I apologize that I have not been posting much. Life has gotten completely away from me. Normally I look forward to school starting and life getting back to normal, but this year it hasn’t yet.
The school here has gone to personalized learning and they were not properly prepared so all is in chaos. Children, parents, teachers and staff are all stressed and unhappy. Crisis after crisis seems to be the day to day norm now.
Also they have not yet been able to find a permanent aide for my son. It’s in his IEP that he needs an aide. Constant changes of substitutes will only last so long until there is a blow up. He has never responded well to change or transitions so this is very stressful. I wait each day for a call that something has gone wrong. I’m terrified of possible violent outbursts.
Depression and anxiety is getting to the dangerous point for me. I’ve started going to a counselor, but there isn’t much that can be done to change a lot of my situations so I’m just spinning my wheels in the sand trap of false hope. Slowly, very slowly I’m trying to claw my way to the surface where I hope to get a breath so I can continue on.
I hope you will all be patient with me in getting back on track.
Thanks for still being around.
Honestly, one of the saddest and yet most triumphant songs of human achievement.
I looked up on the NASA website about how to make a pin hole viewer.
I used a cereal box and some tin foil and tape.
My friend who lives next door came over and we made a few more for her kids too.
They are goofy looking but they worked.
If you looked in the top end you could see the tiny little dot that was the sun.
We stood outside looking in our boxes when her son said the library was giving out glasses down at the park. He took off on his bike and came back with one pair.
I tried to take a picture with my IPhone and the eclipse glasses. It didn’t really work.
Pretty soon most of the block was outside and came over to see what we were doing. We were passing around glasses and boxes talking about how we remember seeing the one when we were kids.
My son loved it. He was so excited about the eclipse. Autism didn’t get in the way this time. He looked in boxes and used the glasses just like the rest of us. He was great and didn’t even throw a fit when it was over.
We got to goofing around and tried the “finger waffle” method of seeing the eclipse. It didn’t work too badly.
We were really lucky to have completely clear skies to see the eclipse. Unlike my poor hubby, who is in Salina, Kansas right now. He only got a short glimpse because of the clouds.
After is was all over, we came inside and watched the coverage on tv. It was cool to see all the people coming together across the entire nation in wonder for something like this. If you’ll forgive the pun, this event has eclipsed the strife that has been so prevalent in our nation for too long. It is a good reminder that we can be one people after all.
We’ve been having a rough summer.
My son always has trouble with summer, because he is autistic. The normal trials of summer bother my son too like boredom and cabin fever. In that he is like all other kids, but there are a lot of other issues that come into play. For example, thunderstorms. He’s terrified of them and yet gets upset because we aren’t having a storm every time there is a cloud. There is also the heat. He loves to be outside but the heat gets to him as well as the allergies that come with summer.
This year has been particularly bad because not only has it been over 90 the whole summer but the air has been filled with smoke from all the wild fires. Outside is not healthy. Inside is boring. It’s a brewing storm. Then you add in things like fireworks from the 4th of July. Loud unexpected noises that sound like thunder happening throughout the nights makes him very edgy. For weeks after the 4th he jumps at every little sound. He wears sound proof headphones, but the fear is there even if the sound is not.
It finally came to a head one day when he hadn’t been sleeping well. It was a couple of weeks after the 4th and we’d been fighting to go to bed every night . He hadn’t been sleeping and neither had I. Bad combination. He was playing video games. (He likes mini golf) and he couldn’t go into a shed in the background. I told him that it was just part of the scenery and he got upset and started to bite his arm. I told him to go into his room until he could be calm. In the few seconds it took for me to set aside the game controller he had gone into his room and slammed his head into his window with enough force to splinter it.
It didn’t hurt him any, although he had some broken glass in his hair. I had to first get him calm and then get all the glass cleaned up. But he was upset to begin with, then he was upset that he had broken the window, then upset that I couldn’t magically fix it, and upset that I was upset. It was a long time before we could get sorted and then right after that a thunderstorm hit. Needless to say it wasn’t a good day.
It was a this point that I began to think about medication. I hate myself for thinking about it. I don’t like pills. I don’t like how I feel when I take them and usually I have bad reactions to them. So the thought of putting my son on them when he can’t tell me if he is feeling weird makes me shudder. We had tried him on medication once a long time ago when his violent outburst were getting out of hand and it had turned him in to a weeping pile of mush that was still violent. We gave up, threw away the pills, and learned to live with the outbursts.
