37. Feeling the Power of Knowledge

Self-advocacy and self-empowerment begin once we start to acquire information.  What happens when finally we find the information lifeline and the light bulb of understanding becomes lit?  I have shared, previously, the frustration I felt when I did not have access to accurate information, and later having so much information and not knowing what to do with it.

I can remember walking away from a training muttering ‘it’s the IEP, it’s the IEP”.  I had just realized that all of my efforts to convince our district to do the right thing, and beating my head against a brick wall, without results was because I had been approaching it from the wrong direction.  It was the classic case of not being able to see the forest for the trees.

momdaughterThe procedural process under IDEA is the single thing that determines what, where and how a student is provided services.  Of course section 504 and the ADA are also important in granting access beyond the classroom setting, but OCR will look to the IEP when determining if those things were considered.  Questions and Answers on Disability Discrimination under Section 504 and Title II

I think most parents first feel a sense of relief when they finally start to become advocates for their children.  This is followed by an uncertainty where we question our abilities and the acquired knowledge, and need to be reassured that we are correct in the understanding of how to apply the information to our newly acquired advocacy approach.  Depending on what has transpired previous to learning the procedural process, there may follow a period of time required to get emotions under control just to be able to consider a collaborative approach.

I was once asked this question by our School Board Chairman:  “Why are parents of children with disabilities so angry?”   The response I gave was:  “They do not understand procedural process which results in frustration followed closely by anger.”

Having the correct information will actually reduce conflict and promote collaboration.  It really is in the best interest of School Districts to provide parents with any and all information from the beginning.  The sooner parents have access to the right information, the stronger the collaboration and partnership becomes.  In applying the information we have acquired it is, first of all, important to achieve the desired outcomes for our own children.  Then it is just as important to share the gift of knowledge we have acquired.  This has been the driving force behind my actions in promoting self-advocacy for all these years.  I never forgot the feeling of frustration as a man not being able to “fix things” as I had no idea how to do it.  Remembering that frustration and feeling of helplessness has been the driving force in my continued daily sharing of information, hoping to spare the next parent any need to go through the painful process I went through.

Once we reach this point in the process with the understanding that sharing information high school studentswith any and all is the true catalyst for change and collaboration, we begin to make a sustainable impact.  Throughout this evolving process of self-enlightenment there are points at which we all need to assess exactly how we are using the information and look beyond the immediate impact that it is having on an individual basis, and start looking at the long term effect it may have on others.

With twelve percent of Americans having some type of disability, it is apparent that disability is a part of our daily lives and will remain that way for the remainder of my lifetime – and yours.  Disability Statistics – It happens more often than you’d imagine.    Thus the responsibility for the preservation and sharing of the information falls, as it always has, to those of us in the disability community.  I think it is also our responsibility to mold how society perceives disability.  In any civil rights movement in history this has been as important, as the rights themselves, to the long term sustainability to mainstream access. By focusing on the positives that people with disabilities have to offer society, and moving away from the long embedded belief that people with disabilities are a burden on society (when in reality that could not be further from the truth) we are able to move toward embracing differences.  Gradually, we are moving in that direction evidenced by people with disabilities being more accepted by mainstream society.  We see people with disabilities appearing in movies, commercials and other forms of media which they were previously excluded from.

So in this new age of enlightenment we, as a disability community, need to move forward with the approach of turning swords into plowshares and taking our rightful place as a naturally occurring part of society.

Posted in 504, ADA, Advocacy, Dads, Disability, Emotion, Fathers, Florida, IDEA, IDEA Information, IEPs, Inclusion, Parent Involvement, Procedural Safeguards, Public School, Special Education | Tagged , , , , , , , , , , | 1 Comment

36. The Instant Gratification of Information

With the access to the World Wide Web and all the information that comes with it one worldwidewebwould think that parents would be able to find what they need.  It is interesting to note the contrast coming from the perspective of little or no access to information, or to other parents, when I began advocating compared to today with an endless listing of resources. When I typed the word “disability” in a Google search, I received seven hundred fifty seven million results.

