To date, our most popular blog is Why Do Kids with Autism Do That and most of the questions that Dr. Emily gets pertain to the often perplexing behaviors our kids are known for.
This week we bring back this favorite in a two part series. If it prompts a question or two on your child’s behavior, send them our way and we’ll put them in Dr. Emily’s queue!
When my kids were young, my son Justin was quite curious about the many odd mannerisms his sister with autism demonstrated.
We welcomed his questions as well as those from his curious neighborhood friends who we were determined to include in our friendly and oh-so-unconventional home. I did my parental best to offer up ideas as to why she does what she does, and thankfully they didn’t question me or ask to see the evidence behind my hypotheses.
We asked a panel of providers to give us their best answers as to why our kids do what they do. Shelley O’Donnell is an Occupational Therapist specializing in children with autism at Seattle Therapy Services. Jim Mancini is a Speech Language Pathologist and Emily Rastall is a Clinical Psychologist, both at Seattle Children’s Autism Center. Read full post »
When my daughter was diagnosed in 1999, I read every book written about autism. That wasn’t difficult to do back then but today it’s a different story. There are so many books on the subject that I don’t think I’d know where to begin if I got the diagnosis today.
While I don’t feel the need to read everything autism these days, I thoroughly enjoyed and appreciated this book and wanted to share a bit of it with you.
First, the authors’ personal connection to autism: Caren Zucker’s oldest son has autism as does John Donvan’s brother-in-law. They both are award-winning news journalists who obviously did their homework in researching the history of what is now the most common developmental disability.
Their history starts in the 1930s with Donald Triplett, the man from Mississippi who was “Case Number 1”, the first diagnosed with autism by child psychiatrist, Leo Kanner. While chock-full of historical facts and figures, it is the stories used to chronicle autism’s history that grabs attention and hearts. It reads like a page-turning novel even though we know the story and that there is no surprise happily-ever-after ending.
At times it was difficult to read about the early days of institutionalization and punishment as treatment and of course, the theories that blamed “refrigerator mothers” for causing autism. Equally difficult is the realization of how glacially slow science has been in answering the same questions Mr. Triplett’s parents asked: what caused this and how do we best help our child?
The best aspect, by far, of In a Different Key is the validation of the Herculean efforts of parents to advocate for the needs and rights of their children. Theirs is a civil rights story that humbles the fiercest of advocates today, considering where they started and how much they accomplished. I turned the last page feeling a debt of gratitude to those who came before us, and a realization that, with each generation, we carry and then pass the torch.
As a veteran parent of a child with autism, I thought I was prepared to handle just about anything as we approached her eighteenth birthday.
I had years of experience under my belt, locating, navigating, and accessing services for her and many others in my work.
I had my adult transition checklist: Apply for guardianship. Check. Apply for SSI. Check. Set up special needs trust account. Check. Check in with DDA case manager. Check. Look into residential housing options. Check. Everything was going relatively smoothly, which means I found my way through the mazes with a little more confidence and a little less stress than in years past. I had hit my stride, strutting my parental best-self, and moving forward.
And then the unexpected happened.
I was standing before a court commissioner at my daughter’s guardianship hearing. She was talking but my focus kept waxing and waning as I began to experience an out-of-body sensation. I was physically present but my brain felt as if it were up on the ceiling observing from above.
She was praising the fine job I’d done caring for Carrie the past 18 years. “Well, of course!” I thought. “I’m her mother!” Then she sternly looked at me and told me that from this day forward, in the eyes of the law, I was no longer her mother. I was her legal guardian – held accountable to the court. There would be records to keep and reports to file. My mind was playing tricks on me again. Of course I would be accountable. I’m her mother!
On my way back to the car, I tripped, ripping my pants and badly scraping my knee. I sat in the car, knee stinging and mind numb, and tried to make sense of what had just occurred. Why was I so unnerved?
Was it the finality of missed milestones or comparing her future as an adult to peers or her brother? No. I’ve never been one to compare her to others. Was I afraid I wouldn’t live up to the court’s expectations of me as her guardian? Nope. Not that.
This is what I came to: Her entire life, I’ve been her protector, her advocate, her teacher, her therapist, her supporter … her mother.
And then one morning in court, I was not.
Nothing could have prepared me for that. This was the beginning of a shift that I realized was not just for her but for me as well.
Adult transition has proved to be as challenging as getting her diagnosis and initiating all the supports and services she has needed. It’s a lot of work and I’m 20 sleep-deprived years older than I was then.
Just as I didn’t want her diagnosis 18 years ago and would have liked to pretend it wasn’t happening, I don’t want to transition from her trusted pediatric providers – but I can’t pretend.
So, dear parents and pediatric providers, here’s my message to you as you approach adult transition for your child, your patient.
- Don’t put off the inevitable until the last minute. Find out what the transition policy is for each of your child’s providers. It may not be the same for each department or specialty.
- Perhaps you don’t know what resources there are for young adults in each specialty. How about exploring this together?
- Dear provider, maybe you don’t feel it’s your job to have this talk with parents – but if not you, then who? Who better than the person we’ve trusted with our child for almost their entire life?
- It’s likely that we’re both feeling anxious about this and wish we didn’t have to part ways. We’ve been through a lot together, problem-solving many challenges, and this is no different.
- Partner together to make this less stressful and a better outcome for all.
Have you ever thought back to a difficult time in your life and wished you could go back and do it over? That’s likely because, as Dr. Rick Hanson tells us, our brains tend to be like Velcro for the negative and like Teflon for the positive.
How we remember an experience (and how we perceive an unfolding experience) has much to do with what we choose to pay attention to.
Before you say yes to that do-over, try this exercise:
Think of one of the biggest challenges you’ve had in your life, one that was so difficult you thought you’d never get through it. Now ask yourself this: Did anything good come of it? Did I learn anything about myself or life? Am I stronger, wiser, more resilient? Did this challenge lead in a direction I might not have otherwise taken?
In paying attention to possible positive aspects of the experience, you are shifting your attention, reframing the experience. That doesn’t mean ignoring the difficulty or pain. It simply means broadening your view to include any positives that may have come of it. Keeping in mind that adversity is our common humanity, doing this helps keep perspective.
Try broadening your view to current challenges to include any possible positives, keeping in mind those past experiences.
The glass is, after all, both half-full AND half-empty.