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.
