These lovely girls are from Ft.Collins, CO. I used to live there.
These lovely girls are from Ft.Collins, CO. I used to live there.
Prom is upon us and once again the quest for a dress raises the stress levels of every girl around. Honestly I find the whole affair somewhat ridiculous. You have to find a dress, you can’t wear the one from last year, they are stupidly expensive and WTF guys get to rent theirs!
So we go shopping. My daughter is modest. She doesn’t like lots of skin showing so she wanted a long sleeved dress. HAHA! Everything we found was strapless or spaghetti strap. She tried some on then complained that she was naked! Then we found a two piece dress that had a long sleeved top but the skirt? It was poofy and barely came to mid-thigh! Who thought of that?
I told my daughter that if she loved the top then we could work around the skirt.
We went to JoAnn Fabrics and found a beautiful material that would match her top. We found a pattern and all the bits and bobs we needed to make it with.
Once home I sewed her the skirt that she wanted.
Long straight and with a split on the side.
She was very happy.
Not a traditional prom dress but she felt like a princess anyway.
Then came the hair problem. She went to the stylist to get it done up all pretty with a loose braid and all, but it didn’t last once she got home. It had to be redone. She she did it up the best she could and I fixed the rest. I’m no hairdresser but I think it turned out alright between the two of us.
Then the real fun began. She was going with group of friends and they all came to our house to take pictures together.
They have something here that is called the Grand March. I had never seen this until we moved here, but it’s kinda cool. All the kids who are attending prom and their families, or really anyone who wants to, come to the high school auditorium. They announce each couple or group of friends and they parade across the stage showing off their dresses and tuxes. They often do some pretty goofy poses, like my daughter did. Then they crown the King and Queen and they have the royals’ dance. Then the kids go to prom and the parents go home. It’s kinda cool because everyone gets to see all the kids in their finery.
So we got past another year. We spent less and laughed more. Prom was a success.
I was sitting in the line for the car wash the other day and I looked down to see my odometer and temperature looking like this….
Both were a repeating string of numbers. And at the same time I realized this explained my life pretty well. My car showed it all: repetition and zero miles an hour. Doing the same thing but not getting anywhere.
Life with an autistic child is often very repetitive and can often feel like you are spinning your wheels a lot and not getting anywhere.
Routines take over. Most days are exactly the same as the previous days and will be the same as the next one. We do the same things at the same time every day. Only the very small details change. Trying something new or going somewhere new can cause all sorts of issues. But at least we get through the day.
My kiddo is very stuck on the same clothes, so he wears the same four or five shirts and the same kind of jeans. Life gets complicated when he outgrows his clothes which is often these days. But at least he is wearing clothes.
My kiddo also has a very repetitive conversation track. We have the same conversation about eighty times a day, every day. Doesn’t mean he can’t talk about other things, he just doesn’t. I think it is easier for him to say the same thing rather than try to have a different conversation and have to struggle for the words. Kind of like reverting to default. So we talk about Moonlight’s (the cat) gray paws, over and over and over. But at least he is talking.
My daughter complains that we have the same meals all the time. It’s true. I’m not near as adventurous in the kitchen as I used to be. It’s too hard. I know you are laughing at me for that, but when every meal becomes a fight and disaster keeps striking while you are trying to cook, it gets old fast. I just want a quiet meal with no fighting. Pick your battles is my philosophy. So we eat a lot of the same things over and over. But at least we’re eating.
We have to go to the same car wash after every time we go shopping. We’ve tried to go without but it always caused a serious meltdown and we have an hour drive to get home. That’s a long drive when you have a Tasmanian Devil trying to destroy the back seat lol. Sometimes we’ve sat in line for half an hour to get through that particular car wash. But it avoids a meltdown.
So, yeah my car says it all: repetition and zero miles an hour. But it also says that I come more than 83,000 miles and I’m headed west. I may not be moving at the moment, but my engine is running and I’m pointed in a direction. Just because I’m not getting anywhere now doesn’t mean that I haven’t accomplished a lot and I still have the power to keep going.
