Watch ABC News Story: A Call to Stop Restraining Kids at School.

CNN Editorial:

Outlaw child abuse in schools

http://www.cnn.com/2009/OPINION/12/08/miller.mcmorrisrodgers.childabuse.legislation/index.html

U.S. Representatives George Miller (D-CA) and Cathy McMorris Rodgers (R-WA) today introduced H.R. 4247, Preventing Harmful Restraint and Seclusion in Schools Act, to address issues of Restraint and Seclusion in Schools.  The Legislation sets forth minimum protection standards for educational programs which receive federal funding.  U. S. Senator Chris Dodd (D-CT) introduced companion legislation in the Senate.

To view Representatives Miller and McMorris Rodgers press conference click on  the link below

http://edlabor.house.gov/video/12-09-09Press-Conf.wmv

Spring is here and it’s open season for PPT’s and IEP’s. If you’re new to the game, PPT stands for Planning, Placement Team Meeting or PPT. The “team” is comprised of several school staff that directly work with your child and as the parent/guardian you all meet at least once a year to discuss and develop your child’s Special Education – Individualized Education Program or IEP.

 Sounds simple – right? However, we know that this is not the case for some of us. Most parents would rather have a root canal than sit in one of these meetings fighting for basic and reasonable services for our children. I’m sure the feeling is mutual on the other side of the table. For those educators and parents who work well together, give yourselves a pat on the back for a job well done. We need more of you out there.

 In the last ten years, my husband and I have attended our share of PPT meetings. Some havebeen productive, cooperative and outright fun. Other meetings have been contentious to the point the tension was so high the only participants speaking were the Director of Special Education and my husband. Did we always walk away from the meeting with everything we asked for? No. However, we did successfully negotiate what was most important on our list and left the rest on the table for another day.

 This is where I give all the credit to my husband. He is a gifted negotiator and we put these skills to work to obtain the best possible services for our daughter. He once explained it to me like this. Our daughter’s school career could be at least 15 years – do we want to take the first shot in the first year in the first quarter? Or, is it best to pace ourselves, provide as much as we can outside of school and save our energy for the big issues? What items can we reasonably negotiate by ourselves without hiring an Advocate or an Attorney?

 So we began the process of documenting the facts, questioning, and evaluating our daughter’s educational program during the year – constantly checking and questioning the school to make sure that Katie was on track. If a situation developed we could pull back review our facts, ask additional questions (if applicable) and then determine our response in a controlled manner rather than just reacting to everything that came at us.

 Before going into a PPT, the most important thing to remember is knowing what you want, then articulate to the school what action(s) you want them to take and have concrete facts to back up your request.  For example, one year on the first day of school I met our daughter’s “new” paraprofessional. As I’m getting to know this sweet woman, I find out she is 80 plus years old and has been suffering from severe osteoporoses. In addition, she has a “no lift” order from her doctor.

  I’m thinking to myself, okay this means she won’t be able to lift our daughter out of her wheelchair to change her diapers, physical therapy is out and she won’t be able to participate in circle time on the floor. If she does have to lift Katie for any reason and something happens, I’m envisioning both of them on the floor and enough broken bones between the two of them to keep two orthopedic doctors  busy for awhile. We have a big problem. 

 We quickly notified the school principal that for safety reasons (hers and our daughters) my husband and I cannot allow this woman to work with our daughter.  An emergency PPT proceeded – it was a bitter pill for them to swallow recognizing the mistake hiring this woman. They agreed to our request to hire our homecare nursing agency at whatever the current the contract rate was. 

 Our process of evaluating the situation:

What did we want?

 A guarantee our daughter was safe at school and the person filling the position of paraprofessional was qualified. (Note: Safety issues are huge red flags and every school administrator is afraid of being sued because they failed to keep your child and their peers’ safe at school. You will be surprised how fast a mountain moves to resolve “safety” issues.)

What action did we want the school to take?

 Hire our homecare nurse. Prior to the PPT, I had called the homecare agency confirming it was possible for the school to contract with them. I found out that schools routinely contract with homecare agecies and this was not a big deal. 

 What were the facts to support our request?

The school’s newly hired paraprofessional has a preexisting medical condition that prevents her from carry out her duties as a paraprofessional.  Therefore she was not qualified to be our daughter’s paraprofessional.

 What are the consequences to my child (and/or family) if I wait a week, several months or more to address (or not) this problem?

 Katie gets hurt and/or other health problems develop from not being repositioned often.  She’s segregated from her typical peers by not being allowed to sit among them during group activities. Consequences to our family would be my husband has to take additional time off from work for doctor’s appointments and possible hospitalization for injuries sustain in a fall. There is a financial strain because of expenses incurred trying to resolve the health problem/injuries and added emotional stress on the family.

 Our decision: Act immediately – remove Katie from the care of this paraprofessional and request an emergency PPTfor safety reasons. We cannot trust the school to hire appropriate staff – to resolve the situation quickly they hire our homecare nurse.  

 To facilitate and simplify this process, we have created 5 things that will help every parent keep factual records so when a situation occurs resolving it will be  factual and persuasive.

1. Create a home Special Education Journal

 Phone Log

Meeting Log

Event or Situation Log (This is a log that will benefit those parents/guardians whose child has frequent episodes of behavioral outbursts at school. This will give you a way to document school staff need training in positive behavioral management techniques.)

2. Learn how to read your child’s IEP 

Understand what the goals and objectives are. If you don’t understand, ask the school team to explain what they wrote.

Confirm your child is receiving all their modifications/accommodations and support services listed in their IEP. If not, find out why and document what you learned in your home journal. Then go back and address the situation. Call another PPT if you cannot get the problem address outside the PPT. 

