What Is Wrong With Him?

Source

What Is Wrong With Him?

My son has both a rare disorder and Autism. I have been exceptionally candid and frank about this in all my work. He is going on twelve years old which is about a decade more than anyone thought he would ever have lived. We are not guinea pigs so we have not been studied and therefore no one really knows why.

And trust me there is no funding for families with children with rare disorders. This country has abandoned these children and families. If you ask for services they try to take the child from you and that is most certainly a death sentence since no one actually knows the diseases but he specialists and the parents. I believe my son is the only child in our area that has survived the disease. It is not curable but it is treatable every single day.

And everyday I get up and I have to give medicines as if I am nurse. Which no one trained me to do but I had to learn on my own. I have no respite. So everyday when I am working and writing here I have not had a break. I haven’t had a day off in almost 12 years. There is no babysitter so I can’t get dental care or healthcare. Quite literally I can’t even have my hair done because I have to watch my son and he can’t stand the smell of the chemicals in the beauty parlor. And this has lasted over a decade.

I home school. I am the only school that will teach my son. I am the only one qualified to care for him. Quite literally, I can’t allow him to suffer certain stress. It is an unbelievable existence and I am all alone doing it. What has been even worse is for the past two years I also provided end stage cancer care for my Mother. She died. No grief allowed as I have had no time for it.

It often occurs to me who else besides me could endure all of this? I know of no one. Even my own family couldn’t watch my child while my Mother was dying. If I get sick I have to get up and still medical manage my son regardless. But I don’t want your pity. I don’t feel sorry for myself. I often wonder how long any person could persist in this situation without any financial assistance or a break but I am running up on twelve years now so I guess I will just continue.

It is a cold cruel heartless world out there for us. Because even after twelve years I have people come up to me in front of my son and ask me, “What’s wrong with him?”. My son is fully cognitive and just can’t speak. It is very insulting to him.

You probably don’t follow me on hubpages but I can be a spite fire. Sadly the only thing I have for the pain is writing. And it takes every bit of strength I have left in my body not to answer, “You mean what is wrong with you?”!


And then the next question I have would be, “And what is wrong with society that it can ignore children with rare diseases and Autism?”.


“What is wrong with this country that it ignores it’s disabled children and denies them funding for war?”.


“Why hasn’t Hollywood done anything to help the plight of the disabled in this country from their billion dollar mansions?”.


“Why haven’t the Kennedy’s done anything to help the children with Autism?”.


These are all really good questions which no one wants to answer but instead claim that something is wrong with my child. So then I hold my tongue not to ask…

“What is wrong with you that you would even ask that question?”


And then I stop myself from staying, “Take a picture it will last longer!!” Because people stare at my child frequently when we are out in public as they would love to see the cripple shoved back into the closet like in the 1950(s). 2011 gays out of closet so more cripples can get shoved back in. Where’s George Clooney or Ellen on this one? How about Oprah?

We may have a black president but we have no civil rights. And the disabled of this country are treated so incredibly bad it is incomprehensible for the average person who doesn’t go through it each and everyday. It is a marathon for the child and a marathon for the parent.

I usually look at the person and just tell them my son suffers from a broken heart. And that all he wishes to be is loved in a society that steals funding from children with rare disorders, medical complexities and Autism for their own greed. And then I tell my son it is ignorance and let’s move on. We are thick skinned now. So thick you could probably stab me and I would bleed. Because everyday is just another day like this and nothing ever changes.

In Conclusion

If you are a parent of a disabled child and someone asks you what is wrong with your child. Answer a broken heart because they are ostracized from society, stared at, exploited and treated horrifically by their government. There is nothing wrong with your child, it is government and society which are broken.

I hope I didn’t mince words on this hub too much.

More by this Author


Comments 20 comments

Reyna Urduja profile image

Reyna Urduja 5 years ago from Philippines

I personally don't know how I would react to the powerful words you just said here. One thing is for sure they are full of love for your son and I admire you for your strength and endurance. With this article, you can make people see with their hearts. And soon, the staring will stop, the absurd question will stop. For now, to advocate on behalf of your son and other children all over the World is what you can do. Your words may sting, but you have hit the most important spot - the heart. :)


JT Walters profile image

JT Walters 5 years ago from Florida Author

Reyna,

Thank you for your kindness. It is hard for people to understand who do not do this everyday. And they really don't realize how cruel they are being. I realize this hub wil probably not be rated well or well received because very few people understand what it is like to have people stare at your child or ask "What is wrong with him?" and then keep it to themselves.

You are a kind and generous person to have read this. Thank you so much.

A child is a child and should be protected and treated kindly in the world no matter, race, religion, ethnicity, or ability. As adults we have that responsibility to teach our children compassion and caring.

