Category: parenting and autism

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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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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!  🙂

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Autism and Prom – Deep Thoughts and Fun

Autism and Prom - Deep Thoughts and Fun

Casey looks forward to Prom night for weeks. This year, she went dress shopping with Mandy, Grandma Rose and me. She said she wanted a purple dress for weeks and I hoped we could find one that she liked. After several stores, she grabbed a navy blue dress with a yellow jacket. I reminded her about wanting a purple one – I just had a feeling she would get home and ask for a purple dress. (You all know how her autism causes her to stick with original plans! 🙂 ) She insisted and we found yellow shoes to go with it. She was thrilled all the way home.

Rob said “yes, please, no fanks” to a new shirt. I would love to see him really dress up, but that’s not something he could handle right now. So, I let him wear black windpants and a new shirt – with sleeves. He is willing to put the shirt on (I buy a t-shirt type shirt – nothing too uncomfortable) for pictures, but once he decides he has posed for enough (and that’s always before Casey has decided enough have been taken! 🙂 ) he wants his old shirt on. This year, I had Mandy put it in her car – just in case.

Mandy helped Casey with hair and make-up. Casey is so serious for this – everything has to be done that was done the year before. Rob wants to be left alone until he has to put his shirt on. We took so many pictures and he is smiling in many of them. Mandy made him laugh – he can never get enough of her. 🙂

We danced for a long while. Rob joined us a few times, but the twirling lights are just too tempting. He loves to lay on his back on the bleachers and just watch the lights. Casey has finally stopped her running/leaping and if she isn’t dancing with Mandy or me, she just stands and watches the other dancers. Mandy needed to leave after an hour or so and I sat down to watch, too.

It had been a long day and I was tired. I was happy to be there – happy that the kids were having fun – happy to be dressed up with all of the kids. But – I was sad, too. It’s hard to watch a big group of people having fun and dancing with their friends when mine choose to stay on the edges. I know Rob doesn’t want to be in the group – but maybe he does want to fist bump a friend like he saw others doing. Maybe he sits on the bleachers because dancing with his mom or sisters is not “cool.” Maybe he would like to line dance with the guys he knows that were there. Maybe… maybe… maybe….

Casey stays near the edge of the dancers and never takes her eyes off of them. I wonder what she is thinking. Is she wishing she was dancing with a guy? (Tho, based on what happened the last time a guy tried to get her to dance, I’m going to say that’s probably a no! 🙂 ) Is she wondering how to join the group? Is she trying to learn the dances? Does she feel left out? I don’t know how to help her. No one else there has their mom dancing with them.

Those that need help have staff with them. (I saw so many amazing staff people that night – thank you for everything you do!! It’s obvious that they love what they do!) They don’t have mom – and I’m sure being with a pretty staff person is much cooler than being with mom! But maybe Casey and Rob don’t even think about things like that. And I feel even more tired. I’m ready to go home and be done with the thoughts.

Then Rob jumps up and comes to me. He leans close and grabs my phone, finds the camera and makes faces for selfies with mom. Though he isn’t laughing in the pictures, he giggles every time he sees the goofy faces he makes. And I know that if he was feeling like being with mom isn’t cool, he wouldn’t be hugging me to do more pictures. 🙂

I wish autism wasn’t so confusing. I wish I knew what they were thinking and feeling. I wish I didn’t have deep thoughts during a fun time. I wish I wasn’t so tired at times. I wish …. I wish… I wish.

We all have those wishes, don’t we? Maybe it’s wishing for a friend for your child. Or for your child to try a new food. Or for an awesome teacher for your child. Or for a job your child enjoys. Or for the money to try a new therapy. And the list goes on and on.

I suppose it’s good that we have those wishes. As long as we can dream for our kids, we will keep reaching for the stars with them, for them. We will find the strength to fight for what they need – just so they might reach those dreams. Once we stop wishing, even for our own lives, we stop growing. We stay in the same spot. No one can be happy without those wishes and dreams.

So please, keep those dreams for your child. You have no idea what the future may hold!

And – Casey and Rob both said the prom was fun. 🙂

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Autism and a Wonderful Mother’s Day!

