Dr. Tiegerman Speaks

There are a number of misconceptions concerning children with disabilities that need to be addressed.  Firstly, children with developmental disabilities are not all the same; this is not a homogenous population.  There is as much diversity within the disability population as there is within the typical community of learners.  Secondly, just because a child does not understand you does not mean that there is “nothing going on” in his head. Thirdly, children with disabilities are different not deviant.  They experience the world in a different way and therefore, have a different perspective.  Finally, let us not project a value to this difference which results in a judgment of good, bad, normal, and/or abnormal. 

            The fact that children have disabilities does not mean that they cannot interact with and/or think about their environment.  If you watch children with disabilities closely, you will observe not only their differences but all of the things that they can do.  The reality is that they can do a lot.  It is just that society has a very narrow perspective on how social behaviors are defined (i.e., appropriate or inappropriate).  So if a child cannot give a specific answer to a specific question, then the score on the test is zero.  There is very little time spent giving children credit for their social differences.  Inside of every child is a person with an unique personality.  There is no reason why we should all be the same, act the same, speak the same or think the same.  Just as we give a tremendous amount of credit to artistic or gifted adults, we should do the same for children.  We even provide interesting explanations about adults who are gifted and talented by making comments such as: “Well, he’s a math genius so he’s thinking about astrophysics and not paying attention to the rest of us.”

            The point here is that individuals with disabilities have a great deal to offer society.  You might ask: “Do individuals with disabilities have gifts and talents?”  My answer to you would be: “Have you looked?”  Yes, individuals with disabilities, even children, have special gifts and talents.  We need to spend time in schools and at home searching for these skills and developing avenues for these abilities to flourish.  Many people assume that individuals with disabilities “cannot do anything.”  Society needs to realize that individuals with disabilities can contribute much more than they are being asked to do.  As an employer, if you have the opportunity to work with a special education school that educates students with disabilities, I encourage you to do so.  You will learn a great deal about yourself, you will provide your employees with an altruistic experience, and you will do a great deal to expand the philanthropic profile of your business within the community.

            So, when you look at the four-year-old who has a disability, do not walk away – observe the child.  There is somebody in there who will come out with the right intervention and the right teacher.  Our schools provide comprehensive special education services which seek to develop and maximize the potential of every child, but even with this, we need to set aside existing prejudices about individuals with disabilities.  They are not all the same.  They have skills and abilities as well as special talents just like the rest of us.

Ellenmorris Tiegerman, Ph.D.

Founder and Executive Director

The School for Language and Communication Development

For the past ten years, Long Island students with disabilities from as far as Suffolk County have been sent to New York City, Westchester and out-of-state schools.  Educational approval by the State Education Department (SED) is required to reimburse school districts for New York State students with disabilities.  In fact, there is a form entitled “Notice of Commissioner’s Approval for Reimbursement” which is submitted by every school district for every child with a disability.  According to SED there is no need on Long Island for special education expansions to accommodate the increasing number of students with disabilities.  In essence, these children do not exist.  It’s magic! 

Special education programs on Long Island have been forced to turn children away when they had openings because of program CAPs.  To keep the Long Island programs small, students with disabilities were and still are being sent off of Long Island.  The question is, how many children are being sent off of Long Island on an annual basis?  Well, try and find out.  Under the Freedom of Information Act, documents were obtained – not easily – to determine where Long Island students were actually going.  But even now, it is still impossible to determine the actual number of Long Island students being sent off Long Island.  Why?  The plight of Long Island children has not gone unnoticed by members of the New York State Legislature.  Parents along with special education programs have petitioned their legislators on this issue for years.  Applications have been submitted to the State Education Department with letters of support from Superintendents, Chairpersons of Committees on Special Education, elected officials and parents.  But consistently since 1997, Long Island programs have been denied expansions.  The impact has been devastating since parents and children have been and still are being denied educational opportunities close to home.  Documents show that many students from as far as Suffolk County and from almost every district in Nassau County send students with disabilities off Long Island.  What options do they have when Long Island programs are CAPPED by SED?  Educational options have been limited by CAPs even when increasing numbers of children with autism spectrum disorders need services.  Either parents are being forced to accept whatever is “open” on Long Island or search for New York City, Westchester and out-of-state schools. 

