Friday, December 30, 2016

The Special Needs Blogger Weekend Link-up: Happy New Year edition


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 Love That Max year in review

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, December 28, 2016

The Love That Max year in review


In January, Max became the boss of usI had to answer a hard question about his development and he drank the whole pina colada.


In February, Max modeled an outfit from Tommy Hilfiger's new line of clothing for kids with special needs and I discovered 9 hacks for getting insurance companies to pay for your child's therapies.


In March, I discovered a fun way to get Max to eat, he did an amazing presentation at his school and he picked up a skill not in any development books: teasing his mom.


In April, Max had his bar mitzvahI refused to help him at the supermarket for good reason; and a bunch of parents and advocates took a stand against a comedian who mocked people with disability.


In May, Max aced his first Special Olympics and in honor of Mother's Day I gave myself props for always noticing we are running out of toilet paper.


In June, I took a stand against the entire month of June, wished that people could learn this from a viral video about a girl with disability and shared a great guest post about having a clingy child by Amy Silverman, author of My Heart Can't Even Believe It, and another post by Tony Bombacino, a dad who created a food company for his tube-fed son.


In July, Max learned to tap dance, and I shared 20 wishes parents of children with special needs often have.


In August, I pondered what we could do in the aftermath of the Japan massacre of people with disability, asked you to share your children's latest milestones so we could all celebrate them and debuted Bad Moms: Special needs parents edition.


In September, I celebrated a child with Down syndrome on the cover of Parents magazine, wished this viral video hadn't made people cry, shared the best therapies for children with cerebral palsy and brain injury from a top doctor and tried not to worry about Max's future (but didn't succeed).


In October, I decided that nobody has to give my child pity donuts, thanked God that we had found a house of worship that welcomes children with special needs, forgave Max for that time he tried to get me arrested and shared extreme baby dancing cuteness from Ben plus urged people to vote for him for president.


In November, I started looking at high schools, felt grateful that I could enjoy the baby's development without comparing it to Max's, explained why why there's no such thing as "age-appropriate" for a child with special needs and somehow managed to put together a holiday gift and toy guide for children with special needs.


In December, I wished that everyone saw Max like his baby brother does, felt awed that Max had walked across an entire bridge and mused on how sometimes it just takes one open-minded person to change our children's world.

Here's to a new year filled with happiness, good health, milestones, inchstones, good insurance karma, a whole lot of fun and people who see our children for the awesome children they are.  xoxo

Monday, December 26, 2016

How winter break feels for parents, in GIFs

Your child, on day one of break. Right after breakfast.

You, on day one of break. Right after breakfast. 

When your child finishes the art project you figured would take an hour—in approximately four minutes.

When you leave your child to his own devices and you feel guilty because he played with the same toy for approximately eleventy billion hours.

When you let your children watch TV for approximately eleventy billion hours.

When you give in and let your kids have mac 'n cheese/cookies/spaghetti/Cheetos/whatever for breakfast because after a few days of winter break, you are weak. So weak. 

When you pick your partner's brain about activities and he can't come up with anything better than "Go to the mall!" either.

When the playdate gets cancelled because the other kid is sick. 

When you tell yourself that at least the iPad has educational games. (No matter that your child is not playing any of them.)

When you start saying things like "Go have a dance contest with yourself!" out of desperation.''

When you fantasize about sitting in peace for just five minutes

When your child is about six days overdue for a nap and won't admit it.

When you feel like you're living through the longest days in the history of the world.

When your children finally go back to school.

Friday, December 23, 2016

The Special Needs Blogger Weekend Link-up: Happy Post-mas!


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 it takes is one open-minded person to change our children's world

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, December 22, 2016

When your child with special needs starts to advocate for himself


"You're not being nice to me," Max says. I am sitting on the couch, typing on my computer. I've told him that I need quiet time to finish doing work, and that he should go into another room.

I've said it in a firm tone of voice, with a bit of an irritated edge because I have said it to him several times over the course of the last 10 minutes and I need to turn in something before the end of the day.

