To the Mommies Who Get to Raise Little Ones With Special Needs This Mother’s Day

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You wake up early every morning, and your body is still exhausted from the previous day… week… month… year. You give yourself a pep talk, take a deep breath and swing your legs over the side of the bed. If you’re super lucky, like me, your husband will have already brought up a hot cup of coffee and set it on the nightstand.

You head downstairs and mentally prepare yourself for the battles and potential triggers that lay ahead. You keep your voice light as you greet your child. Some mornings you get a big excited bear hug, and other mornings you’re met with silent indifference or an, “I’m busy.” You’ve learned not to take it personally.

The rest of the morning is spent getting yourself and your children ready for the day… you administer medications and then brainstorm the best way to get him to brush his teeth. Dressing takes three times as long as you fight your own selfish desire to just dress him yourself to make it go faster, but you know this is a life skill he needs to learn – no matter how long it takes. So you work together, sweating, and help him through it. He wouldn’t eat that morning, but you know that’s not unusual. Still, you feel guilty as you drive him to school on an empty stomach. Come to think of it, you never got a chance to eat either.

The day is full — full of phone calls and paperwork and emails. You set up appointments or drive to appointments. You call insurance companies and pick up prescriptions. You read the information given to you about new therapies and programs, and you try to balance your budget to figure out how to make it work. Horse therapy seems amazing and so does swim therapy, but you can’t get the numbers to agree, so you set it aside for another year, another time.

Laundry, grocery shopping, dishes, vacuuming, dusting, changing the sheets, mopping and all these things get wedged in somewhere as you have time. Sometimes you don’t, and that’s OK too.

At pick-up your heart swells as your child runs out of the school doors to greet you. The teachers tell you about his day, and you are so thankful for him and so very proud of who he is and how hard he works. He sat through the entire school play, and you cry tears of joy on the way home because that was such a big step for him.

Later in the afternoon you go from moments of silly fun to calm to panic in less than five minutes. He ran out the front door again, and you didn’t catch up until he was at the end of the street. Sweating and panting you try to explain how dangerous running away is and are met with a confused stare. Back inside you write a note to yourself to install a new specialty lock. That night you’ll wake up in a sweat because you dreamed he ran again, but this time you didn’t hear the door.

As you build train tracks he points to a toy and says the word that has been baffling you all week. Ah! Finally you know what he’s been trying to say. Relief sweeps over you as you realize next time he asks for it you’ll know what he wants and won’t have to settle in for an enormous meltdown.

You watch him play with his sister as you fix dinner, and your heart swells with joy at the gifts you’ve been given.

Another sunset and it’s time to repeat the routine you did that morning – meds, teeth brushing and getting on pajamas. You go through three different shirts because they were either too scratchy or too tight or too… something. His sensory system is rebelling against clothes, but he can’t sleep naked so you try again, and at the end of the whole thing he winds up accepting the first shirt you’d put on him.

You carry his tired body up the stairs and read him the same book you’ve read for the last eight nights because he loves the routine and consistency. You turn out the light and lay down… rubbing his back and humming for the next 30-60 minutes… or two hours… however long it takes for his body to settle. You look at his beautiful face, and your heart swells. You kiss his forehead before you tiptoe out of the room.

When you make your way downstairs you glance at your to-do list and see that’s it’s not even half finished, but you’re wiped out. Friends have left messages, but they will have to wait for another day. You’re too weary to talk, too weary to do much of anything. So you collapse on the couch and grab a book or the remote and just sit in the peace. If you’re lucky, you have someone sitting next to you… and if you’re really lucky he’ll be rubbing your feet.

You head off to bed and say a silent prayer that your door won’t be opened too early in the night by a frightened little boy who can’t sleep without the comfort and safety of your body next to his. You force yourself to turn off your brain as you lay in the dark going over everything that’s still unfinished and undone and waiting.

You know you’re going to start over again the next day, and the work will never be done. You also know it’s worth it. You know this is your story too. This story is about him, and it’s about you, and it’s about so many other people whose lives are touched by the little person you get to raise and love.