I find in talking with parents that regardless of the ease of access to all of the information the same dilemma persists in that there is such a flood of information they become overwhelmed trying to sort through it all to find what is applicable to them.  So the conclusion is not the information but how to and when to use it once accessed.  This is why other parents are the best resource in advocating for your child or others.  They have that practical application and experience to guide you down the road to success.  As in any discipline there can be found experts.  There are experts on teaching, experts on a particular disability and experts on the many medical treatments and breakthroughs.  But nothing I have found can come close to the combined knowledge of parents who live the life and walk the talk daily.  I have always been an information sharing kind of guy.  Creating parent networks has been an interest of mine for many years.  (The Unplanned Journey)  I began with my own community then expanded to state and national connections.  With Facebook we now are now global!

The Parent Alliance is perhaps the single best resource and network ever created.  (Parent Center Network)   To be able to access nationally all of the different experiences of so many different Parent Centers is such a blessing.  This searchable network gives you access to parents across the nation from a wide variety of cultures, socioeconomic backgrounds, and geographical locations.  All you have to do is start matching as many like factors as you can to find the best match for your own circumstances.

InfoNever take any one source as gospel.  We all are not gullible enough to believe everything you read on the internet is true.  This holds true for all sources and information should be verified by multiple for accuracy.  Having access to the right information at the right time can be the difference in your ability to access a needed service or not.

Recently longstanding clearinghouse sources for parent information Family Village and NICHY have pulled websites because of lack of funding.  Two of the best list keepers of all will no longer be there when you need to find information.  I see this as a continuing trend given today’s economy.  This reinforces my belief that parents should be able to access any and all information they need directly from the school their child attends.  This is where parents often find out their child has a disability and how the disability will affect their child as they grow.  I understand this requires collaboration between parents and schools and sometimes reestablishing trust that has been lost on both sides.  I know I purchased so many books on law and deafness that set on shelves at home until I passed them on to another parent.  Creating sustainable resources site based and encouraging parents to share materials by placing them in schools is an excellent cost neutral way to provide the information to others both parent and professional.

Disability is a natural part of life and will always remain.  There is no preparation for becoming part of the disability community so consequently there will always be a need for current and accurate information.  Creating sustainable information and networks in your own community is the best option to assure that there is access, and support, available for parents as the need arises.  It will remain the role and responsibility of parents to help the multitude of other parents that will just be entering into the cycle by offering information and support when needed.  It is parents that have the practical experience and parents that really understand and relate.  As well-meaning as anyone else may be unless you have this experience firsthand you really are not capable of comprehending what it all means.

Despite the ease of access to all the information it will still come back to having another Momanddaughterparent who has gone through the experience teaching other parents when they have the need for that information. Working collaboratively with schools to create sustainable site based parent professional information and training is the answer. It is a win, win situation for all involved.  I created a model in my community that does just that.  (Sharing The Commitment – Collier County)

I have been affiliated with Parent Training and Information Centers (PTI) for 21 years now and know from that experience how critical it is to achieving the right information at the time you need it.  I can also attest to the difference being an informed parent makes when collaborating with bureaucracies. With the information and support from other parents to model successful advocacy, an opportunity for true community partnerships focused on child focused outcomes can be created. (Encouraging the Involvement of Parents of Children with Disabilities)

Posted in Advocacy, Dads, Emotion, Fathers, Florida, IDEA Information, Inclusion, Parent Involvement, Parents Training Parents, Public School, Special Education | Tagged , , , , , , , , , , | 1 Comment

35. Times For Advocacy

There are times during a school year that parents need to recognize as times where advocacy efforts are the least effective.  Consequently there are times that efforts should be increased.  Understanding this can lessen stress and increase effectiveness.

xmas bulletin boardTrying to accomplish changes prior to holidays is not one of the best times.  Pushing issues beyond the middle of November is a waste of time.  If you have not come to the table before this, then making your issues known and requesting data collection is probably all you can hope to achieve.  During the holiday breaks no one is focused on anything but enjoying the holidays with their families, and my advice to parents is to put things down and do the same with their families – picking up issues when schools reconvene.  This can be difficult to do when you have become entrenched in advocating for an issue.  We often become so consumed with that focus that we miss out on things that all others are benefiting from.

