31. Paying It Forward …

Paying it forward….

“I do not pretend to give such a deed; I only lend it to you.  When you meet with another honest Man in similar Distress, you must pay me by lending this Sum to him; enjoining him to discharge the Debt by a like operation, when he shall be able, and shall meet with another opportunity.  I hope it may thus go thro’ many hands, before it meets with a Knave that will stop its Progress. This is a trick of mine for doing a deal of good with a little money.”  (Described by Benjamin Franklin, in a letter to Benjamin Webb dated April 25, 1784)

When I first experienced the dilemma of my son’s exclusion and the desperate search forpay-it-forward (1) help, I will never forget that feeling of finding that lifeline of information.  I was able to successfully advocate for the needs of my own son and learn the process within the first year.   I didn’t need to remain involved helping others.  It was a choice I made to pay it forward – to keep others from unnecessarily going through what I did because of lack of information.  You can see from the quote above this is not a new concept but rather something people have been doing for centuries.

I know that I have helped many following this simple concept just as so many before me did also.  It takes very little to pass on a piece of information and a word of encouragement to another going through the same things that you are or already have experienced.  That information that, to you, seems common place may be a major revelation to another just starting out on this path.

I continue to come full circle to the commonality we share as parents of children with disabilities that others will never be able to understand. To fully understand what parents of children with disabilities experience you have to be a parent of a child with a disability. Whenever possible take an opportunity to share information with others about your child’s disability and the lessons you have learned.

I am becoming increasingly aware of my age these days approaching the big 60 and the inevitable changing of the guard.  For decades now I have paid it forward and then some. It is so difficult to let go but then it is past my time to lead and time for the next generation to step forward.  Where are these heroes?  If you are reading this – step to the closest mirror to look for the answer.  You can be that answer through your involvement.

I have often used the analogy of passing on of information from one parent of a child with a disability to the next parent, generation after generation as the Amway of parent education. The outcomes are similar in establishing a network of others to which you pass on a product.  The difference is the product you are passing on is experience and information.  The product is tailored to the individual need and success is measured by the amount of product shared.  Parents are the best source of resources and information.

I think one of the biggest barriers for parents is our failure to put things in a simplified manner when sharing information.  I have caught myself using acronyms as fluently as professionals and had to stop and check myself from continuing.  The really sad thing is that so many are so overwhelmed by a process that really isn’t that difficult to master.  It is actually simplistic in nature if you look at what truly needs to happen.

Tracking progress and establishing how to measure that progress are the keys.  We become so engrossed trying to understand methodologies that we miss that there are no baselines from which to track the progress and without baselines there is no way to determine if what is being done is working.

Your success and that of your child will be commensurate to your knowledge of procedural process, your willingness to be involved, and the ability to collaborate with your school system.

Understanding that when we track progress and find we are not on track to reach mastery of any goal then we ask for more or different.  The basic concepts are not new and have already been tested in courts. There is no need for further interpretation and once you have mastered the process it is repetitive.

The important thing, and probably the hardest to effectively impact systemic change, is to continue to remain involved and help others once you own individual needs are met.  We all have a tendency to want to have a life and to – at least for a brief respite – ignore the lifelong commitment to disability and its everyday impact on our lives.  Ultimately this complacency will be short lived once you realize that your constant monitoring is needed to achieve satisfactory educational gains and failure to do so results in having to exert twice the effort to regain the ground lost.  A steady maintenance of effort produces the best outcome long term.  Embracing the culture and sharing the wealth as you proceed forward with your life’s experience will help not only in your coping with your journey, but ultimately make the journey easier for the next person following in your footsteps.

TeacherWhat necessitates this involvement by so many?  It is the reality of the enormity of this task due to the fact that it can never be accomplished.  No matter how hard we try even as you read this another child is being identified. There is no possible end to the task of trying to provide the information that parents need when they need it.  For two decades I have tried to swim against this current of need and reach as many as possible in as many different ways as I could.  So what is the solution?

I know that it will not happen in my lifetime but maybe in yours.  Just as in any civil rights movement from women’s rights to racial inequality the struggle will continue as long as one person feels it is acceptable to look the other way rather than take a stand for what is right.

So the answer lies within each of us to make the choice to think of others, and not just ourselves, and make a difference in the life of someone else.

 

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30. Why Advocating for Your Children Yourself is Always the Best Option.

Creating dependencies on others to do what all parents are capable of doing for themselves is such a disservice to families.   Is the person calling themselves a parent advocate   qualified to act on behalf of others?

IEP meeting4Everyone should be an advocate for children but representing families requires a totally different set of skills, training and expertise.  Not being qualified to do so  leads to the passing  on of  incorrect or incomplete information to others and can often cause  harm by delaying an outcome required by a set process or  being totally useless to achieve a needed service.  What advocates do and how they do it directly impacts the lives of families.  These well-meaning efforts to help others can often cause more harm than they do good.  It is not enough to apply procedural process but often how it is done that can also have an equal impact on outcomes.

