I remember telling Dr. Cowan when he gave us the diagnosis that it felt as if we’d been inducted into a club to which we did not want to belong. I’d have given my right arm not to be told she had a serious neuro-developmental disorder. That was 18 years ago when we talked about “cure” in the small circle of parents and providers living with and serving children with autism.
Seattle Children’s offered no services other than diagnostic evaluation and did not yet endorse ABA. There were only a handful of ABA providers in the state and insurance didn’t’ cover it so parents took out second mortgages, held fundraisers, went into debt Read full post »
We’re all so busy that it’s easy to move through our day without really noticing those around us.
We walk down the street, phones in hand, spending more and more time in a virtual world. We rush from one appointment to the next, barely acknowledging each other. It’s easy to come across as aloof or even a bit grumpy as we hide out and hang out behind our screens.
Here’s a quick and easy mindfulness practice to help us feel more connected in the real world:
Set an intention today to connect with someone in person. No phones or computers allowed! As you walk down the hall, stop and say hello to someone. As you walk down the street, smile at a stranger. As you approach a door, hold it open for the person behind you.
That’s it. Give it a try and you might find that your day seems just a bit better. And who doesn’t need that?
If you are a parent whose child was diagnosed in the 1990’s, you know that there was not much in the way of supports and services for our families back then. Little was understood about ASD and treating challenging behaviors, Applied Behavior Analysis (ABA) was not widely endorsed much less covered by insurance and it was almost impossible to find skilled providers to serve us. Lucky for us that at that time, Gene McConnachie had recently completed his graduate work under Dr. Ted Carr, a pioneer in the field of Positive Behavior Support (PBS).
Gene began his work in Seattle with the Developmental Disabilities Administration (DDA) in 1993 as a clinical psychologist at two of our state’s Residential Habilitation Centers (RHC), Rainer and Fircrest. In 1996, he moved into Field Services, providing direct service to clients and families in their homes and for the past two decades, Gene has been a significant figure supporting DDA case managers, consulting with parents about behavior supports and how to navigate the DDA system, building local resources and partnerships to enhance supports to prevent clients from needing psychiatric or DDA institutional placements, teaching Positive Behavior Support to our community partners, and providing quality assurance for these services and supports.
In Gene’s twenty years at DDA, waiver services expanded to include the Children’s Intensive In-Home Behavioral Support (CIIBS) and Individual and Family Support (IFS) waivers and for fifteen years Gene’s Behavioral Support Team (BeST) program is still going strong. He trained upwards of 1000 residential support and other staff on PBS implementation within the context of DDA policies.
Gene has also played a major role in our region through his board participation in the annual Washington State Co-occurring Disorders Conference, ensuring that DDA clients and stakeholders received relevant training at a conference that would otherwise have been more exclusively focused on co-occurring mental health and substance use disorders. In addition, Gene served on the Seattle Public Schools Special Education Advisory and Advocacy Council and collaborated closely with the King County Developmental Disabilities Division. Nationally, Gene has served on the leadership team of the Home and Community PBS Network and on the Board of Directors of the Association for Positive Behavior Supports.
Today, as many of our kids diagnosed in the 1990’s are transitioning into adulthood, Gene is retiring from DDA. I asked him if he had one wish for families served by DDA, what it would be and he said this:
“That DDA services are preventive instead of reactive so that we could assist families to navigate the many challenges to having a healthy family life from birth on, and prevent the trauma, turmoil, and much of the burn-out our parents experience raising a child with IDD. We provide mostly reactive services after much client and family anguish, stress and trauma have already worn families down.”
To Gene McConnachie, our friend, colleague, advocate, and ally, we owe you a world of gratitude and wish you all the best! Till we meet again . . .
While retiring from DDA, Dr. McConnachie is semi-retiring from work! He will continue to serve families living with ASD and ID in his private practice. You can find more here:
Have you ever thought about the voice in your head? You know the one I’m talking about. The “I”, “Me” voice that seems in constant chatter to narrate the story of our lives. This is the voice of the 50,000 thoughts per day that stream through our consciousness.