Evaluate if your child is making progress during the term. If not, can you figure out why? For example, has your child has been sick for long periods of time; spent more time out of the classroom in the nurse’s office, principal’s office or hallway, having too many behavioral problems that need to be addressed by a behavioral specialist or is the school not doing their job?

 If the school insists that your child has made progress during the school term, and you disagree, ask for work samples, test scores or evaluations that confirm the progress. Don’t be afraid to ask what is their definition of “making progress”. That answer might be different from what you think. 

Note: www.CTdisabilitiesconnections.org will soon be posting a “new” tutorial on the Connecticut IEP page by page. So be on the look out!

3. Get a basic understanding of the Special Education laws; both Federal (IDEA and NCLB) and your state Special Education laws. Some state laws go beyond the Federal laws and hold schools to a higher standard – that’s a good thing! You don’t have to be an expert on this – just the basics are good enough.

4. After the PPT, go home and immediately document in your home journal the facts of what happened. Were all of your concerns answered/addressed? If not, assess your next steps.  Ask yourself these questions:

What is it that I want from the school?

What action(s) do you want the school to take?

What documented facts to you have to support your request?

What are the consequences to my child (and/or family) if I wait a week, several months or more to address (or not) this problem?

5. Control your emotions! Never threaten school officials with a lawsuit and/or take them to due process. Not only does this make it appear that you are out of control but it has minimal impact on the officials since this threat is made often. Save your breath!  I have been guilty of making these comments in the heat of battle. However, my husband reminded me that you never let them know they “got ya.” Instead, you keep your cool, are professional and fight fire with fire.

 How do you handle a contentious situation? By ending the meeting immediately before you and/or others get out of control. When you’ve cooled off, follow up with a letter and/or memo outlining the issues that resulted in the impasse to the person with the authority to change your child’s IEP. Try to see things from the school’s perspective if you can (I know this can be hard). What is the biggest thing they are afraid of? (Child safety is a big fear for administrators).

Understanding the schools perspective (you don’t have to like it or agree with it) but will give you some tools to suggest a reasonable solution to the problem that will be a win/win for both sides. The tenor of the letter should be one of cooperation and reason – not words of hate and anger (even though that may be how you feel). Remember this is all admissible in court so you want to give the appearance that you are in control – trying to cooperate and it’s the school that is being unreasonable. Send additional copies to everyone who attended the PPT/IEP meeting and also send a copy to the senior authority person at that meeting supervisor. For example, if the person of authority was the Director Special Education and their boss is the Superintendent then send a copy of your letter to them as well. (For more information on navigating the Connecticut School System go to www.CTDisabilitiesConnections.org click on Education then click on “Connecticut Education System”).

  If you were mistaken and/or misunderstood the facts, request a response that will correct/clarify your mistake. It’s critical that this be done in writing. District personnel are not dumb – they will figure out quickly that you are converting opinions into written facts and creating a legal trail that will be admissible in court. That’s how you get their attention!

 A few years ago, we had to ask the Special Education Director to no longer communicate with me by phone but only in writing. Every time she spoke, she was rude and disrespectful, she violated IDEA and state Special Education laws and it always ended being my word against hers. It was no secret what our issues were.

 The problem was resolved quickly – however, not by the Special Education Director but by the Superintendent (her boss) and by the school principal. They, as well as the entire PPT/IEP team and Chair of the Town Board of Education, were copied on all of our written communications, which were polite, professional, factual, and direct. The documented legal trail we had created was an attorney’s dream come true – and the Superintendent knew it.  

 In Connecticut, an important statistic to know is that 90% of Due Process rulings favor school districts. Parents are spending tens of thousands of dollars defending their child’s right to a free and appropriate education or FABE and are not winning. So why are the rulings so out of balance? My theory, based on my own research, is that parents might be “jumping the gun” prematurely and don’t develop enough strong evidence to win their cases. Whatever the reason, parents need to document the facts, preferably by using the districts own letters and memos that are in direct contradiction of what’s been written in the IEP and IDEA and state Special Education Laws. We need more success stories of parents prevailing against schools.

 Disclaimer: I am not an attorney. However; I do have a legal assistant degree and worked in corporate law for ten years (five of which involved the litigation arena). If you feel that expert legal advice is essential, please be sure to engage an experienced special education attorney in your area.

Yes, the March madness has literally affected our Legislators when they proposed Raised Bill 1142 “An Act Concerning Relief of State Mandates. Buried in this law is special education legislation that seems to be settling some old scores.

On Wednesday March 18, 2009, a “newly” proposed bill (Raised Bill 1142 “An Act Concerning Relief of State Mandates on School Districts”) was a last minute addition to the Connecticut State General Assembly, Education Committee’s docket. This Bill appears to be an assorted list of grievances from State municipalities, local Boards of Education, Boards of Selectmen, Councils, Superintendents, Special Education Directors and Mayors – all nicely wrapped up in a package titled “saving money.”

Connecticut – don’t be fooled! This is a smokescreen it will ultimately cost tax payers more money at a time when school officials need to be held accountable for their actions.

This Bill addresses the following issues related to Special Education and Regular Education:

 Section: 1        To permanently delay the implementing the new in-school suspension legislation that was passed last

                          year. Section 10-233c

Section: 4        To change the burden of proof in a special education due process hearing to the party requesting the

                         hearing (most often the parents) vs. the school district where it currently lies based on CT state

                         regulations.  

 Section: 5       To terminate educational services for a student on their twenty-first birthday, rather than at the end

                         of the school year.

I testified in opposition to this bill at an Education Committee hearing on Monday March 23. While listening to other individuals testify (e.g. the Mayor of Bridgeport and a CABE (Connecticut Association of Boards of Education) representative, the real issues became clear. This Bill is all about President Obama’s stimulus funds that are specifically targeted for education and the recently passed in-school suspension law that was opposed by organizations like CABE. As Mayor Bill Finch testified, “it’s not fair that millions of dollars go to education and nothing to the municipalities.” The CABE representative stated that his organization is working toward the objective of never having the in-school suspension regulations implemented.

