Young Adult

All Articles in the Category ‘Young Adult’

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

 

 

Differentiating with an Adult Child with Autism

 For most parents and most kids, adolescence is a time of great emotional development and differentiation. They don’t want to be around us, and at some point in the life of a teen in your house, you’re pretty ready for them to leave, too. 

 

It happened like clockwork with my typically developing daughter and me; first she pulled away, then we fought. Then I got so tired of her mess and attitude that I didn’t even cry (much) when she went to college in Vermont. Now that she’s 26 we’re very close, and yet we’ve managed to forge our very own, very separate lives.

Things have always been different for Caleb. My son is four years younger than his sister, and has a significant intellectual disability, epilepsy, autism, and is deaf. Differentiation with him has been all on me.  When my daughter was fourteen, she started the battle that is growing up.  She became embarrassed by my clothes and the things I said in front of her friends and let me know all about it. She defied me and talked back.  She was identifying herself as a person who was not like me – a step so important to becoming an adult.

Caleb has never cared what I wear, and at 22, has never once said no to a chance to hang out with me. I’m his favorite person all day every day.  If I would stay home from work and cook pancakes for him, he would never choose to leave my side. 

And this is great. It’s wonderful to be someone’s favorite person ever. For twenty-two years and counting.  All day every day.

Also, it has become pretty exhausting.

When Caleb was ten, I had to insist he finally potty-train. He would sit on the toilet for hours with me on the side of the tub feeding him tootsie rolls. It took about a month and not a few glycerin suppositories, but we did it.  He’s completely independent with toileting now!  It turns out, differentiation is going about the same way so far: slow, deliberate, and very late.

Caleb was 17 when we finally couldn’t care for him at home anymore and he moved into a group home. You’d think that would be a step in the right direction, but you’d be wrong.  Every weekend, I brought him home, catered to his whims, bathed him, and tucked him in at night.  Then every Sunday I would return him, showered and shiny, to his house.  It wasn’t until Caleb was 21 that I developed the emotional separation I needed to help him begin to differentiate.  It started with skipping a weekend.  Then, instead of bringing him home, I started visiting him at his house.  Sometimes, I would only stay long enough to take him to lunch or go to the park. 

There are many reasons this separation makes me incredibly nervous: the staff at the group home need a lot more training than they get, and I sometimes seem to be the only one providing it.  Caleb can’t use a phone and won’t pay attention to me on Skype, so there’s no contact with him if I don’t go visit.  I often arrive at his house to find that no one has made him shave in a week, and that his laundry is mixed with his roommate’s and the clothes he’s wearing do not fit. He has medical issues, and I’m not sure staff understands the right things to say to doctors when they take him to appointments.  I’m not sure he will be cared for adequately if I am not intimately involved.

It’s a fuzzy line we walk. I hover somewhere between over-involving myself to the point of abandoning all hope of either of us being an independent adult, and neglecting to advocate for this vulnerable person who I love. How do you avoid codependence with a person whose needs are nearly infantile?  How do you stay mentally healthy when you spend decades making sure someone else’s basic needs are met, regardless of whether yours are?  How do we grow up, Caleb and I, into an adult relationship?

Caleb recently moved into a new group home. Every Sunday I visit, help him shower and shave, and separate his laundry.  I take him to lunch, to a movie, and shopping for his favorite snacks.  I tell myself that this will change soon.  That someday, he will be independent of me, even if he’s not independent of help.  He has to be. I am mortal and very likely to die before he does.  That’s not the only reason to differentiate, but it looms large for parents of very disabled people.  It’s not healthy for them or us to be completely enmeshed forever.  While shaving my adult son’s face and brushing his teeth last weekend, I thought about how we’re doing with this growing up thing.  I guess it’s still a work in progress.

Your Voice Matters: Life with Autism

For years I have worked tirelessly to give my voice to autism, both through training providers about family-centered care and training parents to become advocates for themselves and their children.  I have always tried to capture my son Josh’s story accurately, and have struggled with feeling authentic.  Do I share my story or his? 

 

When Josh became a teenager he no longer wanted me to share his story, so I worked at refining mine. When I was unable to do that, I stepped away from speaking publically about autism. 

Our journey has been quite an adventure!  Many ups and downs and everything in between.

In January Josh decided to make a video about his struggles with autism.  He presented his story to the entire student body at a Martin Luther King assembly at his high school, Nathan Hale.  His voice speaks volumes more than I ever could. 

Thank you, Josh.  I’m so proud of you!   Keep talking…your voice matters!             

 

Parallel Paths: Our Life with Autism

Ten years ago, as a new employee in the department of Psychiatry and Behavioral Medicine, I was asked by a colleague to present with her to a group of trainees.

She was to cover diagnostic evaluations and I was tasked with discussing the impact of autism on families. How on earth would I manage to accurately capture the daily challenges that often are not observed in brief clinic visits?

My hope was to help them to “get it” meaning to see just how difficult it was.Short of suggesting we hold the session in my home for a first-hand look, I decided to make a video I called, “A Day in the Life with Autism” 24 minutes representing 24 hours in our unconventional life. It was well-received and since then I have been asked to share it with many different providers and students at Seattle Children’s and the University of Washington.

So much has changed in the past decade that it felt time for an update. This time though, I wanted to capture the bigger picture of our life and the lessons learned not only for providers but for parents who walk this path too.

Whose CHOICE is it Anyway?

dandelionI’m so confused.

As the parent of someone with autism, being confused is not new to me. Autism is confounding for the best and brightest among us. Just ask the top researchers and providers in the field. And with few solid answers, questions abound.

Old questions persist about what causes autism and what the best-fitting treatment is for each child. It seems we’ve moved past some of the early controversy about what causes autism and have separated the “wheat from the chaff” when it comes to evidence-based treatment. With advances in genetics, we’re getting closer to being able to target treatment to a child’s unique profile.

With broadening of diagnostic criteria to include those “on the milder end of the spectrum” came new questions about whether autism is a disability or a personality difference. Some self-advocates declared themselves “autistics” and turned people-first language upside down while others voiced that their Read full post »