Her cousins were not mainstream kids in that they were musical, artsy types and she said that the students there had not been very welcoming to them—a mindset that she felt would not be beneficial to Max. She noted, too, that integration is not always the right answer. As she said, "We want our kids to be as embraced as possible."

Then I had a heart-to-heart with my two closest friends over lunch. I told them about my desire for Max to have friends of all abilities. One of them talked about a friend of her daughter's who has intellectual disability. The girls have grown up together. But her daughter had grown increasingly distanced from this other girl, who at the age of 13 was still into playing with dolls. On occasion, the two hung out but they did not have much of a connection. I understood the point, even if it was painful to hear.

A few days later, I posted the same question in my local Facebook group and in one for parents of children with cerebral palsy: I asked if anyone had a student with physical and intellectual disabilities in an integrated program in a public schools and then I asked whether any of them had so-called typical friends.

One mother summed up the sentiments of many: "Despite being in inclusion classes since third grade and being quite friendly, he has never had neurotypical friends. Never been invited to a birthday party, never asked on a playdate. Our community talks a lot about inclusion, but the reality is closer to tolerance and often, they are just ignored—they exist alongside, but are not really part of any social groups."

Not a single parent said that their child had friends without disabilities.

It was a reality check, and a sign. Expecting any student to walk into any high school and make new friends can be a tall order; teens are clique-ish, and can be slow to embrace new peers. Expecting a new student with disabilities to be not just accepted by peers at school but be true friends would be damn near impossible, even for a boy as charming as Max.

And speaking of teens are clique-ish: Max wanted to be with his friends at the new school. He was being clique-ish, looking to be with his own kind, like any teen. Who was I to deny that to him?

We chose the private school for students with special needs. Max wasn't particularly excited when I confirmed it, as he assumed all along he'd be going there. He's already guided his grandpa to see it one Saturday morning (Max remembered how to drive there after just one visit). It's not far from where we live, so Dave and I will be able to juggle work and picking Max up from after-school activities. I will have to find other ways for Max to have those integrated experiences, although I'm still not sure how.

The other week, I went to a fundraiser for his chosen school. Some students sang; they sounded pretty good. Then I got to chatting with the mom seated next to me and I stopped paying attention to what was happening onstage. When the lovely background piano music stopped, I looked up to find a student standing up from behind the piano and taking a bow. I had figured a professional was playing.

During the drive on the way home, I thought about that piano player. I thought about the fact that Max would be at a school where students had a range of abilities, same as with his elementary school existence. Max would be challenged, motivated as always to do his best, and in good hands.

It was time to stop wishing for what I thought was best for Max, and accept what truly was.

Tuesday, May 23, 2017

Those times when you think about your old life


I don't think much about the responsibilities I have as a parent. This is because I'm too busy being a parent. Sometimes, though, they weigh heavily on me, especially when I flash back to my pre-kid life.

There's this poor plant in our bedroom that's very neglected. It's an allium, and every so often a purple-pink flower blooms that looks like a firework and wows us all. This weekend, when I remembered to water it, I noticed the leaves were pretty dusty. All of a sudden I flashed back to my bedroom in the apartment I rented during my twenties.

I had a little multi-colored pepper plant I kept on a stand. I loved that thing. One day, I noticed white specks all over the underside of the leaves. I got our downstairs neighbor to pay a house call, a woman in her thirties who seemed to know about such things. She told me they were aphids, an insect. Ugh.

I tried my best to rinse off the leaves with dish soap, and checked them obsessively. The specks stayed. Finally, I had to toss that plant.

I stood there in our bedroom mulling over the fact that I used to have time in my life to wash plant leaves, and that back then an ailing plant was such a great cause for concern.

OMG, look at everything you deal with now, I thought.

As if to prove that, yesterday brought several big-deal happenings. In the afternoon, as I sat playing with Ben on the living room floor, I noticed a pea-sized lump above his collarbone and below the benign cyst on the side of his neck that we'll eventually have to remove.

I felt sick to my stomach. Scary thoughts flooded my head about what that lump could be. I jumped on the phone with the nurse practitioner at the doctor's office. Within seconds, she'd called up the imaging of Ben's neck. She noted that the cyst was a pretty lengthy one that extended from his neck downward, and that another part of it was just now becoming visible. We'd discuss the surgery in more detail at our next visit.

The panic dissolved. But I kept thinking about that pepper plant, and how relatively carefree my life had been back then.

Later in the day, Dave forwarded me an email with the subject line "County mosquito notice." As if my chest didn't instantly tighten up enough, he wrote, "Bug spray needed bigtime." Thanks to the excessive rainfall of recent weeks, our county would be conducting an "aerial larval control operation" using naturally-occurring compounds. Good news: They're on it. Inescapable bad news: We are in for one helluva mosquito season. I have not been one to worry about Zika...until now.

In the early evening, the headlines started popping up about the explosion and fatalities at the Ariana Grande concert in England, leaving me sad and concerned about the kind of world I'm raising my kids in.

Then I got drawn into the business of bedtime.

Ben wanted to read and re-read a book about trains. He made cute faces in the bathroom mirror as I held him and brushed his teeth with the baby toothbrush. He pointed to the lights so he could switch them off. I put him down and watched as he sucked his thumb. He only does it when he's falling asleep, and every night it makes me melt.

Then Max and I did a book report about Crispin, an atypical dragon who breathed teddy bears, whipped cream and everything but fire. Max gave a happy squeal because he loves whipped cream. His squeal is one of my favorite sounds ever.

