When I travel by plane I”m always reminded of the “way things are”. It is a fact of life that we must care for ourselves before we can effectively care for someone else. That”s why flight attendants instruct us before every flight, “position your own oxygen mask before assisting others traveling with you”. The lesson: You can”t help anyone, if you are incapacitated. So I want to start this series by pointing out some critical things that need to in place for YOU so that you can be an effective parent and advocate for your child with special needs.
#1 – A Personal Network of Support
Dealing with the emotional turmoil of a new diagnosis is difficult, however it certainly isn”t the last emotional strain that you will face as you advocate for your child with special needs. It”s important to develop your own ongoing, personal support system. And remember, “Wider is better”! Often just identifying and writing down all the support available to you will help you feel less isolated and more positive.
Tip: Consider all of the support options available to you – mentoring by another parent, local support groups, online discussion lists, web-based membership sites and decide which fits your needs and lifestyle the best.
Local professionals that can offer support and point you toward available resources include:
? Family doctor
? Specialist
? Physical therapist
? Occupational therapist
? Speech therapist
? Case manager
? Parent advocacy trainer
? Special education or resource teacher
? Inclusion specialist
? 504 Coordinator
Note: There are literally thousands of discussion lists, forums, newsletters, and experts available on virtually any diagnosis you could name. To find a variety to choose from, just type the following into your favorite online search engine:
“the diagnosis + type of support”.
For example: “ADHD + discussion list” produced 27,800 choices in less than 1 second at my favorite search engine.
#2 – A Problem Solving System
As this column continues, you will learn lots of practical advocacy strategies to help you in supporting you child, however even the most comprehensive advocacy training cannot possibly anticipate every challenge you may face. Because of this truth, an essential skill for any parent/advocate to develop is the ability to SOLVE PROBLEMS as they come up.
You need to know:
? Who to call
? Which experts to trust
? How to research options
The idea behind the Problem Solving Folder is to:
? Help you identify all of the help readily available.
? Organize contact information so that it will be easy to access in a few days or a few months when you need it.
? Offer you that sense of confidence that you aren”t all alone in facing this challenge.
Instructions for making a Problem Solving Folder:
1. Select a brightly colored folder that won”t be easily buried in mounds of paperwork.
2. Identify what information you want to keep in your folder. Possibilities might include:
? A list of your personal support network along with contact details.
? A reference list of the categories included in your advocacy notebook.
? A copy of the Wrightslaw Yellow Page – http://www.yellowpagesforkids.com/ for your state
? Emergency contact information for professionals that you are likely to need (family doctor, primary specialist, emergency room, mental health center, mental health center emergency contact, respite care providers.
? An emergency information form for each child with special health care needs.
? A list of contact phone numbers or email addresses for mentor parents in your area (along with their area of expertise) who are willing to offer moral support and/or advice.
? A list of recommended area professionals who have experience with individuals who have special needs (this might include doctors, dentists, specialists, therapist, psychologists, psychiatrists, counselors, teachers, etc.)
? A list of recommended websites or online resources that offer reliable information, answer questions promptly by email or in their forum, and provide genuine support.
#3 – A Stress Management Strategy
As one advocate put it:
“I don”t suffer from stress. I”m a carrier!”
For most advocates — stress isn”t a possibility, it”s a CONSTANT. So it”s vital to have stress management techniques that WORK FOR YOU and that you are comfortable using. Times of high stress are not the time to be learning a new technique. So practice your stress management system of choice regularly and have it ready to PULL OUT & USE when needed.
Raising a child with special needs is challenging to say the least, but you don”t have to do it all alone. Check back often and I”ll help you navigate the maze -one hurdle at a time.
2003 Lisa Simmons
