To the Little Girl Who’s Teaching My Daughter How To Be a Friend

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After my daughter, Lola, was born and before the roller coaster of health issues came to fruition, I sought out a group of women who had babies. It was a way for my daughter to begin socializing, and it was key to maintaining my sanity as a new mother. Our children would roll around on the floor together, and we’d talk about things like how breastfeeding was going, what kind of nap schedules we were implementing and so on. I never thought much about the fact that Lola didn’t really interact with the other babies. I mean, what was she to do? Come up with sophisticated games to play at just a couple months of age? But now looking back a few years later, many red flags should have gone up. She didn’t look at the other babies, she didn’t try to steal their toys and she didn’t coo with them. She was just sort of in her own little world, and of course she was — she didn’t have the ability to understand the use of her vision.

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Even with Lola’s diagnoses, we would continue to put her in social situations with other children because, special needs or not, she still should be set up to make friends, and she genuinely liked being with other kiddos. We started small with just taking her to a gross motor skill class at her therapy agency. From there, we began to drop her off at Child Watch at the YMCA. We soon enrolled her in a three day a week/couple of hour a day preschool. And you could tell in each environment she began to blossom. Not only did she like being around the kids, but she was learning from them with the use of her sight. It took some convincing, but when faced with the decision to enroll her in an all day preschool program, we reluctantly agreed, and I’m so glad we did because she loves her school peers. All of these opportunities to make new buddies have been good for her, but there’s one place where she never had a friend — and that’s at home.

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Thankfully for Lola, she’s finally getting to experience what it’s like to have a friend of her own and that’s because of a little girl named Paisley. Paisley is our 4-year-old neighbor whose wonderful mom cares for Lola on occasion. Lola and Paisley became buddies over the summer, and it has been a true joy to watch their friendship blossom. Paisley is teaching Lola more about friendship and social etiquette than I ever could, and she’s brought such happiness to our little girl’s life.

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A few days a week, Paisley will ask to help Lola get off of the bus, and we’ll go on to play for a couple of hours. I say “we” because Lola is still trying to figure out this friend thing. I certainly give them space, but social etiquette is typically not something that comes natural to children with visual impairments. Quite often things likes turn-taking, sharing and other social cues need to be learned over time. And since Lola doesn’t have the ability to use her words yet, I help bridge that communication gap. Thankfully, Paisley understands all of the complexities of being Lola’s friend.

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Paisley is the youngest of three kid,  and her mom has watched other people’s children for years so Paisley is “tolerant” of Lola. I say tolerant because there are days when that’s what it is. When Lola won’t give Paisley her own personal space, Paisley will simply move. If Lola won’t stop playing with Paisley’s hair, Paisley will simply say “no Lola” and go about her business. If Lola grabs Paisley’s toy, Paisley will quite often just find something else to play with. If Lola eats Paisley’s food, Paisley will just ask me for more. Paisley and I are working on teaching Lola how to be a good friend, and Lola is starting to get it, but it will take time. Paisley understands that Lola’s brain works a little bit differently, and she understands that Lola can’t “see” the way she can see. Paisley grasps the concept of inclusion more at the age of four than most adults probably ever will. It is one of the most beautiful things I’ve ever witnessed.

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Lola has come so far in the six months since Paisley has been coming over to our house. Just a few days ago Paisley walked in the door, and Lola began to say “Paisley” without being prompted. Lola wants to use the potty when she knows Paisley has used the potty. Lola intently watches Paisley as she plays with toys and tries to mimic Paisley’s actions. Paisley has patience with Lola and genuinely wants to help her. Whether it’s holding her hand while going up the stairs or translating what she thinks Lola has said, it’s a wondrous sight to see such compassion from someone so young. And when Paisley leaves for the day, Lola hysterically cries at the window because she misses her friend. It breaks my heart to watch, but it makes me happy that she has found her person.

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Just as Lola is learning from Paisley, Paisley learns from Lola. Most recently, we were all reading books and Lola had a book in Braille. I showed it to Paisley and explained that some people read with their hands and not with their eyes. Well, over the weekend, Paisley made Valentine’s Day cards, and she began to poke holes in one of them. Later she showed her mom and explained, “This one is for Lola because this is how Lola may read someday.” She had Brailled the card!