Looking at the broader impact can temper how we react to those we are seeking services from.  One of the most valuable lessons taught me by my mentor was that in any form of debate always allow your opponent the ability to save face.  It is difficult during emotionally charged confrontations not to want to punish the opponent when prevailing.  You will find yourself interacting with the same entities at another date so it is always best not to close doors that you have a need to pass through again.

What qualifies a person to be an advocate and act on behalf of others, sometimes requesting fees to do so?   Unfortunately there is no requirement of certification beyond that person’s self-proclaimed proficiency which most often is only that they too are a parent of a child with a disability.  This can often lead to the assumption that a practice that works with one child with a particular disability will work with all children with the same disability.   No two children are alike and the reason the IEP is individualized in the first place.  Based on their personal experience and previous interaction they may also bring  negative history and adversarial working relationships with the team of individuals that will eventually, after all is said and done, be working with you  to serve your child.

Over the course of my career teaching parents self-advocacy skills, I was always quick to point out that you need to become your child’s advocate because only you know what is best for your child as only you know your child best.

There is nothing special about advocates beyond the time they took to learn procedural process, and their personal experience utilizing it.  I have taught thousands of parents that process so I know that the majority of parents can learn to become effective advocates.  I have encountered only a minuscule group, in decades of teaching, that for some reason were incapable of doing this for themselves.  It is not as difficult as most would have you believe it is.  Learn to do the drill, the same repetitive procedural process once identified as eligible from age three  until  your child  exits  with a standard diploma or ages out at twenty two, regardless of what type of disability a child has.

I believe there needs to be some type of required national certification established for paid IEP buttondisability advocates and certainly recommended for those who don’t charge.  This would require an initial certification and periodic re-certification to retain an endorsement. I think if done properly it would give families access to quality representation resulting in better outcomes and reduction in school /parent conflicts. Perhaps a group like Council of Parent Attorneys and Advocates (COPAA) or Parent Centers (Parent Center Network)  could establish the levels of certification.

When it comes to representation of others being an income, there is a fine line to be walked as to who’s benefitting from continued conflict and are they really acting as an attorney.

I do understand the need is greater than the resource when it comes to helping parents but buyer beware as that service can also harm your child and you as parents.  The best thing to do is to learn the procedural process and become that advocate yourself.  Not  only will this allow you to act on your child’s behalf without requiring anyone else to do it, but it will also give you the skills necessary to teach your child how to be their own advocate when that time  comes.

mirrorThis is why when asked “where can I find an advocate for my child”, my response will always be “find the closest mirror and have a good look” one else to do it, but will also give you the skills necessary to teach your child how to be their own advocate when that time  comes.

 

 

 

 

Posted in Advocacy, Dads, Disability, Emotion, Fathers, Florida, IDEA Information, IEPs, Inclusion, Least Restrictive Environment, Parent Involvement, Parents Training Parents, Public School, Self Determination, Special Education | Tagged , , , , , , | 7 Comments

29. Disability Rights, Culture and the Disability Community

playground kids What is disability culture?   It is interesting to note the overall willingness of the disability community, which includes individuals with disabilities and their families, to initially embrace any and all regardless of the type of disability.  Once indoctrinated however there are many different categories one is placed into based on the type of the disability, the severity of the disability and the prevalence of the disability.  As you go deeper into these differences we can really begin to see the flaws in our ability to advocate as a unified entity.

I have often wondered why, with the prevalence of disability in today’s society, we do not have a greater voice in what happens to us and to our children. In my years of sustaining parent networks I have seen the absolute strength and power that can happen when all focus on the same issues.  So much positive change happens with that unity, laws are changed, societal access achieved, corporate apologies, boycotts of products and services. These brief flashes of absolute unity have shown me what can happen when commonality of focus and unity is achieved.

Yet that same strength is our greatest weakness at times due to the unwillingness to focus on the big picture as a whole rather than just what impacts me and mine.

I must say that this disability experience has provided me access to such a diversity of individuals that otherwise I would have had no reason to interact with, and that has enriched my life considerably.  There is a sense of understanding and belonging between parents that are experiencing this overwhelming process that is unique.  One fact of disability is the totally non-discriminatory fashion by which it affects the lives of families.  With no preparation, regard for economic status, race, gender, age, or personal plans, disability presents itself at your doorstep and refuses to be turned away.

Too many times we do not embrace, soon enough, the concept of self-advocacy for our student at IEPchildren.  It is a lifelong lesson that starts as soon as possible and not something we introduce at graduation. This is a skill they will need for the rest of their lives and needs to be something acquired from the beginning and nurtured throughout a child’s development into adulthood.  The real difficulty here lies in the overpowering desire to protect and shelter our children from the real world and that may be the greatest disservice of all.  As much as we want our children to succeed we must also give them the opportunity to fail and to learn from those failures because that is life and how we all learn.  No decisions made ‘about me without me’ is something we all expect so why should it be different for individuals with disabilities.   What is self-determination?

