I have spoken about the good people that have made a difference. So I thought it only fair that I also talk about some of the bad people in my life. I am not going to use a blog entry per person like I did before, I will simply mention them here.
I am not going to embarrass anyone so no names will be used, but I will give general descriptions so if they do happen to read this blog, they will know who they are.
One of our first lessons when we started finding out what assistance was available for us after having Dylan was learning how to deal with the bureaucracy. There are plenty of services out there for people who need them, but it can be very difficult finding out what is available to you especially when the people who are supposed to give you this information intentionally don't do so.
Now most of the people we dealt with were incredibly informative and were absolute lifesavers for us, but some of the key people we dealt with intentionally tried to sabotage our efforts with Dylan.
We got help for Dylan as early as possible and began receiving therapy from 6 weeks on through the New York State Early Intervention program with a local provider. As far as we knew Dylan was receiving all the services that he was entitled to. Unbeknown to us, there was one key service that Dylan did not receive until 2 years later that would have been vital to him. Feeding Therapy.
Today, Dylan can only eat pureed foods. He has not moved beyond baby food and the occasional cheerio or fruit loop. The reason is that he never learned how to chew properly. He basically allows food to sit in his mouth and then swallows it. Dylan should have been receiving feeding therapy since he was 1 year old.
Unfortunately, he did not receive it until after he was 2 years old. It was only when a doctor asked us about feeding therapy did we realize that such a therapy was possible for Dylan. When we discussed this with Dylan's social worker, she stated that she did not think he needed it and thus she never mentioned it to us. We right away demanded that Dylan be provided with the feeding therapy that he was legally entitled to. After much arguing, she finally relented and agreed to provide it. We had already lost over a year of therapy time with him due to this persons callousness. Dylan wound up only receiving a few months of feeding therapy before he aged out of early intervention. I still think about where Dylan's ability to eat would be today but for their negligence in providing this vitally needed therapy to him.
A few months later as Dylan was getting close to aging out of the Early Intervention program, we requested that Dylan be provided with 3 things that he was entitled to under the program. A special needs chair, a special needs high chair, and a special needs stroller. This same person along with a few other bureaucrats decided that we did not need these items. We could make due with just one. What was their reasoning for this? They gave none.
What was the real reason for their attempt to keep Dylan from receiving items that he was legally entitled to? They wanted to save money and they had the attitude that we should buy it on our own even though they are legally required to provide it to him. They saw that we had a house and a car. It seems that many of the people they work with are poor uneducated families. They acted as if they resented providing us the services because we were educated and employed.
It required my wife going over their heads and going to the top personnel and embarrassing them for their behavior for them to finally relent and give Dylan those 3 things.
The great majority of therapists who came to my house to work with Dylan did wonderful work with him. We are eternally grateful for their efforts. Dylan would not have achieved many of the things he can do today without their tireless work with him.
There were some who clearly did not give a damn about our child. They would come late. They would leave early. They would spend their entire time with him doing their paperwork. They would regularly cancel appointments and never make them up even though by regulation they were supposed to.
We have heard horror stories about therapists showing up at the beginning of the month for 15 minutes getting the parents to sign off on the paper work for the whole month and not coming back until the next month. I would like to think that they could get away with this with less educated parents. Melissa and I would not allow such a thing to happen to us. We tried our best to monitor the therapists work with Dylan, despite the fact that both Melissa and I work.
We entered the Early Intervention program on Staten Island with incredible thanks and gratitude and we left it in disgust. Though most of the people we worked with were wonderful individuals who truly cared about Dylan, the rotten people there completely ruined our early enthusiasm. The rotten people in this particular program truly epitomized the concept of an uncaring bureaucrat.
I wont name the program that Dylan received early intervention from here, but for any parent of a disabled child on Staten Island who is about to begin Early Intervention, please contact me and I will be more than happy to advise you on which program to avoid and which one to give a try.
I also need to discuss those uncaring bad people in the medical profession. Today Dylan has a great team of doctors taking care of him. But boy oh boy did we have to go through some horrible people before we got his team.
There were the doctors who did not want to deal with a baby with a rare chromosomal disorder.
There were the doctors who callously told us he would be dead before he would turn one and that we should simply forget about him and move on (Damn did I want to hit those people).
There were the doctors who lied about what they really knew.
There was the nurse who nearly killed Dylan when she was about to inject him with 10 times the medication that the doctor had prescribed on one of the occasions when we had to bring him to the hospital. (I am glad that Melissa was keeping an eye on her that day).
There were the doctor with the bedside manor of an idiot who couldn't be bothered to give us test results.
The doctor who placed my 3 week old son in the same room as a 15 year old dying boy. My wife who was already in shock with everything else had to sit there and watch this poor boy dying before her eyes.
The list goes on and on.
It sometimes gets to you. It can get you down. Its easy to get very jaded by people like this.
Thankfully, there are those good people who I have written about earlier who help me return to my cheery optimistic self.
I have discussed the good people and the bad people. There is one final group of people left for me to discuss...
I am not going to embarrass anyone so no names will be used, but I will give general descriptions so if they do happen to read this blog, they will know who they are.