Sabrina was in her room doing homework for most of the night, but at 8:30 she came downstairs, we talked about weekend plans, and she said "Good night, Mommy" sweetly as she always does.

Once again, I was reminded that I wouldn't trade these days for any.

Monday, May 22, 2017

Learning to own your child's differences


The ideal, of course, is for your child with disabilities to own his differences. Max has never paid much attention to what other people think of him, for better and for worse. For me, it's been an evolution, and I'm in a pretty good place as this weekend revealed.

Our family attended the bar and bat mitzvah of twins Lucy and Josh, the children of one of my best friends. We all got dressed up. Max decided to wear his new red Chucks. My younger mom self would have been concerned that they would make Max stand out from other guests. This mom thought, He is going to look so cool. At temple, Lucy glanced at Max's sneakers and gave him a thumbs up, and Max beamed.

As we sat through the beautiful service, it occurred to me that we were likely going to run into a problem. Dave and I had been given the honor of opening and closing the ark for the Torah scrolls to be put away, along with another couple. I realized, belatedly, that Max was going to want to come up there with us. When I explained that he needed to let Dave and me go alone, he got weepy.

My younger mom self would have gotten anxious. This mom decided what would be would be. I knew that my friend, one of the more caring people in this world, would get it.

The rabbi called me and Dave up to the ark. Dave happened to have stepped out of the sanctuary with Ben, and so Sabrina dashed off to get him. I walked up and stood next to the other couple. I watched as Max sat there and got worked up and Dave struggled to get him to stay put.

I motioned to Dave to bring him up.

"You sure?" Dave mouthed back.

I caught the eye of my friend, who smiled and said, "It's OK." I nodded at Dave.

And so, Dave and a teary Max approached the ark.

My younger mom self would have would have worried that Max had ruined the moment for my friend's family. My younger mom self would have stood there and felt all sorts of uncomfortable about what people were thinking. That mom would have also probably had a moment of self-pity about how difficult her life was.

This mom was grateful for an understanding friend, and if other people in the room weren't the same, so be it. This mom stood calmly in front of the ark, smiled at her son, kissed him on his head, and helped him close it.

There were two big buses outside the temple to transport Lucy and Josh's friends to the party. Max didn't know any of them, but decided he wanted to go because he loves bus rides. I asked Sabrina if she wanted to accompany him.

"No, that'll be weird!" she said. "The buses are for their friends!"

My younger mom self would have also thought that Max would look weird. This mom approached a bus monitor, asked if there was room for Max, asked if she'd give Max a hand getting off the bus at the party venue, settled Max into a seat and left, glad for the joy ride.

At the party, dozens of tweens and teens danced, played video games and ping-pong, and took turns taking silly pics at the photo booth. Max wandered around the dance floor alone, mesmerized by the videos on screen.

My younger mom self would have felt sad for him and stuck by his side. This mom let him do his thing. He was happy. I was happy.

Max is his own awesome self. I am longer that mom.

Friday, May 19, 2017

The Special Needs Blogger Link-up: Keep 'em coming!


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: Raising children with special needs: There's no day off from worrying

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

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

Thursday, May 18, 2017

Group therapy: How much do you tell friends about your baby with special needs?


"How much do I share about my child's condition with others?" a reader writes. "He's a 10-month-old who was born at 32 weeks with a bilateral brain bleed of the most severe grade. I'm still figuring this all out. This weekend, we are getting together with several couple friends and their babies, who haven't seen our son since he was a few months old and do not yet know about his condition. It's hard to ignore the developmental delays, my son does not have good head control and cannot sit up. But like any mother, I want to protect my child, and there are many unknowns when it comes to his future. I don't want people's expectations, based on their ideas of disability, to put limits on him. I also don't want anyone to feel sorry for us. So, what should I say in situations like this?"

Please share your thoughts and advice with this reader below.

Got a question you'd like feedback on? Email lovethatmax@gmail.com

Wednesday, May 17, 2017

Students build a toy car for kids with disabilities, and open up possibilities


A little girl with disabilities has been having the joy ride of her life since Syracuse University engineering students designed a toy car for preschoolers like her. It's a story about giving children with special needs independence and helping them fit in with their peers. It's a story that shows just how much technology can enable our children. And above all, it's a story about seeing the potential—something our children need in droves.

Luna, 5, has neurodevelopmental delays that affect speech and mobility. She typically gets around in an adaptive stroller that's pushed by someone else. Luna attends the Jowonio School, which has an inclusive educational program where children of all abilities learn in the same classrooms. It's hard for the school to get a loaner power wheelchair for the young kids, as there aren't many available in central New York. And so, the school partnered with biomedical engineering students at Syracuse U. to consider what might be possible.

The three seniors participating in the project—Katie Cooper, Brendan Butcher and Zach Reers—decided to build a device that was like a wheelchair, but also transitional so a child could also play with friends. They came up with a mini car that has a joy stick for steering (like a motorized wheelchair); kids can also drive via an adjustable head array. There's also an iPad mount so the driver can use a speech app for communication, and room for a buddy. The students called it the "Otto-Mobile" after Otto, the school's mascot.

Luna can get herself around in the car, encouraging independence. Being at the other kids' eye level in the car makes for better social participation, notes her occupational therapist. And of course, the Otto-Mobile is cool. Small wonder it won first place in Syracuse's Bioengineering Capstone Competition. The students donated it to Luna's school.

Check out the video. I'll just warn you now, it's not safe for work because you will likely dissolve into a puddle of tears when you see Luna coming down the hallway in that tricked out little car. She owns it. 


