Month: July 2021

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Autism and the Art of Taking a Trip

Autism and the Art of Taking a Trip

Casey has been asking for months to go to a water park beside the zoo and I kept telling her no. Honestly, the park is big, it’s open and it’s terrifying to think about taking them there.

The reality is, I would need at least three other adults to go with us. Rob likes to explore, but once he finds a place that will continually dump water on his head, he pretty much stays there. But, with autism, you never know, so two adults with him at all times.

Casey wants to try everything. It doesn’t matter if it scares her to death – if it is there, she has to try. While I’m so proud of her for going outside her comfort zone, that also presents challenges. For water slides, someone has to go with her to the top and someone at the bottom. No exceptions. When Mandy and I took them to Sesame Place two years ago, I was right behind Casey on slide and in that ten seconds, she disappeared.

It seemed like hours before we found her – in line to ride again- but really, it was only a few minutes. My head knew she was right there somewhere, but my heart was pounding. And, Mandy needed to stay near Rob, so it made looking for Casey even harder.

But, it’s hard to explain to Casey why that water park is not in her future. I’ve told her that’s it too big and not safe, but she says “adult!” Yes, Casey, I know you are an adult, but… How do you explain she is a child in an adult body? How do you explain that you are scared to death someone will hurt her? Neither Casey or Rob can comprehend that.

So, as a compromise, we went to a Great Wolf Lodge near Lake Erie. We could kill two birds with one stone – her water park and his love of the lake. They were both excited, but if you’ve ever taken a trip with autism, you know the planning is crazy.

I looked at pictures and reviews of the lodge. I requested an early check in with a room on the first floor at the end of the hall. I thought of every thing they might need to be safe, happy and able to sleep.

I let them pack blankets – one for her, four for him. And their pillows. And iPads. Snacks. Breakfast stuff. Big Bird was the lucky one chosen to go with us. It’s funny watching them choose clothes. I have to talk her into taking any extra ones. Rob? He packed for more than a week – every red shirt he owned, plus a few more.

I thought and over-thought every detail. Went over every possible thing that might happen and tried to prepare. And thought, without autism, we would have had a duffel bag, cooler and bag of snacks instead of a trunk full of stuff. I worried about the staff at the park. Would they be patient? Would they be helpful? Would they be kind? (For the most part, the answer is yes to all… But they could use a little training with special needs).

We did have a few bumps, but mostly, it was a great trip that they both enjoyed. It took a lot of planning, but it was definitely worth it. Traveling with autism is never easy, but I have learned that many places are ready and willing to accommodate your needs – you just have to ask! If somewhere isn’t willing, then go somewhere else. Special needs families don’t need to hide or be ashamed!

Let the world see and hear your family. Every time you do, you encourage other families to do the same and you open the eyes of people around you. Only good can come from that! 😊

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Celebrating the Little, Big Steps in Autism

Celebrating the Little, Big Steps in Autism

It’s been a week of so many little, big steps for Casey and Rob. I say “little, big” because to most people, these steps forward are not a big deal. To an autism family, little steps sometimes take years to see – they are big, huge, amazing steps!

One of the funniest steps forward is seeing Casey use emotions Thursday evening to try and get what she wanted. When I picked them up, she was happy and giggling. A little while later, she was crying and telling me she didn’t want to go to their day hab the next day.

Nothing I asked could help me understand why she so badly didn’t want to go. I messaged staff and was told she had been happy and engaged all day – nothing had happened. Casey kept sniffling with teary eyes saying “No Hopewell tomorrow.”

I finally stopped asking her questions and hoped she would calm down enough to tell me. And she did.

She looked at my calendar, saw I had an appointment Friday and she wanted to go to Hobby Lobby, not Hopewell. 😳 I was so happy she was finally able to tell me – and use the right emotion (sad)! I told her I wasn’t going to that store and she happily went to Hopewell Friday.

Saturday was a car show that Casey had been reminding me about for weeks. She was so excited to go, but she was able to understand she needed to stay with Grandma and Grandpa before we went. She even stayed happy and calm when that visit stretched longer than I planned.

As we left their house, Rob started his “on the way home” phrase. He says it 13 times whenever we get in the car to come home. (He only does this with me – for everyone else, he stays quiet until he gets home and then starts repeating it… 13 times!) We got to the car show before he was finished and he was able to stop! This is huge! His OCD requires 13 repetitions of his phrase and he controlled it.

He quietly finished his 13 times as we walked back to the car after the show. 😊

The car show was on Main Street and we were able to walk around looking at cars without the fear that one or the other would take off. Casey even walked about half a block by herself to say hi to friends of ours! Mandy, Cory and I were all watching to see if she would go to them and stop and she did!

