Tag: autism acceptance

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Autism Families Don’t Need Pity

Autism Families Don’t Need Pity

I suppose that is a pretty blunt title, but it’s true.

I was at an event with Casey and Rob last week and a lady I barely knew came up to me and wanted to give me a hug and tell me how badly she felt for me. Honestly, I was confused – I had no idea what had happened that made her feel that way. So I asked why she felt sorry for me and she told me because I had Casey and Rob.

Shock. I was in total shock. Why would a near stranger ever think that was an appropriate thing to say? And if she had even a clue about our family, she would never have said that to me. So I said something like – why would you even feel that way? And her answer was again that poor me – I had to live with two people with autism. Lucky for her, she moved on to someone else before I could get over my shock and really tell her how I felt.

The really sad thing is – maybe 10 minutes later, another person walked up to me and said nearly the same thing. I looked over at Casey and Rob, saw they were having fun and asked why she felt pity for us? Because our lives must be so hard…. I’ll admit it. I got angry.

I told her everyone had hard days and our lives were no harder than anyone else’s. Sure, I’d rather not relive some moments in our past, but I’m fairly certain every parent in the world feels that way. There are many times I’ve believed my life was easier than most. When my three were teenagers, I never had to worry about where they were or if they were drinking or driving crazy. I didn’t have to pay outrageous car insurance bills.

I didn’t have to try to run three people in three different directions every single day. I didn’t fight about clothes, make-up or curfew.

Instead, we ate supper together every night. We watched movies and played on the trampoline and in the pool. We enjoy hiking together. We go shopping and out to eat. We do crafts. We danced silly dances in the living room and sat on the porch swing.

Casey and Rob are happy. They get to do things they love to do and be with people they love. They look forward to simple things in life and don’t worry about stuff that truly doesn’t matter. And people feel sorry for us??

I’m not saying that we didn’t have exhausting, miserable days. I’m saying that everyone does and days with autism are no worse than any other family. In some ways, our lives are easier.

It’s all in perspective. Sure, there were days I didn’t like autism much. But a good night of sleep usually took care of that. (Sleep is seriously the best cure for so much!!)

So, I’m asking anyone reading this to think before you speak. You may feel that your comment about feeling sorry for us is comforting, but it’s not. Yes, there are families that eat that pity up, but most of us don’t feel that way. We feel like you are only seeing the autism and not the amazing people our kids are. Instead of offering pity, offer help. Learn about our families and offer to stay with our kids so we can take a nap or run an errand. Learn how strong and close most of our families are and how we pull together to help each other.

We don’t need your pity. We need your acceptance and your help.

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Autism and Family Isolation

Autism and Family Isolation

I’m not telling any of you anything you don’t know. Autism is lonely at times. Lots of times. Not just for the parent who may feel no one can really understand what their life is like, but also as a family. While others may be talking about their wonderful vacations, autism families may just be hoping for a night of sleep or being able to eat out as a family. Some days, autism is just tough.

I remember the isolation. I was so happy for my friends when they got to take their kids places, but …. I’ll admit…. I was jealous at times. And I hated that Mandy was missing out on those same things. They never stayed in a hotel until they were 6, 7 and 10. It simply wasn’t possible. Rob and Casey were unable to sleep at home, let alone a strange place. And their noises were impossible to quiet. It was safer to stay home.

In 2002, we took them to the Smoky Mountains and to the beach in North Carolina. By then, their behaviors were calmer and they were both less likely to dart away. We didn’t stay away from home long, but it was an amazing trip for all of us. We even went back to the Smoky Mountains a few years later. (While they love the beach, the mountains are even more calming to Casey and Rob).

But, in our every day lives, we were isolated. We didn’t go to movies. We didn’t go out to eat very often – and never somewhere that would take long to get our food. When the kids were older, we added a backyard pool and always had friends over. Those were the best times! I still felt lonely, at times, though. It’s hard to describe what our lives were like to others. And, honestly, I didn’t want to try. Back then, I was embarrassed by some parts of autism. Now, I just don’t care. If someone doesn’t like us, they are welcome to stay away. 🙂

The loneliness is a big reason I would encourage each of you to find a support group. I helped organize one in our area many years ago and stopped going for a long time. Last year, we started another one and it’s growing. It feels so good for even experienced parents like me to be around other parents – both experienced and new – and just know that I’m not alone in this walk with autism.

It helps to hear others’ ideas for things to try with Casey and Rob. Sometimes, you can’t see new ideas because you are too close. Outsiders can think more clearly about the situation.

