It is Time

To Quote the IDEA Act

"Disability is a natural part of the human experience and in no way
diminishes the right of individuals to participate in or contribute to society.
Improving educational results for children with disabilities is an essential
element of our national policy of ensuring equality of opportunity, full
participation, independent living, and economic self-sufficiency for
individuals with disabilities."

I consider myself to have a fairly strong personality. I fight for what I believe in, and if I am not sure if the information I am presenting is accurate, I am known to spend hours, all night even, researching, to make sure that the information I share is precise. I have also taken the personal stance that when it comes to opinion, that it is mine, to hold and cherish. While some may agree, others may not. It is the beauty of opinion, we are each entitled to our own, and until we have enough valid information to change our opinion, we are able to hold it, like a treasure. Ours to keep. Sometimes that opinion can cause trouble, but more often than not, it unites us with those who are like minded. It allows us to form relationships that we may not have otherwise fostered. It can bring people who are from many walks of life together for a purpose.

I don't like it when my opinion, my way of thinking is challenged, and I am forced to adopt another viewpoint for no reason other than surrender. To serve the greater good, to ensure that what I believe in as a whole is able to stay in tact.

It is apparent, through interactions with other parents and caregivers, far and wide, that opinion and belief of the parent is not something that is held to the high standard it should be, when we fight for our children's needs. Whether it be in the school system, with healthcare, with legislation, or the many other areas that impact our daily living, our voice often goes unheard.

We are forced to conform, when conformity many times does not fit our children's needs. We need to fit the square post in the round hole, and try as we might, it just will not fit. What worked for that child over there just isn't the best approach for my child. What works for my child, unfortunately causes unnecessary set backs in the child next to him.

There is no disability that presents itself in the same way for each child. We talk about the Autism Spectrum, but children with Down's Syndrome have a spectrum of needs, children with Cerebral Palsy have a spectrum of needs, children with ADD/ ADHD have a spectrum of needs, a child with ID has different needs than another child with ID of the same age and IQ. No two children are alike, and yet, as parents, we are so often asked to put our child in the box, and not allow ourselves to think outside the box for additional options that may suit the needs of our child better.

We have allowed ourselves to be silenced, our opinion isn't valid, as there are experts sitting next to us, who know what our child needs, and are more educated on the subject than we are as the primary care giver. Sure, we are preached to that we are the best advocate for our child, but when we attempt just that, we are shut down, told that we are wrong, are given examples of children, like ours, who have succeeded with the standard approach.

I fell into the silenced category. I allowed myself to believe that the experts were more experienced, and certainly knew more than I ever could, had worked with more than just my one child, had years of clinical and practical experience, and who am I to question their opinion. My opinion should be the one in question.

You see, it isn't that I am wrong. Again, an opinion is just a theory based on the facts we are given and formulated with our personal morals and values. An opinion is ours, not to be belittled or shut down by anyone. By allowing my opinion to be thrust aside, I am allowing myself to be silenced. While not every opinion can be validated, certainly a parent does and should have a voice concerning the care and well being of their child. Certainly it should be held to a higher standard than the opinion of someone just meeting the child and spending an hour, as opposed to spending a lifetime, with the child.

When will we, as parents, be able to openly and without fear of retaliation, be able to voice our opinion and be heard? When will we feel that we are truly a part of the team, not the adversary, making the lives of those whose salaries we pay, through our tax dollars, harder, more difficult.

There is a level of distrust between parents and the school system, conversely creating distrust amongst the school system and parents. In addition, we have teachers fighting for our children one day, and the next are suddenly silent. We have been forced to pay for advocates to ensure our children's needs are met, and that services are provided, further extending our already tight budgets, to only have to continuously fight further, longer, harder, and still feel, in the end, that our opinion again doesn't count, and that for the greater good of our child's education, it is best to concede. Silenced again, forced to conform.

It is time to ensure that our voice is heard. To let it be known that our opinion does matter. It is time to hold those accountable, as we entrust our children's future in their hands. To quote one of my favorite movies...
"It is time", Rafiki, The Lion King.

As many of you know, I am President and Founder of Kinera Foundation. While these are my personal views, it certainly is not the opinion of our Foundation or Board as a whole. Kinera Foundation strives to bridge the gap in communication between professional agencies, such as the BOE, and will continue to work towards this goal.