The name of Luna's school, Jowonio, comes from a word in the Onondaga nation language that means to set free. That is exactly what thinking like this and technology can do for our children, enabling them in ways big and small. First, though, people need to see the potential of children with disabilities, believe that they deserve to experience what the world has to offer, and understand that the best assistance of all comes from helping people help themselves.

Image: Screengrab/YouTube

Tuesday, May 16, 2017

Clothes shopping for your child with disabilities just got easier: thanks, Zappos


This post is sponsored by Zappos Adaptive; opinions and excitement are my own.

Mom fact of life: I spend more time clothes shopping for my children than I do for me, typically online at about 11:30 p.m. Buying stuff for Max can be particularly challenging. Because his fingers are stiff from the cerebral palsy, he needs pants that he can easily pull up and down (even the elastic waistband on sweatpants can be too tight for him to manipulate) and shoes that he can fasten himself.

You can imagine how gleeful I was to hear that Zappos just debuted a collection devoted to adaptive clothing for kids, teens, men and women: Zappos Adaptive: Functional and Fashionable Products to Make Life Easier. As in, easier for your child and you.

The curated selection of tops, pants, dresses, shorts and underwear includes ones that are reversible and have tear-away tags (they come off with barely a tug). The fabrics are really soft, the pants have elastic waistbands and there are no buttons. The shoes are easy-access and slip on or use bungees and cords; there are ones that can be worn with orthotics, too. Basically, there are options for children and adults with cerebral palsy, autism, Down syndrome, sensory issues and any condition that can impair fine-motor skills or mobility.

Columbia Kids Silver Ridge Pull-On Pants in British Tan and 4Ward Clothing Four-Way Reversible Long Sleeve Jersey Top in Black/Sky. The name 4Ward, Zappos' own line, represents enabling people with challenges to move forward, being fashion forward and clothes that are four-way reversible—front, back, inside and out.

The waistband is on the loose side, so pants are easier to handle.

You can browse by need in categories such as "Sensory Friendly" and "Orthotic Friendly (Includes AFO)." Brands include Columbia, Adidas, Under Armour and Vans, along with 4Ward and Independence Day, an exclusive Zappos adaptive clothing line created by a former CNN news anchor who's mom to a child with autism.

Mr. Handsome in an Adidas Kids UFB Reversible Jersey in Gray/Solar Yellow and 4Ward Clothing Four-Way Reversible Pants in Navy/Oatmeal.

The waistband on these pants is especially thick and stretchy. 

The idea for the collection started with a call from a concerned grandmother. A Zappos staffer in customer service listened to a granny who needed to exchange her grandson's shoes. She noted that he had autism, and trouble tying laces. As he got older, finding shoes was becoming a challenge. Bingo!


It is all sorts of awesome that a major mainstream website is offering clothing and shoe options for people with disabilities. The clothes look stylish and Max, who increasingly cares about what he wears, thinks they are cool. He can now browse the same site where his sister and I shop. This is just the start; selections will expand, and you can share thoughts about clothing you'd like to see by clicking "Give feedback." I'm hoping for tops with magnetic button closures.

It is also amazing, of course, to see your child with special needs enabled.

Let's talk about those brilliant sneakers. Sabrina has been a fan of Converse for years. Max hasn't been into them, a good thing because getting standards high-tops on would be difficult since his feet are pretty tight.

As Max and I were browsing the collection he spotted a pair of Converse Kids Chuck Taylor All Star Easy Slip in red (fireman red, he noted) and fell in love. They were just what we needed; the laces are elasticized, and two flaps at the back close with hook-and-loop fasteners.



Max couldn't wait to wear the sneakers. I helped slip his feet into them. Then he closed them on his own, and that made both of us really happy.

Monday, May 15, 2017

Raising children with special needs: there's no day off from worrying


Mother's Day brought some usual treats, along with unexpected ones. As I'd guessed, I could only sleep in till 8:00 a.m. but that still felt great. Dave got my favorite breakfast: bagels, cream cheese, lox and iced coffee.

Max gave me a mason jar terrarium he made at school. 

Sabrina gave me a sweet card, then a little later asked if I wanted the chocolate bar.

Dave snapped our annual porch steps pic 

Dave and the gang also gave me a big balloon and a Hallmark card with a "Mom Off Duty" button. I joked that I'd wear it next day, too. Several other moms I know got the same card and button. "Is it working for you?" I texted one friend. "Well, just opened the card after making lunch for everyone," she responded. 

I enjoyed a pretty chill day, complete with the usual jolts of worry. They are a standard part of my life; I was just more aware of them yesterday because I wasn't operating on my usual high speed. Like power surges, they flare up then recede. 

I watched Max grasp the rail of our front steps and struggle to walk up, and I worried that as he's getting bigger his weight is making it harder for him to move around.

I watched Max repeatedly try to pick up a set of car keys to hand to Dave, and I wondered if I will find a new OT to replace the one who's leaving us.

I listened to Max grappling to understand how to use his school word of the week in a sentence, and I worried about his developing cognition.

I watched Dave helping Max eat during our dinner out, and I worried about his evolving independence.

I sat in the quiet of our living room after everyone was asleep, scanning the happy photos on Facebook and the wistful messages from friends who have lost their moms. And I went to that scary place and wondered what Max will do when Dave and I are gone. 

And then, I did the only thing that could console me: I went upstairs to Max's room, cracked open his door, crept over to his bed and kissed and kissed his cheek as he lay sleeping. 

