My dear autism and special needs parents

My dear autism and special needs parents:

On the days you feel your worst,

remember that you are beautiful

On the days you feel like you don’t know what you’re doing, know that you are brilliant

On the days you feel exhausted and can’t go any further, look back and see how far you’ve come

On the days you feel you can’t handle another battle,

look at your scars and be proud of the ones you’ve won

On the days you feel alone, know that you never are…

Even if you don’t think you can push through, you can – one step, one breath (one coffee, one set of eye pads) at a time💙

Sleep is so often something we don’t get as autism parents. Our kiddos can have a particularly challenging time falling or staying asleep.

For a while our challenge was the staying asleep. Now it’s BOTH falling asleep and staying asleep.

I often wonder how long it takes before the human body can’t take anymore…

I wonder how long I can function on such little sleep.

I wonder how my child can have so.much.energy. without having slept.

And then from somewhere, the strength keeps coming.

Moment by moment, breath by breath, I hold on to hope.

Hope turns the impossible into possible…and sometimes that’s all we need to get us through.

Hope for this moment, hope for this day. Hold on to hope my dear friends.

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The Dance With CHD

June 12, 2013

Today I heard your heartbeat for the very first time. My own heart fluttered in anticipation of all the beautiful days to come. What will you look like? Sound like? How amazing will it feel to hold you to my breast, comfort you, keep you safe…Your heart was beating so rapidly and loud. The doctor said your heart is very strong. It was the most beautiful sound I’ve ever heard.

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September 12, 2013

You’re a BOY! I knew it! I felt it with every part of me…and I also felt for weeks, that there was something wrong. The ultrasound technician was hovering too long today. She stopped talking. She was intent and focused. Repeated freezing of the screen, contrasting red and blue…The doctor explained there is something significantly wrong with your heart. He didn’t give much detail, only that we will need further testing in the next few weeks.

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September 24, 2013

 You have coarctation of the aorta. We are being referred to St. Christopher’s Hospital for Children. Oh – and we’re not supposed to Google…I’ll behave – for now. Because maybe, just maybe, if I don’t Google, then it’s not real. There’s a chance this could all be a mistake…some blip on the screen that was misread. This is one time when I pray my intuition is completely wrong.

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October 2, 2013

We went to St. Christopher’s today for a very detailed – and long – echocardiogram. I didn’t want to be there. I hated that I was there. I hated the reason. Despite what I felt in my soul, I prayed they had it all wrong. These doctors would apologize for us having had to drive all this way for nothing but a mistake on an echo. We would stop for lunch on the way home, shop for more nursery items…that’s what I prayed. That’s what I knew deep in my soul, would never happen. Life wouldn’t be the same after today. There’s no un-telling of a truth…Right there, in black and white and gray…contrasts of red and blue…it was all laid out. Your defect was critical…I was critically devastated. “Immediate surgery”…I made it through the consultation, drawings of your heart, questions of whether I’d ever taken any medications while pregnant, family history…I had few tears…I was holding it together. Until I wasn’t…Until I made it to the parking deck and clung to the railing as I sobbed, unable to take another step. As if climbing the stairs would signify the uphill battle we were now about to face.

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June 20, 2017

We’ve been facing battles of all kinds for the better part of nearly 4 years. And on this, the eve of my sweet Luke’s yearly echo, I am yet again reminded that this heart journey never ends. It’s sting lasts long after the scars begin to fade, and like a houseguest who’s outworn their welcome, it lurks in hidden chambers, refusing to ever completely leave. It’s like a lost soul, inhabiting it’s host…never fully here, never fully there…if we are fortunate, it will stay at rest, find peace.

Peace.

I’d like to say I’ve made peace, found peace. But I’ve not…this dance with a disease I can’t see brings tremendous burden…and it’s not Luke’s heart that is the burden. It’s my dance. It’s my own feet that get in the way…I stumble, I trip. I’m falling all over…

It’s my own heart, my own fears, my own anxiety, that are the real uphill battles. It’s in the 2:00 AM wakings – 3 years later – to check on him. It’s in the visual reminders of arterial line scars, cut down scars on his neck, arms, groin, feet…and his back.

