To My Son’s Hopefully ‘Never Needed’ Caregiver
Have you written a letter of intent yet? It is a letter written to the person who will take your child if something happens to you. Here is mine…
To whom it may concern;
Except you’re no random person. You were carefully and specifically asked to take on this huge responsibility. It will undoubtedly be the hardest thing you’ve ever done as it has been for us, and there is an immeasurable amount of gratitude and thanks to be given to you. But I’m sure that’s already been taken care of.
This letter is about Noah. The one who this is all about. And there are some very important things you will need to know as you begin your new journey.
Patience. Please give him and yourself so much grace. Give time, and space, and less words always helps in hard moments. And there will be hard moments, many in fact. Be patient.
Don’t doubt his intelligence because he doesn’t speak, and never give up hope that one day he will. He needs someone in his corner believing him one thousand percent until the end. Because he’s capable and he’s so stinking smart. But he will need to be pushed, and stretched just a bit out of his comfort zone for him to grow. Keep pushing.
Pointing and sounds are his main source of communication, but he is learning how to use his talker (acc device) more and more everyday. I would highly encourage to continue with that. Finding his voice, verbally or not is crucial for not only his success but his happiness. Don’t give up on finding it.
Big squeezes, tickles and tosses in the air will always make him smile.
When he taps his chin he’s saying yes.
You’ll need to always have a stock of gluten free chicken nuggets, veggie fries, pancakes and potato chips. Those are his faves and he’ll eat you of our house and home if you let him.
He absolutely loves water and will go towards any he sees without even thinking. Please always keep him safe even when he’s much older and still may not know how to swim or danger.
When he’s sick he likes extra blankets and extra baths. And you’ll get the most snuggles and calmness outta of him you’ll ever see. Take it because it’s a rarity.
Don’t give him a haircut, trust us it’s not worth it. Until he’s ready and shows you he is. Then I’d say try it.
And that’s the biggest one, keep trying.
Take him to the zoo, trick or treating, to see Santa, birthday parties, picnics and parades. Please try. Even if it doesn’t go as planned or doesn’t last long, he deserves a chance at childhood just like any other kid. And it will get better, I promise, each and every time, it will.
Oh and don’t forget you’ll have to advocate too, for rights, acceptance and inclusion. This one shouldn’t be this way but I know you can do it. You’re strong and you’ll want to fight for this amazing kid.
He’ll hold your hand and give you his forehead for a kiss anytime. He’s the sweetest, silliest, stubbornest kid you’ll ever meet. And he will change your world in the best way possible if you let him. You gotta listen with your eyes and with your heart, and he will show you a whole story. His story. And I hope you’ll see that despite the challenges and hardships, it’s truly an honor to be apart of. He’s worth it.
Thank you, from the bottom of our hearts, for being his person and loving him unconditionally until the day we can once again.
Written by, Danielle Mager
Danielle is the proud mama to Noah, a handsome, silly, strong willed, almost five year old who also happens to be on the spectrum. Danielle blogs at story of noahism and shares their journey on Facebook at https://www.facebook.com/storyofnoahism/.
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.