Mothers are never off duty, are we? It's just part of the gig. 

Good thing we have the best benefits of all.

Friday, May 12, 2017

The Special Needs Blogger Weekend Link-up: Put 'em up!


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: All we want for Mother's Day is SLEEP

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

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

Thursday, May 11, 2017

All we want for Mother's Day is SLEEP


Chocolate, flowers, handmade cards, spa gift cards, cuddles, bullion: They're all welcome on Mother's Day. Based on my unofficial survey, many of us would also appreciate a day without chores, planning, meal prep or whining; a foot rub; a cleaned-out minivan; actually sitting down; and impeachment (sorry, can't help you there).

But there's one thing moms want more than anything else, and that is: sleep. Here are some handy hints to share with loved ones so we can all enjoy the gift we want most on Mother's Day.

Just how badly do we need sleep?

Many of us haven't had a good night's sleep in [insert oldest child's age] years. We survive by coffee, concealer and cat videos alone. Some of us don't mind stomach bugs or colds if it means we get to stay in bed. Some of us don't even mind emergency gallbladder surgery, since it's a valid excuse to catch some shuteye.

And so, on Mother's Day, we'd like to sleep in. 

Although at this point we can barely sleep past 8:05 a.m. because we've forgotten how, we would still like the possibility of extended, uninterrupted sleep.

What is this "uninterrupted sleep" you speak of? 

It means that as we are lying in bed actually asleep, we are not suddenly awakened by screeching; loud noises that sound as if something or someone have broken; or anyone standing by our bed, poking our ribs and asking "Mommmmmy, where are the scissors?"

Even if we've lost the talent for sleeping late...

...we will settle for lying in bed awake and not actually having to get up.

A word about breakfast in bed

If you make us Nutella pancakes but leave the kitchen a mess, that cancels out breakfast in bed.

A nap would be lovely, too.

Some people daydream. Mothers nap-dream: throughout the day, we think longingly of naps and how we'd pay good money for one. When we see an inviting horizontal surface—the floor of the playroom where our tots are scampering around, the bed on display in the department store, the carpet beneath our desks at work—we think, "Maybe we can lie down for just a few minutes!" And then, we just keep going. So yes, please: A NAP.

You know what's even better than a nap?

Napping in an empty house. We love you, family, but if you'd just abandon us for a few hours on Mother's Day afternoon, we'd be so excited.

That is all. Yawn.

Love,

Mom

Also check out:

I am the person who notices we are running out of toilet paper, and I rock: A Mother's Day tribute to hard-working moms everywhere

Wednesday, May 10, 2017

The discrimination parents with disabilities have to deal with


Having a newborn in distress was the most traumatic thing I've ever been through in my life. I can't imagine how much more horrible I would have felt if hospital staffers didn't have my back—exactly what happened to Nikki Villavicencio after she gave birth. Her daughter, Alley, was coughing up blood and her stomach was swelling. Nikki, who has arthrogyposis (a condition that restricts joint movement) and her husband, Darrell Paulsen, who has cerebral palsy, met resistance at the children's hospital where their daughter was transported.

As told in a new Cosmopolitan article by Kathryn Joyce, staffers reportedly griped about their wheelchairs in the exam room, informed Nikki they wouldn't help her breastfeed and suggested that Darrell wait down the hall. Alley, now 5 years old, would turn out to be fine. But for Nikki and Darrell, this was just another uphill battle they would face in their lives as disabled parents. And now, they are trying to pave the way for other parents with disabilities.

These stories make headlines from time to time. You may recall Kaney O'Neill, a woman with quadriplegia whose ex sued for custody of their child (she won), or that time when Canadian authorities threatened to take away the baby of a couple who both have cerebral palsy (the authorities backed off).

The piece brings to light other instances of bias against parents with disability, including the fact that it's not uncommon for Child Protective Services to get involved and the general sentiment that they are not able to parent. One 40-year-old mother with cerebral palsy recalls a hospital staffer asking her, "How are you going to care for a baby?" The answer, of course, is with love and ingenuity. Mothers with disabilities find a way. Nikki uses her feet to handle utensils, and smooths Alley's hair holding the brush in her teeth.

Yes, these parents have challenges; theirs are just more visible than others. Yes, raising children involves a fair amount of physical labor—but there's no one "right" way of doing things. Good parents come in all shapes and forms. Nikki and Darrell seem like good people; their daughter is lucky to have them.

The couple, who live in Minnesota, proposed legislation aimed at protecting parents like them. Called the Parenting with Disabilities bill, it aims to help parents in the state apply for adaptive equipment and allowing their personal care assistants to pitch in with small parenting tasks. It passed through two House committees in February, and moved on to ones in the Senate. Hopefully, there will soon be a pilot program in place—and other states will follow suit.

As the parent of a child with cerebral palsy, I am all too aware of the no-can-do discrimination he faces. People see the disability, not ability. "As a person with disability, and as a woman, I felt the world didn't see me as a caretaker," Nikki says, but rather, "someone who needs to be taken care of." Hopefully, her and Darrell's efforts will keep getting attention—and enable people to move past their dated ideas about disability. Parents have enough to deal with. Assuming incompetency because of a disability is one hurdle they shouldn't have to overcome.

Image: Caroline Yang/Cosmopolitan.com

Tuesday, May 9, 2017

The amazing thing our children do for us (with gratuitous cute video)


At a First Communion luncheon we attended this weekend, I watched my children watching a magician perform. Max kept giggling. Ben was curious. Sabrina was interested, despite her jaded tween ways. I kept reaching for my phone, but when I saw how engaged they were I forced myself to put it down and watch.

