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.

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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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Read the full AMA here.

h/t BuzzFeed

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5 Things That Matter More to Me Than How Smart My Children Are

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“My niece was born premature, but she is smart as a whip.”

“They told my friend her son was going to have Down syndrome, but he was born totally normal and is just so smart.”

“My daughter struggles to gain weight, but is seriously smart.”

There’s a big emphasis in society about being smart, and as a mother with a child with Down syndrome, I pick up on these sentiments a lot — more now than before my daughter Phoenix, that’s for sure.

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And while there’s nothing wrong with being smart, it’s the emphasis on it as a source of pride that rubs me the wrong way.

I used to proclaim Phoenix’s accomplishments as if they were badges of merit. Sitting at 9 months, walking at 22 months, good speech and sign language, sight-reading at 3. Things she earned that became a collection of milestones that made her life worthwhile. Accomplishments that said “See? Look what she can do, even with Down syndrome!”

There’s a mindset that can develop as a parent of a child with an intellectual disability — one where we feel the need to defend our kids’ existence. Where we need to justify why our child’s life has meaning and value and worth — even though they aren’t smart or have medical conditions or require surgeries. We think that without the presence of the intellectual disability, people would not wonder if our children’s lives held value or worth.

If I was brutally honest with myself, I’d admit that I used to think like this too. I thought, “Life is hard enough without having to live with a cognitive disability.” I used to think I would definitely, 100 percent, terminate a pregnancy with a child with Down syndrome. No question.

I didn’t bank on the faith or support of my boyfriend (now husband), who, despite a chance of Down syndrome, felt in his heart this baby was loved and wanted and was going to be good — Down syndrome or not. That whatever happened, it would be OK.

It wasn’t OK for me. It wasn’t OK for a long time. But it is now. Turns out, I had a lot of work to do on myself, my preconceived ideas, my beliefs, my values and my understanding of worth. Of what constitutes a life worth living. I had to reconsider how important it was to be smart when balanced with all kinds of other attributes that humans possess: compassion, joy, kindness, understanding, affection, acceptance. Attributes I truly want to pass on to all my children, attributes which possess an importance that moves beyond being smart.

I’ve come to see that I don’t need to defend Phoenix’s life. She’s brought so much to just my world; it’s hard to fully describe it. This child made me a mother. She’s made me grow, and for that, I’m thankful. Because of her, I’m more thoughtful, more compassionate, more understanding, more contemplative. I have a wider view of the world, including a better understanding of questions like “Why am I here?” “What is my purpose?” “What is important in life?” “What makes my life rich?”

It doesn’t matter to me how smart my children are.

It matters how hard they try.

It matters that they persevere.

It matters that they get back up and try again if they’ve failed.

It matters that they treat others with understanding, compassion, acceptance and reverence.

It matters if they are kind, forgiving and loving.

The world will not be better for our children if it is filled with people who are smart. It will be better if it is filled with people who are kind. That’s what matters, folks.

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This post originally appeared on Celebrating Phoenix.

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The Question I Ask Myself Every Morning When I’m Exhausted by 9 a.m.

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There’s so much talk about how moms need to care for themselves so that they are able to care for their children. When you Google “secrets of a happy mom,” you might come up with results ranging from new moms to moms of teenagers, and all the ways one can find happiness in those roles of parenting.

They all have a common theme: moms need personal time, exercise, time alone with a husband or significant other, etc. to be a whole person before trying to do anything else.

In theory, it all sounds so easy, so seamless, so sensible. But my reality is not like that.

I wake up every morning before my kids (as suggested), but not for meditation and a quiet cup of coffee while I gaze out the window. By the time I take a quick shower, and get organized with clothes and lunches, it is time to get the kids up and going. By the time I take my kids to school, I have physically lifted my daughter’s 82-pound frame eight different times: out of bed, into the wheelchair, into the bathroom, into her clothes, into her wheelchair again and into and out of the car. And then on top of that, I am pushing a heavy wheelchair and hauling her walker.

I believe my friends who have kids with more involved cerebral palsy have it 100 times harder, and I try not to complain for that reason. But it’s hard, and it’s constant. I silently resent (just a tiny bit) the moms who hop out at school with their seemingly perfect bodies and their skintight yoga pants – when I feel honestly beaten down and prematurely aged, before the clock hits 9 a.m.

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My daughter is delightful, and fun and awesome, and I wouldn’t trade her for anything.  But my muscles scream, and my shoulders and back ache, and I never, ever get a break.  And I accept this reality, I do. But it doesn’t make it any easier some days.

The “New York Times” published an article last year called “When the Caregivers Need Healing” that covered this exact issue, as well as some of the mental and emotional health issues that can arise when caregivers fill this role for their families.

How do special needs moms put themselves first or practice all of the things they are “supposed” to do to stay strong and balanced for their kids? How do they do all of that when their kids need so much attention and energy, and when we moms have so much anxiety?

The reality is, we can’t fall down on the job. We can’t “not be there” to care for our kids. They can’t do it themselves. As special needs moms, we have a great need for self-care.

But how can we make that happen?

A version of this post originally appeared on Parenting Outside the Lines.