"Max, it's not that I am not being nice. I just need to finish this up and I can't do that if you keep coming in and talking about Disney World," I say. Max has been making plans for a spring trip to Disney. For better and for worse, he doesn't yet know how to pick up the phone and book airplane tickets. This means that every day, he asks when we're going to get the tickets.

"I know!" he informs me. He says that a lot lately, too. Because: teenage know-it-all 'tude. And because Max is growing more confident.

For sure, Max needs to understand that a parent telling you what to do isn't crossing the line into mean territory. Nor does a parent asking you to finish your dinner, go to sleep or to pick your socks up off the floor qualify as being mean—times when he's also informed me, "You're not being nice to me!"

But I'll take it.

For some time now, I've had self-advocacy on the brain, mostly starting when I read an AbilityPath report about life after high school. As a special needs parent, you spend a good part of your life nudging and pushing and bull-dozing and generally advocating for the sake of your child, all the while defending and protecting him from people who just don't understand those with special needs. The ideal, of course, is for your child to be able to stand up for himself and to advocate for the care and services he needs.

One simple way to start doing that is giving your child simple choices: what to wear, what to eat, where to go, which activities to do. I was so excited when Max asked to sit in on his IEP a couple of years ago, and he has ever since.

Sabrina has helped Max better stand up for himself, too. Especially when she acts obnoxiously or bosses him around. "You're mean!" Max started telling her this year.

Last night, I walked in the door and encountered a pouty Max, who wanted to go see the movie Sing. He's been asking to see it ever since he first saw a preview several months ago.

"Max, it's not out yet!" I said.

"Yes, it is!" he told me.

"No, it's not—it comes out on Christmas," I said.

"YES IT IS!" he insisted.

"OK, let's look it up," I told him. And I walked over to my computer and Googled. And wouldn't you know it, he was right.


"I'm right!" he gloated. "You're not right!"

And he kept reminding me of that until he went to sleep.


Image of Rocky courtesy Universal Pictures

Wednesday, December 21, 2016

A brother's loving film about his sister with Down syndrome: Kelly's Hollywood


As parents, we do our best to make our children happy, which includes indulging their interests/obsessions. Over the years, Dave and I have bought a whole lot of purple objects for Max during his purple phase, taken him repeatedly through car washes during his car wash phase, and basically camped out at our local fire house so he could hang with the guys ever since he decided he was going to be a firefighter.

Of course, this aim to please isn't limited to moms and dads, as a new documentary beautifully shows. Directed by Brian Donovan, Kelly's Hollywood tells the story of his sister's aspirations to become an L.A. diva, and his drive to make it happen. Kelly has all the makings of a Hollywood character—she's funny, charming and people are drawn to her. She also happens to have Down syndrome.

Set to premiere on Showtime Showcase tomorrow, the documentary depicts the pair's strong bond, typical in some ways yet not in others. It got me thinking about how far we should go for our children.

 

Kelly has a day job in a workshop, and spends a couple months a year with Brian in L.A. where he's an aspiring actor. Affectionate and expressive, she is not shy about her crushes. Mostly, the objects of her affection are Hollywood stars—David Hasselhoff, The Bee Gees, Hugh Grant, Colin Firth. Thanks to Brian's connections and perseverance, he's able to arrange some meet-and-greets and, ultimately, enable Kelly to star in a live show at a Hollywood theater, complete with red carpet and paparazzi.

Kelly with Brian (left), her parents and her brother Ed the night of her Hollywood show.
Families who have loved ones with disabilities will relate to much in the film, including the grief the mother goes through upon finding out her baby has Down syndrome; the awareness that a child with special needs is still, above all, a child; and the uninhibited joy with which Kelly lives her life.

Baby Kelly, with Brian
I asked Brian what he hoped the disability community would take away from the film. "I would say that it's important to remember the past and how far we've come with advocacy, awareness and exposure," he said. "There is still plenty of work to do, but things have changed. Thank God. Also, I believe true inclusion means honoring and supporting the dreams of those with disability—within reason and realism, but they have to be recognized. They may experience disappointment, hurt and sadness if the dream doesn't come true or even close, but that's OK...we all do. It's just part of life."

