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From one parent to another...10 Things I Have
Learned
(Donna Cohen)
1. Be sure to have a life other than one of autism. Everybody in your
family should have some interests and other friends, totally unrelated
to your child’s diagnosis.
2. Find two or more babysitters who you can trust, train them to work
with your child, especially around communication, safety issues and
routines, then be sure you get out of the house once in a while to do
grownup things!
3. Trust yourself first, then trust the professionals. You know your
child best. Internet lists such as the CT FEAT Parent’s Only Listserv
are a great place to get all sorts of opinions, and to benefit from
other people's experiences. Before you know it, you'll find yourself
answering somebody's question and the circle of information and
friendship builds from there.
4. Educate yourself, not just about autism intervention but also about
special education law. The sooner you do this, the sooner you will know
how to advocate effectively for your child in order to be sure he or she
receives an appropriate and quality program. Other parents of children
with autism are invaluable for this type of help.
5. Do NOT try every "cure" you hear about. Before you put your child
through anything, decide if it's worth the risk, if your family can
handle it, if it makes sense, if you can handle the financial demands
without other family members suffering, etc. Avoid unethical people,
whose main interest is to make a buck off of our situation.
6. Get out in the community and teach your child the skills he or she
needs to manage some family outings. For example, to begin teaching
acceptable restaurant behavior, start by going to informal family
places, off peak hours. That way if there is a problem, you will be more
comfortable working through it. The earlier you do this with your child,
the better chance of a "normal" family life.
7. Teach him or her a new skill that you know will be difficult, when
BOTH of you are ready. If toilet training is an issue, be sure you will
have the stamina to be totally consistent, otherwise you will frustrate
your child and set him or her up for failure. My child did not go to
sleep by herself until she was 8 years old, because I did not have the
energy to do the training. Once I was ready to take it on, it took very
little time; I was able to ride out the tantrums because I was ready to
make this a top priority.
8. Take vacations. A change of scenery is a good thing. The key is
figuring out how to make it work so that it's not MORE work than staying
home. Bring along an extra adult, rent a house instead of a small
cottage, buy a little TV/ VCR that you can lug around. Your family
should not be cheated out of family vacations!
9. Stay in touch with friends and family members who do not have
children with special needs. Talk about your children, just as most
parents do when the topic comes up. Be sure to ask about their children
and listen with an open heart. Recognize that this might be difficult
for you at first; this is normal. Be patient when others offer
unsolicited advice even when it seems wrong or insensitive. Just ignore
it. They mean well, and it’s fairly easy to change the subject when
conversations are heading into uncomfortable topics.
10. Enjoy your child for who he or she is. It seems obvious to me now,
but early on I was caught up in the autism and the ABA programs, and all
of the research and reading, doctor visits, etc. I almost lost
appreciation for the simple essence of who my child is. Now I focus on
her strengths while I continue to work toward helping her reach her full
potential.
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