As a mother (especially a mother of a child with special needs), all you want is for your kid to be included. And while Paisley may not understand it now, her ability to appreciate Lola for who she is has been such a blessing to my family — especially for Lola. The friendship between Lola and Paisley may not be “typical,” but the beautiful thing about their friendship is that they are deciding the parameters of it just as we do with our friends. No two friendships are alike and that’s what makes our connections unique and authentic. The connection between Lola and Paisley is one I can only hope will last for many years to come. Lola will need champions like Paisley in her life especially because kids can be downright mean. But all it takes is one person to stand up to the crowd for others to see that a beautiful person worthy of love and acceptance is in there. Thankfully, Paisley already sees Lola for the amazing individual that she is and it brings such happiness to my heart.

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Powerball Jackpot Winner Is a Mom Who Truly Needed It

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Sometimes good things happen to the right people.

When Mary Holmes realized she may have one of three winning lottery tickets in the $564 million Powerball jackpot, she “thought [she] was going to have a heart attack,” she told WECT. The 26-year-old is a mother of four from Brunswick County, North Carolina. She recently had to leave her jobs at McDonald’s and Walmart to care for her kids, one of whom has cerebral palsy, WECT reported.

“I’ve been struggling since I had them,” Holmes says in the video below. “But I wouldn’t trade [anything] because they’re a blessing.”

If confirmed, her ticket will be worth $188 million, according to the video below.

I’m ready to embrace the change,” she told WECT. “I’m very grateful for what’s about to happen for my family.”

h/t Mashable

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Why I’m Not Judging the Mom Who Chose Not to Parent Her Baby With Down Syndrome

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I’m sure you’ve probably read the story about the mother who decided immediately after her son’s birth, that she didn’t want to parent her baby with Down syndrome. Then she allegedly divorced his father for keeping the baby. It was all over Facebook last week, along with everyone’s opinion of this terrible, awful, no good mother.

Please stop judging the mother.

You didn’t just deliver that baby, you don’t know her pain and you don’t have to live her life in her country. It’s easy to make a comment on Facebook like “heartless baby carrying machine” and “the baby is better off without her” and then go on with your own life feeling like you advocated for her child in some way. I’m not condoning her decision, but really none of us have any idea what she’s going through.

One of the things I struggle with most about being a mom within the special needs community is how everyone is willing to show off how fierce their love is for their child, but no one will say how overwhelming their doubts are. There is a dark side too. The only author I’ve found who dared admit it is Gillian Marchencko when she wrote, “I know of other mothers who had children with special needs, and right away they loved them and decided to fight for them. That’s not my story.” After I read those sentences, I remember whispering back to the computer screen through tears, That’s me too. This is the fight of my life. I’m struggling to accept this too.

It’s hard to love. It’s hard enough to love your “normal kids” well on a bad day. When they throw a shoe at you, refuse to eat the food you cook, melt down over getting buckled into a car seat, break a brand new lamp from wrestling in the family room. As a parent you love a lot, and you don’t always get it in return. Think of how much harder it is to love a child with special needs in a society that places great shame on families with kids of disabilities.

This story is getting a lot of publicity. The dad is raising a lot of money on GoFundMe. The mom is being judged everywhere on social media platforms. I think as a culture we need to be a little more responsible about how we use our words on Facebook and Twitter because by judging her, we’ve made it even more difficult for this momma to change her mind. What if she has regrets later? What if down the road she decides she wants to go back? There’s now even more stigma facing her. And remember, one of the biggest factors in her decision to leave her baby in the first place was the shame and pressure her community placed on her. We’re only perpetuating the problem with our words.

We tend to assume that the overwhelming feeling of love for your baby is immediate at birth. If you don’t feel that way, then you are a horrible mother. Yes, there is a natural bond that a mother forms with her child and a love that goes deeper than devastating diagnoses. But sometimes love takes work. Sometimes love is a choice and you have to make it over and over again every single day.

When my son was born I heard his weak, high pitched cry and deep down I thought, “That’s not right.” I saw the back of his head with a big birthmark and strange bump sticking out and again I thought, “That’s not right.” I tried to dismiss those thoughts. Because I was his mother. I told myself, I’ll still love him. I said that within the same hour he was born. In the OR all drugged up and sleepy, I’ll still love him. I was willing myself to love him because intuitively I knew something was off about this child from moment he took his first breath. I will still love him. I will.

I don’t know how I would have made it through the first year of his life without the unwavering support of my friends and family. They held me up when I couldn’t/didn’t want to keep going. They believed there would be good in the midst of all of the pain and struggles ahead. They prayed for me when I had no words for God.

I know y’all think this father is admirable to say he wants to keep his baby with Down syndrome. I do too. I think he’s doing the right thing, and I think he’s going to need a heck of a lot of support (and not just in the form of money).