I keep looking with hope for that next generation of disability leaders that will step up and move forward working to end the injustices the individuals with disabilities still continue to endure.  Where are those wonderful champions?  I wait for that selfless person who will be the difference for all.  I have accepted that, despite all of my efforts, equality in education for children with disabilities will not happen in my lifetime.  It has always been my belief that if the differences in children are embraced, accepted, and celebrated, then they remain that way through adulthood and that simplistic concept would affect societal change.  I still hold that belief to be true.

Does it really take the radical actions of groups such as ADAPT (Free Our People) had to do to shame the status quo, through public disclosure, into doing what is the right thing in the first place?

It is not a matter of if disability will impact your life but just a matter of when it will.  I certainly never expected it to impact myself or my child but then it did.  I had no control over these changes that occurred in my life but I did have a choice as to how I reacted to the change.  At some point in life if you have not yet reached those crossroads you most certainly will.  When you reach this crossroad it would be my hope that you would chose the path for change that includes all and work toward systemic change to benefit everyone (all means all) and not just a small group.

The popular belief is that protests arise when large numbers of individuals are fed up with the injustices of their lives.  Actually, that rarely occurs.  Rather, people rise up when they sense a whiff of hope.  (Frank Bowe Ragged Edge – Online)

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28. Collaboration! It’s The Right Thing To Do!

Imagine an IEP meeting where everyone is in agreement.  A meeting where the only time money is mentioned is when the group thanks you for buying the snacks you brought with you.  Imagine a meeting where you feel good about your child being part of the school he or she is attending, and grateful for all the professionals that are working with your child. Sound like a fairy tale to you?  Well from my own experience I can say it can be a reality.

IEP meeting2What it takes to make that happen may have to start with your approach to the meetings themselves and where your first contact came from when seeking information about the process.

Parents seek the information initially to be able to understand what it is we have to do now that we are parents of children with disabilities.

Unfortunately there is so much negative adversarial history that gets passed along with that information.  Procuring services for your child is dependent on following the procedural process and nothing else. (10 Basic Steps in Special Education)

Allowing yourself to become emotional only hinders the process and doesn’t benefit anyone.

IDEA has in place safeguards to the procedural process, and those are what you use if you disagree.  (Introduction to Procedural Safeguards)   When utilizing them, there is absolutely no reason not to be nice and respectful toward others.

Venting your frustrations on others may make you feel better but it really serves no purpose on outcomes, but rather hinders them.

It is time to stop fighting and bickering and collaborate, remaining child focused.  The very first thing is to learn the procedural process set forth in federal law and if you believe it is not being followed then simply exercise your procedural safeguards, as is their purpose, and move on.

It is in your best interest, and that of your child, to build strong positive relationships with your child’s teachers, school and school District.  (Dispute Resolution in Special Education)   IEP meetings are held at least once per year.  (All About IEP)   For your child to be successful requires a greater degree of involvement than just coming to a meeting once a year.  (Encouraging the Involvement of Parents)

I am aware of the rigors faced by parents just trying to get through from day to day, and how difficult that can be.  If you can find the time to be involved in as many aspects of your child’s school as possible the rewards come back tenfold in the gains your child will make and the personal satisfaction you will have of being part of the whole community.   (The Impact of Parent Involvement)

Accept the fact that without your presence in the decision making process you are not going to be a consideration.  Although unplanned and incidental the actions you take on behalf of your child will also impact others as well.  This makes collaboration not only the best way to achieve the desired outcomes, but also the best legacy you can leave for those coming behind you.   (Dispute Resolution Resources)

Collaboration on all levels in a positive fashion brings on long lasting change for all children.  When you are identifying needs you are also looking at resources available to create solutions.  Become part of that positive change for children by participating year round in all educational aspects within a school system.  For change to occur you have to change the way people think starting with yourself.

I have long stated that the single largest untapped resources in public education are IEP meeting3parents of children with disabilities

Public schools are what we make them and your involvement as a parent will be the catalyst to keep public education alive. There is a growing trend toward privatization and specialization in education.  I feel that if some had their way once a year you would receive a check for your free education and be required to go forth and broker those services.  It would be nice if the world and life in general was compartmentalized in this fashion, but it isn’t.

Public schools represent the diversity of the community in which you live. The schools are where we acquire the fundamental building blocks for participation in society.  It is where we learn to socially interact and coexist with tolerances.  Purposeful segregation denies any opportunity to foster tolerances and acceptance in a class room, in a school, or in a community.

Be the difference for positive change for everyone and become involved!

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27. Fathers As Advocates

I have always prided myself in the fact that from the very beginning I always tried to include all in my efforts to advocate – all disabilities, races, languages and genders.  I have seen the growth and inclusionary practice in all these areas but the last one.  Fathers still remain an afterthought when considerations are made.  I am consistent in encouraging father participation but after twenty years I am still looking for fathers to take the lead in advocating for all children alongside the continued efforts of mothers.  I am seeing individual efforts in advocacy but yet to see a systemic approach taken by fathers on behalf of all children or men assuming the roles of leadership within the parent disability movement..

SPECIAL EDUCATION AND THE INVISIBLE FATHER

Why can’t Dad make the IEP meeting, I refer to this as the “Invisible Father”.

