Law and Disorders - by Lori Miller Fox

As the parent of a child with special needs, I have experienced my son being given many labels and diagnoses by both the medical and educational community: physically challenged, seizure disorder, etc., while I, on the other hand, have been given just as many, if not more, labels, albeit unofficially, by everyone from doctors, school staff and relatives, to the nosey checkout lady in the grocery store.  Here are just a few I’d like to share:

Terrible Palsy - A condition in which onlookers and people in the community tell  parents how terrible life must be raising a physically challenged child.   This condition manifests itself through pity and audible sighing of those around you.  Terrible Palsy can be deceiving because you can be asymptomatic for weeks, months, or even years, and then just when you and your family are feeling really good about your child, it can present itself in the form of a condescending pat on the head or a blessing from an anonymous busybody.  Best known treatment is to carry a list of snappy comebacks in your pocket or a large bag of peanut M & Ms.

Shlepilepsy -  A compulsive condition in which parents feel the need to shlep from doctor to doctor and specialist to specialist in order to seek help and find answers for their child with special needs.   The only known effective drug for this illness is caffeine, primarily given to parents to keep them awake while driving to and from appointments.

Oughtism - This condition strongly affects the guilt center of a parent’s brain.  Oughtism is  transmitted by doctors, professionals, and therapists who constantly and relentlessly tell parents “you ought to do this...you ought to do that...” for your child.   The only known treatment is to temporarily unplug your phone, gather information, and trust your own gut to do what’s best for your child.

Oy Vay D D - This condition is usually diagnosed by mahjong-playing lady friends of your mother or mother-in-law upon hearing of your child’s disability.  The best known treatment for this condition is to avoid economically priced restaurants between the early-bird hours of 4:00 and 6:30 pm.

Nonverbal yearning disability - This condition affects many vulnerable parents with dreams for their children. It manifests through knowing what you desperately want for your child, but when no one acknowledges the possibilities, you question yourself as to whether or not you actually spoke your desires out loud.  Suggested treatment is to tape record your school meetings and play the tapes back to an impartial witness.

Dystrustia - A disability that usually flares up at school conferences and IEP meetings, in which everything the team is telling you doesn’t make sense and seems to come out backwards.   The only known effective treatment for this issue is a spy cam or a FOIA  request/documentation.

Pain in the Aspergers - This is a label usually given to parents like myself by school staff.   It is often assigned to conscientious Moms and Dads who advocate strongly for their children with special needs.  The most effective treatment - keep up the good work.

OHI/Otherwise Heavily Intoxicated - A label given to parents so stressed by their child’s health issues that they seek to self-medicate.  My own suggested treatment - substitute chocolate.

Auditory due processing - An issue affecting wronged parents in which everything they are told by the District makes them realize they need to file for Due Process.  The most effective treatment is to talk to a special education attorney ASAP.

Comments

[Daunna Minnich]

Very punny!

[Patricia Felvey]

Lori,
What an outstanding piece of work! How the heck did you think of this...the content really envelopes your title "High Stakes Jesting" and affords all parents of a special needs child a chuckle in lieu of a sunchola to the offending ditz!

[Helen]

Enjoyed reading this - sounds sooooo familiar, as I know it did to a lot of other moms I know who have little ones in special ed!

Also, I noticed others who when asked a question by a child with special needs, the adults (!?) would either totally ignore the question, the child, or would turn to the parent and ask the parent to repeat the question, because obviously poor Susie or Johnnie was unintelligible (when they weren't!) or they had no idea what they were saying.

[Tracy Cleghorn]

I am the editor of the DS newsletter "Down Right Active" located in Virginia. I wanted to know if I can get your permission to use your great and humerous blog in our next edition? I would certainly give you credit.
Thank you, Tracy

[Dianne McNamara]

Lori - This is pricelesss. With your permission, I would like to print this in our parent newsletter.

[Erica Rex]

I am working on a book consisting of first-person stories from parents of children with learning &/or behavioral problems including ADHD, ADD, PDD, depression, panic attacks, autism or any other emotional/developmental/behavioral or learning-related problems. The author of the book, Denise Brodey, is a health writer and mother of a child with ADHD. The book, titled tentatively "The Elephant in the Playroom" will be published in the spring of 2006 by Hudson Street Press, a division of the Penguin Group, an international publishing company.

