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Through the Looking Glass (Part 3)

by Mary Mazzoni on May 31, 2011

Today we come eye to eye with four more big realities of life beyond IEPs. We’ll explore places you’ve likely visited already in your own imagination. Frankly, it can be scary to look straight at them.  But today we’re looking at them together.

All sorts of questions and feelings may bubble up.  Breathe deep. Remember,  we don’t need to have a “perfect plan” to address everything we see today. We’re on a journey. For today, it’s a big step just to take a peek.  Let’s get started.

Health and Safety

As our kids mature, we’re not with them 24/7.  They may find themselves in unfamiliar and potentially dangerous situations.

If our kids have intellectual disabilities or social skills impairments, we may be particularly concerned about their vulnerability.  In future posts, we’ll look closely at concrete ways our kids can learn how to interact safely with people in various aspects of their lives.  An example is the Circles curriculum which uses a color coding system to teach relationship boundaries and relationship-specific behaviors.

Whatever our kids’ disabilities may be, they will need skills to make safe choices.  In future posts, we’ll look at ways to teach and practice self determination skills such as problem solving and decision making.  It’s also important for us to talk candidly with our kids about topics such drugs and sexuality in ways they understand.

As our kids reach adulthood, they’ll leave their pediatric  health care providers, their health insurance status may change, and they’ll need to assume new responsibilities for their own wellness.  There is so much for us and for our kids to learn!  Excellent free resources include:  The Transition Healthcare Checklist by the PA Department of Health, the National Medical Home website by the American Academy of Pediatrics and PYLN Healthcare Toolkit by the PA Youth Leadership Network.  These resources address a myriad of planning considerations that we’ll visit in more depth in future posts.  Also,  Making the Move to Managing Your Own Personal Care Services is an excellent free guide for young people who utilize personal care services.

Legal Responsibility

We need to consider our kids’ ability to self-regulate their behavior in all sorts of community environments. IEP protections such as positive behavior supports and manifestation determination procedures are required in public education settings.  These  protections are not explicitly required when our kids are out and about in the larger community. When kids reach the age of majority, consequences for legal infractions become more severe.  It’s critical that our kids learn practical self-regulation strategies that they can use in all sorts of situations. If our kids have social skills impairments, they’ll need to learn that some behaviors that were merely unusual when they were children may actually violate laws when they become adults. Future posts will address self-regulation and social skills in detail. Meanwhile, you may want to check out the following resources:  The Incredible 5 Point Scale,  A 5 is Against the Law, and Preparing for Life.

We also need to realize that our kids can enter into legally binding contracts beginning at age 18, unless they have signed a power of attorney agreement or their rights have been limited through legal proceedings such as guardianship.  This reality has huge financial and legal implications.  Are our kids prepared to make informed decisions and to seek good advice when needed?  Future posts will address these questions in specific detail.

Getting Around

One day the yellow school bus will stop coming.  How will our kids get to work, post secondary education, recreation, medical and social destinations?  For some kids, learning to drive is possible, but requires more extensive or specialized instruction than we can provide ourselves as parents.  For other kids, driving isn’t an option.  They may get around on foot, bike or via public transportation or car-pooling.  It’s important to plan ahead.  How will our kids learn needed skills?   How can they access whatever transportation options are available to them?  Stay tuned to future posts as you consider these questions.

Networking and “Natural Supports”

Phew!  Let’s take a deep breath.  This whirlwind trip beyond the looking-glass can leave us feeling overwhelmed.  How can we cope with all this?

Truth is, no one can grow up, function in society, and enjoy quality of life as an adult – alone.  Independence is a myth.  For all of us.  No matter how hard working and talented we may be, we are, all of us, interdependent. Whether we have disabilities or not.  There are people in our lives whom we encourage and support, and there are people in our lives who encourage and support us. 

Our kids need broad networks of  support.  So do we.  Parents and paid (agency or school) staff do not a “village” make.  An important part of helping our kids get ready for adult life is helping them develop relationships of mutual support and connection. In future posts, we’ll learn how families have intentionally built  Circles of Support that have greatly enhanced the quality of their lives.

At Life After IEPs, we can support and encourage one another.  Have a question?  Need some encouragement?  Have an idea or supportive word that may help someone else?  Post a Comment! Or send me an email.

Together, step by step, we and our kids can build the skills and connections we need to thrive now and on the other side of the looking-glass.

What are your thoughts as we journey together?

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