Being a Callous Autism Parent

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.

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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.

 

 



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Ice Fishing with the 5th Grade

The 5th grade class recently went on a field trip to learn about ice fishing. The Montana Fish, Wildlife, and Parks department were in charge of the trip and we went out to Bynum reservoir. There were a lot of buses there from other schools. We had our lunch and then the kids played in the snow until they were ready for us on the ice. It was about 26 degrees but the sky was mostly sunny and there was no wind. All in all a beautiful day.

The kids got a crash course in ice fishing and safety. The MFW keep the fish that are caught for the science classes to dissect later in the year. They calculated that they needed 981 fish this year for  all the school but so far had only caught about 50. So the kids were eager to help catch as many as they could.

Then we headed out onto the ice. It was about a half mile walk out to where the holes had been drilled. The kids spread out and found a hole each. The ice was about 16 inches thick but it was a little disconcerting looking down through the hole and seeing where the ice ended and knowing that we were sitting on nothing but frozen water. There were plenty of volunteers and MFW officers to help the kids.img_8859

My son, his aide, and I trucked around to different holes trying our luck. You have to understand that my son being autistic doesn’t have much of an attention span, so we ended up spending about a minute maybe two at each hole before moving on. img_8857

At one point my son walked past a fish that someone had caught. It was laying on the ice waiting for the MFW to come and get it. As he passed it moved. He jumped and ran away screaming, but we got him back and showed him the fish. After that he got excited and wanted to hold it. We explained all about the parts of a fish. Then they told him that if he kissed the fish he would have good luck fishing the rest of his life.
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Now before you get all weirded out, it is actually a fishing tradition up here. At first, he was confused and skeptical about kissing this fish but after the bus driver explained he was game and gave it a big smacking kiss!

After about an hour of fishing unsuccessfully, most of the kids were getting bored. Some of the boys started plowing through the snow on their knees and found a fish frozen just under the surface of the ice. So that kept them going for a while. My son decided that he needed to make snow angels.img_8865 And his aide joined in. img_8863

 We had some trouble getting back to the bus. My son didn’t want to leave and it turned into a wrestling match on the ice, but finally the MFW came along with their ATV and gave us a ride on the little trailer they were pulling. The kids didn’t catch very many fish, but they had fun. All in all it was a good day.

 

Halloween done quietly

This year seemed to be a quiet one for Halloween. Probably because it was on a Monday. Normally we get a lot of trick-or-treaters on our street. We usually go through at least three big bowls of treats and got out trick-or-treating ourselves, but this year we barely got through a single bowl. img_8622

I bought a lot of little goofy toys to give out because not everyone is great with candy and kids love it when there is something left after they’ve eaten their sugary haul. img_8624

It worked out well because I let them choose what they want and there was mostly candy left. The kids loved the toys!

We didn’t do much for costumes either.

img_8542Autism makes costuming hard sometimes.img_8610

You can never go really scary, and he gets scared of other kids too.

Originally my son wanted to be a super hero, so he got a Batman costume but then became scared of it. (I don’t know why, it’s just how he is.)

 

 

 

img_8541My daughter did the img_8606same thing, she wanted to dress up like a nun, but changed her mind and ended up a cat. She also didn’t want to deal with her costume at school so she dressed as a Nudist on Strike.

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Eventually we ended up a kitty, puppy and a veterinarian, haha.
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We also made some blood splatter Halloween cupcakes.  My daughter took great pains in decorating just the perfect way.

All in all it was a good Halloween. Quiet, but good. 

The Liebster Award

Hi ya! I was nominated for The Liebster Award by CREATIVITY✒📃😍✌

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What is a Liebster Award?
Well, it’s an award that typically recognizes up and coming bloggers recognizes bloggers, by helping others discover new blogs and facilitate community building.

How does one get it?
In order to receive a Liebster Award, you must be nominated by a fellow blogger.

Here are the rules:

  1. Thank the person who nominated you and answer the 11 questions they’ve written for you.
  2.  Nominate 11 people and give them 11 different questions to answer.

Thank you Ankita!

Here are Ankita’s questions:

1. Why did you start with blogging?

I was told that blogging was great for authors as a starting point in creating an author platform. And so it began…

2. Which three hashtags best describe your blog?

#autism #family #writing

3.How do you get new ideas for blog posts?

