I woke up this morning and put my armor on. I am weary and broken, but there is still a war to fight. They have strength in numbers. I have strength in tactics. They have strength in resources. I have strength in strategy. They have strength in deception. I have strength in truth. By all means the odds are stacked against me, but what they don’t know is that I will never stop fighting. For I seem to be one, small person before this army of giants, but that is because they fail to see the force that I stand with.
This war is not a conventional one. It is a philosophical war in a “civilized” country centered around the value of human beings. It starts with having to justify why parents would choose to give life to an infant with disabilities. It evolves into tax penalties and insurance challenges placed on families with special needs children. Some of the hardest battles endure for years in the U.S. special education system. And then after graduating high school, college or even a post graduate school, people with disabilities can still be paid less than minimum wage simply because they have been diagnosed with a disability. There are many elements to this war, but my focus is on special education.
Congress has passed federal laws that require children with special needs have the same access to education as their typical peers. It seems pretty straight forward. All children have the right to go to school. Those federal laws also recognize that children with special needs require additional services to help them derive an educational benefit from school. This is federal law.
The United States Supreme Court has upheld this right to education time and time and time again. But in reality, school systems in this country operate outside of federal jurisdiction with arrogant defiance.
I was recently given 1,547 emails from my county that gave a great deal of insight into how deep the corruption to prevent children from special needs from meaningfully accessing the public education system runs. Within those 1,547 emails members of the state board of education, state level experts, dispute resolution representatives of the state, the chair of the county school board, the assistant superintendent of special needs, the special education director, the director of legal policy and compliance, multiple case workers, therapists and school administrators are on record for diligently working to deny my child’s rights to education under federal law. The emails are heavily focused on closing ranks, keeping the story straight, determining services and rejecting services without proper evaluations or processes being followed with a clear disregard of the child these conversations intentionally circumvent.
There was an overemphasis on ensuring anyone and everyone who ever worked with my son in a professional capacity knew that we were fighting discriminatory policies in the county and the state and that we were a problem family. There were messages about the fact that the services denied were not based on any policy, but that it was decided based on back room conversations devoid of legal and ethical merits. There were many emails from me to various persons involved stating the federal law, the violations taking place and my repeated requests to meet with someone to discuss the matter and find a way ahead. Those emails that were unanswered to me were secretly forwarded to all of those persons listed above with immature comments from special education “professionals.”
I suddenly realized how early on the higher ups were aware of the issues and how complicit they were in denying the educational opportunity. That meant that as I was forced to painstakingly exhaust all options for resolution, the fact that resolution would not be reached was decided long before I even knew where to go with my concerns. Ranks were closed before I even knew the next step to take. Emails from school directors and case workers who I initially believed were working in my child’s best interests, blatantly demonstrated that this whole process of placing my child in special education services was never about my child.
1,547 emails. Do you know what wasn’t mentioned in any of those emails? My child and his needs. Not one person ranging from the individual therapists up to the special education director to the chair of the school board to leaders at the state level ever asked what service does the child need? Why does he need it? What would it take to provide that service? Why have we denied it? What is the impact to the child? What does the law say? Are we within the rights of the law or are we wrong here? What about the child?
1,547 emails. Not one was about the child in question. Not one. Not one email focused on the well-being of the child. Not one email focused on educational value or impact. Not one.
Instead the 1,547 emails were about breaking the law and how to build a wall of defense against us so that our child would not get the services he needs. 1,547 emails that disregarded medical information and therapist documents detailing my son’s need for the service he is entitled to. 1,547 emails of griping and complaining of having to deal with parents advocating for their child and not one with an ounce of leadership or moral fortitude to apply basic problem solving skills to ensure the child was given a free and appropriate public education. Not one teacher, therapist, administrator, director, or advisor ever focused on the child. 1,547 emails. Not one.
My story is not unique. I am one of thousands that wake up every morning and put on the armor to face the special education system. I make it through the morning rush of getting everyone ready for school and feel my heart full of love with the beauty and grace that my children possess. I drop them off at school with hugs and kisses and go to work for the day. In between school and work, therapies, doctor appointments and extra-curricular activities take place. I come home and we have the typical dinner and bath time routine before all kids climb into bed for the night.
And then I sit up until the early morning hours on the internet fighting the fight that never ends. Learning the laws. Learning how to fight within procedural requirements. We as parents are held to the rules of engagement of this war while the school systems freely roam as rogue operators. Hours spent reaching out for help from a silent federal government, from overwhelmed disability organizations, from attorneys we really can’t afford to hire. Desperately fighting to get our case in front of a judge when school system attorneys stall our cases in hopes that we will get worn down, quit and go away. Dealing with harassment and retaliation from school systems who don’t support our federal right to appeal illegal decisions. Wanting to tell a teacher or assistant that we see how hard they work and we are so grateful for what they do, but being afraid that communicating with them will cost them their job. Listening to a school board tell you they don’t have enough resources for basic educational needs, but not seeing absurd legal fees cut from school sponsored special education litigation funds. Gathering all medical documentation needed to fight for services in preparation for a meeting, knowing that the school personnel have predetermined that your child will not receive those services, while also knowing you have to do things the right way when the school system is guaranteed to do them the wrong way. We do it night after night after night. We follow the process. We document everything. We find the case law. We prepare for trial. And we know that through it all, we still stand little to no chance of winning. We question if we can continue the fight. Are we making a difference?
We fight for our children to go to school and receive the services they need to obtain an education as guaranteed under federal law. That’s it. We’re fighting this damn hard for our kids to have an equal right to education.
I am one of many parents. We are a force that is connected across the country who share lessons learned on how to defeat the giants. While our stories and our battles are unique, we are all fighting the same war. We are fighting for our kids to matter to the very people who are responsible for educating them. We are fighting for the teachers, therapists and aids who are threatened with losing their jobs if they stand up for what is right. We are fighting for our children to go to school in a meaningful manner knowing that the world has other hurdles for them when they graduate.
We are fighting for our children because they are worth fighting for.
We pick up the sword for those who are weary because we know their children deserve protection, too. We know when we are down that there will be more parents behind us better trained and more knowledgeable on how to fight this war. And we will continue to fight until there is a true opportunity for peace.
This post was submitted by blog reader and parent advocate Mary Beth A, from North Carolina.