Autism and Wonderful Mother's Day

Happy Mother’s Day to all the amazing autism moms – and dads and grandparents and everyone else who loves and supports people with autism and other special needs.

I’ve been an autism mom for 31 years. True, I didn’t actually know it until Casey was four, but I can look at the video from her first birthday party and see the signs as clear as day – if I had only known what I was seeing. Her need for routine – her preference to do her own thing rather then interact with me – her ability to say the alphabet and sing whole sings, but still not be able to say ma-ma. Yep, it’s all there.

But I don’t feel guilty about not seeing the autism earlier. In 1989, autism wasn’t in the news. The movie Rainman was popular, but I still didn’t see autism in Casey. There were no families with autism in our community. Even when she finally got diagnosed, there was only one other little girl near us. Today, I can’t guess how many families have autism in their lives in our area.

So what has being an autism mom taught me?

  1. Being a mom is hard at times. It doesn’t matter if autism is involved or not – some days are just hard. And some days with autism are terrible. Sometimes, it’s weeks with autism that are terrible. But – joy always finds its way back to us.
  2. It’s a lonely life at times. Many people don’t understand the special challenges we face and that’s okay. I don’t understand the challenges of other moms, either. I don’t understand the constant running of children from sports to dance to music. I don’t understand spending every evening of the week going somewhere for something. I love spending most of my evenings with the kids – walking, crafting, swinging on the porch swing and watching the clouds. But, loneliness is part of any family with special needs – and never feel guilty if you do feel it at times. Sometimes, you just want to go be with other moms and think about anything besides autism (I got to do that the other night – it was amazing!! 🙂 )
  3. Routines can be good. Oh yeah – I get tired of them. I get tired of having to stop whatever I’m doing every evening at 7:30 and start helping with bath/shower. I get tired of having to do things a certain way. But – on the other hand, it’s a lot less thinking on my part. I seem to turn on auto-pilot and just go with it. (Course, that also means that if I’m asked something during that time, I may not remember what anyone said to me! 🙂 ) Sometimes, especially when I’m tired, routines are good – no thinking on my part. My body knows what it is supposed to do and we go with it.
  4. Little things truly do not matter. I know – it’s easy to say, but when there are so many more important things to worry about, who cares if the coffee table is dusty? If someone complains, hand them a dust rag and tell them to have at it. 🙂 I know I don’t worry or stress about a lot of things other people do. And I worry about things other parents don’t think about very often – are the kids safe? who will be with them when I’m gone? Should I try to change meds? Do they want friends or do they even think about it? Do they know they feel things differently? (They both know they have autism, but I’m not sure whether that matters to them.)
  5. On the other hand, some little things matter a LOT! When Rob tries a new food or wears a new shirt. When Casey goes to volunteer somewhere new – and remembers to smile and say Hi and Thank you! When Rob leans on me for a hug. When Casey looks at me with that special sweet smile of hers. When Rob messages someone. When they tease each other like typical siblings do. When they look out for each other when we go places. When Casey checks on Rob constantly when he is sick – or when she thinks he has a “boo-boo” as she calls it. When Rob asks to see Mandy or Cory or Grandpa or Grandma. The smallest step forward is cause for celebration!
  6. I am strong. And that’s good and bad. I can stand up for myself and the kids – but it also makes it harder for me to ask for help when I need it. I feel like I’m letting the people who think I’m strong down when I ask for help. You are stronger than you think, too – trust me – I know this without even knowing you. Every day that you get up and start the same routine again, you prove you are strong. When you cry over the screams of your child and you are so tired you can’t think straight and you feel in your heart you just can NOT do this anymore, you are strong. Give yourself a break to cry and take deep breaths. We’ve all been there (and anyone who says they haven’t been that low are lying through their teeth!). If I can do it, you can, too!
  7. Autism has brought me so many amazing opportunities that I would have never had. I’ve met so many awesome people who keep me strong when I need it. I’ve gotten to speak to groups of people about autism and our circus. We’ve opened eyes to a new world for many people – and we blasted our way through a school system that really wasn’t prepared for Casey. We made it a little easier for the families that followed us, I hope.
  8. Laughing is better than crying. Oh – I’ve cried – more than many people know, but really, laughing is so much better. Most of the things we lived through sound funny, now. (Some don’t – some things will never be funny, but we made it!) The apples and the koolaid – jumping off the roof – hopping through doors – flipping light switches. Some days, I have to laugh or I would go crazy, I’m sure. I can’t change them (and don’t want to!) so I might as well tighten my abs and laugh at how silly they are sometimes.