The yearly echo is a reminder of how far we’ve come and where we’ve been. It’s a yearly dose of reality slapped square in the face. I wish I could say I am beyond the anxiety and the fear that this day brings…but I’m not. I clumsily continue the dance, stumbling with the ghosts. They can’t ever leave because they are the truth of the past. They hold all that was ever lost, all that has ever been gained, and all that is yet to come. I fear to let them go, I will lose footing on sacred ground. That I will forget, that in great pain and grief, the dance must continue. And I understand that while I may dance with peace and acceptance for a song or two, ultimately, my partners will change – often. It’s the impermanent nature, the uncertainty, of CHD.

 

 

Now Autism 

I need your help in changing the way the world sees anyone who is different. The words that are to follow are important, and stringing together the appropriate letters to convey what is in my soul right now, feels just about impossible. Writing from my heart can be painful, but it’s 100% real, and real is what I always strive to be.
A few days before Christmas 2016, we went for a second opinion and more information regarding Luke’s cortical dysplasia/cerebral palsy. Our previous neurologist transferred out of state and we had made this new appointment with a very reputable doctor last Winter, waiting a year to see her. Going into the appointment I wasn’t worried. I already knew Luke’s diagnoses and challenges but I wanted a clearer picture, a better understanding, and to discuss some concerns.

So tonight, I want to share with you, and the world, that I have a son, his name is Luke. He just turned 3 and he is so perfect and so beautiful that even now, I still can’t believe he really belongs to me. He makes me believe in God and in miracles. He lights up my entire world…and he has autism.
And although this isn’t shocking to me – I have known in my heart for quite some time – I still have moments of shock. I know in a few days the sting will wear off more fully but what won’t wear off, is the overwhelming sadness and fear for those in this world that are tormented because of their differences. This is where my heart has been sitting since last week. I can’t talk about it without tears. Even as I type this, I can barely see through them all.

I’m not sad for Luke, I’m not sad for me, for our family – Luke is amazing just the way he is. I’m sad for the people in this world who are so closed-minded that they will never see the beauty in someone with a disability. Until you spend some good quality time with Luke, you may think he is a typical toddler, and in many ways, he is. But he struggles – interacting with his peers is extremely upsetting to him – so he doesn’t do it. He has meltdowns. His left hand frustrates him, his left foot isn’t as stable and causes him to sometimes fall or appear very clumsy. Transitioning can be absolutely unnerving for him and he has difficulty expressing and communicating. He is impulsive and at any given time an object could be on a trajectory for your head (unintentionally). He sometimes needs to repeatedly spin in circles (I would barf) or throw himself into hard surfaces – maybe even you.

I could tell you more about Luke’s challenges and things he struggles with, more of his quirks, but instead, I want to tell you who he is.

Luke is capable of giving the best and most amazing hugs and kisses ever. He has a great sense of humor and can make a room full of people laugh. He absolutely loves adults and is extremely engaging and a total sweetheart; everyone who meets him, loves him. He sees beauty everywhere – and he makes sure you see it, too. He is polite, he is caring, and so very sensitive. He is the best and biggest helper. He ALWAYS knows where the sun and moon are at any given time. He has amazing hearing, and tells us when aircraft is approaching long before we can hear or see it. He loves music and has some pretty fancy footwork. He is very bright and super inquisitive to the point of driving me mad most days! He has an absolutely incredible memory. I could go on and on…These are Luke’s gifts. Nothing of which to be ashamed, or to hide, they are uniquely his.
Most simply put, Luke is love.

It’s not disability that robs us. What robs us, are our minds and the negative thoughts we house in them. Each of us is a vessel through which either love and positivity flow, or, negativity and sadness. We have the choice every day as to what type of conduit we will be to each other and to the world. And as long as I am on this earth, I will do my damdest to be sure Luke will only know love and acceptance.

As you’re reading this, you’re perhaps thinking that I have it all together – that I’m so positive – and you’d only be half right. I am positive. I worked for that and earned that many, many years ago in my childhood. It’s who I am, and I thank God, because I never would have made it through without that thought. But having it all together? No way.

