Anniversary Triggers and Guilt

Last year at this time my oldest son first became afraid of being alone.

My youngest boy’s medication stopped working, suddenly, prompting a scramble for a better fit.

We are coming up on the anniversary of leaving. I am trying to prep for it, it caught me off guard last year.

This week I had seven commitments. One of which was a sport, so six appointments and one sport. I have three of them tomorrow afternoon. Earlier in the week I was a wreck.
It felt like I had not taken my medication. I became short tempered. I caught it, I told the children something was not right, I needed to be alone for a bit after dinner, I did not feel well. I don’t know why I was triggered. Anniversary? Finding out my cholesterol was too high? The number of appointments? I hadn’t felt antsy and impatient and touchy like that for a long time.

I forgot to take my GABA supplement for a few days a week or so ago, and I had some of the same feeling. I shouldn’t be taking it any longer. I have been on it for months. I love it, though. If I forget that or my vitamins I can feel the PTSD creeping up the base of my neck and shortening my temper. It feels like a pressure rising in the top of my head. Like a fake pressure. I cannot explain it. A tension, I suppose would be the closest I can come. I ought to try with glutamate instead, it is supposed to be safer. Some are of the opinion that GABA does not reach the brain, but some insist that the weight of the testimonials prove that it does. It is not the sort of thing you should take long term. I don’t know which is true, I swear often the internet just compounds the issue. I just know I feel more like the pre-trauma me, if I take it.

I Googled PTSD support groups in my area. Of course, they are only for veterans. The Army would not take me. I tried to become a veteran. It just did not pan out. Probably the only option for support is to go back to the DV group. By now there must be more than four attending. But most of them don’t have PTSD. I want to talk about that, not my trauma. Which is why I have PTSD, ironically. From not talking about it. Meant to post some intrusive thought stuff… right.

I hope the next month goes well. If my son’s anxiety gets any worse, I would have to put him on tranquilizers. I have to remember to get him his L-Theanine on a regular basis, and to slip my own supplement into my bag for his doc to look at tomorrow. I want her opinion for the both of us.

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Feeling Awful

Our favorite neighbor, a boy the same age as my oldest, became upset with me tonight.
He is underweight. The doctor wants to get more calories in him. His mother has been trying to get him to eat more, plying him with sweets.
Tonight he was at my house for dinner time and he did not like what we were having. He ate nothing. When his own dinnertime was underway, I sent him home to get a bite, telling him to come back when he was done.
He was a bit miffed with me, but I told him again just to eat and come back to play. That we would wait for him.
He went home and threw an unholy fit. His mother was already exhausted. I felt awful. I went over there after it and I sat on the front step and I apologized and talked to him about his feelings and we cried a bit.
My son was sad that we could not have our usual time to play together with our neighbor.
I feel so responsible. I knew he was an EBD kid, like mine. I wish I had done something different so that this had never happened.

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Fearful and Phobic, My Son

My oldest son has taken his separation anxiety to a new level.
He cannot be alone in the same room any longer, and now he will start having hysterics in a room full of people if you mention to him that it is time to go to another room, because he is assuming that no one else is going with him. Assuming the worst, without reason. He has always been accommodated on his anxieties, he should know he can trust his family by now. Completely irrational fear.
I am second guessing my decision not to put a seven year old on SSRIs. I bought him some L-Theanine and will give that a go, first. Then I will wave my own supplement under a doctor’s nose and see what the doc thinks about adding GABA to the L-theanine. Because I cannot live without that combo.
I am so sorry for him. This has become a crippling anxiety, this paranoia.
I don’t know if it is from his PTSD or his autism. He says it is from watching movies. He has never seen a scary movie, it is your average PG fare, but he finds aspects of even those to be disturbing, like certain robots and etc.
So we have been on Tinkerbell and Strawberry Shortcake for two weeks during movie time.
I don’t know what else to do.
I have been giving him talks to hopefully make him feel empowered, about how he can out-think his fear, and I have been having him repeat after me, addressing his fear and telling it to go away and etc.
I have turned up the affection, brought back the ¨Caught You Being Good¨ tally sheet, and changed his medication as well as adding this supplement.
At first he beat it by carrying a Lego sword. Then with a flashlight. Now nothing works, not even his sister can accompany him, he insists on it being me. Today when we were waiting for his brother to come out of the locker room after swimming lesson he shadowed me, wherever I stood he stood, no more than a pace away, while playing an app on my phone. Without looking up, he followed me two steps this way or four that way, to always be at my elbow. I don’t mind, I just worry about what is happening in his brain and his nervous system, if he is always flooded with fear.
I suppose it is better than him running off.

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Charter School, or Not.

