PARENT
STRATEGIES FOR PARENTS, BY PARENTS
A Note To Our Readers: Welcome to our BBB Guides, a series
of documents by parents, for parents on various topics.
When searching the web, I could find little in the way practical
solutions to issues like handling Halloween and large family gatherings.
Our message board, however always contains such fantastic tips offered by
our experts: parents of children with ASD.
These are parents of various ages, their children are affected with
various severities and they are all different ages.
About half of our contributors have more than one child on the spectrum.
I hope you enjoy this guide and the upcoming series; and
that they are helpful to you. If
you would like to contribute to or have ideas for future guides, please email me
at bbbautism@deaknet.com.
Thanks to all our great parent-contributors. It couldn’t
be done it without you!
Note: Our children are referred to as
first initials only and we don’t include last names. We never publish these
comments without permission from the contributor. Husbands/wives are not
mentioned by name either.
BBB Autism Online Support Network: http://www.bbbautism.com/club_front_page.htm
- club_new_front_page mailto:liz@deaknet.com
By
Khris
The best way to advocate for your child is to know
them well, then convey that knowledge to his educational team. Be an active
member in his education, try to have plans in place to deal with problems before
they happen rather than waiting for things to crumble. Build supports into the
classrooms, educate the educators, and don't be afraid to be the squeaky wheel.
Know your rights and have an advocate. But most of all, don't ever loose sight
of your child in all of this
ADVOCATING FOR YOUR CHILD
By Bernie
The best way to advocate for your child is to get educated.
I know here in NJ, COSAC, which is an advocacy agency, offers workshops to
parents for free from knowing your rights, IEP information, etc. DH and I just
went to one not too long ago regarding Guardianship and Estate planning.
Be one step ahead always. When you mail anything to the school district send it
certified. Keep a phone log as to whom you spoke to, when, what time, what the
subject was about.
Leave paper trails. Believe me,
when needed this will be handy. Sometimes I would send follow up letters
confirming what was said and agreed upon.
Connect with other parents. We are each other’s best resources because as we
all know the district (well, mine anyway) will NOT tell you what's available out
there in terms of recreational programs, etc.
Parents can do this by seeking support groups in their areas and networking.
Also joining support forums, and listserves on the World Wide Web is a nice way
to connect with other parents as well.
By
Lynn in BC
As for being a parent advocate for your child again I cannot
over-emphasize the importance of this! You know your child better than any one
else! Teachers need to know how best to teach your child and what works with
them best. Teachers don't always communicate amongst each other and therefore if
something works for one teacher write it down and pass that tip on to future
teachers. It helps the teacher. They won't have to spend half the year learning
how to teach your child they will have a guideline. Have a folder with
information about the disorder and articles about how best to teach children
with that disorder and highlight those things, which apply to your child. The
squeaky wheel gets the oil! Make your presence known in the school. The more you
ask the more you get! Make sure you are aware of any tests your child undergoes
and that you are presented with a copy of the results! This should go in you
file! Find out exactly what services are available and whom you have to talk to
get them for your child! It helps if you are able to volunteer in the school and
if you can get onto the PAC as well because this keeps you in touch with the
school in a different capacity and you can learn about lots of things this way!
I know I 've been on the PAC for a few years and was able to get a
psycho-educational test done for my son through the school board faster because
I helped the LA teacher with her reading program. She put a face to a name and
asked me what services I would like to see my son get and I told her!
This teacher my son has had for two years is impressed with
A's ability to find things in books and his drawing skills and uses them! He
asked permission to keep a number of my son's art projects for his idea
portfolio because they were so well done! He also sends my son to the library to
find pictures or articles about things they are working on in class because he
is quick at that kind of thing! My son is the student who keeps the class on
time for gym, computers and music classes because he needs to keep a routine and
has a schedule at his desk. He gives the teacher five-minute warnings and then
gets everyone out the door on time! This is his assigned job! It is the parent
getting a teacher to see his uniqueness and the teacher building on his
strengths! For a child with AS this is fantastic!
