That’s Unexpected! 

Games We Play

 

I don’t know if it’s because of autism, cognitive impairment, or both, but Ryan finds it difficult to play traditional games (like board games or card games).  Somehow, though, we’ve managed to create a few free-form verbal games we play together frequently.  One was inspired by a speech and socializing activity while he was still in school, and two others Ryan created himself.

The one inspired by his class at school is called “That’s Unexpected!”  Not only do we play it as a game, we use it when things have taken an unexpected turn and we’re trying to ward off a nasty reaction.  For example, we went to the optician’s office to pick up Ryan’s new glasses one Sunday morning, not realizing the office didn’t open until noon on Sundays.  A remark that “That’s unexpected!” and a laugh from one of us brightened up the whole situation when it could easily have ended in a meltdown.

I’m known for my somewhat sarcastic humor, which Ryan doesn’t always “get,” so when I’ve made a remark and he looks puzzled, we use “That’s unexpected!” to get through the moment.  Then I explain what I meant, hoping to expand his awareness, his sense of humor, and his use of language.  While his use of language is pretty good, it can always use improvement.

Probably the oldest game we play, “Drum, Drum, Drum,” is one that Ryan created himself with his former emotional support dog, Pooh Bear.  It always starts out by Ryan saying, “Drum, drum, drum, Pooh Bear’s not a drum!”  Then we agree that that’s true.  Next comes a variety of other sounds, always in a group of three, followed by “Pooh Bear’s not a . . . “  Like, “Cut, cut, cut – Pooh Bear’s not a piece of paper!” 

We’ve started inserting our own things that Pooh Bear is not – like “Pooh Bear’s not a tympani” – followed by “That’s unexpected,” thus joining the two games.  Ryan wasn’t sure about us changing up the usual replies, but he now looks forward to what we’ll say next.  It’s another way to increase his socialization and use of language, and we try to expand his vocabulary by explaining any unfamiliar terms (like tympani).

Another game Ryan created has to be played while driving around.  Ryan loves dogs with a passion, and he has an eagle eye for spotting them on sidewalks around town while I’m focusing on driving in Phoenix’s notoriously heavy traffic.  I don’t spot most of the dogs, but I can still play the game.  “There’s a black dog!” Ryan will say, pointing to the animal in question, followed by, “Pooh Bear’s not a black dog.”  I agree, and wait for the next dog to come along.  Pooh Bear had to be euthanized about 5 months ago, and Ryan is just now starting to say, “Snowball’s not a . . . “ but he still usually plays the game with Pooh Bear’s name.  I don’t think he’s quite ready to let go of his old friend.

Games like these make for fun moments and fun little rituals.  We don’t always play “Drum, Drum, Drum” after dinner, but we frequently do.  We always play “Pooh Bear’s not a . . . “ when we’re in the car.  It’s surprising how many dogs Ryan can spot, even when I’m driving on the freeway! 

 

What games do you play with your adult child?  Are they “made up” games, like ours, or are they more “typical” games?  I look forward to hearing about what you do – I’m always on the lookout for new ideas!

 

Close, but Not Too Close: 

Working with Personal Service Providers

I admit it – I have trouble managing the relationship between personal service providers and my family.  By “personal service providers,” I mean habilitation workers, respite workers, attendant care providers, anyone who provides care for your adult child with special needs on a regular (or irregular) basis. 

People in positions like these are generally marvelous people, giving a lot of care for not very much money.  (Either that or they suck.)  I’ve really liked most of the care providers we’ve had over the years.  Some of them become like part of the family – and therein lies my problem.

How close is too close?

Too close is when your young respite provider takes nude photos of herself in your bathroom and manipulates them on your home computer – and forgets to delete them when she quits abruptly to take a job as an exotic dancer while I was out of state and not expected back for two more weeks.

Too close is when your respite and habilitation provider brings her own teenager along but brings nothing to occupy the child’s time while the provider works with my child.  And expects me to feed both of them dinner.  During respite time, when I’m supposed to be resting in order to deal with my own health issues.  The day she bought me new dishes for the kitchen was the last straw.  I liked her a lot, and she was good with my sons, but in this case, too close was too much. 

She was also perpetually late and routinely underestimated how far away places were (and therefore, how long it took to drive there), a sure trigger for one of Ryan’s epic meltdowns.  During her interview, she said she lived “right around the corner.”  Yeah, right around the corner – and another 25 miles down the road, as I discovered a few months later!