This last year has been extremely stressful and challenging as I kept silent in my heart what I knew about Luke, until we received a diagnosis last week. We are challenged daily by his behaviors. I have searched and researched, for every possible activity and experience to give Luke, so as to help him – our nights and weekends have been consumed. I’ve spent so much time at his daycare to help him better interact, his classmates now call me “Mommy” and it’s totally possible that if you were to peek in the window, you’d see me holding someone else’s child, or wiping their nose, or reading them a book, or just plain handing out hugs and giving knuckles. But I don’t mind any of it.
While I haven’t had much time for myself lately, it’s okay, because my son only has one shot at being helped early. Now is the time for the big push. He has made some great strides in the last few weeks and we know it’s from supports my husband and I have sought and have been providing both ourselves and through therapists. Now he will have access to even more and for that, I am so relieved and thankful.

So no, I don’t have it all together and this is not the least bit easy. I have a lot to learn. It’s not as cut and dry as heart surgery (but thank God it’s not heart surgery, again!) I am exhausted most days, cannot sleep most nights, and am often times the primary parent caring for Luke when he is struggling. He and I have a very strong connection that is different from that of he and his Dad. Being able to calm Luke comes very naturally to me and while it’s not always foolproof, most often I can at least desecalate and stabilize, and bring him comfort.
If I can ask one thing, please, educate your children, educate yourself. Talk to your children about the beauty of a world filled with differences. Kids are perceptive; they know when a child looks differently, acts differently, or talks differently. And maybe one other thing – stay connected to the people in your life. If someone drifts away, there may be very good reason, but perhaps not one they are able to, or can share at the time; don’t assume, don’t judge. Your text, phone call, offer to go to lunch or grab a coffee, will speak volumes to them, and could very well be the thing that gets them through some pretty challenging moments.

Remember that this life isn’t about YOU. This life is about others. What joy can you bring to someone else. How might you ease their discomfort. The measure of a life well lived isn’t in the loud displays, accolades, and self-seeking recognition. It’s in the quiet moments when you choose to be a conduit of love and pure acceptance to someone else and no one else knows – it’s between giver and receiver. We can all strive for this, every day.

Enough

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“Do you know how special you are? Do you know how much Mommy loves you?”

As I drew him into my chest, nestled tightly in my arms, I whispered in his ear. I tickled him under the arm, he giggled and squirmed, trying to toddle away – I only had his attention for a few seconds. I snuck a quick kiss on the bridge of his nose, and just like that, he was off again.

He’s 18 months now and ready to take on his world. He’s curious, and yet, still cautious. He’s bold. He is relentless and can be impatient. He is determined. He is focused. His enthusiasm is unbridled and untainted. There is adventure waiting, and he’s on the cusp of the age where he knows it. He is sensitive. All animals – fictional or otherwise – are friends (or named, Greta), and are deserving of his hugs and kisses. His heart is real and it is big.

Growing up, I was a very sensitive child. I was the kid who wore her heart on her sleeve, apologized to my animals, made sure no one felt left out. I was the girl who sat with the lonely kid because I couldn’t, not. I treated others – including inanimate objects – with the sensitivity and attention I so desperately craved. I learned early on the world was not as soft as my stuffed animals, and not everyone would treat me in the same way.

I was young, I can’t recall the exact age, but I can pinpoint one of my very first moments of rejection. I wanted to climb in to my mother’s lap. I wanted to snuggle. To feel secure, to feel safe. I was rejected. It was “too hot” or she was “too busy” or I was “too heavy”. Transition to pre-teen years when I was self-conscious, even more sensitive. My self-esteem was a seesaw that in a moment, could plummet to the unforgiving asphalt beneath. I was mocked by my own mother for doing my hair, painting my nails – for what I now realize, was taking a little pride in my physical self. In those moments, teetering low, I prayed the black abyss would swallow me whole. I was devastated. I spent most of my childhood being a social chameleon just to get the acceptance I so deeply wanted. Needed.

I eventually learned to laugh it all off – rejection. My skin grew thicker, my emotions buried deeper, only to be unlocked in later years. I have grown and learned since I was a child. I realized I could live like a victim, I could continue to love in spite of it all, or I could become cynical. My choice vacillated between #2 and #3.

