Leaning In... Even When we are Scared
Plus, ways to support Autism Out Loud!
Lean In….
Sometimes I will be sitting in my living room, or taking a shower, or driving in my car, and all of a sudden feel a crippling fear.
It will come out of nowhere almost consuming my thoughts. Paralyzing me.
I will feel it so strongly that I will clutch my stomach or bring my hand to my head, as if trying to wipe away the worry.
Cooper. My son.
I’ll see a flash of his future. A glimpse twenty years from now.
It’s not fear of the diagnosis. Autism. Or even the label. Not at all.
It’s not fear of being different or standing out. Nope, we embrace that here. We encourage it actually.
And it’s not fear of paving our own path. Because there is beauty in achieving milestones and goals at one’s own time.
It’s the fears that I used to not be able to say out loud.
It’s fear for my son’s safety.
Cooper is 14. The paper in my drawer says: ‘Severe, level 3 autism, with an intellectual disability and language disorder.’ It’s tucked away. Under our income taxes and files for work, rarely looked at anymore.
That diagnosis, those labels, while very important, aren’t needed day to day in our world.
Cooper is Cooper. He is learning to type, and he can dress himself and his dream is to fly to Alaska and see the whales. He would go tomorrow if we could.
With that diagnosis though, comes some challenges too.
Vulnerability.
It’s fear of someone hurting him. Or misunderstanding him. Strangers. Law enforcement. Monsters who prey on vulnerability. And what if I’m not there to protect him? Or what if I am and no one will listen to me?
It’s fear of him not being able to tell me he’s sick. And something really bad happens. Or someone abusing him. Verbally. Physically. Sexually.
It’s fear of losing him. Or not being able to protect him from water, fire, strangers and cars. The things he should understand but doesn’t.
It’s fear of him getting bigger. Because strangers are kinder to toddlers than adults. And while most people are kind, some are not. They will see a man and not care to see anymore.
It’s my biggest fear. The one that most parents could never fathom. It’s fear of dying and leaving him behind. Because I know that no one will ever love him like I do.
I used to run from these thoughts. I would feel them and immediately shove them deep down inside, so far down, hoping to never see them again.
That wasn’t healthy. That was avoidance.
Not anymore. I lean in now.
Acknowledging my fears has changed everything for me. Absolutely everything. I am able to be more present now. In the good and the bad and the hard.
Lean in parents. Feel everything. Every fear. Every worry. Take five minutes. Ten even. Think about what is wanting to consume you. It’s fear of the unknown.
So, make your fears known. Take away their power
By acknowledging your fears, you are helping your child, and your yourself.
Then, move on and see the beauty and joy in the amazing moments right in front of you.
Beauty amongst the hard. Nestled in tightly. Waiting for you to notice it.
Need a little sunshine today? Come grocery shopping with Cooper. It’s pretty much the best.
Listen up friends!
Thirty-Six. That’s the number of days until Autism Out Loud will be released. OH, MY GOODNESS! I can’t believe it’s almost here!
So! I have a few favors to ask you. Roughly 15,000 of you will read this newsletter. (That number is AMAZING!) If all 15,000 of you preordered my book, I would probably faint. If half of you preordered, I would do a happy dance around my living room.
Selling books is hard. I didn’t know that before I wrote Forever Boy. I have always been a reader so I just assumed that people would buy my book. Well, that theory was not true. It’s harder than I thought.
It’s also harder to physically find books. Bookstores may carry it or may not. And if they do, they may only order a copy or two. So, preordering is best. It guarantees you a copy! There are two options. Preorder a copy autographed by all three of or order from amazon. Either one is great!
There are also other ways to support us.
Share our book on social media. It’s so simple but it goes a long way. Request the book from your local library or bookstore. Often, you can just do this online. Are you a Goodreads person? If yes, please find our book and click ‘want to read’. And lastly, come to one of our events!
We would LOVE to see you!
Thank you to each and every one of you who is supporting us. This book is going to change the world. I know it!
Kate
I follow you, Kate and I love Cooper and so many kids like him. I’ve done nothing but work with kids and adults with autism for close to 45 years. As direct care, as a supervisor, as a behavioral analyst, as a teacher. There’s more money for children so there’s more education required, but they’re also thousands and thousands of people who work and care for adult with autism. And I’ve seen these kids cared for and I’ve seen their challenging behaviors safely managed and I’ve seen staff caring for them and taking them out and going places and staying for days and nights in hospital rooms with them. I say this over and over, but no one seems to listen. I have never seen anyone hurt a child or an adult. doesn’t mean it hasn’t happened anywhere but the majority of people out there working with these individuals are good and kind. I have to say I’ve only ever worked in New England and maybe it’s different here than some parts of the country, but we have excellent services. I’m deeply worried that Medicaid is going to be tampered with by the current administration and that will change the level of services that individuals, vulnerable individuals receive. But we are out here with your children every single day. Experiencing life with them, laughing with them, crying with them, teaching them and learning from them. I hope people hear this because I often feel like no one pays attention to what is good.
I absolutely adore watching videos of Cooper! It's like watching my grandson Killian, just he is higher on the spectrum. But the mannerisms of Cooper make me think of him every video I watch. Especially the younger videos of Cooper. He is a wonderful young man and he is exactly who is supposed to be and always will! I too worry about Killian, what he is going to do. He goes to high school at 14 but comes home and goes to his room and doesn't come out except to eat and take a shower. I am off Facebook now so I catch you on You Tube and have read your first book and pre-ordered your second right when I could. However, had I known I could get a signed copy by Cooper, I would have waited. I got my first book signed by you in Michigan. I appreciate you and Cooper, you go momma!!💜💜