They say that autism parents have stress levels similar to combat soldiers. I do not doubt this. Some lives are easier than others, but in the long run, it really does take it's toll. There are doctors, specialists, and fights with the school. There are battles over schedules, food, and responsibility. There are a lot of battles. Most families seek out a local support system to help them survive the turmoil and stress that, just getting through some days requires. I envy those people. I don't envy many people. I am usually pretty content with our family and what we have been dealt. I am a strong and capable woman. I know this and find more strength in myself daily. It doesn't come without a price.
I may not have a strong support system, for what seems to everyone around me, to be things I should just figure out how to handle. However, I AM the support system for them. I am the baby of the children and eldest of the grandchildren. I am the only one with special needs kids, or kids between the ages of two and fifteen. I run myself ragged, day in and day out, just to get my own life to function. Still, most days, I am the only responsible adult around, other than my wife. When push comes to shove and tragedy rears it's very ugly head, we shoulder the brunt of the difficult stuff.
I won't go into detail, but this week, we had a very scary family emergency. I admit, my family is really good at running a telephone game, but action... It's not there. Someone very near to me came as close to deaths door as anyone can. When I received the call, nothing had been done about her son. Nobody had gone to get him. He's a teen and said some angry teen things when the family stepped up. His eyes saw the family taking his mom. Never mind that she was sick. He saw them taking her away. I get it.
Anyway, I flew into action. I immediately secured numbers and called around. I arranged for him to come here. I picked him up and sheltered and cared for him for three days. His mom is in the hospital. Someone needed to care for him. I honestly don't mind that. What really gets me, is this: With all the family here, how is it that I was the only one to go to the hospital everyday and take him back and forth an hour to his house and still keep my own schedules with my own kids?
The rest of the family gets time to process it all. They get to cry in the privacy of their homes at night and step away from it all. I brought it home. They call and tell me how or what to say to this boy because he is so angry. It is so important to them for him to understand everyone else's position. His emotions and processing don't seem to matter. They may have tried the blunt approach to get through his panic, but some of the things said to this child were terrible. Hell, some of the things they said to his mom were not so great, even if they were true.
The whole situation was badly handled. I spent three days talking and being there for a boy who nearly lost his mother and they did everything they could to make it as miserable as they could, for him. They dragged him into family discussions that NO child should be a part of. They included family members in those discussions that had no real place in them. They ostracized this child to the point that he blocked their numbers for a good two days. All the while, I am doing what I do around here with my own kids, plus taking care of his needs. That meant a lot of driving and a lot of putting out fires.
I see where the family wants him to see things correctly, but as long as he is burying the pain, he isn't going to see much of anything. I took him home yesterday. I am waiting to hear if he will be returning for a few days, during the holidays. He's a good kid. Today was really hard for me. (Here is where we come back around to that stress level.) I live with this heightened level of stress. I guess I just forget that I am the family firefighter too. While everyone decompressed and handled their grief and shock in their own way, I was holding it together and doing what I had to to make sure we didn't lose him.
In the quite of the morning and the uncertainty of the days to come, I had a little time to think. Yes, I have been protecting this boy and getting him through, but I almost lost her too. I can't fully come out of crisis mode because, honestly, this is far from over, but I need to let some of it out. I almost lost her. It was like a tidal wave of emotions. I pushed most of them back down, but it was enough.
I finally ate something. It seems that I forgot to do that. I was too worried about making sure he did. I have been plagued with nightmares, that until I really looked at them today, didn't make sense. I am afraid for me and my family. My wife is so capable, but to do this alone is a daunting thought. I have no doubt that my family would circle the wagons, but what happens when I am not there to put out the flames? What if it is me? Who is going to remain calm? Who is going to put my children ahead of any agenda and treat them with dignity and respect? I don't know. I really don't. I mean, I brought her underwear in the hospital. Somehow, I found time between school, stress, running the kids around, and family life, to go shopping for her and bring them down to her. Underwear. Simple thing. She was asking. Why did nobody do this for her?
I bet if I asked, they would tell me they didn't have time. Nobody ever has time. I needed time today. I needed somebody to look at what my family did this week and say, "You did so much. We appreciate it. You must be tired. Let me take the kids for an hour or two." Funny thing is, I haven't gotten a call all day. I did my job. Now, my family is shuffled back to the section everyone ignores. I am left to pull myself together and still function, when really, I just need one day or night to cry it out and deal with it all.
I would never change who I am at my core. I will always be there to help. I will never leave a child in the cold and I will always be there to help. Just, sometimes, I wish it was more of a two way street. I guess the point of this all is, don't overlook what others are doing for you. Don't underplay the acts or help. Appreciate what you have. It is hard to be an autism mom. It is infinitely harder to be an autism mom and the family firefighter. Hug your level headed family member. Be a shoulder to the one who didn't look inward and really put themselves out there as a stress sponge. Appreciate that. Not many people are like that.
I am not completely selfless, but I do value family and children. I hope that others do so as well.
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