 The first time I experienced “Invisible Father” was in the physician’s office.  Although I Father-and-childwas the primary caregiver for my children, the physician automatically directed questions to their mother –  despite the fact there was another parent less than six feet away.  As a father I just became invisible.  This is a standard stereotypical response to including fathers in all aspects of child rearing.

Another example is dealing with school systems.  IEP meetings are at times most fathers cannot attend and information is not as readily available to men as it is to women, so the role usually falls to mothers to deal with trying to procure an education for the child. I believe that can and needs to change.

Fathers I have talked with are willing to be involved but have no information on how to, or have been discouraged from participating in the first place.  Without the information needed to participate in the IEP meetings anyone would be uncomfortable participating in the meetings. Why would that be different for fathers?   Despite myths circulating otherwise, fathers can learn to be effective advocates for their children with disabilities.   Both parents have to participate as partners in the learning process to be the most effective advocates for the child.  When given the opportunity and the resources most fathers eagerly participate.

Educational advocacy and the education field in general are female dominated.   If we then combine the two the chances of seeing involved fathers of children with disabilities participating in educational decisions and meetings are slim unless there is an effort to include them. (Fathers and Children With Disabilities

When a parent remarries or develops a new relationship, often the stepfather or significant other finds himself in an arena with absolutely no idea of disability and will experience the cycles of denial, acceptance and finally a readiness to learn.  (The Natural Emotional Cycle for Parents of a Child With a Disability)

The entire process, from the length of an agency day with no flexibility for working fathers – to seeming unwillingness to be considered a necessary component in a child’s education and development are barriers to father participation.  Tradition has been the invisible father in special education.

If we look at training available to parents, it is obvious that it has been developed by mothers to target other mothers.  We need to find more creative methods to encourage participation of fathers in the education of children with special needs.

SOME SIMPLE STEPS CAN INCREASE FATHER INVOLVEMENT.portrait of a father with his son (10-14) and daughter (8-10)

  • For effective change to happen for fathers we have to change the way we think about them.   (The Changing World of the Modern Day Father.)
  •  This will require the rejection of preconceived labeling and stereotyping and the acceptance that fathers are not replaceable family parts.  (MAMA SAYS: A National Survey of Mothers’ Attitudes on Fathering)
  • Seek input from fathers from the initial diagnosis.  Stress the importance of father participation in all aspects of the early development of the child.
  • Acknowledge that fathers need to participate in school meetings and that it is a shared responsibility.  This can be accomplished by encouraging mothers to take IEP information home to discuss with fathers before making any  final decisions and to schedule meetings so fathers have an opportunity to attend, specifying the need for both parents to attend whenever feasible.  (Parental Right to Participate in Meetings)
  • Develop training materials that are more gender neutral.  Most men are uncomfortable and sometimes intimidated by large numbers of women and the activities presently used in training parents.  Recognize the diversity in gender learning styles as readily as personalities, ethnicity, and culture.  Less formal settings are more comfortable for fathers and conducive to participation.  Fathers are outcome based and need a consequence to validate participation.  (Learning Styles and Gender)
  • Whenever possible, encourage fathers to talk to other fathers.  Positive male role models are as important at forty as they are at age six.  I have met fathers who have accepted the role of advocate and became quite adept at it.  (Father’s Faces)  My hat goes off to these guys who, despite any barriers, put their child first and found the time to become great men.
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26. Mr. Hawke’s Top Ten

top-10Many years ago I created what I call Mr. Hawke’s top ten. I think they still hold true today and felt compelled to share them once again.  Reflections of the ESE Policeman

1) The first step of the journey requires dealing with a myriad of emotions one experiences when becoming the parent of a child with a disability.  These strong emotions never go away. They lie just beneath the skin and can emerge at any given moment. Finding a way to cope with and control them is critical in achieving a successful outcome.

When you understand that you are not alone, and there are so many others that have already experienced what you are going through, and can share with you, then the first steps on a very long road have been taken.  Generally emotions manifest themselves in two ways, sorrow or anger.  Emotions are a necessary part of coping with a disability, but emotional outbursts that create adversarial climates are counterproductive to acquiring needed services. The process must become business.  Non‐emotional, clearly documented, collaborative business is what produces the desired child‐focused outcome.

2) Acquire the knowledge needed to be able to participate meaningfully in the business process.

In knowledge there is power, and in unity, strength. You cannot play the game if you do not know the rules, and regardless of the type of disability, we all play by the same rules. These rules are foremost, federal laws, and secondly, state laws with district policies, and lastly, all must be consistent with federal law.  You must know the rules, but learning when and how to practically apply them produces the desired outcome.  Which laws do you use and what procedural safeguards do you use?  Do you apply individually, or to policy?

3) Find the path of least resistance using procedural process to gain the sought‐after outcome for one child.

(Individually, I always looked at the path of least resistance, using procedural process to gain the sought‐after outcome for one child.)  Applying the law to policies and practices brings system changes for all children…written or unwritten, spoken or unspoken. If it is something that it is routinely practiced, it is policy and must be consistent with federal law. When re-authorization of the laws occur parental rights slowly get chipped away, making it harder and harder to force system change.

