Advocacy from a parents perspective

Why Do You Need an Advocate?

Authur: Dan Coggshall

My daughter’s first IEP meeting was a disaster. They sat my pregnant wife and I down in chairs made
for kindergarteners and began to tell us everything that was wrong with our amazing daughter. They
used terms like “z­score” and “standard deviation” and presented us a document full of acronyms, like
LRE and PO, and abbreviations like “grp” (because the two extra letters in group were apparently too
much to write).

I was confused and I was sad. They kept saying we were part of the team, but everything we said was
dismissed. They kept saying “IEP” which I knew meant individual education plan, but they were clearly
trying to put our daughter in the same program they put every other kid in.
My wife and I tried to explain where we were coming from. We tried to share our daughter’s unique
gifts and challenges. We tried to get her the program we knew was right for her. But, we didn’t speak
the language. We were too emotional. We were too angry. They had a rebuttal for everything we said.
They had wording that made them bulletproof. This was one of the most significant days of our lives.
This was a regular Tuesday for them.

I consider myself a pretty smart person. I went to college. I’ve worked in education. I’ve negotiated
contracts. I’ve made myself an expert on all the medical aspects of my daughter’s syndrome. But, I was
totally lost coming out of that first meeting.
I became determined that it would be different the next time. I read every book I could find. I poured
through websites. I joined support groups. I attended training’s. In this process, I realized two things:
1. Unless I devoted all my waking hours to it, I would never have time to learn everything there is
to know about educating children with disabilities.
2. I would never be able to turn off the emotions when it came to my own daughter.

I realized I needed help. I realized I needed an advocate.

Special Education law allows parents to include anyone with special knowledge of the child on the IEP
team that makes decisions about the child’s education. This could be a neighbor, a tutor, a volunteer
from nonprofit, or a professional advocate who makes his or her living helping parents of children with
disabilities navigate the special education system.
Unlike lawyers, who bring with them high fees, long delays, and opposing lawyers, advocates can sit at
the normal IEP table and work within the team to represent the needs of the child with disabilities.
Why did I need an advocate? Why do I think you need an advocate, regardless of your unique
situation? Here are five reasons:

1. You are outnumbered. At almost all meetings, the parents are outnumbered. It’s not unusual
for it to be one parent up against four or more people from the school district. Sure, everyone is
supposed to work as a team and I have heard some great stories of truly collaborative teams(just as I’ve heard stories about unicorns), but it’s usually you against them. One voice against
four is really hard.
A good advocate is an extra voice on your side in the meeting. A good advocate can bring
balance to a meeting and provide back­up. With an advocate present, the school personnel will
be far less likely to try to gang up on you or take advantage of you.

2. The people from the school know more than you. This is their job. They know the
acronyms and the policies. They almost always write the documents you are reviewing. They
talk about things before the meeting and come in with a plan ­­ without you. You are working
just to get up to speed on what they know.
A good advocate can help you keep pace because an advocate can walk in knowing the things
you don’t know. A good advocate speaks the language and knows the rules.

3. The people from the school know less than they should. Just because it is their job,
doesn’t mean they are good at it. Very few people who work for the school have read the
applicable special education laws. More than likely, they did not study the pertinent Supreme
Court cases. What they know is what they’ve been told and what they’ve seen. They know the
way “they” do things ­­ not the way they are supposed to do things.
A good advocate has read the law. A good advocate has seen special education implemented in
other places and has seen how it’s supposed to happen, not just how it happens in that
particular school. A good advocate can come to the table with ideas and solutions balanced
with an understanding of the law to call the school personnel out when they are breaking it.

4. You love your kid too much. It’s hard to make a point and cry at the same time. Emotional
pleas in the movies often win the day and end in slow clapping. Emotional pleas at the IEP table
usually involve a lot of blubbering and end with awkward silences. Worse, yelling and name
calling can destroy any good will the team has toward you.
A good advocate cares about your kid, but can talk dispassionately in order to coherently work
on your child’s behalf. A good advocate stays calm when tensions rise and a good advocate
can help you avoid the embarrassing blubbering.

5. Lawyers are expensive. We all imagine that all we have to do is threaten to sue and the
school district personnel will be shaking in their boots. It doesn’t work that way. When you
threaten to sue, they smile inside because they know that (a) they have lawyers on the payroll
and (b) you don’t. Lawyers are expensive both in terms of time and money. If you’re child is in
an inappropriate placement, can you afford to wait two years and pay twenty thousand dollars?

