Category: autism acceptance

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I Have Autism – I am not Deaf

I Have Autism - I am Not Deaf

I made a meme that said this last year – only I finished it with “you don’t have to yell.” Today, my thoughts are with the irritating people who say the dumbest, unkind things to the kids without thinking. This happened yesterday and Mama Bear came very close to ripping into someone outside of a store.

Tracie and I took the kids on a long hike yesterday. We walked over seven miles, with Rob and Casey in the lead most of the time. After our walk, we had supper and stopped at a store so Rob could spend his birthday money on signs and Casey could get a coloring book.

As we left the store, we ran into someone the kids know well. After Casey shared we had been hiking and I said how far we had gone, this person tapped Rob and said he was shocked we got him to move… implying he is lazy.

Let me tell you – it was all I could do not to lay that person out right there. I loudly told him how much Rob loves to walk and that we have to keep up with him. Then I said we had to go and we walked away with me muttering under my breath to Tracie.

How could he say that? Rob is not deaf or stupid. He understands everything that is said around him and he was hurt. I wish you could have seen the look in his eyes. This was someone he used to look up to – to have fun with and he hurt Rob.

Why do people do that? Why do they assume if someone doesn’t talk much that they can’t hear? Or if people with autism don’t show much emotion that they can’t be hurt?

I get it – people say things without thinking sometimes, but they apologize when they realize what they said. I’ve done it and I say I’m sorry. But, when you are talking to someone with autism, you need to be more careful!

Rob had a hard time letting go of what was said to him. Later last night, he leaned his head on me and said “Robbie good boy?” I gave him a big hug and told him he is always a good guy and to not listen to what others say. He held on to me for a few minutes before he went back to his iPad. I could feel the anger building again. I just wanted to smack that person.

I know Casey and Rob are always listening to what I’m saying. They may not look like they are paying any attention, but they are. At times, I swear they can read my mind – they seem to know about things that I am sure I never mentioned near them. I’m sure I thought I was whispering or that they couldn’t hear me over the shower running, but I guess I’m wrong.

Even if your child isn’t looking at you or even seem to know you are near, they do know! They are listening to you, even when they can’t acknowledge what you are saying or doing. Please, be careful what you say. Your words can hurt. And they may not be able to tell you they are hurt and need reassurance. That scares me – I never want Casey or Rob to think they are anything less than amazing and that they are exactly as God wants them to be.

I try to explain to them that people say things they don’t mean at times, but the kids are so literal and only communicate what is needed. They just can’t understand that other people aren’t like them. They don’t understand sarcasm. I don’t know why they have to understand when someone is mean – why can’t that be something they don’t know? Honestly, I think it’s more the feelings they sense, more than the words that are said. Either way – it hurts them and infuriates me.

Choose your words carefully and don’t be afraid to stand up to people who don’t talk kindly to your children. Let your inner Mama (or Papa or Grandma or Grandpa!) Bear come out and straighten them out. If they don’t like being told how to talk to your kids, tough. Your children are more important than anyone else!

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Autism and Keeping Hope Alive

Autism and Keeping Hope Alive

If you follow our Facebook page, you have probably seen that we’ve been trying lots of new things this summer and most have worked out better than I could have hoped. I wish I knew why – I would gladly share it with everyone, but I don’t. My guess is probably simple maturity for Casey and Rob and the fact that life isn’t one long stressful, what’s-going-to-happen next kind of time anymore, so I’m not exhausted. We have more good days than bad – and even the bad are more “rough” than bad.

Yesterday, we went to a car show. Casey reminded me all week about it. Cory has a trans am that he shows and the kids love to go see it at shows. We weren’t there very long (honestly, while they both look at the other cars, once they see Cory’s, get a picture taken with it and buy a drink, they are ready to go). But – we went! A few years ago, I probably wouldn’t have attempted that without another adult. I simply couldn’t trust that neither would dart away – or that one would want to look at something and the other wouldn’t stand still for it.

We head to the park often to walk. We go to stores (though, honestly, if I have a long list of stuff I need, I don’t take them – finding everything and keeping them with me just takes too long! 🙂 ). Also, we tend to take up an entire aisle, as Rob holds my right hand and Casey my left elbow when we are in crowds. I keep telling them I promise not to leave them, but they feel safer holding on. They will even hold hands with each other when they are anxious – I do love seeing that! Again, a few years ago, I took them in stores only if there was a desperate need. Casey wouldn’t wait for me and Rob’s sensory issues were terrible.

I remember taking Rob to the store when he was younger. He hated the lights – the noises – almost everything about going to the store and he often hid in the cart the entire time. I think he was 8 – 9 and still climbed into the cart (in the big part, not the child seat) and pulled his coat over his head. We were in Wal-Mart one day and it was not a good one. I was tired and on the verge of tears – just wanted to get what we needed and go home.

As we passed a woman with two boys, I noticed the boys pointing at Rob and laughing. My anger flared, but Rob didn’t seem to notice so we went by. Unfortunately, we passed them in the next aisle – and one of them was dumb enough to make a loud comment about him being too big to be in the cart – was he a baby? Rob looked at the boy, back to me, and buried his head in his coat. And Mama Bear appeared.

I loudly (so the boy’s mom could hear) said ‘my son has autism and the lights in the store hurt his eyes – but people like you hurt him more! I hope you never have someone make you feel like you just did to him”. By then, his mom was coming towards us and asked what was wrong. I told her what happened and she was so angry with those boys. She gave them both hell right there and made them apologize. She was almost in tears as she promised to have another talk with them when they got home. She looked right at Rob and said she was sorry. I bet those boys don’t forget that! 🙂

Anyway – while Casey was more likely to run away from me, Rob just couldn’t handle the sensory overload. It was just easier to leave them at home. There are still days that I wouldn’t attempt to take them both to the store – if he’s already anxious or she is on edge, we stay home!

