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A Shawshank Moment of Confusion

Hope is a good thingBy Cathy Jameson

My jaw dropped as I listened to a phone message that came in over a week ago.  It was from a woman who works at an agency that helps us secure services for Ronan. 

“Hi, Mrs. Jameson.  I’m So-and-So from the agency.  In reviewing Ronan’s renewal paperwork, I think I see an error.  I really need you to call me back as soon as you are able so I can go over it with you.  On the form, it looks like you indicated that Ronan was not living full-time in your home.  Instead, it looks like you indicated that he is living in prison.  We cannot continue services if he really is in prison…so, you really need to call me right away because we need to terminate services if his residency has changed.”

Stunned, I hung up the phone. 

Prison?  Are you kidding me?!  Here’s right here next to me!  What the heck did I check off on that form?? 

I’ve made mistakes before, but not one as bad as this one.  Looking at the clock, I realized it was too late to return the call and speak to Ms. So-and-So.  The office was already closed for the day.  I would be able to leave a message, though, and quickly did that. 

Hi, this is Cathy Jameson.  I just heard your message and can assure you that Ronan lives at home.  He has never been in nor has he ever lived in prison.  He lives full-time in our house and is right here next to me.  I’m not sure which box was checked off indicating otherwise, so please, please call me back as soon as you are able.  If I do not answer the home phone, please, please, please try my mobile phone…thank you.

After hanging up, I racked my brain trying to remember when it was that I filled out that paperwork.  It would’ve been months ago.  Think.  Think.  Think!  After a few minutes, I remembered.  I’d received a packet from their office back in the spring and recalled that it was pages and pages long.  I try to keep a copy of every form that we’re required to fill out, so went to my office to hunt down that copy.  Looking through the files, I thought, Wait a minute…I didn’t fill out that paperwork.  I called that information in! 

I had the option to either fill it out and mail it in or call the agency with the information.  Opting to call it in, I waited until all the kids were out of the house.  That way, I wouldn’t be interrupted while I was on the phone.  I remembered that I spoke to a young representative who went section by section with me – together, we updated Ronan’s stats, to include that he lived full-time at home with his family!  If someone on their end messed up my son’s benefits, I would be more livid than I already was.  I could do nothing more about it until I got a call back, so I tried to focus on what I needed to do next – pack for an end-of-the-summer quick trip to the beach. 

Friday morning while driving to Surfers' Healing (which is always one of the best weekends ever for our little family!) we had lots of time to talk in the car.  I told the kids about the phone call and how shocked I was to hear that they thought Ronan was a jailbird.  Can you imagine… Ronan behind bars!  We had a good laugh, but then things got a little bit serious. 

“Will he really lose his benefits, Mom?” one of the kids asked. 

“I’m not sure,” I answered.  “I have to talk to the lady who left the message.  I left her a message last night asking her to call me right away.  It could be as easy as unchecking the wrong box and checking the right one.  She’ll have to do that for me, and I’ll have to trust that she does it correctly.” 

“Well, she better call you back,” Ronan’s younger sister said sternly. 

“I pray that she does,” I replied.

After enjoying our fun day in the sun, the kids and I pig-piled back in the car for the drive home.  Riding that Surfers Healing high, we reflected on how amazing the experience was for all of us.  When they are there on the beach, my kids get so excited.  They know that it takes a lot of people a lot of time to make the magic happen.  The siblings love that Ronan, and tons of other kids like Ronan, are on the receiving end of so much love and attention. 

We talked about everything we saw and about everybody we got to talk to.  After sharing some stories about the volunteers Cathy J 8 26who blessed us with their presence I said, “I bet a lot of them don’t even have kids with autism.  I bet they see how wonderful the organization is and decide to give up their time for us.  They work all day in the hot, hot sun to make sure our families are surrounded by nothing but love.” 

The kids all agreed. 

Later on Willem said, “I wonder what it’s like for families who don’t have a child with autism.  I bet their houses are quieter, less hectic, and not so busy.”  I agreed with him, “Our house can be SO loud, SO hectic and our schedule SO very busy.”  And then I laughed, “But some the crazy is you guys, too, you know, and not just because of Ronan.” 

“Yeah, right, Mom,” Willem said with a twinkle in his eye.   

I little while later, Willem said, “I wonder if Ronan knows he can’t do as much stuff as we do…that he’s a little bit different.  I wonder what he knows what autism is since he hears that word so much around him.”  One of the other sibs offered, “He hears everything but he doesn’t show it.  It’s like he’s stuck and can’t get things to work in his body."