Too close is when your older respite provider develops pneumonia but won’t stop trying to provide care despite the fact that he should have been at home, in bed, with his OWN care provider.

Granted, part of the problem is mine for not establishing and enforcing firm boundary lines.  These three individuals were all very good with my sons, which made me want to bend over backward to keep them.  When you find “good help,” you want to keep them around as long as possible.  I never thought hiring and firing staff members would be in my job description as “mom,” but things change when you’re parenting kids with special needs. 

Currently, Wayne is providing Ryan’s habilitation services which include working on improving his personal hygiene, learning to clean up the kitchen and bathroom after himself, and learning to do his own laundry.  Our daughter Michelle provides respite care when she can, but that hasn’t happened much lately due to her being overscheduled for the past several months at her day job.

I’m actually a bit afraid to try getting outside help again.  It’s a lot of work to manage workers for your child, and most days, I just don’t have the energy to be mom and supervisor.  It’s just easier to do it ourselves right now.

 

Based on your experiences, what advice would you give other parents, guardians, and caregivers of adult children with special needs (and me!) regarding habilitation, respite, and other service providers?

Hot off the Press – Get Your Book Review Here!

If you are concerned about your child’s future and the transition out of your home, this may be the book you’re looking for.  As the author says, “Transition will happen, with or without your assistance.”  Here is concrete advice for one of the biggest changes in your and your child’s life.

Parenting an Adult with Disabilities or Special Needs:  Everything You Need to Know to Plan for, and Protect, Your Child’s Future by Peggy Lou Morgan.  Published 2009 by AMACOM.

224 pages, includes index and appendices.

Amazon Rating – 4 out of 5.  My rating – 4 out of 5.

Overview:  This book is about the realities and practicalities of the transition of the adult child with special needs to a setting other than the family home.  Whether this transition comes soon after school ends or not until the parents become unable to adequately care for their child anymore, there are things that need to be addressed and accomplished to make that transition as smooth as possible. 

Summary:  Parental involvement is vital to help ensure the future happiness of the child.  According to the author, “the longer an adult child remains in the nest, the more difficult will be her transition to an adult situation . . . plan early.”  All parents of people with special needs face a nagging question:  what will happen to my child when I’m gone?  The author believes that “loneliness is the only real disability.”  There are many good suggestions within the book’s pages regarding making story books of the person’s life and referring to them often, as these can help tell the person’s story in the absence, temporary or permanent, to care providers.  Naturally, you will want to explore all living options available to your child, and the author recommends drafting a transitional plan where you state your desires for your child’s future.  She goes on to discuss goal setting as a way of accomplishing the transitional plan during what may be a long wait for the transition to be possible.  A lot of detail is given regarding wills, estate planning, and working with an attorney.  The book continues with making the actual transition, a parent’s responsibilities after the transition, and ends with a plea to continue to advocate for the civil rights of people with disabilities and special needs.  The Appendices are very detailed and helpful, and the book has an index, making it easy to find what you’re looking for. 

 

Reactions:  I found the title of the book misleading, expecting it to provide advice on actually hands-on parenting adults with special needs and disabilities.  Instead, I found an author who undeniably knows her stuff but who promotes an early transition into a non-family residential setting, a concept I don’t necessarily agree with.  The author also refers to a previous book of hers (Parenting Your Complex Child, published in 2006 by AMACOM) often enough that it would probably be wise to get your hands on a copy of that, too. 

With that said, I found the book to be helpful in several ways, including providing some legal knowledge I’ve been operating without.  After discussing it with my husband, Wayne, we will put together a transitional plan and some of the other things the author talked about, despite the fact that our planned transition is to Ryan’s sister Michelle’s home, not a residential setting like the group home where Andrew lives, and that we’re not planning on it happening for quite a few years yet.  Still, though we’re not old, we aren’t getting any younger, so it’s better to be prepared in advance rather than left short from a lack of preparedness. 

 

Links provided by the author: 

http://www.peggyloumorgan.com

http://www.autism-society.org

http://www.disabilityinfo.gov

http://www.ssa.gov

http://www.ucp.org

 

 

 

 

 

 

Detour Company Theatre – a Theatre Troupe for Adults with Special Needs

 For several years now, Andrew has participated in a group called Detour Company Theatre.  It is a unique program that started in 2000 and is dedicated to serving the needs of adults with special needs like cognitive impairment, cerebral palsy, blindness, autism, and on and on.  Andrew has loved it, and we have seen a great deal of growth in his self-confidence over the years as a result of this program. 