When Casey was small, we couldn’t use the AC in the car – the noise made her scream every time. There were several restaurants that we couldn’t go in because the heating/cooling noises were just too much. I couldn’t take them to a pool because she would get into other people’s coolers and he wouldn’t stay in the shallow end. Plus keeping an eye on Mandy, too. (That’s a big reason we had a backyard pool for years – I miss it so much now!)

In the last few weeks, we’ve gone to two different public pools (including the one where Rob got stung two years ago and he hasn’t been able to let go of his anxiety to go back) and enjoyed every minute. We went on a short vacation and there were no meltdowns, no anxiety. Just an amazing time. We went to a family reunion. We went to a birthday party. We went to a cookout. We’ve hiked, we’ve gone shopping – so many things that other families take for granted – we did.

I will admit – I plan like crazy for some of our outings. I try to think of everything they might need to be successful, but that’s still better than planning what we need just to do it! And I keep an eye on them constantly when we do go places. I watch for signs of anxiety in Rob and for Casey to get into things she shouldn’t. But – I can let go of their hands and I can visit with people! It took years of hard work on their part and lots of other people, but we finally can do some things. I have had so many summers that I was depressed when it was over because I didn’t think they got to do enough fun things, but this year, I think they have. And that makes me feel so good!

I want them to experience everything that they want to try. Right now, Casey is repeating Zoombezi Bay over and over and over. It’s a water park beside the zoo – I have no clue why she thinks we are going there tomorrow, as I’ve never mentioned it and honestly, don’t see us ever doing. (But I won’t say never! 🙂 ) Rob doesn’t want to go there – he wants to go to Hopewell tomorrow and is happy that he is getting what he wants.

When I think of how scary and nearly impossible it was to go so many places when they were little, it’s a miracle to me that we are able now. This is why I want you to never, ever give up hope. Your miracles will be different than ours, I’m sure, but they will happen. We’ve had so maybe little miracles in our lives!

Rob stopped “eating” his shirts! Casey stopped having meltdowns! Rob will try new foods! Casey wants to go new places! They are both sleeping (shhhhh! I don’t want to jinx that! 🙂 ) They both graduated from high school with a diploma. Rob is more wiling to go new places, with lots of supports. Casey never hurt herself when she broke windows with her head. Rob survived all of his accidents. Despite everything, Mandy grew up to love and cherish Casey and Rob (and married a guy who does the same!).

You will have little miracles, too. When you are so tired crying takes too much energy, remember that. Your happy times will be different – maybe your child finally leaves her clothes on! Or your son learns to use the potty. Maybe your child learns to say “hi” using a speech app or learns sign language. Don’t ever judge your journey by comparing to anyone else’s. Our journeys will never look like, nor will they occur on the same timeline.

Also remember that it truly is the little steps that matter. Other families may not understand my joy when Rob wears a new shirt, but that’s okay. Our life is special to us and we don’t need their joy when we have our own. I also know it’s damn hard to see any miracles at times. When your life is 24 hours of stress, it’s nearly impossible to see small steps. You want the big, huge ones! I get that – but you can’t get the big ones without the little ones and some days, a little miracle can go a long way towards bringing a smile to your face instead of tears.

I know I’ve said this many times, but please, please – never give up hope. When you are so tired you can’t see any hope, find help. There is help available (and I know how hard it is to find!) keep looking and making calls and get that help. Beg someone you trust to let you take a nap or to get groceries for you. I hate asking for help, but I do – and you need to do the same. Look for your small miracle every day as you tuck your child into bed at night (and look again every time you have to send them back to bed or remind him to stop singing Long Black Train cause Casey is trying to sleep! 🙂 )

If you are reading this and you don’t have a child with autism, maybe you could be someone else’s miracle. Offer to sit with the child while the parent takes a shower or a nap. Take lunch to someone or even send a card and tell them they are doing an awesome job! You have no idea how much random texts from friends help me some days! You can be that miracle! 🙂

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Autism and a Fun Day to End a Special Week

Autism and a Fun Day

Casey and Rob came home Friday morning after a week at Camp Echoing Hills. Rob leaned his forehead on mine for a second when he saw me, while Casey gave me her sweet smile. It was getting miserably hot, even early in the morning, so they didn’t want to stand around too long. We drove around to the building where Mandy works so they could say hi to her and headed home.

She went right to her room to listen to music and fold socks. I peeked in after about an hour and she was still happily swaying back in forth in front of her dresser folding her socks. Rob crashed. He turned his AC on and that was that. He got up for lunch and went back to bed. I hope that doesn’t mean he kept his entire cabin up the whole week!

Rob told me he watched Mary Poppins and he went swimming. He ate Pop Tarts. And he went swimming. He took a shower. And he went swimming (are you starting to notice the pattern? 🙂 ). He was happy to be home, but he had fun, too.

Casey said she saw animals (she didn’t go to the barn alone! Score one! She did get upset that it was storming/raining when it was her turn to go, so one of the camp directors took her in the rain – how awesome is that?) and sang Baby Blue in the talent show. I asked her if Rob sang or if he watched – she said Rob can’t sing. 🙂 She also told me she went swimming, but only one time.

It made me feel so good to see how the counselors came to give the kids hugs and say goodbye to them. It was crowded so it was hard to see everyone – and Casey and Rob are ready to go! I wish I had time to talk to their counselors and see what they did and if they made any friends. I have so many questions, but the most important thing is they had fun. Casey has already asked when camp is next summer. Rob won’t ask, but he’ll be ready to pack when I tell him it’s time.

Today, we got to go to a birthday swimming party! Andrew is a young man whose mom worked with Casey and Rob a few years ago and he met them. He turned 14 this week and asked if Casey and Rob could come to his birthday party. It was going to be at a pool near our house that we haven’t been to, yet. To be honest, I wasn’t sure about going, but knew we needed to try it.

