There's Something About Alex

Living with Down Syndrome and autism

June 17, 2014
danijoy10

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A glimpse into the world of Autism

http://www.upworthy.com/experience-for-60-seconds-how-the-world-looks-sounds-and-feels-to-someone-who-has-autism?c=hpstream

I hope that link works. If it doesn’t let me explain. It’s 2 videos, one with 7-8 sounds going at once very loudly, and the other the equivalent only visual. I got a taste of this first hand at a governor’s workshop for parents of children with disabilities. They sat us on a stage while 6 people stood around us playing (very badly) musical instruments all at the same time.
If you’ve never experienced it, you should try it just once and it might give you a hint to what Autistic people deal with every day.
Alex has an auditory sensitivity issue. We would walk into a restaurant and because of all the background noise, he would fold up and go fetal on me. It took years for me to understand what he was going through.
But now with Autism on the rise the question remains….what is causing this? Fingers have been pointed in many directions, but I (in my totally unqualified scientific opinion) honestly believe that we need to look at our food sources. I don’t mean baby food. By the time the baby gets here it’s to late. I’m talking about chemicals that are being sprayed onto our crops. Or how about preservatives that are added to just about everything these days to make food last longer. When I grew up nothing was instant. If you wanted brownies, you made them from scratch. Now it’s rip a box open, mix with water and pour in the pan. Walla! Instant brownies chocked full of preservatives. Unknowing soon to be mothers are ingesting chemicals that will harm their unborn children.
At what point is our government going to take a hard look at what is really going into our food? How many children’s lives need to be impacted with a disability that will haunt them and their families forever?
It seems the only thing that gets legislators attention is lobby money, or for this tragedy to personally effect their own families.
There is definitely something to be said for “farm to table”. Just check to see what the farmer is spraying on his field.

June 12, 2014
danijoy10

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Trusting your school employees

I am assuming that most parents of special needs children are like me. I cringe every time I have to think about hiring a new aide for Alex, or starting a new year with a new para-pro at school. In the back of my mind I keep wondering, will this person be good to my child, will they pay attention to what he’s trying to tell them, will they care? But most of all hidden in the dark reaches of my mind is that greatest of fears that someone might hurt him. I of course worried about my girls when they were young too, but the difference here is that they could talk, he can’t. I knew that if anyone dared to touch them, their little mouths would let loose with a scream loud enough to shatter glass. Alex is in a different world, one where sign language is his communication.
Today CNN reported that in Pensacola, FL a bus driver slapped a special needs child. It of course was caught on the bus camera. My stomach cringed as I watched it thinking that could have been my child. The little boy wears hearing aides. If she had hit them how much damage would it have done to his already diminished hearing? She was put on paid leave while they investigated.
First question – At what point is it ever acceptable to strike a child when you are an employee of a school?
Second question – knowing that this child has multiple disabilities, what would ever give anyone the right to strike this child?

So once again thru truth in the news that old fear keeps creeping back in and haunting my dreams. Can I ever protect him enough……

May 14, 2014
danijoy10

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All you need is love………..

If you haven’t seen the news lately, Arkansas, and Eureka Springs is yet again coming into focus. What has this got to do with Down Syndrome or Autism you ask?? Hang with me for a minute and I’ll get to it.
Pulaski County Circuit Judge Chris Piazza ruled that Arkansas’ voter-approved ban on gay marriage was unconstitutional – heralding the arrival of gay marriage in the ultra conservative Bible Belt in the South.
Where I think it got a little sticky, and probably no one even realized, was that Eureka Springs was the only county out of 75 that keeps a courthouse open on saturday for marriage licenses. Thats because Eureka has long been known as the go to place for marriage in the south, and Carroll County saw a revenue stream.
So when Judge Piazza ruled late friday night, that opened the flood gates for gay couples to flock to Eureka Springs on saturday morning with the hope that for once in their lives they might have the same equal rights under the law.
Licenses were in fact issued and then stopped a few times before by Tuesday Pulaski and Washington counties were the only 2 left issuing licenses with all 73 others waiting for a ruling by the Supreme Court if it gets to that.

