Friday, February 22, 2013

Welcome back: Future Life Planning Part 2

Thank you for tuning in! As I mentioned before, Tara (my life skills tutor) and I made a LONG list of things for parents to remember. This information is based on our own experiences and disability struggles. We hope you find some of it useful.
Ages 4-14:
-Continue encouraging well-balanced, healthy meals and snacks as well as lots of physical activity. Kids are more likely to continue with these patterns as adults as apposed to learning how to eat healthy later in life.
-Continue with any therapies that were suggested or pursue evaluations and testing if you haven’t already (and know something is off).
-Learn as much as you can about federally mandated special education and make sure your school is complying with the services and therapies your child is entitled to.
-Kids with special needs often fall through the cracks, especially students with developmental delay. Schools are not always equipped to provide 1-1 support and students can fall behind very easily and continue to be behind.
-Schools & teachers can only do so much. Parents need to do their part in making sure their children have healthy and safe home environments.
-Hire tutors or extra support for your child if you can.
-Educate your child about their disability. If possible, help them to name their condition and challenges. This will be helpful in the event they need medical attention while you are not around or if they need help from Police or Fire Dept’s.
-Encourage advocacy skills. This is one of the most important skills you can teach your child. Teach them to be brave, strong and to speak up for themselves. Teasing is all too common at this time and children with disabilities are far more likely to be teased.
-Explore your options (in your state) regarding Special Needs Trusts. These accounts will ensure that your child can have a future nest egg that won’t affect government benefits (SSI, SSDI, Medicaid/Medicare). Setting aside even a small amount of money early on can make a HUGE difference in the life of your adult child. It could mean the difference between them living in their own condo or small house versus a sterile government facility (institution, nursing or group home) with limited options for an integrated life in the community.
-Find out what support services your state offers for your child (both as a child and as an adult). Explore the adult system EARLY. If there are waiting lists for services, get on them as soon as you are able. Sometimes it takes years and years to get services, depending on your state.  In IL, for example, there is a waiting list for community services and supports with 22,000 people on it with only a few thousand new individuals being served every year. People here have limited options for housing and often wind up in run-down state facilities or at home with their parents instead of living independently in their community.
-Ask questions & get involved. ADVOCATE! Find out what your options are.

Monday, February 11, 2013

Future Life Planning Part 1: If you were a parent, wouldn’t you agree that it’s good to have options and be prepared when it comes to your kids?

We do too.

Having a child with special needs is often times stressful, overwhelming and full of questions and concerns.

Tara (my life skills tutor) and I had this idea to take our experiences with our own disabilities and turn it into a guide for parents filled with important things to think about while raising a child with disabilities.

My friend Tara Wickey is an advocacy specialist living in Chicago, IL. She has a B.S. degree from New York University and a M.S. degree in Public Service Management from DePaul University n Chicago, IL. 

Since the age of 15, Tara has worked with various organizations and projects (in IL, NY, England, Ireland and Kenya) committed to furthering opportunities for disadvantaged populations. 

She currently works as a life skills tutor and activities facilitator at Center for Independent Futures as well as a Community Organizer for The IL Self Advocacy Alliance. Tara’s experience with Muscular Dystrophy, a degenerative muscle disease, helped shape many of the tips you will read below.

Future Planning: Tips for ensuring a life of quality for your child with special needs
By: Alyssa Ruzzin & Tara Wickey 

Ages 0-3:
-Set up healthy eating and living habits.

-Consult a doctor or specialist if something seems off about your child. Though it is nerve-wracking, having a full picture of what the situation is gives you power in addressing issues or delays early.

-If your child receives a diagnosis (or partial diagnosis) get informed & make a plan.

-Follow through with treatment plans, testing and assessments if a doctor recommends them.

-Take advantage of early intervention programs if they are available. In many states, developmental evaluations and treatment are free.

-Age 0-3 is the MOST crucial time of development for young children. Therapies (physical, occupational, behavioral, play & speech) can make a world of difference in the development of your child.

-Work with your child as much as possible following the guidelines or suggestions of therapists and doctors. 

We are working on the next installment so check back again soon for more on this subject.

Alyssa and Tara