We went early before the pool got crowded (though, it never did today!) and they both got right in the water. I wondered how long they would last, as it is just a pool and doesn’t have water spouts or anything that Rob likes. We were there for over 3 hours! And really, the biggest reason we left wasn’t them, but that it began thundering and Casey does not like storms.

She got to have pizza and cupcakes while Rob enjoyed the almost empty pool. And – he was swimming! He kicked off the wall, kept his head underwater and was using his legs and arms. I’ve seen him kick before, but never use his arms, too! Maybe someone at camp helped him? I don’t know – I only know that every time I tried to show him, he ignored me. 🙂 He had a small ball and played with it for a long time. Both of them played catch with Andrew, a friend of his and his mom, Tory.

It was so much fun. “Typical” families rarely think about a birthday party like a family with special needs does. I hoped that Rob wouldn’t be too loud and disturb people who were trying to relax. (He did start repeating his favorite sandwiches from different restaurants and I asked him to use a quieter voice, but I don’t think he bothered anyone.) I hoped Casey would not help herself to anyone else’s coolers (yep – that’s happened many times!). I hoped she would be okay leaving early, if he needed to.

I hoped she would be patient for the “birthday” part of the party. I hoped he would last long enough. I didn’t want their quirks to ruin Andrew’s party or disturb other guests. Casey joined the birthday part, but Rob chose to stay in the pool and that was fine. My little weather man told me it was “stormy” and the sky was beginning to look dark, so we left soon. I can’t wait to take them to the pool again!

I wish it was always as easy as today was. Andrew is a special young man to have invited them to his party and his family was very welcoming to us. That’s not always something we can be sure of finding.

I truly hope that everyone who helped care for Casey and Rob and make sure they had a safe, fun week knows how much I appreciate them. I can’t always find each of them to say thank you, but they are in my thoughts. It does take a village to raise children (and adults! 🙂 ) and they are all part of our village!

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Autism and a Happy 4th of July!

Autism and Happy 4th of July

I know it’s a little late to be wishing you a happy 4th, but it is still the holiday weekend and last week, I was too excited to share all about our trip to think about the 4th. Casey, of course, reminded me often in the days leading up to the holiday. You know how she loves her holidays! It’s not her autism – it’s just her. I love holidays, too – she got it honest. (Though, I don’t tend to be quite as obsessive as she is over details and plans! 🙂 )

She asked about going back to Sesame Place several times (She will continue to ask. Rob has not said a word about going back to the ocean, even though I know he absolutely loved it!) and wants to written on her calendar. When I wouldn’t do that, she wanted our July 4th plans written down. She insisted on a cookout and fireworks.

That’s easy enough. She doesn’t care about having a big, elaborate cookout. Hamburgers on the grill and baked beans are enough to satisfy her. She also wants sparklers, poppers and to go see fireworks. Again, Rob could care less. He just sits and lets her make all the plans for us. 🙂

This year, our town made plans to do the fireworks on the 3rd, in case of bad weather. ( I don’t know about you, but this has been quite a summer for crazy rain/storms where we live!) Casey was not thrilled with the idea of the fireworks not being on the “right” day, but she didn’t get upset. She just kept reminding me so I wouldn’t forget she wanted to see them.

And here again is a difference between them. She will constantly remind me to take her to see the fireworks, but he never asks. But – when we get there, he is the one who truly enjoys watching them. (We can see most of the fireworks not far from our house, so we don’t go into the crowds – it’s easier for both of them to not be close to the loud noise!) She sees one and is done. She can check it off her list of requirements for the 4th and is ready to go home to bed. He wants to stand and watch them.

On the 4th, Mandy and Cory, Grandma and Grandpa were going to come and have supper with us. I had already bought the required sparklers and poppers. I even found a cute headband for Casey to wear and she had a new shirt that she called her 4th of July shirt. (Tho, she didn’t wear it that day – no idea! ) She watched me bake brownies and cookies and made sure I made her favorite pasta salad. She reminded me all day that we were having a cookout. Rob never said a word.

When it was time for everyone to come, Rob came outside with me. She wandered out in her slippers (you can’t wear flip flops at home – you have to wear your winter before bath slippers, with patriotic socks, of course! 🙂 ) and sat in the swing. After we ate, Rob went back to the AC, while she waited patiently for sparklers. She doesn’t want to wait for dark, but that means her bath schedule will be changed.

Rob jumped at the thought of sparklers and ran back outside. Again, he never mentions them like she does, but he enjoys them more than her. I light the sparklers from a candle and hand to each of them. Casey squeals ouch whenever a spark gets to close to her. Rob holds the sparkler carefully and grins. He never puts it down until the very last spark is out (I put a bucket of water on the patio for them to drop the used ones in) and is immediately ready for the next one.

Casey seems to be afraid of them, but she has to use them all. It isn’t possible to just say she is done and walk away. It is a tradition – you never stop while there are sparklers available. She popped a few poppers, too, even though she really doesn’t like them. But, again, it’s on her “list” of what to do for the 4th and she can’t relax and be happy until all of her items are checked off.

Finally, the cookout was finished. She had sparklers and poppers. She saw fireworks the night before. Now, now – she can relax and smile. She can happily sit in the swing and giggle. Until everything is done, she simply can’t enjoy it. She is too worried about not doing something. That’s the autism.

On July 5th, she got up and said she wanted a blue flag shirt for July 4th, 2020. She also expects a cookout, sparklers, poppers and fireworks – on the 4th, not the 3rd. 🙂 I asked if we could wait to plan next year a little closer to the date. “No.” She even told me what she wanted for the cookout. (She wants them same stuff for every cookout! 🙂 )

I hope each of you had a wonderful holiday and it was perfect for your family! Whether that means a big party or just your immediate family. A crowd and fireworks or sparklers in your own backyard. The 4th of July can be an especially difficult holiday for people with autism. Not only is their routine changed, but the noise of fireworks can cause sensory meltdown. So can large crowds. Lots of the “traditions” for this holiday can be completely opposite of what our families need.