I used to work in Bridgeport many years ago and I truly sympathize with the Mayor’s fiscal budget crisis. The city has had its share of greedy politicians who ran it into the ground and, as a result, school buildings are crumbling from neglect and administrators have failed to provide an adequate education to its students.

This reality was confirmed in a Department of Education 2007 progress report that cited Bridgeport for having failing schools. I know this from my participation in the Connecticut State Advisory Council on Special Education, a group that I currently Chair. It’s no secret many Connecticut cities either barely meet (or don’t meet) basic educational standards set by NCLB (No Child Left Behind) and IDEA (Individual with Disabilities Educational Act).

Who else is supporting this bill? A partial list includes:

·        New Haven Public Schools: Dr. Reginald Mayo, Superintendent

·        Connecticut Conference of Municipalities

·        Connecticut Council of Small Towns (COST)

·        Town of Monroe, First Selectman Tom Buzi

·        Town of Bristol

·        Connecticut Council of Administrators of Special Education (ConnCASE)

·        Senator Toni Boucher (R)– Twenty-Sixth Senate District – Member of the Education Committee

·        The law firm of Berchem Moses & Devlin (who represent many towns and Boards of Education in due process hearings. They have sent out a notice to all school administrators & Special Education Directors asking them to write their Legislators in support of this bill.)

In reviewing all of the written/oral testimony to the Committee, not one parent or organization that works with children and adults with disabilities testified in support of these proposed sections. This includes state agencies such as Department of Developmental Services DDS; and the Commissioner of Education Mark McQuillan. So Connecticut- look closely at who is in supporting this Legislation.

Burden of Proof: The former Education Commissioner, Dr. Betty Sternberg stated in a Circular Letter on February 22, 2006 that she had no intention of revising state regulations because the Supreme Court Ruling of Schaffer v. Weast had no effect on states that already had Regulations on the books. To date, the Department of Education has not reversed its position on this issue. Dr. Sternberg stated:

            “I am not seeking to revise the state regulation to conform to the ruling in the Schaffer case. As the IDEA leaves to the states the management of the hearing system and the law itself is silent on the burden of proof, the standard in Connecticut articulates a valid state policy that school districts are in a better position to defend the appropriateness of an IEP. Districts are in control of following the procedural requirements of the IDEA and of planning and offering an IEP which provides a child with an opportunity to derive meaningful educational benefit, the two criteria courts look at to determine whether an IEP is appropriate.”

It is not enough that the States own Department of Education has gone on record stating they feel the states Regs are sufficient on this issue. Current Department Data indicates that Districts are already prevailing in 90% of Due Process hearings. So why are there so many town Councils and local Boards of Education so opposed to this Regulation? I believe it’s related to another issues entirely, NCLB (No Child Left Behind) requires states to impose in-school suspension as another alternative to out of school suspension. 

In-School Suspension Legislation: When this law was first passed in 2007, it received overwhelming support, including that of Governor Rell. The law was designed to do the following:

·        Improve student discipline by reducing incentive for students to misbehave (“suspensions as vacations”);

·        Afford school administrators appropriate discretion and autonomy;

·        Improve academic performance and graduation rates; and

·        Save Connecticut’s towns and cities money by reducing juvenile delinquency.

            (Connecticut Voices for Children: public statement March 23, 2009)

Connecticut Voices, explains that: “Under the new law, school administrators may still out-of-school suspend students who are so disruptive to the learning process or pose such a threat to persons or property that they need to be removed from school. Moreover, school administrators retain the authority to determine when that threshold is met. The only thing the 2007 law prevents is the –out-of-school suspending of children for mere board policy violations or other infractions that administrators themselves do not think are so disruptive or dangerous as to warrant their removal.”

Many school districts and organizations opposing this legislation have used scare tactics to frighten parents and others who would like to see this law go into effect. They claim that this is an unfunded mandate but, in reality, this simply is not true.

            “The law states merely that if a school chooses to suspend a student, that suspension must be “in-school” unless the administration determines that “the pupil being suspended poses such a danger to persons or property or such a disruption of the educational process that the pupil shall be excluded from school during the period of suspension.”

            (Connecticut Voices for Children: public statement March 23, 2009)

Connecticut Voices further details recent data on Suspension Practices in Connecticut Schools which should be cause for concern.

1. On any given day in the 2006-2007 school year, approximately 1,400 children were excluded from Connecticut schools as a result of having been suspended fro a disciplinary offense.

1. The percent of students suspended in the 2006-2007 school year varied dramatically among districts, ranging from 1% to 22%, with a state average of 7%.

1. In 2006-2007, nearly two-thirds of suspensions were for “school policy violations” (predominantly insubordination/disrespect, obscene language and/or behavior and attendance violations), while the remainder were for “serious disciplinary offenses” (such as fighting/battery and physical/verbal confrontations)

1. Schools in districts with lower socio-economic indicators suspend substantially higher percentages of students than schools in districts with higher socio-economic indicators.

1. Black and Hispanic students were suspended at far greater rates than Asian and white students. In the 2006-2007 school year, the suspension rates among black and Hispanic students were at least triple those of the white students: 18% and 13% respectively. By contrast, the suspension rates among Asian and white students were 2% and 4%.

1. Special education students are suspended substantially more frequently than their peers. In the 2006-2007 school years, 15% of special education students were suspended compared to only 6% of regular education students.

1. Students with low academic performance are suspended more frequently than their peers.

1. Students in all grades, including kindergarten, are suspended though the greatest numbers of suspensions tend to happen in the ninth grade. More than one in five (22%) ninth grade students were suspended in 2006-2007.