Sometimes the best course of advocacy is no action at all.  Taking time to put things down and recharge yourself may be the most beneficial thing you can do, and will reap benefits when efforts to advocate are resumed with you being rested and able to focus.

Meetings held prior to breaks usually end with the same conclusion of returning after the break to address an issue.  Choosing the best times in a school year are as important as the services or changes being sought.

All agencies, State, Federal, and court systems will adhere to the same calendars limiting activities during these breaks, so parents should follow suit.

Trying to address issues in the time prior to the end of the school year is another fruitless expenditure of energy.  Best case scenarios for these periods of down time are requests for evaluations, looking at the need for extended year services, and documenting baselines, so when you return from breaks you are able to measure recoupment of skills and can determine the need for services.

Advocacy is like running a long race.  There are times to pace yourself and times to sprint gasparillarun022313_10329581_8colfor the finish line.  For most it will be life-long, so learning to recognize this is important to your success.

I have also learned to establish clear baselines for responses and closure when sitting at the IEP table. Leaving decisions open ended as to when it will happen often leads to frustration and disappointment. Timing is essential when looking to complete an objective.  I always found it effective to have two IEP meetings per year.  One at the start of the year to get everyone on the same page, and a second at the end of the year to revisit progress and look at priorities for transitioning to the next grade.  The IEP process is not meeting once a year but requires constant communication and monitoring throughout the year.  Small manageable chunks that when pieced together provide the desired outcome works best for me.

Life should be an IEP (Individualized Existence Plan).  Where are we now?  Where do we want to be at the end of the year?  What does it take to get there?  How far did I go today? Knowing that it will not all happen at once and that skills may need to be taught and then built upon.  As long as progression can be seen and measured you are expending energies in the right direction.

 

Posted in Advocacy, Disability, Emotion, Fathers, Florida, IDEA Information, IEPs, Parent Involvement, Public School, Special Education | Tagged , , , , , , , | Leave a comment

34 Parents Have Impact at the Local Level!

Where does a parents’ voice for change have the greatest impact?  Washington?  No.  The State Capital?  No.  The answer lies in the community in which you live.  The local elected officials that represent you is the answer, your local school board and other community based boards

boardWe often overlook our right to address the local School Board with educational concerns.  A School Board has the responsibility to provide an education to students that live within the district they serve. This includes compliance with all state and federal laws regarding the education of children with disabilities.   (Florida Statutes and State Board of Education Rules)

School Boards are elected officials voted into office by the public and by either retaining or replacing one or more of the members can change the entire dynamic of the group.  Motions are rejected or accepted by majority vote so having a voting majority that supports children with disabilities is paramount to the provision of services and the retention of administrators.  For School Boards to act they must be in a scheduled meeting which is open to the public.  Everyone from the Superintendent down is there to carry out the directives of your School Board.  For you to bring an issue before them and get action requires you to address them in the public forum.

If it is an issue of compliance with any of the three federal laws (IDEA, Section 504 or thepolicy_manual ADA) I am quick to point out the documents brought before the Board and accepted that then become School Board policy.

For IDEA it is the Special Programs and Procedural Manual or SP&P (ESE Policy and Procedures).

For Section 504 and the ADA it is the 504/ADA Procedural Manual (Protecting Students with Disabilities).

These written policies are brought before the School Board, voted upon, and accepted.  Once that happens, it is the responsibility of the District Administration to carry out the Board policies.  It then is your right as a parent to go before your school board if that policy isn’t being followed and request reasons why.

Change does happen on state and national levels and it is important to keep current and remain involved.  However the implementation occurs where you live and your children attend school.  Research your School Board members and track how they vote on issues.  Provide the Board members with information to help keep them current on IDEA, 504, and the ADA.  Through your involvement you can help to educate and support a Board that is supportive of children with disabilities.

A school district is only as effective as the leadership making the decisions. I personally have addressed my local School Board on numerous occasions addressing a variety of issues impacting children with disabilities.  Speaking in a public forum does require a certain skill set but it is not something that cannot be acquired by any concerned parent.

To get an action regarding an issue may require continuing to address the Board many times, requesting they take action on any issue.  The important thing is you are there letting your voice be heard.  No voice means = no consideration.

