Monday, April 15, 2013

Hello Again! Future Life Planning Part 5



Phew! We made it adulthood! If you are still reading, I’m sure you have realized how important it is to be prepared, thinking one step ahead. We hope you have found some of our tips to be helpful. Thanks for reading!

Adulthood:
The adult system is a whole new ball game. The rules and regulations are different than the child/education system. Quality & availability of services differs from state to state, so find out where your state falls and what your child’s options are.

-A lack of funding for adult services in many states makes it a challenge for individuals to move onto something else. Many people wind up staying at home with their families with little to do during the day. Depending on the severity of their disability, parents often have to stay at home to care for their adult child missing out on employment opportunities themselves.

-A lack of life and job readiness skills is also an issue as well as a lack of jobs in the community.

-Partner with local agencies and non-profits with missions to create grassroots movements around addressing some of these issues.
www.jjslist.com is a great example.

-Let your adult child decide their next steps, if possible. Society has a tendency of boxing and labeling individuals with disabilities. We tell them what they can and can't do and what they are or aren’t capable of. It is a culture of compliance where individuals, who are largely dependent on their families or the state, have to rely on others and do as they are told.

-No matter how severe the disability, this process CAN and should be as person-centered and self-directed as humanly possible.

-Consider life skills tutoring to bolster independent living skills.

-NEVER assume something isn’t possible. Though accomplishing certain goals or mastering specific life skills may seem impossible, give it a chance. Even if learning to use the computer, meal plan, budget or grocery shop takes 2 years to learn, it is worth it in the end. Patience is important. Learning never stops for any of us and those with disabilities are no different. Their capacity to learn and grow is the same as you and I. Individuals may take longer to acquire certain skills but this doesn’t mean it can’t be done.

-Be prepared for life transitions. What will happen when you are gone? Though these topics are tough and unpleasant to think about, having a plan is in everybody’s best interest. Decide who will continue on with supporting your adult child after you are gone. You might need to appoint someone as guardian or executor of a trust. Consider utilizing agency support to help with some of this as well as life skills tutoring, home care, respite, etc.

-See Alyssa’s earlier post on creating a support team around your adult child. Having other people to count on will be good for everyone.

The purpose of these posts is to create a shift in thinking about disability. We encourage you all to see your child and their life through a new lens. Disability is not just a lack of something.  Every human on earth has deficits, though most of us aren’t labeled, categorized and stashed away in an institution or shut in at their family home because of it. 

As a society we need to focus on creating person-centered solutions for folks with disabilities in new and creative ways. They deserve the opportunity to have quality special education, employment options, the ability to live in their communities, and support services to learn the skills they need to live the lives they want to live. They deserve a say in the matter.

THANKS FOR READING!  MORE TO COME!

Monday, April 1, 2013

Welcome back: Future Life Planning Part 4


Hello again,
Before we talk about adulthood, we wanted to brainstorm some important skills for getting and keeping a job. You will also begin to see some of the struggles that adults with disabilities have in today’s society.

Job Readiness Skills: By Alyssa
-Be a good listener
-Responsible
         -Eating a healthy meal before a shift
         -Be on time (getting up on time)
         -Be well rested
-Focused
-Positive
-Task oriented
-Good hygiene
-Respect the rules, no stealing
-Friendly
-Appropriate with conversation, don’t reveal too much about your personal life at work

Skills that help you get a job:
-Basic math & reading skills
-Filing, sorting, copying
-Physical labor
-Good customer service

Challenges that our population faces (Alyssa & Tara):
-Getting around safely, public transit in smaller communities
-Employment
-Independent living
-Healthcare
-Quality special education
-Good support services
-Social activities
-Adequate agency support with a person centered approach

Wednesday, March 20, 2013

Hello Again: Future Life Planning Part 3

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Still with us? We hope you are finding these posts helpful and thought provoking. Next up we have high school:
Ages 15-21:
-This age range is all about getting prepared for adulthood, or ‘age-out’. After a child leaves the high school system (on or before their 22nd birthday) it can be a struggle to adjust in the adult system, as there are new rules to play by.
-Create a binder of important information. This should have a list of all medications (and what they are used for), emergency contact & important numbers & medical history. As soon as possible, help him/her learn the information (if possible) in the binder or know where to access it. By the time they reach age-out, hopefully they can be in charge of any updates in the binder and tell you what their disability & challenges are.
-If your adult child has health concerns, consider having them wear a MedicAlert product or keeping a card with important information regarding their disability in their wallet.
-Make emotional health and wellness a priority. This time in life is tough for everyone. Raging hormones, bullying and confidence issues run rampant amongst teens. Being different is not fun and kids are ruthless at this age.
-Be open to therapy or support groups (at any age).
-Encourage networking and build upon healthy relationships. Socialization and laughter is important.
-Think about next steps after your child ages out of the high school system; independent living options, employment options, day programming, developmental training, college, supported certificate programs (ex: www.nl.edu/pace/ ), developmental training & workshops, etc.
-Train your brain to think beyond what has been rammed down your throat for years and years regarding what your child can and can’t do. Stop assuming what their skill limits are. Set a goal early with your child about what THEY want for their life and work backwards. Focus on skill building.
-Encourage job readiness skills. Identify current skills, talents and interests. Work on fostering new skills that will be helpful on the job. Don’t be afraid to give your child responsibilities and hold them accountable for their actions. Enabling dependency and giving in will not help your child be a productive, self-reliant adult. 

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

Tuesday, November 27, 2012

Parents, you've got to keep movin' forward!



In previous posts, I gave you examples about the basic struggles people with disabilities go through while they are growing up. The basic struggles are; holding too much in, standing up for yourself, knowing that only the individual can move them-self forward and knowing when and who to ask for help. 

It is important for parents of small children with disabilities to grieve and accept that their child will live with challenges. These realities are always going to be there, but they don't have to be a barrier for success. Just because a child has disabilities does not mean that they cannot live full lives in their community. Building up your child's confidence, responsibility, life and work skills will help them become more able to live  independently in the future. Giving them space to grow and make mistakes is very healthy and important. 

As parents, the more you accept your child for who they are, the easier it will be to follow their lead, letting them experience all that life has to offer; the good, the bad and the ugly. Once you let go a bit, you might be surprised at their improvements and what they can accomplish. This supportive effort will slowly help them learn, grow and get stronger. I am in my 40's, believe it or not, making a living because  my parents accept and trust me to move forward at my own speed. I am responsible for myself and my life. 

People with disabilities slowly become more comfortable with handling life's challenges when they know that there is support always around them. 


All children are equally human in a different way. Love them and cherish them. Everyone has gifts. 

I hope this helps you, 
Alyssa