As many of you know (and maybe some of you don’t) Autism is a profoundly dynamic disorder. There are many sides to Autism. Some kids and families do just fine. Some families, mine included, struggle each and every day. Today is the worst day I can remember in recent history. I am so overwhelmed and stressed out that I just can’t function properly right now.
I’m at the point where I just want to beat my head into the wall just to make it all stop. Let me start by saying that I am FAR from perfect. In fact sometimes I’m as FAR from perfect as one can be. I loose my temper and raise my voice far to often. The reality is that I’m human. I’m a human that has been pushed SO FAR BEYOND what I can physically and emotionally handle that I can’t even think anymore. It’s always something. There is NEVER peace and quiet, NEVER.
Lizze is in CONSTANT pain which understandably puts her in a bad mood. She has had a migraine for WEEKS now. Not hours, not days, WEEKS. I try to get her to go to the hospital because they have more tools at their disposal that could help and she won’t. I understand why she doesn’t, I really do. There is a “stigma” attached to those who suffer from Fibromylgia. Many times people, doctors, nurses and even paramedics tend to see these people as “drug seekers”. They have no physical signs of injury but yet they hurt. Lizze is very aware of this stigma and so she avoids the hospital.
I hate that society has put people like my wife into this position. A position where they would rather suffer then go to the hospital (where you should be able to get help) and be judged or get the “look” from the hospital staff. I have taken in my share of “drug seekers” to the hospital. We would sometimes refer to them as “frequent fliers”. So I generally know how to differentiate between someone like my wife and some one looking for a fix. I’ve told her many times that I know shes not seeking pain killers, only relief but to many bad experiences lead to her just not wanting to go anymore. She used to be able to hide the pain and not let it affect her but not so much anymore. I couldn’t always tell but now it’s way more obvious. This is so frustrating and exhausting for me and I can only imagine what it’s like for her.
The boys, I love my boys. They are driving me CRAZY. Gavin is functioning on such a reduced level that it almost doesn’t seem possible for him to actually be 11 years old. In reality he isn’t. His outsides are 11 years of age but his insides are much, much younger. He can’t even remember if he had his meds anymore. Gavin used to NEVER forget things like that. He was always reminding us that he needs his meds. Now, I could give him his night time meds and then ask him 5 minutes later if he’d had them yet and he would not be able to remember. I am literally having to think for him much of the time anymore. I love him but he lacks ANY sort of “common sense”. It’s a lot of things like, “Gavin, that’s HOT”, “Gavin don’t do that”, “Gavin walking feet”, “Gavin use the handrail”, “Gavin NO running up the stairs” and “Gavin we don’t eat things that aren’t food”. It’s CONSTANT. It NEVER stops and he RARELY if EVER learns from his mistakes. He self-injures frequently and had taught BOTH his brothers to do the same. As much as we try to minimize the negative impact Gavin can have on his younger brothers it never seems to make much difference. I feel terrible about thinking these things but I know that it’s “normal” for me to feel that way. By saying this here, I not saying it to him and I suppose that’s a positive, right?
Elliott is showing more and more signs of ADHD. Although Dr. Pattie and I think it may just be anxiety presenting as hyperactivity. It makes sense but the cause really doesn’t matter when the impact is the same regardless. I love Elliott to itty bitty pieces but SO whinny and SO LOUD ALL the time. I can’t ask him ANYTHING without him unraveling. I do my very best to have patience but it’s just getting more and more challenging to find any patience for anyone anymore.
Emmett is SUCH a handful. While we are making progress in the land of communication we still struggle 95% of the time to figure out why he’s upset. He lashes out pretty regularly and assaults Lizze, Elliott and Gavin on a regular basis. Emmett has such a difficult time communicating most of the time that it just ends up with him screaming this bloodcurdling scream, over and over and over again. He has NO fear and so is a VERY real risk to himself and others. Last year he ran into and subsequently through Elliott’s second story windows. He luckily managed to not get hurt but that was beyond luck. He would NEVER be that lucky again. I struggle with EVERYTHING having to do with Emmett. I love him so much yet he pushes me beyond the brink of exhaustion and being overwhelmed. He’s only 2 1/2 years old. What’s life going to be like in a few years? That thought literally TERRIFIES me.
I’ve said this MANY times before and I’m sure I’ll say it again. I think God significantly over estimated my abilities when he decided that this would be my path through life. There is just to much responsibility and not enough or me left to handle it…….
There are many sides to Autism but our side is not so cute and cuddly.
-lost and tired