School_board_2009Public disclosure can be a powerful tool.  Bringing issues to light in a public forum can rally support from unexpected sources in our community.  It can also be a double edged sword in bringing opposition to your agenda. To maintain credibility it is important to have done the research on the issue in question and be prepared to give a concise statement of the facts, and be prepared to answer questions in defense of your position.  I have found it to be helpful when addressing a School Board to prepare packets of information regarding your position and send them to each board member prior to the meeting at which you plan to address them with your issue.  When anything becomes Board ordered such as the forming of a Parent Advisory Board, or committee, only the School Board can undo the action.  As mentioned previously once approved by the School Board it then becomes School Board policy and must be followed and enforced by all district staff including building principals.

If you are not familiar with your School Board take time to attend meetings and get to know who is representing you and your child when it comes time to make decisions.  Be involved in the selection process for it is the leadership of these elected officials that will be reflected in the attitude toward our children when carrying out their directives and vision.

It has been my experience that disability is never an automatic consideration when issues or plans are initially implemented, but rather comes after the fact.  We need representation from the start on all boards, committees or any other forums that are making decisions. Someone needs to continuously ask the question of how individuals with disabilities are being included and represented when decisions are made.  When I am confronted by a statement regarding how things are done my first response is to request a copy of the policy and who is responsible for the writing and implementation of it.

Often it is the written policy that is the problem and staff is just following a policy that may not be compliant with state and federal laws.  Written or unwritten, spoken or unspoken, if a practice is routinely done – that practice becomes policy and can be addressed in a compliance complaint.  (Disability and Education Laws)

Step up, be informed, and stay involved, not just for your child but also for others who have no voice to speak for themselves.  Keep current on your district’s policies, and when in doubt – check it out by researching on the links provided above.

Posted in 504, ADA, Advocacy, Disability, Emotion, Fathers, Florida, IDEA Information, Inclusion, Parent Involvement, Public School, School Board, Special Education | Tagged , , , , , , , , | 4 Comments

33. Invisible Disabilities

Perhaps one of the hardest things to get the public, general educators and, in some instances, parents to understand and accept are the disabilities that are not obvious.  Statistically ten percent of the population has an invisible disability.  (What Are Invisible Disabilities?)

LDThese invisible disabilities are hard to accept and so easy to deny. They are also easy to hide if you do not want others to know you have a disability, evidenced by so many children in school settings that do not want to appear different to classmates so they reject assistance and suffer in silence.

Invisible disabilities range in variety as well as severity but all are real and equally frustrating to the people that have them.  I am very versed in this subject because I have an invisible disability.  I know that there have been people who have been quick to dismiss a request for assistance from a person with an invisible disability who requires an accommodation.  I wish that simply denying access or punishing behavior issues would cure disabilities.  I wish that trying harder would make a disability go away, or we will outgrow them, but in reality none of that will ever happen. 

What more commonly happens as a result is that the disability goes undiagnosed or not served.  Instead we call the child lazy, accuse him of faking or of just being a bad kid due to lack of appropriate parenting.

If the child could do it she would, just to get the pressure off, but she can’t.  So then it becomes an issue of actually punishing a child for having a disability.  Over and over it happens every day until eventually the child just gives up.

We know, statistically, that the invisible disability population is more likely to end up in the juvenile justice system (Wrightslaw – Juvenile Justice) yet we continue to punish rather than provide the support needed because someone just looks at the child and makes the determination that the child just needs to try harder, and maybe punishing more is the answer. 

learning image may 10Despite the fact that children with invisible disabilities make up the largest percentage of children served under IDEA and section 504 they are often not identified or served until they are so far behind that they never catch up and suffer the consequences in silence while struggling with three hours of homework each night – assisted by an equally frustrated parent with an invisible disability of their own.  (What Causes Learning Disabilities?

We have made some progress in the early identification of children with Learning Disabilities using the Response to Intervention process by looking at behavior and academics in educational settings  (The Essential Components of Response to Intervention)  using scientifically based researched instruction designed  to provide early intervening services that would eliminate children falling through the cracks to the point of getting so far behind before being identified.

In addition The Americans with Disabilities Act as Amended restored and expanded protections for many of these invisible disabilities.  (The Americans With Disabilities Act)

But like most disability laws they too have fallen far short of their original intention when enacted. Children continue to be lost to a bureaucracy driven by a focus on overall scores and not individual needs.