4) Build long‐lasting effective change by being proactive and working collaboratively.

Being collaborative and proactive (rather than adversarial and reactive) produces long lasting effective change.  Parents and professionals working together provide the best outcomes for children. Your actions open or close doors for all those who come behind you.

5) Information is the change‐agent, and dissemination of information to any and all is the key.

Collaboration does not mean compromising the integrity of federal laws.  It does mean working together toward a common goal, resulting in the maximum usage of pooled resources. (Information is the change agent and dissemination of information to any and all is the key.) Developing networks to sustain information dissemination will assure the continuation of future system changes. Change is unsettling, but necessary for growth.  To make lasting changes, it requires changing the way people think.

6) Engage people in disability advocacy by showing them that the only thing separating anyone from disability is time.

Unfortunately, until disability impacts you or your family, civil rights for people with disabilities is not a high priority in society or on bureaucratic lists.  It has always been, and still remains, the role of parents of children with disabilities, or individuals with disabilities themselves, to pursue equality and access to basic civil rights others take for granted.  The single largest barrier for persons with disabilities is persons without disabilities.

7) For clear perspective, focus on three things: that your child be gainfully employed, live independently, and pursue a quality of life of his own determination.

Focusing on three things from the beginning brings things into a clearer perspective for a parent. I wanted my son to be gainfully employed, live independently, and pursue a quality of life of his own determination.  This simple premise was the catalyst for how I determined my course of action on behalf of my son, and my focus when advocating for systemic change.  I achieved this for my son and continue teaching others with those three things foremost in mind.  I began seeking an inclusive classroom, then inclusive schools, and now, an inclusive community.  I have seen the first two become reality.  The last still remains elusive, but hope continues that some day even it may be accomplished.  Inclusion in all things from the beginning is the precursor to being accepted as a part of the whole community.  Segregation and isolation will become a life sentence.

8) You are a stakeholder and need to be at the table. 

Public schools are what we make them.  Our involvement as parents from supporting the classroom teacher to becoming part of school advisories is necessary so that we remain a consideration and our children have a voice when policies and practices are developed. Without your involvement that voice is lost.  That voice must be heard not only in the schools, but on state and federal levels.

Public schools represent the diversity of the community in which you live.  The schools are where we acquire the fundamental building blocks for participation in society.  It is where we learn to socially interact and coexist with tolerances.  Purposeful segregation denies any opportunity to foster tolerances and acceptance in a class room, in a school, or in a community.

9) Define yourself as a child advocate.

Webster defines an advocate as one who speaks for others.  I cringe when I hear someone introduce themselves as a parent advocate.  I would agree to the term “civil rights activist” or “child advocate”.  Parents are advocates for their own children and need to embrace that responsibility.  Creating dependencies on others to make decisions for you will not achieve the outcome necessary for success.  Learning the process and applying it individually will.  Only you know what is best for your child because only you know your child best.

10) Remember that you are role modeling for your child how to be a self-advocate. 

Self‐ advocacy will not only accomplish what is needed, but establishes something your child will role model and use when they seek independence as adults, leaving the entitlements of public schools and into the eligibility of community living.

Opportunities for participation often must be created if they do not exist.  Equal access is not a privilege – it is a right, and the need is not to create separate, special access, but rather create equal access to all existing opportunities community wide.

This is a grassroots, disability, civil rights movement, and for change to happen it cannot be disability specific, and must include disability groups combined, working toward civil rights for all.

I have always looked at what is sustainable for others coming behind when focusing my efforts. I understand the difference one individual can make.  I have seen much change in my community over the years as a result of my willingness to step forward and get involved.  My goal is that when the time comes for others to step forward to become parent leaders they will have all the information needed to make a difference in their own lives and in the lives of others.  I will not see equality for persons with disabilities in my lifetime.  With vigilance it may happen in yours.  When I am gone, it is my wish for my legacy to be “a father who stood up for children with disabilities and made a difference”.

Until that day, I will continue to share information, encourage others to become involved, and remain watching “like a Hawke”.

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25. Sometimes Parents Feel Excluded Too!

Over a prolonged period of time the relationship between schools and parents of children with disabilities has become adversarial.  I believe this continues because some parents pass along the negative history they experienced to others, convincing them the only way to get services is to fight for them.  Actually that advice couldn’t be farther from the truth. It is working together collaboratively that produces the positive and lasting outcomes that we seek as parents.

IEP meetingWhen parents are meaningfully involved from the beginning everyone benefits. (Encouraging Parent Involvement)  For that to happen parents need information and training, and herein lies the dilemma.  School districts must want to become compliant and give parents all of the information not just bits and pieces. Districts are required to have parental involvement through indicator eight.  (Indicator 8 – Parent Involvement)   The only way to move beyond this quandary of conflict is for parents to get all the information at the time of the first evaluation from the school their child attends.  I believe most parents feel that it is a partnership and want to work with their child’s school.  It is more difficult if you are the parent of a child with a disability based on the prevalence of a two tier educational system of special segregated education and inclusive regular education rather than one system that teaches all. This creates additional conflict when not only do I feel my child is being treated to a complete different set of standards, but then consequently I also as a parent am treated differently.   I too am excluded from full participation in school activities, planning, and advisories.