Then I asked what those outside our community could get from Kelly's Hollywood. He pointed to a message posted on the Kelly's Hollywood Facebook page by someone who had seen the film:

I just had to stop and say thank you for changing my perspective on things. I never thought poorly or less of a child or adult with Down's. That being said, I was sad for the families. You changed that. Yesterday I found out that a friend of ours had a son with Down's. People felt badly for them. The only thing I now feel badly for them about is that they had to readjust the picture they may have already had (that all expectant parents have) of what the future will look like for their child. Thankfully his parents seem to only see him as the blessing that he is.... Thank you for helping me to see that having an extra chromosome isn't a sad thing. It's just a thing, not bad or good. He's just a beautiful baby that is going to bring his family and the world a lot of happiness.

Kelly best loved the footage in the film when she was performing, Brian mentioned: "There were times when I was shooting, or not shooting, and Kelly would say, 'You rolling Brian!' Or God forbid, I turned the camera off prematurely and Kelly would get mad sometimes. She was a diva and the first reality star."


The movie raised some questions for me about Max. When I went to his holiday concert last week, he spent an entire song gazing adoringly at the girl standing beside him. Hello, crush! Perhaps he will have a girlfriend, although I try not to project my feelings onto him about what happiness means. Whatever makes him happy makes him happy. In the film, Kelly pines after celebrities. Perhaps real-life romance might have been in the cards for her? Did she have the opportunity to meet up with guys her age?

"Kelly mingled with her peers at her workshop, but it never went far romantically," he responded. "She wasn't very interested except a few times in her teens—my mom mentions one time when she said, 'We want to to a hotel room and have sex.' I know she knew, deep inside, she wasn't destined to be with someone famous, though she thrived on the fun of the fantasy. I struggled with my part in it. What if I didn't feed the fantasy? But when I broached my mom about it she cut me off quick and said that it made Kelly happy."

Last, I asked a hard question. I know what Brian meant about supporting the dreams of people with disability. I am raising an aspiring firefighter who happens to have cerebral palsy. I have succeeded in getting his favorite fire truck to show up at our house on several occasions. But how much is upon us to not make things a one-time fantasy and to find opportunities in everyday life where our loved ones can shine? Could Kelly have found a local outlet where she could perform? Could she have perhaps taken acting lessons?

"When Kelly was younger, there weren't local outlets for performance," Brian said. "Maybe if there had been we would have plugged her in and let her rip. Consequently, it was always Kelly and me and our little world of make believe. We were always in 'class' and 'performing.' I used to bring her to my acting class in Hollywood when she was in town. She loved it, but mainly when we let her perform. She didn't like getting off stage!

As for reason and realism, we all have limitations and facing them, no matter who we are or what our dreams are, is a fact of life. There will be disappointment. As a parent, you don't want to see your kids suffer, or be disappointed. So you do the best you can with what you have available. If you can feed their dream occasionally and provide opportunity that will whet their appetite every once in a while, great. My sister pined for her place in the stars and we pursued it together. As they say, it's the journey—for all of us. But it's imperative that we have something to strive for, a passion, a purpose, a dream. That applies to everyone."

Kelly's Hollywood will premiere on Showtime Showcase Thursday, December 22 at 6 PM ET/PT, and will be available to stream afterward. For more information and a free Showtime trial, click here.



All photos courtesy of Brian Donovan

Tuesday, December 20, 2016

All it takes is one open-minded person to change our children's world


Recently, my friend Hannah Jacobs of Family Member messaged me a link to an article about a 33-year-old man with Down syndrome who is a firefighter.

One day about a year ago, Jason Eagan walked into the firehouse in Sandoval, Illinois, and said he wanted to become a firefighter, reports the Belleville News-Democrat. He got an application, and Lieutenant Matt Horn helped him fill it out. Eagan returned daily. A month later, the crew took a vote. Not all were in favor. "But in our bylaws," Horn said, "it doesn't say someone with Down syndrome can't help us."

Eagan passed the firefighter physical, signed the paperwork and joined as a cadet. These days, he helps with equipment, gets trucks ready for calls, does chores around the fire house, pitches in at fundraisers, and makes fire-safety presentations at schools.

