The Autism Blog

Parallel Paths in Adult Transition

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.

 

 

 

 

 

Mindful Monday – Do Overs

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. 

 

The Autism Blogcast – August Edition

News Flash: The August edition of The Autism Blogcast, featuring autism experts Raphael Bernier, PhD and James Mancini, MS, CCC-SLP.

In an effort to keep you up to date on the latest news in research and community happenings, we welcome two of our favorite providers best known as Jim and Raphe, the autism news guys.

These two have too much energy to be contained in written format so our plan is to capture them in 2-5 minute videos that we’ll post the first week of each month. We welcome your questions and comments. Tell us what you think of our dynamic duo!

In this edition of the blogcast, our reporters discuss pros and cons of the McCleary Decision on public education funding, as well as Adults with ASD using state services and employment statistics.

Ask Dr. Emily – Understanding Behavior and Bilingual Children with Autism

Welcome to the July edition of Ask Dr. Emily!

We often receive questions that we want to share with all our readers. To help with this, Dr. Emily Rastall, a clinical psychologist at Seattle Children’s Autism Center, will share insights in a question and answer format.

We welcome you to send us your questions and Dr. Rastall will do her best to answer them each month. Send your questions to theautismblog@seattlechildrens.org.

Q: I am a student and I recently started interning at a child development center. We care for a child who is on the autism spectrum who deliberately burps during his tasks. I’m assuming that this is one of his repetitive, stereotypical behaviors. Is this correct? Would you suggest some ways to reduce or stop the behavior?

A: Thank you for your work and for your question. Before we call this behavior “deliberate,” we will want to determine the function that this behavior is serving. Behaviors can be categorized into serving one or more of the following three purposes: Getting something (like attention or the iPad), avoiding something (like an unpleasant task), and/or self-stimulation (a repetitive, non-functional behavior that serves to stimulate a sensory response). You will also want to consider whether the behavior is a safety risk and/or whether it significantly impacts an individual’s daily functioning. Your intervention (or lack thereof) will vary based on what function the behavior is serving and how impactful it is on the child’s life.

In summary, it sounds like a functional behavior assessment (FBA) is in order. An FBA can help you determine what purpose a behavior is serving, which will determine the intervention you will choose to use. You will want to consult with your team of supervisors regarding how best to go about scheduling an FBA with a trained professional.

Q: I am a father of a child with autism who just turned five. My child’s mother and I do not live in the same home. My daughter speaks only Spanish in her mother’s home. I speak only English with her in my home, and her educators and therapists speak English with her as well. Historically, I have been against her learning Spanish, as I was concerned that her language development would suffer as a result of being bilingual. Although my daughter’s language development has grown dramatically over the last year, I have heard mixed opinions about the impact of being bilingual on language development in children with autism. Given that she is bilingual (whether I like it or not), I wonder if I should make an effort to seek out a bilingual teacher and/or speech therapist. Should I be concerned that my child with autism is being raised bilingual?

A: Thank you for writing in. Rest assured, the research is telling us that there are no ill effects for kids with autism who are exposed to two languages. In fact, the research even points to benefits of being bilingual for children with ASD; for example, bilingual children with ASD have been observed to vocalize more and use gestures more frequently. Seeking out a bilingual speech therapist might help your daughter advance in both languages and could be helpful in coaching you and your daughter’s mother to foster her bilingual growth.

 

Parent Perspective on Transitioning to Adult Care

When you have a child with special needs or complex medical issues, it takes a long time to learn about the care they need, and put together their team of doctors and other providers.

After my daughter got her multiple diagnoses, between ages two and three, it was years before I felt like we had her full team of experts in place. It was really hard work, where I had so much to learn about what my daughter needed – and so did her care team.

We’ve been developing our relationships with these providers over the many years since then. We’re comfortable with each other. I trust them to know and understand my daughter and our family. When we talk about her care, we have a shared understanding of our experience, a shared history of knowing what works for us and what doesn’t. On an even more basic level, I’m familiar with the processes for making appointments, and how billing works. I know where to park and how to navigate the buildings to the clinics we need. I even have the phone numbers of her most frequent providers memorized, simply from having dialed them so often!

My daughter turned 18 last year, and I know that our time with our familiar team is running out. This is a really hard thing to think about, because I don’t want to have to do all this work over again – finding and getting to know and learning to trust and work with a whole new set of providers. What makes this even more complicated is that every clinic or specialist we see seems to have a different approach. One of her specialists has laid out a plan that includes a recommendation of the doctor to switch to, starting next year. Another has told us when we have to leave, but not where to go. Her pediatrician says she’ll keep seeing her “as long as no one tells me I have to stop.” Several clinics have never brought up the subject at all, and I’ve found it comfortable to avoid it myself as long as I can.

And at the same time that we’re figuring out this big transition, my daughter’s going through all kinds of other “transitions to adulthood.” There’s so much to learn and figure out all at once, it seems. It’s scary and confusing for me and for her.

What I’ve come to realize, a little later than I wish I had, is that planning ahead for this change is important. Just like in the early days when she was first diagnosed, it’s going to take some hard work and effort to pull together all the resources she needs now, as an adult, to keep her healthy and thriving. I’ve discovered that there are some helpful tools out there. And we don’t have to do this alone – we can ask her current providers for support and assistance in figuring out how to move forward in the safest, smoothest way possible.

Here are some resource that you might find helpful:

Checklist for Transitioning to Adult Health Care – PE2643

Adolescent Health Transition Project

Autism Speaks Adult Transition Tool Kit

Disabilities, Opportunities, Internetworking and Technology – University of Washington DO-IT Program

DVR

Friendship Adventures – Recreational, Educational, and Leisure Opportunities for Adults with Developmental Disabilities

Giving Your Child an Active Role in His or Her Healthcare

Preparing for Transition From School to Supported Employment

Transition to Adulthood for Youth With Intellectual and Developmental Disabilities