Autism and Little Tiny Steps Forward

Autism and Little Tiny Steps Forward

Yesterday, I heard about a Fountain of Dogs that a city not far from us has and decided to take Casey and Rob today. Casey had already asked about going for a long hike and I knew it was just too hot, so we went to the fountain instead. I knew she would like it just because we went somewhere and I thought he would because it’s water.

It is just as it’s described. A fountain with dogs in and around it – all spraying water at the center where a giant golden bone is displayed. She was laughing as soon as she saw it. He walked quietly to it and just stood there. I could almost see his shoulders relax as he watched the water sprays. Soon, he was sitting on the edge. He didn’t smile. He didn’t touch the water. He just watched. And his body became even more relaxed. When a bench in the shade became available, he moved to it and again, he was the picture of complete relaxation.

Casey, of course, had to get her picture taken with several dogs and had to try the drinking fountains (they were off because of the virus, I am assuming). She had to walk all the way around the fountain. I sat on a bench near Rob and enjoyed the fountain. As I watched them, though, it occurred to me that it wasn’t too long ago a trip like this would not have been a good idea.

For one thing, keeping Rob out of water has never been easy. He is drawn to it (aren’t many of our kids??) and can’t resist putting his hands in. He did dip his fingers this morning, but he made no effort to jump in the fountain. When he was little, I would have been sitting on him to keep him out – and Casey, too, probably. Visiting the fountain would have been an epic failure.

And – I let Casey walk around by herself. The fountain is on the corner of two busy streets (but, it’s Sunday, so not as much traffic) and even a few years ago, I wouldn’t have let her get that far from me – especially near streets. She has a history of bolting when she sees something she wants. But, today, I sat in the shade and watched her wander around and check out all of the dogs. She got right down beside a few of them and looked right in their eyes. (She even sat on a few!) Rob watched the water and never said a word.

As I sat there, I wished that the other people who were there had a clue just how huge this was for us. I wished someone else could see them enjoying something so simple – and that I was enjoying it, too. I wasn’t trying to keep her from bumping into people (she really doesn’t watch where she is going!). I wasn’t fighting to keep him out of the water. I wasn’t trying to keep him quiet. I was sitting – just like the other parents. It’s an odd feeling.

I thought of the many, many times we had to leave somewhere before everyone was ready because of autism. Whether it was a sensory overload or a meltdown from hunger or heat that they couldn’t communicate to me. Maybe it was just too much for me to keep fighting to keep one safe while the other wanted to run. Maybe I just didn’t want to deal with the stares. There have been lots of reasons why we didn’t try (or didn’t stay long!). But today – all of those little, tiny steps forward were obvious.

And that’s one thing about autism. There are always steps forward. They may be incredibly small, but they are there. Maybe your son hung up his coat or your daughter took her dishes to the sink. Maybe someone learned to put on their socks or grab their backpack as they left the house. Everything that so many other parents take for granted – we celebrate! Because, we all know, for every step forward, there will be one back. Sometimes, it feels like you are just stuck in the same place – no progress, no improvements, no reason to celebrate. I’ve felt that way – many times.

The funny thing is, I remember one particular rough time. It seemed like neither was making any progress – that we had been working on the same darn things forever and a day and weren’t getting anywhere. I was tired – fed up – discouraged – done. I just didn’t have the energy to care about those baby steps anymore. But, my aunt and uncle were visiting from Minnesota and we went to my mom and dad’s house to see them. (Honestly, I was ready to say “nope, ain’t coming” but I really missed my aunt and uncle, so I dragged the kids out of our house.) Anyway, while we were there, Rob was upstairs doing Rob stuff and Casey was sitting in the chair, smiling.

I was flopped on the couch next to my aunt when she said she just couldn’t believe how different they were from when she had seen them several months ago. I remember just looking at her wondering what she meant. She went on and on about the differences – how calm she was – how she was willing to talk a little more – how he looked at her when my aunt said hi to him – how quiet he was upstairs. And I was ashamed of myself. I couldn’t see the forest for the trees, apparently. Once someone else pointed out their progress, I could easily see it. Sometimes, it takes an outsider to show us just how much progress our kids make – every day!