Thank you so much and I am following you now as well and look forward to reading your work.

JT


claptona profile image

claptona 5 years ago from Earth

Hi JT,

Thanks for sharing your feelings - about a few things.

Being in your situation, what would be step number one to get your concerns dealt with?

I know you are not looking for hand outs.

But to help relieve some of the stress you go through daily, what would be the first step to relieve some of it?

You can leave a comment here or email me, your choice.

Cheers


rednickle profile image

rednickle 5 years ago from New Brunswick Canada

Wow what a piece here.I really admire the spirit and determination you have shown to your child. The steps to management of Autism is quite gradual and support is needed from all possible corners.Great piece once again


JT Walters profile image

JT Walters 5 years ago from Florida Author

Hi Claptona,

I identified ot the state, pursuant to law when my son was 2, what was needed. I am an expert so it was really quite easy. The State of Florida declined ot provide any services for the last decade. BEfore my Mother's death I contatced the State on again and provide them with not only the needs but the exact location where they had the funding and that we needed to be granted the funding in a consumer directed model since the were refusing to provide those services once again. They have refused for over two years now.

I have provide very clear short term and long term goals including education for my community in rare disorders whihc my son suffers from and it has all been denied. So the first thing I need is a country will to help my son, provide the funding to do so and the access to medical care he needs just in order to maintain his health. Second there needs to be a huge campaign to educate the average person about rare diseases and disorders as well as disabilities. We have crippled veterans coming home which people will ask, "What's rong with him?" as well.

And it can no longer be what one thing do your want becaus eif that is the case then I'll take the CEO job on Wall Street and pay for my son's care, live in NEw Yor where there is access ot medical treatment and schools that can help him and I will have enough money and influence to effect change in how our culture perceives another's person's worth.

Old people are disabled and I don't think they are worthless. But in this cut throat culture everyone is trying to make every other person do as worthless. I don't believe it. I believe our compassion is measured in how we treat people we think don't matter.

It has been over 12 years without a day off. And what is so sad is that I have clear identified the needs of both my son and myself to the state fo Florida and they have been nickle and diming so badly we have been completely abandoned.

I so appreciate you asking!!! No none asks from state agencies but blame Rick Scott and tell me about the state budget and how they can't help me because they want to keep their jobs. Or they are on the state payroll and they have a child with a disability and they can't services so my son doesn't deserve them.

The Speech therapist just left and she was really encouraged that we maybe able to get my son to speak. A child who has lived in silence for over a decade. He is making good progress. But I have to do about 2 1/2 hours of speech therapy exercises each day on top of home school. It is alot but someday my son maybe a fully functioning human being in society. A society which has thought he was worth nothing for over 12 years.

I wouldn't ask you to help me claptona. It is the state's responsibility to and it is a responsibility the state of Florida has ducked for over 12 years. It is the worst case of neglect and abuse of a disabled person and their family that I have ever heard of.

You asking helped. Thank you. YOu reading and being aware helps. Thank you. Having a few hub buddy friends with me through all of this helps and I am so appreciative. Thank you!!!!!!!!!!

JT


gadfly profile image

gadfly 5 years ago from Ojai, California

One thing I can say -- your son is very, very lucky to have a mother like you. You have assigned your life to your son and even very few of the well-bodied have claim to such deep love. JT your love is your badge of honor. You are a notch above the rest of us.


Pcunix profile image

Pcunix 5 years ago from SE MA

I certainly agree. This is a cruel, heartless country and this sort of story points that out perfectly.


JT Walters profile image

JT Walters 5 years ago from Florida Author

Thanks Rednickle,

That is part of the problem we haven't been able to access services in Florida for over 12 years. And there is no support especially with a child with Autism who has a rare disorder. Our local medical care is an hour North drive as fast as I can. Not even the local hopsital can or will help us.

They blame Obamacare but this has been going on for over a decade. It is all of governments fault.

Thanks for your kind words. It is so sad for me as a parent because all my son wants is to be accepted and included even with all his uniqueness. He is such a beautiful person with a great spirit and a wonderful heart.

When he sees babies and other children which are smaller than himself he always is so fraternal towards them. A Mother walks away from her baby in the grocery store and leaves the baby in the cart and my son goes stands next to the baby to make certain the baby feels safe and secure. The Mother of course is always startled and afraid because she thinks Autism is catching and doesn't understand the good nature of my son. It makes me cry when I see them flinch when my son stands over their children guarding them.

My son is a wonderful person. I just wish the world could open their eyes and see it.

Thanks for your kind words.

JT


claptona profile image

claptona 5 years ago from Earth

Hi JT,

Do you have a website set up for yourself, one that allows others in similar situations to band together to try and change things, get donations, get funding, etc?

