I have a small update, well large but heh, enjoy.
Monday (Tomorrow) The Today Show is doing a large peice on us, and more and this time FCPS has finally decided to speak (Prolly cause its a large news cast) I would watch, you will get both sides, clearly I am curious how they will explain how VDOE trumps ADA, should prove interesting Airs on Tuesday.
Also I thought about my last post, please see it below.
We started our epilepsy journey 4 years ago. At that time we were not aware Andrew was having seizures. The doctor ran extensive tests in 2006 and discovered Andrew was having seizures. Prior to that we, his doctor, and teachers believed he had ADHD, along with some minor learning disabilities.
I joined the Army in 2006 to find some direction and purpose in my life. While in basic, Andrew was diagnosed with LGS (Lennox Gastaut Syndrome). We were not ready or prepared for this diagnosis. My wife, Nancy, handled things for several months while Andrew slipped further and further away from us.
In 2007 we moved twice and once again in 2009 before my current assignment at Fort Belvoir. These seizures, Special Education, and a lack of understanding these seizures both in school and at home, caused Andrews’s education to fall further and further behind.
Because of the intense and frequent seizures Andrew was unable to learn in a school environment. In late 2009 his doctor prescribed he be removed from school and be Homebound instructed. The doctor also prescribed a Seizure Response dog, and the surgical implant of a VNS (Vagal Nerve Stimulator) due to Andrew’s lack of response to the several potent adult medications. The medications failed reduced or prevent these debilitating seizures.
VNS is not some quick fix decision by his doctor. VNS is a very serious surgical procedure that minimizes seizures. It is a last resort and is used in kids who have had no relief from medication.
When we tried to find an agency that trained Seizure Response dogs, and that would speak with us. Most had 2-6 year waiting lists. We were also told most people with LGS did not make it through their teen years, we were scared, scared parents at a loss of what to do and how to protect our son.
We discovered an agency that trained dogs for seizures in NY, however it was expensive, and we started a charity called The Andrew Gordon Stevens Foundation. The original goal was to get Andrew his dog and be done with it. However, more and more soldiers and families in need started contacting us so we expanded it after raising enough for Andrews dog. The foundation is now raising funds for other service members that need Seizure Alert Dogs.
Epilepsy is a very frightening and misunderstood disease with no real cure. Living with it and watching your child suffer from it is a horrible experience I would wish on no one, not even my enemy.
As a soldier and a father the hardest thing is feeling powerless to help the ones you love. When Andrew’s service dog came into his life, it was the first time we saw a reduction in his seizures, and the first time something other than a machine could detect his seizures before he had them. That gave us an extra and effective weapon against epilepsy and Andrew’s seizures.
We finally had a way out of the darkness. A chance to help Andrew. We want everything Andrew is entitled to so he may have as normal a life for as long as he can. This is what any loving parent wants.
Andrew’s service dog was denied entry into his school in Fairfax county public schools (FCPS). Denial began slowly first as small requests that the school turned into demands, and grew into ridiculous requests. Now we are in a bitter battle between parents (us) that want to protect their child and a school that resistant and demanding items that are against Federal law.
Andrew and his dog are certified as a team. The school requires a handler or teachers’ aide from the school’s organization of choice. Our problem is whatever organization the school uses neither trained Alaya, Andrew, nor us on this dog. The trainers that trained us, Andrew, and Alaya are the certified officials and are the ones that provided the certificates.
Andrew’s doctor prescribed a seizure alert dog, and also directed the seizure alert dog, Alaya, must attend school with Andrew. Alaya has been successful in detecting Andrews seizures, even the subtle ones that are unseen and undetected. The school claims a nurse can provide the same care Alaya offers to Andrew. I know of no nurse with a nose so fine as to detect the subtle chemical changes that precede or accompany a seizure.
We asked the school to provide proof that a human that can sense and detect a seizure before it happens, and of course, they have yet to provide that. We, the parents, provided all we were asked for even though the Federal law states we do not have to, and yet the school will not provide clarification or direction.
We asked FCPS to provide us information on a school that had a service dog in it and they have yet to provide that. We asked the school to coordinate a meeting with those that were against allowing the dog and they have failed to provide that. FCPS are paid for by tax payer dollars. They are public servants hired to provide service to us, the tax payers.
FCPS finally offered a mediation meeting after having offered a full time nurse. A nurse cannot detect the chemical change in Andrew before a seizure, only a trained seizure alert dog can. The nurse can only respond to Andrew’s seizure if detected. Seizure alert dogs are not pets but medical equipment.
We asked for increased homebound hours until an agreement can be made with the service animal. No notification has arrived since the denial letter drafted by someone who refused to show up for any meeting with us.
Going to the media is not an easy choice. We are left with few weapons to fight a battle we know we already won. FCPS seems reluctant to admit and we refuse to remain quiet, or sidelined.
Our goals and demands are simply to allow the service animal to attend school with Andrew, to understand that we, the parents, will be there for the first several weeks to integrate the dog into the school, class, and with the other students, and to know that we intend to work every step of the way to educate, teach, and share the experience with the school.
We are not unreasonable parents. There are no legal reasons to deny a service dog. Service dogs are protected by Federal Law as are their charges. Andrew and Alaya have a legal right to attend school together, and I will not allow that right to be taken from him.
I love my son, he will be given the chance to have everything he needs and is entitled to. It wounds my heart to see him sad, upset and wanting to move to a school that will accept him and his dog. It takes everything I can do to maintain control, and discipline. I do so because I want my son to see that law is on his side and that when you fight the good fight, you are fighting the battle for everyone like you. For those who come after you. We must set the right example and be the voice for all those after us.
In our last meeting Mrs. Streeter said and I quote,
Angelo, “So if my son was blind, will he be allowed a Seeing Eye dog?”
Streeter, “No, we have teachers that can see!”
So before you assume I'm stubborn and unreasonable, remember I fight because people in FCPS have no real appreciation for the Federal law the are unjustly challenging.
We are not unreasonable. When presented with something reasonable, we are more than willing to work with them. If the FCPS would fund a handler and we reach an understanding of a handler’s duties, we would be willing to accept that. It is my understanding a full time handler would cost far less than a full time nurse.
Such an offer has not been made by FCPS, however, for a family in Woodbridge attending Woodbridge Middle School it seems to work fine. Parents, handler, principle, teachers, and students are all open and working as a team. It’s a learning experience and one Woodbridge Middle school has eagerly embraced. Perhaps FCPS can learn something from this school.
This is a battle for my son and his school, and the rights of persons with disabilities. Federal law is behind us. I will use every tool I have to make FCPS provide a safe educational environment for my son. I will not be bullied, I will not be quiet, and I will not accept no as an answer.
FCPS has had every chance to address this issue. All they have provided are a few statements here and there, which do not address the issue at hand. I even signed a release giving them full permission to speak, and instead a small statement was issued by the county’s chancellor which, again, never addressed the issue, or the lack of following the Federal law as it is clearly written. For the record, no one has ever won a case when denying a service dog that meets the ADA guidelines. For the record, no one from FCPS has been able to show us a school in FCPS that is allowing a service dog. FCPS has not offered us any concrete reason for denying Andrew’s service dog that we have not already countered.
Angelo John Stevens
Father, Husband, American.