Children have a way of making you live in the present. True, this is often because they need your attention NOW NOW NOW and/or they are whining, but it's also because you get sucked into their moments of fascination and joy. Suddenly, you're not thinking about the leak in the roof, the expensive treatment your child with disabilities needs or work deadlines. You are right there with your children, laughing at some guy's corny jokes and marveling over how he made a handkerchief disappear.

Max yanks me into the moment a lot lately because he is full of questions. This from the boy who never used to ask questions. What are we doing on Saturday? Is that dress new? Why did the birds make a nest on our porch? Did I do what Ben's doing when I was a baby? What time am I leaving for Las Vegas? (He is bent on visiting there for his birthday with Dave, mainly because he saw a video of some fire trucks there; this has nothing to do with his gambling problem.)

Sabrina draws me into the moment anytime she emerges from her room and wants to talk with me about something that does not involve shopping. #tween

The baby regularly draws me into the present. He is discovering stuff all the time now, and it is wondrous to see. He can climb onto the sofa! He can make wah-wah-wah sounds if he continuously claps his hand to his mouth! He has a belly button! Wow, Mommy and Daddy do, too! Look—a train! Look—the sky! Look—nostrils! This weekend, he realized that he could moonwalk! Or was he maybe just trying to walk backwards? 

Watching him, Sabrina and I were fascinated, in awe and so in love. 

Monday, May 8, 2017

Finding a school for your child with disabilities: What you can learn from our journey


We've decided on the high school Max will attend. It's been quite the process, filled with frustration, disappointment and ultimately, acceptance—much like the journey I've been on raising Max. I'm sharing what happened in a two-part series. Although processes and choices may vary by state, hopefully some of the lessons I learned along the way will help you when the time comes to choosing a school for your child with special needs, be it elementary or high school.

Max has always attended an out-of-district elementary school since our local one was not a good fit. It's a private school for students with disabilities, and he's thrived in it. I wanted to look at the same for high school, as well as integrated programs in public high schools. I thought it would be beneficial for him to be in a school that had students with a range of abilities, to better prepare him for the real world and further his social skills. Max is an extremely social boy, but he's had limited interactions with so-called typical peers.

I've had inclusion on the brain for years. I saw photojournalist Dan Habib's amazing 2007 documentary, Including Samuel, about his family's efforts to include Samuel—their son with cerebral palsy—in school and all aspects of life. I'd held onto a 2004 issue of The New York Times Magazine because of an article, The Lessons of Class 506, about a kindergartner with CP. His father, Richard Ellenson, an advertising executive and visionary, had helped reconfigure a New York City classroom to accommodate Thomas and his wheelchair. (Richard is currently CEO of the Cerebral Palsy Foundation, for whom I write.)

One uphill battle I faced: Some of Max's friends from his current school had gone on to a high school for students with disabilities, and he already had his heart set on that one. It didn't help that at an ice-skating program a couple of months ago, he bumped into Caleb, a former student from school that he was totally obsessed with; Caleb also attends that school. Max grudgingly agreed to check out others.

I started the search last fall. Our district case manager thought that was early and suggested we wait till after winter break to send records and schedule intakes, where the director talks about the school and services and staff members meet with the student to determine if the school can meet his needs. Trust me, you can't start too soon, especially if you're a working parent since you have to carve out time for the visits. We were lucky to have choices, although as it turns out, in the end our choice was pretty much made for us.

Let me back up here: Before you do anything, get an overview of the school search process from your case manager. Ours didn't do that, and I never thought to ask, so I got bits and pieces of information along the way that would have been helpful to collectively know from the get-go.

I knew of several schools to check out. Our case manager, who is lovely and experienced, surprisingly didn't have many suggestions to offer. Sometimes, when I heard of a school that she didn't know of, I'd ask her to ask her colleagues if they had any scoop. Max's school had a couple of suggestions and on occasion I asked for feedback on ones but again, I did not get much direction from them. As the parent, I had to take the lead on figuring out which schools to visit.

A couple of times later on in the process, I randomly found out about potential schools—one from an administrator at Max's school who mentioned it off-handedly in March when I said I was still looking, and one from a mom (a friend of a friend) I happened to sit next to at a charity event. You want to know that you have checked out all possibilities, which is why it's good to know early on who the contenders are.

That leads to me another key to-do: When you start the school search, ask everyone and anyone for suggestions. Hit up your child's teachers, the principal, your child's therapists, parents of children who have already graduated from your child's school, your special needs parent friends in real life and on Facebook—and ask them to ask their friends. You want as full of a list as possible.

After I said I wanted to check out a given school for Max, our case manager would send Max's records there. Then the school would review them and decide whether or not they wanted to meet Max. This was a total shocker to me: Out-of-district schools have the right to turn away your child before even meeting him (more on that in the next part of this series). But is that legal? Yes, it is. If a school decides they cannot accommodate a student's educational needs (I'm not talking about physical accessibility), they can reject your child. Like I said, shocker.

