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Sometimes we need to stop and breathe

Updated on January 9, 2012

Those working with children need to remember the mission

It has become apparent to me that we are not alone in our frustration as parents of a special needs student. We always gave our son's teachers some breathing room since he has always been a mainstream student who receives therapy services and assistance. However, as I spend some time networking and speaking with other families, I find that no matter the program, mainstream or special education, there are always comments, complaints and those who believe they have the right to critique our parenting decisions.

I have a Master's Degree in Elementary Education, I also have a partial Master's Degree in Special Education and a Bachelor's Degree in Early Childhood Education. I know that I have a leg up on most parents who spend day in and day out trying to help their children. Yet, with all of my education, I feel as though I spend each and everyday on a battlefield. I recently read a study that parents of children with Autism suffer similar affects of the soldiers who witness and struggle with the trauma of war. That is an absolute disgrace. This country, the United States of America, claims to be the best country, the country of freedom and choices. As far as taking care of our special needs people, we are not moving as quickly as we should be.

I spend each and everyday listening to criticism about my son.It's nothing new. This has been going on for most of his life. It's just ignorance, nothing else. He is a 15 year old teenager. He is going through the roughest period of his life and it is compounded by the fact that he has a diagnosis of Asperger's Syndrome. These professionals claim to have some training in Asperger's Syndrome. However, the training they receive is subpar at best and outdated. Sadly since our country has decided that we would stage an all out attack on teachers, they are even less inclined to work with children like my son, since they must focus on keeping those standardized test scores up lest they be thought of as "lazy or inadequate educators". Yet, the English as a second language funding continues to rise. No, I am not against immigrants. My roots, as most Americans, are that of immigrants. However, my family took pride in working hard to learn the language spoken by the people of the country, those who ran the businesses, those who upheld the law, therefore they would never be confused or taken advantage of. They could also build their own lives and live the "American Dream" by fighting for it, and earning it though hard work and sweat. Their children's children would go on to college and thus follow the plan they laid out. The earliest immigrants did not have their hands out to take, but rather to give, to contribute to the building of our country.

I call my son's school to ask a question and must sit through various languages before I am able to speak with someone regarding testing that I require to get him into a program that will help him and ultimately assist THEM. We are currently working with a new medication because the school was having such a tough time with our son's behavior. He has calmed down very much, but yet the negative comments still arrive, almost daily. He no longer has screaming meltdowns in class, but now he is humming to himself and self stimming. Hello? Have we read the description of Asperger Syndrome? There are going to be self stimulation, humming to himself in a classroom set up for group work, is probably the least of the concerns. He is not screaming or hurling his almost 6foot body to the floor, is he? Well, then you are one up on many teachers who deal with Asperger students.

What has me so frustrated is that many, many groups have educators and our government bending over backwards, tripping over themselves to do everything humanly possible to assist them. But students with a diagnosis that makes them difficult socially and quirky, but often puts them in an IQ bracket well into the 120s and over, they are considered the problem. Many schools that are FAILING due to IEP students not making the grade, hmmm, should you put more energy into those who are failing because their families refuse to put one moment of work into their education or into the students who are intellectually gifted, but have social skills issues? Who is going to give you the blasted high test scores that those who micomanage have decided we need? Figure out a way to do both, not ignore the one that provides you with less funding and carries a stigma.

Please don't read me wrong, I am all for EVERY child getting a free and appropriate education. That is not what is happening here. On paper, these wonderful programs and services and offered and given. Reality is a totally different matter. Students who receive therapy and services in school many times are only having those therapies a few times a month instead of the mandated 2 or 4 times a week. The therapists are usually too busy going to meetings. What you don't know, won't hurt you is their attitude, they still get paid. Parents, do you know that behind your back, Occupational and Physical Therapy specialist go into your child's school to "re evaluate" because the children have been getting services for too long and the Department of Education wants to cut the cost. Guess what? A middle schooler who can color a butterfly does not need Occupational Therapy. That is the test one so called specialist did. Now the parents must go to court and fight this because occupational therapy is so much more than coloring within the lines.

My true issue here is WHY? WHY are those in charge doing this to us and our children? Do they truly believe that we WANT our children to be pulled out of class and go with a therapist? Do they really feel that we want to milk the system and run around all week to therapies after school instead of going on playdates or relaxing and enjoying our children? Do they really believe that we like having a child who does not fit the mold that they have laid out for the world. Aren't we in enough pain and distress worrying about what will happen in the future, why must we be tortured for wanting to help our children with services that are MANDATED BY LAW and not up to discussion due to budget cuts. It is quite similar to medical insurances letting patients die because they are refusing them the proper care in a timely fashion after a doctor who went to medical school and is highly qualified to make the decision of the type of care they deserve, mandates the need and is ignored.

Teachers, seriously, I am one of you. I know what it is like to work on lesson plans, meet with parents, try to get through the curriculum and satisfy supervisiors who have unrealistic expectations. But I also know what it is like to be the parent who is trying very hard each and every day to do what is right for her child and is forever being shot down by your comments and lack of desire to understand. If you have lost your mission, it is time to retire. You did not enter this profession to become a millionaire. You wanted to make a difference in the lives of children who would grow up to be contributing adults to this society. Many people are who they are today, thanks to a caring, hard working teacher. But lately, teachers are under such attack, many are teaching scared. Then there are those who are hardened by the system and its all about the union. I do not agree with the chancellor of our school system on many things, but I will admit that as in any profession, there are those of you who need to take a breath and look at yourselves and what you have evolved into. I find it very hard to sympathize with you when you walk into my Museum wearing Gucci shoes and carrying Fendi bags, sporting the latest expensive hair cut and color. You do not look underpaid. Some of you even spend the majority of your time there texting on your cell phone instead of interracting with the lesson and children. Not that I want teachers to be underpaid, the majority work extremely hard and deserve alot more than they get. But be careful, don't lose sight although there are some who might make the path difficult to follow. Parents need you to be our child's advocate along with us. This is about their lives, not just a test score.

I have often been told that I should be grateful that my son does not have a life threatening disease and he is healthy. Indeed I am. But I beg to differ, he does have a life threatening disease. He runs the risk of never being all that he could be. He runs the risk of ending up never being able to live on his own, or take care of himself. He is already labeled although is it entirely unnecessary to do so. We are scarred. We are bruised. We feel much of the pain of a parent who had lost a child. We go through stages of grief over and over and over. Each time we see a glimmer of hope that he might overcome something, we get excited. Every time a hope is dashed, we mourn. We mourn for the child we thought we would have. We mourn for the person he could be if only he was not shut down all of the time. Its exhausting. Its painful and I so wish it would end.

There is no reason that we must fight every single year over and over and over to receive and maintain therapies and services that is our child's right to receive. We pay taxes. We go to work. Those who do not contribute and pay taxes, do not have to fight. These services are handed to them and many times they do not even use them. It would require getting out of bed to get their children to the therapist.

The new NYC school's chancellor wants parents of special needs children to drive them to school and pick them up, thus eliminating the need for the small yellow buses and the matrons. She says she will pay them to do this. Okay, but then, I guess the parents do not work either. I left my full time job to do this and it has hit us very hard financially. Most parents do not get home from work in time for dismissal, but someone whose children were cared for by nannies their entire lives would not realize that. Also on her agenda is to cut the after school therapies for our kids. I am appalled. We are people in pain wanting to help our children and are repeatedly smacked in the face, while our children condemned to failure. Someone needs to step back and truly look at this. It just isn't right. No way can this be justified, all of this fighting. If I was illegal, or living on welfare, I would have everything. But we work and pay taxes, sorry, denied.


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