Young Adult

We hear it too often- what happens when our kids become adults?

Who will make sure their needs are met? How will families navigate this transition?  Where will funding come from?  Where do we go from here?

Recognizing the growing need for resources, support and direction for families with young adults on the autism spectrum, John and Traci Schneider have yet again paved the way to provide a glimmer of hope for families navigating this transition into adulthood.

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People with social, intellectual and behavioral differences are making positive changes in their own lives and in the lives of others. From education to policy to employment, the future is brighter because those with autism and other abilities are speaking out, stepping up and changing the way our society operates.  Read full post »

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.

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

 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.