When you are living the slow, steady path with all of the setbacks we see, it’s hard to see that your child is going forward! It’s happened to me, many times. You get so blinded by the long lists of what they can’t or won’t do, you forget there is a long list of what they can do! (Personally, this is one reason I hated IEP meetings so much. They were always about what Casey and Rob couldn’t do – not what they could! I thank God that their teachers always started with the list of awesome things they could do to start off. I wish all teachers could do that!) You forget that last week, he couldn’t make his bed or she couldn’t rinse her hair.

You forget that you couldn’t let go of their hands for fear they would take off. You forget that they can shower on their own and fold their clothes. You forget that they say “Hi” and name the person they are talking to. You forget that they stand for the flag and the National Anthem. You are too busy remembering he can’t tie his shoes and she can’t count money.

I encourage each of you to stop thinking about the can’ts for a few minutes and look how far your child has come. Enjoy every single one of those baby steps forward – shout it from the rooftops! Brag on Facebook! Send out texts – let everyone know about the steps forward! Those little steps are just as important as the big ones – and acknowledging those steps will keep you going during the rougher times.

Maybe one day, you will be able to sit by a fountain as your daughter explores the area and your son quietly relaxes in the shade. Nothing is impossible! 🙂

Autism and Black and White Thinking – No Gray Areas

Autism and Black and White Thinking – No Gray Areas

Anyone who has spent time with a person with autism knows that their minds tend to work one way – very literal. They believe what you say – exactly as you say it. I still manage to say things that everyone around me would understand but that Casey and Rob take exactly as I say it.

Last week, when I washed the kids’ sheets, Rob put his on the bed and carefully put his pillows in his pillowcases. I asked Casey if she needed help or if hers were on her bed. “On bed.” So I asked if she was ready for bed. “Yes.” Two days later, I discover that her sheets are indeed on the bed – but mixed up in a pile of blankets, not actually on her bed. I pointed to them and asked why she didn’t put them on her bed. She looks at me like I’m crazy and says, “On bed.” Okay, true, they are on the bed. And I realized again that while I did say what I meant, I didn’t actually mean what I said.

Yesterday, Mandy and I were finally able to find time to take Casey and Rob to a state park swimming – with 5 dogs. Obviously, all of us would be a tight fit in one car so we split up. She was driving behind us. We had only been driving a few miles when I noticed that Rob was getting worked up. He was in the backseat and beginning to rock a little faster than is usual for him. I watched him a few minutes to see if he would calm down, but he only got more upset. When I finally asked him what he needed – Mandy! I had told them Mandy was going “with” us – and we left her at our house! She wasn’t in the car, too, so she wasn’t with us. He calmed down when I told him we couldn’t all fit and that Mandy was driving behind us. But he did have to keep turning around to check on her! 🙂

Or how about the time I told a much younger Casey to “hold her pants on” (meaning – wait a minute) only to turn around and see her holding onto the belt loops of her jeans, probably wondering the whole time why holding her pants would get her juice poured faster.

Or when I said Rob had a frog in his throat? Or that he was a little hoarse? It’s raining cats and dogs (that one really freaked Casey out!) Or asked Casey to get her clothes off of her chair (meaning – put them away!) – so she put them on the floor. And the list could go on for miles. And all I can do is laugh, because they do exactly as I tell them. There is no room for anything other than literal terms.

They don’t lie. If they don’t like something, they tell me. I made a chicken dip once and asked Casey if she liked it. “yes.” I asked if it was as good as Mandy’s. “No.” She saw no reason not to tell me – or any reason as to why Mandy’s is better. Never ask a person with autism anything that you don’t want the truth from. I actually like taking Casey with me to try on new outfits – she will always voice her opinion. She may not understand general questions, but I can say, “Does this shirt look pretty on Mommy?” and she will tell me. 🙂

On a side note – never ask if you are looking fat, tired, dirty or anything else negative, if you are hoping for a bump in your self-confidence. If you look it, they will tell you. And that’s on no one but you. 🙂

I would say that learning to be careful what you say is one of the hardest lessons for an autism parent. We all grow up with family sayings and we use them all the time. But people with autism have a hard time understanding that you don’t always mean exactly what you say – especially when you are constantly telling them they need to communicate so you can help them. It’s a difficult position to be in.

It’s hard to be always thinking about what you are saying and how to say it clearly for people with autism. Some days, Casey and Rob “get it” on the first try and other days, I might as well be talking to a wall. Either I’m not being clear enough or they just don’t care and see no reason to continue listening. (And, really, isn’t that an awesome gift? To just be able to not care and not worry that you are hurting someone’s feelings by not listening? 🙂 ) While I have worked with them since they were little to never be mean or rude, some things are just a part of their autism and I will never be able to change that. Honestly, I don’t want to – I want them to keep their independent thinking and their ability to shut out things they don’t want to hear.