The best part, though, is we plan activities for special needs families. We had a race car visit us and a fire truck came another night. Today, we had a trunk and treat for special needs families. To let Casey and Rob walk around and be themselves is just the most amazing feeling! Everyone knows them and everyone keeps an eye on each other. It’s a wonderful feeling to be part of a huge group that loves and accepts Casey and Rob just as they are.

If there isn’t an autism support group in your area, start one. You can advertise on Facebook or in school newsletters. You may not have a huge turnout, at first, but keep trying. Even if you just become friends with one other autism parent, that’s one more friend for you. The main goal for our group is that no one feels lonely and it’s a goal that we take very seriously. Find a group. Find support. You will all be better off for it.

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Autism and Another First Time

Autism and Another First Time

I’ve always told other autism parents to brag about their kids – brag about every small step they take! Who cares if it takes them a little longer to master something? The point is – they did it! And you deserve to cheer for them just like every other parent.

Today – it is my turn to cheer again! Well, mine and several other parents. Yesterday, I got to go to the movie with Casey, Mandy and Rob! We’ve gone to drive in movies several times, but Rob has never been in a movie theater. It’s just too loud and his claustrophobia can get bad in dark places, especially with a crowd.

Our local movie theater did a sensory friendly movie. They have done it before, but we had never been able to go. A sensory friendly movie means the lights aren’t completely dark and the sound is kept lower. Talking during the movie isn’t a big deal (Or squealing, hooting, or humming!) Moving around is fine (as long as the moving around doesn’t put anyone else in danger) It was the perfect time to see if Rob would enjoy it.

Casey has been to movies before and seemed to enjoy, but she did get antsy and want to go to the bathroom or anywhere else besides sit and watch. When we got to the theater, one of their friends was there, too, so we could all walk in together. They each got popcorn and a drink. I turned around and had lost Rob, already – he didn’t even wait for me – he just walked into the theater. 🙂

I let him pick the seats, sort of, as he was going to walk clear to the front row. He had a struggle with the seat, as he couldn’t figure out how to sit on the folded seat. He finally put his drink in the cup holder and carefully sat down. Casey panicked when the seat rocked back and jumped up. She wanted to move because she thought her seat was broken. I told her to just slowly lean back – that the seat rocked and she was finally able to relax in the seat. But, it showed again that we need to show our people with autism new things – not just expect that they will try it because we say it’s fine. I had to hold her popcorn and her hand before she was able to relax. And, that’s fine – it’s just something I forget at times. Even as brave as she is, she still gets nervous and needs my hand to feel safe.

Rob loves popcorn and that kept him entertained until the movie started. The owner of the theater came in and told us the sound guy was going to turn the sound off completely and slowly turn it up. We were to tell her when it was okay so everyone would be able to enjoy the movie. This is another reason I love living in a small town! How many big theaters have that kind of service?

Rob was completely relaxed through the movie and often had a grin on his face. I got worried about him once, but it turned out he needed the bathroom (and, of course, so did Casey! 🙂 ) and he watched the rest of the movie happily. I wish I could have gotten a picture of him watching – he looked so happy and relaxed!

Honestly, I was ready to cry. So many times when I took Mandy and her friends to the movie, I wished Casey and Rob could go. I wondered if they would ever be able to enjoy things like movies. Yesterday, I got my answer! True- it took 29 years, but it happened and I’m still so excited about it!

I’ve said it before and I’ll remind you again – never, ever stop dreaming for your child with autism! As long as you keep dreaming, your child will keep trying. Isn’t that what all parents do? 🙂

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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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Why I Write this Blog

Why I Write this Blog

I’ll be honest. I’m not feeling particularly inspired today about writing. Nothing terrible has happened – I just couldn’t think what I wanted to write or if it even mattered if I skipped a week.

Then I thought about taking Blue (my dog) to the playground the other day. It’s completely covered in snow and we were the only ones there. She ran and sniffed while I sat and watched her.

As I was sitting there, I noticed a sign stating the playground was only for those under 12 and remembered the stares we got when Casey wanted to play on the playground a few years ago.

It is a huge wooden structure and is plenty big enough for adults. I’ve been through most of it so there’s no danger of Casey or Rob breaking something. But, as Rob was swinging and Casey exploring, I saw the stares. I heard the comments. One person pointedly read the sign a little louder than necessary. I ignored her, but most of me wanted to say, “You are obviously well over 12 – why are you playing on it?”

I didn’t, though. I watched Casey and Rob to be sure they weren’t bumping into little kids. And noticed they were the only ones being careful (though I’m sure most of that was due to them not liking strangers! 😊). Other kids were knocking each other down and not paying any attention to the smaller kids.

