Archive for 2013

What I Want My Child’s Providers to Know

Last week we talked about some of the things parents reported as being not helpful. This week we thought it would be useful, given how many people our in our children’s lives, to have a way to share some of the most important information about them. Below is a template that might be helpful.

A Letter to My Child’s Provider….

(Today’s Date)

Dear (Doctor, Teacher, Therapist),

I’m writing to you because I know you are busy, work with many children, and don’t have time to read volumes of specific information about my child. And whether you are new to my child or have worked with (him/her) for years, I bet you will find in this note something you didn’t know! Read full post »

Tips from Parents to Providers on Working with Kids with Autism

Everything You Always Wanted to Ask Your Patient’s Parents but were Afraid to…

I’m always impressed with the great questions people ask when I’m doing a talk about the impact autism has on families. Whether it is new med students or pediatric residents in dentistry, the genuine interest and desire to learn gives me hope that these future providers of services to our kids will do their best to make things a bit easier for families.

I usually tell those in attendance that they should feel free to ask me anything and everything, as my skin is pretty thick after all these years. I was recently asked this insightful question by a resident in emergency medicine: Read full post »

Autism and GI Issues

Recently we received a question from one of our readers about a large study regarding children with autism and Gastrointestinal (GI) Issues. Please see what our Dr. Charles Cowan had to say:

Thanks for your post pointing out this most interesting and important recent study. This UC Davis/MIND Institute study is the largest study to date on gastrointestinal (GI) issues in children with Autism Spectrum Disorders (ASD). For those of you who haven’t heard of this study or read it, in brief summary the authors used data from CHARGE (CHildhood Autism Risks from Genetic and the Environment) database. This is a very large study which enrolled 1,513 participants from 2003-2011. Most participants completed a questionnaire about GI symptoms, such as diarrhea, constipation, abdominal pain, and food intolerance to compare the prevalence of these symptoms between children diagnosed with ASD, non-autism Developmental Delay (non-ASD DD) and Typical Development (TD). Read full post »

Autism and Time for a Change of Holiday Thinking

snowman in october

It ought to be a crime

A neighbor down the street from us puts her Christmas decorations up days after Halloween. It’s strange to see her lit-up Santa with a pumpkin at his feet. Seeing holiday trees for sale last week made me feel a bit annoyed that we are rushing so far ahead of ourselves. We’ve barely closed the door on the last trick-or-treaters and have yet to give thanks in November. What’s the big hurry? Can’t we enjoy one holiday without immediately diving into the next?

Guilty as charged

While no one could ever accuse me of getting ahead of myself in the game of holiday decorating or shopping, I confess to sometimes wanting to fast-forward through them. After all these years of accepting and reframing what they mean in the context of living with autism, it’s still difficult not to feel a small pang of disappointment for all the Read full post »

Autism and Parent Identity

mirrorMy colleague and fellow mom Katrina recently sent me an article in the NY Times written by a woman facing an empty nest as her last child was about to graduate from college. She wrestled with figuring out whom she would be moving forward when so much of her perception of who she is had been based on her role as mother. We certainly could relate to feeling a singular identity however we did wonder aloud if we would ever feel like empty-nesters given that we have children with autism who will require oversight for life.

It also reminded me of an exercise I had hoped to do one day with parents of children with autism regarding their self-identity. I called it the I Am exercise and here is how it started . . . Read full post »

Wisdom Tooth Surgery and My Child with Autism

Waiting

We’re sitting in the waiting area amongst other parents whose children are having day surgery. Instead of my blue staff badge, today I have on the orange visitor badge. Today, I am all parent.

I have tried not to think about this day for years– ever since an X-ray confirmed that she did indeed have all four of those pesky wisdom teeth and that they’d eventually need to come out. Why do we even have them anymore? Haven’t we evolved further than this?

We have been through many things with her that have caused us high anxiety- so this is not new- but it is never easy. It is however easier because we have learned to trust. To trust the people in whose hands we place our precious child, to trust the process that has been successful with many before us, to trust ourselves that we have prepared as best we can, and to trust her that she will do her part as best she can.  Read full post »

Autism- Disability or Cultural Identity?

There seems to be growing discussion about how autism is perceived – as a disability or as an identity – or perhaps both. Seattle Children’s Autism Center family therapist, Lynn Vigo,was recently interviewed for an article on the topic in Seattle Magazine. Here’s more of Lynn’s thoughts on the subject:

My experience with autism

As a parent of a teen with autism and also a family therapist at Seattle Children’s Autism Center, I am keenly aware of how very broad the presentation of what we call “autism” is. There is no such thing as “one size fits all”. We often say that, “if you’ve met one person with autism . . .  you’ve met one person with autism.” Read full post »

Holiday Travel and Autism

airplaneWhether you are travelling near or far this holiday season, here are some helpful tips to make travelling with your child with autism successful from Seattle Children’s Autism Center behavioral specialist, Ron Thomson.

Gather information and organize documentation:

• Emergency fact sheet: This is a document that is carried in a secure spot, often with other travel documents. A typical format is an 8.5″ x 11″ piece of paper (perfect for slipping into a clear sheet protector) that contains essential information. Common information to be included is name, contact information, diagnosis, pertinent health Read full post »

Emergency Preparedness & Your Child with Autism

Street ClosedThere are a number of scenarios that my brain automatically refuses to consider and if I was the superstitious type, I’d believe that I’m about to jinx things by now naming some of them. Of course, they all have to do with my child with severe autism and the scariest ones have to do with situations that arise out of nowhere, with little time to respond, such as an earthquake or other natural disaster.

Life has a way of giving us reminders, both big and small about the wisdom of planning ahead for such things. Hurricane Katrina’s effect on my family in New Orleans was a big one. With their house under eight feet of water, they found themselves displaced for months and while it was hard on everyone, it was particularly so for my nephew with special needs. Read full post »

Autism and Tips on Hiring In-Home Behavior Staff

In-home therapistSo you’ve gotten through the diagnostic evaluation and survived. You’ve been given your resource guide, your First 100 Days kit, and an abundance of online support and education resources. You may have been told that Applied Behavior Analysis (ABA) is one of the few evidence-based treatments for autism and that Medicaid and other insurance companies are now covering ABA for children with autism, so consider starting a home program to augment the services received in school.

So where does a parent begin?

My experience as a parent of a child who receives ABA services is that it isn’t as easy as making a phone call or two. There’s a learning curve in understanding what this therapy is, how it might benefit your child, how to access it, and how to live with it. Times have changed a great deal in the thirteen years since my son was diagnosed at age 3. At that time there was no insurance coverage for ABA or any other kind of therapy in the home, providers were scarce, and it was hard to know how qualified they were. Read full post »