The hospital forgot to call our pediatrician. After a split-second on my mom’s stomach I was handed over to nurses and an unknown pediatrician we refer to as Doctor Gloom. Our pediatrician, Dr. T, was nowhere to be seen. While nurses attended to Mom and me, Doctor Gloom advised my dad to call family and cleric before I drew my last breath.

Instead, Dad phoned Dr. T’s office  and pleaded with the exchange voice on the other end of the  line. Within two minutes Dr. T entered the room and took charge. He was at the hospital doing rounds all the while, and wasn’t one bit happy with the lack of notification. He assured Dad that he would do his best, but the outcome was up to me.

Mom was hospitalized for seven days, and I was discharged one week later.

Following Dr. T’s orders, a radio became a permanent fixture in my room. I was to be exposed to language,  music, and conversation 24-7. When my parents weren’t reading to me or talking to me, the radio was on.

Dr. T diagnosed me with cerebral palsy at 18 months.  Special education services began immediately. At 28 months, I was introduced to AFOs, walkers, and my first hot pink wheel chair.

And thanks to Dr. T’s advice, I was talking with close to impeccable grammar in complete sentences.

I am in the process of writing my story for publication. In the meantime, Dad suggested that I use his special ed blog  to give readers a glimpse of my life growing up with cerebral palsy.  I am delighted to share my story because I think it has value for everyone connected to special needs.

As far as my parents and I were concerned, my life inside the embryo was great and uncomplicated. My birth was to take place in late March of 1985. My mother was excited and so happy. I was her first child, and she could hardly wait.

Mom didn’t have to wait for March. Halfway through the month of January, I decided to meet the outside world.  Two months and a few days earlier than expected.

Wednesday, January 16, 1985, Mom went into labor. Dad took her to the hospital at 4:00 pm,  and she continued labor. Her gynecologist was out of town, so a colleague took the call. The colleague said to call her back when she had dilated appropriately. Contractions continued for what seemed forever.  The on-call gynocologist was informed. This time she prescribed meds to stop the labor.  But, alas! I was determined, and contractions continued in spite of the meds.

The regular doctor arrived at 9:00 Friday morning, and prescribed meds to induce labor with instructions to break Mom’s water.

After 49 hours of labor, I arrived at 5:14 pm, January 18, 1985. It was not a pretty sight. [I'll tell you all about it in my next post.]

• 70% of day-care centers use TV during the day
• 1 in 4 children under the age of 2 years has a TV in their room
• Children age 6 or under spend 2 hours watching TV compared to 39 minutes reading or being read to
• Repeated viewing of  violence on TV becomes accepted as  normal
• Excessive TV watching reduces boundaries between adult and child knowledge

The American Academy of Pediatrics recommends no viewing of television during the first two years of a child’s life, and no more than two hours beyond the age of two.

Children  in special education programs have specific prevailing developmental delays.   Other than audio-visual media  developed to supplement program objectives, the TV should stay in the media center.  

Your child is in a special program for specific reasons. Common needs are to develop language, mobility, social skills, appropriate behaviors, academic skills, work skills, personal care skills,  life skills, community and transition.  All of these need active participation for effectiveness. Passive television viewing robs time  designated for your child’s needs.

Television isn’t the only robber of time.  Children need to be engaged, not sitting passively as though waiting for something to happen.  How do you know?

You have to visit the school several times at different times to discover what’s going on. 

Develop an acute awareness, and take the school’s pulse. What is going on in the school office, classroom, lunch room, bathroom, and playground?  What you see, hear, and sense tell you volumes. Are the facilities clean and orderly?  Is the  message one of efficiency and care?  Or, is it one of chaos, disorder, and indifference? Are the children engaged, or are they sitting, bored, and unhappy? Are most of the staff members interacting with the students?   Or, are they visiting with each other, and self-involved?

Oh!  And don’t forget to check out the TV.

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Paul is a retired educator teaching in the public schools of Oregon, Idaho, and California. His experience includes school principal,  regular ed, and special ed. Visit Paul’s website at www.keenehealth.net . 

Coming Up: Dani’s Story The story of Dani shares her experience in special education from pre-school through community college.  The story is both sad and inspiring,  encouraging  parent involvement to advocate for their special children and speak up  for what’s right with unrelenting conviction.

Are the goals and objectives of your child’s Individualized Education Plan (IEP) being followed? This is the heart of your child’s education. It is through the IEP that determines compliance, or non-compliance with the law.  The law is to serve the educational needs of your child. 

