3 Things Every Parent Needs When Raising a Child with Special NeedsWhen I travel by plane Im 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. Thats why flight attendants instruct us before every flight, "position your own oxygen mask before assisting others traveling with you". The lesson: You cant 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 isnt the last emotional strain that you will face as you advocate for your child with special needs. Its 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 arent all alone in facing this challenge.
Instructions for making a Problem Solving Folder:
1. Select a brightly colored folder that wont 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 dont suffer from stress. Im a carrier!"
For most advocates -- stress isnt a possibility, its a CONSTANT. So its 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 dont have to do it all alone. Check back often and Ill help you navigate the maze -one hurdle at a time.
2003 Lisa Simmons
How to Successfully Homeschool Your Child with Special Needs Lisa SimmonsAs a researcher, specializing in disability topics, I often get emails from parent or grandparents interested in home schooling their child (grandchild) with special needs.
Most recently, I received this message from Joyce:
I would appreciate leads on home schooling Special Needs kids with multiple diagnosis as we will home school our angel after this year of home based Special Education - 8th grade. Getting various sites together and ordering things available to home schooling parents and/or teachers. Any suggestions appreciated. Your site is a real help and inspiration for us at our house!
The reasons parents decide to home school a child with special needs vary:
They want their child to be able to learn at their own pace.
They want their child to work at a level that is appropriate to their developmental stage and have the flexibility to introduce new skills and concepts when the child is ready.
They want to create a more ideal learning environment. Children with learning disabilities frequently have difficulty with concentration and focus in a traditional classroom.
They want to use teaching methods that suit their childs particular learning style.
They want their child to feel accepted and free from teasing, bullying or humiliation from peers.
They are looking for an alternative where their children can gain self-confidence - one that includes less criticism from teachers and less comparison with other children.
They want their children with special needs to reach their full potential and not be limited by the use of "cookie cutter" educational methods or the lack of experience with special needs in their neighborhood school.
They want to ensure that their at-risk child will not be exposed to gangs, drugs, and guns.
Their needs, however, when they prepare to tackle this challenge, are often very similar. They want to know where they can find the information, tools, and support to be an effective educator for their child. If you are interested in home schooling a child with special needs, here are the resources to help you get started.
1. Learn the rules. Each state has their own set of regulations for home schooling and you will need to be familiar with yours. Read the regulations and discuss them with current home schoolers in your own state, as many regulations may be vague and open to interpretation. A seasoned home schooler in your home state should be able to tell you how confusing regulations are generally understood. You can find the home school regulations for many states here:
http://www.home-ed-magazine.com/HSRSC/hsrsc_lws.rgs.html
2. Study the fundamentals. The National Home Education Network offers a New Homeschooler Information Area as well as a New Homeschooler Encouragement Newsletter to help you get off to a good start.
http://www.nhen.org/newhser/default.asp?id=227
3. Consider joining a national support network. Frequently parents can gain valuable information and contacts by joining an association specifically for home schoolers. Two you will want to consider:
The National Challenged Homeschoolers Associated Network
NATHHAN is a Christian based association that specializes in equipping parents (or grandparents) to home school children with special needs.
http://www.nathhan.com/
American Homeschool Association
AHA is a service organization sponsored in part by the publishers of Home Education Magazine. The AHA was created in 1995 to network home schoolers on a national level. They provide online news and offer a discussion list, which provides news, information, and resources for home schoolers. http://www.americanhomeschoolassociation.org/
4. Use online resources to brainstorm lesson plan ideas. There are several excellent informational websites that offer tons of practical tips and ideas when it comes to home schooling a child with special needs. Check out:
Home schooling Children with Special Needs
http://www.geocities.com/Athens/8259/special.html
Home schooling Kids with Disabilities
http://members.tripod.com/Maaja/index.htm
Home schooling Special Needs
http://www.gomilpitas.com/homeschooling/weblinks/specialneeds.htm
5. Learn from the experts. For more detailed ideas and instructions that you can refer to frequently, you will probably want to invest in some resource books. Some I recommend are:
Home schooling the Child with ADD (or Other Special Needs): Your Complete Guide to Successfully Home schooling the Child with Learning Differences
http://www.amazon.com/exec/obidos/ASIN/0761535691/ideallivescom
Home Schooling Children With Special Needs
http://www.amazon.com/exec/obidos/ASIN/1568570104/ideallivescom
Choosing & Using Curriculum: For Your Special Child
http://www.joyceherzog.com/products/prod05.html
6. Learn from other parents. I always encourage parents to find a place where they can safely exchange ideas and vent frustrations. If there is a local support group of parents that home school, join. Even if they have limited experience with special needs they may still be able to provide general support regarding home schooling regulations and materials. For special needs expertise, you may want to consider an online support or discussion group.
