Good sister

Oh the hard days. We all have them. 

My 10 year old daughter gives me her share of challenges lately. We're definitely in the beginnings of that tween phase, where we get a lot of new teenage behavior, plus the more childish behaviors are still there. It's like the best (worst?) of both worlds. 

There are days when I just don't know what to do with her. 

But just when I think I'm doing it all wrong with her, she comes up with things like this.

Her twin brother was having a really hard day. Autism gives you that sometimes. We were having one of those days with just lots of overwhelm and meltdowns.

For some reason he got it in his head that he should be getting mail. He checked the mail box and got very upset that there was nothing for him. So he slammed the box back shut and came in without the mail. From another room his sister apparently heard this. She came out and announced that she was going to get the mail, and I could tell she seemed a little sneaky.

When she came back in with the stack of mail she said, "Danny, there actually IS something in the mail for you". She pretended to thumb through the stack of mail, and then handed him an envelope. 

The envelope contained this: 


Simple to-do chart

Charts and lists are what makes our world go round here. Nothing seems to get done if it's not written down.

The kids have their daily checklists, which work great most of the time.

But with autism comes processing challenges. Sometimes when his brain is overwhelmed he has a hard time processing more than one instruction at a time. Just looking at a long list of things to do can cause him toe shut down.

So this is a very simple little tool I use occasionally to help him. Instead of everything on one piece of paper, I write them on individual post-it notes. Then I can give him one note at a time and send him off to do that thing. He brings the note back to me when it's done, and I give him the next one. 


Sometimes I Forget

I originally started writing these posts under a separate blog - one I called "Another Normal Day". I gave it that name because our daily life really does seem normal to me.  Most of the time I don't even think about the craziness of it.  It's usually only when other people point it out to me that I realize, yeah, this is kind of a lot.

Raising four kids, two sets of twins, and one with autism, is kind of a lot. copyright lisa marsh 2018

My son seems normal to me.  I've known him since the beginning of ever. He is the only son I've ever had, so daily life with him is normal.  

And so I forget about the autism.  We just go about our days.  His little quirks and needs are just part of our life. It's the way we've always done. 

It's when we go out that it's put in my face.  Not because he calls attention to himself.  Not because of the reactions of strangers. He's pretty mellow in public places, so strangers really don't notice him.

But I notice.  I notice that he's not like the other 'normal' kids. 

When we see other kids playing on a playground and roughhousing, kicking a soccer ball around, or playing baseball.

When we are at the park, or at a museum, or at school, and everyone else is interested and active, but he sits away from the group, by himself, head down, headphones covering his ears.

When I see how other boys play and interact with each other and the world around them. 

When we go to a friend's house and he is more interested in the toddler's light up toys than the 9 year old boy's legos or swords or other more typical older boy toys. 

That's when I notice that our world is not like theirs.

You have no idea. copyright lisa marsh 2018

People look at my boy, they see him at school, they seem him out and about, and I know what they're thinking.

It's not the same as what people might think about a lot of kids on the spectrum. I read articles and posts about how other mothers have to deal with the meltdown and tantrums in public and people staring. But I get sort of the opposite. My kid is great in public.

They're thinking that they don't see an autistic kid.

They're thinking, he seems fine, he looks fine, he's getting along just fine, so why the big deal? Why does he need extra attention? Why does he need extra help? Why should we be making extra accomodations for him in the classroom? Why should he be allowed extra time to do homework, or have less homework? Why does he need breaks during the day? Why should he be listening to music in his headphones during dinner at a restaurant?

I see it.

People think I'm being overprotective. People think I'm being a "helicopter mom". People think I need to step back and let him work things out just like every other kid. People think he should be treated like every other kid, held to the same standards as every other kid, have the same expectations as every other kid. People think I'm just letting him "get away" with misbehaving. 

But he's not like every other kid. 

When you see a child like him in public, who appears to be doing so great, and acting so "normal", you have no idea the amount of effort it takes to get him there. 


Yes, he's doing well (most of the time). Because of all the accomodations, because of the breaks, because I buy him special pencils, because he has his headphones to wear when it gets loud, because he knows his schedule and he can count on the people that he knows are going to be coming in to help him. All of those things you see that you think he doesn't need because he's doing so well - those things are the reason he is doing so well.

And then there are the things you don't see.... the hours spent in meetings and offices and late at night, by me and his special ed teacher and support staff. The agonizing over exactly which goals we are going to focus on, stressing over whether those precious support minutes will be used to help him in math, or reading, or science. Debating about whether he needs someone there in PE, to make sure that he is appropriately included and participating in games. Discussing how we are going to get him to learn to write better, or whether we should just let him type everything. The late nights spent pouring over every word of the IEP, adding up the minutes, understanding how we can help him. He is doing ok because there are so many of us spending so much time behind the scenes to make sure he has everything he needs in order to have the opportunity to be just as successful as every other kid in the class. 

Yes, he is (finally) sometimes playing on the playground like other kids. Because he has been in physical therapy at least once a week, every week, since he was 9 months old. He didn't just stand up and figure out how to start running and jumping and climbing like all the other kids. He had to be taught how to do all of that. He had to be taught how to climb those steps and that rope ladder. He had to be taught how to go down that slide. He had to be taught how to hold on to that swing. He is playing on the playground like the other kids because of the help he has been getting. But you look at him and think he doesn't need physical help because he's doing fine. 

It's just so exhausting to have to constantly justify to people why he needs support. As if they don't believe that I know what I'm talking about. 

I've been told that I just make a big deal out of all of this because I like the drama. "You're just doing it for the drama!" is what someone I was once close to yelled at me several times one day. I've been told that I was taking advantage of the system by taking special bus service for him. I've been told that he just needs to learn how to control his emotions and behave.  I've been told that he's manipulating me.

I don't complain about parenting him. At least I don't think I do. It can be hard, it can be a lot of work, but it can also be so rewarding. He works so hard, he tries so hard. He inspires me to do better, to try harder, to be better, to deserve him.