Before you tour any schools, compile a list of questions—in your phone or printed out—to ask. These were my basics:

• What is the school's general philosophy about students?
• What is the school's philosophy about academic achievement?
• What is the total school population? What is the typical class size, the student-teacher ratio and the maximum class size allowed? How many assistants per class?
• How do they group students in the classes—by age? By academic development? Both?
• Do the classes have smart boards? What sort of computer technology do students use in class?
• Is there a digital media center? A library?
• How long are therapy sessions? Where are they typically held?
• What is the homework policy?
• How does the school inform parents about what their child is learning in classroom?
• How do teachers and parents regularly communicate?
• What is the school's approach to augmentative communication?
• What percent of students use AAC devices? What are the typical apps/programs used?
• What are the key life skills the school teaches and how?
• What sports and extra-curricular activities are offered?
• What sort of set-ups exist in the school for teaching life skills?
• What sort of class trips do students take?
• What sort of special student events do they have during the year?
• Is there Extended School Year programming? Winter break and spring break programming?
• What sort of after-school programs and events are offered?
• Have students gone on to college and if so, which ones?
• What sort of job training program is offered?
• Are there job coaches? How many?
• What percentage of students are placed in jobs?
• What sort of jobs have students been placed in? Are there ongoing work arrangements with local companies and businesses and if so, which ones?
• What sort of job arrangements has the school made outside the norm? (Spoken as the mom of a wannabe firefighter.)

Obviously, you'll want to tailor the list of questions according to your child's needs. Because Max doesn't have behavioral issues, I wanted to make sure that he wouldn't be in a class with students who had extensive ones and I brought that up. I'd also heard a horror story from a parent about a school revoking her child's physical therapy session without informing her, despite the IEP, and so I made sure to query that school about guaranteeing PT.

As always, trusting my gut helped. At the first school we visited, as teachers and therapists met with Max, the social worker giving me a tour mentioned that the school had a no-homework policy. Surprised, I asked why. She told me that students are often tired at the end of the day and that parents found it stressful. Of course, that's true. Max is often wiped out at night and sometimes resists doing homework. After a long day of work, it's not exactly a pleasure for me, either. But it's very necessary; Max, like many students with special needs, benefits from repetition and review of information, along with plenty of practice.

I felt the school had an institutional feel. There was no student art or projects displayed on the walls, for one. I was impressed with the life skills components, including a woodworking shop and the fact that students sold what they made at craft fairs. Another local mom whose opinion I trusted had chosen the school for her child, which had seemed like a good sign. But still: It didn't feel like the right place for Max, and it wasn't close to our home. Bussing is provided, although picking him up from after-school programming would have been a challenge.

That same school had a sheltered workshop for adults with disabilities, housed in a separate building from the school with dozens of work stations in a large open room. The jobs involved assembling and packing up products. Sheltered workshops are an old-fashioned approach to work for people with intellectual disability, and many are being phased out because they don't always provide meaningful employment and they fail to integrate people with ID into the community. Proponents say they allow people with disability to work in a setting that's comfortable to them.

The kind, elderly woman who had been running the workshop for decades showed Max and me around. A lot of adults said hello to Max, and a few commented on how cute he was. The workers were paid according to the rate at which they worked, which could fall below minimum wage—typical of sheltered workshops, and depressing. One job involved stuffing trinkets into little plastic balls, the kind you win from machines in arcades. Another consisted of packing small boxes into large crates.

I fought back tears. This was not the future I envisioned for Max.

One difficult part of the school search process was coming to terms with my expectations about Max. Fourteen years into raising him, I still project my hopes and dreams onto him. Although it is not possible to know, at this point, how he will function as an adult, I had to come to terms with certain realities. But I could not, would not, picture him in a sheltered workshop. Life will have more to offer my boy.

In the end, the principal told our case manager they felt Max was too high-functioning to attend the school. She said they could handle it academically, but that it wouldn't be good for friendships. Another affirmation: A school that's great for one student isn't guaranteed to fit the needs of your child.

In the fall and early winter, I also visited two schools for students with cerebral palsy, one with Max and one without. I was impressed with the principals, how both schools were run and the therapy programs. Typically, there is less physical, occupational and speech therapy in high school than in elementary school, no matter what kind of IEP your child may have. The CP schools, however, offered extensive therapy (one even had an indoor pool for aquatic therapy); cool activities (a student TV station!); and important services found at Max's current school, including clinics for orthotic fittings and scoliosis assessments. However, I wasn't convinced Max would be sufficiently academically challenged or socially engaged at the schools.

Our case manager had told me early on that basically we'd have to choose between a school with more of a therapy focus and a school with more of an academic focus. I soon discovered how true this was. Still, I was glad to visit as many as I could. It's important to check out a variety of schools—it helps you and your child more firmly decide what you do and don't want.

The hardest, and most heartbreaking, part of our search was yet to come. (Part 2 will be posted next week.)

Friday, May 5, 2017

The Special Needs Blogger Link-up: It's here for you


What to do if you're new here

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

Like this: The feels you feel when your baby is born sick

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

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

Thursday, May 4, 2017

Stop the special needs mom shaming


Recently, when we visited a dude ranch, I was chatting with another mom when I heard Max's distinctive screech from across the lobby. I excused myself and arrived to find him upset. Nothing had happened; he was just overly tired. He'd been doing a lot of activities and he tends to poop out sooner than other teens. Because of the cerebral palsy, his muscles work extra hard.

"AAAAAAAAARGH!" said he, and like the beasts the character Max confronts in Where The Wild Things Are, my Max roared a terrible roar and gnashed his terrible teeth.

There were a lot of people around. Some kids stopped and stared, along with their parents. "Man, she needs to keep that boy quiet!" said a nearby mom, and I turned to her and gnashed my terrible teeth only I think she missed it.

You know how it goes.

Your child is having a meltdown: in a restaurant, at the supermarket, in Target, at a park, in whatever public place. Even as you channel all of your energy into calming him, you notice the looks directed at him...and at you.