"...When he told me that was his dream his whole life, to be a firefighter, I couldn't give up on him," Horn said. "I had to find a way to fit him into our fire department, and so far this seems to be working pretty good."

My heart beat faster when I read that. It gave me hope for Max, who also aspires to be a firefighter. And it just gave me hope, period.

"All our kids need is one kind person who can see past their disability and honor their dreams," noted Hannah, mom to a young woman with intellectual disability. And it's true. As much as parents wish for legions of people out there who can see our children's potential—and see our children, period, not just their disability—that's not often the case. Try as we might, there is only so much we alone can do for our children. But then one person can open a door, as Matt Horn did for Jason Eagan.

I'm familiar with the power of one.

Max has had the good fortune of having a teacher who's made him believe he is a smart guy, and who was pivotal in getting him to read.

He's been blessed that last summer, a camp director welcomed him into a program, instead of turning him away as other camps have because he needs a helping hand.

Max has benefitted from friendships with firefighters at our local station who welcome him with genuine warmth, answer his questions and sit around with him in their living quarters and chat like he is just one of the guys.

This year, the owner of a dance school unhesitatingly welcomed Max to the school for tap dance lessons. And I mean unhesitatingly. Every single time, he is thrilled to go, and he walks out of the class with the biggest grin on his face.

All it takes is one person. That could be you.

Coming up tomorrow: A film by a brother of a woman with Down syndrome who made her Hollywood dream a reality.

Image: Screengrab/BND video

Monday, December 19, 2016

Those times when your parent returns to you


"You have to bite the seeds to release the antioxidants!" the guy behind the counter informed me.

I was having an exciting Saturday morning, which basically meant Dave was watching the kids and I got to hit the supermarket alone. Do I know how to have a good time or what? Afterward, I stopped by an Italian deli. There was a gigantic jar of of figs from Italy on the counter.

"Do they taste good?" I asked the guy. I never eat figs. I don't have anything against them, they're just one of those foods I never think about.

"Here, try one," he said.

It was delicious, tender and perfectly sweet.

Then the guy started talking about the antioxidants. "When the seeds are left over in your mouth after you eat the fig, you've gotta bite them!" he continued.

Suddenly, I swear, I could feel my father standing there beside me, nodding in agreement. It was just the sort of of conversation he would have loved to have. I could see him holding a fig in his hand and tasting it. I could hear him encouraging me to buy some.

These days, everyone talks about multi-grain bread, chia seeds and Omega-3s. When I was growing up, though, health food was more of a fringe thing, and my dad was a devotee. I grew up eating whole-wheat bread, wheat germ, home-grown sprouts and homemade yogurt. Every couple of months, Dad would take my sister and me to the health food store (it was actually called that), where there were giant bins of bran, millet and those other loose grains you see in Whole Foods now. For a treat, he'd let us get dates.

I sure did not appreciate any of this back then, just the opposite. Sunday mornings, Dad would make my sister and me super-healthy oatmeal with raisins and wheat germ, and I would balk at eating it. Inevitably, we'd argue.

My father was very well read and when I was in college, he'd mail me newspaper clips about nutrition—often, one of Jane Brody's columns in the New York Times on vitamins, fruits and veggies, cholesterol, you name it. It was a little bit of love in the mail every week.

Saturday, standing in the deli, I thought about how my dad would have been so into antioxidants. He knew about them before he died in 2011, but he would have been happy to know how popular they had become, along with chia seeds and flax seeds. He would have been thrilled by Greek yogurt. He would have marveled at the various loaves of whole-grain bread in the supermarket aisle and the buzz around quinoa, kefir and fermented foods. He would have been floored that kale has practically become a movement, and psyched that my kids love kale chips and that the baby's favorite food is spinach cakes.

When Max was a tot, his neurologist suggested we give him medium-chain triglyceride (MCT) oil, to potentially help with brain cell repair. Later we gave him Coromega, a mousse-like substance packed with Omega-3s, then eventually transferred him to Nordic Naturals Complete Omega in liquid form. My dad, forever a firm believer in the power of nutrition, had hope that they could do him good.

I brought a half pound of the figs home.

"Ewww, they look like poop!" Sabrina proclaimed.