The company produces two shows per year.  It takes about 16 weeks to stage one show, and usually summers are “off” because of the heat and family commitments of the actors and coaches.  Recent shows have included South Pacific, Fiddler on the Roof, The Little Mermaid, Oklahoma, Into the Woods, Mary Poppins, Hairspray, and many others.  The lines are sometimes simplified to make them easier to say, but the concepts remain.  Themes of exclusion, working to make a dream come true, and prejudice have been explored by this company to the benefit of the actors, coaches, and the community at large.

Thanks to grants, tickets are free, which means even my large family can attend with no problem.  The group sells show t-shirts and advertising space in the show programs, in addition to seeking grants, to keep themselves self-supporting. 

Opportunities in the performing arts for adults with special needs are hard to come by, and we are very grateful that Detour Company Theatre exists and has made a home for Andrew.  He even met his girlfriend through the company – she’s also an actor.  They have played couples on stage on several occasions.

For more information about Detour Company Theatre specifically, head on over to http://www.dctaz.org/. 

 

What performing arts programs are available in your area?  Does your adult child participate?  How has it affected him/her?  How does your child creatively express him or her self?

 

What Happens When Autism Grows Up?

I found an article on Facebook a couple of weeks ago about the hardships faced by adults with autism and wanted to share the gist of it with you.  I didn’t realize at the time that it was published by one of my hometown news agencies, www.AZCentral.com.  It is entitled, “We love autistic children – until they grow up.”

And isn’t that the truth out there in the larger community?  Thanks in no small part to the media, we see CHILDREN with autism portrayed as sweet, shy, and undeniably cute, as they certainly can be.  I think this is also in part due to the sheer numbers of children with autism.  Often when I’m out in the community with Ryan, the subject will come up with a stranger, and they are familiar with at least the term “autism” and generally know or are related to a family affected by it.  It has almost become a norm of 21^st century society.

Thanks also to the hard work of parents starting back in the 1970s, children with autism have the right to an education, and thereby a right to a future where they are living as independently as possible and making as many of their own choices as possible.

But what happens when they grow up?  The article uses the term, “invisible.”  They are certainly not invisible, but because of the lack of support in training programs and housing opportunities, adults with autism don’t get out a lot.  Many of them live at home with parents who are always growing older.  Some live in group homes where outings in the community may exist, but for whom choices may be limited (what to eat, when to eat, etc.)

And adults with autism DO grow up.  They lose that childhood glow, that heart-warming bundle of potential, and instead become “bigger, stronger, hairier, paunchier, and sexually mature.”  They also lose much of the funding that promised fulfillment to some of that potential when they were children.

Between now and 2026 (that’s only 10 years from now!), about 500,000 kids with autism will become adults with autism.  That’s half a million, folks.  That’s a lot! 

As parents, guardians, and caregivers of those with autism, we need to start now in our effort to make sure their futures remain filled with potential.  Ryan is very fortunate – he is enrolled in a wonderful day treatment program for adults with a variety of disabilities, he is known by name to many of the residents in our apartment complex (especially the ones with dogs, but that’s a story for another day!), and he has a loving sister ready and waiting to take over his guardianship when we’re no longer able to provide a good life for him.

Most adults with autism won’t be that blessed.  As a community, we need to see that they are.

 

The Sad Truth about ABA

Almost a year ago, when he was 23, we were finally able to get an ABA assessment and plan for Ryan.  There were very few professionals providing ABA services in our area when he was younger.  I’m sorry that we had to wait so long, especially given the changes I’ve seen in Ryan’s behavior since we started.

 What is ABA?

ABA stands for applied behavior analysis.  It is based on the principle that if a behavior is reinforced, it is more likely to be repeated.  ABA focuses on positive reinforcement for positive behavior or demonstration of skill that is being taught (reading, for example).  In our particular situation, our goal is to get Ryan to decrease the frequency and severity of his meltdowns.  These meltdowns are the only thing keeping him from progressing from the pre-vocational program at his day treatment program into the full vocational program, in which he can earn his own money, something that he would love to be able to do.  Therefore, it’s important that we and his program do whatever we can to reduce and hopefully extinguish the meltdowns.

We use a system in which Ryan earns points for using the computer appropriately and for leaving it when turn is over or he’s directed to do so for whatever reason.  This has historically been the biggest and most consistent trigger for his meltdown behaviors.  A 24 year old with a meltdown is not something I like to deal with on a regular basis, but before ABA came into our lives, it was a several times a day occurrence. 