A good advocate can work quickly and can do so for a lot less money ­­ law degrees,
paralegals, and those leather office chairs are expensive! Even better, a good advocate can help
you negotiate more than the district is required to do under the law. Far more can be
accomplished in an IEP meeting than in a due process hearing.

For all those reasons, I knew I needed an advocate to help secure the correct setting for my daughter.
We were able to work with my team and find solutions to ensure she receives an appropriate education.
I also knew I couldn’t stand by while other parents tried to do it on their own and I decided to give up
all those waking hours so that I could train to become an advocate myself.

Our thanks to Dan Coggshall for authoring this guest blog

Dan has completed his course work with NSEAI (National Special Education Advocacy Institute), and is now interning with us here at Special Needs NJ

Have you been where he was? Lost and confused over the “ABC’s” of Special Education? Outnumbered by school personnel in an IEP meeting (just you against everyone free for that period)? Do you feel your son or daughter is not in the “best” possible environment or program for their “needs?” Do you need help navigating the murky waters of Special Education and your child’s diagnosis or disability?

Many say that a parent is the best advocate for their child. While this is true in many situations, in the IEP meeting this many times is NOT the case. Your emotions are in charge, they don’t understand the guilt, and mourning you are experiencing over the fact that you are even there! That your child is struggling and you feel it’s your fault. You’re to stressed over the 4-12 faces staring back at you to even be confident that you are hearing anything they are saying!

Don’t put yourself through another meeting like the one Dan has described, call for an advocate today! (973) 534-3402

You will receive a half hour consultation with an educational consultant, experienced in Special Education law and practices, who has assisted many families on this journey called the IEP (Individualized Educational Plan). We will hear your struggles, meet your child, review your evaluations and recommendations, formulate a plan, write letters to your CST (child study team), and hold your hand all the way through the process of obtaining the best possible placement for your child and their “Special Needs.”

specialneedsheader 2

(973) 534-3402

Click here to contact us for services

 

 

Worship Services for Special Needs

A WORSHIP SERVICE FOR THOSE CELEBRATING BEAUTIFUL AND SPIRITED CHILDREN WITH

SPECIAL NEEDS

 

Please join us for our Very Special Family Worship Service

November 23, 2014 at 2:00 PM

Christ children7

This is a joyous, musical and engaging communion service that lasts approximately ½ hour.

Children are celebrated and free to be themselves.

Lunch (including Gluten Free and Vegan options) will be served immediately following the November 23, 2014 service.

Hosted by

The Episcopal Church of the Atonement

(Between Broadway and Rosalie Street)

1-36 30th Street

Fair Lawn, NJ 07410

201-797-0760

Special Services the 2nd and 4th Sunday of every month

click here to visit our page www.atonement-fairlawn.org

Not accessible for the physically handicapped

Electric stair chair available

 

Please RSVP and let us know your dietary restrictions.  Bettylynnschweitzer@hotmail.com OR Betty Lynn: 732-289-5198.  We will do our best to accommodate your needs.

Dr. Seuss’s IEP

cat n hat 1  Dr. Seuss’s IEPAuthor Unknown

 

Do you like these IEP’s

I do not like these IEP’s

I do not like them, geeze Louise

We test, we check

We plan, we meet

But nothing ever seems complete

 

Would you, could you

Like this form?

 

I do not like the form I see

Not page 1, not 2, not 3

Another change

And brand new box

I think we all have lost our rocks

 

Could you all meet here or there?

 

We could not all meet here or there

We could not all fit anywhere!

Not in a room

Not in the hall

There seems to be no place at all!

 

Would you could you meet again?

 

I cannot meet again next week

No lunch, no prep

Please hear me speak

No not at dusk, no not at dawn

At 4 pm I should be gone.

 

 

cat n hat 2

Could you hear while all speak out?

Would you write the words they spout?

 

I could not hear, I would not write

This does not need to be a fight.

Sign here, date there

Mark this, check that

Beware the student ad-vo-cat(e)

 

You do not like them

So you say

Try again, try again!

And you may

 

Say!

 

I almost like these IEP’s!

I think I’ll write six thousand three.

And I will practice day and night

Until they say

“You’ve Got it Right!!”