The really sad part of this is that these individuals have so much to offer, and can be gifted in so many areas, but will never be given that opportunity simply due to the invisibility of their disability.  Once again it appears that the real barrier lies not with the disability but with those without disabilities that fail to recognize its existence. 

I can only shake my head knowing full well that everyone will, without fail, experience disability at some point in their life – and maybe then they too will understand what discrimination on the basis of disability truly feels like.

Posted in Advocacy, Dads, Disability, IDEA Information, Identification, Inclusion, Invisible Disabilities, Parent Involvement, Public School, Special Education | Tagged , , , , , , , | 1 Comment

32. Letting Go. The Right to Independence.

Along with successes come mistakes, for that is how we learn.  It is difficult to understand good unless you have experienced bad, right without wrong.  This never happens with isolation and segregation that restricts and limits exposure to life.  It is not only society that promotes this isolation but often it is those that care the most.

dockedMany years ago my mentor referenced a quote: “A ship is safe in harbor, but that’s not what ships are for.”    The “ship” is a metaphor for a person. The quote is basically saying that a ship is safe in harbor, but that’s not what it’s for.  Ships aren’t built so they can sit there in a harbor. Ships are built for sailing and adventures in the sea. There may be risks, but hey, that’s what the ship was made to do.  Much like a person can be safe and comfortable at home, but that’s not the point of life.  The point of life is to explore and have adventures, not sit at home and think that you are, at least, safe.

I recently attended an IEP with a mother and daughter and saw that example practically applied. Through assisting the  parent in her efforts of advocating spanning a period of time beginning in elementary school and now progressing into high school – I have seen the reluctance of the mother to let go.  But this year I did see the loosening of the grip and the cutting of the apron strings. The result was the birth of a self-advocate and a young lady emerging as the person running her own IEPs and making her own decisions.  I, totally, get the concept of not wanting to let go or give up the carefully and sometimes hard won safety net of services we weave around our children with disabilities to protect them.  I experienced this first hand with my own son and when it turned out that he was right in determining he didn’t need those services I will admit I experienced mixed feelings.  When I saw his “ship” sailing with sails billowing and his own course in life set, I accepted that it was time to let go and relinquish control of the tiller to him.  I admit I become frustrated with parents that have no intention of allowing their children to make decisions or accept the fact that keeping that ship tied to the dock is not the thing to do.  Yes, occasionally they will run aground and tear a sail or spring a leak. I know I did, and so did my father before me – that is just a natural part of experiencing life.

So how do you convince someone that smothering and over protecting may not be in the best interest of a child’s development toward independence?  There is good reason that IDEA addresses transition (Transition) building toward the inevitable day they children reach the age of majority.  (Age of Majority)

I know as some are reading this they are scoffing at ever letting go of control or considering accepting that their children might have a vision of their own future – which may differ from their parent’s vision. There comes a point in a person’s life when they should have the free will to make their own decisions, to the maximum extent possible, and not have every decision made for them.  Having previously voiced this and suffered the ire of many an irate mother on numerous occasions, I remain cautious in making that point known.  It doesn’t change my beliefs that an individual has the right to make mistakes and realize the consequences of the choices they make without someone else deciding for them.

“No decisions about me, without me” is such a profound statement that we all apply in our lives and should not have a different standard for anyone else.  One of the things that factors into my continued efforts of advocacy is that individuals with disabilities, given proper supports, consistently exceed the expectations of professionals, and parents too! Too often it is predicted that an individual with a disability will never be able to accomplish something.  Then the same people who predict failure are surprised when their low expectations are replaced by success.  Stereotyping individuals with disabilities can make one look foolish.

sailing shipSo, if you should find yourself restricting the life experience of a person with disabilities, offer support and foster independence instead by raising anchor, casting off lines and moving away from the dock.

Posted in Advocacy, Dads, Disability, Emotion, Fathers, Florida, IDEA Information, IEPs, Inclusion, Least Restrictive Environment, Parent Involvement, Public School, Self Determination, Special Education | Tagged , , , , , , , , , , | Leave a comment

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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