All in all it seems pretty optimistic to me.
The bathroom is such a controversial thing these days.
So many people are worried about who gets to go where. Honestly, I don’t care. This isn’t about that issue. Well, not directly. This is about fear. A mother’s fear. Or could be a father’s fear.
There are so many challenges that come with having an autistic child. Meltdowns, communication, potty training, the list goes on forever. Working through them is just part of normal life when you have a special needs child. I’ve learned to take most of them in stride, but there is one that still terrifies me.
My son is 11 now. If he was a normal kid he would be going to the bathroom by himself in the men’s room. However, he is not normal. I don’t mean that in a bad way; it’s just a fact. He still has communication problems and often motor skill difficulties. He gets distracted easily and forgets what he is doing. I often have to remind him that he is in the bathroom to go pee not to play.
When we are out an about we have to use public toilets. If we are in a really busy place with lots of people, I often don’t feel safe letting him go into the men’s room alone. I will often take him into the ladies room because I can keep an eye on him and know he is safe. Believe me, I get lots of dirty looks from the women in the bathroom. I really don’t care. Safety first. My child is billions of times more important than your opinion of me. There is no telling who is in the bathroom or what they would do to him and it’s not like he could tell me if something does happen. And I know it isn’t just me. I know that dad’s with their daughters who have special needs suffer the same anxieties about the women’s room.
Another reason I keep him with me is the fact that he wanders. If it is just him and me and we both have to go, I can’t be sure he won’t be out before me and just wander off. Who knows what would happen to him?
Now comes the real problem. He is getting more independent. He knows he is a boy and he wants to go to the men’s bathroom. We stopped at a truck stop the other day because we really needed the bathroom. He wanted to go into the men’s room. My heart was racing and I ran into the women’s and peed as fast as I could so I would be done before him and be waiting for him when he was through. I was so scared that I wouldn’t be fast enough or that there would be someone in the bathroom that could hurt him.
It’s terrifying! Like we, as parents, need more to be afraid of or worried about. Going out an about in public is hard enough with meltdowns and over-stimulation issues. Now this. How old can he be before it gets too controversial and we end up in some kind of confrontation with an offended self-righteous bathroom guardian?
This is another one of those moment when life just seems too complicated and unfair. I guess the best I can do is try to pick and choose where we go because some bathrooms are better situated for things like this. It’s just a single bathroom or it’s a family bathroom, but it’s not always that easy. One more struggle that must be dealt with and overcome, somehow.
Pull Apart Bread or as some call it Monkey Bread or as we call it in my family Coffee Cake.
It is basically flavored bread that comes apart in chunks. There are a million versions of pull apart bread. Some are savory and some are sweet. In my family it is always sweet. As a child I never understood why we called it Coffee Cake because there was no coffee in it, but now I understand that it is because you have it with your coffee.
The recipe is simple.
Frozen bread dough, thawed.
Cinnamon and Sugar
Cut dough into small pieces. Dip in melted butter. Roll in cinnamon and sugar. Layer pieces in pan, let rise. Cook at 325 degrees.
Seems like an easy thing to make, and it is. Unless you’re me.
I thought it would be nice to make it and have it ready for breakfast in the morning, but I didn’t take into account that I was tired and my day had gone badly already. (By the way this combination always curses any attempt at baking.) I had already thawed out the bread dough and was committed to making it regardless of the imminent doom I knew was coming.
I started it after dinner. I cut the dough into chunks and melted the butter. Normally we use a fluted pan but I have had success with just using small 8 x 8 pans. So I used the small pans. I was zipping through the pile of dough filling the pans easily. No problems so far. I had divided the dough between two pans. Once they were full, I set them aside and covered them so they could rise.
In the meantime, I started my son on his nighttime routine. While he was in the bath I checked the pans and they looked ready for baking. I slid them in the oven and went back to check on my son. I had it all timed so that the bread would be done before he was ready for bed. Or so I thought.
For some reason the bread dough went through a growth spurt while in the oven, but only the outside edges. The middle stayed where it was but the outside overflowed and started dropping like doughy rain onto the bottom of the oven. Smoke started to fill the house as the sugar coating caught fire.