"Try one!" I encouraged her.

She seemed dubious. She tasted it. Then she spit it out, with the same look on her face as I surely had as a kid when Dad made me try new things.

Somewhere, I thought, Dad is grinning.

Friday, December 16, 2016

The Special Needs Blogger Weekend Linkup: 'Tis the season to share


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: One good way to see how far your child has come

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, December 15, 2016

Today is a day to hug our children tighter, too


By now, you've probably read the viral story about a little boy who died in the arms of Santa. The original article, written for the Knoxville News Sentinel, recounted how Eric Schmitt-Matzen (a mechanical engineer who moonlights as Santa) got summoned to a hospital by a nurse to comfort a very sick 5-year-old. As I write this, the newspaper is no longer standing by the account, saying it cannot independently verify it. Schmitt-Matzen, speaking with The Washington Post and Time, has maintained the story is true and local TV station WBIR has verified some key facts.

I have no idea what the outcome will be. All I know is that even if it turns out to not be true—ultimately the best possible scenario as no boy will have died, although it would raise concerns about how news spreads—it's illuminated something important.

I read it on Monday night, once the kids were asleep, and I sobbed. Afterward, I walked into Max's and Sabrina's rooms and kissed their faces, then I reached through the slats in Ben's crib to caress his. In the morning, I hugged them all tighter, surely as many other moms did to their children. I felt deep pangs of sadness for that child and his family as I saw more headlines crop up in my news feed.

And then, in the days that followed, I returned to my previously scheduled life in which I am primarily focused on caring for my kids and wholly forget to appreciate them.

The life that is a blur of dressing them, feeding them, cleaning up after them, safety-proofing them (mainly the baby), packing backpacks, giving snacks, driving to school and/or yelling at someone that they better rush or they are going to miss the bus, calling a teacher to talk about them, helping with homework, signing them up for activities, driving them to sports, filling out forms, coordinating hangouts and carpools, making sure they have enough clean clothes especially their favorites so someone is not grabbing it out of the laundry and re-wearing it dirty although at some point who really cares, taking them to pediatrician and dentist and the occasional specialist, dealing with the insurance company about said specialist appointment, refilling prescriptions, helping them with their iDevices (and on occasion asking them to help me), buying supplies for school projects, buying toys and crafts and gadgets, buying new clothes and shoes and underwear and socks and accessories, repeatedly saying "No, I am not buying you any more tops/jeans/sneakers/chokers this season" to a certain child, repeatedly saying "No, I am not taking you to another visit to the fire station this weekend" to a certain child, buying sports equipment, buying birthday presents, buying other kids birthday presents, locating their missing socks/homework sheet/tech devices/ponytail holder/sports equipment/whatever, getting them haircuts, bathing them, brushing teeth, bedtime, OMG.

Caught up in the whirlwind of the to-dos, must-dos, doo-doos, oops-forgot-tos and stop whining won't yous, I neglect to just plain appreciate my children. To be sure, there are plenty of occasions when I adore their cuteness, charm, smarts, hearts, personalities and quirks. But I am never fully thankful for my kids' existence until tragedy strikes, either in my own circle or in the news. And then, for a precious small time, I acknowledge that my children are what matters most to me in this world and how lucky I am.

But it shouldn't take a tragedy to do that.

There's a piece of advice I always give to brides: At least once or twice at the wedding, stop what you're doing and for a minute or two really look around. Take photos in your mind. Absorb. Appreciate. "It all goes by so fast," I tell them, "and putting yourself on pause will help you better remember."

Childhood goes by so fast, too.

I am going to take my own advice and pause during the busy days to savor my children. I will take some of those mental snapshots. Maybe, when I think to do it, Ben will have a snotty nose. Maybe Max will be slumped on the couch watching yet another fire truck video. Maybe Sabrina will be glued to her phone, texting a friend. But for a moment, I can be grateful that they are here.

Photo: Feinsod

Wednesday, December 14, 2016

Don't Stop Believin': The theme song of special needs parenthood


A year and a half ago, during an IEP meeting, I was told that Max's speech wasn't going to progress much more. Around that time, I got a report from a district speech therapist that was primarily focused on the challenges of Max's speech. It didn't say a word about his potential.