1. Connecticut’s overall suspension rates and minority suspension rates have remained constant for the last two years. However, the percentage of special education students suspended/expelled for a cumulative total of more than 10 days has jumped dramatically in the last four years.

1. Connecticut rates 2^nd highest in the nation in the percentage of special education student suspended or expelled for a total of more than ten days and within the top ten in the nation in terms of the disproportionate representation of minority students suspended. This is according to data from the 2003-2004 and 2005-2006 school years respectively.

Age Twenty-One: Educational services for a student would be terminated on their twenty-first birthday rather than at the end of the school year. Interestingly, the CABE Representative offered gave no reason other than financial for their opposition to this section. However, during the lengthy questioning by several Education Committee members who were clearly repulsed by several of his comments, he finally admitted that he had no objection if a student remained in the educational program until the end of the school year.

Again, from the tenor of this organization’s comments, this has nothing to do with funding. If it did, he would have not relented to changing his position on allowing twenty-one year old special education students finish the their school year and graduate with their class.

As a parent of a child with a disability, I ask all parents in Connecticut to please oppose Raised Bill 1142 and to let your voices be heard loud and clear! These issues have nothing to do with funding. Our current economic problems are just being used as a convenient excuse for local school boards and school administrators to avoid accountability, which is what this is really about.

Time is of the essence on this issue – please let the Education Committee know you are opposed to Raised Bill 1142:

Education Committee

Room 3100, Legislative Office Building

Hartford, CT 06106

Phone: 860-240-0420

Chairmen: Senator Thomas P. Gaffey (D) (Gaffey@senatedems.ct.gov ) (860) 240-0425

                  Representative Andrew M. Fleischmann (D)                

      (Andrew.Fleischmann@cga.ct.go ) (860) 240-0429

Sen. Toni Boucher (R) Toni.Boucher@cga.ct.gov                                 (860) 240-0465

Sen. Sam S.F. Caligiuri (R)     Sam.Caligiuri@cga.ct.gov                       (860) 240-8826

Sen. John W. Fonfara (D)         Fonfara@senatedems.ct.gov                 (860) 240-0043

Sen. Andrew J. McDonald (D) McDonald@senatedems.ct.gov            (860) 240-0528

Sen. Andrea Stillman (D)          Stillman@senatedems.ct.gov                 (860) 240-0589

Rep. Jason W. Bartlett (D)       Jason.Bartlett@cga.ct.gov                    (860) 240-8356

Rep. Matthew Conway (D)      Matthew.Conway@cga.ct.gov              (860) 240-8507

Rep. Michelle Cook (D)           Michelle.Cook@cga.ct.gov                  (860) 240-8585

Rep. Paul Davis (D)                  Paul.Davis@cga.ct.gov                         (860) 240-8581

Rep. Henry Genga (D)              Henry.Genga@cga.ct.gov                     (860) 240-8534

Rep. Marilyn Giuliano (R)         Marilyn.Giuliano@housegop.ct.gov       (860) 240-8700

Rep. Auden Grogins (D)           Auden.Grogins@cga.ct.gov                  (860) 240-8585

Rep. Gail Hamm (D)                 Gail.Hamm@cga.ct.gov                        (860) 240-8549

Rep. Deborah W. Heinrich (D) Deborah.Heinrich@cga.ct.gov              (860) 240-0272

Rep. Maryanne Hornish (D)      Maryanne.Hornish@cga.ct.gov             (860) 240-8585

Rep. Tony Hwang (R)              Tony.Hwang@housegop.ct.gov            (860) 240-8700

Rep. Karen Jarmoc (D)            Karen.Jarmoc@cga.ct.gov                   (860) 240-8585

Rep. Susan Johnson (D)           Susan.Johnson@cga.ct.gov                   (860) 240-8387

Rep. Themis Klarides (R)         Themis.Karides@housegop.ct.gov        (860) 240-8700

Rep. David Labriola (R)           David.Labriola@houssegop.ct.gov        (860) 240-8700

Rep. Timothy LeGeyt (R)         Timothy.LeGeyt@housegop.ct.gov       (860) 240-8700

Rep. Matthew Lesser (D)         Matthew.Lesser@cga.ct.gov                (860) 240-0182

Rep. Joan Lewis (D)                 Joan.Lewis@cga.ct.gov                        (860) 240-8585

Rep. Christopher Lyddy (D)     Christopher.Lyddy@cga.ct.gov            (860) 240-8585

Rep. Douglas McCrory (D)      Douglas.McCrory@cga.ct.gov             (860) 240-8515

Rep. Steven Mikutel (D)           Steven.Mikutel@cga.ct.gov                  (860) 240-0082

Rep. Patricia Miller (D)              Patricia.Miller@cga.ct.gov                  (860) 240-8752

Rep. Sandy Nafis (D)               Sandy.Nafis@cga.ct.gov                      (860) 240-8585

Rep. Tom Reynolds (D)            tom.reynolds@cga.ct.gov                     (860) 240-8585

Rep. Terrie Wood (R)              Terrie.Wood@housegop.ct.gov            (860) 240-8700

Several weeks ago, the sad news of Jett Travolta’s death made headlines with news agencies broadcasting that a seizure caused his death. I was troubled by the media’s over dramatization of this horrible tragedy, especially the allusions that Jett’s death might be his parents fault.  To me, that was a cheap shot in an attempt to create a “celebrity sensationalism” storyline, whether there were any facts to support it or not.  

However, I really came unglued by an “entertainment” reporter’s interview of the EMT who transported the Travolta family to the hospital. She asked if Jett had froth and foam coming from his mouth and nose as if to portray the impression that people having a seizure typically appear “possessed”.  

Is this really surprising in view of the media’s fixation on sensationalism and the ratings driven need to be first with what “people” want to know?  The “news entertainment” media often go to extremes to tell a story and it appears to have no qualms about stretching the facts for “the effect.” In this case, however, this reporter went too far.