I turned on the extractor fan above the stove and opened the oven. Using a silicon ended tongs I removed the charred chunks of bread. They were like black rocks. I could have used them as sling shot ammo. I checked the bread and the outside was done. Nice hollow sound when I tapped on it. I thought they were done. Hahahaha, no.
The inside was completely doughy. This had never happened before. I wasn’t sure what to do. I couldn’t very well tear it apart and cook the inside as the outside. I took a cookie sheet and flipped the pans upside down on the trays. I figured it they were going to cook weird then I might as well go all out. Another 20 minutes and another round of smoke from the bits of butter and sugar that had already fallen filled the house. I opened the window too this time although that is not the greatest idea during winter in Montana. However, the bread was finally not raw on the inside.
It wasn’t pretty but it was edible. It actually tasted amazing. So even though I totally failed, I succeeded because it’s not the looks its the taste that’s important.
Normally I don’t like to air grievances on my blog but I feel that I need to address this issue. Facebook once was a way to connect with family and friends, to keep up with those you couldn’t see everyday. I thought this was pretty cool considering I live hundreds and in some cases thousands of miles away from my friends and family. I’ve been on it for ages.
I share a lot of stupid stuff like cat videos and jokes. I also share a lot of environmental pic and videos. I don’t post a lot of status updates on my actual life unless its something important that I’m proud of my kids for or something of that kind. I share things that make me laugh and rarely things that make me cry. When I share things that make me laugh they are usually sarcastic or ironic. I can’t help that I have a weird sense of humor.
Before I share, I always think about the repercussions of the more controversial posts and many of them I choose not to share. Also I also see a lot of horrendous posts that I don’t even want to look at, but I don’t attack the people posting them. There is no way to win a trolling fight on the internet. I don’t engage, I just move on.
Recently I lost a couple of friends. People that I have known all my life suddenly weren’t my friends on Facebook anymore. I tried to re-friend they but they haven’t responded. That’s when it occurred to me that it might have been because of one stupid meme that I posted.
You unfriended me because of one meme?
Yes, I actually thought that. I was completely shocked. I had grown up with these people in a tiny little town. They know that I’m weird. I’ve always been a bit off kilter compared to everyone else. I’ve always had a sick sense of humor. So why now? What changed that made me so terrible in their eyes that our friendship is suddenly broken?
I posted a meme on Facebook. I didn’t write it, but I thought it was funny in a very satirical way. What can I say? I have a very twisted sense of humor. It was a picture of the Women’s March the words said something to the effect of Trump got more women walking in one day than Michelle Obama did in eight years. I found this funny in a horrible way. It had nothing to do with Trump or Obama. It had nothing to do with my opinion on the Women’s March. I posted it because of the sarcasm and the satirical commentary on our society as a whole. Eight years of positive campaigning for women achieved lack luster results, but hatred of a single man brought marchers out en masse. I shared it to make a point. Our society is based on hatred now not tolerance or positive motivations.
I received mixed reactions about the post. Some people found it as funny as I did. Others told me it was a distasteful post. And suddenly I was unfriended. I was really hurt. I am not normally a person that seeks out confrontation. I don’t like it. I thought about taking the post down. I stewed for days about it. I thought I was a terrible person. I went back and looked at the rest of my post trying to understand if I was going off the deep end of Facebook with tasteless nasty posts. I searched and I searched my timeline and really surprised myself about how positive my shares really were. I never thought of myself as a positive person but I guess I am on Facebook.
So where does that put me? Am I tasteless and horrible just for one post or was it a quark compared to all my other positive posts?
Seems like a case of my life mimicking the meme I posted. Got more people hating me in one post that I have in nine years! Is this the way we want to live our lives? Where only hatred and effrontery can motivate people to action? I hope not. The very thought makes me ill.
This brings me to the friends that cut ties. If they are so easily offended do I need to keep them in my life or move on the people who are more tolerant and understanding?