The initial reaction is hurtful but then the anger soon follows.  Exclusionary practices not only effect children with disabilities but their parents as well.  Truth be told, this is where the lingering animosity exists.  Feeling that, for some reason, I am not as good or as important because my child has a disability.  Why must I form a group with other parents that have “those kids” rather than being part of a group of parents who have children in the same school?

Why when disability is such a normal part of life do we need to segregate and isolate anything that is remotely different than what would be perceived as the norm?

This practice of being, different or special or any other label is wrong.  I don’t want special, or segregated, or different.  I want equal access to all things from the beginning and not as a last minute after thought.  It has been my experience that when parents are provided the resources necessary to enable themselves to have a full understanding of procedural processes they will become collaborative partners.  Without the access to information mistrust and confusion result in ongoing conflict.  With knowledge comes acceptance and understanding.  Having that knowledge available to all in the schools our children attend together, not only for the parents of children with disabilities but for the parents whose children do not have disabilities will help foster acceptance.

Including children in the least restrictive environment (Least Restrictive Environment includedQ&A) allows other children to interact with, understand and accept the differences Purposeful segregation does not foster this acceptance.

It does take effort to turn your swords into plowshares but it can be done as evidenced by what we have been able to accomplish in my own community. (Sharing the Commitment Mini Conference)  We collaborate together, parents, schools and community with a focus on enhancing and expanding opportunities for children with disabilities.

People fear what they do not understand. Creating acceptance from the beginning increases the opportunities for acceptance as adults.

Posted in Advocacy, Inclusion, Least Restrictive Environment, Parent Involvement, Public School, Special Education | Tagged , , , , , , , , | 2 Comments

24. On Site Information, Resources, Training and Support

It was now time to set the plan in motion.

ArnoldSNAC1Initially we met monthly throughout the school year.  I selected three staff we called PEERs, Parent Educator Exception Resources, from the pool of the training teams.  Two of those PEERs were bilingual, to meet the need of our high rate of Spanish speaking parents, all were parents of children with disabilities.  We also selected three teachers as PEERs. These six parents and teachers PEERs would hold seats on the Advisory Council and act as resource to parents and educators district wide.  The Advisory focused on enhancing and expanding services for children and adults with disabilities in our schools and community.  We decided the first step in making this happen was to provide information to parents and professionals giving all the access to the same materials.  Schools were given an opportunity to be provided a parent/professional school library valued at $1600.00 and middle and high schools received an additional $600.00 for transition specific materials. (Collier County Transition Tool Kit)

I asked the question: ”Why should parents of children with disabilities have to go anywhere other than the school their child attends to get the information they need?”

There are two ways you learn that your child has a disability.  One is a medical model where a physician informs you that there is a disability and the second is when the school system informs you that your child is not developing at the same rate as his/her peers.   In focusing where information (Parenting a Child With Special Needs) should be made available to parents I realized that parents would be spending more time in their children’s schools than anywhere else.  What better place then, to house a sustainable source of information?

Most school districts applied the same approach to information as they do to serving children, put the information in one place and then make parents come there.  Although clustering is convenient for administrators, and certainly more cost effective, it doesn’t meet the needs of the parents nor is it conducive to having parents come into the school to get the information from the professionals that teach their child. What we chose instead was placing information site based for parents and professionals to utilize.

General education teachers get a bare minimum of instruction on special the education process when earning a general education teaching degree.  Making the materials available to all in the school was the approach we chose.  The selection of resource materials also reflected that need in being on a level for parents and educators to use fostering site based staff development.

The selection of the original materials was referred to a subcommittee composed of parents and teachers. The materials were approved by the Advisory and we began to purchase the library materials. (Parent/Staff Libraries for Students With Disabilities)  The cost was somewhat prohibitive and restricted us to only placing five libraries per year in schools.  To qualify to receive the library schools first had to schedule and conduct a parent training.  (Introduction to Special Education)

This project took ten years to complete but now ALL schools in the district have a sustainable resource for parents and professionals that is easily updated.  An example was the release of the “Building the Legacy” training materials.  We simply provided all schools with copies of the CDs to add to their libraries.  We did the same with CADRE materials.  (The National Center on Dispute Resolution in Special Education)  Any resource that was available could now be placed in every school with minimum effort.  I continued to add information to the website as well keeping the information as current as possible.

We wrote for a grant and were able to purchase two Arts For All kits housed in the schools but available for community agencies to borrow as well. (Zot Artz)

We developed a brochure in three languages to provide parents an explanation of who we are and what we do.  (Sharing the Commitment Brochures)  In other discussions of how parents would find us it was decided that we would add the information to the IEP notice form.  If it was your first IEP or last you would have access to the information on the notice of meeting.  (Sample Notice Form)   As each need was identified by our Advisory it was referred to subcommittee and the solution then presented at the next meeting.  We identified a need for sensitivity training and the solution was a train the trainer model focused on fourth graders.  (Special… Just Like You)   We then began to look at how schools would  be able to utilize this site based information to reach parents.  (Establishing Site-Based Resource Parents)   A letter was sent to each building principal asking them to nominate a parent approved by their School Advisory Council to act as the resource for other parents in their schools and, using the train the trainer model, provide training for the parents in each school.  We provided all schools with a wide variety of materials made available through the national parent alliance (Parent Center Network).   Schools could now offer training to both parents and professionals in their schools whenever they chose to.

