Something that I think many people forget is just how fragile our existence is. Lizze and I are both dealing with chronic health issues. We have 3 kids. Gavin is our autistic, bipolar, ocd,adhd,ptsd,pica,sensory integration disorder and opositionally defiant 10 year old. Elliott Richard is our “typical” 4 year old. He is the “big little brother”. Emmett John is our almost 2 year old. He has a pending diagnosis of autism (possibly non-verbal as he doesn’t talk). Lizze is living with fibromyalgia which is a challenge in and of itself. I destroyed my back while working as a fire/medic and have since been limited to what I can do. We both live in constant pain everyday.
Life on any given day is an absolute struggle. There are many times we feel like just giving up. Despite the challenges we do are very best to give our kids a loving, safe, stable, consistent and honest environment. This is a daunting task as the outside world doesn’t always make this easy. We’ve had to put up walls around our lives so we can control the environment as much as possible.
We don’t often let new people into our lives for many reasons. We have made the mistake of trusting the wrong people. So we do our best not to make that mistake. Our kids come first. So we rarely go anywhere cause we have no one to watch them most of the time. Most people don’t understand what being a part of our lives entails. My parents are the only people that give us a break. Most times it’s so we can go to a meeting or doctors appointment.
We have to maintain a constant state of equilibrium. If we don’t then Gavin WILL react and not in a good way. Gavin will shake the entire house with his stomping. There is nowhere to hide from it. My neighbors can hear him screaming from 3 or 4 houses down. Elliott Richard and Emmett John both get scared which affects them through out the day.
Because of how fragile this balance has become we have to remove all people and things that disrupt this balance or otherwise cause chaos. It’s the only possible way to survive. We have had to do this in the past. It’s incredibly painful but we will do it again if it’s necessary to maintain the balance and integrity of our family. Those of you out there that are in situations similar to ours understand what I’m talking about. For those of you that don’t it’s a “desperate times call for desperate measures” type thing.
We are not like a typical family. We don’t have the luxury of many options or choices on how to do things. Everything in our lives is black and white because that’s how Gavin sees the world. There is that old saying that a family is only as strong as its weakest link. Well in a way that’s true for us because if something upsets Gavin he doesn’t care how his meltdown affects the rest of us. He is just reacting to whatever stimuli upset him. The rest of us pay the price for whatever upset Gavin. We once again become like prisoners in our own home.
We are living in a state of extreme chronic stress. This is further complicated by the fact that Gavin has a symbiotic relationship with us. This means whatever effects us or stresses us out also effects him. So we have to always hide as much of this as possible. It’s utterly exhausting to constantly shield him from all of this. If we ever falter not only will he pay the price but the other kids will pay a higher one. The only way we have to make this even remotely possible is to remove all unnecessary and unwanted drama from our lives. As it stands we have enough of our own. We don’t need anyone else’s.
Gavin is trusting by default. He can’t tell when people are being untruthful with him. He is very easily exploitable. Another reason we don’t let many people in is because we have to make sure that we can trust them. This is vital because Gavin will trust anyone. We serve as a filter for him. On rare occasions, as stated earlier some people may slip through the cracks but not very often. If we extend trust to you it’s a one time only thing. Even after we let you in it will take time for us to get used to the fact that you are there.
I know this probably sounds dramatic to some but it’s the reality that we live in. Over the years we have had to take a “with us or against us” approach to life to help ensure our survival. This is what life is like for us.
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I totally understand where you are coming from.. Our lives are basically dictated by whatever Max does. Trusting people is not easy therefore, aside from my parents, we trust no one. As you mentioned, trust is a day by day thing, sometimes, hour by hour with regards to teachers, aides, etc…
Max is non-verbal, so he can’t even tell us if someone has hurt him, which automatically makes us put a shield up when it comes to the outside world. We literally had to purchase a home that was not attached to anyone else’s property, in order to have peace. By that I mean, nobody complaining about his banging, screaming, or any landlord fixing up anything that he has broken. I cannot tell you the amount of light switches we have replaced, Max has broken or damaged almost everything we have. It is who he is. We just deal with it and our glad that it’s our stuff he is messing up.
My husband has high blood pressure and I suffer from various aches and depression at times..But we just keep plugging along because we have to. In the end, we just have to because we have Max and I also have a “normal” 15 year old son, who at times, gives me even more grief then Max!!!! I always say I have one child that doesn’t talk and one that talks back too much.
So, our life, our personal growth, our careers, everything is dictated by Max’s needs. Alot of folks don’t understand that, they think, “oh he is not that bad.” Some people still refer to him as the “baby.”.. I am like uh, just because he is my youngest, doesn’t mean he is a baby… He is 9 years old and getting heavy, taller and stronger everyday…
I don’t know what the future holds.. and yes, I am scared.. Actually I am terrified of a life where Max does not have either myself or his father in it.
Thinking about that literally can give me an anxiety attack. What do you do, when you get old, when they become too strong 4 u to handle, what do you do if you can’t bear to leave them in a home, where you know, ppl will not care for him properly. It’s a question that I am sure every parent of a mentally challenged child has pondered.
Funny, when ppl say, “oh he is only autistic,” I want to scream and say, you know..I wish he were just blind, or deaf, or both. Then he could learn and communicate something to me. Sometimes I see children with Down’s syndrome who communicate better then Max… It’s is depressing.
When you start to wish for some other disability then the one they have… It’s crazy…
I hear what you are saying we have had instances where we’ve trusted the wrong people as well. We (my bf and I) come off like shut ins. My boyfriend runs the errands while I tend to the kids, and the errands are usually run while the twins are in school. We don’t trust too many people other than my bf’s parents, as we have had alot of problems with various people. The kids are trusting but we aren’t as we know the world can be a cruel thing. I hope you find an outlet with blogging that will allow you to talk without the having to worry about being hurt by others. I wish you two the best of luck as this road we travel with our children can be the hardest. And there will always be people out to sucker others. Have a great Friday!