One of our first lessons when we started finding out what assistance was available for us after having Dylan was learning how to deal with the bureaucracy. There are plenty of services out there for people who need them, but it can be very difficult finding out what is available to you especially when the people who are supposed to give you this information intentionally don't do so.
Now most of the people we dealt with were incredibly informative and were absolute lifesavers for us, but some of the key people we dealt with intentionally tried to sabotage our efforts with Dylan.
We got help for Dylan as early as possible and began receiving therapy from 6 weeks on through the New York State Early Intervention program with a local provider. As far as we knew Dylan was receiving all the services that he was entitled to. Unbeknown to us, there was one key service that Dylan did not receive until 2 years later that would have been vital to him. Feeding Therapy.
Today, Dylan can only eat pureed foods. He has not moved beyond baby food and the occasional cheerio or fruit loop. The reason is that he never learned how to chew properly. He basically allows food to sit in his mouth and then swallows it. Dylan should have been receiving feeding therapy since he was 1 year old.
Unfortunately, he did not receive it until after he was 2 years old. It was only when a doctor asked us about feeding therapy did we realize that such a therapy was possible for Dylan. When we discussed this with Dylan's social worker, she stated that she did not think he needed it and thus she never mentioned it to us. We right away demanded that Dylan be provided with the feeding therapy that he was legally entitled to. After much arguing, she finally relented and agreed to provide it. We had already lost over a year of therapy time with him due to this persons callousness. Dylan wound up only receiving a few months of feeding therapy before he aged out of early intervention. I still think about where Dylan's ability to eat would be today but for their negligence in providing this vitally needed therapy to him.
A few months later as Dylan was getting close to aging out of the Early Intervention program, we requested that Dylan be provided with 3 things that he was entitled to under the program. A special needs chair, a special needs high chair, and a special needs stroller. This same person along with a few other bureaucrats decided that we did not need these items. We could make due with just one. What was their reasoning for this? They gave none.
What was the real reason for their attempt to keep Dylan from receiving items that he was legally entitled to? They wanted to save money and they had the attitude that we should buy it on our own even though they are legally required to provide it to him. They saw that we had a house and a car. It seems that many of the people they work with are poor uneducated families. They acted as if they resented providing us the services because we were educated and employed.
It required my wife going over their heads and going to the top personnel and embarrassing them for their behavior for them to finally relent and give Dylan those 3 things.
The great majority of therapists who came to my house to work with Dylan did wonderful work with him. We are eternally grateful for their efforts. Dylan would not have achieved many of the things he can do today without their tireless work with him.
There were some who clearly did not give a damn about our child. They would come late. They would leave early. They would spend their entire time with him doing their paperwork. They would regularly cancel appointments and never make them up even though by regulation they were supposed to.
We have heard horror stories about therapists showing up at the beginning of the month for 15 minutes getting the parents to sign off on the paper work for the whole month and not coming back until the next month. I would like to think that they could get away with this with less educated parents. Melissa and I would not allow such a thing to happen to us. We tried our best to monitor the therapists work with Dylan, despite the fact that both Melissa and I work.
We entered the Early Intervention program on Staten Island with incredible thanks and gratitude and we left it in disgust. Though most of the people we worked with were wonderful individuals who truly cared about Dylan, the rotten people there completely ruined our early enthusiasm. The rotten people in this particular program truly epitomized the concept of an uncaring bureaucrat.
I wont name the program that Dylan received early intervention from here, but for any parent of a disabled child on Staten Island who is about to begin Early Intervention, please contact me and I will be more than happy to advise you on which program to avoid and which one to give a try.
I also need to discuss those uncaring bad people in the medical profession. Today Dylan has a great team of doctors taking care of him. But boy oh boy did we have to go through some horrible people before we got his team.
There were the doctors who did not want to deal with a baby with a rare chromosomal disorder.
There were the doctors who callously told us he would be dead before he would turn one and that we should simply forget about him and move on (Damn did I want to hit those people).
There were the doctors who lied about what they really knew.
There was the nurse who nearly killed Dylan when she was about to inject him with 10 times the medication that the doctor had prescribed on one of the occasions when we had to bring him to the hospital. (I am glad that Melissa was keeping an eye on her that day).
There were the doctor with the bedside manor of an idiot who couldn't be bothered to give us test results.
The doctor who placed my 3 week old son in the same room as a 15 year old dying boy. My wife who was already in shock with everything else had to sit there and watch this poor boy dying before her eyes.
The list goes on and on.
It sometimes gets to you. It can get you down. Its easy to get very jaded by people like this.
Thankfully, there are those good people who I have written about earlier who help me return to my cheery optimistic self.
I have discussed the good people and the bad people. There is one final group of people left for me to discuss...
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1 comment:
Oh yes the bad people. We too had our share with them. I have so many DARK and frustrated memories of Makily's first year....many of those dark memories are because we were fighting with several of those "bad" people.
To this day I can still feel the anger rising up in me when I recall certain things that were done and said in regards to Makily.
I better stop now before I just go on and on.
Love your blog.
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