 

 

dr_seuss_cat_in_the_hat_-_thing_1_2_and_3_triplets__1dbdc993

 

 

 

 

Let us show you  A Thing or 2…or 3!!
Call Special Needs NJ
for ALL you IEP needs
(973) 534-3402
Seasoned advocates and educational consultants to help you through the process.
or just email us your location and needs
specialneedsnj@hotmail.com

IEP HELP

IEP meeting
It’s IEP time! Where did I put those report cards? FAPE IDEA What was that teacher’s name? LRE Should we keep him in speech? IEE Don’t get caught in a rush, wondering what to discuss, not understanding a single word they say! Call: specialneedsheader.jpg Special Needs NJ…. NOW! 973-534-3402 Our experts can help you interpret those test sores, percentages, rankings etc… But more importantly; we know the law! If you’ve ever been afraid, intimidated, feel unsure, bullied, unheard, talked down to and think your child needs a better written, more individualized IEP? Don’t wait for the last-minute. This is your child’s education! Let’s get together, so this year you feel confident, prepared, educated, and not intimidated. Our advocates are ready and waiting to serve you and your child. Not only will we meet you and your child in the comfort of your own home, but we will accompany you to the meeting at your school. We want to help educate you about the education your child has a right to receive within your home community. Negotiate and work with school professionals to ensure your child gets the best possible education that will address his/her disability “needs.” And not simply pigeon-holed into a one size fits all model of what the school thinks is representative of a Free Appropriate Public Education (FAPE). Call NOW! 973-534-3402 for your FREE consult

HELP WANTED

HELP WANTED

Positions open for ABA therapists to perform ABA services in the home.

Make your own hours, good pay, Sussex, Morris, Warren counties NJ

independent contractor position, must have experience with special needs population

Please submit cover letter, and resume to specialneedsnj@hotmail.com

Subject line: Human Resources

What’s happening this weekend?

Saturday Feb. 22 at Montville Township Schools

Fun for the whole family

Purchase Your Harlem Wizard Tickets Today!

Come see the Harlem Wizards take on the Montville Superstars on February 22, 2014!
The Wizards will be playing the Montville Superstars which is a team made up of teachers and parents from Montville Township Schools. The Wizards are professional basketball players that demonstrate superb skill, comedy, and entertainment on the court. Also if you are in 4th grade or above and a student in Montville Township schools, get registered for the free throw championship that will take place at 6:15pm before the game. Download the flyer below. Come join the us for a fun filled night! See details below:

About the Wizard Game:


1) When: Saturday – February 22, 2014
2) Time: 7:00pm (Doors open at 6:30pm)
3) Where: Montville Township High School Gym
100 Horseneck Rd., Montville , NJ
4) Tickets: Advance Tickets – $15.00 and at the door $20.00
5) Tickets on Sale at the following locations:
a) Barry’s Montville Pharmacy – 185 Changebridge Rd., Montville
b) Montville Recreation – 195 Changebridge Rd., Montville
c) Online Tickets click below

PLEASE NOTE: Tickets will be on sale at the above places listed and via our website online until 12:00pm Saturday – February 22, 2014. Thereafter, you will have to purchase them at the door.

Federal Dyslexia Resolution 456:

 

Federal Dyslexia Resolution 456: 

 

 TIME TO ACTIVATE!

Res. 456, “Resolution on Dyslexia” presented by Rep.Bill Cassidy (R-LA) needs the support of at least 100 U.S. Congress members to bring it to a vote in the House

Education and the Workforce committee.

Please contact your representative and tell him or her to sign on to the

Resolution on Dyslexia, now!

Find your representative here: http://www.house.gov/representatives/find/

Sample letter here:

Dear Rep. ————

Rep. Bill Cassidy (R-LA) needs the support of at least 100 U.S. Congress members to bring to a vote  H.Res.456 in the House Education and the Workforce committee.  As one of your constituents concerned with the education of all of our children, I am counting on you to support this resolution.  

(Insert your personal story here, if you have one that you’d like to share.)

Rep. Cassidy’s Resolution recognizes each major element of dyslexia: its prevalence (1 in 5);  the cognitive and neurobiological bases; its unexpected nature and persistence; its profound impact on education and the critical need for action by schools.

Rep. Cassidy gets it and I hope that you do too.  The Bipartisan Dyslexia Caucus which he co-founded was a major step forward and now the Dyslexia Resolution brings light and understanding, and hopefully action, to ensuring that children who are dyslexic receive the understanding and evidence-based programs and accommodations that they deserve.  Please act now to support Resolution #456 – 

IEP Tips: How to prepare for the IEP meeting

The following are IEP tips and strategies designed to help you prepare for the meeting while developing a collaborative relationship  with your school  district. As a parent, hearing the words “IEP Meeting” might cause you feel nervous, overwhelmed or even experience a feeling of dread. We know from life, that if we are prepared, our anxiety levels go down.

