Landon's Story

Saturday, August 27, 2016

How You're Missing the Mark on the "Epi-Pen Problem"

Before this starts, let me just say. I am, myself, affected by the Epi-pen problem, not as greatly as some, but I get "it". I too, have noticed the price increases (though luckily our insurance does cover them), and it is outrageous. So before the internet ‘haters’ are going to hate, let me be clear, I’m not arguing with you. If you think I am, you’re missing the point.

Ever since the first Epi-pen post came up on one of my social media feeds, it’s just “rubbed me wrong”, and by that I mean it’s made me want to reach through the internet and grab people by their shoulders and shake them violently until they gain some insight! Here is why.

This is NOT news! This isn’t some new conspiracy that’s just popped up overnight! This isn’t suddenly a new concept. The problem is not the cost of the Epi-pen, the problem is that you’re allowing the media to let you think that’s the problem, and that it’s suddenly a “new” problem.

The Epi-pen price has been increasing over years, not days, as has the price of just about every other rescue med, daily med, and medical necessity on the market. All of these items have the potential of being JUST as life or death as an Epi-pen, and all of them are way beyond the reach of thousands of people who need them.

I myself have advocated for these issues, and similar ones, since becoming a special needs parent. I also know hundreds of others through special needs networking that have been advocating harder and longer than I. I’ve experienced the judgement that almost always comes along with advocating. Friends and family of ours who have openly, and not so openly, judged our own advocacy through the last few years have suddenly posted several of these epi-pen articles and news updates.

On one side of things, this is great. Finally, something has gotten through to the world. All of this advocating we’ve been doing while fighting through the judgement is finally paying off. On the other side, it’s beyond upsetting. The world has finally crossed that line into understanding even just a fraction of what the special needs community goes through, and yet they are entirely missing the point.

The problem is not Epi-pens. The problem is these policies have been around for so long, and are upheld by such powerful and “popular” people, that nobody has been listening to the minority of us this entire time. This could have been fixed long ago if even just a few more people had stopped judging the special needs advocators, and started listening to and supporting them. Tens of thousands of people have been, and still are, drowning in these policies at a way greater cost than a couple of Epi-pens.

I’m not saying don’t fix the Epi-pen problem. I’m saying start looking at the big picture and fix thousands of problems at once, before it’s too late.

Tuesday, July 26, 2016

When It Hits Us

There are times it hits us. Little things happen, that shouldn't change anything and that no one would notice, but we definitely notice and it definitely changes everything in that moment.

Things like this don't seem like they should happen to us. We shouldn't be getting "hit" with these breakdowns, because with Landon's struggles being at least semi-intermittent we, unlike many others, get breaks. We aren't always in the hospital, in fact in summer especially, we can go quite a long time without a visit. We get breakthroughs of milestones reached, and family memories made outside of a medical setting. We are the "lucky" one's, who although dealing with many issues also don't deal with nearly as many as some families. We aren't constantly watching "seizure" after "seizure" like some. I have to put quotations around "seizure" now as our specialists fight about what his events actually are. Although, the doctor who worked at the most widely known and "best" hospital did diagnose him "again" with seizures. So maybe I will stop quoting it now.

That doctor also diagnosed him with "Global Developmental Delay", a term that seems to have a certain sound to it that absolutely makes my stomach drop. Somehow "Mild Developmental Delay" was much easier to grasp. The definition though, which I've looked at several times in the past couple weeks, really says nothing about the extent of the delay but more about the areas, or behaviors, it affects. A child could still have a mild - "Global Developmental Delay", or a global development delay with only a mild speech delay, moderate physical, severe social, mild cognitive, or any other combination. The diagnosis really only refers to there being at least some level of delay in all of the areas. Those areas cover a vast majority of skills that can be classified almost into any other area depending on the doctor or therapist doing the diagnosing, but a second opinion from the Pediatrician agreed with the diagnosis. So now we say, Global Developmental Delay.

I'm not sure if its that wording that hit me tonight, or maybe the re-diagnosis of Epilepsy after being hopeful that maybe it wasn't Epilepsy, and if it wasn't Epilepsy then, just maybe, "it" could be treated better or even cured. Still, those changes have been present for at least the last week. It was only tonight that my mood has shifted yet again, and something changed. Maybe it was the diagnosis of another "symptom", Auditory Processing Disorder. Yes I realize typically disorders are not "symptoms", but for Landon some disorders seem to be.

