Friday, 25 April 2014

18 of each

When first becoming a parent I did not even consider that a huge part of the job description was going to be advocating for my child and how much that would entail.  This part of my parenting role became more important and much larger over time between children being diagnosed with special needs and accessing school and their community.

Become an expert about your child's disability
In order to teach others about your child's needs you need to understand their strengths and weaknesses. You need to know strategies that help your child compensate for his or her weaknesses.  Keep in mind the uniqueness of your child although they may have a "common diagnosis" they are still individually affected by their challenges.  We commonly tell people we have 18 children.... one of each, when describing their challenges even though many have overlapping diagnosis.

Know your child's rights
Be informed about your rights in the subject you are advocating - whether you are advocating at school, the doctors or in the community all these places have rules they must follow so as a parent do your research.  "Google" is my best friend when it comes to finding out mine and my child's rights.

Document, document, document
Having accurate easy to access documentation of your child's medical information, assessments, education plans, report cards, etc is extremely important.  We keep all information regarding each child organized in a binder that can be easily transported to any meeting.  By having all the information organized we appear more professional and competent which helps when all you want is support for your child.

Make notes summarizing any interactions with professionals regarding your child so you can always refer back.  Document what the next steps or follow up actions that were agreed upon.  When making phone calls document the time and date even if you are leaving messages. If you have requests where applicable put these in writing and allow for written responses so you create a paper trail.  This paper trail will become necessary if you don't get the desired results and need to advocate at a higher level.

Keep your emotions in check and keep on topic
When meeting about your child have clear goals in mind and keep bringing the meeting back to those goals.  I have found that the professionals at meetings frequently use distraction as a way of not dealing with the issues, keep on topic, be the "broken record" bring the conversation back to your goals.

Understandably discussing your child's needs can be extremely emotional but when advocating for your child you need to keep your emotions in check.  If you get so worked up that you can't talk or are crying you have done the professional a favor and got yourself of topic.

As a parent you are your child's number one advocate when the teachers, doctors and other professionals go home at the end of the day you will still be there with there.  Remember you know your child best and the professionals are there to help.

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  1. Wow. This list of special needs parenting advice comes from a very powerful place. You sound like an awesome advocate for your children. I'm guessing that parenting 18 children will do that that to a gal. Bravo! My 18yo daughter has moderate cerebral palsy and we lead a relatively simple life. This list feels...empowering! (Visiting from LoveThatMax!)

  2. This is AWESOME advice! Appearing professional, organized, informed, and in control can make a huge difference in getting what your child needs! It's also been my experience that being "dressed for success" is extremely important too!