I know people have wondered about it: the way that one of my dearest friends passed out of this world in silence almost a year ago now – without a word from me about it on my blog. I have gnawed a hole in one cheek over her death and the subsequent silence that has […]
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.
I have not slept well since before my father passed away. My memory has been affected, I am having so much trouble remembering even basic things- and it is affecting my work. I am trying to hide it. My kids lost out on having breakfast at school this next month because I forgot to turn in their menus over the past two days. I just now huddled over them on the floor and scanned them into my phone and emailed them in as a desperate attempt to see them fed- and they already get breakfast before they leave here! Why do I do it to myself?
I am running on empty and I get why people give up and give their kids a handful of M&Ms for dinner. I get it. But when I do that my children have meltdowns from the sugar and end up whining for M&Ms at each meal, and I regret it tenfold.
My middle son I just found in bed hitting himself in the head and crying because he doesn’t want to take swimming classes, and he has swimming in the morning. I get that he is afraid of drying drops and I get that he is afraid of swimmer’s ear and I get it. But to be seven years old and so disturbed that you are trying to hurt yourself over disliking drying drops is too much. I gently dragged him out of bed and taught him how to do push ups. I told him if he wants to hurt himself this is the best option, because it builds up the muscles he wants for archery and fencing. His form sucks but it doesn’t matter. He has to learn some healthy way to deal with things- and I hope this sticks. I hope with everything in me. I grieve for who he will be, how life will torture him, if his resilience is such as this. It hurts so much to watch him tear up over everything, to see him rankle at the word “no”. I want to give up, give in, cry myself dry. He is not violent any longer but he seems unable to cope.
My oldest child seems to be doing well, but he never looks up. He has no idea what is happening around him, he does not relate to anyone but rarely. He is always in a book- he is never present. At conferences the teacher told me she doesn’t want to stop him from reading but he has to do his math. I can relate. Two days ago Middle Child stopped him from walking into traffic with a book in front of his face. He is using it for sensory deprivation, I get that. Autistic kids are easily overwhelmed, but this is about growth and safety and health, too. His books are not a coping tool any longer, they are methods of escape. I have to treat books now like screens and designate times for them, take them away, etc. He won’t develop if he doesn’t participate in his life.
My house is dirty. We had archery all week, an hour and a half each night, and I have only had time to cook and feed them and clean up. I prepped food all last weekend and it was gone in two days. Everything a person needs to do for a home I need to do, and winterize it, too. I have about six hours to get it all done this weekend plus cooking and shopping for the week. Tomorrow we have swimming and we go to the pumpkin farm and Sunday we go up to their grandmother’s- so they can see she is okay living without my father. Oldest Child has been fretting over her nearly as much as I have.
I was absent from work for a few days for things I had to do after my father passed away and I still have not caught up from that. I cannot get ahead at work, this is the second month that I am continuously behind. My desk is stacked with papers that I cannot seem to get rid of.
I spend an hour on the internet every night. An hour I ought to be cleaning or cooking or planning or remembering all the shit I forget. I want my hour to read and I want more. I want another hour to eat in peace and talk to each child one on one about their day. I am tired of never getting it all done and I am tired of feeling like a failure every time I come through that door and see the mess still there. I am calling another family meeting tomorrow and going over expectations and listing the problems I am having with keeping up, like lunches. They want lunches from home, and rightly so, being dairy intolerant- but I cannot keep up with the cooking and the packing and the unpacking. I am drowning. I don’t know if children in kindergarten and second and third grade can help me with this, but there is no one else to ask. They already do help with laundry and chores and I want to do all the rest for them but I can’t figure out how. I need more time. I need another me.
I have neighbors with clean houses who also work full time. I don’t know how they do that.