Why I Wish for the Day My Son Will Be ‘Too Cool’ to Kiss Me Goodbye

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“I’ll love you forever.
I’ll like you for always.
As long as I’m living,
my baby you’ll be.”

I often quote Robert Munsch’s children’s book, “Love You Forever,” to both my boys when they’re snuggled in and almost asleep.

I think all parents often look at their children and just wish they would stop growing — for them to always be their babies. I loved those preschool years where I was their superhero, where I did no wrong, where there was no other mom better than me on the entire planet, where they knew I could fix any problem they ran into.

Sure, there are stages where we might wish for them to rush through, like those terrible threes or when that first hint of tween attitude shows its face. And yes, it’s so exciting to see them become their own person and participate in new activities and start to plan for their futures. But nothing beats the snuggles and unfiltered love they give when they are little and not so affected by the societal norms around them.

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With my oldest, those snuggles are getting less and less frequent. Sure, in the comfort of home, with just having the four of us around, he continues to snuggle. He continues to express his love. And I think most of the time he still thinks I can fix most of his problems. But we’re seeing it sneak in — like when he asks me to just wait in the car when I pick him up from his school dance. Or the other day when he absentmindedly slipped his hand into mine in the grocery store parking lot and then quickly pulled it away when he realized we were in public.

That’s not happening with Brian. I’m not sure it will ever happen with Brian. He still happily holds my hand everywhere we go. He still asks me to pick him up, 75 pounds and growing, when he’s sad or overwhelmed. He still gives me a hug and a kiss at school drop-off. He runs into my arms at the end of the day (OK, sometimes he just barrels his path to the car so he can get home and have his hour of iPad time). He always snuggles any time he catches me sitting down. And sometimes he’ll try to jump on to my back, even when I’m walking around. He looks for me when anything is wrong, and he asks for me when he’s sad or tired. In his eyes, there is no better mom anywhere in the world, even when I tell him iPad time is over.

When he’s lying in my lap, all curled up like a cat, and it looks almost comical because he’s almost the same size as me, I brush his hair with my hand. I trace the lines of his cheek. I think about how perfect he is. And I whisper to him,

“I’ll love you for always.
I’ll like you forever.
As long as I’m living,
my baby you’ll be.”

There’s a different truth to this when I say it to him compared to his big brother. Though both boys will always be my babies (even if my oldest hates to be called a baby), there are physical, mental and emotional pieces of Brian that guarantee he will always truly be my baby.

With his 11th birthday looming, I go through my cycle of emotions. It’s a cycle that never ends, despite the years and years of diagnoses, despite the progress and then the regressions and then the progress again.

I love him just the way he is. I am honored that I get to be his mother every single day. I love the snuggles and I love being his champion.

How is it possible that I cherish the fact that he’ll never push my physical affection away and that he’ll probably drown me in his love continually for the rest of his life but, at the same time, wish he would push me away? Wish that he would be embarrassed by me.

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That’s the cornerstone of special needs parenting: being able to accept, love, cherish every single bit of your child while at the same time pushing and wishing for change, growth and progress.

It’s funny to wish for a day where your child would be “too cool” to give you a kiss goodbye. But I do. I wish for it, even while cherishing the affection and realizing how lucky I am that he loves me.

This post originally appeared on The A-Word.

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To My Friend Who Doesn’t Know Why I Can’t Hold His Baby

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Dear Dan,

I love you. I love you as a sweet, strange soul that makes the world a kinder place. I love you as one of the few friends who called when Lily was sick and one of only a few who dared to hold her after her surgeries.

I love you as my husband’s best friend, who sees him as I do — perfectly imperfect. I love you as the man who married a great person I have grown to love, too. I love you as my own friend.

That is why what I have to tell you tears me apart — I can’t hold your baby.

I may not even look at him.

Some nights I cry about it. When I hold babies I have nightmares for days of Lily dying. When I see babies, my blood pressure rises and my mind tells me the baby is going to have a seizure and die. No matter what I tell my body, no matter how much hypnotherapy and counseling I do, my body remember watching helplessly as my baby slipped away for 10 unbearable months.

My poor second baby, Lola, had a mother that cried a lot, slept terribly and had to fight every second to stay present and close to her. Paul has similar discomfort, though not to the same extremes. We haven’t talked about it with most people because it seems like we should just move on after 6 years.