Following the IEP is important. Therefore, writing the IEP demands utmost thought and attention. Think of it like this. The IEP  is the blueprint of your child’s needs.  Reading through the IEP  tells the story of your child’s past, present, and future. 

The parent, and child are the most important members of the IEP team. Make sure the story is recorded accurately.  Two concepts to keep in mind are the child’s needs, and the least restrictive environment.

Needs of the child

Needs are determined by where the child is now, and where the child can reasonably advance.  Some needs to consider are academic, social, life skills, community, physical or mobility, and needs associated with a specific disability.

Don’t overlook needs that require special services outside the classroom. For example,  transportaion, speech/language, psychological/counseling,  health service needs, and behavior interventions. Any service or need not written in the IEP,  doesn’t have to be addressed.  Naturally, every service or need desired may not be given.  To plead your case, come prepared with documents, medical records, past IEPs, and  perhaps an advocate who can substantiate requested needs.

Goals are written as measurable over a specific time period.  IEP goals are reviewed annually, or at request. During this time, goals are reviewed, revised, or rewritten. Ask for bench marks and short term objectives for major goals. This allows monitoring of the child’s progress toward long term goals.  Establish a method for reporting progress: by phone, teacher conference, or written report.

Least restictive environment

Select the environment that will be most conducive for your child to experience success. This may be within the structure of a self-contained special ed classroom.  It could be  mainstreaming elective classes for social interaction, or specific academic classes. It might be full inclusion with accomodations of a 504 Plan. Above all, it must be the environment where the child experiences  the most success.  This decision should not be taken lightly.

When in doubt . . . Ask

Communicate with the teacher.  This is the best way to assure your child’s IEP is being followed. Keep in contact. Visit the school. Ask reasonable questions. Get to the bottom of personality conflicts if they arise. Make reasonable requests. Be concerned and helpful with your child’s education, but avoid taking on the role of busy-body, snoop, or trouble maker.

The IEP,  incorporated correctly, benefits everyone. Teacher, child, and parent. It results in better teaching, learning, and parent involvement.

Current horror stories like the recent Great Falls, Montana  parents report  accusation of waterboarding-like torture on special education students, and the lawsuit stating that an Indiana teacher  tried to make an autistic boy sick are not a trend.  Reports of abuse occurred in the past, and more will take place in the future.

The Key is being Proactive

• Make yourself well-known at school. Communicate freely, and make unexpected visits.

Imagine the surprise and shock my wife experienced when she dropped by the school with some treats for the Halloween party to find the orthopedically impaired kindergartners out of their wheel chairs, lying on grimy blacktop trying to eat cupcakes and candy that was set directly on the surface amidst accumulated trash,  no  plate or napkin  in sight.

• Update pertinent information

Too often changes in contact numbers and medical information are updated only at the beginning of school year. Remember to keep pertinent information updated. In addition to contact names and numbers, report medical updates such as behaviors, allergies, and treatments. Include a number of trusted, varified, and supportive backup contact people for emergencies. Obtain prior permission.

• Introduce yourself to each staff member involved in your child’s education

Include teachers, classroom assistants, office staff, custodial staff, supervisors, principal, directors, and superintendent. Attend school board meetings and introduce yourself to board members.

• Participate in school activitities

Volunteer your services. in the classroom as well as district needs. Attend school functions and meetings. Join school organizations and be an active member.

• Be cooperative and positive

Expect the best and cooperate. Foster a mutual feeling and understanding that the priority is meeting the needs of the students. Expect everything to go well, but do not assume that it will. You are the best advocate that your child has.

The challenges that face our special children are difficult, but a sound, meaningful education from you and others who care can make the transition from school to community a success. Fortunately our schools are filled with those kinds of people.

The IDEA law ensures that your child with a disability receives special services. The law governs how the state where you live and its agency operates programs for early intervention and special education services from birth to age 21. Part C of IDEA relates to infants and toddlers, from birth to age 2; Part B covers ages 3 to 21. Be familiar with the Part that applies to your child.

Reauthorization of IDEA
In the 2004 Reauthorization of IDEA, the U.S. Department of Education was required to develop and publish forms consistent with IDEA Part B requirements. These forms include the IEP, Notice of Procedural Safeguards, and giving Prior Written Notice. You should receive these forms when appropriate. If not, ask for them. I suggest asking for the copies at your first eligibility meeting. If you haven’t started an organized special education file, begin one now.

Eligibility
You will join two or more professionals to form an eligibility team to determine if your child qualifies for special education or related services. The professional team must include a teacher appropriate for your child’s age or grade level, and a person that is qualified to administer and interpret diagnostic tests. Often the professional team is larger than the two required. Common members are the special education teacher, regular-ed teacher, psychologist, reading specialist, administrtor, and counselor.