Miss “Entertainment” Reporter needs to be informed that most people who have a seizure don’t look like they’re in the midst of an “Exorcist” like demonic possession. Had she bothered to conduct a quick Internet search on the subject of seizures (e.g. on the Epilepsy Foundation or WebMD websites), she would have obtained an accurate source of background information for her interview. It would have been time well spent on her part and prevented her from coming across as an “air-head” on the subject matter.  

I understand that “spinning” a story can do wonders for ratings. However, associating a seizure with body jerking foam frothing creates an unflattering and unfair stereotype of individuals with a seizure disorder. This incorrect perception unnecessarily adds to the general public’s fear of people with seizures that results from their lack of knowledge.  So, please stop describing someone having a seizure with those kinds of images and instead rely upon the facts – as “unsensational” as they may be. 

My daughter was diagnosed with epilepsy at six months of age as a result of structural damage to her brain. She had a stroke prior to her birth and 80% of her right brain encapsulated into liquid cerebral fluid. By her first birthday, she was having over 200 infantile and myoclonic seizures a day.

At first, the seizure activity was no more than subtle head movements to the left and back and forth eye movement and we hardly noticed it.  The good news was that, despite all the erratic electrical activity in her brain, she could still eat by mouth, had some use of her hands and responded to people she knew.    

As the years progressed, I have had my share of people overreacting when learning that my daughter has an uncontrolled seizure disorder. School official’s demands have ranged from wanting direct access to Katie’s neurologist (which I do not advise) to suggesting that I follow her school bus in my car carrying medication to administer in the event she had the “big one”.

There are over 3 million Americans who suffer from Epilepsy and seizures. Approximately 200,000 new cases of seizures and epilepsy occur each year and 10% of the American population will experience a seizure in their lifetime (Epilepsy Foundation – Epilepsy and Seizure Statistics). Treatment decisions will depend on the type of seizure diagnosed as well as the possible causes. My daughter has a structurally damaged brain so that was easy to figure out but, in other situations, it might be genetic. 70% of cases have no known cause and are labeled as “Idiopathic epilepsy” – Latin for “of unknown cause.”

If there is a family history of seizures, including “febrile” (fever-caused) or childhood seizures, they could go into remission as the child ages. It’s also possible that the reverse could happen with a child developing seizures when they enter puberty. According to the Epilepsy Foundation’s website, more research is needed to determine the root causes of some of these forms of epilepsy.

Everyone should be aware of a condition known as “Sudden Unexpected Death in Epilepsy” or “SUDEP.” It’s defined as a sudden, unexpected, non-traumatic, non-drowning death in an individual with epilepsy, witnessed or un-witnessed, in which postmortem examination does not reveal an anatomical or toxicological cause for the death. (“Sudden Unexpected Death in Epilepsy – eMedicine article May 17, 2006). The fact that doctors can’t predict if this can occur in a person with epilepsy is a concern.

In 1993, the US Food and Drug Administration and Burroughs-Wellcome attempted to develop criteria for SUDEP. Per the eMedicne article, the following criteria are now used in “most” SUDEP studies (meaning that they’re reduced to a lot of guessing):

·        The patient has epilepsy, which is defined as recurrent unprovoked seizures;

·        The patient died unexpectedly while in reasonable state of health;

·        The death occurred suddenly (i.e. within minutes);

·        The death occurred during normal and benign circumstances;

·        An obvious medical cause of death could not be determined at autopsy;

·        The death was not the direct result of a seizure or status epileptics (a state of persistent seizure).

The typical age range has been in patients who are in their third or fifth decade (i.e. age 20-40 years), with a higher incidence at the younger end of the range. The article further indicated that SUDEP is very rare in children.

Is this a possible explanation for the death of Jett Travolta? We will probably never know unless John Travolta and Kelly Preston release that information. I have no direct knowledge of the details surrounding Jett’s death other than what was reported by the media. However, my uneducated guess is that his death was the result of the head trauma he sustained when he fell vs. the result of a seizure.  

I recently received a Christmas solicitation letter from the Connecticut Epilepsy Foundation. In it, Hedy Kelly shared her heart breaking story from this past September of the loss of her teenage daughter Kim. Kim had just been diagnosed with epilepsy eight days before she passed away in her sleep. Hedy recounts those painful days as they learned of her condition and the ensuing “merry-go-round” trying to figure out how to best treat her daughter.

As I can personally attest from the early days of Katie’s treatment, it was very difficult and scary waiting helplessly while the doctors determined the proper mix of drugs. However, a diagnosis of Epilepsy and seizures should not be viewed as a death sentence either. Much more research and development work remains to identify effective treatment regimens and the lack of funding is always an impediment to achieving progress and solving the problem. Current seizure treatment is often a “hit or miss” proposition with some treatments working and some not. However, children shouldn’t have to die until epilepsy research receives the huge cash infusion needed to find more effective treatments.

We have tried virtually all seizure treatment options, including homeopathic remedies. However, it has been years since any physician has alerted me to any new seizure treatments for Katie and there doesn’t appear to be much out there at the moment. Despite this reality, I continue to be hopeful and pray for that “miracle treatment” to come along.

In the meantime, it would be nice if the media stopped portraying a person having a seizure as some demonic possessed foam frothing monster. It would be even better if TV dramas stop depicting medical personnel holding down a person having a seizure and shoving a tongue depressor wrapped in gauze and tape in their mouth (which I actually saw recently on a cable hospital drama).

One would think that, in our “advanced” and “politically correct” 21^st century society, there would be a greater awareness of and sensitivity to the many disabilities that affect such a large portion of the population. Unfortunately, as Jett Travolta’s death reminds us, much work remains to be done before we get to that point.

