Monday, January 5, 2015

Autism in Dire Straits

Getting around to writing my Happy New Year! post on January 5th seems to be pretty fitting for my life right now! Ha. I didn't have time, or an idea of what to write, and never a quiet moment to attempt it, anyway. I have pretty much given up on the notion of writing a traditional post for the new year.

But, here I am 5 days late giving it a go.

I feel like I have covered a lot of personal type goals, and changes I'd like to make with the last few entries. I talked about things I'm too old to keep dealing with, and how I'm not necessarily paying attention to every social media post that comes my way.

Right now I am feeling like my family is in crisis, and there isn't any personal goal that I can wish to attain that will fix that. I have put off writing this entry for awhile now. I hinted a bit about how Beans is struggling in my last entry, but I did not give any details. I never know how much I should talk about publicly. How much should I speak about his life, or my life, or my other kid's lives? Violating other people's right to privacy is always at the forefront of my mind when I blog. My own privacy, and dignity is also a concern. Sometimes, when I read other blogs I cringe at the private moments people share that as someone who was raised before the internet knows back in the day would never have been shared with a wide audience.

On the same token I am not going to sit here, and blog about how awesome autism is without sharing the moments where it is not. I am not all about autism equals suffering crap. I am also not all about glossing over real struggles.I have to speak about the truth, or else why even bother writing in the first place?

The truth is that sometimes with autism life can be kinda hard. I know that just from my own brain. However, Beans autism is not quite the same as mine. He has so many other mitigating circumstances that sometimes can make it hard for him to cope at times. I always hesitate to try to explain his other issues such as cognitive delays, because it is usually met with anger about how autism doesn't mean intellectually disabled. I agree it doesn't for most, but can for some. When Beans was diagnosed at 2 I was told that his cognitive delays were more of a disability than his autism by our developmental pediatrician. She also said that by 10 I need to be considering a residential facility for him. I was downright offended. Shocked, and offended. Still. that stuck with me for years. She didn't say that about Bubby when he was diagnosed. She didn't tell anyone else I know that about their kids.

Keeping him safe here lately has been a full time job. So has keeping everyone else in the house safe from him. I hear the the doctors, and their warnings,
but I feel like they're asking me to choose between keeping my son home, and the other kid's safety. Broken glass, and severe pica fill my day. By the time I clean up one mess I discover he was in another room destroying, or eating something else. Not that it is that easy for him to find things to break, or eat, but at times he will take apart his pull ups, and even the walls if he has to to eat them.

We haven't been able to leave the house much, because he either melts down when we do, or plain out refuses to leave. At the size he is I cannot make him do anything he doesn't want to do. I have sat in front of the door bawling as I hold his coat, and watch as an appointment time ticks by, because he refused to get ready to even leave.  Another missed appointment. Some days he sits in stinky pants for over an hour, because he refuses to let me change them. My whole day is spent trying to coax him to do the most mundane life activities. He fights me on every tiny transition no matter how much warning I give him, or time I give him to come around.

I know this behavior is due to him feeling agitated, and/or anxious. He is being defiant, but it's not for the sake of just being defiant. I know him well enough to know when he is this way he is not well, emotionally, or physically. His sensory system is in overdrive, which is why his pica is so bad, and why he won't put on shirts, and coats. He is obsessed with opening, and closing everything in the house, which is causing so much damage to appliances. He is off kilter, and frustrated, but doesn't know how to resolve it, so he keeps asking for things he doesn't want like food. All day long he takes me to the pantry, and fridge to request food that either isn't there, or that he doesn't want once I get it for him. It's like his body is on auto-pilot moving on it's own without purpose, or intent. I have seen other nonverbal autistics explain through communication programs that sometimes their bodies move when they don't want them to. I feel like his is like that, too. Or, that he doesn't always have full control over what it's doing, which includes being able to indicate what objects he wants. I don't think he can always move when he wants, and stop movement when he would like, either. 

I am not giving up. I am, however, ignoring everyone who has told me, or hinted at me recently that I ought to consider putting Beans in a residential facility sometime soon. Most times when it is mentioned it is out of nowhere, which leaves me astounded. The dentist asks what we're going to do when he is older, and the family doctor, and pretty much everyone who sees him in one of his uncooperative, meltdown states. We're trying new meds, and hoping like crazy it helps. We're doing everything we can think of (within reason) to help him feel calmer. I really feel like it is an issue of balancing out his emotional, and physical needs, and not one of defiance. Beans overall disposition is actually happy. He is a very sociable, happy, cuddly guy most of the time. It's these spurts of meltdown behaviors that worry me. It's not all gray skies, and gloom here.

I am well aware that this post might lose likes on my blog, and fb page. I think I have made my peace with that. I know a lot of people will think I shouldn't talk about this publicly. Others will think I am peddling the suffering model of autism. Others might think that I am being a diva. I personally would have thought a few of those things myself a few years ago when things were different in our household. I recall unliking pages due to posts like this, because I thought the parents were attention seeking, and their truth didn't fit with mine. Now, I see how wrong I was to assume such things.

I have disabled comments for this post. While I accept that I will lose likes, and followers I don't feel strong enough to receive a ton of suggestions that are miles away from our situation, or to read a bunch of judgmental comments about how I should do things differently. Maybe, I wouldn't get any, but just in case I feel better just leaving it alone.

Edited to add: I don't mean that suggestions aren't welcome as long as they're respectful, and not about behavior therapy, or diet. I obviously know about behavior strategies, and social storied, ect... I am open to ideas that have worked for your family, or someone you know. My email is listed in contact info.