Remember, despite what some people may say, doing what your child needs to be happy and safe is not “giving in” to them. Do what’s best for you and ignore others. They have no clue what your child’s needs are and if they aren’t willing to try to learn, they simply aren’t worth your anxiety.

Happy 4th weekend!

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Autism Win – An Amazing Experience for All

Autism Win - An Amazing Experience for All

Let me tell you – I am still so awestruck and excited about how well our trip went last week! You know I was worried – I shared that last week – but I’m so happy to say that we had a wonderful – awesome – amazing time! Autism didn’t bother us at all! (Partly because we planned so well, but also because Mandy and I are always aware of what bothers them and what could go wrong! Have you seen the meme about autism families scanning the room better then FBI agents? Yep – that was us! 🙂 )

One of my biggest travel worries was finding a safe bathroom for Rob. Happily, we discovered the Pennsylvania turnpike has family bathrooms at every stop! There was one time on the way home that it was occupied and he really needed to go and took off for the men’s room. I waited as patiently as I could outside (seriously – how long can it possibly take?? ) and he was fine. He danced out with a grin on his face and wiping his hands on his pants.

The ocean was beautiful! We dropped everything in our hotel and went straight to the beach. I tried to warn Casey that the waves are stronger than she knows, but she ran right out in the water. The first wave made her stumble and the second knocked her over. She got a face/mouth full of salt water and was not happy. She ran back to the beach, gagging and trying to get the salty taste out of her mouth. After that, she was more careful about how far she walked into the water. She was happy standing and letting the waves flow around her legs.

Rob went in to his knees and stopped. As the waves splashed, he said “It’s wet, Grandpa Mack!” (Grandpa was at home – not with us! 🙂 ) He just stood and watched the water. Soon, he backed up and sat down. The longer he sat, the more relaxed he became. He was almost asleep at times and always had a small smile on his face. He didn’t say another word – just watched the water. Casey got hungry, but he refused to leave the beach for chicken! I knew then that the ocean was a huge hit! We enjoyed the beach for a long time after the girls went back to the room.

When it was bath time, we discovered the room only had a shower – and Casey doesn’t do showers. But, again, we were amazed that she jumped in without a problem. The room had a pull out couch in a little alcove under the air conditioner and Rob claimed that area as his. They both went right to sleep – another win!

Wednesday morning, we went to Sesame Place. Even with all the research Mandy and I had done, we were both a little nervous about how the day would do. We got special wrist bands so we could skip the lines at rides and rode a roller coaster. (I really do NOT like those things!) We checked the schedule and discovered we could go meet Elmo!

Rob had no interest in waiting for Elmo, so Mandy took Casey to meet him and Cookie Monster while I took Rob on a few rides.

I was on a ride when she met Cookie Monster, but Mandy told me how she lit up – ran up to him and got a hug. I did see her face when she turned the corner and there was Elmo! I took 15 pictures of her as her walked up to him wearing her Elmo shirt. I wish I could describe her face – complete, total and pure joy is the only way I can say it. Her smile was huge – her eyes were twinkling. She has seen Elmo in shows, but to get to hug him – meet him – say hi – it was like a dream come true to her. I had tears in my eyes watching her happiness. I wish every parent could experience a time like this with their child.

After lunch, Casey wanted to meet Big Bird, Bert and Ernie. Rob had no interest in that, so Mandy took him to a water playground while Casey and I got to see a show and meet her “friends.” She waited so patiently to meet each of them – and was dancing with excitement while waiting for Bert and Ernie. She couldn’t take her eyes off of them and ran right to them when it was her turn. (Another awesome thing about Sesame Place is that they have photographers to take pictures of your group throughout the park and you can purchase those pictures when you leave. But – at each “meeting” place, there is a staff person who will use your cell phone to take pictures, too!)

We changed into our bathing suits and found Mandy and Rob at the water play area. And here was the worst thing that happened on our trip. Rob was standing under a water spray and was finished on the water slides. Casey wanted to go down them, so I took her. I told her over and over when she got to the bottom to wait for me (I was about 10 seconds behind her). When I got down, she was gone. Just GONE. The place was packed and I panicked. I knew she wouldn’t leave the play area, but still.

I ran to Mandy and she started looking, too, but she needed to stay near Rob. She looked as much as she could while I ran around the water area. Finally, (and though it seemed like hours, it was really less than 3 or 4 minutes) I saw her at the top, in line for the slides again. I saw red. I went back to Mandy to let her know I found her and she went up to get her. At first, Casey said no when Mandy told her to come down, but she seemed to notice Mandy was as mad as I was and decided to come down.

Casey kept giggling because she was nervous that we were angry. We kept telling her she CANNOT leave like that – that she scared us. She finally seemed to understand, but I can still feel the panic we felt. They are adults and they need freedom – but not hundreds of miles from home, in water, with thousands of strangers. Nope, no way. Stay with us or we leave. It’s simple.

After the water, we found a cool, shady spot to watch the parade. Casey was still so excited and Rob was doing well (thanks to the water pouring on him for an hour!) but Mandy and I both knew they were going to be ready to leave after the parade. The excitement overload was coming. She enjoyed the parade and then went shopping for souvenirs with Mandy while Rob and I waited on a shady bench. He was about to overload from the heat and the excitement and had no desire to go into a crowded little store.

Casey was thrilled to discover she could buy Sesame Street socks at Sesame Place! And “da biggest Big Bird.” And then it was time to go back to the beach.

We sat on the the beach until almost dark that night. Casey and Rob both crashed quickly that night and slept even better than they had the first night away.