Happy New Year! Praise the Lord 2008 is over and now we can look forward to a new year with expectations of good health and prosperity for all.

Katie was discharged from the hospital on November 6, 2008, nineteen days after she was rushed to the emergency department at the Children’s Hospital. Since then, she has been stable and making progress but she is still not “out-of-the-woods”. Her bi-weekly CBC blood work continues to improve but is still not normal. Her surgical incision is closing from the inside out and now requires wound changes once a day. Her surgeon has ordered six more months of continuing antibiotic treatment – three months administered via IV twice a day and then three months administered orally.   

We have a standing weekly appointment with the surgeon who monitors blood work and modifies wound dressing techniques as necessary. Each week it’s a new ball game. We started with the “wound vac”, which required changing by a “certified wound nurse” three times a week. After four weeks of this, the deep muscle tissue started to fill in unevenly and the “leak” alarm would invariably go off when I had no nursing coverage. The most frequent time was on a Saturday or Sunday morning. I was getting a bit cranky and the last thing I wanted to do was a wound vac change at 2:00 a.m. to fix a leak.

My short temper with the wound care staff and the uneven tissue growth resulted in the wound vac being discontinued after four weeks. It was time to re-think the process and they came up with packing the wound cavity with gauze impregnated with Dermagram-B Cream. After watching the staff pack her spine I thought this is going to be a no brainier process and much easier than the wound vac.

My first attempt changing the wound vac dressing reminded me of an old “Calvin” cartoon where Calvin ended up with more wrapping and tape on him than on the package. It was not much different with me. I had pieces of the dressing film attached to everything including Katie’s hair, bed and my husband who was assisting me. It was a mess. However, I did get a good seal around the wound and that was the goal. It was wonderful to free Katie from that machine which made so much noise.

Since then, we progressed from Dermagram-B Cream to several different types of dressings changes depending on how the moisture content of the incision. For example, we used Mesalt, wet-to-dry gauze and Telfa bandages. I’ve also become quite good at monitoring how a wound changes during the healing process, with color and odor being the two of biggest indicators that something is wrong. 

Katie’s strength and endurance has improved in the last month. She has been sitting in her wheelchair for more than three hours a day – this is real progress! Nutritionally, she is doing well enough and is gaining weight. This was a big concern this past year before her surgery. Katie’s Pediatrician felt the scoliosis was so severe that it was interfering with her ability to properly digest food and therefore she was not receiving optimal nutrition.  

During her second hospital admission, we were surprised to learn that, in addition to a raging infection, she might also have a “sick thyroid” as her protein and potassium levels were well below normal. We noticed that she didn’t respond when poked with needles. I was told that our brains send out a chemical which produces a “fight or flight” response to pain or stress. In children like Katie, crying is a normal response when in stress or in pain. This wasn’t happening at all when painful procedures were being done on her. We were concerned that there was another underlying problem developing.

However, adjustments were made to her diet – e.g. – amino acid powder has been added to her formula and vitamins and nutritional supplements have been restarted. We are excited that she is gaining weight steadily but I’m still concerned that she is still missing something nutritionally. She is now experiencing an unusual amount of hair loss as well as muscle pain when stretched or massaged. As of yet, no new dietary changes have been ordered.    

We therefore continue to wait and monitor. At the end of January, the Vancomycin will end marking the halfway point of the treatment and Katie will then start on three months of oral antibiotics. Bi-weekly blood work will continue checking the “CRP” (C Reactive Protein) and Sed Rate (Erythrocyte Sedimentation Rate) levels. When these levels reach and are maintained within normal ranges, the surgeon can declare victory. However, if these remain high, this means that the infection is still active. The only alternative would then be another surgery to remove the rods from her spine and we start all over again. I don’t want to think about that prospect.

In the coming weeks, I will be changing the focus of this blog to a discussion of topics in the news relevant to parents of children with disabilities. These will include epilepsy, ethical issues associated with physician discussions of end-of-life planning and educational topics etc. So – stay tuned!

Our deepest sympathies go out to the family of John Travolta and Kelly Preston on the loss of their beloved son Jett. Words cannot describe the pain and sorrow that a parent feels when they have lost a beloved child. Our prayers are with you during your time of grief.

November 2, 2008

We’ve been on a roller coaster ride for days as we work hard to stabilize Katie in the ICU. On October 11, Katie was discharged from the children’s hospital and we thought that she was well on her way to recovery. However, eight days later, we found ourselves back in the ICU and praying like hell the problem was not her back – that Katie’s fever and reduced urine output was due to a bladder infection. Unfortunately, this was not the case. I was told Katie was in septic shock and that this was more than a bladder infection.

In the ED, it was discovered that the Band-Aid over the chest tube exit wound from her first surgery had pus on it. It was a small amount and no one seemed initially concerned this was the source of any problem or infection. The incision on her back looked clean and was healing nicely with no signs of infection. However, after a few days in ICU and no identified source of infection, the surgeon reluctantly sampled a small pocket of fluid near the incision site. I was told it was normal and, at first glance, it did look sterile to the naked eye. However, a day later, the results came back positive for a staph infection and possible meningitis resulting from the surgery. (Note: the meningitis is unconfirmed, as the surgeon did not do a spinal tap. During the wound debriding they found pus on the Baclofen pump catheter which was attached to the spinal cord. It’s assumed her spinal fluid was compromised.)  

She therefore had to be taken back to the operating room to have her spinal incision opened up to clean out the infection – not a good thing. When Katie returned from the operating room, she was attached to a device called a “wound vac”. This is a machine that pulls accumulating fluid/blood/pus from the open incision via two plastic tubes that are inserted through sponge like material packed into the wound and covered with a clear plastic film

Katie’s surgeon indicated that this infection was a deep one and she returned to the operating room three more times to have her wound washed and cleaned with a special antibiotic solution. I now wondered if the source of the infection came from the first surgery in which 4 discs were removed via her chest cavity.

