Today was a rough day.

My son, Munchkin, had his second-ever sleepover last night, and none of us got enough rest.

Since sleepover friend was still over this morning, our normal routine of yoga, sensory play and schoolwork did not happen.

My younger son, Monkey, had a doctor’s appointment that he cowered and screamed through.

I taught three sections of a Lego class at our homeschool co-op this afternoon, including a new section of 4-year-olds who require an entirely different set of activities.

By the end of co-op at 3:30 p.m., I was exhausted. I wanted to go home. I was not in the mood to deal with whining and fits, especially from the child who had just spent 25 consecutive hours with the friend he was begging to play with longer. So I was not the nicest mommy as I loaded the kids and the four bins of Legos in the car. I was tired, grumpy and feeling overwhelmed and unappreciated.

Then I noticed how quiet Munchkin was in the backseat.

Me: “What’s wrong?”

Munchkin: “Nothing.”

Me: “How did classes go today?”

Munchkin: “OK…”

Me: “OK?”

Munchkin: “I did all my work and stuff. It’s just… No one said anything good to me today.”

There is more to the conversation. It turns out some classmates told Munchkin he was annoying, which is a separate, heart-wrenching post of its own. But that’s not what was most important to him. When reflecting on the day, Munchkin wasn’t as bothered by the one bad comment as he was by the lack of good comments.

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There is a quote I love that floats around on my Facebook news feed from time to time:

Parents need to fill a child’s bucket of self-esteem so high that the rest of the world cannot poke enough holes to drain it dry. — Alvin Price

I failed at this today. I have lots of good excuses as to why I failed, but when it comes down to it, I didn’t help my child realize just how amazing I think he is today, and I regret that. Ironically, it was because my own bucket was a little on the low side this afternoon.

I don’t know how many times I’ve told my husband or a friend, “I don’t mind doing it all. I just want to feel like someone notices when I do it.” In short, I want someone to say “anything good” about me. It’s a common theme around moms, but today I thought about it from the perspective of my autistic son. For him, it is an achievement to walk into relatively unfamiliar classrooms filled with relatively unfamiliar people. It is an achievement to remember to make himself sit in a chair instead of on a table like he prefers. It is an achievement for him to listen to and follow multiple-step instructions while surrounded by distracting stimuli. It is a huge achievement for him to remember to wait his turn in a conversation, to stick to relevant topics and generally to blend almost seamlessly into a room of peers.

It’s easy to forget this sometimes, because Munchkin is so smart, eager and helpful. It’s simple to watch him smile and play and “fit in” until one moment, he doesn’t. I wish it hadn’t taken that moment to remind me of the insane amount of effort and work he puts into these seemingly “easy” social skills. I wish I’d been better today at filling his bucket of self-esteem.

Looking back at the morning, there are a dozen things I could have praised. He ate breakfast, got dressed and brushed his teeth without being asked twice even though we were off routine and his friend was standing by waiting to play. He was so patient and kind to his little brother when we arrived at co-op. He helped carry things inside and upstairs without complaint. In Lego class, he listened to his group’s ideas, shared his own without interrupting and helped everyone find a compromise. He built a really, truly cool model of a hand throwing a beach ball for our “on the beach” challenge. He never once complained about the timed challenges I issued to the class or the times I asked them all to disassemble creations (both of which would have led to major meltdowns even a year ago).

I understand none of these things needs a trophy or a celebration. I agree with those who will say these are all things he can and should do every day. But anyone can tell you it’s nice to be appreciated. Our kids —especially our kids with special needs — feel the same way. They want and need to hear that we see the things they do right, not just the things they may mess up. They need to hear “anything good.” They need their buckets of self-esteem filled up so high by us that when crummy, nasty, terrible and inevitable things happen to them, they don’t leave drained and scarred.

I was lucky enough to grow up with a mother who made sure I knew two things without a shadow of a doubt: She loves me completely and unconditionally, and she was proud of me. Not because of anything I did or didn’t do but because of who I was. My mom is an expert bucket-filler. Ironically, so is my Munchkin. For many years now, Munchkin has come up at least once a day with a hug to say, “Best mommy ever.”