What is wrong with him? the stares say. And what is wrong with you?

Dealing with a child with special needs losing it in public can be a double whammy. Not only do some people wrongly assume your child is a brat, they may figure that you are a crappy mom to boot. It's something parents of children with sensory issues, autism and other special needs regularly have to contend with.

Mom-shaming is pretty rampant, reveal findings of a survey by Beech-Nut, the sponsors of this post. Nearly 80% of 1,000 millennial moms polled have experienced some form of shaming, and 68% agree that the problem is more of an issue now than it was five years ago. This is why the company's launched a campaign, Turn The Labels Around (hashtag #ShowMomsLove). It calls on moms to stop shaming and to come together to support each other. As Beech-Nut Veep Andy Dahlen puts it, "The only label that matters is 'mom.'"

As a parent of three, I've experienced various forms of mom-shaming over the years: Disdain from another mom when I showed up late from work to a school event, tsk-tsking when I've discreetly nursed in public and, once, disbelief from a mom who asked how I could spend a weekend away from my kids when I mentioned that I occasionally attend blogger conferences. I'm lucky that I live in an area where most people are open-minded. Shaming was at its strongest when Max was younger and had major sensory issues. Going to new places—restaurants, museums, kid events, amusement parks—freaked him out, and he'd regularly have the mother of all meltdowns.

Shaming moms of children with special needs delivers an extra helping of hurt. That's because we are typically doing our best (well, most days!) to help our children navigate a world that can seem scary, and our nerves are already frayed. Getting the evil eye when our child is acting out because of sensory or cognitive issues is rubbing salt into an open wound.

Sadly, according to the survey 78% of moms have experienced shaming or judging by their own mothers or other family members. I've had the opposite experience with my mom. While she's been known to nag me for leaving the house without lipstick, she has been wholly supportive of my motherhood since Max came along 14 years ago. I can't say the same about all my family members, including one who used to chide Max at birthday parties when he wanted to help open presents.

Mother's Day is coming up, that wondrous occasion of breakfast in bed, homemade cards, flowers and goodwill toward moms everywhere. This survey is an important reminder that moms need to be kind to each other year-round. Judge less. Empathize more.

At times, I've called people on the shaming. When we were at a children's museum a couple of years ago and a mother kept glaring at a hysterical Max, I said, point blank, "He has special needs and he's overwhelmed right now. Thanks for your patience." She seemed taken aback that I'd spoken up and blurted "Sorry!" I hope it gave her pause for future stare-downs. You never do know why a child is losing it.

You also never know how much a kind glance or a few words can mean to a mom. Several years ago, we were in a restaurant and desperate to subdue Max, who was wailing loudly. Finally, we distracted him with a video. I felt drained and sad. A mom at another table caught my eye. "You OK?" she mouthed. And that was exactly the comfort I needed.


This post is sponsored by Beech-Nut, but all opinions are my own. 

Wednesday, May 3, 2017

The feels you feel when your baby is born sick


Yesterday, I watched Jimmy Kimmel's emotional monologue about his newborn son, William. He seemed normal after birth, just as Max had. But three hours later, a nurse detected a heart murmur and noticed William was a little purple. Testing revealed he had heart defects. He successfully underwent surgery—"the longest three hours of my life," said Kimmel—and will require another open-heart surgery a few months down the road, along with a procedure as a teen to replace a heart valve.

I cried for Jimmy Kimmel and his baby, although there was a happy ending. They are now part of a club of parents nobody ever wants to belong to: parents whose babies were sick at birth. I cried for myself and Max, too. Fourteen years after Max came into this world, there is still a raw spot in my heart and soul about that time. It flares up when I read about other newborns going through traumas.

Kimmel and his wife were blindsided by what happened, understandably so. If you/your partner have a healthy pregnancy, with no known risk factors, you may have some anxiety about the birth. But still: You do not think that anything really bad could occur. Not heart disease. Not premature birth. Not seizures and a stroke, as Max had.

And so, first, there is the shock of something gone wrong that nobody saw coming. This is not what you're told to expect when you were expecting. This is not what you planned for. This was supposed to be one of the most joyful times in your lives, except you're living a nightmare.

Paired with that shock is the deepest anxiety you have likely ever experienced. Because this tiny creature of yours—the one you only just got, the one you'd been waiting and waiting for—is imperiled, and you are helpless to come to his rescue. You may google like mad looking for answers, query all the doctors you come across in the NICU, speak with any and every baby doctor you have ever known. But still, your beautiful baby is lying unconscious in a glass incubator with tubes and wires coming out of him and there is nothing you can do.

You are sick with worry. You are overwhelmed and bewildered. It all feels surreal, like you are in some bad made-for-TV movie.

As sorry as you feel for yourself, you may feel even worse for your partner. Dave is not one to be overly emotional, and in the course of several days I saw him go from one extreme to the other.  I can still vividly recall his face in the operating room (I had a C-section) as he cradled Max in his arms and stared at him wondrously. He was instantly in love. I can also vividly recall Dave's face crumpling when the pediatric neurologist told us, as we sat in a conference room, that Max had a stroke. I felt worse for Dave than I did for myself. We both wailed that night in the hospital room.

As you are reeling from all of this, you have to absorb a whole lot of medical information being thrown your way (and then, you end up googling more). You may have to learn procedures, like the couple with a baby in the incubator next to Max's who had to occasionally tap his heart to keep it pumping. You might have to make a major decision about surgery, as The Kimmels did. You are no medical expert but literally overnight, you become one.