I refused to be discouraged. 

If I didn't think Max had it in him to improve, who would? 

I do not have false expectations about Max's speech. He will likely always be tricky to understand, unless you know him. Even then, it's not always possible to understand what he's saying. I am fluent in Max yet there are times when I have no idea what he is trying to tell me. 

Still, I knew that at 12 years old, his potential for progress was not tapped out. Because I am that expert known as Max's mom. I'd been seeing small improvements here and there: new words, words said a little more clearly. His speech was inching forward. 

If I didn't think Max had it in him to improve, who would? 

Consonants are the hardest for him—p, b, d, k, f, all of them. I've never heard an "f" or a "p" or a "j" or a "q." Speech therapists have coaxed b's and d's and s's out of him over the years, but they are not sounds he makes of his own volition. 
Last night, I ran an errand and called Dave before I headed home. He put Max on the phone.

"Hi, Mommy!" he said. "How are you?" For years, I was "Ohmmy," which made me perfectly happy. Recently, he's been articulating the initial "m." Two years ago, he wasn't saying "How are you?" either. 

"Hi, Fireman Max!" I said. "I'm great!" 

Then he kept telling me something that  I didn't understand so I finally said, "Max, I'll talk with you when I get home, can you put Daddy on the phone?"

And he said "OK!" The clearest "OK!" Like he'd been saying it his whole life. I had a gigantic grin on my face as I sat in our minivan in the parking lot. 

It turns out Max had been asking if I wanted to have some leftover pizza in the fridge for dinner. "Pizza" is a really hard word. 

But I will take "OK!" I will take every new word or proximity of a word or half a word or new syllable or new sound that comes out of his mouth. It is all progress. There is no deadline. 

If I don't think Max has it in him to improve, who will? 

Tuesday, December 13, 2016

One good way to see how far your child has come

There are several ways to really notice—and appreciate—the progress your child with special needs has made. One is when you visit a place you haven't been to in some time, like a play area or a museum, and see the difference in the way your child behaves and what he can do.

Same goes for attending an annual event, like your child's holiday show at school. Max's extravaganza is tomorrow. I can still picture him standing outside the room where it was held, sobbing, because he was afraid to even come in. Last year, he commandeered the mic from the principal.

Then there are those times when friends, relatives or the neighborhood dry cleaner who haven't seen your child in a while share observations about how he's changed. His speech is getting clearer. He's walking really well. He seems more engaged. These morsels, you devour like the sweetest candy you've ever tasted.

Also! If you happen to have a child who has a habit of repeating birthday parties—the b-day equivalent of that movie Groundhog Day—then you will notice just how far he has come. I have that child.

For the last several years, we've had Max's party either near our local fire station (so he and all the kids could visit after pizza and cake) and at a bowling lanes he enjoys. Earlier in the year, though, he started asking about bringing back Merriloons the Clown. Max met her at a pumpkin picking event in 2009. She came to his birthday party that year, and several afterward.

Throughout the party, I kept noticing how much Max had changed in those seven years.

Progress observation #1: It was great to be out of that purple phase. Back then, everything in Max's life had to be purple. Notice his shirt, the tablecloth, the flowers, the plastic forks and knives. Max used to refer to himself as Purple Max, until other obsessions followed and he became Purple Car Wash Spaghetti Max.


Progress observation #2: Max has gotten considerate. For years, life centered around him and his needs. He didn't much think about other people's needs. But there he was, before the party started, in the dining room moving chairs around at the table so there was room for all the kids and enough space for one friend in a wheelchair.

Progress observation #3: Dave and I no longer had to be by Max's side at every minute. He walked around on his own, chatting with friends and hanging with Merriloons. He went to the bathroom by himself. At one point, I came upon him sitting in the dining room alone, polishing off birthday cake. Years ago, we always had to feed him.


