one rough ride, Pt 1

It;s hard to say where to begin with all this. In truth, I've now rewritten this blog entry six times. There are others that are locked in private mode on here, and I do believe I shall keep them so. I openly share a lot of my struggles with the world, but the words contained in those bare even more heartbreak than I chose to express openly.
I'll have to step back a moment to relay what has transpired. I've been doing that a lot in the last two weeks, and come to some rather interesting, if saddening, conclusions. Where to begin with an explanation?
We'll start with kiddo. Everything begins and ends with him in my world.
When he was in kindergarten, it was a special education class, as per his IEP. So far the school system had only seen him as developmentally delayed child with additional speech therapy requirements. I had asked them to look at some behavioral issues that were cropping up, but as he wasn't having problems in school, I guess they put it to the side. The beginning of this year in 1st grade SPE seemed like it was off to a good start. Granted, the full day format was an adjustment for him, and we had our ups and downs, but they were manageable.
But in November, things started to turn. What started as minor fits caused by very specific triggers (change in teachers, change in routine, not wanting to go to a specific task) started spiraling into full blown meltdowns. Previously, kiddo was known for his gentle demeanor, but suddenly we noticed a pattern of outward violence emerging. Mind you, he wasn't turning into some little evil psychopath. And a lot of it seemed rather unintentional. He'd start going into meltdown, and would be flailing around which ended up with him kicking and hitting people. The teacher's were firm in stating they didn't see that he honestly wanted to hurt anyone, he was just lashing out. The meltdowns would bring everything to a screeching halt, and were causing huge disruptions. They started taking longer and longer for him to come out of them. And when he did, he had no recollection of what just happened. It is as if something in him is just snapped. In fact, after the episodes ended, he would actually start reaching out for hugs and reassurance. He started displaying periods of manic behavior, which, if interrupted by a teacher or classmate, would also result in a meltdown. Then everything started increasing in frequency, going from 1 or 2 per week to per day.
The school was desperate to have help dealing with him, and I was failing to provide it. Every doctor I called to see him I was reaching a dead end. I have been on the waitlist for Children's for what seems like an eternity, and every attempt at even finding resources was coming up empty. Add on top of this my ex husband's complete and utter inability to help at all. I begged for at least his insurance information so I could attempt to find doctors in network, only to be met with resistence. He knows he's on the hook to pay 60% of out of pocket expenses, so to combat this he digs his heels in and refuses to cooperate. Being that I was pushing our divorce paper work through the system, any doctor I did find required letters of consent from both of us, which of course he wouldn't sign.
I filed papers to put our current visitation schedule in writing, and to give me full decision making authority. Then of course there were court delays on top of court delays. So, getting kiddo treatment he desperately needed gets pushed out even further, and tears my mind into different areas.
In the month of December things began to reach a breaking point with kiddo at school. They began having to call me to remove him entirely from the school. Once...then again...then again. The teachers and I prayed that this latest set of outbursts was just due to being unsettled about the upcoming winter break.
At home for those two weeks, I struggled with his meltdowns firsthand. He doesn't have them very often here, but I was facing the pattern they were witnessing. He would punch and kick me, beat his hands against himself, and lose himself in the throws of whatever was possessing him. I had to physically restrain him, something the school can't do. And when he came out of it, he would sit on my lap, exhausted, but clinging to me.
When he returned to school at the beginning of Jan, I think we were all holding our breath. I was one week away from what should have been a court finalization on my papers, so I could get him into a doctor without interference. But we hoped that the week leading up to break was just an isolated occurance.
We were wrong. The fits picked back up, and even still increased. The school tried everything in their power, and I could hear the frustration and weariness in their voices as they called to have me retrieve him. He has an amazing set of teachers, and they love him and genuinely want to help him. But when we don't know what's wrong, it's impossible to provide help. It just becomes a vicious cycle.
Finally, the day before my court date, the teachers, school psych, and principal collected in my living room. Anthony was put on a temporary IEP adjustment taking him down to half days. The disruptions were devastating the classroom, and hopefully with reducing his time there, they could minimize the damage with the other students. It was a saddening effort for all of us. But the ramifications of what was happening were coming into jarring focus.
If I didn't get him help soon, we would be forced to place him in a lower functioning class. Up until now, his cognitive disability had not hindered him academically, so he was able to keep pace with a general ed class, with added help with a midfunctioning level special ed support class. He reads amazingly well, is working on spelling and math with his peers. But with these outbursts, he would have to be removed from general ed, and placed entirely in support instruction. The possibility of him having a normal academic structure would be painfully out of reach. His future...
The stress of watching this took it's toll, for sure. I stayed up late at night crying. There is no devastation worse than being a parent, watching your child in desperate need of help, and having your hands completely tied to provide it. I felt useless, hopeless, worthless as a mother, despaired. I would give anything for my child, but I couldn't find the one thing he needed most.
I would call my dad and my mother, crying and desperate for support. My child's own father showed no inkling of concern, I felt so alone in this battle. Was I the only one that cared about this boy? My beautiful, sweet, loving, giggling boy...
Why wasn't I leaning on my significant other, you ask? *sigh* The answer, at least for this blog entry, is tha I never expected his support in my dealings with my son. He was not the parent, this battle was not his. He had always been very clear about his role with kiddo being minimal, and I respected that boundary as best I could. Scott wasn't exactly known for being Mr. Supportive anyways, a fault I tried to overlook. It simply wasn't his fortay, he made that clear, and I had to work around that. I would reach out to my other support systems, and just fill him in so he didn't wonder why I was tear streaked and sleepless. It was an arrangement we had for a while, really ever since the death of Bob. His inability to even hold my hand through these struggles did wear on me, of course, but I was too distracted by the immediacy of what was in front of me to actually deal with that matter.
But it was about to get a lot worse on all fronts. To save a reader's eyes, I shall continue this in a seperate post.