But he is getting bigger now. He’s 12. He’s almost as tall as me and weighs 120 lbs. So off we went to the doctor. After a long discussion, the doctor decided that it was probably anxiety that was the route of the problem. If we could get that under control then he might not be a danger to himself. I was willing to give it a shot even though I was wary of the possible side effects. The second problem was sleep. I found some chewable melatonin and I hoped that would help.
The first week was amazing. He was going to sleep because of the melatonin and although he was still getting up in the middle of the night, it was still an improvement. The Sertraline was working. He was in a great mood. We had to make a trip to Helena, which is a two and a half hour drive, for my daughter’s orthodontist appointment and I was expecting a blow up when we had to go home. But he was great shopping and he was great coming home. I didn’t even know how to handle a trip without a melt down.
It was great while it lasted.
About a week into the medications, we were watching tv during dinner and the character’s gloves had run away and gotten into some trouble and were sent to jail. In the blink of an eye, my son exploded. He was pounding his fist on his tray knocking food everywhere and then started to bite himself and hit me and his sister. It was weird! Usually there is some warning before a meltdown but this was like a lightening strike out of a clear blue sky.
Over the next couple of days he started to get worse. He just kept getting really angry over such small things. Then the big blow up came. My daughter had another dentist appointment this time to get five teeth pulled. (I know that’s a lot, but her regular dentist hadn’t been doing his job and let 4 years go by without telling us that she was going to have a problem with her baby teeth not coming out. So now we are in dental crisis, but that is another story.)
Now here was my first mistake. My son is scared of the dentist but is also really fascinated by it and as soon as he knew my daughter was going, he started asking if he could have an appointment. I told him he would have to wait for his appointment. The longer we sat in the waiting room, the more agitated he became.
Here was my second mistake. I should have known this trip to the dentist would be hard on my daughter and I should have found someone to watch my son while I took her to the dentist.
You have to understand at this point that my son doesn’t handle other people’s pain well. When he sees you cry he gets upset because he doesn’t understand the reason. Often he will attack the crying person. I am assuming because he believes that will give them a reason to be upset so it makes sense to him in a backwards kind of way. Needless to say our family tries to keep the crying to a minimum and let it out only when he isn’t looking.
Unfortunately my poor daughter couldn’t help it. She’d never had dental problems before so this was her first experience in having teeth pulled and five at one time was traumatic. She couldn’t help it she cried. This set my son off. He didn’t understand why his sister was upset.
Here was my third mistake. My daughter wanted to get somethings from the store despite how she was feeling after the dentist. I warned her against it but she insisted that she was fine and she could handle it. So I stupidly listened. Half-way down the street my daughter changed her mind. She was in too much pain and wanted to go home. Before the trip I had warned my son that if his sister didn’t feel up to it then we were NOT going to go shopping and we would just go home. I thought he had understood, but when we started down the street toward the stores and then turned around, he got upset.
Here was my fourth mistake. I didn’t take him to get food. It was about lunch time when we finished at the dentist. Because my daughter was feeling so awful I didn’t want to make her sit and wait while we ate. Instead I took my son to a gas station and grabbed some of those deli burgers and chips and a bottle of milk and headed out. He really wanted to get food at a restaurant and got upset.
Here is my fifth mistake. I didn’t stop at the car wash. It is a treat for my son when he is good to go through the automatic car wash before we leave town. Again, I didn’t stop because my daughter was feeling so badly. I should have know better. Foregoing the car wash always causes a melt down. It was the final straw.
From that moment on it was a nuclear fallout meltdown. The drive back from Great Falls in an hour. Usually the meltdowns don’t last more that half an hour and usually we can get him out of it by playing I-spy or something. But this time I think the medication was in play. Nothing would stop him from pulling his sister’s hair or punching her from the back seat. He was spitting and trying to break the window with his fists and his feet. Foolishly I stopped on the side of the interstate to try and switch everyone around so that I could keep my daughter safe from his attack.
We ended up chasing him around in the ditch and trying to tackle him to keep him out of traffic. I’m sure the people driving by thought we were trying to kill him. He was punching and kicking me while I tried to get him to calm down and get back to the jeep. He grabbed handfuls of my hair and ripped some out. Finally we got him to the jeep but he got a hold of my daughters neck. In getting him to let go of her he got a hold of my hair and pummeled my head with his fist. I got kicked in the chest, repeatedly bit and he grabbed handfuls of my skin on my arms before I finally got him into his seat and buckled in. My daughter drove while I sat in the back by him and tried to keep him from kicking her and bashing his head through the window. Unfortunately that put me in the strike zone. He was so deliberate with his attacks. This wasn’t like his normal meltdowns. I kept telling him that I would be okay, that he needed to take deep breaths, that I still loved him and he would be alright, but nothing stopped him.
