Dani’s Story: Thank you, Dr. “T”
It was difficult for all three of us, but especially hard for Mom and me. Among other things, Mom’s blood pressure skyrocketed due to toxemia. I entered the room, bruised and weak.
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.
Dani’s Story: Unexpected beginning
Hi, my name is Dani. Dad is keyboarding for me since I’m a bit slow in the department of fine motor skills. I have cerebral palsy, and although I’m mostly affected from the hips down, writing and typing are difficult at best. Let’s just say that I wear glasses instead of contact lenses because I don’t want to put my eye out. (Kind of like Christmas Story, huh?)
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.]
Is your child sitting in front of the television at school?
Is your child sitting in front of the television at school? Studies show that children in day care and other child care facilities are sitting in front of television sets two or more hours each day. Consider the following statistics:
- 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 my child’s special needs being met?
Your child’s needs are not being met if the goals and objectives in the IEP aren’t followed.
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.
Can you trust your child’s school?
Transparency may be the latest buzz word, but it isn’t always practiced. Today, as much as ever you need to be proactive with your child’s education. Bottom line, it’s your job to know, first hand, what is going on at school. Not by second and third source information.
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.
Getting Started with Special Ed
Special education is overwhelming for first timers. Your best bet is to take a proactive role. Keep ahead of the game by actively researching. Ask questions, and get answers. Whether you are new to special education or not, become familiar with laws and the differences in the role they play in your child’s future. Two major laws to become familiar with are IDEA (Individuals with Disabilities Education Act) and ADA (Americans with Disabilities Act). Section 504 of the Rehabilitation Act of 1973 is a third law requiring attention.
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.
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