Today was my first meeting back with the parent group who the child psychologist had asked to begin a charter school.
She had planned on us having a speaker from a charter school on the same concept about an hour away, but as that did not work out, she asked us to talk about the charter school concept among ourselves instead.
After enduring some small talk about pizza I found a space in the conversation to mention that I am completely on board but limited on time due to my children’s appointments and my own work schedule. I listed what I could contribute, and even gave the time of day that I could donate my time.
Then the other parents started asking questions and I found out the hard way that I was the only one who had spent time researching the charter school laws and guidelines for our state.
Embarrassing. Were they not interested?
I am not an assertive person, and I am not a leader. I don’t even correct people when they mispronounce my name, unless they ask me how to say it. I am not the go-to person on charter schools. I am looking for the one who is going to pull this all together and take all the credit so I can meekly donate my time writing things and making phone calls.
I let another parent know, who has far more contacts than I, and suggested we get an FB page or a forum going on this.
We will see.

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Easter Sunday

Easter morning went really well. There was a lot more bickering than normal, some crabbiness, and it was as expected. My children are always out of sorts at any change in schedule, even if it is a positive change.
After lunch we tried for nap time, but the baby wasn’t having it. We had Easter hunts and brunch at home and a trip to the store and she was a bit keyed up.
I let her stay up, and we went out for a bike ride instead.
My oldest child ran into me. I told him quite strictly he may not do that to anyone. Then he crashed into his brother, on a bike (I was on foot, pushing the baby in a stroller). His brother got up protesting and hopped back on and kept going. My oldest had pushed the chain off track with his recklessness, and his bike needed some help. I yelled for my middle child, he kept going. I looked after him in despair.
I could not leave the baby and my most special needs kid on a street corner and run after him. I am fast for my age, but he was far. Neither of those kids standing with me have very good judgement. I could not leave them there, even for a minute.
He looked back, rather over, having turned a corner, and I waved him in. No response, just biking forward, though he had seen me, twice.
I had to choose. I hate doing that. I had to bring the oldest and the youngest home and then go back out for middle child.
Who was merrily arriving just across the street as I came out.
I was furious.
Before we left I had told him if he got too far ahead, to turn around and come back. Not stop and wait, but to turn around and come back. He not once did this. He went around an entire block, which was undeveloped, but was not fully in my sight, either, due to trees.
My children are not allowed to leave my sight when outside of our home, unless we are at an indoor play park with tunnels. They KNOW this. They repeat this, to me, to each other. It is practically a family motto. Stay In My Eyes. It was the rule of the shelter, for good reason, and I kept it.
I was so angry, I would call it spanking mad. But of course I did not. I did tell him, as this was a safety issue, that he was lucky I do not spank. I went over with him, and his brother, all the issues of that bike ride. In my drill sergeant voice. It was loud, and not my usual MO.
I sent them to their room after disconnecting their electronics and got the baby a snack.
They asked me for help in opening a puzzle. I refused. When asked why, I said because I am angry that you don’t care to follow safety rules. I told them I don’t feel like helping you when you don’t feel like staying safe and have left your room when instructed otherwise. Oldest started crying and told me he was sad. I told him it was not really my problem that he was sad, because recklessly riding your bike is not something that I can let him off the hook for. This is not the first year that he has thought little of plowing into people.
I pulled up a video on how to secure the chain properly and went outside with my tools, which did not fit the bolt. I did it by hand, as best I could, which did get it all functioning satisfactorily. I need to buy some tools in larger sizes.
Then I called the boys down.
They complained of being hungry. I told them I was not very concerned about that. I advised them that hunger is tolerable, but violating safety issues can lead to permanent complications in our lives. I told them I was disappointed and that my first instinct is to keep them in the house forever and never let them play outside if they choose not to follow the rules. I told them that would not be very nice, and they have a chance, right now, to prove to me that they can follow the bike ride rules. I gave them the basics, again.
We went back out. Oldest son failed the first round, when he wandered across a street. Oldest son failed the second round, for the same reason plus riding in the street curbside rather than the sidewalk. Middle child got too far one time, the home stretch, though he was very conscientious the rest of the ride not to get too far ahead of me.
The baby told me quite a few times that she was behaving, had behaved, and would continue to do so. Which made me feel pretty darn awful though I cheerfully agreed with her.
I informed the boys that they would have to pass a ride before we could go off the path we took today.
I hope the neighbors didn’t mind my yelling.
At home I fed them well and they asked to pick a movie. I told them they could watch bicycle safety movies. So they did, and reported all that they had learned to me, of their own volition.
I told my son later that I am not sorry for yelling, as it was a serious issue, but that I am sorry if the yelling scared him. He said it did not. He remembered the last time I was so upset, when the baby lied to me about where her belongings were and it cost us an hour’s ride in a downpour at night. That was a year ago. His memory works. I hope he remembers this.
I hate yelling. As my son went out of sight, I just kept seeing a truck pull up and him being pulled into it- in my mind- my PTSD going nuts. I am pretty sure I could have stayed calm if I did not have this trigger. I should have stayed there, left the nonworking bike and the stroller, and walked with my other kids over the grass to a point to try yelling for him again before he went behind the trees. Instead I hustled my other kids inside behind a locked door half a football field away before meeting middle child. I just went nuts in the exposed open. I had to get us out of it. I don’t think I can be found, and if found, I don’t think it likely that a successful stalking operation would occur, but my mind does not analyze when triggered. I just had to hide us. Any vulnerable moment does this to me.
They know the safety plan. We need to practice it. Maybe that will calm my panicked self, some successful safety drills.
I am lucky my oldest son can ride a bike and sometimes tie his shoes. Last year I never thought that would happen. I have hope that he can get this. I want him to be able to drive, so the sooner he gets this sort of awareness down pat, the better.
I am going to have to go back to whispering everything with a hand on one shoulder and my face lowered to their height. I hate doing it the yelling way. It seems the boys are back to not hearing me unless I yell. Some of it is ADHD, and some of it is me not accommodating their executive functioning issues. It is so hard to instruct them over and over and take them by the hand to the task that needs doing. It is so time consuming, so frustrating that they cannot just go to put something away, brush their teeth or remember basic safety rules. But reminding them over and over until I lose my patience is far worse. I will give it a few weeks and change tactics if it yields no results. I will also keep showing them those bicycle safety videos.
I have to do better.