Thursday morning, when Rob got up, he said “Tomorrow’s Hopewell?” I said yes – and he jumped up, started putting his socks on and said “Let’s go!” But he was fine with going to the beach again before we left. When we got back to the room again, he started packing everything. When I came out of the shower, most of the luggage was already in the car. They were ready to come home.

We never heard Rob’s anxiety song. He only asked for Hopewell twice Wednesday morning before we went to the park. They both ate and slept well. They rode quietly in the car (they have always been easy in the car). They looked out the windows and just enjoyed the ride. (By the way – Rob was beyond thrilled with the wind turbines he saw in PA. He turned around in the seat and watched them as long as he could)

Last week was more than a wonderful vacation for us. It gave me hope that Rob can enjoy new places and that his anxiety won’t always be so hard for him. It reminded me again to never underestimate them. Autism is always with us, but we can still have a fun family time away. We may not go and go and go like some families, but we can do what’s best for us and have an amazing time. We adapt and plan, adjust and revise. Then we go and hope the for best.

And sometimes, like last week, it all works out and we have beautiful, relaxing memories of the ocean and pure, excited memories of Elmo and friends.

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Autism and Taking a Vacation

Autism and Taking a Vacation

In just a few days, we will be loading up the car for a short trip to the Jersey shore and to Sesame Place in Pennsylvania. I’m not ashamed to admit I’m worried about it. Casey is beyond excited as she loves to go go go. Rob is the one I’m worried about. Will he say “Tomorrow’s Hopewell” a million times? (And no, I’m not exaggerating – when Mom and I took them to Virginia a few years ago, he was like an old record with the needle stuck. I thought I would lose my mind. And I knew he was enjoying the mountains!) Autism always makes things interesting.

When we stayed in the hotel a few months ago, he had a hard time going to sleep. I had to turn the TV and bathroom light on and he was able to sleep. You can bet I won’t turn them off this week! 🙂 He just really doesn’t like his schedule changed. But – I have had some bright spots that make me think that all the growing up he has done in the last year will make this an awesome trip!

Last week, Casey was talking about seeing Elmo and Ernie and Cookie Monster. He was listening, but didn’t look happy at all. So I reminded him that we were going to go swimming, too, in the ocean. I’m not sure how much he really wants to go in the ocean, but I think he will love watching the waves as much as he loves sitting by water! He didn’t get anxious listening, so I took that as a win.

The other night, we were at my parents’ house and I said, “Rob, tell Grandma and Grandpa where we are sleeping Tuesday.” He looked at them and said, “Hotel!” I will admit it – I did a little dance in their kitchen! He responded appropriately! Then I said, “Tell them where we are going to swim.” And he answered “Ocean!” Yep – another dance from me and a squeal! I was so excited (and I still am! 🙂 ) and I had hope that maybe he would be okay on the trip.

I still have that feeling, but thoughts are circling in my head. And, I know most of these things are not a big deal at all. Mandy is going with us and if need be, we will split up at the park. I doubt Rob will want to wait while Casey “meets” her friends, but as Mandy says, he does like to watch people. One of us can take him to ride while Casey does her thing. Or maybe he will want to meet them, too. (highly unlikely as he knows it’s people in costumes – she doesn’t seem to realize this and he plays along for her sake. 🙂 )

Will they be too noisy in the hotel? She is not light footed – anyone in a room under her may be in for some thumps. Will he be singing Long Black Train over and over? I kind of doubt this, as we aren’t planning on spending much time in our room. The hotel has a private beach and a pool. The room is to sleep! I think we will have to drag him inside at night, while Casey will be on the beach for an hour and be ready to do something else.

Will we be able to find a bathroom for him on the way over and back? I’ll take him in the women’s restroom, but he hates that. He knows he doesn’t belong there, but…. some times, we have no choice. Will he be willing to wear his new swim trunks? And a different shirt to get wet? Will she be willing to wear a t-shirt over her bathing suit (she burns quickly!)?

Would it be possible for him to take only one blanket and not an entire suitcase full? Thank God for suitcases on wheels! Will she pick out nice shirts and not what she gets in her head she is supposed to wear? Will he wear flip flops on the beach so his shoes don’t fill with sand?

I know most of these are not a big deal in the grand scheme of life. They are little things – but with autism, sometimes, it’s the little things that make or break a day. Sometimes, I get irritated with autism. I just want to take the kids away for a few days without the extra stress of trying to remember everything they need to stay somewhat on their schedules. Snacks for pill time. Snacks for after bath (and no, these are not the same – though we may try that on our trip). Pills and the “right” clothes and ipads and chargers and blankets and stuffed animals. Insurance cards, IDs and guardianship papers, just in case. Plus the usual stuff.

Every family with special needs knows that going away for a few days is not an easy thing to do. We can’t just grab some clothes and go. We have to carefully research where we are going for places that are accommodating. We have to look for accessibility and services that might be available to help our family have a more enjoyable time. (I don’t want to think about the hours I’ve spend looking at Sesame Place’s app to learn all I can before we get there! And the park is Autism – certified – staff is trained in autism and services are available.) It should be a simple thing to go to a park that welcomes families with autism. I’m just over thinking things.

But – it’s so much more relaxing for all of us when we are knowledgeable before we get there. We have our tickets, so no waiting in line. I’ve downloaded the forms so we can get a pass to skip lines on some rides. I know we need to be at the parade route about 30 minutes before it starts. My head spins with all I’m trying to remember.

At the same time, I know going places is the only way to for Casey and Rob to learn life skills. I know this is something they will both enjoy, once we get the details worked out. I know that autism awareness can only happen when families like ours GO places and show the world how freaking awesome and amazing our kids are! So – watch out New Jersey! We’ll see you in a few days! Watch out Sesame Place – she’s ready to meet everyone!