The Home school - Autism Discussion List
http://www.isn.net/jypsy/home-aut.htm
Home schooling Special Needs
http://home.att.net/MikeJaqua/special/frames/
Blindhomeschoolers
This is for families who are home schooling/parenting a blind child. Teachers of the Visually Impaired who would like to share tips and suggestions are also welcome.
http://groups.yahoo.com/group/blindhomeschoolers/
Home Schooling Kids with Special Needs
http://groups.yahoo.com/group/hskids-specialneeds/
Home schooling Kids With Disabilities
http://groups.yahoo.com/group/hkwd/
Home schooling Children Who Are Language Impaired
http://groups.yahoo.com/group/homeschoolLI/
Home schooling Deaf and Hard of Hearing children
http://groups.yahoo.com/group/deafhomeschool/
Special Needs Home schooling! Forum
http://www.home-school.com/forum/special/
Home schooling Email List for Special Needs/Medically Fragile Children.
http://groups.yahoo.com/group/special-needs-homeschool/
7. And finally, look for curriculum and daily lesson materials that are from a quality provider and offer true value to your child. Resources that I recommend include:
How to Learn - How to learn is an excellent starting place when it comes to materials because they offer a free learning styles inventory. The inventory is a quick and easy online test that will help you figure out how your child learns best -- by seeing, hearing, or doing. After the test, there is a follow up article to help you understand how to use this information to help your child succeed. In additional they several terrific solutions for students struggling with reading, spelling, and test taking.
http://www.mcssl.com/app/aftrack.asp?afid=70730
The Home School Source - Although this site offers many excellent home schooling products for sale, the unique feature of the Home School Source is their lending library. This is a terrific option for new home schoolers because it allows you to check out and try and a wide variety of learning materials for a very reasonable membership fee.
http://www.thehomeschoolsource.com?Affid=15
Remedia Publications - For daily work, Remedia can be a great solution. You can select the subject (math, reading, social studies) or skill (listening, following directions, test taking) youre interested in and find products targeted for specific grades. Another plus -- virtually all of Remedias products include some type of worksheets. s
http://wetrack.it/remedia/af.cgi?17
Home schooling is not the right solution for every family. However, if its the right solution for yours - I hope that these tips and resources will help make the transition a little easier.
Copyright 2004, Lisa Simmons
How to Grow Your Own Parent Support Group Lisa SimmonsParent support groups are a terrific way for parents facing similar, challenging situations in life to offer each other encouragement, share ideas, and generally reduce the stress of a trying time.
Unfortunately, parent support groups are often started and lead by Moms who may have little experience organizing and managing a group. This can lead to poor outcomes for individual group members and great frustration for the group leader.
If you are struggling to get your parent support group up and running, here are some tips to help your group really take off!
1. Learn from the experts.
The staff at Parent to Parent of Pennsylvania have put together an online guide that goes through all the basics of starting and running a parent support group. Visit:
http://www.parenttoparent.org/Sup-run-t.htm
2. Identify why people arent coming.
If you know there are a pool of parents in your area facing the challenges your group addresses, the first thing you need to figure out is -- what road blocks are keeping these folks from attending your meetings.
=> Is childcare an issue?
=> Are the speakers/topics youre selecting relevant to the age of their kids?
=> Are your meetings too structured or too informal to meet their current needs?