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Easter, or Christmas?

When I was a kid we went outside and found eggs, inside we might have more and we found our baskets, which had candy and maybe a stuffed animal or a small toy.
Today on Facebook I see people give their children bikes. For Easter. Patio toys, electronics.
Did I miss something?
I know I missed Easter doings for seventeen years, but is this typical, to give large gifts to children for Easter, things that do not fit in a basket?
I am trying to fit into popular culture.

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Autism Awareness, Autism Acceptance

I did not wear blue on April 2nd. I decided that wearing blue, sans any mention of autism, would simply go unnoticed. I am not the best spokesperson for autism. If someone suspected I was wearing blue for autism, and asked me if I were, I would simply affirm.

What else should one do? I am not terribly assertive in person.
If wearing blue is for awareness, what are we making people aware of? The fact of autism, that it exists? If someone does not know that, then they are ignoring media. How would a media campaign reach them when the news cannot?

I agree with the critics that the crisis that requires awareness is the lack of assistance and accommodation for autistic adults. Our kids are supposedly helped by laws in the schools and maintained by their parents, but our adults often have trouble getting and holding jobs, which means trouble with housing and just plain living. I also agree that this starts with acceptance.
I did not find any red shoes that I liked that were affordable. I have messed up feet. I like the idea, but much like wearing blue, I cannot see that it will affect anything or that many would notice. A flyer would do better.

I will not wear anything about autism that has a puzzle piece on it.
My son is not a mystery to be solved. He cannot be cured. He is not a puzzle. He is whole. He is a kid, like any other kid, with more quirks to him than most. He is a person. The puzzle piece thing pisses me off no end.

I am not saying that the whole world needs to speak literally and hush up and dim the lights to accommodate my son. I think if he could find a job where he could wear sunglasses and his earplugs that would be fantastic. If he could work in the fields he is interested in, his employer would be very happy and I suspect would accommodate him simply because his productivity would be through the roof. I think if people stopped making fun of or ostracizing those who are different, it would make the future look brighter for him and everyone else. How many differently abled people end up with mental illness for what they suffer with therapies or bullying or lack of acceptable basic housing or food or jobs? Employment is where we need the most help, employment and social services.

I want his basic human rights respected. He cannot do things the way his sister does, nor react like her. As my firstborn, he is normal to me. In fact, he and I are alike in some ways. I get him. I really know where he is coming from. So I don’t see anything wrong with him. It all makes sense to me.

I don’t know what to do for autism awareness or autism acceptance, though I am glad there is a day or a month dedicated to it. I do know that Autism Speaks will never speak for me. Their name is trashed, and I want nothing to do with them even if they start acting human. Too little, too late. How I wish their charity went to the current issues and not eradicating perfectly good people from the gene pool.

Does my son remember what his father said about him? Or why his father would beat him? Would wearing blue have changed anything? Would the message put out by Autism Speaks have motivated his father to accept his quirks and tantrums and sensory issues and commit to helping him learn coping skills via positive methods? I don’t think so. I think Autism Speaks would have seen his father as a victim, justified with their sympathy in any horrific reaction. My son is not a burden. He is a potential, like any kid.

My son is my son. He is fantastic. I don’t know what he would be like if he were not autistic. He would not be him.

Happy Autism Acceptance Month.

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