I also think we need to show a little bit more love and compassion for the mother. She’s hurting. Bad. And she wants it to all go away. In her mind the way out is to give up the baby and leave her marriage. She’s facing tremendous pressure from her family, the people who should be supporting her right now. Again, I am not saying she did the right thing — only that we all need to be a little more graceful. We all have made decisions others don’t — and won’t — understand.

Maybe you know what it’s like to deliver a baby with a devastating diagnosis, maybe you got your diagnosis much later, maybe you’re lucky enough to never have received a diagnosis. Regardless, you don’t know what it feels like to be that mother.

But you do know what it feels like to be judged.

If you’re honest, you also know how hard it is to make a choice to love even when the feelings aren’t there.

Let that be the place where your empathy grows.

And please, let’s all stop judging mothers everywhere.

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The Important Lesson My Son’s Cousin Taught Him Through Music

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My dearest Callie,

I remember how excited you were, 23 years ago, to find out at the age of 2 that you had a cousin.  You don’t remember, you were too young at the time, but I assure you, you were thrilled.

You were less thrilled when you tried to get him to play dolls with you and he declined because even at a year old he was obstinate. But you still loved him and decided if he wanted to play trucks, you would play trucks with him. I think you lived a lot of your life doing what Andy wanted.

Years passed and you were still probably too young to remember Andy before the diagnosis. You don’t remember the sleepless nights or the countless times your uncle and I cried on your father’s shoulders because Andy had Aspergers and we didn’t know what this would mean for him.

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More years passed and you only got to see us periodically because new jobs meant we moved away and more babies in both our families meant traveling was harder.

I know you were old enough to remember staying with us when you were in middle school and Grammy was so sick. You and your daddy had come to say goodbye, and you were both glad to visit us as well.

I knew it wasn’t what you expected, Andy being so different that you had more in common with our 9-year-old daughters than with the cousin who was almost your same age. I braced myself for the explanations and excuses for Andy’s behavior. But I never had to use them. You just loved him and worked extra hard to find common ground. That common ground was music.

Andy had been trying to play the cello for years because he liked the sound, it soothed him. But he didn’t understand “gentle” or “lightly” so when he played he sawed the bow over the strings like he was trying to skin a deer, not trying to play the cello. At first, you tried what everyone does, saying, “play gentle, Andy, like you hold a baby.” But he didn’t understand.

Then I heard you both play again, you, decent for a 12-year-old, Andy, like nails on a chalkboard. I heard the sigh and ran in to prevent the meltdown. But before I got there, I heard my youngest daughter tell you he didn’t know what “gently” meant. I was just reaching the door when I heard you say “Oh” and I thought “oh no, here it comes.”

But then you said what has possibly become the most meaningful sentence anyone has ever said to him: “You’re holding the bow too close to the strings.”

Andy has played the cello gently ever since.

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The Conversation With My 9-Year-Old Daughter That Broke My Heart

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“Momma, what did I do wrong?”

“What do you mean?”

“What did I do wrong to make people not like me?”

“You didn’t do anything wrong. You are a kind, lovable child. The right people see that. It’s the wrong ones that do not.”

This sadly was a conversation I had with my 9-year-old daughter, who is on the spectrum, last night.

I can’t tell you how many times it breaks my heart to have a conversation like this with my autistic child. A child that doesn’t understand the social sphere around her. I see her trying to understand. The gears and emotions turn inside that little head of hers, Trying so desperately to understand the why and the how of things. And for any parent, it can be hard to stand back and let our children face adversity to make them learn a lesson that will help them into adulthood: Not everyone is going to like you.

It doesn’t matter if you are the perfect cup of tea, there will always be that one person who will find fault in you.

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But this lesson is hard for those who don’t pick up on the social cues given to them.

They start to internalize things. They start to think there is something actually wrong with them. All those insecurities like, “why can’t people see me and like me?” plague them. They start to be ashamed of themselves when there is no need. Their self-confidence and self-esteem plummets. And as parents, we watch as our children become shells of themselves. I understand that rejection is a way of life, but even for some adults, it’s a hard pill to swallow.

I read an article this morning about how to be a friend to a person with autism. It was a fantastic article and something resonated with me. How about how to be a friend in general? Everyone has their quirks. Everyone. How about trying to look past what makes a person different. I know I preach that more times than I want to admit. But it’s the sad truth of it.

I watch as my child is rejected and pushed away, told “no” or told she isn’t the desired person other children want to play with. I watch the hurt that comes across her face. Even though she might not understand the reasoning behind the rejection, the emotion is still there. I get that she is a somewhat shy child, and sometimes her play isn’t what others expected, but she is still a child. A child with feelings. A child that often gets her feelings hurt. I think people think just because she understands the world differently she is somewhat immune to it all.