They just sorta show up. Usually I use things that are happening in our family that might help others in similar situations.

4. Who or what inspires you (to blog and in general)?

To blog: usually my kids or my husband. In general: music, beauty, and irony

5. Which talent don’t you have, but want it?

I want to paint. I can sketch a pretty good picture but when it comes to color and paint, I am utterly defeated.

6.What makes you smile?

People. They are such a funny animal, always doing things for weird reasons and yet they have the capacity for such greatness and love.

7.Who is a hero in your life?

There are so many people that I look up to and admire as heroes, but the one that stands out is my theatre teacher from college, Richard Kuebler (R.I.P.). He recruited me in high school and set me on the path I’m still traveling. He showed me what I wanted out of life and taught me a whole new perception of life through theatre.

8. Are you a planner? Or are you spontaneous?

I plan. Like a general. With an autistic son, I have to. I usually have plans A-Z and then, just in case, a few contingency plans.

9.What is the most amazing thing you’ve seen while traveling.

Dunnottar Castle in Scotland. There is room underneath it that has the darkest dark I’ve ever seen.

10.Is there a sport you’d love to try, but haven’t yet? What is it and why?

Boxing. The closest boxing gym that has classes for women is an hour away and that won’t work with our family’s schedules.

11. What’s your biggest weakness?

Low self-esteem. I struggle with the idea that I’m good enough. I guess I never developed an ego lol.

And so, here are my nominations for the Liebster Award…

davecenker

Raising 5 Kids With Disabilities and Remaining Sane Blog

Storytime with John

Big Red Carpet Nursing

Mytwosentences

theGoodVader

Scale it Simple

Squeeze the Space Man’s Taco

Just A Small Town Girl

Destination Humanity

Aesthetic Miradh

Here are my questions….

  1. What would you choose as a profession if you could do anything?
  2. When did you know what you wanted to to with your life?
  3. What is your favorite song?
  4. Name somewhere you want to visit but have never been to yet.
  5. What would be your perfect vacation spot?
  6. What do you want to be remembered for after you’re gone?
  7. Have you ever practiced random acts of kindness (you know, running up and giving a stranger a hug or sent anonymous notes of appreciation, that kind of thing)?
  8. Have you ever helped a stranger and if so what happened?
  9. What is your favorite meal to cook and why?
  10. Do you have a guilty pleasure and if so what is it?
  11. If you could tell younger self to change one thing, what would it be?

If you’ve been nominated already, sorry. You can ignore me. You don’t have to do it again.

Thanks again, Ankita!

I Am Woman, See Me Fix Toilet

Toilets have never been my favorite thing. If you look through my posts you will find quite a few that visit the toilet subject and I don’t mean they are crappy. I remember rather fondly the post How to dispose of a stiff with your teenage daughter.

Here is my latest adventure in the House of the Porcelain God.

Our toilet tank had a crack. I can’t say if it was because of manufacturer flaws or if it was because my son leans back against the tank too hard putting stress on the bolts that hold the tank.  Either way, it had a crack. We looked into getting a new tank but surprise, surprise, you have to buy the whole toilet. So like any good homeowner, I procrastinated and himmed and hawed.

Until it was too late.

My son was upset about Halloween. He wanted it to be right now and didn’t want to wait.He had gone to the bathroom and as he sat there trying to make an offering to the Porcelain God he became more and more upset about Halloween.  He began to cry and then to scream and then to sob all the while sitting on the toilet. Now remember he is autistic and this means sometimes he gets into a meltdown cycle and there isn’t a lot to be done.  Often at that point, I try to avoid giving him attention because it only increases the problem. Sometimes he will become calm on his own. But not this time.

Miscalculation on my part. Never let a child in meltdown stay on the toilet.

img_8523 img_8530He did not calm down. Then next thing I heard was gushing water. I thought he’d turned on the faucet or something. I rushed into the bathroom to find him sitting not on the toilet but on the side of the tub staring at the fountain of water bursting from the bottom of the tank.

Bath toys were pairing up and looking for Noah. The rugs were soak and there was a mini waterfall going down the heater vent. I splashed through the flood that was racing across the floor and turned off the water to the tank.