You’ve got that right, I thought. 

We’ve had so many tests done over the years:  hearing tests, speech evaluations, MRIs, bloodwork.  Even though many of the results come back “normal” or “within normal limits” he and the medical problems that plague him are far from what others would call normal. 

“You guys are so in tune with your brother, and I love it,” I started.  “You help with the simple things and the really complicated things.  Take his speech for example.  You want him so badly to talk again.  We know that his mouth works, his tongue works, and his voice box works.  He could speak at one point in his life, but now…nothing.  All the parts are there.  He just cannot talk like you are able to.  His body looks just like your bodies, but his doesn’t work as well as yours do.” 

Ronan’s little sister began, “Yeah, that part of him not being able to talk is hard.  Sometimes, it’s like he’s locked in prison or something…,” and then her voice trailed off.

Locked in a prison. 

“I sometimes think that, too,” I told her. 

Despite that, Ronan continues to thrive and make progress.  He’s started to play appropriately with toys again.  He’s been able to do some small household chores with the kids.  He’s typing a bit more, too.  All of that keeps us hopeful.  But the disability, and many of the struggles he faces daily because of it, still exists which is why maintaining his services is imperative.  We try to do as much as we can for Ronan on our own, but we know that sometimes we need help to get done what needs to be done.

Help comes in many forms and is delivered in a number of ways – through the generosity of family and friends, through therapy, through some financial assistance, and by being able to access the services that Ms. So-and-So seems ready to cut off.  I’ve called her back several times, but she has not found time to return my call.  I’d love to tell her that Ronan’s been able to break free from the silence and from being trapped in his body, but that miracle has yet to occur.  He still needs help.  We still need help, too.  I’ll keep calling and leaving messages because until full healing happens, my job is to keep fighting for my child.  That includes making sure that services are not terminated.  It also includes making sure that we, his family, keep Ronan healthy, safe, and happy right here in our sometimes loud, sometimes hectic, sometimes busy, but always loving home. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

Comments

Grace Green

Autism Prison makes an interesting point. I did wonder whether this "mistake" might have been deliberate. Please keep a skeptical mind - you can't be too careful.

Autism Prison

Please read Ghost Boy. It is amazing. The author was once trapped in his body (after getting 'locked in syndrome' at age 12 due to an illness (perhaps--it was never figured out what it was) and could not communicate. Everyone thought he was a 'vegetable'. But he heard everything that was said, and was aware of the love and caring and sadly, some horrible abuse. So many of our kids just need some bridge to their inner selves. This child, Martin Pistorius, was trapped in his body through his teen years. Now he is still mostly paralyzed, but can talk via a system such as that famous physicist uses.

I am sorry this weird snafu happened with Ronan's services. Are people aware of how insanely stressful and time consuming it can be to deal with all the paperwork of IEP's, regional centers, medical insurance, doctors, therapies, etc? I had to quit a job because the school district deliberately sent an unqualified aid to force me to pull my child out of typical preschool because they wanted him in the special needs school where they bribed screaming agonized children with M&M's instead of trying to figure out what was actually wrong -- (this hiring an incompetent so that I would fail -- was later proven and it got me some great services the next year). But when I asked my lawyer to go after them for my losing my job, she said that all the special needs moms have to quit, that's just the way it is. There you go. Your costs skyrocket but your income is halved.

Margaret J. Jaeger

The acts of abilties changing...is one..just one...of the attributes of my grandson's life I hadn't thought much about since he aged out of the teen years. I don't see him as often as we did when I could hop on the car myself and drive to their house...before these last past 6 years. He too, had abilities then lost them in this baffling jungle of Regressive Autism. He had persevering bad behaviors and lost most of them, thank God, as he aged. He has cognizance and can now even react to questions. And his therapies have changed over the years. They've also had some lost due to system limits or clerical errors or late filing from a parent who couldn't find the paper work after the grandson had found it first. So, life rolled on, with therapy changes due to unforeseen circumstances.

No one knows the foundational basics of a special needs child because what the public sees is what they tend to judge the child and maybe the caregivers on. They assume many things by comparing the seen autism and behaviors in comparison with the typical child. And, as this article says, most have no idea because they have no real experience with such a special needs child...even those who provide access to therapy services. And yet... those in power over us, the agencies and the medical organizations, still Ignore us.....and There's The Beast....

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