But, our bodies remember and won’t let us forget.

It wasn’t until almost all of the baby was gone out of Lola that it started to get easier to be her mother. I think some call it post traumatic stress disorder (PTSD). We are not sure when we will get relief from it or if it will ever get easier.

So, I am so grateful others are moving into our place as you await the arrival of your sweet baby and we will continue to hope and pray something changes for us. But, please know we love you and would give anything to be right in there with you. We can’t and we are sad about it.

With love,

Lisa

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I’ll Never Feel Guilty About Giving My Son With Autism This Treatment

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When my son was born, there were two very different nurses who worked at the hospital. The day nurse was harsh and not at all maternal. The night nurse was super sweet and much more merciful.

I was a brand new mom who had no idea what I was doing. I was panicked they’d even leave me alone with my child. Didn’t they know I wasn’t prepared for this? What if I needed help? What if something went wrong?

What if I wasn’t able to pull off this momma thing?

When the first nurse came in for the third time that day and saw my son was again in my arms, she scolded me. She said that if I didn’t put him down, I’d spoil him.

Her comment terrified me. Was I already spoiling him? Was I already failing as a mother? 

When the shifts changed, I confided my fears to the night nurse, not sure who else to turn to.

She came over, sat down on the bed next to me, stroked my son’s precious little head and said, “You can never, ever spoil them with love. There’s no such thing as too much love.”

These words changed my life.

When my son was 2 years old, screaming every single time I dressed him in socks or put him in the car seat, I was sure I was failing as a parent. I read every toddler training book on the planet. I asked other mommas, hoping they might have an answer. They didn’t. And worse, they also didn’t understand: “Oh, our little Clay sleeps all night long in his own bed.” I’ve never had that problem with Avery.”

Of course I got tons of advice, but most of it implied I was somehow spoiling him. That I was the one encouraging him to continue the difficult behaviors.

I felt terrible. Ashamed. Worthless as a mom.

And then, every once in a while, I remembered the nurse’s words:

“You can never, ever spoil them with love. There’s no such thing as too much love.”

Her words never failed to comfort me, reminding me I wasn’t totally ruining my child. They made me realize part of loving him was helping him through whatever was going on, no matter what other people said.

My son was diagnosed with autism in the midst of the worst meltdowns of his life. Every single day, sometimes three or four times a day, waves of total frustration and pain washed over my son. Rooms were demolished, walls full of holes, windows broken, electronics bashed in. He was bruised. I was bleeding. We both were crying. There was nothing I could do to stop it.

And it wouldn’t stop.

I was beside myself with worry, shame and fear, sure somehow I had caused this. Terrified that he would go to jail one day for vandalism, or worse, hurting someone in a moment of lost control.

It took months to find someone who understood. It took months to find someone that said, “This happens. He is overloaded and his brain is just shutting down. We can figure this out.”

When our occupational therapist said it, I was so relieved I sobbed.

Later she sent me an email. She said she’d been thinking about my son and me all day and wanted me to know I was doing a good job. She said she couldn’t imagine how difficult it must be. She ended her sweet, gracious note with this:

“You are loving him well. I cannot tell you how much I think that matters.”

All too often, I think we’re encouraged to focus on all the things we should be doing to help our children: the therapies, the diets, the doctors visits, the medicines, the schooling options, the life skills they need to master, the social skills they lack.

And we do. We need those things.

But it has been my experience that those things never, ever come first.

That what matters most, even in all those appointments and next steps and milestones, is the love you already feel for your child.

Please never feel bad about that. You’re a mother. You’re designed to love your children in a way that defies all logic. You can second-guess yourself when you give in and take him to the pet store. You can second-guess your decision when you discontinue one therapy to pursue another. You can second-guess whether leaving him at school today was the best decision.

But please, never second-guess love. Never question the love you have for your child.

Because there’s no such thing as spoiling a child with too much love.

Because love is always the best treatment plan.

Because love looks past duty and bears all things, believes all things, hopes all things and endures all things.

We are mommas.

We love.

And it matters.