This allowed them to continue to build for capacity by training, in house, those who would be coming behind them to assume the role of resource parent.

Working together we were able to achieve more in a short time that had ever been study_libraryaccomplished before and both parents and schools felt ownership of what we had done. The shared responsibility fostered a shared pride in what we were able to achieve together. This shared responsibility and easy access to concise information provided by the schools to parents did much in the way of reducing conflict and reestablishing trust.  We have an annual conference planned and implemented by parents and district staff.  All of our activities are supported by our School Board and Superintendent.

To date we are continuing to increase the numbers of site based resource parents until we reach our goal of 100%.  Our data has already reflected a decrease in parent conflict to the point of non-existence. Parents are accessing information from the School District site based, or by accessing the website, myself, or my staff.

In essence what we have accomplished is to bring national evidenced based, best practice, OSEP vetted parent materials to every school.  Providing materials written by parents for parents and presented by parents.

Sustainable site based parent information, resource, training and support, in the school the child attends.

Posted in Disability, IDEA Information, IEPs, IFSP, Parent Involvement, Parents Training Parents, Public School, Special Education | Tagged , , , , , , , | 1 Comment

23. Information To Parents – Given By Parents

I have had many opportunities to meet with others and participate on state and national levels as an advocate, but there are two opportunities that I hold as real honors. Two of those were invitations to participate in summits held by the National Council on Disabilities. My first was Achieving Independence in the 21st Century.  Achieving Independence: The Challenge for the 21st Century

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I participated on the education committee.  We were charged to address ways to increase student participation in regular education classes prior to the passage of the ‘97 amendments to IDEA.  The two recommendations that came from our work were neutral funding and adding the word informed to consent.

Prior to this change the more restrictive of a class setting a child was placed into, the greater the amount of funding the district received.  If the student was placed in a regular education classroom the funding was reduced. This type of funding formula encouraged districts to place children in segregated classes, and leave them there where they received the greatest amount of funding.  We suggested instead that the funding be determined at the initial IEP based on the child’s needs and after that the funding would follow the child.  It became part of the ‘97 amendments and now all states have a neutral funding formula.

The second recommendation our committee made was to insert the word informed in front of consent. The reasoning here was that before parents gave consent to anything they would be informed as to what they were giving consent to. We hoped this would make parents aware of their rights and lead to more children being placed in the least restrictive environment.

My second opportunity was another summit – Back to School on Civil Rights.  (Back to School on Civil Rights)  This time we were charged with thinking outside of the box as to how we could better see education laws followed in school settings. Recommendations were submitted for consideration by each individual participant.

I believed then, and still do today, that only parents of children with disabilities possess the empathy, and have the vested interest, to provide the level of involvement it requires to reach other parents.  My reasoning was that parents would only receive partial information if that information were provided by parent liaisons who were school system employees.  My recommendation was that all parent services be provided to parents by parents and through a neutral parent organization such as a Parent Training and Information Center (PTI).  To ensure compliance with IDEA in school settings would require that parents receive all the information they would need to make informed decisions and to become equal partners in the special education planning process.   The materials provided to parents would be written by parents for parents, and therefore would be supportive and easier to understand.

It wasn’t long after the second summit and this proposal that I was again approached by the school system and given the opportunity to put this idea into practice.  For the second time, I was approached and offered the position of parent liaison.  There had been a major turnover in administration and the new administration was thinking there had to be a better way to work with parents. I had spent a really long time mired in conflict trying to get them to work with parents.  The previous offers of collaboration had proved to be short lived and meaningless but now things appeared to be different.

It was explained to me that our District had written for and obtained a grant that used IDEA discretionary dollars for parent services on a district level.  I expressed a willingness to accept the position if it was a contracted position with a parent center. (Parent Technical Assistance Center)   This would allow me to remain a neutral party and still serve parents.  The district agreed, and a contract was drawn up between the Parent Center and the District through which my services were to be provided.  It was now official I was responsible for the provision of all parent services to parents of children with disabilities, the parent liaison and co-chair of the Advisory Committee.

ESE-Logo-pngI now had an opportunity to implement the parent model I had submitted to the National Council on Disability in my own community.  A model that promoted being collaborative and proactive rather than adversarial and reactive.  This atmosphere of hostile negativity and adversarial climate must change.  Both sides seemed so willing to perpetuate this toxic harmful relationship with children in the middle.  We wanted change and were willing to build a model of collaboration to get there.  We called this collaborative model “Sharing the Commitment“.   It combined the provisions of an advisory council, a neutral parent liaison and site based parent resources, with a budget that supported my services and three additional part time parent services positions. Contract, budget, and staff in place – it was time to start implementing a model for parents – Sharing the Commitment to Excellence

I inherited the previous efforts to initially implement the model that began by training parent teacher teams nominated by building principals.  This group of parent teacher teams became the core from which our advisory was birthed.  The provision of all parent services for parents of children with disabilities had become my sole responsibility and now I had to make it work.