And you know that no matter what anyone else thinks, that all of this – the mentioned and the unmentioned, the hardest things and the most joyful moments – is a gift. Because it’s not that you have to do those things… it’s that you get to the be the one to do them. And you get the front row seat to every miracle.

So to you mommies… the ones who get to do so much and feel so much for your little people with extra needs… Happy Mother’s Day. I hope you have people in your life who tell you not just this weekend, but every day, how appreciated and loved you are. You are beautiful.

meandkids

This post originally appeared on LaurenCasper.com.

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6 Mother’s Day Gifts Special Needs Moms Really Want

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I wonder how many mothers will wake up Sunday morning to breakfast in bed, homemade cards, hugs and kisses, and eating out so they don’t have to cook. And a special gift, you know, like a new appliance or a piece of jewelry.

As a special needs mom, sometimes my life is a little different, and while I appreciate the “traditional” way of celebrating moms on Mother’s Day, the reality is my family is not traditional, we are impacted by disability, and that makes me appreciate other types of gifts.

When it comes to gifts, I might appreciate one of these more than a new vacuum or a diamond ring.

1. SLEEPING IN

Moms function with little sleep, but eventually kids grow up and moms can get some more rest. However, for some special needs moms, lack of sleep is a lifestyle. So on Mother’s Day, let Mom sleep in… for as long as she wants! Don’t wake her up with songs and cards and breakfast in bed. You can do all of that after she wakes up.

2. NO POOP DUTY FOR THE DAY

Someone else can deal with poop on Mother’s Day.

3. A DATE WITH THE HUSBAND

Marriage is hard work. Add in children with special needs and there are a few extra challenges as well. So while it sounds contradictory not to spend the day with the kids (you know, since it’s Mother’s Day) why not spend time – alone – with the guy who helped make the children? After all, that is how things got started.

4. TIME ALONE

Life is messy, and busy, and there is so much to do and so little time. But what if we had permission to have a day for ourselves, with no responsibilities, just to do whatever we want to do? Read that book, take a few naps, watch “Gilmore Girls” on Netflix. Just a day to rest and relax.

5. A CLEAN HOUSE

And let’s just make it clear that someone else is the one cleaning the house, not Mom.

6. TAKE OUT

Eating out on one of the busiest restaurant days of the year is insanity, especially when you have kids with special needs and sensory issues (or mobility issues). Order out. Mom gets to choose. Someone else feed the kids!

I want to pause here and acknowledge the single moms raising kids with disabilities, because I recognize that doing anything for yourself is hard when you have to do it on your own, especially if you do not have family or friends that can step in. This is your day, too. I see you.

And for all the special needs moms out there who will not have a typical Mother’s Day, remember that this day is about you, too. Because your dedication and sacrifice to your child does not go unnoticed. You matter.

So if you wake up at the same time as usual, if there are no signed cards or breakfast in bed, if there is no voice to say “Happy Mother’s Day,” then from across the screen I want to reach out to you and wish you a Mother’s Day full of peace beyond understanding. A day you can see all the good you do for your child. Perhaps a day you recognize the hard, yet focus on the good in the journey.

And if you ever feel like you are failing, remember that I believe God has His stamp of approval on you, and you are enough.

Happy Mother’s Day!

This post originally appeared on Ellen Stumbo’s site.

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To the Woman in the Restaurant I Judged for Being Childless

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Sometimes it’s heavy — its weight crushing me so I can’t take a deep breath. The world speeds up, and I slow down, and I hate you. I hate you for keeping up. Can’t you see the dubbing for the world is off? Can’t you feel it? Your smile looks smug, your makeup… well, just the fact that you have time for makeup!

I saw you having lunch, your legs crossed showing off tall tan boots that likely cost more than my car payment. She doesn’t have children yet, I thought. Once you have children you could never be so carefree as to lunch after 2 p.m. on a Saturday. I was waiting for takeout, and I watched you. Activities had run late, and we were spending money we don’t have on food we shouldn’t eat. You sat with your husband? boyfriend? rendezvous? and laughed as you sipped a glass of wine. Your pants were winter white. There is no way you have kids. I smile to myself, probably looking a little odd, as I imagine white pants on myself, even for an afternoon. You’re thin, like a runner — like someone who deserves their lean body because they worked hard for it. I envy you. Your husband isn’t looking at his phone. You aren’t rubbing your eyes. You’re talking, and you’re happy, and I am feeling guilty for hating you, and I am blaming you for that too.

