Do You See Us?

Do you see us? We are the parents who have always parented in an altered universe, and now we are  being asked to live in yet another altered universe with no end in sight.  Do you see us? We are the parents whose children highly depend on structure and routine to feel  secure and safe and less anxious.  We are the ones who need a multitude of people to support our child’s ability to  learn, to play, to speak, to toilet, to eat, to walk, and to participate in the…

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I Need You To Promise Me

A glimpse inside the secret world of special needs parenting: I was packing for my first trip away from my boys in ages. My husband was watching the game. I was mindlessly throwing stuff in a bag. Rushed of course. Drinking a glass of wine. Worrying. Rushing. I was talking through my time away. The schedule and such. Cooper has speech therapy on Tuesday and Friday. Sawyer has hockey on Wednesday and Saturday. Don’t forget Cooper’s meds. The baby has daycare these days. Don’t forget his butt cream. I was…

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I’m the Lucky One

I used to lie in bed at night trying to figure out if this will be all okay. Severe. Nonverbal. Autism. Anxiety. ADHD. Long term care. Guardianship. A whole lotta words. Scary words. Sometimes I wonder how one little 8 year old boy can have so many descriptors. What they really mean, when you add them all up, is that you will have challenges that you will have to overcome. But more importantly, they mean the world isn’t designed for you sweet boy. You will spend your whole life trying…

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No One Tells You

A first child turning 18 is an exciting time in a parent’s life, right? A time when the child you grew within you reaches the age of legal adulthood. It seems like those 18 years went by in a blink of an eye. A child you raised, guided, and encouraged throughout their childhood actually turned out pretty darn awesome. Your role in their life is different now. The little birdie is getting ready to leave the nest. They are preparing to go out on their own and conquer the world.…

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Autistic Teen left with nowhere to live after his Grandmother Dies

If you ask any special needs parent about their greatest fear surrounding their disabled child, I promise you it will always be the same. Who will care for my child after I am gone? That thought has haunted me many times. And it’s a complicated question as well. My son will need lifelong care. He will be a man, not a small child. I don’t know where he will be cognitively. Or if he’ll be able to bathe himself. Or buckle his own seatbelt. I don’t know if he will…

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How Does this End?

When my son was diagnosed with autism over five years ago, I thought it was a race against time. I thought if we did everything all at once, all the therapies and services, we would help him, and he would eventually get back on track. I knew he’d always have autism. I was never one that thought it would go away. But I did think we would help him, bit by bit, and eventually he’d be where he needed to be. Which at the time I thought was alongside his…

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Who will Care for my Son after I’m Gone?

If you ask any special needs parent, they will tell you that their number one fear is worrying about who will care for their child after they are too old or die. It’s mine for sure. I have spent countless hours staring at my beautiful, innocent son and worrying. When I wipe his face. Or his bottom. When I wash his hair in the bathtub. When I walk him across the street or through a parking lot. I worry. He is 8. He needs constant supervision. He will most likely…

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What About After Forever Mom?

Last night I took Sawyer to pick out gift bag goodies for his birthday party. He had so much to say. Riding in the car produces some of my favorite memories with Sawyer. ‘Which is more mom? 16 or 14?’ 16 bud. ‘What is 6 plus 4? It’s 10 mom. How did you not know that?’ I did know that Sawyer. You didn’t let me answer. ‘What friends are coming to my birthday party on Saturday? Wait, let me say their names.’ ‘Lucas, Derek, Braden, Kellen….pause. Mom, did you know…

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