Now lets get back to Downs and Autism…..
As I drove around the courthouse and took a hard look at the faces of people in line, which was out the door and around the building, the main expression I witnessed was hope. Some of these people I knew, some I didn’t. But they all had the same emotion clearly displayed for all to see.
Not being gay, but being human I tried to empathize and thought about all the times in our history that any group had been victims of prejudice and how it impacted them and their families lives. Irish, Italians, Jews, the Disabled, even American Indians. And then I thought about Alex and the many times that we have been on the receiving end of snarky comments and stares knowing that our family was being judged as less than “normal”. It breaks your heart to watch knowing that your child will always be looked at as not good enough to some. Until you’ve been on the receiving end of that condescending stare from a total stranger, you probably have no idea how diminishing and worthless it can make you can feel. Which was probably what they wanted all along. Goal accomplished.
The major difference here is that Alex having a disability is guaranteed his rights under the federal law. Gay families are still fighting for their recognition. Fighting just to be able to publicly say “I love you” to that one special person in their lives and know that they too will have the same benefits under the law as everyone else.
So if you really get to the heart of the matter, does it really matter who somebody loves, as long as they love? Are we really that controlling as a society that we feel we have the right to tell someone that we probably don’t even know how to live their lives, and would we want anyone to do that to us?
Maybe it’s time to remember that Beatles song and practice what it preached….All you need is love…….

April 29, 2014
danijoy10

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Never say Never!

She said he wouldn’t know who I was when Alex was born. She said he’d never walk, talk, socialize. She said I should put him in an institution, forget that I had him, and start over……….

That was the idiot pediatrician that came highly recommended to us when I was pregnant with Alex 17 years ago. That horrifying experience and story will have to wait for another day.
Today, as in many others, Alex yet again proved them wrong. When I went to pick him up from school his teacher was jumping up and down with excitement.
One of the biggest things that I wanted him to be able to do was read the labels on food products in the grocery store so that he didn’t have to depend on them all having pictures. Up until today there was no evidence that he was understanding words other than to copy them.
But today he typed on his Ipad, “my name is Alex Joy” by himself while his teacher was setting up in another area. She heard the Proloquo software go off on his Ipad. (which by the way if you have a non-verbal child this app is fantastic!)

Now while this might not seem like that big of a deal to most people, it’s HUGE in our world. It means he gets it. He’s always been able to manipulate the Ipad and loves Disney on YouTube, but getting him to type words was a whole other issue. It was breaking that barrier from the Downs and Autism and getting to the mind inside. She got there. Thanks to this incredible teacher that teaches with her heart, Alex stepped into a new world.
And every time something like this happens I think back to that pediatrician that thought we should hide him away. Man was she wrong!

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Alex and one of his sisters who happens to be a teacher.

April 18, 2014
danijoy10

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Just when you think everything is peachy

I know better than to be delusional enough to believe that life with Alex will be fine and normal. About a week ago we noticed that his chest wasn’t exactly matching up with his hips and when I pulled his shirt off I about chocked. His spine was curving to the right. In my normal panic I dialed the pediatricians office and informed them that I was on my way. Since I usually over think everything I had even packed a bag just in case we were sent down to Little Rock to Children’s Hospital. After 30 minutes in with doc and 4 x-rays we were told that yes he had scoliosis, and he would be referred to Children’s Hospital.
Ok, I’m thinking if I just look up I won’t cry. It’s not as if this poor kid hasn’t had enough to deal with in his life considering he’s been thru 13 surgeries. But in true fashion Doc knew where my head was and putting his hand on my arm said, “At least it’s not his heart”
Reality check! Thanks Doc. That’s why we love this doctor. He keeps us focused and our head above water.

April 11, 2014
danijoy10

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Politics at its worse – fight the power