Like Munchkin and anyone else, I have plenty of moments and even days where no one says “anything good,” moments where I want to give up. Today, I had a lot of them. But tonight, I got up and moved on because I know people love me and people are proud of me. This knowledge is my safe haven, my rock that lets me know I will always be important, loved and valued. It’s also what tells me that building my children’s sense of self-esteem is one of my most important jobs in life.

I spent the evening tonight filling buckets. We played Legos and explored a new “chain reaction” book (I tied knots and Munchkin figured out the complicated instructions). We read books to Monkey. I gave hugs and praised liberally.

I can’t make the bad and ugly things go away for my boys. I can’t stop the world from poking their buckets full of holes, but I can keep pouring the water in.

This post originally appeared on Finders Seekers.

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Sometimes people are able to share the last few days in the life of someone important to them. I have had this experience twice in my life, but what makes this special time I spent with each of them so rare is that they had the best moments of their lives right before the end.

I never knew how important those days would become to me once they were gone.

The first person was my grandmother. For several years, my mother was a single mom and my grandmother helped raise me. We were very close because of all the grandkids, I was the most like her. She helped pay for me to go to college, and when it came time to graduate, my grandmother, even though she was 86 and could no longer walk, made it a point to attend my graduation.

I was going to a private Christian college near Santa Cruz, California. My mother picked up my grandmother in May of 2001 and along with my dad and brother, they drove the four hours to come spend the weekend with me. We went to the Santa Cruz Beach Boardwalk and my grandmother was overwhelmed with joy because it brought back wonderful childhood memories.

After a fun-filled day of eating taffy and looking at the sights, we went out to eat and she had her favorite meal, scallops. The next day, she attended my graduation and later in the evening, we took her home, tenderly tucking her into bed before she said a special prayer over our family. It was the last time anyone would ever see my grandmother alive. She passed away that night, peacefully, in her sleep. That was the most beautiful weekend of my life until recently.

Which brings me to the second person: my 9-month-old son, Dylan.

We decided to go on family vacation in March of 2014. We hadn’t been to Disneyland in a few years and thought our older daughters and our infant son could both enjoy going there. We also decided to include a day at the zoo and SeaWorld. Dylan was all smiles, he loved the characters at Disneyland, especially Stitch, who he giggled at and hugged unlike any child I have ever seen.

He loved the tram ride around the zoo and cried out in surprise when the water splashed him at SeaWorld. I didn’t know he would never get to go to those places again or that it would become the most precious week of my life. Two days after we returned home from our amazing trip, my son passed away from SIDS (Sudden Infant Death Syndrome).

Both deaths hit me hard in different ways and have left scars that will never go away. But those memories of that irreplaceable time with my loved ones help me by reminding me that they were happy while they were here, and I was blessed to be able to share their most special and last moments with them. It’s a well of happiness I can draw from until I see them again in heaven.

The Mighty is asking the following: What’s a memory with a loved one that you didn’t realize meant so much until they passed away? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Natasha Hope-Simpson didn’t have the reaction you’d expect when finding an angry note on her car.

Hope-Simpson, a 25-year-old artist from Nova Scotia, Canada, lost part of her left leg in a hit and run accident back in 2013, CBC reported. Now, she wears a prosthetic device and uses a handicapped parking permit.

Recently, she found this aggressive note on her car after leaving it parked in an accessible parking spot.

The note read:

I have a video of you walking away from your car on numerous occasions, you are not handicapped! The next time you park here I will forward the videos to police with your license plate number. You should be ashamed of yourself!

Hope-Simpson, who still doesn’t know who left the note, was not angered its message. Instead, she took it as a compliment.

I’m kind of flattered about that,” she told the outlet, “because I’ve been working pretty hard on my walk to make it look natural.”

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My brother, Levi, has quite the imagination. For example, he has about 200 figurines, (elephants, cows, Power Rangers, little cheap kids meal toys, you name it!). On a daily basis, he will act out some sort of story with them. Sometimes there is a Power Ranger who has to save the poor elephant from being tortured by villains, or there is the cat and two dogs that will take their “Homeward Bound” trip across our entire front lawn.

brother with down syndrome the mighty

Levi also loves his movies. He likes the action movies, “The Hulk,” “The Avengers,” “Fantastic Four,” and “Power Rangers,” of course. He likes “High School Musical” and “Camp Rock.” When Levi watches a movie, he will watch it over and over and over again. He will watch one particular movie so much that I have them all memorized just from walking in and out of the room! It’s like he studies them so he can memorize every step; so he can be completely engulfed in the story line.