For the next couple of hours it was mops and towels and buckets in full force. Water had not only covered the bathroom floor, but it had also dripped through the floor and into the bathroom downstairs which is right below the upstairs bathroom. So, I had to clean up two bathrooms. The water in the vent headed south down the ducts to drip out at a junction in my basement right next to the furnace. Had to leave a bucket there to collect the drips all night.

Needless to say Momma was not happy.

Once it was all cleaned up and as dry as it could get, we moved on with bedtime. The next morning we headed off to Great Falls to find a toilet. Nothing like looking for a new toilet on a Sunday morning. Bought a whole new toilet and drafted my poor daughter to once again help. This time was more like Frankenstein bringing home body parts to fix the dead Porcelain God. Maybe I should have called this post “How to teach your daughter to resurrect the dead.”

img_8525Any way the box made it home and I img_8527took out the new tank, read the instructions about fifty times and then installed the new tank. I did a total redneck number behind the tank though. Got a Styrofoam chunk and wedged it between the wall and the tank then duct taped it in. Hopefully that will keep my son from banging into it and cracking this new one.

So far so good it hasn’t leaked…yet. I’m trying to be optimistic and believe that this will be the last time I have to mess with the toilet but then again I’m delusional sometimes.

The Lies that are the Truth

I always tell my children not to lie. It is a good thing for them to know and live by. I try my hardest not to lie. It’s not easy. Sometimes it is the hardest thing in the world, but I believe in telling the truth.

But this morning as I was walking my 11 year old autistic son to school, I realized that I was lying to him.

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I said to him, “Say in between the lines of the crosswalk. That’s where it is safe to cross.”

This is true according to traffic laws. That is why the crosswalk is there, to give a safe place to cross the street.

Then I continued, “It’s like a bridge, you wouldn’t cross a river without a bridge, so don’t cross the street without a crosswalk.”

At that moment, I realized the lie.

The road is no different inside the lines of the crosswalk than outside of it. It is merely lines painted on the pavement. It’s not safe. There is no magic barrier there that will keep him from getting run over. (That thought alone scared the Hell out of me.) It’s just lines.

The only reason that it is safer to cross at the crosswalk is the teaching we get in driver’s ed. The traffic rules that tell us to look for pedestrians in the crosswalks. That doesn’t mean that drivers will, just that they are supposed to.

So in lying to my son I gave him a false impression of the world, but it is a lie that has to be told. The belief that a crosswalk is safe is the only thing standing between me and a child in a coffin. If, in his mind, he believes that the crosswalk is safe then he will be forced to live within that stricture. He will cross at the crosswalk making his life safer than it was before.  It won’t keep him from getting hit, but it will up his chances of staying safe.

It is a lie that has to be told. Ignorance often keeps us safe. If you don’t know you can be killed then you don’t panic about it.

When it comes to Autism, one must be very careful with the ideas that one presents. It comes down to control. Often my son just does what he wants because he has no idea what will happen to him. So I must tell him a truth that is a lie to keep him safe.

I tell him all the time, Big House is safe. (Big House is what he calls our home. I don’t know why, he just does.) Big House is safe from thunderstorms, wind, rain, loud trucks, trains and all manner of other things that he is scared of.

I know for a fact that wind can destroy houses. (I lived in tornado land for a long time.) I know that fire from lightening could burn down our house, we could be flooded, or even have a truck drive through our front door. But when it comes down to it, Big House is safe because it has to be.

It’s another lie that is the truth. If I didn’t tell him this lie then he would never sleep at night and he would be in a perpetual state of panic. How can anyone live like that? We tell ourselves these lies so that we can face living. Not just the parents of Autistic children but everyone.

To Quote Men in Black: There’s always an alien battle cruiser, or a Corellian death ray, or an intergalactic plague intended to wipe out life on this miserable little planet. The only way these people can get on with their happy lives is that they DO NOT KNOW ABOUT IT!

So in the end the question comes up: Do I lie? The answer is: Only when it is the truth.

Transitions into a Quieter Life.

As the leaves start to show more yellow than green and the weather turns mild, people start to say, “It is time to get back to the old grind.”img_8433 They are talking about school. I understand the statement, but I never felt that getting back into the routines of school were a grind.  For us it is the opposite. I look forward to the autumn like a cold glass of water after being lost in the desert for three months.

