By J.A.
Given all of my experiences with the various providers, the DOE, and those “unknown factors,” my life with my son has changed for the better. He looks like another regular little kid. He’s handsome, tall, agile but goofy at times and quite a prankster. He has a beautiful smile that draws people to him. He is truly a Gift from God. I am deeply thankful for this wonderful child. We have an amazing bond with each other. When he greets me, he has such excitement and happiness that it is contagious. He has such a beautiful smile that makes everyone around him smile. That’s when I know he is well and happy.
From these experiences in the DOE with various people that I have encountered in the last 3+ years, I have learned that some people are very self-serving. They only think of themselves. These people should not be in the “children” business because some children may never have that luxury of making decisions on their own. There are other individuals who see money as a means to an end. There are certain DOE contracted agencies that have no qualms about making money at the expense of special needs children. To compound matters, given that the DOE is one autonomous state agency that regulates and monitors itself; parents like me have very little recourse. In the end we usually have to go to due process to fight for what we believe is right for our child. As parents who go do due process, many times we become financially challenged during this difficult time where we must pay for independent assessments that may or may not be covered by our insurance. Other times, if we need witnesses to testify on our child’s behalf, parents must pay for their time. Also, many times, parents must pull their children out of the DOE system and place the child into private placement until due process takes place. During that time, parents pay for the private placement and any special services that the child needs out of their own pockets. A hearing on average is scheduled up to 4-6 months or more down the road creating a huge financial hole for many parents. If the family should win their case against the DOE, reimbursement could take another 2-3 months. Why are parents mistreated this way?
The greatest irony of this all is that as families struggle financially to provide a meaningful education for their children that the DOE cannot provide, the DOE uses taxpayer monies to pay for their due process costs against the very same families who are struggling. Where is the justice in this system where the parents must be penalized over and over and over again? The DOE takes taxpayer money but is unable to provide services under IDEA, then the DOE uses taxpayer money to fight the taxpayer in due process, and then when the DOE loses its case, they take their time in reimbursing the taxpayer for services acquired outside the DOE by paying with taxpayer money? To make this even more unbelievable, Hawaii is one of the few states that has shifted the burden of proof on the parents as a method of discouraging parents from going to due process. Apparently, too many parents are winning in due process.
The longer these children remain in the DOE, the more state and federal funding the DOE receives. I suppose the DOE has no true incentive to really see our children succeed only but to keep them confined in the special ed class year after year. I only hope that parents will one day be able to gather together and act as a united front and force the DOE to change for the better. Until parents unite, we will never cause meaningful change in this poorly managed educational system. I only hope that one day I will be able to participate in that change. It would be truly triumphant.
As for me, I have been blessed with so many wonderful providers who really do care about my child, who really want to help because it is in their nature. I have met many parents who are in the same situation as I am and we have assisted each other freely. We support each other and we teach each other based on our experiences. Although I don’t know where I am going with all that I have to offer other parents, I know that I try to do what’s right. Usually, I try to stand by my principles but sometimes, the fight is so huge it’s discouraging. Even now as I prepare to go to due process in December, I am willing to take it all the way through because it is the principle of the issues and the lack of accountability that this massive agency has. Why shouldn’t they be responsible for their actions? Why are they above the law? Why do they treat parents so badly when it is the taxpayer dollars that pay for everything? What gives the DOE the right to limit services to our children when we are paying for it? Why doesn’t the legislature give a damn about our children? Politics isn’t going to matter when these children grow up and don’t know how to vote.
Nevertheless, in the past 3 and a half years, I have learned much about standing up for my son. Although I really hate going to IEP meetings, I don’t become so anxious anymore. It doesn’t take me a week to recover mentally from them anymore either. I used to be extremely afraid about speaking up but now, I don’t think twice about what I say. When I go back and listen to the tapes, I am actually impressed with myself. I guess it takes practice. The other thing it takes is commitment and knowledge. I think all parents need to know what their rights are. They can’t rely on the DOE to give their child what they need. Most DOE schools don’t want to give your child any services if they can get away with it. They are truly the Department of Evil.
I have continued my child’s biomedical treatments because I know that I don’t want to spend all of my time fighting the DOE. It’s a battle that just can’t be won if this society doesn’t express any kind of outrage. I guess if it doesn’t affect their child, then its not a concern for them. I know that the biomedical treatments will work. I just have to make sure that I succeed. Fear has kept me from doing these treatments when Nick was 2 or so years old. Only because, when he can’t express how he feels, how will I know that he is nauseous, tired, has a head ache or feels sick from the treatments? How can I be so well-meaning and yet so cruel? It’s a fine line that we parents all need to draw. It’s just that some lines are more easily drawn than others. Now that he is stronger, I must do this. If he is to be out on his own at a private school, he will need to be able to function like a typical child. These days people are not so forgiving and much less tolerant of other people’s differences.
Already at 5 years old, Nick has experienced much discrimination because of his disability.
Who wants to be autistic? When I tried to get Nick into kindergarten, once the interviewing school found out that he had a disability, he was immediately dismissed as a “problem”. I understand the need to place the greater majority of children first, but what about the special needs children? Are they to be tossed aside like garbage? Don’t they deserve a chance to succeed in life just like everyone else?
TAPOSITIVELY 