The only letters I have written to school so far have been requests for certain
teachers. Again putting myself in the school I have been able to learn which
teachers have the best temperament to teach my child.
The Reflective Letter and Case Management for Your
Child
By
Liz
One of the most helpful pieces of information I ever got
came from Lindsay Moir (special educational consultant
http://www3.sympatico.ca/l.moir/) and it was about reflective letters.
When you have a conversation on the phone with someone about your child,
take the most accurate notes you can. Then,
while you still have it in your mind, put together a letter reflecting upon this
conversation. The letter should
start out something like this:
“Dear ________
I am writing to reiterate our conversation of this
afternoon, November 3, 2001. Below
you will find my interpretation of the matters we discussed.
If I don’t hear back from you by November 17, 2001, I will assume my
information is correct.”
Below that, list the salient points of the conversation.
You can word this as pleasantly or as business-like as you prefer.
This is a tool you can use to get information in writing.
Know your rights. If
you live in Ontario and see that Mr. Moir is coming to speak near you, I highly
recommend you attend. Other good
presentations to attend in York Region are those by Lyn Ziraldo of Learning
Disabilities Association of Ontario http://www.ldao.on.ca/.
Once you learn your rights, do not be afraid to stand up for your child.
If you are told something that doesn’t ring true to you, ask for it in
writing. If you are told ‘no’,
simply try the reflective letter.
If your child is being sent home from school constantly, ask
if s/he is being suspended. If so, ask for it in writing. Keep all these
letters.
Keep everything, put together a binder or banker’s box of
all your logged phone calls and correspondence.
Don’t approach in an angry or combative way.
Be reasonable, educated and helpful.
Don’t burn your bridges if you can help it.
Case managers come and go out of our children’s lives. We
alone are constant! Become your
child’s case manager; no one will do the job as well as you.
Please note: The information contained within this guide and
the other BBB Guides are not the advice of a physician or other professional.
This Guide contains strategies, tips and opinions as offered by other
parents of ASD kids. Always seek
medical advice.
BBB Autism does not recommend any particular
therapy/intervention, but ALWAYS endorses your right to be INFORMED!!!
OTHER
BBB PARENT GUIDES AVAILABLE
CONTAINS PRACTICAL INFORMATION BY PARENTS FOR PARENTS
Available on request, e-mail liz@deaknet.com and ask for: (now available in PDF format)
1.
Halloween
2.
Epsom Salts (long version)
3.
Epsom Salts (condensed)
4.
Pros and Cons of telling your ASD child his/her diagnosis
5.
How we advocate for our children
6.
Guide to holidays and large family gatherings
A notice to our readers...
The
founder of this document and the BBB Autism support club contributors are not
physicians.
This document may references books and other web sites that
may be of interest to the reader. The founder and contributors make
no presentation or warranty with respect to the accuracy or completeness of the
information contained on any of these web sites or in the books, and
specifically disclaim any liability for any information contained on, or
omissions from, these books or web sites. Reference to these web sites or
books herein shall not be construed to be an endorsement of these web sites or
books or of the information contained thereon, by the founder or contributors.
The
founder reserves the right to make decisions as to whether contributions are
appropriate with respect to content, length, etc. We will not publish offensive material using foul language,
or contributions that are inflammatory or disrespectful to decisions by other
parents (i.e. therapies). We do not generally accept contributions if they are
ads for private service agencies/clinics. We reserve the right to edit content,
but will inform you in advance if we are going to do this. J
(c) BBB
Autism – October 2001
This E-News is the intellectual property of BBB Autism Support
Network.
Permission to reproduce and hand out is granted, provided the document is displayed in its entirety. Other permissions may be requested by email: liz@deaknet.com. The purpose of this copyright is to protect your right to make free copies of this paper for your friends and colleagues, to prevent publishers from using it for commercial advantage, and to prevent ill-meaning people from altering the meaning of the document by changing or removing a few paragraphs.
Note:
BBB Autism Support Network would like to thank the parents who contributed and
Gabrielle who helped format this version of the document.