Today I picked up my Oldest Son during a downpour. As we left the front door of his friend’s house I held the little umbrella up over his head. He didn’t realize I had one at first, and he was afraid of the rain and of getting his video game controller wet so he was immediately grateful. He looked back and said “What about you, you don’t have one?” Meaning the umbrella. I told him I didn’t need one, I loved him more. He said “More than yourself, you love me? I thought you loved me and you equally.” I laughed at him and hugged him under the umbrella and told him that’s not how it works. He was so surprised.
Category Archives: ASD
We have been free for five years. The criminal order of protection expires in six years. We are down to two appointments per week from eight. I don’t have to log violent incidents because they are so few and far between. Here is what I have learned lately:
If you have a violent or hyper child, try cutting out dairy. Every bit of dairy, even butter, even buttermilk pancakes. Taking away dairy works like an antipsychotic, I am telling you true.
Your birth control pills or your estrogen can be making you sick. The side effects I am free from now that I have gotten off of The Pill are:
Extreme persistent hunger
Eyes too dry to use contacts in
Sudden flares of temper
I never suspected my Pill was hampering my recovery. Hard to control your PTSD when you are tired and irritable! Why was I on the Pill, when I live like a nun? For cysts. I get cysts inside and out and I would rather have them than the stomach pain I ended up with. Cyst pain is easier to deal with than that.
My Oldest Son did not experience his yearly regression. Possible reasons for the relief: 1)his obsessive and pervasive tendency to check out of reality and into books as a coping method
2)his anti-anxiety medication
He did NOT, however, ever gain back some of the skills he lost last year when he regressed. He is currently showing signs of stress- chewing his shirts, so I am still holding my breath a bit. But school is over in a week. I think this is going to be a regression free year.
It’s okay to be lazy. Sometimes you can’t go go go.
Thanks to the Sheriff, the DA, the DV Liaison, the Medical Team, and the friend who let us move into her basement almost five years ago. You made all things possible.
My Oldest Son is autistic (you might already know that). By far my favorite symptom of his sensory processing disorder is his observation that seeing very endearing and adorable images makes his teeth go warm and soft.
Today he saw a lot of baby pandas in a magazine. Last time it was puppies in a calendar.
Some of us feel warm inside when we see such things. I think I have heard it described as heart melting or something similar. It is so cute that he has it in his teeth!
I hate video. I can watch movies, sometimes. Tension can bother me, suspense might bother me, and sometimes I just cannot sit still. I never watch them. Apologies to all those on my reading list here who put up videos. I read whatever you say about them, but I don’t watch them.
I can be triggered by videos as much as I can by real life. Loud noises, violence, aggression, sudden movements. In real life I am often triggered by my own children. They squabble, they scream, they run here and there, they jump up and down. It’s not like I lose it, but I can feel myself close to an edge. I have to calm them, remove them from the situation, distract them, or turn away when they are using the trampoline.
I have read a lot of books and articles on children. PTSD kids, trauma kids, autistic kids, ODD kids, ADHD kids. However, when I come across videos when researching an issue I just skip them. Because video.
Which is not so bright of me, I think.
Who should I be learning about kids from? Doctors? Yes. Doctors are good sources of information but it is just as important that I learn about children from children. Normally this is through children who have grown up and can vividly recall what it was like to be traumatized/developing autistic/angry/distracted. There is precious little out there from this last source. But that is changing.
I have known about and read about Amythest Schaber for years. But I have not been able to watch her videos, despite the fact that she has a pleasant voice and face. I just would rather read than listen because of my issues.
But I hit upon a solution for videos lately. I have been trying to keep abreast of Standing Rock events and live streaming video has been more informative on that issue than news articles. I put on the video and then I don’t watch it. I look away at pictures or something not moving and I go back and forth to manage the stimulation.
So after learning this trick this week (I know, seems simple to you but I have had this aversion…) I put on some videos by Amythest Schaber and found that what I term a regression she is calling autistic burnout. I had no idea that they could be the same thing.
The psychologist and I had begun crafting a plan to try to keep this year’s regression from happening to Oldest Son. We were going to treat it as a sort of breakdown, and were going to try to limit his overload and provide more one on one time and engage him in identifying and treating his feelings in the months leading up to his typical regression time. After listening to Amythest’s take on it I know now to add sensory diet into that plan. I am certain we will come up with more in the next few weeks, after the New Year it will become more critical. So we were on the right track but I ought to have more access to information now that I have the correct terminology.
So this is an example of how my own issues have limited my parenting. I think the date on that video was 2014. I ought to have watched it back then.
