Archive for July 2013

Monthly Archive

Designing a Community for Families Living with Autism

NeighborhoodIf you build it, we will come.

As my child, and we, get older, I’ve been thinking a lot about our living arrangement in the future. I wrestle with wanting her to live with us forever but knowing we won’t live forever. I see and feel the cumulative effect that years of care-giving, including regular, significant sleep deprivation, has had on us. I know that it would be good for her and us to have some separation, some distance, in the same way our son, who is going off to college in the Fall, will have.

In a perfect world, there would be many options from which a family could choose. But what I see “out there in the community” now is far from perfect with very few options available for a large group of soon-to-be young adults with autism. Read full post »

Children with Autism and Blood Draws

Blood drawThe last part in our series on common challenges parents face in getting certain necessary things done with their kids. Today we share an interview with Jason Russo, RN from Seattle Children’s Autism Center about blood draws and our kids.

theautismblog: What are the most common reasons kids with autism spectrum disorder (ASD) need to have a blood draw?

Jason Russo, RN: Blood draws are typically for standard health assessment such as Vitamin D level, CBC (complete blood count), and sometimes ferritin (iron) level, as well as for kids who are on certain medications that require a regular check of the level of medicine in the body. Blood draws may also be indicated for genetic testing such as for Fragile X and other genetic conditions that may be associated with autism. Read full post »

Autism and Getting a Haircut

Very young kids are not known for their ability to sit still. Understandably, parents get a little stressed when an adult with a sharp instrument attempts to cut those sweet baby locks.  After the age of three or four though, most parents can reasonably expect that their child will be able to handle a haircut. For kids with autism who have sensory challenges, it can take years of practice before that tolerance is achieved.

Why is it so difficult?

I wish I had a dollar for every time I have thought to myself or said to her, “I wish I could get inside your body and see what you see, hear what you hear, smell what you smell, taste what you taste, feel what you feel”.  If that was possible, I might be better able to address what makes so many things odious to her.  Short of that, I try to imagine what her perceptions are in different situations.  In anticipation of a haircut, for example I might ask myself:

Will she remember Miss Jodi, the miracle-worker who cuts her hair? Does she remember what we’re about to do to her?  What must it feel like to have her head sprayed with the water bottle? To have a comb pulled through her hair? To have scissors so close to her head? Read full post »

Autism and a Trip to the Grocery Store

My son has autism. His name is Arthur and he is 13 years old.

I have found over the years that my life shrinks and expands in direct proportion to what kind of day my child is having. And nothing causes my world to contract more drastically than a disastrous outing to the grocery store with Arthur. The vibrant colors and overwhelming choice in the mustard section alone can be overwhelming for me. Imagine how the cereal aisle must be for Arthur.

When Arthur is in sensory overload, confused or frustrated, he becomes dysregulated. This can translate into a screaming, pinching himself or others, bolting toward exits, or knocking over displays. How do other shoppers tell the difference between a child with a disability behaving in a way that is consistent with his or her diagnosis or an out-of-control bratty kid with lazy parents?  They can’t and I experience the disapproving glares and the “tsk-tsk” to prove it.

I’ve abandoned shopping baskets filled with groceries, lurched after propelled carts, apologized for watermelons that served as bowling balls and quietly placed half-eaten candy bars on the conveyor belt. Read full post »