The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Strange Place I Found Comfort After Her Williams Syndrome Diagnosis

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I find that comfort comes in unique places. Maybe it’s part of the package that comes with having a super sassy and oh-so-special teenager who happens to have a chromosomal deletion resulting in a diagnosis of Williams syndrome.

When I think about where comfort should’ve come, several places pop into my mind: school — maybe at an IEP meeting where, in my wildest dreams, all went well and she was included in everything she wanted to be. Or, perhaps in the cardiologist’s office — where maybe we’d hear good news that there wasn’t really a heart defect that needed monitoring. Maybe comfort should’ve come from my family or my friends, but it didn’t because truthfully, they don’t know what to say. And if they did, would I be able to shut off all the anxiety to actually listen? No, my comfort came on a football field. That’s gotta be as rare as Williams syndrome!

I must admit, I’m not known as a parent who’s big on limiting my kid. In fact, I’m quite the opposite. Typically her dreams and goals propel me forward into circumstances that sometimes, frankly, are awkward. My daughter decided, on her own that she wanted to be a cheerleader in high school. Yep. Pom poms and all! While I will never understand why this was her goal at the time, I thought it was only fair to give her a chance.

She was added to her JV squad in the tenth grade as a sideline cheerleader. My husband and I explained to her that she would become involved in a demanding practice and game schedule, but she didn’t care. I told her she’d have to keep her grades up and do all of her homework. Again, she didn’t care. She pressed on and agreed to the challenge.

I attended every practice with her and I will never be able to convey all the fear I felt. Would the girls like her? Would she learn the routines? What would happen if she messed up? How would the coach treat her?

Three times a week, I went. I felt like her roadie or something. I took pictures and recorded videos. I watched. I hoped. I held my breath while she stunted.

The girls were to memorize their sideline cheers and routines as prep for the start of football season. You’d think it was me being put on the spot for all the nervousness I felt!

The coach and I chatted as we walked to the football field and watched the girls form two lines. We looked on as they began to call cheers. I held my breath. It was my daughter’s turn. The coach glanced sideways at me and I nodded. Much to my amazement, a small miracle happened. My daughter called the cheer and the girls followed her lead. She didn’t miss a beat. I sat there half shivering as a tear slid down my face. (Thank goodness for sunglasses!) I looked over at the coach and she winked at me.

Right then, I knew. As I sat on that field, I knew that somehow everything would actually be OK. That my daughter would indeed find her path, be accepted and carve out her life on her terms.

What more can I ask for?

The Mighty is asking its readers the following: What’s the one moment, if you’ve had it, when you knew everything would be OK? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Moments I Didn’t Expect When We Said ‘for Better or for Worse’

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When I said “for better or for worse” nearly 10 years ago, I meant it, but in all honesty, I’m not sure what I thought “for better or for worse” was going to look like in our marriage.

Job changes, financial difficulties, arguments over household chores, parenting differences — sure, I considered and expected things like these to pop in our lives, and some of them did. What I didn’t expect, though, were many things we’ve experienced as husband and wife:

Watching the TV screen together during an ultrasound, only to see my empty womb and crumpling into your arms as we began to grieve the loss of the child who was no longer there.

Watching you rush from the delivery room with our second daughter as she was whisked away to the NICU and I lay on the table trying to process what was happening.

Receiving your phone call in the middle of the night while I was away on business that our then nearly 3-month-old baby had been rushed to the hospital by ambulance.

All of these experiences, and so many more like them, have filled our lives, our marriage. And as much as these moments have been painful and trying, and even emotionally, mentally and spiritually paralyzing, there have been amazing gifts provided to us through them. As I look back across the landscape of our 10 years of marriage, I’m amazed at how I also, in my naïveté, never stopped to think about how these difficult times, the ones that no one wants to go through, the ones that I think most couples are afraid to face for fear of what it will do to them and their marriages, would be the most refining and defining moments for us as a couple.

Yes, I still look at you and swoon, knowing that you are the most handsome man I’ve ever laid eyes on; yes, 10 years later, your sense of humor and wit still leave me in stitches each day, but I look at you now and I see so much more. I see the man who has held me together as I fell apart over the loss of our son. I see the man who brought me the desperately needed reassurance that Ava would be in good hands in the NICU and our older daughter, Olivia was being taken care of by family. I see the man who encouraged me to stay calm when Ava was rushed to the hospital and I was gone, the man who was the cool, calm, collected one I absolutely needed at that time, and so did she.

I know that when we said “for better or for worse” a decade ago, you probably didn’t consider any of these moments either, but I hope that you can look back upon them and many others to see the “more” of me that I’ve become since we married, because of our relationship, and I can only hope that you, too, can look upon these days of our lives and see that although they were unexpected, the fruits of these experiences are exactly what we had in mind when we said, “I do”:

– A happy family.

– A loving marriage that grows stronger by the day.

– A bond that even that the most trying times will not break.

– Strong faith.

– Joy and purpose in our lives.

I look forward to the next 10 years with you with a mix of both excitement and peace. There will be so many more “for better or worse” moments in our lives, but I look forward to being better with you because of both the better and the worse.

Marriage and special needs parenting: it’s a topic not often discussed, but it’s important, and it deserves more discussion in our community. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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