A version of this post originally appeared on Not the Former Things

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3 Ways My Nonverbal Big Brother Teaches Me to Communicate Better

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Big brothers have a lot to teach their little sisters. For me, my older sibling is constantly teaching me how to communicate better. Without the ability to speak a single word, he’s able to communicate with 100 percent more proficiency than the general population.

Joe was born seven and a half weeks premature with Down syndrome. Early on, he was diagnosed with a motor speech disorder called apraxia of speech. While the cause is mainly unknown, it essentially inhibits the muscles of his mouth from forming the words he wants to say.

In addition to a symbol-supported communication application, Joe uses a combination of sign language, body language and guttural tones to convey his thoughts. Unable to speak, read or write, Joe has faced challenges every day for the past 28 years.

But through those challenges, Joe has taught me more about interpersonal communication than any celebrated professional consultant ever could. There are three key tenants Joe instilled in me:

1. Speak the truth. Joe demonstrates how he feels with no fear of repercussion. Without the use of words, Joe’s tone, facial expression and body language are all he has. There are no words or semantics that he can use to sugarcoat things. For this reason, resolution is achieved much faster for Joe. Collaboration becomes more fluid because there are no hidden messages to decipher. He lets you know what’s wrong, and together, you can fix it.

2. Don’t give up. Joe constantly encounters people who do not have the patience to understand him. As he speaks, they dismiss what he says with feigned comprehension. Through the years, Joe has become skilled in reading tone and body language. He can quickly identify when he is being disregarded and will select a new method of articulation. This perseverance has given him an arsenal of techniques to use with even the toughest of personality types. More importantly, by truly listening to others, Joe understands when he needs to shift from his preferred form of communication.

3. Radiate warmth. Joe has faced intolerance and prejudice more times than I would like to admit. Still, he has an innate ability to overcome it through projecting warmth and happiness. When he encounters someone who doesn’t understand, he smiles, laughs and says hi. He enters each interaction with the notion that he will be your friend at the end, regardless of how it starts. With that mentality, there is rarely an objection he can’t overcome.

Joe has watched me accomplish so many things in life: learn to drive, get a degree, date, move out and travel. Not once did he show a hint of jealousy or loss. In those moments, he celebrated my success and loved me unconditionally. Joe never blames others for what is wrong in his life or fixates on self-pity. Instead, he lifts people up and brings a smile to those around him. He doesn’t acknowledge his own disadvantages; instead, he lives every day as a new opportunity to relate more effectively to those around him.

When I think about how my brother moves through this world every day with tremendous grace and serenity, I can only hope to be half of the communicator that he is. While I often fail, I know he’ll always be there to help me try again in a way only a big brother can.

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Wrestlers With and Without Disabilities Fight in ‘Rough, Rude, Rule-Breaking’ League

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If you hadn’t considered the words “disability” and “pro-wrestling” in the same sentence before, think again. Doglegs is a pro-wrestling group based in Tokyo where people with and without disabilities fight one another. Founded in 1991, the nonprofit league aims to challenge society’s preconceived notions about what people with disabilities can and cannot do.

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The term “disability” is a purposefully loose distinction in Doglegs — competitors live with conditions ranging from cerebral palsy to an intellectual disability to a mental illness, and they sometimes fight each other with little to no restrictions. The league holds matches that regularly draw between 200 and 300 spectators, about half of whom live with disabilities themselves.

Heath Cozens, a filmmaker from Wellington, New Zealand, recently created a captivating documentary (trailer below) about the unconventional wrestling league. “Doglegs” centers on five of the league’s most prominent members, interweaving their personal stories with their performances on the mat. As the league’s 20th anniversary approaches, Shintaro, Doglegs’ star fighter, prepares for the fight of a lifetime: a match against “Antithesis” Kitajima, Shintaro’s able-bodied mentor and nemesis of the past two decades.

The Mighty got in touch with Cozens to learn more about the inspiration behind the documentary, what it’s like to witness a match and what he hopes people will learn from the fascinating world of Doglegs wrestling.

Can you explain what Doglegs wrestling is?

Doglegs is a nonprofit league of able-bodied and disabled wrestlers in Tokyo who fight each other in the name of smashing stereotypes. It started almost 25 years ago as a kind of break away group — there was a feeling amongst the founding members at the time that the disabled community was condescended toward and was kind of suffocating. They felt they weren’t really able to express themselves the way they wanted to, so they formed this league as an act of defiance, really. They wanted to get out there and be rough, rude and break the rules. It was sort of an outlet for frustration.