Progress observation #4: Max had fun mingling. For a couple of years, he was obsessed with C, a boy in his class, to the point where we had to write signs that said "Max and C" and print out photos of the child and hang them everywhere in the kitchen. When C and his dad came over for one of Max's parties, I watched and winced as the dad took a look at all the pics of his son. "Max just loves him!" I said, brightly. Meanwhile, Max attached himself to this kid at the party and followed him everywhere. We must have seemed like stalkers.

Progress observation #5: Max didn't melt down when things weren't exactly how he wanted. Instead of getting his cake from Cold Stone Creamery with a photo of his favorite fire truck, I got the same from Carvel, mainly because it's more convenient. When he saw the Carvel box, he momentarily pouted that it wasn't Cold Stone Creamery—but then he moved on.


Progress observation #6: We are lucky to have a growing number of people in our life who appreciate Max for who he is, like his firefighter friends at the local station. A couple of the guys showed up at our house that day in his favorite truck.


Progress observation #7: Sometimes, there is no progress, and that's OK. As I've said, there is no such thing as age-appropriate for your child with special needs. Seven years later, Max still loves having a clown do face-painting and magic tricks at his party. And if it makes him happy, well, that makes me happy.


Monday, December 12, 2016

A cool gift idea for kids and teens


Say you have a girl who is obsessed with clothes, particularly designer labels. Say you have a girl who loooves to go to the mall; you, not so much. Say you hear about a new service, Kidbox, that delivers personalized, seasonal boxes of clothing to girls (sizes 2T to 14) and boys (sizes 2T to 16). You get six to seven items per box for $98—or you pay just for what you keep, and send back the rest. Also cool: The company has a social mission at its core. Thanks to a partnership with K.I.D.S./Fashion Delivers. Kidbox outfits a child in need for every box purchased. And would you like to try it? Yes, please!

The most phenomenal boxes of clothing arrived in summer and fall, with prices way below what any of these items would usually cost. Sabrina wanted to share about her experience, so over to her. 

I recently got some clothes from Kidbox. It is a website where you can choose a whole variety of clothes. You actually don’t know exactly which clothes you’re getting, but you can pick your favorite style. I chose Cool + Casual.

You can also say what you don't like, like big logos or dots, tell them what colors you don't like, and where you usually shop, like at Gap or Target. And you can even say what your personality type is, like artistic or quirky, and what clothes you need more of like tops or school and weekend clothes.

They say that for every box you buy, they dress a kid who needs help, so I think it’s an excellent way of spending your money. Also because they have your favorite brands at lower prices! The stuff that your mom may not want to buy you because usually it's a lot of money.

When the box came to my house I was so excited I immediately opened the package. There were cool letter stickers that you could use on notebooks and stuff. And there was a note from a girl named Jessica who is the stylist. That would be a cool job.

The first thing that caught my eye was this sweatshirt because it is so cute! It's my favorite brand, Butter, and my mom never buys it for me because she says it's a rip-off. My mom said $35 was a great price. I wear it a lot. 

Next I opened a pair of Limited Too shirts in black and white with long sleeves that are good for winter. I can wear the shirts under stuff or alone. Then I pulled a pair of Kensie dark jeans out the box and they were the ones I needed and wanted! I was so happy, I wore them to school the next day. 

This is a Lucky shirt with some cute patterns, and jeggings that were in the package. They are by Free Planet and they have braided pockets. 

Finally I got this pink top with sparkles. It is a brand called 7 For All Mankind, Mommy said it is expensive. I can wear this shirt any time of year. I'm wearing it with the Kensie jeans.

If you need to get bigger sizes you can just send stuff back for free. The clothes are good quality, so they last a long time although I am sure I will need more soon and then I hope we can get another Kidbox.

Kidbox is launching a Kids Board of Directors for kids ages 6 to 15. Parents fill out an online questionnaire here, then record a short video with their kid answering the question, "How can young people change the world and what am I doing to help?" Upload the video to YouTube, then send the link and application to kidsboard@kidbox.com by December 15. Kids selected will attend an all-expense paid two-day conference and workshop in New York City, and will get to work with Kidbox team members on a project such as designing an item of clothing. The Kids Board will also take part in video conferences, and represent the company as local ambassadors for social good. 

Disclosure: We received two Kidboxes to check out, but opinions and clothing enthusiasm are all our own.


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