The letters from parents to the State Education Department supporting expansions of Long Island schools are heart wrenching.  The letters from Legislators who are our elected officials to SED are disturbing.  When Legislators do not have an impact on a state agency on behalf of their constituents, it is frightening.  The fact that the State Education Department is independent, autonomous and immune to the needs of parents, school districts and Legislators is indicative of a lack of accountability.  There is “need” on Long Island.  The question is what will be the consequences when more people begin to realize the extent of the problem on Long Island?  Given the nature of the cover-up and the children that have been affected by a policy which was developed without public hearings, the concern is daunting.  Who is going to “fix” this?  How much longer will children and parents have to wait for services on Long Island?  Will the next Commissioner have the vision to admit the grievous wrongs that have been committed and the courage to change the culture within the agency so this never happens again?  How many children from Long Island are being sent to New York City, Westchester and out-of-state schools?  You try and find out!  Watch for the “smoke and mirrors!”

Ellenmorris Tiegerman, Ph.D.

There have been dramatic changes in educational programs throughout the United States for the last decade. As new immigrants enter public schools there is more student diversity in classrooms creating a greater instructional range to meet children’s needs. Now more that ever children who may be at-risk and children with special needs are being kept in regular classrooms rather than being referred to Committees on Special Education. This means that the homogenous classes that you and I attended many years ago in elementary school no longer exist. Today’s classrooms have a much greater range in student development from children with special needs to children who are gifted and talented.  This mix of children creates a stimulating but at times demanding learning environment for teachers and students.

For children with special needs the “inclusion” classroom experience remains to be controversial in terms of its goals and outcomes. The underlying reason for inclusion is to provide children with disabilities the opportunity to access regular education classrooms with typical peers. This opportunity may not be beneficial for all children with disabilities so the determining factor is whether regular education is appropriate. For the sake of this article, let us assume that parents, teachers and administrators are all in agreement about Corey’s placement in a regular second grade classroom. For Corey the transition from a self contained highly specialized and individualized small setting of 12 students to a regular classroom of 30 students is daunting.

It is difficult enough for typical children to transition to new and unfamiliar settings. Parents can usually prepare their children by talking and reading to them about the upcoming changes. How does Corey’s mother explain to him what is about to happen? Since Corey has autism, his language abilities are very limited and the process is very difficult. For typical peers unless there is some preparation from the classroom teacher, the initial introduction to Corey may be strange and uncomfortable. It is critical to introduce the topic of “special friends” before Corey shows up in class. Typical students need to understand how Corey might respond to their social behaviors and to changes in classroom activities.

Parents of children with disabilities often comment that their children do not have friends. Children with disabilities are isolated by their limited language and social skills. So when someone approaches Corey to offer him a toy or call his name and he does not respond that is usual. Typical peers have to learn to use a range of strategies to engage Corey in an interaction. Children with disabilities have a great deal to offer typical children as friends and learning partners. Ask your child if there is a special friend in class and talk to him about his experience with a child like Corey. What does your child think and feel about another child who acts and speaks so differently from everyone else in class? You will be amazed at your child’s insights!  Adults can learn a lot from children….pay attention.

Ellenmorris Tiegerman

Founder and Executive Director

The School for Language and

Communication Development

For many parents, the fears related to their children concern the points of separation as they get older and become independent.  Parents of children with disabilities on the other hand are faced with the fear that their children may never separate and never lead completely independent lives.  The stages of development which are bitter sweet because they reference growth and accomplishment such as Communion, Bar Mitzvoh, graduation, dating and  marriage are painful reminders to parents of children with disabilities.  For many parents, having a child with a disability presents an emotional crisis resulting in stages of grief from denial to depression to ultimate acceptance.  To watch everyone else’s children proceed through typical childhood stages while your child appears “frozen in time” brings repeated pangs of embarrassment, frustration and sometimes shame. 

As parents grow older and their children start their own families, there is an incredible joy to becoming a grandparent.  It is wonderful to watch your adult child face agonizing management problems with a tantrumous three-year-old just as you did.  It is extraordinary when your grown children finally admit how being a parent is the hardest job in the world.  There is tremendous satisfaction when your adult child approaches you with humility and gratitude for all of the things both physical and spiritual that you struggled to do during the exhausting years from infancy through adolescence.

Many of these experiences, discussions and relationship changes are missed by parents who have children with special needs.  Within these families there is an ongoing effort to maintain a balance between parents and between parents and siblings since the child with a disability is often the focal point.  The graduations, religious ceremonies, dating experiences, college acceptances, marriages and grandchildren are often dreams that seem so far off that there is often little expectation that they will ever happen.  Many times they do.  Sometimes they do not.  So the lifecycle sequences within these families occur along a very different path.   

It may be difficult to think about when children are young, but parents age and eventually retire to different jobs, lifestyles, social networks and home environments.  For many parents of children with disabilities, their release from primary child rearing responsibilities does not take place quickly or easily.  As children with disabilities grow older and become adults, there is a concern about finding them jobs and homes where they can live with or without professional supervision.  Many parents in their 60’s and 70’s are still directly involved in monitoring their adult children’s services and medical care.  Parents remain to be primary guardians and are ultimately faced with the frightening and overwhelming task of finding someone who will be responsible for their adult children when they pass on.  One parent indicated that even in death there is no “peace.”  She said, “Even after all of these years, I have to be concerned that someone is going to take care of him and not abuse him.” 

