What It Is Like To Be Told Your Child Is Terminal

As a parent you want everything for your child. You love them will all your heart and you have such good intentions for them. So when you notice they are struggling as an infant you become gravely concerned. You scrutinize every single percentile point and every mile stone. You make baby food and read to your baby every single day. But nothing works. Something is wrong. You know it. It is in your heart and even though you love your child with all your heart you know something is just not right.

And so you take your baby to the doctor and because you are a woman you are told you are a hysteric and the doctor starts to question your love of your child instead of medically evaluating your child. And this goes on and you go through many doctors until you finally find one doctor who will order the MRI you have been asking for for years.

It is no surprise to you that your child is diagnosed with Autism. You know that when he losses his words around 18 months. But you aren't really expecting anything on the MRI or atleast I wasn't. And it is rather traumatic to put your child through an MRI because he has to be sedated and that is scary as a parent. But I did it and I followed the doctors advice. A week or so later I received a telephone call. And while this is not exactly what was said it is close.

"Hello, Ms. Walters. I am calling to give you the results of your son's MRI. He has a degenerative brain wasting disease and we don't believe he will live past two."

I interrupted. "What he will be two in 6 days?".

The Doctor continued a bit irritated I interrupted. "Ms. Walters. I am sorry, your son is terminal.".

I interrupted again not caring if I made the doctor mad. "Wait don't you guys call me in the office and give me this news in person?" I thought they would atleast give me a sedative after having to hear this.

The doctor continued..."No, we don't bring people into the doctor's office to give them news their child is terminal as they frequently get into car accidents on the way home because they are in shock.". That was the most reasonable thing he had said in the conversation.

And all I could think was how inhumane. I didn't want any sympathy but this is my son. I need resources and referrals and all kinds of help and nothing but a simple telephone call. I later found out the American government doesn't believe in funding children with rare disorders or autism as they consider it to be a waste of money. And it has been eleven and a half years now under two different political parties and that posturing hasn't changed a bit. We have received absolutely no assistance from anyone. And my child has been no more terminal than anyone else's but unfunded because of the USA government is woefully uninformed and inhumane. They have Lost themselves in tbhier greed.

And I am wondering in Washington DC if all that money wasted on foreign aid and bombs and war is worth it when they stole it from the autistic medically complex ed children of this country? I know they sleep on silk sheets on mattresses stuffed with money but do they ever wake wondering if all the evil they have done to the American People over the last decade will catch up to them?

We are all dying each and everyone of us. Some of us quicker than others. This is especially true for politicians in DC. They will go faster then all of us as they can't make it a day with the level of disenfranchisement the American People have endured over the last 4 decades. So we are all dying and I would submit to all of you that we are measured not in how we live but how we treat each other while we are here.

It has been almost 12 years now and the USA has still decided not to give my son services because of his Autism and his rare disorder. We can't even get a local doctor. The USA govenrment has placed the burden of seeking specialized healthcare solely ojn me his MOther nurse, home school techer and just general maid. My son can't get speech therapy, in home nursing or occupational therapy. I myslef can't access healthcare services or dental services because i have no one to watch my child for the hour or so it would take to access these services.

And to make up for what the USA government doesn't do they pay people in state agencies to make up lies about the parents and children who suffer from these disorders to justify their failure to fund and serve. They run negative propoganda against the parent and the child so they feel justified in not providing for the crippled, sick and weak. Doesn't everyone in Washington DC realize they have set themselevs up for very bad deaths? How could we ever be humane to any of them after they have treated us so inhumanely for so long?

So what is it like to hear you child is terminal. It is horrible and then to have society and your local, state and federal government completely fail you is to watch all of civilization crumble. I don't have a vote for a candidate for anything that is not going to provide for children with autism and rare disorders. As far as I am concerned there is no political candidate viable that is not 150% for funding children with complex medical needs and autism especially ones who could have a shortened life especially due to failure of the government to fund them.

Ad i wouldn't reccomend you do either. It isn't the economy stupid it is complete and total disenfranchisement of the disabled and crippled children of this country for the last decade. I am fed up and I will not tolerate it any longer for you or for my family.

Today begins a new day in which Washington DC is going to have to start enfranchising all of the people especially those who have children who are autistic and medically fragile.. Damn the budget and Damn the economy this country is stinking filthy rich and there is no reason at all the people should be suffering like this let alone parents of children who have medical complexities and autism. It ends today.

Hilary Care was the beginning and the republicans liked that so much they took it up with "No Child Left Behind" penned by John Boehner and Lamar Alexander but pushed By George Bush. So it is both political parties who are exceptionally guilty. All of the aforementioned careers should have been over long ago. It makes you wonder how people of such low moral caliber and of such exceptionally poor ethics maintain their position of influence in this country? How did they obtain their power and how do they hold on to it?