These include, but are not limited to his Sensory Processing Disorder, Auditory Processing Disorder, and ADHD. For some, these previously listed items are their or their child's diagnosis, and sometimes only diagnosis. For us, they are symptoms. Important symptoms, because they are the way Landon gets help, but really nothing more than words put together to describe another area Landon struggles in. In general, these could, and maybe should, be conglomerated into his global delay. They wouldn't have to be called anything, and he wouldn't have to have 10 acronyms following him around. In a perfect world people would not need these words to provide services to a child. They would evaluate and get to know a child, realize areas they struggle in, and then work at helping them. You don't have to call an extreme hypersensitivity to noise Sensory Processing disorder to know giving that child a pair of noise cancelling headphones would help. You don't have to, but "the system" does. In particular, the school system, although the medical and insurance systems to some extent run this way as well.

Still though, I've known it was likely Landon had Auditory Processing Disorder for quite awhile. That is why I asked for the referral to a place 4 hours away from us in the first place. So what is it, that changed my mood tonight and made it all hit me again? I honestly don't know. There could be a million other reasons of course. Such as I'm overwhelmed with school. I'm overwhelmed with life after cleaning and picking up the house and unpacking bags that have been packed for 2 months, cooking, and taking care of kids (with Daddy's help of course) the entire weekend with little break. Yet still as I look around the house, there is a stray rain boot lying next to me despite it not raining for days. There are dishes in the sink. The batman toy that has been put away 5 times this weekend but still in the way to enter the kitchen from my location. All non-refrigerated food items are still in their bags needing to be put away after grocery shopping, and I'm blogging instead of doing any of this or the homework I'm overwhelmed with.

All of this, because tonight, it all hit me again. All of the questions, worries, anxieties and sadness that I'm assuming comes with any disability, not just Epilepsy. What is the problem? How do we treat it best? How do we treat/avoid side effects? Will he ever grow out of it? Did it cause all these other things, or are these other things the cause? And of course, "WHY?" Why us, why him, why this, why now, just why?

This is special needs parenting. I've been saying that a lot lately. It hasn't been long I included myself in the special needs parenting "group". I'm not sure when that switched happened either. At one point our child had what was a very common medical condition, that could be chronic, but for the most part was well controlled. At some point we entered a world of multiple weekly therapy visits, IEP meetings, insurance battles and appeals, advocates, lawyers, social workers, special equipment purchasing, FMLA, and sometimes discrimination and misunderstandings.

Having 4-5 Landon related appointments in one day or 10-15 in a week is not unheard of for us anymore. Hospital admissions have become routine, and the nurses no longer give us the 30 minute orientation. We know every pediatrician at our nearest children's hospital well enough that they feel more like family friends than doctors, and they know us. Nights are spent researching the next best treatment method, drug interactions and side effects, or new and improved ways to help him. Days are spent at appointments or thinking about, calling for, or preparing for appointments. We have become fully immersed in this world, and honestly the ease at which we fit into it has been much easier than fitting into the "other" world. The things we've always struggled with, suddenly there are other people who get it. There are others who understand this roller coaster, and these dilemmas. Not that previously people didn't try to understand, but there is a certain exhaustion that comes with 3 doctor appointments and an IEP meeting all in one day that cannot be described to those who haven't been there.

So tonight, for all those who can understand, I'm stuck. Tonight his needs are hitting me, and I'm drowning from the constant battle. Tonight all I can think about is helping him and not having the answers to do so. Tomorrow will be better, but tonight is one of "those" nights.

Saturday, May 7, 2016

My Son Was Put on IEP to Enable Him not to Disable Him

After 2 years of strong advocating, countless hours spent worrying and frustrated, and even more hours spent educating ourselves regarding his education while simultaneously educating him so he could even maybe access that education, 3 days ago, at what seemed like our most simple meeting yet, the school agreed L is now ready for an IEP.

By "strong advocating" I mean being "that" mom, I'm nothing if not stubborn. "Hours" was really "months". "Worried and Frustrated" as in completely burned out and exhausted. And "simple" meeting meant about 10 minor internal panic attacks, countless reminders to breathe, and a headache that started 3 hours before I even arrived. I also lost my voice the next day, though I don't remember talking much during the meeting.

We've been through a lot to get here. A lot of doctors appointments trying to explain the daily struggles, Neuropsych testing which involved sitting in VERY uncomfortable waiting room chairs for 4 hours after a 2 hour drive one way, and then another 2 hour drive  back. To be followed by a 3 hour drive (one way) to go get results, and then waiting 30 days for the report to arrive in the mail because it seems our mailman could also benefit from some additional education. We did finally receive that Valentine card on Easter, close enough...

If you've ever been to an IEP meeting you know they spend the first 90% of it telling you things you probably already know about your child. He doesn't transition well, he takes the longest possible route to anywhere he doesn't really want to go, listening is optional, and if you make a rule he will hold you to it. If you say we read every other page with another student, you better also state that a page with 3 words qualifies that other student to an additional page, or well, let's just say it gets loud. Someone else is stubborn too. ;)

There were some small laughs to be had while they were telling me these school observations, as I envisioned him taking the longest route possible to his bedroom at bedtime in our 2 bedroom apartment, no easy task. And when I re-lived the time I accidentally put the water on his toothbrush when that was NOT a step on his daily picture chart. Teeth went unbrushed that day...ooops. The dentist says they look good though, and that he's cutting molars which is why the sudden re-surge in his oral sensory seeking. Did you know children could chew through $120 computer power cords, while plugged in, without getting shocked? I do now! How dare I take a shower and leave my 6 year old alone for 10 minutes.

