Landon's Story

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.