That was the longest hour of my life.
By the time we had gotten home I was near hysterical with terror and guilt. I had to wrestle him into the house. I sent my daughter downstairs out of harms way and took my son to his room. It was dark and he was still agitated. Then almost as quickly as it started he was back to normal. He wanted a drink and a snack. He sat down and started to watch tv. At that point I was doing my best to stay calm. I wanted to sob and curl up into a ball and shake, but I knew it would only set him off again. I stayed out of the room where I wouldn’t trigger him but also where I could keep an eye on him.
I am pretty proud of myself. Considering the craziness that we went through, my son came out without a mark on him.
My daughter only had a little welt on her neck. I managed to protect both my kids from harm. I don’t know how, but I did.
I called the doctor when things looked like they were as calm as they were going to get. We went over and the doc was shocked at the level of damage on my arms. He thought maybe we needed to up the dose of Sertraline because it seemed like it was working, and he get me some Risperdone pills to use as needed when things were out of hand. We went back home and I followed the doc’s orders. But over the next few days, my son stayed angry. He was mad about everything. He kept biting himself for tiny little upsets. So I talked it over with my husband and we decided to stop the meds.
It’s been three days now and he hasn’t had any blow ups. Well, there were a couple of small ones, but I’m not expecting miracles.
The thing is this is our life. I can’t say I’m not affected. I’m a wreck. I love him completely and I’m terrified for the future. I’m not scared if him. I’m scared of what he’ll do to others. This whole episode has turned my fears into reality. What happens when he goes to school? What happens if we go to Great Falls again?
I know that it may get worse as he gets bigger. I may end up with broken bones at some point. I don’t want that to happen, but I’m not going to fool myself. This is Autism. This is melt downs. It’s hard. I hope that we can get past this someday and he can have a productive life, but I fear the alternative. That it may get too bad and he’ll have to live in a home where he’ll be doped up and live a miserable existence. I don’t want that either.
Right now I’m not feeling real positive. I’m bitter at the world for the lack of help. I’m angry at myself because I should have known better. I’m disillusioned with my life right now. But it doesn’t matter. This is Autism and we get up every day and keep going. I love my son regardless.
He’s 12 years old now. It seems hard to believe. 12 years of struggling and fighting to get to this point. It seems longer and yet it doesn’t seem that long at all. I guess that’s normal. Most parents feel that way. I guess it’s different because it’s been 12 years of Autism.
Life is not easy when you have Autism in your life. Whether you are a parent of or are the autistic person, challenges abound. Let me give you an idea.
It’s been 12 years of communication issues. Sometimes he’s been unable to communicate at all, sometimes he can get across what he wants after a lot of effort. Sometimes it causes so much frustration that he becomes violent. Sometime we have the same conversation hundreds of times a day.
It’s been 12 years of health issues. RSV virus, Jaundice, ear infections every few months, dental problems, bruises and bite marks, behavioral issues, attention problems, sleep disturbances and allergies.
It’s been 12 years of sleeping issues. The first six years of sleeping in our bed because of night terrors, then the next six years of sleeping in his own bed but getting up multiple times every night, which means that I’ve slept on his floor more hours than I can count.
It’s been years of violent outburst and broken things. We’ve had to replace a TV, several chairs, and now a window. There are holes in the walls, a lot of broken toys, and quite a few rips in our clothes.
And yet through all this, he has grown and started to thrive. He has friends who adore him. Everyone in town seems to know his name and they always say hi to him. He reads, he writes albeit both really slowly and with difficulty. He loves to tell jokes. He laughs and plays. He knows what he likes and isn’t afraid to tell you. He loves to help around the house and help in the yard. Although he is usually terrified of new things, he loves an adventure. He’s terrified of storms but can’t wait for them either. He loves amusement park rides even though the surroundings overwhelm him. Animals love him although he is usually scared of them. He’s growing into a relatively well rounded young man.
I know that we have a really long way to go and not all of it is going to be positive. Sometimes every day is a struggle, but I look at how far we’ve come and I couldn’t be more proud of my son. He’s overcome so much to be the wonderful 12 year old that he is today.
Happy Birthday, Bubba!