After this, the “wound vac” sponge/dressing changes were done in Katie’s bed after pain mediation was administered. The first time I saw the bandage change at her bedside, I was overwhelmed and slowly knelt to the floor to quietly whisper to Katie that she was O.K. I wasn’t O.K. – but Katie was going to be. I knew it was going to be hard to watch but I also knew that I had to be trained to change this bandage when we got home. However, when I saw how deep her wound was and realized that I could actually see to her spine, I didn’t know if I could do this.

When I was 18, I took an EMT class that required me to work 48 hours in an LA hospital Emergency Department – it didn’t go well. At 18, I wasn’t prepared to see the things I did and I felt totally incompetent. Thank goodness that my job at our local ambulance company was a dispatcher in the office and I was not required to go out on calls. Twenty seven years later, I faced the same feelings of incompetence.

As a teenager, I knew that being a first responder was not a game or a way to feel important. This was serious business and I was afraid of making a mistake that would either hurt or even kill someone. Now, I look at my daughter and realize that there is no one else but me to do this because my home-care nurse is not allowed to change the bandage because she is not “certified” as a wound nurse.

Katie did quickly respond to the antibiotics and, once the point is reached where her blood pressure and fever are stabilized, we will be able to go home to continue her recovery. Of course, all of this is contingent on my learning how to care for a deep wound and administer IV antibiotics at home. I’m scared to be given so much responsibility – one mistake and I could jeopardize my daughter’s life.

I expressed my fears to Katie’s Pediatrician and to her orthopedic surgeon. They assured me that I’m not doing this alone, that I will have help and not to be afraid. The surgeon explained that it is overwhelming to see such a deep wound but, over time, I will get used to it and soon be moving the nurses out of the way to change the bandage myself. However, after the Pediatrician observed a dressing change, she realized that this would be too much for me. She therefore ordered a “certified wound nurse” to come to the house three days a week to change Katie’s bandage. She also ordered two of her office nurses to personally observe the changes as, in the event that the wound nurse would ever have to cancel, they will be my back up.  

At this point, there is nothing to do but roll up my sleeves and do what needs to be done.

Katie was discharged from the hospital on November 8, 2008

Katie has completed both phases of a two stage spinal fusion surgery. Both surgeries were successful and now we wait for Katie’s body to catch up with itself. Because of the trauma associated with this surgery, fluid retention and respiratory problems are typical and unfortunate side effects.

At this stage of Katie’s recovery, her body continues to retain more fluid than the doctors expected. It’s become a balancing act between providing medication to help drain the fluid while making sure that her blood pressure stabilizes (as the medication can cause it to drop). Her x-rays continue to show improvement, but not enough to remove the chest tube and take her off the ventilator. So we continue to wait.

Katie has been hospitalized approximately 30 times thus far in her 12 years of life. One would think that after these numerous admissions, we would have learned how she responds to treatment. While, for the most part, this is true Katie always manages to throw us a curve ball and surprise us.

With every planned hospital stay, the treating doctor will always estimate the length of the hospitalization. For this fusion procedure, approximately 10 days was the projection. However, knowing Katie as we do, we always add an additional 3 – 5 days to allow for minor unexpected problems.

As it stands today, it looks like we have to adjust the additional expected days from 3-5 to 5-10 for a total of number of 15 – 20 days. This results from her body not eliminating enough fluid to make a significant difference in her blood pressure and independent breathing so the ventilator can be stopped.

A Lesson Learned:

Within the first 24 hours post surgery, we discovered that Katie is severely allergic to a liquid called Benzoine. This liquid was painted around her mouth area so the breathing tube could be taped to her face. The resulting reaction was so severe that 2nd and 3rd degree chemical burns resulted and her face swelled to twice its normal size. It looked more painful than the just completed chest surgery.

After asking several times if anything could be done in lieu of taping her face, I was told by several staff Respiratory Therapists that no other alternatives were available. Then two “traveling” Respiratory Therapists came on duty and decided to brain storm other options to enable the removal of the tape and washing off the Benzoine from her face.

They were aware of a strapping system that didn’t require taping the face. On a hunch, they called a nearby adult hospital and explained the situation. Within the hour, the strapping system was delivered and to our excitement and relief, it worked perfectly.

Early Monday morning, a parade of Department Managers, Supervisors, Nurses and Doctors visited our room to check out the new “no tape” vent tube holder. Katie’s nurses reported that they were pleased with the holder as it was easier to do mouth care and suction her. However, I overheard a few of the “younger” respiratory staff therapists state that they were a little skeptical about the new holder and, if faced with the same situation again, would likely not utilize this for their patients. They were more comfortable with the traditional taping method they had been using.

This was disappointing to hear. In many instances, when faced with a difficult challenge, there is a need (and often a benefit) to step “outside of one’s comfort zone” to try something new. What happens to the next child who comes through this hospital requiring an unusual solution to a problem?

My hope and prayer is that someone will remember our Katie, step outside their comfort zone and try something different.  

It is day four and Katie is currently stable and comfortable. They took out four of the desired six discs on Thursday and on Tuesday her spine will be wired to a stainless steel rod.  

Katie did very well the first 24 hours after surgery and was able to come off the ventilator. However, in the middle of the night she developed some problems caused by some fluid shifts in her chest cavity which required her to be put back on the ventilator. This was a disappointing setback as the last thing we want is for Katie to become dependent on a ventilator. This set back has resulted in her remaining in ICU until after the second surgery.

So far all the preplanning is paying off. Several of her regular doctors are checking in with us and following Katie’s progress closely. The nurses and attending physicians are monitoring her closely and are ready to answer/explain/clarify any questions we have. Each nurse/doctor/support staff assigned to Katie understands her medical history and why we are here. It has not been necessary for me to repeat myself to every person who walks through her door. These are all good signs.