Ryan earns points with a weekly punch-card system.  We “catch” him behaving appropriately and we give him lots of points immediately.  Then over the weekend, he can trade those points for game time on the computer.  (Because of his behaviors when I’m alone with him, he’s only allowed to play computer games when Wayne is home and supervising Ryan).  We’re generous with the points but still have to limit his game time to a certain degree, because too much time on the computer still leads to meltdowns, even when he’s playing his beloved games.

 Does ABA work for adults?

In a word, yes.  AutismSpeaks.org cites several recent studies that confirm that ABA techniques are effective tools for teaching and building on important life skills for adults with autism.  The benefits of ABA have not been studied nearly as much in adults as they have in children, but the results are there.

We have seen a dramatic increase in Ryan’s positive behaviors with the computer and a marked decrease in computer-related meltdowns since we started using ABA.  In my opinion, it works, and it works well.  However . . .

 The sad truth about ABA

The sad truth about ABA is that it only works as well as we do.  If we slack off on the positive reinforcement, Ryan’s negative behaviors escalate.  We have to be very diligent about reinforcing his positive behaviors, ignoring the negative behaviors as much as possible, and providing the appropriate reward. 

I’m not a perfect mom, nor am I perfect when it comes to implementing the ABA procedures and principles I was taught.  But the more I try to follow the program, the fewer meltdowns we tend to have, and that’s a form of reinforcement for me!  Maybe I need my own ABA system . . .

 

Have you had experience with an ABA program for your adult child?  Please feel free to share in the comments section below.  I’d love to hear your story!

 

 

Meet My Family

Raising six kids hasn’t always been easy for us.  Understand that it’s a blended his-mine-and-ours family, and it becomes more of a challenge.  Change up the mix to two with special needs and four with typical needs, and the challenge gets even tougher. 

In this first post, I’d like to introduce you to my family. 

Wayne is my husband and the delight of my heart.  We’ve been married since 1997.  He works as an IT specialist for a non-profit agency that provides Head Start and Early Head Start services to children in our community.  Wayne is also a distance cyclist and bike commutes 35 miles a day several days a week.  He plans to transition to providing direct care to people with autism and their families, including ABA advice down the road.

I am Jyl.  I’m an at-home mom and deal with some health challenges of my own, including fibromyalgia.  I enjoy reading, jigsaw puzzles, quilting, and embroidery, and have finished the first draft of my first novel, Untrue.  I also like finding healthy, plant-based recipes for Wayne and me to play with on the weekends.

Michael is our oldest child.  He currently teaches English as a second language overseas.  He has taught in Taiwan, Morocco, Turkey, Russia, China, Vietnam, and Indonesia.  He’s very interested in US politics and sports, especially US pro basketball and world wide soccer.

Alyssa is next.  The mother of two beautiful little boys (I admit I’m biased about my grandkids!), she works as a coder for a software development firm.  Alyssa grew up on fairy tales and still believes in the wee folk.

Michelle is a teacher in a developmental early childhood education setting.  Her area of expertise is children with autism.  She plans to start art school in the fall of 2016.  Her style is fantasy, very whimsical.  She’s also fascinated by Nicola Tesla, Albert Einstein, and their cohorts, so we can only guess at the directions her art will go.

Andrew, our older son with special needs, lives in a group home about a 20 minute drive from our home.  He works as a landscaper on a team through his day treatment program.  Andrew has cognitive impairment (they used to call it mild mental retardation), serious mental health issues, and a form of colitis.  He loves Star Wars and cowboys and spies, and taking things apart to try to “fix” them. 

Ryan, our younger son with special needs, attends a pre-vocational program at his day treatment program.  Ryan has moderately severe autism, cognitive impairment, and serious mental health issues.  He loves vintage cartoons and computer games like Mario.  He lives with us, as does . . .

Reeve, our youngest.  A junior in high school, he plays trombone in every school band and ensemble he can audition or volunteer his way into.  Music is a huge part of his life, and he plans to make it his career in some fashion.  He currently works at our local grocery store as a courtesy clerk.

Our lives are shared and enriched by Snowball the lab-mix dog and Amber the dusty tortoiseshell cat.  We’ve had pets throughout our marriage.  I can’t imagine life without their presence.

In a nutshell, that’s who we are as a family.  Stick around and get to know us, and let us get to know you.  This kind of life is a journey, and it would be great to have more friends along for the trip!