One particular movie, “The Chronicles of Narnia,” took Levi on a special mission. My dad and Levi were picking some beans in the garden. My best friend, Heather, and I had just gotten done horseback riding, and Mom was watering her garden. I remember our neighbor coming by to talk for a bit. But after a while, we noticed Levi was gone! He wasn’t in the yard. He wasn’t in the pool. He didn’t sneak back to his TV. Where did he go?!

Here is a bigger glimpse of our setting. Our vegetable garden is right next to a large cornfield owned by one of our neighbors. While the rest of the family continued to search the yard, my friend, Heather, set foot through the cornfield to see if that was where he wandered to. Finally after about a half-hour, Heather came back through the ears of corn with the adventurous Levi. “What were you thinking?!” we asked. Levi said, in a matter-of-fact tone, “I was looking for Asland!” (Asland is the lion in Narnia, in case you haven’t seen the movie.) He had traveled a quarter of a mile through the cornfield all the way to the tree line, seconds from venturing into the great forest of Narnia.

Though Levi had all of us in a bit of a panic, he taught me another one of his little life lessons that day. Levi may have been completely entranced in a movie, but he had one goal: finding Asland. And he wasn’t going to stop until he achieved it. (Or until Heather set him straight back down the narrow cornfield row.) He showed me that once you have a goal in mind, nothing can keep you from working toward it.

Though every day in our household is a bit of an adventure, I thought how often we just go through the motions of life. Lucky for us, Eric and Levi always add a bit of spice to our lives.

brother with down syndrome the mighty

This post originally appeared on Journey Through a Special World.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When my autistic sister, Elyse (we call her “Deese”) was younger, she had these huge peaceful eyes, like those big liquescent orbs you see in Disney characters. Her skin was pale and freckled, and when she spoke it came out monosyllabic, like the pronouncement of an oracle.

When Deese got older, she stopped speaking in one-word riddles. The peace had largely fled from her face, and the sheen to her eyes now seemed to indicate irritation rather than omniscience. Her once-familiar utterances were replaced with different sounds and, increasingly, by screams. She began to have tantrums more often. It was as if all the frustration that she had built up for years was beginning to leak out. At the slightest provocation, she bit her arm, flapped her hands and stomped so hard standing picture frames fell over. Puberty had brought more wrath into her frustration. Any remaining spirit of compromise was gone.

Deese used to be somewhat tolerant of my mom combing her long hair, but at this rebellious stage, she would no longer accept the attention it required. In the morning, they could be heard in the bathroom together, my mom saying, “Now hold still,” and Deese screaming beyond the limits of human endurance or lung capacity.

“Oh, Leese, you’ve got to get the tangles out.”

My mom has a much more pronounced Michigan accent that anyone else in my family and as a result she drops the initial “e” on words in which it is followed by “l-e.” For example, “electric” becomes “‘lectric,” “eleven” becomes “‘leven” and “Elyse,” to my mom, when she is speaking directly to her, “Leese.”

This is how the two of them sound every morning getting the tangles out:

“Oh, Leese, put your hands down. FFFFF-FFFF-FFFF (the sound of a spray bottle) ARRGHHH! I’m just spraying detangler! FFFFF-FFFFF-FFFF Now, quit tha—ARRGGHH! CLUNK. Oh darn, now you made me drop the brush! I said hands dow—ARRRGGGNN! Leese Anne, you calm down or you won’t get—HHHHMMMPPP! (the sound of a scream muffled by an arm bitten in anger) Stop that. No biting. ARGGHH-HMMPP.”

Throughout this conversation, Deese is also clapping her rigid hands together, hard. These claps are very different from applause. Applause comes from hands cupped around each other, fingers curled. Deese’s angry claps come from rigid, praying hands, held so stiffly the fingers are bent slightly out. When she claps, her hands are like rams butting heads.

There’s so much detangler in the air. I can smell the soapy-sweetness of it from down the hall in my room even though the door is closed. It’s a dull smell, like the smell of an old vacuum or car exhaust on a cold day.