During the intake process when we first arrived here, I was pleasantly surprised the hospital had recently installed a new computer system that stores all of the patient’s medical history. To illustrate how detailed this system is the nurse showed me a few screens where someone has input “Katie at a Glance – Statistical Fact Sheet” which includes a list of our pets among other things.

She assured me that it was no longer necessary to repeat myself to every department. It’s now all in the computer. This is all good news and I’m glad after 12 years of coming to this hospital they are finally keeping a computer file on repeat customers such as us. But just in case, I’ll keep giving them the updated paperwork.

The current game plan is to continue monitoring her vital signs. In preparation for tomorrow’s surgery they have ordered another unit of blood and decreased her pain medication a small amount. Once she’s done with surgery, they will increase it again to the higher level. Now there is nothing to do but wait and try not to think about tomorrow.

The blood has been tested, x-rays and photographs of Katie’s spine have been taken and medications have been reviewed – it’s show time. Well, not exactly, as there are still a few more important things that need to be done. When preparing for any hospitalization, it has been my experience not to assume that all the necessary information has been transferred and/or communicated to the right people and placed in the proper medical file. Never, ever assume!

 Alert Primary Care Physician and Specialists of the Upcoming Surgery:

My next step is to work on my check list:

First, I will notify her Pediatrician as having her primary care physician (PCP) involved during her stay will help us when we go home. How will this help? When a child is released from the hospital, the discharge instructions usually state to “call the surgeon for this and this – anything else contact your pediatrician/primary care physician.

Hospitals are notorious for not notifying primary care physicians that their patient is in the hospital until a week or more after the fact. I experienced the extent of poor communication at the children’s hospital we frequent the first time Katie was admitted for observation by one of her specialists. Her pediatrician had not been notified and had no idea she was supposed to monitor the hospital’s post discharge care plan. The care plan was pretty involved and required daily visits by a homecare nurse to monitor Katie’s vitals signs while she was on a very serious drug for 30 days. We therefore agreed that, in the future, I would call before any scheduled hospital admissions.

Another reason to involve your primary care physician during your stay is to serve as an advocate for your child if there is a care and/or treatment problem with hospital staff. Further, the PCP can also help explain and/or clarify recommended treatments to assist in the decision making process as well as help coordinate post discharge specialist care. Sometimes, it can get confusing as to who is who and who is doing what and the PCP can help sort things out.

Next on the list is notifying specialists. The decision on which ones to contact will depend on their specialty. For example, this current surgery will involve Orthopedics (surgeon in charge of Phase 1 & 2 surgeries); Neurology; Neuro-surgery (2nd surgeon involved with Phase 2 surgery ); Urology, Gastroenterology and Pulmonology. These specialists monitor Katie on a regular basis and know her medical history. Several, but not all of them, will pay her a courtesy visit and monitor her recovery.

If a bedside consultation is necessary, the appropriate specialist can address problems quickly. This then eliminates the need for the attending physician (the hospital doctor assigned to your floor) or the “Resident” (student doctor/doctor in training)) to make the referral through the hospital service.

A little planning ahead saves Katie unnecessary pain and discomfort because the doctors who know her best are right there following her progress and adjusting her care plan accordingly.

Be Prepared to Tell the Medical Staff What “Normal” Looks Like:

During a recent hospital stay, I heard the frequent question – “Is she always like this?” Katie is nonverbal and has limited movement in her arms and legs. When she is in the hospital, she usually lays there motionless looking around, crying and/or sleeping. This behavior is commonly misunderstood as “normal” for her. However, this is not so as, at home Katie is very expressive, responsive and alert.

To “enlighten” people about how special Katie is to us and describe all the wonderful things she can do (yes, Virginia, my daughter has a life), I created a brief two page  outline of the most important information /vital statistics along with a brief bio. An overview is provided of Katie’s home life – e.g. – the clubs she belongs to, her favorite activities, her current educational status and her pets. This will give the attending doctors and nurses an idea of what “normal” is for Katie.

 Completed Check List:

• Notified and updated her Pediatrician and the specialists in charge of the systems and/or organs involved in the surgery. 
• Notified the surgeon in charge of our absolute policy that we never leave our daughter unattended while in the hospital for any reason (other than being in surgery). We ask that the person in charge of the Recovery Unit be made aware of this and that the necessary allowances/arrangements are made for us (So far, we have never had a problem with a hospital refusing this request).  
• Updated her current medication list, including nutritional supplements and over the counter medications. I make multiple copies to give to attending doctors and nurses at all stages of her care (never, ever assume that the complete medical file and necessary papers are passed from one department to another.)
• Updated her historical medication list. This includes every medication prescribed since birth; thereason it was prescribed; the doctor who prescribed the drug; the dates started/stopped; the dosage amounts, the length of the prescription; and if stopped, the reason why (e.g. drug reaction, no reaction, treatment completed etc.). Multiple copies are made to give to attending doctors and nurses at all stages of her care (never, ever assume the complete medical file and necessary papers are passed from one department to another.) 
• Updated the list of all her hospitalizations and surgeries; updated “Katie at a Glance Vital Statistics Fact Sheet” and updated other data records, such as bladder infection logs / seizure logs etc. Again, multiple copies are made to give to attending doctors and nurses at all stages of her care (never, ever assume the complete medical file and necessary papers are passed from one department to another).
• Notified family, friends, church office and requested prayers for healing. Asked a close friend to be our family spokesperson in the event things get too overwhelming. This insulates us a little and keeps our friends and loved ones informed on a continuous basis without my husband and I having to make a lot of calls or send e-mails.

 Now, we’re ready to go. Please keep us in your prayers during this time!