I wanted to be everyone’s everything. I wanted to be the favorite. I wanted to be the pretty one. I wanted to be the thin one. I wanted to be the popular one. I wanted to be the athletic one. I wanted to be the smart one. I wanted to be the creative one. I wanted to be the funny one. I wanted to be the trusted friend. I wanted to be everything – to be it all. The people pleaser – THAT’S ME! I wanted to be loved. I soon realized that in order to have everyone like me, I had to be many things, and it was exhausting. To some, I was too nice, so I needed to be tougher. To others I was too aloof, so I needed to be more sociable. It left me realizing that I no longer knew who I was.

It’s taken time and experience for me to realize not everyone will like me – and that’s okay. I will hold myself to a standard of grace, not perfection.

I am certain as I continue this blog and my honest writing, I may have friends who depart from my life. And I also know, I will gain new ones. Before I started this blog I worried constantly about putting myself out there, and in my inevitable style, made a pro and con list. It was PACKED with “what ifs.” What if someone doesn’t like the real me? What if someone thinks I’m weird? What if I offend someone? What if I’m doing life all wrong? What if someone takes what I write the wrong way? WHAT IF?! And in the pro column, scribbled all by its lonesome, “why not now.”

The time to be real is now. To be authentically and unapologetically, YOU.

Although I occasionally still get stuck on that seesaw and can get caught up in the cycle, I know I cannot be everyone’s everything. I can’t be everyone’s favorite, everyone’s friend. People will love me and people will hate me. People will judge me and people will accept me. Take me or leave me, people will be people and my purpose in this life is not to win them over.

We were not placed on this earth for everyone to like us. We are here to be true to the individual purposes we have been given.

I know one of my purposes: to give all the love I have to a brave and beautiful boy with innocence in his eyes and a spirit bright as the sun. I know I am here to give him myself. My time, my energy, my hugs, my kisses. To put all my heart into raising him, nurturing him, helping him grow into everything he can be. I can’t be a favorite to everyone, but I can be his favorite. Every time I put down the phone, the to-do lists, toss out the worry, the fears. Every time I scoop his 25 pound body into my arms and smell his hair. Every time I lay on the floor and let him crawl all over me. Every time I make his day by taking him to the park for a run, act silly and [so badly] dance around the room to watch him laugh. Every time I play cars, roll the ball, and scream and yell just because we can. Every time I rock him and sing our special song. Every moment I am consistent and faithful in following through on my promises to him, and to raising him with all the best that is in me – that is enough. Every hour. Every day. Every week. That is why I am here.

I have a little boy who needs to know that being himself is more than enough. And when the day comes when the world reveals its true colors and his heart is bruised, I will not let it harden. I will tell him,

“Do you know how special you are? Do you know how much I love you? Always be you, no matter what. You are more than enough. Not everyone will like you, and that’s okay. You are loved. You are always loved.”

We are all enough. You are enough. I am enough. Quirks, flaws, highest highs and lowest lows, you are enough. Don’t you ever change. You are loved. Always loved.

Motherhood – Part 2

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This piece first appeared on the St. Christopher’s Hospital for Children website as a 3-part blog series.

http://stchrishospital.blogspot.com/2015/05/guest-blogger-laurel-youse-mother-of.html

GUEST BLOGGER: Laurel Youse

Monday, May 11, 2015 – Part 2: Motherhood

Mothers dig deep. We open ourselves to love in spite of the cost, in spite of the unknown. We harbor great burdens, hide sorrows only our hearts can know, and we relish in great victories and amazing joys. We cling to hope that is steadfast and sturdy and cherish the moments when a tiny, smiling face, an intentional and knowing glance, the tight squeeze from a fragile hand, can cast all doubt away. We find strength often times not of this world. We find the power to love unconditionally and without reserve. We find faith. Or maybe it finds us.

In the months and year that would follow, our little growing family would find itself faced with multiple challenges – a diagnosis of HELLP Syndrome for me, requiring early and immediate delivery of our Luke, heart surgery at St. Christopher’s Hospital for Children for Luke and the diagnosis of a kidney defect, ongoing physical and occupational therapies, and always more tests and procedures. And in the midst of all this – this path I certainly did not choose – I have found joy. Yes. Beautiful, bountiful joy.