And Mandy and I deserve time to sit on the beach and watch the waves. We deserve a break from “real life” and to sink our toes in warm sand and feel the sun on our faces while we listen to Casey and Rob giggle at the waves. Your family deserves this, too! Plan, worry, stress, pack – and then go. Have fun and watch your child learn more about the world. Meltdowns may happen – things won’t go according to plan. But, really, who cares? Life goes on despite all of that. Keep spreading awareness and enjoy spending time with your family!

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Leaning on Each Other – Siblings with Autism

Leaning on Each Other - Siblings with Autism

Most people assume that since Casey and Rob won’t talk very much that they ignore each other, too. And sometimes, that’s true – what siblings pay attention to each other all the time? But they don’t ignore each other. Autism doesn’t define their relationship with each other or others. Their personality does.

Last week, Tracie and I took them hiking at a state park near us. Casey and Rob were so excited to finally be hiking with Tracie and couldn’t wait to get there. As soon as we got out of the car, Rob took the lead and Casey followed. Every time we came to a different path, he took the lead and she followed him. She completely trusts that he will find his way back to the car. The funny thing is she rarely turns to see if Tracie or I am following them.

As we were walking, we came to a huge tree that had come down over the path. Rob sat on it and swung his legs over. When he was on the other side, he stopped to wait for Casey, who for some reason, couldn’t figure out how to get over the tree! We had to help her and they both started walking on the trail before they made sure Tracie and I got over it! They both trust that we will never leave them alone and we will eventually catch up.

It’s funny. They lean on each other in different situations. Rob looks to Casey for whether to wear a coat or boots – she knows he will find the car no matter where we are. He watches her in restaurants – she follows him in crowds, usually holding hands. If they are some place that isn’t familiar to either of them, they stick together and stay close to someone they trust. The trails we were on last week were completely unfamiliar to all of us, but Rob took off. He is confident in the woods. (I don’t know what he would do if he didn’t have a trail to follow and I hope I never find out!)

She feels safe if she is following him. I find it so amazing that, despite their autism, they lean on each other just like typical siblings do. They understand the talents that each of them have and trust those talents to keep them safe. Again, I’m not sure what either of them would do if they found themselves in an unfamiliar place with strangers. That thought is enough to keep me awake at night and to say a prayer that never happens.

When Rob knows he is going somewhere different, he asks for Mandy or Casey. He doesn’t like to go strange places without one of them. It seems if he can go on an outing with their day hab, he will only go if Casey is going or a staff member that he trusts. If not, he will choose to stay at the hab center.

Casey will go anywhere with anyone (and this scares me to death! Of the two, I think she is more likely to walk off with a stranger) and she loves new places. This is where their personalities define them. He is more cautious about people – he pays more attention to them. She ignores most people. She doesn’t care what others think while he worries constantly about that.

His anxiety causes problems for him, while her need for structure can get her upset. This is just them – it isn’t because of autism. Maybe she shares her love of schedules with Mandy. Maybe Rob is a leader at times because he is like me. Many of their “quirks” can be seen in other family members. Not everything in their lives is autism and I wish more people understood that.

They lean on each other, and Mandy and Cory, because that’s what siblings do. It isn’t their autism – it’s the love they have for each other. They know the strengths that the other has and use those strengths. They understand when the other is nervous or scared and try to help. Casey is especially worried when Rob is sick or hurt. She has to constantly check on him and will put band aids on him whether he wants them or not. (even if he doesn’t, he lets her do it, then takes it off when she isn’t looking.)

I wish that every family had siblings that leaned on each other like they do. I don’t know what I would do without my brother to lean on and I’m sure Mandy feels the same about Casey and Rob. Theirs may not be the usual relationship, but that doesn’t make it any less special. I know it’s hard for siblings when one has special needs. I know many families get torn apart by it. My hope is that if that does happen, eventually, the relationship can be repaired. Sadly, some people just cannot handle being different and the stress that comes with that.

Casey is more head-strong than Rob. I just asked her why she follows Rob in the woods. Her reply? “Bigger.” 🙂 Yep – he is bigger. Maybe she thinks he can save her from animals. Maybe she knows he will break branches that might hit her. Maybe she knows that he will find the fastest way back to the car so they can have a snack. 🙂 Either way, she trusts that he will take care of her.

I just love watching their relationship as it grows. As a mom, watching my kids enjoy, support and love each other is the best thing I could ask for. Don’t give up if your children aren’t to this point, yet. They have plenty of time to learn to trust and have fun together!

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Autism and Family Gatherings

Autism and Family Gatherings

Until yesterday, the last time we had a family reunion of my aunts and uncles, cousins and my cousins’ children was 10 -12 years ago, I think. It was held in a school that both Casey and Rob were comfortable in and was close to home. I don’t think they even made it till we ate before they both needed to get out. The noise, the crowd – it was too much for their sensory issues and autism. Mandy took them home while I stayed.

The reunion yesterday was held in a strange place with a bigger crowd. The room wasn’t very big (which actually may have helped – the noise didn’t echo!) and I had concerns for days before the reunion about how Casey and Rob would do. Mandy was going with us and I knew that would help, but I had been hearing “Long Black Train” for hours in the days before the reunion. I told my mom we would try to stay an hour.

I could picture all of the things that could happen. She could knock someone over trying to look at their socks. He could Long Black Train or add his ear splitting yells. She could push through people to get to food or decide she wasn’t going to wait to get more. He could get fixated on magazines or the bucket of KFC. She could shut down and ignore everyone. He could run out the door (there wasn’t anywhere for him to go, but since he doesn’t look where he is going, he could plow a child or an elderly person over!).

I took their iPads and made sure there was something there that he would eat. (The KFC was a treat for him – he was thrilled!). I knew there probably wouldn’t be any internet, but they could play with the apps and use their headphones to block out the noise. I really had little hope we would be there long, but I really wanted to see everyone.