These parents create a Special Needs Trust (SNT) and work closely with attorneys who specialize in disability care and law.  It becomes critical to find someone, hopefully within the family, perhaps a sibling or cousin, who will assume the guardianship of the adult with a disability.  For many parents who have taken care of their adult children, the identification of a “trusted” family member, friend or colleague is emotionally difficult.  Relinquishing control obviously does not ensure that a Trustee will always have the best interest of the adult with a disability at heart.  Usually the Trustee is given a great deal of discretion to determine how financial funds are going to be distributed on behalf of the individual with a disability.  When siblings or family members are not interested in becoming a Trustee, parents must then identify an organization that might be able to take a personal interest in the welfare of the adult with a disability.  This is a complicated process which requires a great deal of time and study, and obviously parents need to speak to legal experts and advocacy organizations to make sure that the Trust is established appropriately.  Since there is a great deal of legal work and financial planning involved, it is in the best interest of families to begin this process as early as possible so that at the time of death, the SNT will be accessible and available without an interruption in life care services for the adult with a disability.  Although parents of young children rarely focus on end-of-life issues, this becomes a significant source of anxiety over a lifetime for parents of children with disabilities.

Ellenmorris Tiegerman

Founder and Executive Director

The School for Language

and Communication Development

It should not be surprising that the divorce rate in the United States has been steadily climbing.  Reports indicate that the rate is anywhere between 45 and 50%.  In addition, the divorce rate for second marriages is even higher at 60%.  The explanations for such a high rate of divorce in the United States range from economic stresses to fragmentation in the family to the younger generation’s inability to commit to long-term relationships.  Of course, there is no single or simple explanation that can satisfactorily provide a clear picture of the diverse couples that bravely forge ahead in the hope of establishing stable families with children.  There is however a concept which is referred to in clinical circles as “resiliency” which describes a group of individuals who despite overwhelming negative environmental factors manage to overcome and succeed in life.  I believe that parents who have children with disabilities present the best examples of families in crisis who despite all of the adversity manage their lives and ultimately find “peace” with themselves and their children. 

            Obviously, marriage is fraught with overwhelming obstacles and unforeseen difficulties.  Part of the problem relates to each person’s expectations of what a “happy relationship” should be like.  The princess syndrome which highlights a fairy tale outcome involving living happily ever after has been described in many of the self-help and trade books.  Marriage takes a great deal of work, and couples are often unprepared for the realities of unanticipated disappointments and unfulfilled expectations.  If people spent as much time on their marriages as they did on their businesses, marriages would probably be much more successful.  Marriage takes a great deal of work, time, patience and commitment.  These are characteristics which many young adults learn to acquire from their children who are great teachers.  Children are demanding, self-involved, tantrumous and impatient.  The amazing thing about having children is that adults learn about themselves from their children.  No one is born to be a parent.  Adults become parents.  Parenting is a selfless job and perhaps the greatest lesson to be learned is that children are sometimes thankless and unappreciative.  How many times have you heard from friends and colleagues “I gave them everything and they appreciate nothing?” 

            For parents of children with disabilities, the job is even harder and the statements of gratitude are fewer.  If parent/child relationships are complicated with typical children, they are even more complex with children who have disabilities.  The sense of pride in children’s accomplishments is much different in families where there are children with disabilities.  Getting an A on a test, graduating from elementary school, dating and competing in school sports do not represent the same stages of achievement in a child with autism spectrum disorders.  Very often parents of children with disabilities are excited about smaller changes in life which are really greater accomplishments for the individual child such as learning to talk, toilet, dress, and read independently.  Some of the things that we take for granted in typical children may represent unreasonable expectations in children with disabilities.  

With this as a backdrop, it should not be surprising that couples who have children with disabilities are faced with greater challenges and are at a higher risk for divorce.  Aside from the demands of work, home and siblings, the child with a disability becomes the focus within the family.  His needs are so great that resources, time and attention are shifted away from everyone else to him.  Last on the list of things “to do” is being a married couple.  Parents often complain that they have no time for themselves let alone for a marital relationship.  They are sometimes so emotionally drained there is nothing left to share with a spouse.  Despite the overwhelming problems faced by these families, most parents find an inner strength to reach out to each other with support and love.  The adversity serves to strengthen relationships with a greater appreciation for family and friends. 

Ellenmorris Tiegerman, Ph.D.

Founder and Executive Director

School for Language and

Communication Development