These are just a few things being a mom have taught me. It also showed me what true, selfless love is. Casey, Mandy, Rob and Cory know that I would do anything for them – they are the most important people in my life. I see their flaws, as they see mine, and we love each other anyway. It’s true acceptance of who I am. I don’t have to be anyone except me with them – silly, serious, stubborn me. And that’s an amazing feeling.

So Happy Mother’s Day to all of you! My wish for each of you is a hug (in whatever form that takes in your home!) a few minutes of peace and maybe a smile from that awesome, amazing, autism child you have. Enjoy your day! You deserve it!

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Autism and the Routines we Live With

Autism and the Routines we Live With

I’ve been trying to decide all day what I want to write about autism this week. Usually, an idea pops in my head and I run with it, but this week, I have so much going around my brain that nothing is sticking. Until Rob came in to turn on the other lamp in the living room – now I know! 🙂

I’ve told you before about some of the routines we live with. Many are obsessive/compulsive – others are just the way Casey or Rob think life should be.

Rob seems to have more of these quirky “needs” than Casey, but last night, one of her quirks almost caused a major meltdown. She got out of the bath and was thrilled to have a cupcake and ice cream for a snack. (Thanks, Kenzie!) She was giggling – and then she wasn’t. She slapped her iPad and kicked her feet. I knew she was getting mad, so I calmly asked what she needed. She couldn’t or wouldn’t tell me. I was tired and not in the mood to deal with a screaming meltdown.

I kept asking and talking to her about what she would be doing this week. Finally, I said I had something to write on her calendar and she took off to get it. When she brought it to me, she pointed to today. Nothing was written on it – and I knew instantly what the problem was. She was going to Anna’s dance recital with my mom and I hadn’t written it on her calendar! I have no idea how this happened as she religiously brings that calendar to me. As soon as I wrote dance recital on it, she was happy and giggling again.

That just shows how quickly moods can change around here. It’s exhausting some days to try and think of everything they need to have done so they can feel safe and happy. Her meltdowns are few and far between now, but when they occur, it’s ugly. Thankfully, she usually gives me a warning that she’s getting upset before she is out of control – but not always.

Rob firmly believes that if the front door is open (which can only happen after a certain point in his mind) for fresh air, the ceiling fans in the living room, dining room and kitchen have to be on. And if one lamp is on in the living room, they both have to be. If the ceiling fan is on at Grandma and Grandpa’s house in the living room, the one in the dining room must be, too. I can try to get him to turn one off, but it causes him so much anxiety, it’s just not worth it.

He has to wear certain pants and shirts together. She mismatches whatever she wants to wear that day. (some days, I make her change. Other times, I figure she needs to be able to make some decisions on her own.) Pills and snacks need to be waiting when they get home from Hopewell and when they get out of the shower. It’s funny, but sitting here writing, it’s hard to remember what exactly some of our routines are. I do them automatically and without thinking about them.

Tonight is another example of their need for routine. Since Casey took a bath before she went to the dance recital, I told her she could just put PJs on instead of taking a bath. Nope – she has to have a bath. I said okay, but we don’t need to wash your hair so don’t get it wet. Yeah – that didn’t go over. And Rob kept asking about her taking a bath, because he only takes a shower after her. Honestly, if I tell him he needs to go first, he will, but he rushes through it so he can see if she is going to take her bath.

Every family who lives with autism knows about the need for routines. People look at me like I’m crazy at times because I hate to get the kids home much after 8. They are adults – I get that, but if we get home too late, they won’t relax and go to sleep. And my late evening turns into none of us sleeping until 1 or 2 in the morning. Sorry, folks, an extra 30 minutes or hour with friends is not worth that to me. I’m not spoiling the kids – nor am I letting them “rule” me. I am simply doing what is best for us. You don’t have to like it, but kindly keep your negative comments to yourself.