The radio is on WKPR, an AM station that only seems to have one announcer whose voice sounds like a car battery. Every hour, WKPR plays 5 minutes of weather and 55 minutes of commercials. The galvanized voice with a nasal mid-western drawl rambles on about insurance and the ice cream parlor’s 25 flavors. There is static hum behind the announcer. His voice sounds like something from the past — bland, but somehow wistful. The radio’s volume is always turned all the way up to be heard over Deese’s screaming, but when the weather report starts, my mom impulsively reaches for the volume.

“AGGGGHHHH! Quiet, Leese. I need to hear the weather. ARRGGGH! Going to be some rai—ARRGHH! Shhhh. Tomorrow’s looking a litt—ARRRGGG-HMMMPPHH! Quiet! 45 degrees and—ARGH! –‘s all the weather for—ARGH-HHMMPP! Oh, darn it, Deese. You made me miss the weather.”

The radio goes back to 55 minutes of commercials. My mom sets the radio back on the counter and tries to sing something to make Deese laugh. The only songs that have ever worked in this capacity are ridiculous improvised ditties, for example, “Breathe Right na—sal strips/ you put ‘em on your nose/ you put ‘em on your nose!”

But this morning, Deese is too worked up to even notice that my mom is singing, much less be entertained by it. My mom, also accustomed to these mornings, pays little attention to Deese’s screams. She gives up the song and begins to think out loud, as she often does.

“ …Taxes to the post office,” my mom mutters to herself loud enough to be heard over Deese’s screams. “…Broccoli. I have to find…” These thoughts are punctuated by screams. “ArrGGhhH! HHHMMMPPP! ARRRarrrARRR! HMMMMP!”

Somehow mitigating the contrast between my mom’s calm recitation of her grocery list and Deese’s agony, there’s the WKPR announcer continually saying the word “Jackson” in each commercial in a way that sounds like there should be a “y” in there somewhere. “Jaykson’s own… Jykson’s best… Here in Jyakson.”

Every morning, Deese and my mom went through this routine. It was like listening to the March Hare and the Mad Hatter recreate their famous tea party with the radio as the dormouse: the three voices, talking, screaming and mumbling at once plus the crushed dandelion and Dial Soap smell of detangler.

As chaotic as it was, both my mom and Deese were strangely content with this familiar situation. If I ever went into the bathroom for anything in the morning, both my mom and Deese would look up as if they’d been interrupted from an interesting conversation. Even the aluminum voice of the radio announcer seemed to pause long enough for me to get my toothbrush. Back out in the hallway, I’d close the bathroom door on the noise.

“Jyaakson’s own AM 970,” the radio would say, as if resuming an interrupted conversation. “EEEGGHH!” Deese would respond.


The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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This weekend, I got the opportunity to speak at the Ohio Sibs Convention—an organization that supports both individuals with disabilities and their siblings. I came to an odd conclusion. I will without doubt, be the sole care provider for my brothers and possibly my sister one day. I had thought about it before. It would just be like old times, spending every moment with my best friends. But this time it really hit me.

I’m guessing it’s a similar feeling to that of a forced marriage, only with the opposite perks. A prince marries his princess, and they spend their lives in continued luxury, forcing themselves to build a relationship in order to maintain the esteemed family bloodline. They have everything they need, but do they truly love each other?

Then I look at things from my side. I automatically have more mouths to feed, I might be giving up future expeditions with my potential spouse, or what if I don’t even find a spouse because I’m seen as the intimidating packaged deal? After considering that, there is one thing I know I will always have: unconditional love from my biggest companions. We might lose some societal advantages, but we know how to survive together.

Both sides come across as selfish. If the prince or princess does not love the other, then they are not pitied. Why should they be? Everything is handed to them from birth. Even a luxurious wedding. Or me, expressing the hard truths of raising my adult siblings. From society’s standpoint, it’s wrong to consider my own future solely, and complain about a family obligation.

The prince and princess are born to fill very expensive, uncomfortable shoes. I was born to fill the middle class supportive shoes while aiding in the tying, strapping and zipping of the shoes of my siblings.

Which has more worth, luxury or love?

I am making a vow that I will be the future provider for my brothers. I will not do it because it’s the right thing to do. I will do it because I want to. I don’t need to taste wealth or fame to know that the relationship with my brothers is worth so much more. And I need my siblings as much as they need me.

brothers with down syndrome the mighty

A longer version of this post originally appeared on Journey Through a Special World.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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