Some will say that I need to work at them and wear them down. Teach them that tolerance and understanding comes from communication not from severing ties. Show them that there are many ways of dealing with situations and many ways of changing the world. Satire is one of them by very definition:
What happens when Mom gets sick? Same thing as everyday. She gets up and takes care of the same things she always does. There are no sick days or breaks. There is only the normal routine but doing it feeling terrible.
But what happens when it’s more than just sick? What happens when you really need to be out for the count?
I recently broke a tooth. It had a crack and I knew that it was going to go someday, but I chose to ignore it. Not just because I am Mom, but because I am terrified of Dentists. I don’t just mean kind of nervous. I mean full blown shaking and hyperventilating, with crying and throwing up kind of terrified. I don’t know why exactly. Something in my childhood probably. I have blanked out every visit to the dentist I’ve ever had. I used to be able to handle going. I was scared but not too bad. Then as the years progressed it’s gotten worse. Last time I went, I had to take a Valium before going and one again while I was there. But this time, it was the worst.
I went in to have them see what was going on with my tooth. I almost ran out of the waiting room. When I did get back to the actual room, I started to shake. I made it almost through the X-ray before starting to cry and hyperventilate. I never made it to the actual examination. I freaked out completely and they told me they would have to sedate me to do anything. That involved a “trial run” of the sedation because I react strangely to drugs.
For most people this wouldn’t be a big thing. They just get a family member to help and all is good. I, however, have a complicated life. First of all the only family that is around here is my kids. Granted my daughter is 17 and she could help me but I didn’t want to put the whole thing on her shoulders. Not only watching me but having to take care of her autistic brother at the same time. My husband would be the logical choice. I would have to make the appointment for when he was going to be home, but he works away from home for 6 weeks at a time. That kind of made it hard to schedule.
Eventually, I got the appointment and we went in for the work. I was praying for them to do the work if the sedation worked so I didn’t have to wait another six weeks for the next appointment. Thank God they did. My face is sore but the work is done. I’m not really sure what they did. I guess I have a crown, whatever that means. (Like I said I blank out any dentist appointments. )
Good thing my husband was there. I was at the dentist from 7 am until 2:30 pm then went home and slept until 5:30 pm. How could I have done it without him? By the evening, everyone’s tempers were getting short because my son was being difficult. He didn’t understand why mom wasn’t there. Mom is the one constant in his life. Mom is never gone or sick. He wasn’t completely awful, but he didn’t handle it well either.
No one really realized how important Mom is until Mom goes down. I’m not saying that Dad isn’t important because he is. I’m just saying that families rely heavily on Mom always being there and always being functional. It is hard on everyone when Mom goes down. SO go and hug your mom and tell her you appreciate her then give her a day off. You will all be better for it. Kind of like an emergency preparedness drill.
No one likes that moment when the walls come tumbling down, or in this case the coat rack. We came home from school and were hanging up our coats when all of a sudden PHOOMP! The coat rack detaches from the wall and accelerates into gravity’s clutches.
Nothing like a pile of wet coats on the floor and holes ripped in the wall. Of course my Autistic son had to be the one that was standing there when it went down. So I spent the rest of the day trying to calm him down because he thought it was his fault and it started a meltdown.
Well, that was fun.
I sat there in between my son’s bouts of lashing out and apologizing trying to figure out what would be the best way to fix this problem. The holes were a bit big. The current coat rack was just a board that wasn’t long enough to span the space from stud to stud behind the wall. Just putting it back up wasn’t an option.
After a couple of days the poor hamster turning my brain wheel got an idea. Longer board, totally new design and mounting. I scavenged my basement where the spare bits of boards from other projects cowered in the corner and found a 1×6 that looked hardy. I cut it to length and then decided to paint it because I didn’t have any stain that matched the cupboards.
My little brain hamster was really smart on this one. He thought I should make it match the boarder in the kitchen.
It took a while to get all the painting done. I did the bottom coat with some left-over paint from the walls and then I cut out a stencil pattern. I used craft paint to fill in the stencil.