Our routines are such a big part of us. Like I said, every family with autism knows exactly what I mean and many others try to understand. It’s so hard to explain to people who don’t live with autism just what our lives are like. I can’t honestly say I know what my autism mom friends lives are like. I can picture some of it, but their children are so different than Casey and Rob, I can’t know exactly. I can, however, sympathize and laugh with them. (Yes, we laugh at our lives and our kids – we are not being insensitive to their needs – we are letting off steam with people who know how crazy nuts our lives can be!)

Without our routines, Casey and Rob (and I!) would be extremely anxious and upset. We do things that appear odd to others because we need to. Autism is funny that way. 🙂 Once we find a routine that works, it’s nearly impossible for me to bring myself to change it. I wait until one of the kids decides it needs changed and then we find a new one.

Autism is definitely never boring! 🙂

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Autism and Hope – Never Lose It!

Autism and Hope

Anyone that follows our Facebook page may have seen that Casey sang in our county board of developmental disabilities talent show a few evenings ago. She won one of the awards – she was happy about that, but for her, just the singing is enough. And that she got a milkshake after! 🙂

She was so excited that she got to buy a new shirt to wear. That night, she couldn’t stop giggling at supper and kept looking at me for the signal that it was time to take a bath and get ready to go. We had to blow her hair dry and use “fluffy” stuff (mousse) in it. She couldn’t stand still from excitement. Even Rob was excited about going!

When we got to the school, Rob chose their seats and Casey bounced in her seat to watch people come in. She was going to be the last one to sing before intermission. Mandy and Cory came and she bounced harder. (And Rob had to jump up and rub Cory’s face – he had shaved his beard! 🙂 I’m still waiting for Rob to tell me he wants his face like Cory’s!

I was taking pictures for the newspaper, so I wasn’t sitting with the kids. As I watched the other performers, I kept checking on them and they were always looking right at the stage and enjoying the music. When Casey’s turn came, she jumped up and ran to the stage with a big smile on her face. She grabbed the microphone and looked at me as she waited for the music. As soon as it started, she started swaying back and forth and got really serious. This year, she really belted out her song so everyone could hear.

It’s funny. She loves singing on stage but those who know her well can see her nervousness. She doesn’t know what to do with her free hand and it moves constantly from rubbing her shirt to playing with the snap of her pants to going in her pocket. She loves what she is doing, but she is scared, too. And is brave enough to do something that scares her because she loves it so much. I wonder how many “typical” people can say that? How many of us really want to try something we love, but we are afraid to fail so we never try? Those performers that night were afraid – and they did it, anyway. They had all some type of disability, but they conquered their fears to try. We could learn something from them!

When she was finished, she didn’t wait for the applause. She smiled a beautiful smile, ran down from the stage and back to her seat – still excited and happy. And thinking of the milkshake she was sure she would get when it was over.

When they started announcing the winners, she was still smiling. I truly don’t know if she cares about winning (I know some of the performers do) but she was happy to go get her award and show everyone. She loved being in pictures and couldn’t stop smiling. I still think some of that smile was knowing that a milkshake was coming.

Later that night, after we had all settled down, I thought how far she had come. I know I tell you this often, but never, ever give up on your children. I don’t care how old they are or how severely they are affected by autism. You never know where they might go!

Who could have known that the little girl who screamed for hours at a time and beat her head on everything would one day be standing on stage singing a song she loved? The little girl who couldn’t sit in a gym with a crowd of people was now sitting in a huge crowd. That sweet child who couldn’t wait 10 seconds for help without screaming sat for 45 minutes waiting her turn to sing. The child who had only a few words was singing. (Though, to be honest, she was singing as a toddler, even when she couldn’t say Ma-Ma.)

And Rob…. he hates crowds. As a child, he had to have head phones on to be near crowds of people. He couldn’t wait for things to start as his anxiety would get to be too much and he would run away. He hated flashing lights and loud music. He paid little attention to Casey (even thought he followed Mandy everywhere – and still does! 🙂 ) He is learning to message people. He wanted to be there for Casey – to cheer her on – to hear her sing.