My Oldest Son has been seeing a physical therapist for four years. A child psychologist for three years, a skills therapist for four years (with a year off when there was no provider), and a child psychiatrist for two years. He also had social skills education at school for two years and a social group run by a psychologist with other autistic kids for over two years.
Yesterday the skills therapist released him as a client. He said the difference between my son of two years ago and my son today is night and day, and Oldest Son no longer requires his services.
We had brought the frequency of appointments down from twice monthly to once a month. So though I still have a lot of appointments per week, I get to drop one per month.
I wish I learned that quickly.
So my little family went in for flu shots. I was totally prepared. I had informed them beforehand, soothed their fears. I volunteered to go first, set up the order in which we would get the shots, and brought the candy.
Best laid plans, you know.
So I got my shot. Didn’t even hurt, which was surprising. I was very happy to be able to tell the children this.
Next was my Oldest Child, who immediately began his autistic scream (we call it that because of the decibel he hits- no one else seems able to screech so loud). He screamed and I reasoned with him. Middle Child took that moment to escape. I chased him down and found the nurse had made no headway with Oldest Child upon our return. I threatened to ground Oldest Child unless he would come quietly. He insisted I ought to ground him instead of giving him the shot. Oops. Middle Child escapes again, and returns from down the hallway upon being threatened with grounding. Grounding in our house means no video games, a horrible fate.
I can see Oldest Child has lost his hold on logic so I hold him down over the exam table and free his shoulder for the nurse. He gets his shot. He gets his candy. His screaming ceases. We turn to Middle Child, who looks to his big brother. I prompt him: “Oldest Child, please tell Middle Child that it didn’t hurt, he is scared.” Oldest Child picks up his comic book and with the biggest grin ever on his handsome face, a grin so big that his dimple becomes a crease, he says “IT HURT A LOT!” and he laughs. I tell him to cut it out and tell the truth, to help me out, and he repeats it, all of it, even the laugh.
Middle Child starts screeching and sinking to the floor. Had I any inclination the visit would go this way I would have had him out of his coat already. So I not only had to wrestle him off the floor, I also had to get him out of a heavy winter coat and somehow bare his arm. His candy rolled across the floor during the scuffle, the nurse frantically warned me not to choke him (trust me lady I know how to wrestle this kid) and somehow I got him pinned and she took the opening and gave him his shot. Thank goodness the nurse wasn’t about to argue with the kids or get help. She let me manhandle them like the Rottweilers I used to restrain when I was a veterinary technician, and she availed herself of opportunity.
The baby is by this time scared out of her mind. Middle Child did not feel the shot, because they don’t actually hurt. He made sure to tell her immediately, a kindness I sure appreciated. She was crying but she got up on the exam table like a civilized child and she clung to me while she got her shot and her lollipop and her sticker. She was relieved it did not hurt.
I don’t know if next year I should ask the the sitter to come along with me or if I should just practice on them for a few weeks prior- by pinching them on the arm while they sit quietly. Because even a gentle pinch is going to hurt ten times more than this shot did.
The boys are grounded for two weeks for throwing fits. The Oldest is grounded for two weeks and five days, because he ended up insisting five times that the shot hurt, and I give consequences for lies.
So yesterday I had the pleasure of speaking with the top authorities on epilepsy and seizure disorders in my state. Unfortunately I dropped a call at work while I was on the phone with them, so my boss took it and that was not considerate of me.
I was just in shock, because what they told me was so different from what the neurologist had said.
They went over the data gathered by the neurology clinic and the Children’s Hospital, and they told me that often autistic children DO present these “electrical activities” in their brain. There is no need to treat it, and indeed no treatment known for it, as it is not seizure activity. What did shock me, though, was their calm assertion that this activity DOES put my son at a much higher risk for seizures. That’s when I dropped the call.
They want me to carry the neurological equivalent of an EpiPen in suppository form, and time the seizure, should my son have one. If the seizure lasts more than three minutes they want me to stick a suppository in his cheek, or worst case scenario, in his anus.
So I am supposed to watch a clock. Can you imagine standing over your seizing kid (the very first time you see them have a seizure) and checking the clock? I will do it, though. I will. So the neurologist did not lay this out as an option, and indeed did not warn me that there was any risk at all. I liked him a lot, but this is very different information from the people he referred me to, and it makes me doubt all his reassurance.
I have a request in with the pediatrician for this emergency dose, and should have it and all instructions for it next week. Then we will hope he never needs it. You can be very sure I will never opt for a wallet over a backpack again.