Cheers


JT Walters profile image

JT Walters 5 years ago from Florida Author

Hi gadfly,

So kind of you to write such a wonderful thing. I honestly believe that all of us would rise to the occassion if we had to. I just know I will never take my son for granted as everyone believed he would never live past 2. He is almost 12. I try everyday to help him recover. And for all of you brave enough to read this and kind enough to comment. You are all right there with me wearing the badge of honor because this is hard stuff to read let alone discuss. It is not cookie recipes!!

Thank you.

JT


JT Walters profile image

JT Walters 5 years ago from Florida Author

Hi Pcunix,

It is a harsh reality of what my son and I live through each and everyday.

JT


JT Walters profile image

JT Walters 5 years ago from Florida Author

Hi calptona,

I wouldn't even know how to go about setting up a website. Wouldn't hat take a lot of time and would I need a 501(c)3 status to solicit for donations?

Thanks for asking.

JT


cherylone profile image

cherylone 5 years ago from Connecticut

JT, I struggled for 18 years with a young man who had issues no one could identify. I now help my daughter whose child suffers the same things. We struggle day in and day out and yet we get help for some of the issues we have now. I truly feel for you and your son. I have been there with the "what's wrong with them" and I know how much that hurts us, I can't imagine your pain. I applaud you for your strength and your commitment, both to your son and to your community. When you succeed in getting the government to listen, your community and your country will benefit. Don't give up the fight.


JT Walters profile image

JT Walters 5 years ago from Florida Author

Thanks Cherlyone,

Thank you. Your words are very touching. I think the government has selective hearing.

Thank you.

JT


claptona profile image

claptona 5 years ago from Earth

Hi JT -

Actually, pretty simple.

Go to eblogger at google, set up a simple website, see what kind of feedback you get for your cause.

Add paypal donate button, which is pretty simple and see what kind of response you get.

No need to set up anything until you find out what kind of feedback you get.

If you need some help, feel free to ask.

Cheers


JT Walters profile image

JT Walters 5 years ago from Florida Author

Hi Claptona,

Thank you so much I appreciate your compassion. I will set one up this week. I am on a deadline right now but I so appreciate your help.

Cheers My Friend!!

JT


debbie roberts profile image

debbie roberts 4 years ago from Greece

Hi JT,

Another good hub from the heart. Our sons needs really are nothing in comparison to your sons, but a couple of months ago I decided to stop all his recommended therapies - speech, behavioural & occupational - for various reasons.

Reading your hub has helped give me the focus to start making a plan to do his therapies myself. Slowly and surely we will build a routine at home. Thank you.


JT Walters profile image

JT Walters 4 years ago from Florida Author

Hello Debbie,

My son only receives speech and the state keeps denying him his augmentative communication device. I do a lot of therapy at home with him but it is really taxing to be do it all myself.

People are so judgemental. Nothing is really wrong with our children accpet they can't be loved, accepted and embraced as they are. It is the ignorance of others which harms our children who have no understanding what Autism is.

I am certain both of our son's are beautiful the way they are.

Lovely to hear form you my friend in the new year!!

JT


klurbauer profile image

klurbauer 4 years ago from Brink of Insanity ;)

I guess I found this hub a little later, judging from the age of the other comments, but I had to comment and let you know that I appreciated your hub. I have a daughter on the autistic spectrum as well, along with several other diagnoses. No one except another mother who has gone through something very similar can really understand, even when they are trying. I saw a lot in your article similar to my own daily struggles and frustrations and it made me feel better 1) because it's just nice to know you're not completely alone and 2) because I admire you for posting some very honest and raw thoughts and emotions here. So thanks for the awesome hub and keep up the great work!


JT Walters profile image

JT Walters 4 years ago from Florida Author

Hi Klurbauer,

I apologize for taking so long to get back to you. I have been working on my research and foundation. It helps me to know I am also not alone because no one really writes about what it is like day in and day out with aa disabled child. They candy coat it. And while I love my son with all my heart I am often shocked at the brutality he endures and he understands everything people say to him. He has 100% receptive language and so it is extremely cruel.

Autism rarely is the sole diagnosis unless it is a very mild case. So I feel for you and your daughter everyday. I will keep you in my thoughts and prayers as I and my son walk the walk with you and your daughter.

People are so cruel to the disabled but then I run into some incredible people who do understand and I am so humbled. It is an honor to meet you.

JT

    Sign in or sign up and post using a HubPages Network account.

    0 of 8192 characters used
    Post Comment

    No HTML is allowed in comments, but URLs will be hyperlinked. Comments are not for promoting your articles or other sites.


    Click to Rate This Article
    working