Testing, observations, and other appropriate evaluations are administered and gathered before determination of eligibilty can be decided. Members of the team have to consider a variety of sources before making a recommendation.

Your Role as Parent
You know your child better than any one else. Your observations and documentations regarding physical and mental growth, motor skills, emotional and social behaviors, state of health, and development are vital to the eligibility process ensuring proper services to meet your child’s needs.

Don’t feel suppressed by a team of educators. Your background includes experiences valuable to the team, and gives new perspective. As a parent you provide special circumstances that would be overlooked by other team members. You know strengths and weaknesses of your child beyond diagnostic testing and professional observations. You and your child are engaged on the team for the long haul. The other team members may come and go at random. Don’t be afraid to disagree. If you disagree with the eligibility decision, challenge it by asking for a hearing.

By knowing the laws and procedures, and keeping the interests of your child as your motivation and guide, you will soon be a special-ed pro. You are your child’s best advocate.

Inspiring Blog Post by Tom Henderson: Rivals Give Last Touchdown to Player with Down Syndrome

My daughter, age nine at the time, auditioned, and was selected for a commercial role. The commercial was a PBS advertisement to bring awareness to the archaic conditions, prevalent abuse, neglect, and mistreatment that existed in Texas state schools for the disabled (Good Ole Days. The Arc of Texas. Chiat/Day Inc. PBS Video, 1994).

The final production was bleak and frightening. Produced in black and white, it was reminiscent of Alfred Hitchcock at his best. Even so, we were assured by members of the Texas ARC committee that such dire conditions were very much alive in Texas.

Fifteen years later, it appeared nothing had changed. If more people were aware of rampant abuse, nothing was done to end it.

Is Texas going to step up to the plate, or not?

Arrests have been made and highly publicised. Texas sends the message it will not tolerate abuse of the disabled. Disability groups are pushing for closing state schools and moving residents into smaller, easier to monitor and regulate community settings. They want Corpus Christi State School and 12 others shut down(Elaine Marsilio Contact). Texas lawmakers have approved stringent proactive reforms to stop mistreatment in all facilities for the disabled-private care, group homes and state schools.

The public outcry is heard. Action is being taken. Measures to prevent abuse of the disabled are in force. It appears Texas is determined to stop abuse of its disabled. But, what do I know, I thought the 1994 sixty second commercial would shake things up.

Paul Keene MA SpEd

No, Governor Palin, we don’t need more children with disabilities. We don’t need more neglected, institutionalized, and mistreated children. We do not need more children suffering from mean-spirited caregivers, who leave them wondering what they did wrong, or why they aren’t like other kids. 

Yes, we are in need.

We need compassion for the developmentally delayed, the physically impaired, the emotionally disturbed. We need more people to embrace those with special needs, not more children with special needs.  

Your child and others  coming from homes where their differences are received with genuine love and support is never experiended by many children with Down’s syndrome, cerebral palsy, autism, mental retardation, and other severe handicaps.  These special needs children lacking care are quite visible. Unfortunately, they aren’t always the minority.

They regularly appear in wheel chairs encrusted with dirt and sludge often  smelling of urine and defecation. They are attired in ill-fitting dirty clothing, ripped, torn, missing buttons, snaps and broken zippers.  Dirty faced, unbathed, and ill-smelling, they arrive with fevers, runny noses, and coughs.  

Along with other special needs students, they exit the special yellow bus by walking down the steps or on the lift in their chair. Some require a helping hand, while others use walkers and braces.

Shouting and chattering,  loud and mostly incoherent, they throw kisses and big smiles. They are happy. They have returned to a sanctuary where they feel a sense of belonging. Where people interact with them, and depending on the school or program, perhaps a staff member emits genuine love and gives special care.

No, Governor Palin, we do not need more children with severe handicaps. It is enough that they  go through the physical struggles their handicaps present.  However, no child dependent on others for a lifetime of special care should be at the mercy of those who are mean, hateful, cruel and abusive. 

Let us hope for the birth of healthy children who have the physical and mental capabilities to stand up and speak out when and if they or their rights are abused. Let us endorse healthy children rather than disabled children. However, let’s take care of our disabled children. Let us put an end to shoddy caregiving by parents, institutions, organizations and service providers. Let us legislate stronger laws and tougher penalties for those who mistreat the disabled. Let’s be better watch dogs, more vigilant in our protection for those with disabilities. This is what we need, Governor Palin.