I pick up our meal and pay. I don’t take my eyes off the debit machine until I see the words “approved,” I smile like it was never a question and take my bags to walk out. I glance over one last time. I notice you are no longer alone with your husband. From the washroom has emerged two children — a boy, maybe 12, holding the hand of his little brother… a perfect little boy with Down syndrome. I look closer now. You’re still beautiful and thin and happy. Your husband is still looking at you rather than his phone. Your pants are still white. It isn’t easy for you. It never was. You’re doing it though. You’re keeping up. You didn’t let the weight of it crush you even though I know you feel it as much as any of us. Today, at least, you let it drive you, and I am so f*cking impressed I could slow clap. If I did, you’d look to me with my messy bun and dog hair-covered yoga pants, and you’d smile because you’d know exactly what I was applauding, and your smile would tell me I could do it too.

I smile again. The weight lessens. I take a deep breath. I’m sorry I judged you, but worse I’m sorry I judged myself.

This post originally appeared on Go Team Kate.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else.  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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How My Son’s NICU Nurses Changed the Trajectory of My Life

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To My Son’s NICU Nurses,

When I was a NICU mom seven years ago, you mentored me, advocated for me and taught me how to be a warrior for my child. You didn’t know it, and probably still don’t, but I’ve carried the things you taught me throughout the years as I’ve learned to navigate the road of having a child with special needs.

Because of you, I learned how to be brave. I was scared to hold my son until I saw you do it and then hand him to me with a calming smile. And with all the surgeries and unfamiliar lines and cords and tubes coming from him, boy, was I ever afraid. But you just smiled.

It was your reassuring presence that helped me while I was here and what I took with me when we went home. Once home, I took your lead and became an advocate, many times having to stand up for what he needs – the same way I saw you do when the rest of the team had different opinions than you. You held your ground and won for my son.

Now that I’m here in the NICU as a staff member, I see so much more of what you do and how much you care for these babies and their families. I especially love seeing how you love these kids, even when no one is looking. You are the reason I went to nursing school and the reason I came back to this very NICU. You are a hero at the bedside and a champion for these kids and their families.

It’s not often that a person can say the trajectory of their life changed because of what someone else demonstrated, but I can, and I am eternally grateful.

This post originally appeared on Nurse Efflorescence.

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Things Only a Mom Knows About Her Nonverbal Son

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My son, Brandon, is almost 4 and is nonverbal. He and I are incredibly close. I can’t tell you how thankful I am for that. Sometimes it scares me a little though. There have been many situations throughout his young little life that I have thought, Wow. No one else would have known what he was just thinking just then except for me. Because of this, it is sometimes hard to leave him in someone else’s care and still fully enjoy an evening.

If Brandon is melting down when you to try to read to him at night, it’s not because he’s being a brat. It’s because you’re reading his Miss Spider book. Yes, that was what he wanted to read over and over at night, but that was last month. This month he wants to read “Pete the Cat: I Love My White Shoes.”

If when you’re reading to him he keeps trying to get out of bed, it’s not because he’s trying to be defiant. It’s because you finally got the right book, but he left his Pete the Cat stuffed toy downstairs. He needs to hold his Pete the Cat while you read the book, so he can make him dance while you read.

If he starts having a meltdown in the grocery store, it’s not because he’s trying to embarrass you. It’s because we always stop at the free cookie counter at Publix before we begin our shopping. He doesn’t know how to tell you, “Cookie!”

If he gets sick and refuses to take his medicine, he’s not trying to be difficult. After all, what 3-year-old wants to take his medicine?  Put it in a Danimal smoothie, give him a straw and he will drink it all up.

If Brandon takes his knuckles and knocks himself in the head, it’s not because he’s crazy. It’s not because he’s violent. It’s because he is intensely upset about something, and knows he has no way of telling you what it is so that you can help him.