Communication is often one of the hardest parts of living with autism. You have to learn to speak like an adult to one person with autism and be more childlike with another, but not so childlike that they feel you are talking “down” to them. I have a hard time with Casey and Rob at times. I find myself talking to them as kids instead of the adults they are. So I’ve learned to talk like an adult with a child’s enthusiasm and short, clear sentences. Neither of them like long rambling directions or stories. Short and to the point – details aren’t needed unless they ask.

Trust me – no matter how careful you are with what you say, you will get it wrong at some point. You will say “head over heels” or “pull someone’s leg” or “cost an arm and a leg” and you will completely freak out your child with autism. “It’s a piece of cake” will get a glare when there is obviously no cake. (Yep – I’ve said that a time or two. Casey is never pleased.)

So not only will you have to learn an entire new language of medical, educational and government terms (IEP, ISP, OT, PT, MFE, and on and on and on) you will have to unlearn a lifetime of things that you have said often without even thinking. (I’ve also noticed that every part of the country has it’s own sayings!) Or maybe not unlearn it – just learn to be careful when you say it. Sometimes, the results are funny, like Casey trying to pry Rob’s mouth open to see the frog. Other times, it just makes a bad situation worse.

I know I’ve had my share of laughs over my choices of words. I know I still (after 32 years of living with autism!) say things without thinking and then wonder why in the world the kids didn’t do as I asked. (Because I didn’t actually say what I meant, of course!) It makes life interesting some days and very frustrating others, but as long as we can eventually laugh about it, who cares?

Autism and Mom Guilt

Autism and Mom Guilt
Autism and Mom Guilt

Later today, we finally be celebrating my niece’s high school graduation.  The party is at her grandparent’s house.  I’m feeling so guilty because I’m not taking Rob.

He is welcome, of course, and no one would mind his noises.  But, we were there the other night and he “claimed” a spot in their living room as his safe place.  Bill and Reeva don’t care, as they love him.  But – I can’t be sure he won’t go looking for things to rip up, so I will be constantly running in to check on him.  And I just don’t want to.

Yeah, I know that makes me sound terrible.  Tracie is going to help keep an eye on them, but I don’t want her stuck in the house with Rob.  She is family and should be able to relax and visit, too.  And, the weather is supposed to be stormy off and on all day.  And, I am just not feeling very patient today.  I just want to talk to people.  Selfish?  Yeah, but that’s how I feel.

Last night, I found out Mandy’s plans had changed for the day and she told me to ask him if he would rather go to her house.  Truthfully, I know he would much rather do that.  She is even going to take him out for supper somewhere.  He will be happier.  I will be happier.  Casey will be happier.

I still feel guilty.

I am a firm believer in people with autism pushing their limits.  They need to experience life and all the joy that comes with it.  They need love and support to learn about the world.  I think I do a pretty good job of pushing them.

Today, I just don’t want to.

Today, I want to take pictures of Lacey and her party guests.  I want to sit down and actually eat a meal.  I’m not sure when I did that last.  Probably lunch with Tracie on Thursday.  I want to laugh with my brother and talk to people.

I want to watch Casey have fun.  I want to wonder what she is thinking as she watches other people.  (Though, honestly, much of what she is thinking is – I’ll sneak another cookie when mom isn’t looking.  😊  Her mom isn’t as blind as she thinks!)  I want to help with anything Lacey needs or just sit and watch clouds go by.

My head knows I’m doing the right thing by taking him to Mandy’s.  He will love having her all to himself and she will spoil him.  He doesn’t really want to go to the party, anyway.

But… My heart is worried that he’ll think he isn’t wanted or welcome there.  My heart aches that he ever feel that way.  As so the war between head and heart rages.  I hate it.

I wish he was able to say he doesn’t want to go – or that he does!  It’s silly, of course, as I know Rob.  A choice between this party and Mandy is a no brainer – he will always pick her.  I feel guilty because I’m not asking him. I’m just doing what I think is best.  As a mom, that’s what I do.

But, he’s an adult and should be given choices.  And yeah, I know – he is a child in many ways and still needs guidance.  I just always try to give them choices whenever is possible.