By the time Alex was 5 it was obvious that I had to study and watch the State Legislature extensively. You learn quickly that your child’s future and wellbeing was in the hands of whatever legislators happened to get elected the year before, and there was no guarantee that disability rights or funding was high on their list. It rapidly became apparent that children with disabilities health and daily lives were being offered up on the chopping block of budget cuts every 2 years as political motivation to make deals and pass bills.
I ran for the State Legislature in 2002 knowing that I had a snowball’s chance in hell of winning. My opponent was a Republican in a very red state and well liked. I did it to bring attention to the games that were being played in Little Rock and hopefully get this issue front and center.
Not surprisingly I lost, but by a small margin. That told me that people’s views and compassion were hopefully beginning to change.
In the mid 1990’s states were taking advantage of the good economy and rise in revenues to expand Medicaid and offer better eligibility to families with incomes at or above 200 percent of the federal poverty level.
By the end of 2001 though, the decline in the economy had put states into a more unstable position as far as their budgets were concerned.
Unlike the federal government who can print it’s own money, states are required to balance their budgets and cannot operate in a deficit.
Since Medicaid had increased extensively, the obvious place that legislators looked to cut was there. After all, these people were believed to be either dead beats, or were just sucking off the generosity of the wealthy and the taxes that they paid.
The two programs that were being bantered around for expensive cuts were TEFRA and WAIVER, both of which helped over 3,000 children with disabilities in Arkansas. Looking at the logistics, this shocked me because money spent under these programs received a match from the federal government of 3 to 1. While the feds matched the money, the states have the ability to administer it according to their finances and budget. So that left the states with a lot of lead way in exactly how it was spent and all they had to do was justify it. I found out that wasn’t that hard to do especially if no one is watching.
The word rapidly began to spread between parents in 2003 that cuts to the two programs was coming. Just how much or how extensive we didn’t know.
Parents began to get nervous and started calling their providers for information. Arkansas Support Network was Alex’s provider and I had sat on their board for a time. After a few phone calls it was obvious that things were going to get rough and we needed more information quickly.
Nothing was being said in Little Rock. The legislature was in session and even though we kept hearing that Arkansas was one of the few states that had a balanced budget with no shortfall, there was also the indignant scream that the Department of Human Services that operates Medicaid had a 100 million dollar shortfall and was growing at a rate that could not be sustained.
There had been a meeting set up by DHS and the Medicaid devision to appease the ever growing unrest by the general public. I suspect that they only anticipated a few people from the service industry that administers TEFRA and WAIVER to show up for the dog and pony show.
What they got shocked everyone.
Hundreds of parents tried to push their way into the small meeting room that was provided to hear the reasoning behind the cuts. What wasn’t being said was that there had been an unrealistic general revenue forecast and Arkansas was falling short. Because of short sightedness the legislature was getting caught with it’s pants down. But instead of admitting to the actual problem, the easy way was to blame the disabled, poor, and elderly as a drain on society.
I’ll never forget the day that we crammed into that little room to hear the DHS director justify what he was recommending and basically look down his nose at us. It almost felt like we were an inconvenience and a total waist of his time. He spent about 5 minutes in the room and then turned it over to the Medicaid director who was left with a room full of screaming frantic parents.
Standing in a corner I tried to stay out of the way and focus on the political game. I felt a tug on my arm and turned to see a very small stooped woman who probably was in her 80’s. She knew who I was and with tears in her eyes she begged me to fix this.
“I have no one to care for my boy when I’m gone.” Her son stood behind her quietly waiting. He had Downs.
“I can’t even die”, she said. “I can’t even die.”
Tears were running down her face. I stood there and held this woman, this version of my future self and made a promise that I prayed I could keep. I told her that I would make sure that these cuts didn’t stand. I would make sure her son was taken care of. And as I hugged her I couldn’t help but wonder if some day that would be me.

One man will forever live in my memory. He must have been a farmer or rancher. He was still in his overalls and looked like he had just come in from working the farm. He’d brought his son with him who was in a wheel chair. He quietly raised his hand to speak and explained that this program provided his son with the medicine that he needed to stay alive. He couldn’t afford it. With tears in his eyes he looked the director in the face and asked,
“What am I supposed to do, let him die?”
With a tear running down his cheek this large proud man never got an answer.

After about an hour of story after story from parents that were reduced to begging for their children, we were ushered out of the building and told to go home.
These were not people that fed off of the system. These were hard working families that had no ability to afford the astronomical medical bills that come with a child with a disability. They weren’t asking for frivolous things. They were there begging for their children’s medicine. Basic medicine just to keep the children that they loved alive.
On the drive home I thought back on my life and the hopes and dreams that I had when I was growing up. Not once did I ever envision that I would be in a situation to have to beg for government assistance for my son. I was raised in Texas to pull yourself up by the boot straps and take care of yourself. For the first time in my life I saw that sometimes you don’t have options.
Sometimes you have to swallow your pride.
And sometimes you beg, because your children are worth it, and they mean far more than your pride.

In the eyes of the parents that day you didn’t see people that were ashamed because their children had disabilities, or weren’t normal according to society’s definition. You just saw parents that loved their babies and were willing to do anything to take care of them….even grovel.