Guess what? She is not. She takes it all in.

For most of her life, she has lived in the shadow of her more outgoing brother. My eldest is the social butterfly, but he is also the brother that was my daughter’s voice when she didn’t have one. He is the brother that tries to include her when she is pushed away or when he sees her by herself.

Now that she is coming into her own, she is being more vocal about how she feels. The joys, the sadness and the times she is angry. As a parent, this is a blessing to see. But with that blessing comes watching the whole wide range of emotions she is discovering.

Teaching children to be kind isn’t a hardship. It isn’t like trying to teach a university level physics problem. Teaching them to be aware of the growing world around them isn’t a hardship.

No parent wants hear from their child that they think there is something wrong with them because others can’t accept them for who they are. I’m trying desperately to make her see that she is worth someone’s time.

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To the Sister Who Gave Students With Special Needs a Chance When It Seemed No One Else Would

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There was a time in our community when orphanages and institutions housed children considered “unteachable.” Left to their own devices, without the tools to learn or encouragement to explore, without love to sustain them, these children did not thrive.

However this one time, in our community, a kind and ambitious woman who was a Sister and teacher at the St. James Orphanage decided to teach the children she knew weren’t allowed to attend the public school. Then, she began teaching others who needed special attention and had nowhere else to turn. This was 1960 and how the Madonna School in Omaha, Nebraska began. 

Sr Mary Evangeline Sister Mary Evangeline gave her students a chance, she gave them love and most of all, she gave them confidence to learn. She worked under the premise that every person deserves dignity and should be taught to live as independently as possible. For many years, The Madonna School was the only option in our community for “special children.” 

She wrote, “I thank God for giving me a heart which cannot be satisfied with just knowing about or reading about these children of God.” 

Sr. Evangeline was not just a teacher but also a student of the children at the Madonna School. She wrote these words as comfort to herself and others after a young girl named Mary Beth died while still a student:

So many times, Mary Beth would smile and say to me, “It’s all right, sister – it’ll be OK!” And now I remember, and I thank God for the message he sent me through Mary Beth. “Don’t worry,” she often told me – and somehow these difficult days, I cannot recall what I did for Mary Beth or what I brought her or if I brightened any of her days – I am only remembering the patience she had with me, her attitude that whatever it was, was all right. In so short a time Mary Beth learned what some of us are still trying to figure out.

We found the Madonna School because my son, Marcus, although in the same building as “normal children,” was being excluded from them in his old school. The administrators saw Marcus not as a socially growing and anxious-to-learn child but instead as a severely handicapped boy with an IQ too low for integration. To me, those with the power were dooming him to failure. When we heard of The Madonna School, we were desperate for an option. 

On our first visit, the school building at that time was in a renovated church with small classrooms and narrow halls. But it was lit with positive energy, with ambition and, I’ll say it again, with love. How could I not choose the school where I felt the teachers wanted my child to learn? They rooted for his success. The halls were not darkened from defeat, which I literally felt like a weight in the public school option. 

This was 20 years ago, and again, much has changed. The public schools in my community no longer express that Down syndrome, in and of itself, is impossible to teach. Although many parents still have to work closely with the schools to promote integration and fair teaching of their children, there are several stories of success. 

The Madonna School, too, has grown and adapted, offering specialized teachers and therapists. All along Sr. Evangeline believed every child should be given the education and tools to be a part of his community, to be as independent as possible, to contribute, to love and be loved. 

In this era, the Madonna School is the option families turn to for a place of safe learning and social interaction, the students build life-long friendships. Students are taught both academic and life skills in an environment that allows positive peer relationships. And once the students reach high school and transition ages, independent living and job skills are an integral part of the curriculum. Sr. Evangeline was one of the first in our community to make adult living and life skills part of the goals for her students. As adults, she said, “I did not want them to sit at home all day with no possibility of being important to others or to themselves.” 

Sr. Evangeline was truly a hero among us; she dedicated her life to the children in need of a teacher and in turn taught our whole community how to value life. “There will always be special people who need special people.” This was her mission. 

Rest in Peace, Sister. My family and many others are indebted to your legacy.

Sister Mary Evangeline Randolph, RSM, was born on September 25, 1919 and died on February 10, 2015.

*All Sr. Mary Evangeline quotes are from her autobiography, I Have Seen Him.

This post was originally published on the Madonna School Blog.

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