The look on Lyn’s face when she saw Casey by herself was priceless! I walked over to them and gave Casey a big hug and told her how proud I was. She looked at me like I was nuts, of course. 😊

And today… We went swimming. But even better than that, all three of us played ball together for a long time in the pool. And when I got out, Casey and Rob played together! I sat on the edge of the pool and thought about the years when I couldn’t take them to a public pool without a lot of help. Look at them now!

And when it was time to go, they got out of the pool without a fuss. Again… Not too many years ago, that wouldn’t have happened. I would have been telling them 20 minutes left. 15 minutes left. 10 minutes… And so on… And probably still would have had issues.

So…. Brag about everything your child does. Who cares if it’s a skill they should have mastered years before? Brag about it to everyone! The people who truly care about your child will be as excited as you… And the ones who aren’t excited… Maybe they don’t matter as much.

Because, just like everyone else, your child with autism knows when you are proud and happy and excited. They may not be able to communicate with you, but they know and hearing you brag to everyone about a new skill they have learned is just as important to them as it is to a “typical” child. Shout from the rooftops! And be sure to let me know – I’ll spread the word and we’ll all cheer for your child! 🙂

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Autism and Abstract Thinking

Autism and Abstract Thinking

Look at the picture with this post.  What is it?  A dog?  A puppy?  An animal?  A pet? Blue? (That’s her name. 😊)  Any of those guesses are right.

Have you ever noticed how many abstract thoughts you have every day?  How many generalized ideas that you don’t really think about?  Now consider your person with autism who struggles constantly with very literal thinking.  Their thoughts are often black and white – concrete ideas. 

Can you imagine being told that the four legged thing in your home is a dog, a pet, an animal and a Labrador retriever?  For us “typical” people, that’s all true, but if you think that everything has one label, it’s confusing and makes no sense.

Casey really struggled with labels when she was in elementary school.  She simply couldn’t understand that the word “animal” meant so many things.  Or that the word “dog” could be our black lab and Grandma’s furry pet.  Cows could be black or white or brown.  Trees could be maple or oak or pine.  They all looked so different, but had the same name.  She would get angry about the different labels for the same things. 

She was in junior high before she started realizing it was okay for objects or people to have different names.  Imagine her shock to discover her Mommy Jen was also Uncle Jeff’s sister (Jenny), and Grandma and Grandpa’s daughter!  I was a mommy, a daughter, a sister, an aunt, a cousin, a niece, a granddaughter, a friend.  It was too much for Casey to understand.  When she was young, she knew Mandy was her sister and Rob was her brother, but she wouldn’t call herself a sister, because that was Mandy!

Imagine you are told you are going to McDonald’s, only to discover you didn’t go where you thought!  There are thousands of McDonald’s, and they are similar, but so different.  How confused would you be?  And remember, while you are trying to understand this, people are constantly trying to get you to label items and tell them what you want!

But – how can you label something with so many names?  You are struggling to get words to come out, already, and now you don’t know what word to use.  You are thirsty.  Do you say cup? Drink? Water? Juice? Thirsty? The color of your favorite cup? Because every one of those words will get you a drink.  As an adult, if you were in this position, how frustrated would you be?

Rob seemed to grasp generalizing a little more than Casey did.  He knew dogs and cats were both animals, but he didn’t care.  He understood people had different names.  (Casey still struggles when people have the same name.  She gives them an extra name, such as “Our Tracie” and “Other Tracy.”  She doesn’t mean anything by it – it’s just her way of separating two people. 😊)

When you are trying to help your child learn words, consistently use one word for each item. Say “cup” every time, not mug or glass.  Say “shoes” not sneakers or boots or flip flops.  All of that can come after your child understands when you say shoe, he needs to put something on his foot.

We used PEC cards with Casey for a while and she learned quickly, but then I realized she thought of a drawing when she said cup and not an actual cup.  We switched to using actual pictures of items versus the print out designs and this helped so much.

I made books for Casey and Rob with pictures of people, places and common items.  They could carry their books (I had one for home and school) and could point to what they needed.

Abstract and general pictures worked a little, but the actual photos were better.  They didn’t have to wonder if the pencil drawing of a book meant the same as an actual book.  Don’t assume your person with autism can generalize like you can.  Remember how literal they think. There are no shades of grey.

Once your child can communicate her needs, you can decide to work on more generalization, if you see the need.  Honestly, I don’t push that for Casey or Rob. It’s not a life skill they need.  If they get confused, I explain and we go on.

Always remember when you are talking to a person with autism to use short, clear words and give them plenty of time to process what you said before you repeat it. Keep it simple and short and say exactly what you mean. Life will be so much easier for you and your child when you learn to do this!