I made sure they both ate breakfast and I let him wear a shirt he picked out. They helped carry everything into the building and found seats together. Rob was excited to see Uncle Jeff come in and Casey was happy that Anna got to come. They sat so patiently as people kept coming. They even said “Hi” and used names when people spoke to them! I had to remind them a few names and introduce others, but they did so well! It helped that they could follow Mandy’s example, but they were both willing to put iPads down (sorta) and say hi.

When it was time to eat, they picked out what they wanted and waited patiently again until they could get more. As they were waiting, Rob got a bad case of the giggles and couldn’t stop. I have no idea what he was laughing about, but he was so happy! I figured when they finished eating, they would both be ready to go, but they weren’t. Casey went outside with Mandy, but Rob chose to stay inside with me. When it was their turn for pictures, they both went right outside and stood. Rob is even looking at the camera!

He stretched out on a couch and watched people. She sat in a chair, rocking back and forth, and did the same. Every time I checked, they were happy! (and she wasn’t trying to constantly sneak food!)

We stayed for three hours! And I decided when it was time to go – autism didn’t ! How amazing is that? I’m so used to autism making decisions for me that it felt so odd to be deciding on my own! 🙂 They both helped put our things in the car and we even went shopping after. He was quiet and calm in the store and we stopped for ice cream/cokes on the way home.

It was an amazing day! Nothing I worried about happened and they both seemed to have fun. The noise didn’t bother them (they only had their headphones. iPads for about 5 minutes while they were waiting to eat) and neither did the crowd of people. They both sat quietly to eat (we did have one moment when it seemed Casey was going to get upset – she wanted salt and refused to take no for an answer. Luckily, Mandy found some and she was happy) and didn’t shovel food in their mouths like I hadn’t fed them for months. 🙂

I am so proud of them! I know it couldn’t have been easy, but they did it. I also know that tomorrow may be a different story if we tried it again. Somehow, the stars aligned yesterday. That’s one thing about autism – you just never know what will happen! Good days and bad days happen and we never know why! I wish I could figure out the why! I suppose the bad days make us appreciate the good ones even more.

I had so many concerns about going yesterday, but not going was never an option. I just thought we would make a quick exit if needed. I am so glad it went so well! I know each of you has concerns about going new places with your children, but you really need to try it. Even when Casey was having major behavior issues, we tried. (And often left quickly, but we tried!) You never know when you may have an amazing day like ours yesterday.

And – I know many people don’t have the love and support from their families that we do. You may be worried about rude people, criticism, well meaning (but useless) advice – I get that. I feel it, too. But, if you never take your children places, how will they learn what’s expected? Just like a “typical” toddler – they need to experience the world so they can learn. If you encounter rudeness, be rude right back. You don’t need to be kind to that type of person.

And if you have a terrible time, cry when you get home, away from your child. There is no shame in crying (been there, done that way too many times!). Let it out – you will feel better! I always tried to make sure the kids were busy before crying – I never wanted them to think they were the cause. (I didn’t always succeed at that – sometimes, I was just too mad!)

Here’s hoping each of you has a wonderful day like ours yesterday! And here’s to my family – thanks for talking to Casey and Rob and trying to include them. Thanks for understanding their quirks and for loving them just as they are!

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Autism and an Amazing Memory

Autism and the Amazing Memory

Every once in a while, someone will ask me what special talents Casey or Rob has (like Rainman and counting toothpicks). I always answer that everyone has special talents and that autism has little to do with that. Both kids love music, both love art and painting. They both remember everything, but Rob doesn’t usually mention it. A few days ago, I got another scary look into Casey’s memory.

I was reading when I heard her say “Tennessee.” I asked who was going to Tennessee and she giggled. I went back to my book and she said, “July 23, 24, 25, 26, 2004.” And “Alabama Grill” (She loved eating there when there was one in Pigeon Forge). So I asked her what day we ate at the grill that trip – and she told me July 24th. And then told me what she had to eat.

I asked what dates we went to Tennessee and North Carolina. She thought a moment and said “July 23, 24, 25 26, 27, 28, 29, 2001.” And then she said we went to Tennessee with Grandma Rose, Grandpa Mack, Uncle Jeff and Joann on June 8, 9, 10, 1989 and that she threw up and Grandma was mad. (Casey would have been about 14 months old at this time.) And she was right – there was a mix up in our reservation and my mom was furious. And Casey threw up our second day there.

I knew she could have gotten the month and year of trips from the back of photos, but not the dates, nor that she threw up or Grandma was mad. So I asked when she had her wisdom teeth pulled (no pictures of that!) and she thought a moment. “September 19, 2012.” Dog bite? “October 10, 1997.” Chicken Pox? “March 15, 1997.” I asked when she fell out of her crib (She was a climber!) “May 20, 1990.” When did she cut her leg badly? “September 25, 2009.”

What happened on March 24, 1988? “Cried, rode in truck home.” (That would have been the day she came home from the hospital – 2 days old!) She told me the dates Mandy and Rob came home from the hospital after they were born and the day we moved into our house. I was writing everything down as quickly as I could think of what to ask! I asked what she got for her first birthday and she rattled off pink bear, book, blocks and other items. (Some are in pictures, some aren’t)

Then she was done. No more asking. I couldn’t do anything but sit and look at the long list and think that I couldn’t remember what I had for supper last week, let alone what I ate in a restaurant 15 years ago! I wanted to know everything – but at the same time, I didn’t. Does she remember the times I was mad? Or crying? Does she remember the mistakes I made? Does she wish she could forget bad things that happened? Does she remember the mean things that have been said to her or the teacher that didn’t treat her right?