While life can still be scary and uncertain, and although the original dreams I once had are gone, they have been replaced with better ones. Brighter ones.  More meaningful ones. The plans I made – expectations of the perfect birth, hearing his first cry, snuggling my newborn on my chest, nursing my son – those things still hurt a little. Some days, they hurt a lot. Maybe they always will. Developmental milestones – I will never take for granted a spoken word and no step will ever be considered ordinary. Yet, I’ve had great privilege – the honor – to know my child more intimately than most. I’ve sat at his isolette for hours, memorizing every feature, every crease and line. I’ve fought for him, prayed for him, whispered into his ear how loved he is, how his mommy is always there. I taught him how to drink from a bottle to rid him of that dang NG! I’ve shuffled bunches of machines and tubes and wires just to hold my baby only to have the pulse ox alarm with every slight movement. I have navigated my way through medical jargon and cared for my child in ways that are natural and ways that are very unnatural. I have learned him like the back of my hand. I have seen his heart from the inside. And his heart – his beautiful, perfect heart – was broken so that mine would one day heal.

This year – MOTHERHOOD – has taught me FAITH, JOY, PATIENCE, LOVE…and even more FAITH.

Luke’s heart taught me how to use my own: To be present in all the moments of life because tomorrow is never promised to any of us. So laugh. Cry. Give sloppy, wet kisses and squeezy hugs. Be positive – even when it’s hard and you think you can’t; dig deep. Give freely – your time and your love. Be not only a pillar, but an example of strength for your family. If you are reading this you have likely been touched by a child and although our journeys may be different, in many ways they are much the same. The story in your heart is the universal story of mothers. A mother’s heart always knows, always believes, and always whispers hope. Each one of our children has been born to us of perfect love and in that love we too, have been reborn as Mothers.

There is faith. There is joy. There is kindness. There is purpose in pain – we have to find it. And when we do, embrace it – as tightly and lovingly as a mother embraces her child. Nurture it and watch beautiful, bountiful life flourish. The gift, the blessing, of motherhood.

Mother’s Day – Part 1

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This piece first appeared on the St. Christopher’s Hospital for Children website as a 3-part blog series.

http://stchrishospital.blogspot.com/2015/05/guest-blogger-laurel-youse-mother-of.html

Guest Blogger: Laurel Youse, mother of Luke

Friday, May 8, 2015 – Part 1: Mother’s Day

I was never really any good with kids. Growing up, I rarely babysat and the times I did, I really didn’t care for it much. Once I actually figured out how to hold the baby, it was guaranteed he or she would cry. If anyone had told me when I was younger that they thought I would be a great mother, I could be certain that they were lying. As a child, I didn’t have the best role model for motherly love – frankly, my experience taught me what a mother is not. My inept maternal instinct led me to believe it was best I did not venture in to the realm of children. That was all up until the last couple of years, when everything changed.

When Scott and I married 10 years ago, our life was perfect – just the two of us. We enjoyed our carefree lives –worked hard, played hard. We did what we wanted, when we wanted. Life was good and life was simple. And then it came calling…that still, small voice, deep from within – we wanted more. It doesn’t happen for everyone, but for us it did – that parental calling – the desire to be someone more and give to someone “more.”

This Mother’s Day marks three years since I knew I was pregnant. I say “knew” because it’s true – I knew long before a test could tell me. In that instant, that sweet moment in time, I was changed – at a cellular level, I was altered. I now had a fire in my soul and an instinct to go with it.

Just as the tiny baby in my belly was growing, so too, was the love and joy quickly building in ways I had never before imagined. The moment it all became very real, that defining life moment, as I lay on an exam table at St. Christopher’s Hospital for Children and first heard the words “life-threatening,” “critical” and “heart defect.” My breath caught in a place somewhere between Heaven and Earth and I could hear my own heart beating out of my chest. Time stopped. All of it. Within mere hours every dream, every plan I had made was replaced with fear.  How could I love a baby I might lose? How could I open myself to the possibility of that devastating pain? But I didhow could I NOT?

I vowed to love and protect my son – every ounce of him. In the weeks leading up to his diagnosis in utero, something within me already knew. I have no way to describe it, only that my heart was being prepared for Luke. I would love him if he were born with a syndrome, if he were born with a deformity, if he were born in any way other than what this world deems “perfect” because for me, through the eyes of his mother, he was already perfect in every way just as he was. My commitment to love him was pure and honest, and I knew it might even hurt. It has hurt. A lot.