If he is having a meltdown in the car (the most aggravating place to hear a child scream), it’s not because he’s trying to make you feel like you want to drive off a cliff. Whatever has upset him is made 10 times worse because he is strapped down in a harness carseat. Roll down his window and he’ll calm down almost instantly. Works like a charm.

If he keeps pulling on you to stand up off the couch, but then just runs away, he is not trying to be annoying. This is part of a very elaborate repetitive behavior. Just watch for a minute and you will see him do about 10 different things (including making you stand up) that are a part of this. He never misses a step in this process.

He’s got some quirks that other children may have. Aside from the elaborate repetitive behaviors, it’s not as though I connect all of those preferences to his autism diagnosis. The difference here is that Brandon cannot communicate or explain himself. He can’t tell you, “I need to get Pete the Cat.” The only way to communicate that is to get up and do it, and hope he doesn’t get in trouble for getting out of bed.

It’s impossible to decipher every move he makes between autism and what I believe is his God-given personality. Not only that, it’s pointless. Brandon is who he is. Whether he does something because of his autism diagnosis, or because it’s just his preference, it really doesn’t matter at this point. A behavior is a behavior, and we’re going to deal with it (or not deal with it) regardless of where it originates.

P.S.: If Brandon is melting down, and you can’t for the life of you figure out how to make it stop, play the song, “Timber,” by Kesha, and it’s all good.

rachael slough the mighty

This post originally appeared on Ramblings of a Special Mom.

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The Man Behind Big Bird Reveals His Most Meaningful Interaction With a Child

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Caroll Spinney is the beloved actor and puppeteer who has brought the characters of Big Bird and Oscar the Grouch to life for 46 years on the iconic TV show “Sesame Street.” On  May 7, Spinney, now 81, jumped on Reddit to do an AMA (“Ask Me Anything”), a popular series where Reddit users can ask people questions about any topic. Spinney is promoting his upcoming documentary, “I Am Big Bird: The Caroll Spinney Story.”

The captivating AMA covered topics including the best and worst parts of Spinney’s time on “Sesame Street,” why he thinks the show appeals to adults as well as children and how puppeteering has advanced during his tenure on the show.

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Via YouTube

But one question prompted a story that outshone everything. A Reddit user asked, “What has been your most meaningful interaction with a child during filming? Or maybe from someone who grew up watching you and relayed a poignant story?”

Here’s Spinney’s complete response:

Okay, here’s one.
This is a very sad story, but it’s real.
I got a letter from a fan who said his little boy, who was 5 years old, his name was Joey, he was dying of cancer.
And he was so ill, the little boy knew he was dying.
So the man, in his letter, asked if I would call the little boy. He said the only thing that cheered him at all in his fading state was to see Big Bird on television.
So once in a while, he wouldn’t see Big Bird on some days, because he wasn’t necessarily in every show. So he asked could I telephone him, and talk to the boy, tell him what a good boy he’s been.
So I took a while to look up a phone [number], because this was before cell phones. And they got a long cord to bring a phone to the boy.
And I had Big Bird say, ‘Hello! Hello Joey! It’s me, Big Bird!’
So he said, ‘Is it really you, Big Bird?’
‘Yes, it is.’
I chatted a while with him, about 10 minutes, and he said “I’m glad you’re my friend, Big Bird.”
And I said, ‘I’d better let you go now.’
He said, ‘Thank you for calling me, Big Bird. You’re my friend. You make me happy.’
And it turns out that his father and mother were sitting with him when the phone call came. And he was very, very ill that day. And they [the doctors] called the parents in, because they weren’t sure how long he’d last.
And so his father wrote to me right away, and said, ‘Thank you, thank you,’ — he hadn’t seen him smile since October, and this was in March — and when the phone was hung up, he said, ‘Big Bird called me! He’s my friend.’
And he closed his eyes. And he passed away.
And I could see that what I say to children can be very important.
And he said, ‘We haven’t seen our little boy smile in months. He smiled, as he passed away. It was a gift to us. Thank you.’

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Via YouTube
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Via YouTube

Read the full AMA here.

h/t BuzzFeed

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