Autism can make summer the hardest time of the year.

Most kids with Autism thrive on routine. They feel safe in a predictable world. Summer strips away the predictability and leaves chaos in its wake.

Summer is just a season, but people treat it like its some sort of free pass from prison. Perhaps that is true for some. Kids are out of school and people take vacations, go camping, and “really live”.  I sometimes wish that we could have the freedom to go on vacations, or go to the swimming pool, or let my kiddo ride his bike around the neighborhood just like all the other kids, but Autism is in our lives to stay. Structure, supervision and routine are the foundations of our existence.

We try every year to keep to some kind of schedule during the summer months. Getting up at the same time, eating at the same time, doing some educational stuff like worksheets and having recess all on a schedule, but it is so easy to fall off the routine. We have no bells or classrooms, we have no teachers or other kids. We only have mom. Anything can throw off the routine, an unplanned trip, a doctor’s appointment, or even the weather. Even the long hours of summer work against us making bedtimes a fight because it is still light until almost 11 pm.

I struggle every year to keep us on track. I start out so optimistic but day in and day out being the only one here makes it hard to keep up the pace. It’s 24 hour a day vigilance. It’s exhausting and I lose my way.

img_8432So as the leaves change, I feel like my path is clear again. School has started. That means schedules and schedules mean calm. Everything settles into its proper place. I find myself relaxing and not just because of school.

I feel like summer is noisy and crazy. When fall comes, the world quiets. The busy buzzing in the air that come with summer falls away. The sounds of lawn mowers fade. Even the wind isn’t as loud. And I find myself slowing down.

I found myself sitting on a stool just inside my door for about 15 minutes just watching this bird sitting on my front railing. That is not something that happens in summer. The bird would have flown away as soon as it saw me.

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I feel like I begin to notice my surroundings again. We went to the football game  Friday night and between plays I looked up and was awed  at the beautiful color of the sky.img_8437

How often during summer do we notice things like the sky? Oh, people notice it is clear or cloudy, but do we really see it? Maybe some people do but I feel like I never have the time. I’m so busy trying to deal with the chaos of summer that I miss the beauty of it.

I’m so relieved that summer is ending and autumn is here. I feel like I can breath again. My head is clearing and I feel like I can handle my life again. I feel like I have transitioned into a quieter life.

Best Big Sister Ever

Life with Autism isn’t easy and sometimes I think it is harder on the siblings than on the parents. Because the child with autism needs a lot more attention, siblings often feel like they are ignored or neglected.It’s never what we as parents intend, but it happens none the less.

As parents we love our children unconditionally, equally, and without bias. But enough time is always an issue when one child has to be watched more than the other. I am often put into a position where I have to choose. For example, volunteering at school during games and things to help raise funds for her Close-up trip. I want to be there and help out but I can’t be there for my daughter because I have no one to watch my son and it breaks my heart. Although she doesn’t resent the extra time her brother needs (well maybe a little) and she is fiercely protective of him, I know it still hurts her and she doesn’t deserve that.

That’s why I want to acknowledge her love and sacrifices.

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So let me say a little something about my daughter. She just turned 17 and is a junior in high school. Somehow even though I feel like I’ve failed her, I ended up with the best daughter in the world.  She’s intelligent and hard working, almost to a fault. She is driven and conscientious. She’s at the top of her class, straight A student, involved in more extra curricular activities than anyone should be, has a full time job as a barista, and still has time to be the best big sister ever.

She loves to take selfies with her brother.

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And even when she is pressed for time to get her homework done she takes the time to play with him and help him learn. This day was volleyball in the front yard.
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She makes it so easy for everyone to relate to her brother.  The other night at the volleyball game she took him down into the student section with her to help cheer our girls. At first a lot of her friends weren’t sure how to deal with him being there. She leads by example including him in everything just like any normal kid would be. Pretty soon the others were helping him cheer and doing high fives with him.

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 She is all that a sibling should be. Don’t get me wrong they still squabble like any normal siblings but she’s always there as an example, guardian, and guide to her little brother. I couldn’t ask for a better daughter or sister for my son. I am so proud of her.

If you are bored…

Said every mom at some point in the summer months. Kids on vacation from school means kids that get bored. Often more chores are heaped on or they are sent out to play so they don’t make their parents psychotic. But sometimes we turn to crafts…

A long time ago we found these at the dollar store. Discovery Digging In. A small block of supposed sandstone hiding a treasure for your intrepid young archaeologist to discover!