We collaboratively drafted the advisory by-laws An Advisory Committee to the Exceptional Student Education Department.   Based on those bylaws we filled the advisory seats (Sharing the Commitment Membership) and began to do business.  After all those years of conflict I now had an opportunity to create an advisory committee from which all could benefit.  I knew what it was I wanted to see in place. The goal had been the same from the beginning, site based, sustainable, parent information, resource, training and support.  Although I knew exactly what I wanted to see happen the process required group consensus to move forward. I did have the history of my predecessor’s attempts to implement an advisory to learn from.

Fourteen years later I am finally seeing the plan come to fruition and will be sharing with you the path we took to get there.

Posted in Disability, Emotion, IEPs, Least Restrictive Environment, Parent Involvement, Procedural Safeguards, Special Education | Tagged , , , , , , | Leave a comment

22. And Off He Went … To College!

We had survived middle school relatively unscathed.  He had those fresh out of college teachers who were excited about their profession and so eager to teach.  My son really benefited from being there.  He entered high school continuing on with advanced placement and honors courses.  He was turning out to be fine young man.  His stated preference for the advanced courses was that those kids were there to learn and so was he. By this time he was used to attending his IEP meetings and participating. He had retained the same oral interpreter (About Oral Translation) that he had since third grade. She had followed him from grade to grade for six years. He had a wireless FM system (FM Listening Systems) for class use, help from a teacher of the hearing impaired, and speech therapy.

The first IEP meeting of his freshman year was scheduled and I had prepped myself to pursue real time captioning.  We had trialed voice recognition software (Speech Recognition) to be used by the instructors, but it wasn’t effective and required too much in preparation to be effective so I saw real time captioning (What is Real-Time Captioning?) as the next step at the cost of about six thousand dollars.

I had spent a considerable amount of time and energy researching and preparing for this meeting. I had reviewed applicable laws and the educational benefit and access he would receive from it.  We all sat down at the table and I began to outline my proposal for this new service I wanted for my son, to maximize the instruction he would be getting in the class room.  My request for real time captioning was met with arms across chests and much eye rolling, but then I had expected the opposition and wasn’t the least bit phased by it.  During my years of advocating for my son, I had been told no numerous times and always had been able to bring the IEP team around to my way of thinking.  Unfortunately I overlooked one thing that would derail my request.

I am the IThis time things would be different because this time I had failed to do the one thing that I should have done.  I failed to do the one thing that would have made my plan successful.  I failed to discuss this plan with my son before the meeting!

I would have saved myself time and energy for when I turned to him and asked how he felt about real-time captioning he replied that he did not want it!. Not only did he not want the captioning he no longer wanted the oral interpreter following him around, and he no longer felt the need for speech therapy either.

As I sat there with egg on my face I realized that my son had become a self-advocate!  For all of those years, since his birth, it had been me at the table, making decisions that would help him get the services and supports that he needed.  Now, it was time for me to step back and respect his wishes.  So … I agreed to try the things he wanted for a grading period then revisit it at another meeting.  I’ll admit it was hard giving up the safety net of services that I had in place for him realizing how hard they were to get in the first place, but the hardest thing for me to take were the smirks on the faces of the district staff as I had to give in and respect his decisions.

Well I am glad to report that he was right and he continued to be very successful with only Caymanthe wireless FM system and the instruction from the teacher of the hearing impaired, and that was minimal. His grades continued to remain A’s and B’s in honors and advanced placement courses until he graduated.  In his senior year we co-presented on his disability and the laws protecting his rights to his honors psychology class and in closing the presentation he said – “Always give time for the person, to see who they really are,” he said.  “Not just on the outside. By taking time you will realize what you might have missed on the inside.” (The Path to Graduation)

In closing this story of the little boy who would never read above a third grade level, he went on after graduation and applied for services from the Florida Division of Vocational Rehabilitation – DVR (Vocational Rehabilitation) and was found eligible for their services.  Based on his individual plan for employment – IPE, (Developing Your IPE) he was funded to attend Florida Gulf Coast University (FL Gulf Coast University).   DVR also provided him with a laptop and wireless FM system and off he went to college.  After two years studying business he decided he liked working with his hands and went into the heating and air conditioning business.  He is married and has two sons of his own.

My reward for all of this is an empty nest with no one sitting on my couch and sons that are living independently pursuing their own quality of life.  You would think that my involvement would end here but I am still picking up the ringing phone helping others as I write this continuing to pay it forward.  (Pay It Forward!)

 

Posted in Advocacy, Deafness, Disability, IEPs, Inclusion, Least Restrictive Environment, Parent Involvement, Public School, Special Education, Vocational Rehab | Tagged , , , , , , , , , , | 1 Comment