Support

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Parental Self-Care and Autism

Ah life. Just when I think I’ve learned enough to graduate summa cum laude from the school of hard knocks, it reminds me that I am not done yet. There is always something new for me to learn.

Case in point: I took the day off from work to wrap up some matters related to my child’s “transition to adulthood”. By the way, at age 18, she is now officially known as “my adult” rather than “my child”. Sorry, but (unofficially) she will always be my child. Just as I am still my 81 year old mother’s child.

But back to that fateful day . . . I was feeling pretty good about crossing several things off my continuous-loop To Do List when I decided to text my husband and ask him to pick up a few things on the way home. (Tick tock. First decision)

On second thought, why bother him? I had the day off and that child, I mean adult of mine, would love to Read full post »

Life After Out-of-Home Placement: Interviews with Parents (Part 2)

Dillon is a happy thirteen year old young man with significant behavioral challenges who recently moved to a group home. His mom Sara shares their story with us today.

Lynn: What led to your decision to seek out of home placement?

Sara: I felt that out of home placement was something that would happen around age 18, but for us it came five years earlier than I had expected. My son Dillon is non-verbal, and a joy all the time, except for when he was screaming and biting himself, and later screaming and biting himself while attacking me. It was hard to determine the precise point at which my own lack of sleep and lack of ability to care for him got to be so profound as to be dangerous for him, for me, for our mother-son relationship, for my other kids. When ordinary life is hard, and it continually gets more difficult in small increments, it is impossible to remember that there might be a line, let alone know when you have crossed it. And when other people tell you that you can’t handle this, it is easy to defend all your choices, defend Read full post »

Life After Out-of-Home Placement: Interviews with Parents

As my own child transitions to young adulthood, I look to those who have gone before me for guidance and support. In this week’s blogs, we discuss out of home placement from a parent’s perspective. Two veteran parents, Joy and Sara share their stories with us this week.

Audrey is a beautiful teenager with ASD who is also deaf and has a history of significant behavioral challenges. She recently moved out of her family’s home. Her mom tells us how the family is doing.

Lynn: How is Audrey doing since she moved to her group home. How did the adjustment go? Was it easier or harder than for her than you’d thought?

Joy: The transition for her has been remarkably smooth. I had lots of scenarios in my head before she moved – from complete disaster (she’d be upset and distraught all the time and unable to calm) to very Read full post »

Separating Autism from the Person with Autism?

Kat and Arthur 2015I crave information about autism. I am parent of a child with autism and I work closely with individuals and families living with this complex disorder. 

I read a lot. I listen to parents. I seek to understand those who are diagnosed. My cup is not full. I am still learning. 

There are so many different opinions, viewpoints, experiences, and perspectives that I must often remind myself that perception is reality. No two people with autism look alike. Nor do their experiences. So if I want to continue to learn and evolve, I need to keep an open mind so I can absorb the many facets of how autism affects us all. 

When I read this blog by Carrie Cariello, titled I Know What Causes Autism, I smiled. This is a Read full post »

Keeping Your Cool- Tips for Parents of Kids with Special Needs

Today we welcome guest author, Beth Crispin, fellow colleague and parent, who shares with us some valuable tips on keeping our parental cool when things heat up with our kids. For those who don’t know her, Beth is a health educator at Seattle Children’s and mom to two great kids:

“I am the parent of Mateo age 10, who was diagnosed with Asperger Syndrome in 2009, and Grace who is a typically developing teenager. We live in Shoreline Washington where we make it though our challenging days with a lot of flexibility and some laughter.” 

They say that it doesn’t matter if there is a real or paper tiger, the physiological response is the same. Your adrenaline starts to pump, your breath becomes rapid and blood rapidly flows away from the thinking center of the brain to the extremities (preparing you to run!). As a parent of a child who has explosive meltdowns, I often find myself dealing with the impact and aftermath of stress. While I can’t Read full post »

An Interview with Charlie Cotugno, Founder, Stories of Autism (SOA)

Charlie CotugnoI’ve known Charlie for years and it occurred to me that he knows many of our stories but we don’t all know his. I caught up with him recently and turned the tables on him. Here’s what he had to say.

Lynn: When did you first realize that you were a photographer?

Charlie: It’s hard to say when I first realized I was a photographer. I’ve had a camera in my hand since I was about seven years old and things have just organically progressed to where they are now. During and after college, I would do headshots and band photos for actors and musicians for a few extra dollars but I didn’t consider photography as something I wanted as a career. It wasn’t until 1994 that I decided this was something I wanted to pursue and really began learning all the technical aspects of the art. In 1999 I opened my business and began my career transition. Read full post »

What Is It Like to Live With Autism?

Today’s blog is written by Ben Moore. Ben, age 26, recently shared his insights about life with autism at Seattle Children’s Autism 200 class in November and we couldn’t get enough of his honest, heartfelt answers. Today he shares a little more.

What is it like as an adult living with autism?

Like, how do I even answer this? Let’s see… It’s hard at times. Sometimes there’s too much loud noises. Sometimes people speak too fast – their language gets scrambled and jumbled when I hear it. When I speak, often times what I intend to say is not what comes out of my mouth. Most times it’s hard to sustain my attention for prolonged periods. I can be blunt and easily hurt others’ feelings (I try really hard not to). Read full post »

Ten Myths About Parents of Kids with Autism

Sometimes parents of kids with autism are thought of as superheroes with super powers that allow us to power through day after day, year after year. Alas, ’tis not true; we are mere mortals who often muddle through our days after too many sleepless nights. While we appreciate the confidence others seem to have in us, we also want you to know the reality of being a parent of a child with autism.

1. We understand our child completely.

If I had a dollar for every time I couldn’t figure out my enigmatic daughter, I’d be a rich mama blogger. As a veteran parent, I know her better now than ever but that still leaves me woefully inadequate too many times to count. I remember once when she was much younger and was having difficulty breathing with croup. Her dad was out of town and her brother was asleep in the next room so I made my first 911 Read full post »

Autism and Our Greatest Inspiration From 2014

Cheers to 2014!

Participants from a Cooking Level III class at the Alyssa Burnett Adult Life Center

While the rest of the world buzzes with excitement today, making plans for the evening, reflecting on the days behind us and raising a glass to what the bright New Year may bring, today I have a different vision of what it is we should be ‘cheers-ing’ to. Naturally, we are all compelled by the freshness a new year brings; new horizons for being better, having a clearer focus, ridding bad habits and welcoming new opportunities. 

Last night, as I sat down to reflect on my year, the celebrations, hardships, people and things, that made it so rich and beautiful, my staff sent me a Ted Talk called, ‘How autism freed me to be myself’, featuring Read full post »

Saturdays with Arthur

Arthur, my 15-year-old son, has autism and getting out the house for community outings can be a complex, demanding, stressful and unpredictable journey for both of us.  

Last year, on a gray December Saturday, Arthur and I were flopping around the house in our pajamas. The day wore on and we were feeling restless and confined. Arthur started to pace and gallop. 

A clumsy giraffe in my small kitchen. His way of saying, “not one more minute under this roof.”    

I remember this day because months before this, we had some very rough moments in public. The kind of day when we both return home traumatized. Tantrums in parking lots, meltdowns in bowling alley, aggression in Safeway, bolting in the museum, the sound of breaking glass in the gift shop, nibbling others’ French fries in the food court and sniffing strangers in the elevator. Keeping him safe, apologizing to others when necessary, and helping Arthur to understand the rules of social navigation was overwhelming. I started to wonder if we’d never leave the house—even if it meant terminal cabin fever.   Read full post »