I thought this would be great for my autistic son, because he loves digging for treasure.

Ummm, yeah, right.
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After working away for a while and asking for help repeatedly because motor skills and strength were not cooperating, we got a bit of the treasure uncovered.

We were both covered in the most powdery nasty substance known to man and that I’m sure was designed to suck all the moisture out of any bit of skin it touches. He got bored and started playing with other toys.

After 20 minutes of, “Are you going to finish digging for treasure?”

“Yeah, mom, help!” Over and over again. I finally gave in and finished breaking the little toy loose.

All that hoopla for this tiny little warrior.

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So basically, the lesson learned is…if they are bored don’t give them something that will make more work for you because they’ll still get bored and you and up with a mess on  your hands.

Ah well, I tried.

Traveling with an Autistic Child

People are always saying to me that I should take my son places and get out and see some of the fun stuff around us. Well, that requires travel.

Traveling with children is hard. Traveling with an autistic child is really, really hard.

First you have the packing.

IMG_8194Whatever you try to pack or organize it gets a little askew as they try to help. Sometime you even end up missing things because you thought you packed them and he moved them when he was trying to be helpful. Then there is all the extra stuff you have to take along because he can’t sleep at night without it. Like his pillow, his stuffed animals and the little plastic Smee characters (from Peter Pan) that he has to hold while falling asleep, there is also the music he has to listen to all night and the book you read to him until he sleeps. Thinking about it now I should have added his night light but, ah well.   That’s just the list for bedtime.

There’s also his tablet, the ear protection in case it thunders (he’s terrified of storms), the extra pairs of clothes in case of accidents and snack in case of anger episodes to get him back on track.  Hats, sunscreen, toys, and all the regular stuff you pack for a trip like clothes and toiletries.

And that’s just his stuff.

By the time you are ready to leave half the house is packed and I packed sparingly.

But it isn’t just the bring of extra stuff that makes travel with an autistic child hard. It’s the upset to the routine. Most kids that I know that are on the spectrum need routine. Mine certainly does.

For example if you are driving then you need to stop for food at the right times. If you go to long or eat too soon after the last time they get grumpy. Sitting in the care too long makes them grumpy, they need to move around a lot more than the seat belt will allow. If they get grumpy there is the possibility of a meltdown and that is not easy to handle when you are driving down the interstate. Mine will kick the windows or grab my shirt and try to yank me into the back seat. There has also been instances of kicking and pinching. I even got hit in the head with a half-full water bottle once while I was driving. Not the best thing at high speeds.

Another issue is the strangeness of where you stop. I have taken to driving straight through to my mom’s house from Montana. It’s about a 15 hour trip. It’s exhausting and it makes him grumpy but stopping overnight in a hotel is even worse. The last time we were in a hotel he freaked out completely. He was scared of the lights outside the window and spent the whole night trying to get out the door. Well obviously I couldn’t just let him leave. Where could he go? So we fought all night. He screamed and cried. By morning my arms and neck were scratched and bloody and covered in bruises. I took to sitting in front of the door so he couldn’t open it. When he finally did sleep it was about two hours before we had to leave again. So now we drive straight through.

Then once you get where you are going you have to get him settled and that often takes a long time. Luckily we only go to Grandma’s so he’s familiar with it. After trying to keep the routine while you are there, which can get really difficult, you must then make the trek back home again which involves going through all that craziness again. By the time you get home you want to hide and cry but you have to keep going and get unpacked and settled and try to force your reality into some sort of normality.

I know that he needs to be out and see the world but sometimes it is way to hard when you are alone. There have been times when we have gone as a family. My daughter and sometimes my husband are along and that makes it a little easier. Ish. When my daughter is in the back and he is having a meltdown it becomes dangerous for her because he will attack whomever he can reach. So I usually take the seat beside him so he can take it out on me and not my daughter. It is not an easy thing to have to protect one child from the other like that but there isn’t much choice when his is in an angry trance. When he calms down he snaps out of it and he is very apologetic but the damage is done. Better me than my daughter.

So if you see me and ask why I don’t take him places in the summer…it’s just better that way.