I hate mom (or dad!) guilt.

I can hear Mandy’s voice in my head – get over it, mom.  He doesn’t want to go to the party.  😊  So that’s my plan. I still feel guilty not asking him what he wants to do.

But one thing I have learned over 30 years of living with autism… Sometimes, you gotta do what’s best for you and your other kids.  Today – that means Rob will be going to Mandy’s to be spoiled while Casey and I go celebrate Lacey.

It’s hard to do, but please – throw away the guilt and do what’s best for you sometimes.  You deserve it – you need it.

Why We Need to Think Like a Person with Autism

Over the last several weeks, our world seems to be spinning out of control. People are protesting, rioting, arguing about masks, politics… it’s an endless stream of negativity. Honestly, I pay little attention to it – we have enough to handle in our own home with adding the drama of the outside world, too. But – I can’t help thinking that everyone would be happier if they started acting and thinking like a person with autism.

Have you ever seen a person with autism dislike someone because of the clothes they wore or how they looked? Nope. The only time I have ever heard either of my kids mention a black person was at the drive in. We were parked by a van with several teenagers of different races. They were loud and having fun and not bothering us at all. But Casey – oh man Casey…. she started stomping her feet and getting herself worked up, chanting “Black man! Black man!” I was trying to quiet her before she upset the teenagers and not having much luck.

But – I was also kind of proud of her for finally noticing someone different than herself. Until I realized she wasn’t talking about the teenagers. She was getting tired of waiting for the movie “Men in Black” to start. 🙂 (for some reason, she loves the first one of those movies!) Chanting “Black man!” was her way of asking for the movie to start!

They don’t hold it against someone if their clothes aren’t perfect. They don’t care about the car you drive. They don’t care if you have a million dollars or three quarters. If you are kind to them, Casey and Rob will accept you just the way you are – black, red, older, younger, police officer, teacher, aide – makes no difference. Just be kind to them. If you aren’t, they will remember and they will have little to do with you after that. It won’t have anything to do with how you look – it will be you, personally.

How many of us can honestly say that we have never judged someone at first site? Maybe they were dirty or they had ripped clothes. Maybe they drove a fancy car or flashed around a lot of money. Maybe they just “looked” like bad news. We have all done it – you can’t lie. I know I have. And I know that I try to follow Casey and Rob’s lead in accepting people for how they treat me and the kids instead of how they may look. It’s not always easy, but I do it. Because I would hate for people to judge me on how I look running in to a store when I’m in the middle of a project, dressed in old clothes and ran out of something to finish the project. People probably change direction when they see me coming. 🙂

Casey and Rob don’t feel the need to try to impress anyone, either. Casey simply doesn’t care what others think. Rob does, but he won’t try to make someone like him. They don’t need the “right” clothes. They don’t care about expensive vacations. They care about being with Mandy and Cory. They care about spending time with Grandma and Grandpa and Uncle Jeff and Tracie. They care about wading in a creek or watching a waterfall. They care about soft t-shirts and cute socks. They care about doing crafts and listening to music. They care about sparklers and birthdays and Easter eggs. Their presents could be nothing but socks and playing cards and they would both be happy.

They don’t force themselves to eat things they don’t like. They don’t try to change themselves to fit someone else’s image of who they should be. Their self-confidence is inspiring – and has truly helped to build mine, too. I’ve learned to like myself more – to remember that I’m okay just the way I am and I don’t need anyone’s approval of the choices I make. Try it sometime – it’s a very freeing feeling!

I want people to look at the world through a person with autism’s eyes. I want people to see the good in others, the beauty in sparklers, the peacefulness of a waterfall. I want them to see the joy in Elmo, the excitement of a milkshake, the love in a simple hug. I want the world to slow down and see what’s really important.

Will it happen? I doubt it. People are too self-absorbed most of the time. And that’s funny, because most people with autism are completely self-absorbed – the world is simply all about what makes them happy. The difference is – what makes them happy are simple things in life. Family, friends, French fries, walks, frosty’s, swinging on the porch swing, a new coloring book, a new sign, a new pack of cards, a cookie before bed. Simple pleasures in life that so many people miss because they are too worried about stuff that doesn’t matter.

This week, I challenge you to watch your person with autism and try to be like them. Slow down. Move into their world, as much as they will allow. Look at the world through their eyes and let the negativity go. It’s simply not worth it.