IEP TIPS for a SUCCESSFUL MEETING:

1. Respond to the meeting notification and let them know you will be attending.   If you plan on bringing an outside friend, specialist or advocate, let the district know ahead of time. If you cannot attend, ask to reschedule.  Let the school know the meeting is important to you.

2. Bring all important documents to the meeting.  If you received a negative report card, progress report or if your child is having behavioral problems, bring these documents.   If you’ve recently seen a medical doctor or psychologist, you might ask the doctor to write some type of summary report that can be shared at the meeting.

3. You have a right to receive a copy of the assessment results ahead of time so you can preview them before the meeting.   You may also request a copy of the proposed IEP and the actual goals in advance so you can preview them and jot down questions you have.

 

4. Write down your questions, concerns and suggestions.  IEP meetings tend to be slightly rushed so the more prepared and organized you are the better chance that all your concerns and questions will be addressed.

5. You may visit possible program options prior to the meeting.  Ask for a visit to be arranged before the IEP meeting takes place.

6. You may tape record the meeting. Notify the case manager or special education teacher at least 24 hours in advance if you plan on doing this.

7. Be an equal partner in the IEP process:  Don’t silently sit there.   Ask questions, offer suggestions and bring ideas to the table. Remember, you are the voice of your child.

8. Ask for a copy of your rights n advance so you feel comfortable signing them when asked.

9.  If you are uncomfortable with the IEP plan or do not feel you’ve had enough time, don’t be afraid to ask for a continuation meeting. You do not have to sign the IEP!

You can say something like, “I really like many of the things we discussed today. I don’t feel ready to sign this yet, but I’m sure if we can continue this meeting we will be able to work through the remaining issues.”

10. Remember, you can agree to parts of the plan without agreeing to the entire IEP. The parts you’ve agreed on will be implemented while you continue to work on the remaining issues.

11.  IDEA states that you can ask to take the IEP home for further review before you sign it. Some parents find it overwhelming or feel too rushed during the actual meeting to make a final decision.

CARING FOR THE CAREGIVER:

Caring for the Caregiver 

 

Changing the course of your child’s life with special needs can be a very rewarding experience. You are making an enormous difference in his or her life. To make it happen, you need to take care of yourself. Take a moment to answer these questions: Where does your support and strength come from? How are you really doing? Do you need to cry? Complain? Scream? Would you like some help but don’t know who to ask? 

Remember that if you want to take the best possible care of your child, you must first take the best possible care of yourself.

Parents often fail to evaluate their own sources of strength, coping skills, or emotional attitudes. You may be so busy meeting the needs of your child that you don’t allow yourself time to relax, cry, or simply think. You may wait until you are so exhausted or 
stressed out that you can barely carry on before you consider your own needs. Reaching this point is bad for you and for your family. 

You may feel that your child needs you right now, more than ever. Your all to familiar  “to do” list may be what is driving you forward right now. Or, you may feel completely overwhelmed and not know where to start. There is no single way to cope. Each family is unique and deals with stressful situations differently. Getting your child started in treatment will help you feel better. Acknowledging the emotional impact of having a child with special needs, and taking care of yourself during this stressful period will help prepare you for the challenges ahead. Many disabilities are pervasive, multi-faceted disorder’s. They will not only change the way that you look at your child, they will change the way you look at the world. As some parents may tell you, you may be a better person for it. The love and hope that you have for your child is probably stronger than you realize. 

Here are some tips from parents who have experienced what you are going through: 

Get going. Getting your child started in treatment will help. There are many details you will be managing in an intensive treatment program, especially if it is based in your home. If you know your child is engaged in meaningful activities, you will be more able to focus on moving forward. It may also free up some of your time so you can educate yourself, advocate for your child, and take care of yourself so that you can keep going. 

Ask for help. Asking for help can be very difficult, especially at first. Don’t hesitate to use whatever support is available to you. People around you may want to help, but may not know how. Is there someone who can take your other kids somewhere for an afternoon? Or cook dinner for your family one night so that you can spend the time learning: Can they pick up a few things for you at the store or fold a load of laundry? Can they let other people know you are going through a difficult time and could use a hand? 

Talk to someone. Everyone needs someone to talk to. Let someone know what you are going through and how you feel. Someone who just listens can be a great source of strength. So many parents concentrate on the therapies their child needs and ignore or deny the fact that they made need therapy too!  If you can’t get out of the house, use the phone to call a friend.

“At my support group I met a group of women who were juggling the same things I am. It felt so good not to feel like I was from another planet!”

Consider joining a support group. It may be helpful to listen or talk to people who have been or are going through a similar experience. Support groups can be great sources for information about what services are available in your area and who provides them. You may have to try more than one to find a group that feels right to you. You may find you aren’t a “support group kind of person.” For many parents in your situation, support groups provide valuable hope, comfort and encouragement. 