So in the last 10 minutes of this meeting, finally the bottom line. I had already prepared for the worst. "He's borderline, he doesn't qualify, maybe a 504 plan, or we can always put plans in place without the IEP, etc etc." I'd heard it all before. The problem with all of those options being that the school wasn't consistently following through with any of the plans we had made. I was so reluctant. To the point they had already gone through the qualifications, stating the one's he had met. I read on top he only need to meet 2. I still couldn't believe it when they'd listed more than 3 of them. HE QUALIFIES!

I actually don't remember much of the rest of the meeting. We still have to write the whole thing. There are still compromises and disagreements to be had, but he qualifies. No more hours of "catch up" at home. No more trapping his teacher into a corner to get a decent daily report. Most of all, no more beyond frustrated child with completely burnt out parents. He qualifies, and finally the school will be held more accountable. He will receive the help he needs, and we are free to take a little time to actually be a family and have fun with our child.

I got home and the first thing I wanted to do of course was tell someone. You don't end a 2 year battle with a win, and not feel like screaming VICTORY! Dad is asleep...ugg night jobs! Grandma....didn't answer her phone. Uggg. Social media? Perfect! Instant posts in our 2 IEP/Special Needs groups and our Epilepsy Group. Done. I have to admit the congrats and nice comments are good to read. The best part though, several other parents of kids like L asking how did we do it? How did we FINALLY get the school to see? They are in the middle of their own battles too. Many many kids just like L, falling through the cracks with burnt out parents doing everything they can to keep their child caught up on their own because the school refuses to do so. Being able to help someone in these groups is empowering, and really shows me how far we've come from that 1st day in the hospital with our very sick boy and no idea what to do besides hold him.

Then comes my personal page. I can't do it. I think about the people that read my page regularly, they'd all be happy to hear. Then there's the other ones. The ones who don't completely get "it". The ones who like the school, can't see any other definition of "Special Needs" than the most severe of cases. The ones who surely would be talking to one another, "Did you see what they did now?" "What kind of parenting do they think they are doing?" "That child just needs 'real' parenting?"

Yep, we know it gets said. We've heard it be said. We can feel it when we enter rooms with these people. We can read into the questions they ask and how they ask them, and we can see the disapproval. Sometimes it doesn't matter. We don't really have the time to care about it. It doesn't hurt us. We just move on knowing its not worth the battle. We know what we're doing it right for our child, and that's all that matters. Other times, it stings. It burns deep. Some of these people are supposed to care about our child a lot. Some are family. Some are lifelong friends. That disapproval hurts, and its not because they aren't being accepting of us. It's because they aren't accepting our son. A very bright little boy, who'd help you with anything, as long as there was a reward of video games in the end ;), and who is quite honestly the goofiest person I know.

So I didn't post. Was it worth the "fake" questions we'd get the next time we're around those people. Is it worth that sting? At the time it wasn't worth it. The people who were following us, and who we knew were accepting, had been told and were already congratulating and supporting us. The others, well, sadly for them, they didn't get to participate in the good news.

It's been 72 hours, and now I'm ready because how ridiculous is it to go through a 2 year battle and not to be happy about coming out with a victory? If others can't understand that, then I'm glad my son has taught me to be more accepting than them. MY SON IS GOING TO BE ON AN IEP!

There I did it.

For those who are going to say it, you're right, he is not "disabled enough" to be on an IEP. That's because he's not "disabled" at all. He is unique. His IQ can test in the top 1% when his brain will let him do it. He can run, skip, jump, play sports, and lay around playing video games. He is verbal, when he feels like it. He needs reminders to complete even a simple task, he needs cuing to stay on track, he needs sensory breaks, and time for extra motor output. He feels everything very strongly, so he cries a lot. He also embraces happiness to the greatest extent possible. When he hurts he cries, and because he hurts easily, that means a 30 minute meltdown over a slightly scraped knee. He can't "just get over it". That also means extra cuddle time with mommy. :) We've had countless meltdowns in Walmart because he's over stimulated, and yes he still rides in the cart 90% of the time even though I know people think he's "too" big. He can be impulsive, and sometimes do things we really don't understand. Forget about asking him to find and bring you something if there are any other items within a 5ft radius. He's been able to run our phones, the TV, every video game that exists, and anything that runs off of electricity since before he could walk or talk. He took his time with both walking and talking, but picked it up overnight when he decided it was time. Most things are done on "L Time". He can recite just about every word of every movie/show he's ever watched, and if you ever need to know the jingle for a commercial, all you need to do is ask him.