Admittedly I didn’t do a good as job painting as I should have, but by this time I was getting fed up with the whole mess. It had been a couple of days getting it fixed and my son had been upset about it the whole time.
The circus of getting it up on the wall was a bit frustrating. The cordless drill I was using kept stripping out the heads on the screws. I tried adjusting the clutch but it didn’t seem to make a difference.
I managed to get it up and it should stay this time. It’s held up by six 2 inch screws in the studs.
I have to say it doesn’t look to bad and my son is no longer upset. So all is well and good in the world.
My son is Autistic. That means a lot of things. It means he has trouble processing his environment. It means that he has trouble speaking and using words. It means that he can become easily fixated on particular thoughts or actions. It means that he is often unable to make the right choices. It means that he feels his emotions so intensely that they often overwhelm him. It means that he often has out bursts that are dangerous to himself and others.
I don’t mean to say that he is dangerous, just that he is sometimes not in control. Sometimes it’s because of processing problem like over stimulation, but sometimes it’s because he isn’t getting his way. I know this. That doesn’t make him a bad kid, just a normal kid in High Definition. Most kids get upset about not getting their way and they may throw a tantrum or ten but they eventually can be reasoned with and they learn.
That isn’t always the case with my son. Often he can become fixated on what he wants and there is no reasoning with him. You can’t use logic. His eyes glaze over and there is nobody home in there. Just the driving thought that he wants something. If you can nip it in the bud before he reaches that stage, you’re good. If not, well then, best just to stay out of range and try to mitigate the damage.
There are many times when my son will hit, bite, scratch, kick, spit, choke, throw things, and bang his head. He isn’t mean. He just has trouble dealing with his emotions. After the meltdown is over he is very apologetic almost to the same obsessed level as the outburst was.
Recently I got a call from the school. My son was having a rough day. He didn’t want to come in from recess. Well what child does? Unfortunately my son took then ending of recess rather badly and he had a meltdown. His disappointment was so intense that he couldn’t deal with it. He started banging his head. He managed to bash his nose on the window frame of the low stimulus room where he goes to calm down.
His nose swelled and he ended up with a large welt on the bridge of his nose. The school was concerned and rightly so. They called me to see if I wanted to come look at his nose. After learning the details and talking with his teacher I decided to wait and see.
Does that make me a callous parent? No just practical.
I’ve been living the autistic life for eleven years now and I’ve learned a thing or two. I know that at any moment of any day a meltdown might happen. I’ve been kicked in the face, head-butted, pinched, scratched, punched in the ribs, bit, and choked. My neck used to have permanent gouges down each side that made me look like a tiger had attacked me. Does that make me scared of my child? No. Does that make me jumpy or reactionary? No. I’ve seen a lot of bruises, cuts and blood. Does that make me complacent? No.
It means that I’ve been there and done that. I know when it’s time to act and time to wait. I know that above all structure and carefully planned reactions are the best.
I know that if I go running to the school after a meltdown, it’s only going to make things worse. It won’t change his behavior and it will very likely undermine the authority of the teachers. It will only justify what he’s done in his mind. He has to learn that that kind of behavior will not get him what he wants.
Do I think this was a tantrum? Partially. He didn’t get his way and he reacted. However, the difference is that he feels the emotions differently and he has no way to control them once they hit a certain point. Hence the headbanging. Studies have learned that there is a reason for headbanging. In really weird way, it is how the child can get control back. It has to do with stimulation and chemicals. You can learn about it here.
I know this makes me sound callous, but I’m really not. I just know that this is my normal life. I don’t want it to be this way, but it is. I love my son dearly and it breaks my heart every time he hurts himself or anyone else. I feel terrible that others have to bear the brunt of his meltdowns. I’d rather it was me and not his teachers that had to deal with the pain. I wish that he would never have to be hurt, but that just isn’t in the cards for us.
The autistic life is hard. It takes its toll on everyone, but it hasn’t made me a callous parent. It just means that I’ve built up callouses on my hide. It’s given me a tougher and stronger skin to protect my heart. A heart that will always love my son no matter what may come our way.