                                                             Links to local Family Services coming soon

Try to take a break. If you can, allow yourself to take some time away, even if it is only a few minutes to take a walk. If it’s possible, getting out to a movie, going shopping, or visiting a friend can make a world of difference. If you feel guilty about taking a break, try to remind yourself that it will help you to be renewed for the things you need to do when you get back. Try to get some rest. If you are getting regular sleep, you will be better prepared to make good decisions, be more patient with your child and deal with the stress in your life. 

Consider keeping a journal. Louise DeSalvo, in Writing as a Way of Healing, notes that studies have shown that “writing that describes traumatic events and our deepest thoughts and feelings about them is linked with improved immune function, improved emotional and physical health,” and positive behavioral changes. Some parents have found that journaling is a helpful tool for keeping track of their children’s progress, what’s working and what isn’t. 

Be mindful of the time you spend on the Internet. The Internet will be one of the most important tools you have for learning what you need to know about the “special need/diagnosis,”  and how to help your child. 

Unfortunately, there is more information on the web than any of us have time to read in a lifetime. There may also be a lot of misinformation. Right now, while you are trying to make the most of every minute, keep an eye on the clock and frequently ask yourself these important questions: 
• Is what I’m reading right now very likely to be relevant to my child? 
• Is it new information? 
• Is it helpful? 
• Is it from a reliable source? 
Sometimes, the time you spend on the Internet will be incredibly valuable. Other times, it may be better for you and your child if you use that time to take care of yourself. 

Hire an advocate: Simply hiring an advocate can be immensely freeing; having someone else’s perspective, understanding, and on call expertise can eliminate insurmountable stress. Advocates are wonderful, well-educated, and very caring people. Their goal is to educate you the parent, the school, and the child to understand better exactly what is best for your child’s academic, social, behavioral, program needs while taking the burden off your hands..

Need help?

Want advice?

Call Special Needs NJ. LLP                      (973) 534-3402

or email: specialneedsnj@hotmail.com 

 

 

 

Shared by http://www.autismspeaks.org/what-autism/autism-your-family

Executive Functioning difficulties/disorder/disability? What?

Executive function is a set of mental processes that helps connect past experience with present action. People use it to perform activities such as planning, organizing, strategizing, paying attention to and remembering details, and managing time and space.

In school, at home or at work, we use executive functioning to:

  • Make plans
  • Keep track of time and finish work on time
  • Keep track of more than one thing at once
  • Meaningfully include past knowledge in discussions
  • Evaluate ideas and reflect on our work
  • Change our minds and make mid-course corrections while thinking,  reading and writing
  • Ask for help or seek more information when we need it
  • Engage in group dynamics
  • Wait to speak until we’re called on

A student may have problems with executive function when he or she has trouble:

  • Planning projects
  • Comprehending how much time a project will take to complete
  • Telling stories (verbally or in writing), struggling to communicate details in an organized, sequential manner
  • Memorizing and retrieving information from memory
  • Initiating activities or tasks, or generating ideas independently
  • Retaining information while doing something with it, for example, remembering a phone number while dialing

What to do if you suspect you or your child is having executive functioning problems:

There are many effective strategies to help with executive function challenges:
General Strategies

  • Take step-by-step approaches to work; rely on visual organizational aids.
  • Use tools like time organizers, computers or watches with alarms.
  • Prepare visual schedules and review them several times a day.
  • Ask for written directions with oral instructions whenever possible.
  • Plan and structure transition times and shifts in activities.

Managing Time

  • Create checklists and “to do” lists, estimating how long tasks will take.
  • Break long assignments into chunks and assign time frames for completing each chunk.
  • Use visual calendars at to keep track of long-term assignments, due dates, chores and activities.
  • Use management software such as the Franklin Day Planner, Palm Pilot or Lotus Organizer.
  • Be sure to write the due date on top of each assignment.

Managing Space and Materials

  • Organize work space.
  • Minimize clutter.
  • Consider having separate work areas with complete sets of supplies for different activities.
  • Schedule a weekly time to clean and organize the work space.

Managing Work

  • Make a checklist for getting through assignments. For example, a student’s checklist could include such items as: get out pencil and paper; put name on paper; put due date on paper; read directions; etc.
  • Meet with a teacher or supervisor on a regular basis to review work; troubleshoot problems.

For specific help for your family member suffering from Executive functioning disorders/problems, contact Special Needs NJ (973) 534-3402