When it started, people really felt like they were starting some kind of revolution. A lot of it was based in shock value; they wanted to shock people out of their sort of calcified thinking. The wrestlers want people who see their matches to leave entertained, but they also want to leave people with a lot to think about at the end of each match. Since it was originally founded, it has become less of a political force and more a way for individuals to explore.

Wow. So the able-bodied wrestlers and wrestlers with disabilities fight each other?

They certainly do, yes. There are four different classes: people who cannot sit up and fight lying on their backs, people who can kneel, people who can stand and then an open class, which is a mix up of everything. If an able-bodied wrestler is going up against a wrestler with a disability, though, that wrestler might be restrained somehow. For example, if they have a person who is able-bodied going against a person with cerebral palsy, the able-bodied person might have his limbs tied up. But not always. It’s up to the wrestlers.

What was it like to witness your first Doglegs wrestling match?

It was a roller coaster. I was pretty shocked. It starts out with the heaviest class, people on their backs. Sometimes those people can do little more than just lie there. But then you start to focus in and see the moves they’re pulling. You pick your favorite, you start rooting for them. It casts a spell on you. Then the next match will come on, which is meant to be more humorous. You feel weird, you think, ‘Wait, should I be laughing?’ Then you realize — they want you to laugh. It’s part of it.

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Did you at any point feel like it was exploitative?

That’s an important question to consider. Is it exploitation or empowerment? The reason something like Doglegs wrestling is relevant and useful is it forces you to ask where those concerns come from. Why are you so concerned about these people? Are they not agents of their own free will? Why would you assume they’re being exploited? You’re sort of discrediting them by assuming they aren’t agents of their own free will. Everyone is doing it for their own reasons. They’re confronting their disabilities and their demons. Maybe they’re doing it to laugh at themselves, maybe they’re not. Nobody is being forced to do anything — nobody gets paid, and Doglegs doesn’t turn a profit. It’s entirely volunteer-run.

When I first heard about the group, I thought I might have to make some kind of expose. I was coming into that from that same concerned, inclusive, liberal way of thinking. I didn’t realize that I had some condescending prejudices to begin with.

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Can you describe the moment you knew you wanted to make this documentary?

As soon as I heard the words, ‘handicapped pro wrestling.’ Those are loaded words. Even the word ‘handicapped,’ is loaded, right? I thought, is this exploitative or is this empowerment? I played out some scenarios in my head, and I knew that no matter what I found, the answer wasn’t going to be black and white.

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What kind of feedback have you received so far?

Well, the film has only been seen a few times, but I’ve gotten some great feedback. I was kind of surprised that so many people got it and that there weren’t any angry reactions. People really understood it — they laughed in the right places, and they all seemed to have the emotional roller coaster reaction that I’d intended. 

Is there a moment you realized this film had made a positive difference in someone’s life?

There was a guy at one screening who was still talking with me half an hour after the question and answer session had ended. He was fighting back tears, and he said, ‘I just want to say thank you. Thank you.’ He had spina bifida, and he’d trained as a mixed martial arts fighter. He was deeply, deeply moved. I felt so happy then.

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What do you hope people, with disabilities and without, will take away from this film?

I hope that people who watch the film, especially abled-bodied people, will feel less afraid of disabled people. I really want to leave people with a bunch of questions churning around inside. I just hope they feel the same way I did, which is that they don’t know how they should feel about it. That they have lots of questions and strong emotional reactions. I hope it’s a process of self discovery.

On the other hand, I really do want people to have an entertaining time. A good story. So many films about people with disabilities are these generic stories about someone overcoming some big obstacle. Your eyes glaze over  and you think, ‘OK, someone’s going to tell me some inspiring story, blah blah blah.’ This is not your typical film about disabled people. This is a film about interesting people with interesting desires.

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Check out the film’s incredibly compelling trailer below:

“Doglegs” premiered at the Hot Docs International Film Festival in Canada, but has not yet set a general release date. To follow the film’s updates including release dates and screenings, visit the film’s website or sign up for the Doglegs newsletter.

All photos courtesy of Heath Cozens and Doglegs.