The first direct hits on cuts was proposed to be on ARKids First which is a program that offered medical coverage to children up to 200 percent of poverty level. It was created in 1997 after approval from the federal government.
By 2003 there were almost 235,000 children enrolled. Governor Huckabee was a large supporter of the program along with health providers.
The legislature adjourned that year without balancing the budget for 2004 and left the administration to deal with the shortfall. The biggest cut proposed was to lower ARkids from 200 percent to 150 percent of poverty level. That left 40,000 children immediately without insurance and necessary medical care.
Still on the table was the cuts to Waiver and TEFRA. So now the outcry was growing by the day and media coverage began to double and triple. It was front page news in the Democrat Gazette for weeks.
This all happened long before there were any chat boards, or web pages to help parents with contact thru social media. We began with a few phone calls.
We knew that the only way to be able to pressure the state to do the ethically right thing was to bring it to the media. People with disabilities generally don’t have a large amount of money to be able to hire lobbyist, nor do they make up a large voting block that politicians would be forced to contend with, so we the parents had to go at it from a different angle.
Since I had just tried a run for the legislature, I still had some good contacts in state offices. It was quickly leaked out that in the budget process the ledge voted to give themselves a raise and sink 2 million into renovation of the Capitol Hill Apartments that housed senior legislators when the state government was in session every two years. That amounted to 3 months in session and an apartment building that didn’t even house all of the governing body.
Armed with what we considered to be selfish and irresponsible acts by our representatives, we staged a “sit in” on the steps of the capitol building. We had contacted every TV station, radio station, and newspaper in the state and even included a few outside the state just for good measure. What they saw when they showed up that day was epic advocacy in Arkansas for that time.
Over 200 people showed up on the step with close to 80 individuals in wheelchairs. Some could voice their concerns, some obviously couldn’t.
With tape rolling the news caught several people that were hand chosen to speak and make our collective point. I was last on the list. By this time the news crews had pretty much gotten the story for the next day and were wrapping up.
I knew there wasn’t anything else that could have been said except that this legislature had been selfish enough to raise their own pay and spend 2 million on apartments that were only used 3 months every 2 years. Losing my cool, which wasn’t a surprise, I turned around and pointed to the Capital. The legislators had been hiding behind a car driveway ease-dropping on the proceedings to see what they were going to have to face. Obviously they didn’t want to come out and face the crowd.

“If you don’t believe us why don’t you go ask them. They’re hiding back there. Get them to come out here and explain to these people why they can’t have their medicine, and yet they got a raise!”

That was all it took. Media started running and so did politicians. It looked like the running of the bulls in Spain. Politicians scattered everywhere. In all there were only 2 elected officials that had the courage to step outside and face the crowd that day. We’ll never forget them for it. They were the only two that were fighting for us.
It hit the front page of the Democrat Gazette the next day and off and on for the next few weeks.
After all the bad press the governor proposed to increase the tax on cigarettes to make up for the shortfall to get us thru the next year. Grumbling, the legislature when along with it in a special session.
We were saved until they went into session again. I’ve learned that every two years you can expect the eminent threat of the same budget cut. It seems to be the easiest place to look with what would seem to be the least opposition from the poor, elderly, and disabled.
But years later as I was serving my term as Mayor of Eureka Springs I had someone say to me,
“Never underestimate the power of a few people with a very large voice”
I thought back to that day in Little Rock…and smiled.

April 9, 2014
danijoy10

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Your Autism is exhausting my reality

Let’s get real folks. If you are a parent of a child with autism or Downs, no matter how much you love them, it’s exhausting!
The Downs in Alex is obvious for people to see, but the Autism isn’t and that’s the hard part of his disability. Well, the doctor likes to call it Autistic tendencies. Children that just have Autism usually look normal and others wonder why they are acting out and expect you to just fix it and make them mind.
With Alex it surfaces in his room. Everything has to be in a specific place and heaven help us if it’s moved. His routine for putting his things up in the morning and at night is religious. There is no getting around it or rushing it. You just have to plan ahead and allot for enough time. These are the little things that change in your world when you have a child with a disability. And while it may seem small, this is an everyday occurrence that if breached results in an all out melt down complete with rocking and arm waving with the dog watching with an ever confused look.
Lately however his scope of moving things to where he thinks they should belong has expanded around the house to other objects like my purse and car keys. It has become a game on my part of “If I were Alex, where would I put my purse today”? Kind of like our family’s version of Where’s Waldo?

This has made the process of getting ready to go even longer. But when I ask him where he put my keys and he turns his cute little face up to mine and smiles that cheesy grin and I know he has no clue what I’m saying, how can I get mad. It’s just the world we live in now. It’s Alex’s world.

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