But – we got watched closely. We got the comments. We got stared at.

Because we were different.

And that’s why I write this blog.

So maybe the next time a family goes to a playground, they can just sit and enjoy it.

Maybe the next time a family is having dinner out and someone is flapping their hands with excitement, no one will stare.

Or if someone is sitting at the table with headphones to block the noise, they won’t hear comments.

Or if an adult gets overly excited about buying a new Elmo, no one will care – they will just enjoy her beautiful smile.

Or if another someone yells power ranger names when he sees colors together (party aisles are so tempting – everything neatly organized by color! 😊), other customers won’t blink an eye.

I do this so other parents don’t feel alone when they are tired, frustrated, scared and alone. I’ve been there – it’s a terrible feeling. Hopefully, some day, no parent – typical or special needs – feels like no one understands their life.

I do it to share hope – to show things do get better.

And, of course, I do it to share laughter, because autism can be hilarious at times. I have to laugh – it keeps me young! (Not that I haven’t cried, too, but laughter is so much better!)

So – share this blog wherever you can. Help me show the world how awesome autism can be. Help me bring more awareness and acceptance. Help me bring hope to exhausted families.

People with autism are incredible and the world needs to know it! 💙

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Autism and “Kick in the Gut” Moments

Autism and Kick in the Gut Moments

It’s going to happen. As a parent, there will be times that a thought crosses your mind and you feel as if someone kicked you in the gut. The thought takes your breath away – you can’t get it out of your mind. It might be that your child is leaving for college or getting married. But, when you are an autism parent, those kick in the gut moments come out of the blue – and they hurt.

I had one of these moments yesterday and had a good cry. I don’t want to get into a lot of details (though maybe I should so people will understand their actions hurt). I was reminded again that people are scared of Rob. I get it – he’s tall and he’s big. But, he’s also a huge teddy bear and as mellow as anyone can be. I’m assuming that’s why he scares people. But – it hurts this momma to hear it.

I just want people to give him a chance. He gets anxious and it is assumed he doesn’t like someone or something. Just give him a chance to explore the new place or to get to know you. Honestly, it won’t take him long to know whether he wants to be around you. Casey and Rob both sense the “true” person that we often try to keep hidden. If Rob doesn’t like you, he will just act as if you don’t exist. He won’t attack. He won’t hurt you. Give him time to show you how awesome and amazing he truly is. Please.

Honestly, Casey is more likely to get upset than Rob. She doesn’t get upset often, but when she does, the whole neighborhood knows it. And she doesn’t care if she is at home or in a store – when she is mad, she lets everyone know. But because many of the staff at their day hab are new, they haven’t seen this side of Casey – they have only seen the sweet, beautiful smile and the young lady who loves to go anywhere and try anything. They have seen Rob anxious, though, and that’s what they remember.

Many autism parents have come to terms with the fact their child may never get married or have children. They may understand that holding a job might be difficult. They know their child may live with them forever. The thing is – even if their young person has a job and gets married, there are still mean people in the world who can hurt someone without thinking twice and the autism parent feels another kick in the gut. Their child may want a friend – or to be invited to a party – or a job – or a place to live on their own. After all, their older siblings have all of those things – why can’t they? And those questions will bring on the tears again. No matter how many times you think you are done crying, something will happen and bring on the tears.

Maybe the fact that I have a hard time letting new people around Casey and Rob is part of the problem. I just don’t trust easily – no parent with a child who can’t communicate does, in my experience. I want them to meet new people – I just want to meet these people first.

I know that I’m luckier than many autism parents. Casey and Rob are happy with their lives and don’t seem to think too much about Mandy getting married or having her own house. They don’t seem to think about not having a huge group of friends their age. They are happy with their Elmos and signs and socks and cards. They are happy that they get to spend time with Mandy and Cory, Grandma and Grandpa and Tracie and several others.

I feel for the parents who have children with autism who can communicate – who know they are different and don’t like it. It has to be devastating to try to explain to your child that other people won’t be their friend because of autism. Or that they can’t have the job they want because that employer won’t give them a chance. Or that it isn’t safe for them to live on their own.

I know there are more kick in the gut moments in our future. Every life has those moments. I just wish those moments didn’t come because someone wouldn’t give Casey or Rob a chance to show how awesome they are. That is the hardest thing for me – knowing someone only sees “autism” when they look at Casey and Rob and not the amazing individual who just happens to see the world in a different way.

Get to know them. Please.