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We Took Many Walks During His Sister’s Short Life. This One Stood Out.

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Three years ago on March 21, our baby daughter, Hannah, passed away. Not a day goes by that she isn’t with me. She’s always on my mind and forever in my heart. She was beautiful with chubby cheeks, sky blue eyes and raven hair. Hannah had debilitating seizures and a degenerative disease that took her from us at 16 months old.

But the story I want to share isn’t about Hannah dying. There are a lot of stories written by moms who’ve had children die. As we were grieving Hannah, those stories gave me hope that I would survive this heartache. This story is about our child left behind.

While we were living through Hannah’s journey, my husband, Greg, and I were consumed with seizures, airlifts and ambulances. For our then 5-year-old son, Wes, gone were the days of lingering at preschool and playdates in our backyard.

And yet without being conscious of it, we were also caring for Wes. The things in life that didn’t seem to really matter before all of a sudden became the glue holding us together.

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One thing in particular kept life sane for Wes and me: strolling. Wes has always been the kind of a kid who loves to be outside. Me too. When Wes was baby and he started crying, we’d go outside and sit in the grass and wait to see what might happen. An ant crawling up his leg, a breeze rustling the leaves in a nearby tree — all of it would calm him and me, the very frazzled mom, and we could continue with our day.

When we moved from our cozy home on Bainbridge Island, Washington, to a little rental in Seattle so that we could be closer to Seattle Children’s Hospital, nature again became our salvation through our strolls.

Our walks could be short or last for hours. It gave us time to connect, unwind, be silly and focus on each other. Wes would grab his cute yellow Crocs, stand at the door and say, “Mama, can we go for our stroll now?”

Wes and I took hundreds of strolls during Hannah’s short life, but I have a favorite. It had been a really rough morning. Hannah woke up with a seizure that racked her small body. Her heart was racing, her eyes were rolled back and her breathing was erratic.

Greg and I jumped into our routine. He called 911 as I put the hospital bag pulled together. He went down the long staircase to wait for the fire truck and then the ambulance to arrive. He walked the crew through Hannah’s issues, while I called Seattle Children’s and spoke with the on-call neurologist to let them know we were on our way again. I’d take over duty at Seattle Children’s once Hannah was out of the ER and in her room. Greg left with Hannah in the ambulance, while sirens blared through a quiet Saturday morning.

While we were on the porch listening for the last of the siren’s song, Wes and I heard a faint “thump thump thump” of music. Wes got a little gleam in his eye.

“What is it, Mama?” he asked, shaking his little rump to the beat.

“I don’t know,” I said, unaware of any reason for the music.

“Let’s go see!” Wes shouted, already throwing on his Crocs.

“Right behind you,” I said, grabbing my shoes and jacket.

Wes practically pulled me down the stairs and up the block to the main road. As we moved closer, the music got louder and louder. Wes ran and laughed with a huge smile on his face. The fear and despair of Hannah’s seizure lost to the beat of the bass.

We approached the big ball fields near Green Lake. Hundreds of women and men in purple t-shirts were walking around the track, while the DJ played music to keep the crowd going. Wes joined in the parade. He couldn’t believe his good fortune to be with this crowd. The DJ put on Salt-n-Pepa’s “Push It.” He laughed and danced like there were no worries in the world. Me too. What joy — so needed and so loved. Out of the hundreds of strolls Wes and I took, that one was tucked into our hearts like a precious treasure.

I think of Hannah’s pure love for Wes and how she would watch him with her eyes shining. Her focus on him was a bit deeper than with any other person in the world. During her life, Wes would ask questions about Hannah’s future and assumed she, too, would grow up, become a mom and her disabilities would disappear. His thoughts sustained us throughout Hannah’s journey. His love for her and hers back to him didn’t break our hearts; it made them grow immeasurably. He got to know his sister, living together with her through the last months of her life.

And now, three years later, Hannah continues to teach us. We had another daughter, Mimi, a few years ago. Wes tells Mini stories about how much fun Hannah was and that she was a great sister. We are grateful for all that we have in our lives. We still sit in wonder of our amazing baby. And I count my blessings for my sweet Wes. My child left behind.

The Mighty wants to hear more about relationships and special needs parenting. 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 to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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