We’re looking for honesty, self-disclosure and specific experiences that will help other parents survive the difficult reality of having a special needs child and helping him or her thrive. All submissions for the book will say where you are from in general terms, such as “Southern City.” If you choose, your contribution will give your racial identity, child’s age and first name. Each submission should be titled: What I Want to Tell Other Special Needs Parents and include at the top a few sentences on where you live, diagnosis and any diagnostic details (essays should not be case histories of how you have treated or found treatment for your child). Suggested topics include:

• finding a special school
• determining if your child should be medicated
• helping siblings cope
• how you manage your social life/playdates
• how you joined a group that helped you cope
• explaining issues to grandparents
• finding a babysitter/caregiver
• how the stress of raising a child affected your marriage
• how you see your child as a success
• what you learned about parenting from having a special child
• why you are proud of the accomplishments of your child or your family

Names don't have to be used - other than first names, or identifiers of relationship, such as mother, aunt, teacher etc.

Please contact me with some details about your situation if you are interested or you know someone who might be interested in contributing.

[David Cockrell]

Having a special needs child in public school has taught us a lot. We filed formatl complaints with our State Department of Education as well as the Office of Civil Rights. Both investigations found compliance violations including denial a FAPE.We first realized that we were not playing on a level field when the districts attorney addressed a concern that we brought up in an IEP meeting held after the findings. We had noticed that my child's discipline report had "other offences" on it that was not present weeks prior when it was reviewed. The attorney explained that the reason the "other offenses" dated for the first day of school is on the report is because this is how the school documents that your child is on an IEP. The old thirteen letter phrase to describe a three letter acronym story did not seem believable to us. After providing cut and pasted information from my child's IEP minutes that contradicted what was faslely reported to the OCR in August of 2006, my child's school district has committed to paying for a private placement for the Junior and senior year of high school. The school district is currently paying for counseling to address an IEP goal. The goal is to "teach my child how to deal with bullying and teasing". An FBA provided by a third party hired by the district, it was identified that there was a "history of bullying and teasing". In an effort to be politically correct, the report indicates that "it appears that name does not like being picked on by his peers for his tics. To avoid being picked on he would often start fights as an escape behavior". Though it is identified that he is being picked on, any confrontation is his fault. This is the mindset used to determine the only fight that my son was involved in at the middle school. My son had claw marks and bruises on his throat where he had been choked.The administrators filed a Police report indicating that my son had assaulted the other child. The other child was interviewed by Police, My son was not. My son was suspended, the other child was sent to class with an apology from the administrator. The Police report was later amended to include that there were no adult witnesses to the altercation and that my son had recieved injuries to his throat. An Administrator explained to me that these are "defense wounds". The other student had no wounds of any kind.
Parents in SC public schools have no choice but withdraw or pay an enormous amount of money to the limited number of attorneys who will represent an education case. Our school district has had their attorney attend IEP meetings for about three years no since the complaints were filed. The 32 hours of compensatory educational services that were owed by the OCR by Feb 2006 were traded for an online Algbra program that was promised in July 2005 but not provided. As of April 2006, no services had began leaving us little choice but accept the rediculous offer.
The district later agreed to pay for Florida Virtual School with my wife providing instruction.(Wife graduated with honors from Columbia College and teaches in this same school district.).My son has about a 94 average in high level classes which is consistent with what he made the first seven years of public school. On July 19 2007, the assistant superintendent for the school district communicated that the district is now willing to send a paid teacher out to assist. This is the first formal response to a March 2, 2006 medical homebound form that was provided by my son's Doctor 504 days prior. Up until then, we were told that a decision had not been made.
The Director of Special Services actively participates in high level bullying, using her title to attempt to misrepresent facts. She recently reported to the OCR that due to parents refusal of intitial placement offer of emotionaly disturbed and IEP was put into place with X accomodations. We presented the origional IEP minutes that included the proposed schedule in mainstreem classes and that the parents accepted this proposal. We also provided the invitation to the corrective actions IEP meeting that was to be held on July 22 2005. based on the information on the fax line at the top of the invitation the invitation was faxed from a middle school that the director of special services had unilaterally changed my son's placement to. The invitation was faxed on July 19 for us to attend the July 22 IEP. The minutes from this IEP reflect that the Director of Special Services felt that this school (that she had my son's records transfered to and invited only staff from that school to the meeting)was better due to fewer corrective actions.
It seems like there would be limitations on legal services provided for a school that is found to be out of compliance. At best these attorneys should be required to protect the child's educational best interest since they are paid by the child's parent's taxes.

[Colleen F. Tomko]

This is really good stuff. I would like to link to it from http://www.kidstogether.org The other link is to an on-line store with cartoons I draw about disability rights and inclusion! Glad to find others with a sense of humor in this on-going battle!

[A grandmom/advocate]

Thank you sooooo much. You hit the nail on the head for sure. I will share this with my daughter.

[carolyn]

This is great, with your permission I would like to publish this in our parent newsletter. Of course I will give you credit and cite your website.

Carolyn
Family Resource Center at Community Gatepath