One of our Facebook followers reminded me that while she may remember the bad things, she will remember the good and how much I always loved her. I really appreciated her saying that. I know it’s true, but sometimes, I get so wrapped up in the negative, I need a friend to remind me to look at the happy stuff, too. 🙂

This is just more proof that you never know what talent may be inside your child, just waiting to be discovered. I have seen Casey’s memory in action many times, but when it’s a long list like this one (I didn’t write all of the dates, here) it’s like a wake up call to just how huge her memory is! Another friend posted that her son could recite movie lines. Casey loves dates (birthdays, anyone? 🙂 ) Rob knows car parts, but I only know this because I see what he searches for on his iPad. 🙂 Although they both know our home phone number, knowing anyone else’s is not interesting to them.

Your child’s memory is probably huge, too – especially about whatever he/she loves to do. Maybe they know every train schedule or the lines to their favorite movies. Maybe they have a “map” in their head and can always find the car when you are out. (Rob can do this – he knows where the car is and which door of the store we came in.) Maybe math facts stick in their head or they can point out every constellation. Whatever their interest is, use it to help with the skills that are lacking. If you think outside the box far enough, every obsession can be a learning tool.

Oh – by the way…. After I text Mandy about this, she laughed and told me to ask Casey what day the calendar will end. (meaning – the end of the world.) So I looked at Casey and asked when the calendar will end…. She looked at me like I was an idiot (not the first time for that look!) and said…

December 31. 🙂 🙂 🙂

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Autism and the Need for Routine

Autism and the Need for Routines

A few days ago, I dropped something on my toe and cut it.  I didn’t think much about it until Casey saw the band aid and said “Band aid toe!” and oh – the memories that brought back!  It was one of those times that had I known what autism was, I would have definitely seen it in Casey at that point.

She had just turned three.  At that age, she had quirky habits that made us all wonder what was going through her head.  She had a few words, but didn’t feel the need to say much.  She panicked when I left her – even if she could see me walking to the mailbox and back.  She cried when left with anyone.  But, she also had a brand new baby sister that she loved to sit and watch.

She would lay beside Mandy and hand her toys and when Mandy wouldn’t take them (she was only a few weeks old) Casey would “talk” to her and make the toys work.  She loved to give Mandy her binky and she ran to check on her if she cried.  She tucked her blanket around her and shared her stuffed animals.

For her birthday, she got a new red tricycle.  She loved to stand on the back of it and push with one foot as much as she loved riding it.  One day, she cut her toe as she was doing this.  She didn’t worry about the blood.  I cleaned the toe, added and band aid and a kiss and off she went.  But…. that was the start of a few very, very long months.

Because the cut needed to be covered, I put a new band aid on it after her bath for a day or two.  The next time she took a bath, it didn’t need one.  And she lost control.  She screamed “Band aid toe” over and over until I covered it again.  As soon as she had the band aid, the screaming stopped and she ran to check on Mandy and watch TV before bed.

I thought maybe it was still sore – and really, what was a band aid?  I had no way of knowing how badly she hurt.  Until the next night and the next and the next….  if the band aid wasn’t waiting when she got out of the bath, the screams started.  I tried reasoning with her (Hey – I was young and dumb – what can I say??) I tried bribing her.  I tried to keep my cool.  We went through a box of band aids and I bought another box.  For weeks, she screamed without the band aid.

I’m sure many may think – “Let her scream – she’ll stop.”  Yep – I knew that.  But – we had just moved into our house and I was still trying to get organized, I had a new baby and Casey.  By the time bedtime came, she could have the whole damn box of band aids if it meant she would settle down.  After a few months, someone else took the decision away from me and told her no.  She screamed for hours.  Mandy cried.  I cried.  None of us slept much that night.

The next night, she never mentioned a band aid.  I knew it had to be done that way, but I was just too tired to do it.

She continued with her quirks and her singing.  She could sing the ABC’s and count to 30 at 15 months – but couldn’t say Mommy.  She started speech therapy.  We started our journey of looking for help.  The following spring, she refused to stop wearing her gloves.  She was fine wearing shorts and not pants.  She didn’t care about wearing a coat.  But she refused to go anywhere without gloves.  She wore them to preschool.  She wore them to the store.  She wore them to grandma and grandpa’s house,even as the temperatures rose into the 80s.

Then one day, we were going to see my parents and a glove was missing.  She went ballistic.  I looked everywhere for it, just to get the screams to stop.  Finally, I said we were leaving without it.  And hell came to our house.  She refused to walk to the car.  And my stubborn streak came out.  I put Mandy in the car and picked Casey up, kicking and screaming.   I am lucky no one called the police on me – she sounded like someone was beating her.

I tried to get her in her car seat.  She gave me a good head butt and I lost my temper.  I calmly held her back to snap the buckles and told her she would  never, ever wear gloves again.  Not something I am proud of – please don’t do this to your little one.  Now, I understand her need for routine.  I understand autism more.  At the time, I had just had it.  I was done.  She screamed all the way to my parents.  She screamed there and tried to run back to the car.

Then she stopped.  And I cried because only a terrible mom would tell their child she would  never get to do something she obviously needed to do.  Today, I would see autism.  28 years ago, I saw a stubborn child with quirks that needed to change.

But – those two incidents helped find a diagnosis for her later that summer.  Both were important details to help her neurologist help us.  I hope more parents are aware of the signs of autism in young children and look for help instead of waiting.  Early intervention is so important!  Don’t be embarrassed – and don’t let anyone tell you to ignore your gut feelings.  If you sense something isn’t right, find help.  If the first person won’t help, find another.

You will have to be as strong-willed as our kids with autism.  You will have to stand up for your kids.  Don’t be intimidated by people with lots of letters after their name.  They may have years of schooling – but you are the expert on your child.  Make them listen or go somewhere else.

And try to be patient at your child’s routines.  They can drive me batty at times, but I try to remember to leave us enough time to hop through doors, pat the socks, fairy dance through the kitchen and latch all the doors.  Some routines may last for years (folding socks, anyone?) but others may disappear as quickly as they started.

We all love our routines – they just take that love to a new level!  🙂