Somehow, you need to keep your focus during the hardest conversations. After the neurologist told us about Max's stroke, he gave a brief lesson on the parts of the brain that were affected so we could better understand the functions that were at risk. A resident later showed us the MRI images of Max's skull, and the involved areas. The white parts—on both sides of his brain, because he'd had a bilateral stroke—were the damage. There, in black and white, lay the destruction of my baby and my own destroyed dreams. The resident spoke about brain plasticity and the ability for regrowth to occur around the damage. Still, nobody could explain why the stroke had happened, or what the future held for Max.

Perhaps you also fret about whether something you (or your partner) did caused a problem. Did you not eat the appropriate foods? Was it the few times (well, more than a few times) you didn't remember to take the prenatal vitamins? Could it be that day you slipped on the stairs and sat down hard on your butt?

You may also worry about letting your family and friends know that something bad has happened. My mother, father and sister were out-of-their-heads excited about Max's arrival. I was so thrilled to give my parents a grandchild. It made me even sadder to think of how devastated they'd be. My dad was the kind of person who did not expect life to do right by him. And now, his first grandchild had a stroke, of all things. The conversations were excruciating. My father looked so somber when he came to the hospital. I hadn't gone into detail about the implications of the stroke to try and spare my parents some heartache, but Dad was a really smart, well-read man and he knew the damage a stroke could cause.

You may feel so alone. Nothing anyone said was a consolation to me. How could anyone truly understand the hell we were going through? Other friends had recently had babies who were totally healthy. Why did this happen to us?

On top of everything, you may be stressed about paying for the hospital bills. We were fortunate to have had good insurance, so our out-of-pocket expenses were not so bad. (The flawed-but-fixable Affordable Care Act has two key mandates that are crucial to parents of sick children or any ill individuals: Insurance companies can't deny coverage for pre-existing conditions or cap the amount of coverage in a single year.)

Meanwhile, you are a sleep-deprived zombie going through the motions of showering, getting dressed and eating, never mind that you might be healing from a C-section. Sleep brings little respite or relief. If your baby is in the NICU for an extended stay, you may lie awake wondering about him and feeling awful that he is there in that big room without you. The day we came home that second week of Max's NICU stay, I stood in his empty room and wallowed in grief. After that, I shut the door so I wouldn't keep torturing myself.

When I think about what happened to Max, as I did after I'd watched Kimmel's monologue, it comes back to me with intensity. It does not feel like fourteen years ago. I can vividly picture how Max looked in the incubator, the hallways of the NICU, the somber face of that pediatric neurologist as he talked to us on that fateful day.

Like Jimmy Kimmel, though, we were lucky: We got a happy ending.


Tuesday, May 2, 2017

This kid has important calls to make


Ben grabbed Sabrina's phone yesterday afternoon and walked around talking into it, a milestone not in any of the child development books. We all laughed, Max the hardest of us all. He is charmed by Ben's progress...and maybe a little competitive.

"Did I do that?" he asked.

"No," I told him, honestly. Max didn't do much pretend play at that age, and didn't yet have words.

"Oh," he said, pondering that.

Max regularly wants to know if he did the stuff Ben is doing. Sometimes the answer is no. Sometimes the answer is "Yes, you did that when you were older." I'm always straight up about it. But I'll point out stuff that he did do.

"Max, you were the first person in our family to use an iPad!" I reminded him.

"YEAH!" he said. He's really proud of how well he knows his way around an iPad.

And then, Ben had something earth-shattering to say in his pretend phone conversation and once again, we were all laughing.

Monday, May 1, 2017

Boys won't be boys: Forget you, stereotypes


Ben wheeled his ride-on toy into the kitchen the other day, and we all laughed as he raised his feet up and coasted. He's getting the hang of it.

"Boys will be boys," they say, implying that most boys are the rambunctious, daredevil kind. Not Ben. He was timid about trying the play gym in our basement. On the playground, he likes me to hold his hands as he climbs or wants me to go up with him. Typically, we go down the slide together. He likes toy trucks; he also likes this Minnie Mouse doll we keep in his playpen.

The bottom of the main staircase of our house doesn't have a baby gate; we couldn't find one that would fit between the spindles and the wall. It's been fine, as unlike other kids Ben doesn't attempt to scramble up the stairs the second you take your eyes off him. Yes, of course, toddlers change. But Ben's pretty sane, which Dave and I deeply appreciate. (He didn't get the third-child memo for the first few months of his life, but he's come around.)

It's Max who first showed me how ridiculous it is to think that boys will be boys. As he's taught me,
great boys come in all varieties.

When Max was little, few would have remarked that he was just a boy being a boy because he didn't fit the physical profile. It took a lot for Max to learn to sit up on his own, pull to stand, commando crawl, crawl on all fours and then walk. When he was a couple years old, I'd hold him on my lap at birthday parties, feed him cake and sadly watch the other tots running around. Stereotypes can be painful when you have a child with special needs.

Max defined that whole boys-will-be-boys thing on his terms. He zoomed around our house on his seat with wheels. He roamed up and down the street using a walker with wheels, the ones the other kids in the neighborhood wanted to try.

As Max matured, so did I. I realized there is a wide spectrum of boyhood that encompasses many abilities and interests. Max wasn't deficient; he was as boy as any of 'em.

Thanks to Max, I have no expectations of how Ben should behave. Normal? Whatever.

Ben will be Ben.

Max will be Max.

Your son will be your son.

It's all good.



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