=> Is your meeting site unfamiliar or difficult to find if you are drawing parents from multiple communities?
=> Do your meetings seem to go on forever, break down into a hundred mini-conversations or run out of steam due to poor group participation?
Once you know the real issue(s) holding your group back, it will be much easier to solve them. You can arrange for on-site childcare, find different speakers, include a map with your meeting reminder, etc.
For tips on how to keep your meetings flowing see, "Facilitation: The Importance of Managing Group Meetings" at:
http://www.nacac.org/pg_facilitation.html
3. Talk honestly with your core group about your frustrations and limitations.
Most groups have a small group of loyal attendees. These are the folks that should be stepping up to help you out. Most likely one of two things is happening -- either they dont know that you are feeling exhausted and overextended or they dont know how to help.
By talking honestly with this small group about your frustrations, you can open the door to solving the issues as a group. Also, remember that volunteering does not come naturally to many people; especially if the tasks that need done are things theyve not done before. They may feel intimidated by what a good job youve done and feel they could never put together anything half as good. Look for small un-intimidating tasks that will help them get their feet wet or invite them to "help you" do some of the tasks that need to get done. This way they get involved, they become familiar with a part of the job you would like to delegate, and you get some immediate relief.
4. Try to determine why word of mouth isnt helping your group.
Most parent support groups grow primarily by word of mouth because they are truly fulfilling the needs of their members. Everyone wants to share a solution.
=> Are your present members reluctant to recommend your group? If so, why?
=> Have you notified local professionals that your group is available? Many professionals who work with parents would love to have a flyer or contact name to offer when faced with a distraught, stressed out, or overwhelmed parent. Professionals to consider are: doctors, case managers, special education or other school staff, preschool or early intervention programs, hospital social workers, speech therapists, occupational therapists, physical therapists, and vocational rehabilitation workers.
=> Have you utilized the local public service announcement system? These are usually free and can be done in newspapers, on the radio, or on local access cable networks. Be sure to focus not only on the where, what and when of your group but also on the benefits your group can offer such as:
*Providing on-going support
*Helping in times of crisis
*Sharing positive coping strategies
*Helping focus anger and energy in positive ways
*Sharing information, ideas and resources
*Providing training for parents to increase skills
*Help in dealing with educational, medical and other service agencies
*The opportunity to relieve loneliness and form new friendships
5. Consider merging.
Maybe a parents group focused only on a single issue (i.e. parenting a child with Down syndrome) isnt a major need in your community. If you cant create an active group, consider shifting to a group that meets the needs of a broader group of parents (i.e. raising children with special needs). One benefit of merging -- access to another person used to leading. If both you and the other groups leader are stretched for time and energy, consider alternating the lead role. This way you each immediately have your workload reduced by half and can both benefit from the talents and experiences of the other.
6. Make use of technology.
When youre looking for ways to reduce your legwork and maximize participation, the Internet can be a terrific ally.
=> Send out your group newsletter by email to reduce both financial and time expenditures.
=> Send out flyers and meeting reminders by email.
=> Consider starting an electronic discussion list for your group.
Services like Topica.com and Yahoo Groups allow you to do this free of charge. The advantage of having this type of list is that the group members can interact more frequently and build more rapport -- this way they are coming to see friends when meeting time roles around, not strangers. The other advantage is that it allows families to participate that may not be able to arrange childcare during the scheduled meeting times.
=> Make contact with other parents online. For example, both NICHCY and Wrightslaw.com offer state resource sheets for parents of children with special needs. By sending an email to the contact person listed on these sites, you could have your group listed as an available support in your state.
NICHCY State Resources Page
http://www.nichcy.org/states.htm
Wrightslaw Yellow Pages for Kids with Disabilities
http://www.fetaweb.com/help/states.htm
I hope that some of these ideas will help get your group growing into the active and productive one you envisioned!
Copyright 2004, Lisa Simmons.
About The Author
Lisa is the director of the Ideal Lives Advocacy & Inclusion Center, providing a quick and easy-to-use resource directory and a wonderful community of support for parents raising children with special needs.
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