Do you listen to this voice? Believe that all it tells you is true? Are you aware of the pauses or spaces between the thoughts, when the voice quiets to a background hum instead of the front-and-center megaphone we’re used to? If you aren’t tuned in to those fleeting in-between moments, then you might try a mindfulness strategy or two to help. Simply taking a few deep breaths to slow down in mind and body or repeating a mantra (simple word or sound) to do the same can help us tune in to these healthy, healing pauses where the chatter stops and we experience the present moment, right here right now. We experience the essence of whom we are – the one who observes the voice.
Going to the Emergency Department (ED) with any child is unnerving. Taking a child with Autism Spectrum Disorder (ASD) is even more so with all the complications that autism brings. Waiting is hard. Explaining baseline behavior is too.
There are many unknowns with kids with ASD such as unusual reactions to medications and elevated behavioral responses to procedures as simple as blood pressure and temperature. In addition, parents face the scrutiny of everyone within earshot of our kids who frequently are loud and draw lots of attention. We feel the stares and we sense the judgment. We’ve been here before in the grocery store, the restaurant, and yes, even at Seattle Children’s Hospital as we wait along with others for services.
Will your child ever need to go to the Emergency Department? Hopefully not but you might be surprised to learn how common a trip to the ED is for ALL kids, including ours. Given that, is it possible to be prepared ahead of time? For answers, we went straight to the source with Seattle Children’s Emergency Department staff. We have also included a handy glossary of terms that you may encounter in an ED visit. If a provider uses a term you are unfamiliar with, don’t hesitate to ask for an explanation!
• How many children and adolescents with ASD do you see in the ED? • What are some of the concerns that families bring to the ED?
• What are some of the common challenges that occur for patients and parents in the ED? • What are some of the common challenges that occur in the ED for providers serving patients with ASD?
• What can parents do to prepare before their child has reason to need a visit to the ED? • Upon arrival in the ED, what can parents do to lessen the stress for all?
• What has been done at Seattle Children’s to lessen the stress for patients and families in the ED? • What do you want patients with ASD and their parents to know if they need to see you in the ED?
Glossary of Terms You Might Hear in the ED
Attending: a physician/medical doctor who is in charge of your care and supervises trainees such as residents and fellows.
Resident: a physician/medical doctor who practices medicine in a hospital or clinic under the supervision of an attending physician.
Fellow: a physician/medical doctor who has completed residency and has chosen additional training in a specialty or subspecialty and practices under the supervision of an attending physician.
Labs: usually refers to a blood draw, urine or stool sample for diagnostic testing
Triage: the process of determining the priority of patients’ treatments based on the severity of their condition
Medication reconciliation: the process of updating the record of current medications
Imaging/Scans: refers to diagnostic procedures such as MRI, CT, X-ray
NPO: nil per os – Latin term meaning nothing by mouth (food or liquids)
PRN: pro re nata – Latin term meaning as needed or when necessary
• If you are concerned that your child will resist doing something in the standard way, ask if it is possible to do it a different way. I recall an ED visit with my child in which an X-ray was needed. She would not lie down for it so we tried it standing up and it worked. This won’t be possible in every single case but it’s always worth asking.
• Providers in the ED are always busy and won’t always have time to check your child’s chart if they are patients at Seattle Children’s. You can help by having answers ready to some key questions. Take a look at this card we use at our Autism Center.
We hope that your child never is in need of an emergency department visit. It’s always good to be prepared, so just in case bookmark this blog!
Seattle Children's complies with applicable federal and other civil rights laws and does not discriminate, exclude people or treat them differently based on race, color, religion (creed), sex, gender identity or expression, sexual orientation, national origin (ancestry), age, disability, or any other status protected by applicable federal, state or local law. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.