We have therapy balls, balance discs, special chairs, weighted vests and blankets, bouncy bands...and I'm still convinced that somewhere in this two bedroom apartment we can fit both an indoor trampoline and a swing. We do homework in rocking chairs sometimes. We eat pizza every Friday because we once labelled it pizza and movie night, and it is not allowed to change now. He asks us to play video games at least 50 times a day, and many times he melts down when we tell him no. We pick our battles. We pick our battles A LOT!

We do none of these things because he is "disabled" though. They are all to enable him to be the best he can be. My son is on an IEP to enable him to use his top 1% IQ ALL of the time, not just on Tuesdays when it's 53 degrees, he's wearing the perfect shirt, and he's in his "perfect" zone. He's on an IEP so that he can go to school without having to worry about what sensory things are going to surprise him. He's on an IEP so our whole family can be the best that it can be, so that we can have fun on weekends and evenings without being burnt out over the constant school battles. So please, talk behind our backs about why he isn't "disabled enough" to be on an IEP, Even say it to my face that he isn't, because than I can tell you I agree with you. L is not disabled, he is just waiting for all of us to catch up and enable him.

Wednesday, March 2, 2016

A Year Later

It has been a long time since a post. Life has taken a hold of us, and just doesn't want to let go. Our roller coaster continues. It seems the ups and downs are getting bigger and more dramatic as the time goes on. First lets start with an update.

Since our last post our insurance battle has continued. We found an advocate and then a lawyer and continued our battle. An appeal of the insurance denial had to be made, and we'll get to all of that in a bit.We got some responses from some of the people we contacted regarding Landon's story. Some were helpful, some were just to say they wish they could help but didn't have the resources to do so, and others pointed us to more people contact. All of sudden it seemed we had too many people involved instead of not enough. Keeping all of those people updated takes hours out of every week.

Landon has been in the hospital a few more times. We followed some cardio concerns which turned out to be nothing, but was a stressful process at the time. We then fell into the metabolic world, really on accident, and have struggled through that process until recently. So far, everything was eventually ruled normal. Great news when you're talking about genetic and metabolic conditions which can be very life threatening and don't always have great prognosis'.

The last few days have gotten a bit more crazy again. The appeal, which never did get to a trial with all of our detours to different specialties, had to be withdrawn. This is basically due to the legal part of these medical things not at all meshing with the real world path these medical things follow. It is common that legal proceedings take an excessive amount of time, however, in the appeal process for insurance requests the only information that can be used is the information that was available at the time the original request was submitted. A year can imagine the things that have changed.

Although we still don't have an answers, we have a significant amount of information regarding what "it" isn't. Those things are important when it comes to his appeal, but we wouldn't have been allowed to use any of it. The other thing that is important is having the support of all of the doctors and specialists that have been seen. I have written plenty about the difficulties working with our current neurologist. At a minimum, he's "difficult". We never had his full support with the appeal, and it had become very problematic for us and the lawyer. So, yesterday the appeal was officially withdrawn. It was a difficult email to read, but we had to keep moving forward.

A lot of that brings me to today. After being at work for about 15 minutes I received a call stating Landon was having difficulties at school. I got there to find he most definitely was not himself, so because of difficulty getting ahold of his doctor by phone, we headed to the clinic. The good news is, Landon seems fine. I'm not sure what occurred today. We are watching him closely, but for now he's doing ok.

The GREAT news is that all of his doctors, for the very first time, coordinated and agreed upon our next step. That next step is a visit to Mayo Clinic. This is also out of state, something we know all about battling insurance for. If somewhere is going to find us answers though, it would be there. We are hoping this is finally going to be what he needs. It means a brand new insurance request though, coordinated between 4 doctors, and for a much larger and more expensive visit. I would be lying if I said I'm not skeptical.

So, a year later and we are in the same, but also very different, situation as we were when this started. We're still getting amazing news only after being run through the ringer of an urgent or emergency situation. All of our good news comes with a "but", and we have to be very careful about what we accept as reality and get worried or hopeful about because in an instant it can all change. All of this has caused such extreme emotional exhaustion that there are days we all literally cannot even think about doing anything but get everyone fed, through the day, and back to sleep. Any day not in the hospital is considered a good day though, even our emotionally exhausted ones.

We have to keep reminding ourselves that it will all hopefully, one day, be worth it. It's taken a year to get just about no where, so I can only hope by the time he's an adult we might know at least 10% more than we started with. It is my hope that someday, families in our situation can get the information that we have had to fight for years for in no time at all. These battles are why SO many special needs parents suffer with their own mental illnesses and personal struggles. The special needs world has a long way to go still, and we hope it will get there someday.

We fight for this fighter, because he's worth it.