And I cried happy tears remembering. I remember the dark days when I was sure my life would be nothing but screams and bruises and anxiety and sleepless nights. I didn’t really have the time or energy to dream for either of them. I was too busy dealing with schools and IEP’s and therapies and everything else life threw at us. I didn’t give much thought to the future – or at least. not much farther than the next year’s IEP.

I know that your child may never sing on stage or sit in a crowd. (Honestly, Rob only did this for Casey!) He or she may not have a picture in an art show. But – your child may be the one to write the music – or the book – or the movie. Or they may the one to design a new bridge or a computer game. The point is – you don’t know what the future may hold. It’s hard to look ahead when right now is exhausting you. I get that. I really do.

I’m just asking you to not give up. Dream for your child when you can. Plan for your child every day. Sometimes, it’ll be one small step forward and three steps back. I get it. Don’t lose your hope – your faith. I’ve been told before to “fake it till you feel it” and it does work. Make yourself dream and feel hopeful. And maybe one day your child will be the one singing “You’ve Got to Stand for Something” in front of her family and friends. 🙂

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Autism, God and Faith

Autism, God and Faith

Casey and Rob went to a respite time this weekend so I was able to go to church with Mom and Dad. Casey was excited because she asked me Friday about getting a palm today and I was happy to give it to her when we got home from camp. But, as I was listening to the pastor, I remembered a book I read a few years ago about autism and God. I don’t know how you feel about God and faith and I am in no way trying to convince you to think like me. I am only sharing – just like always. 🙂

I read a book by a mom who was devastated because her child with autism wouldn’t be allowed to go to Heaven. Mind you, I had never considered my kids wouldn’t be able to go to Heaven. They don’t understand “sin” and both, especially Casey, talk about God, Jesus and Heaven. Rob focuses more on Baby Jesus and on his grandparents in Heaven.

Anyway, this mom wrote that because her child couldn’t confess her sins and ask God to forgive her, she would never be allowed in Heaven – she wasn’t saved. Honestly, I thought the mom was a nutcase, but it still bothered me a little that someone could think my kids are somehow less than good Christians, simply because they couldn’t speak like other people do. I tossed the book in the trash and hoped that the mom could find peace somehow.

Listening to the pastor talk about salvation today, I started thinking again about the people who can’t communicate and how many of the people in the church were talking about asking for forgiveness and salvation. I wondered if they would believe Casey and Rob would see them in Heaven – even if they couldn’t ask for salvation. I believed most would, but I’m also a realist and know that some people are set in their ways.

Several years ago, I wanted to get Baptized and have all three of the kids Baptized with me. In the church we went to at the time, Baptisms were always done in front of the congregation on Sunday mornings. I knew Rob would never be able to do that and even had doubts about Casey. I also knew there were people who wouldn’t believe it was a “real” Baptism because the kids weren’t able to actively participate.

I worked at the church at the time and approached the pastor about what could be done. Pastor Coralee simply said “We’ll do it however will make them comfortable.” And that was that. Mandy and I had several conversations with Pastor Coralee about our beliefs and I bought a children’s book to read to Casey and Rob about Baptism and what it meant.

Rob just thought we were going to take a shower at church (because we were going to be “clean”) and Casey didn’t say much. We decided to have an evening ceremony and to surprise my parents. They had no idea what we were doing that night – only that I had a meeting I needed them to be at. We also invited the kids’ “other” grandparents, Rick and Lyn. They knew what was happening. I ordered cupcakes and we made a real celebration of the event.

Casey and Rob were fine with getting water on their foreheads and Casey even said she was clean when it was done. I think everyone had tears in their eyes – we definitely shocked my parents, who arrived with pens and notebooks to take notes during the “meeting.” 🙂

In the days after our Baptism, I shared with Pastor Coralee the book I had read and asked what she thought. She knows the Bible forwards and backwards and I knew she would never lie to me about what she thought. I asked if she thought the kids would be kept from Heaven because they couldn’t ask God for forgiveness.

She sat quietly a minute and then simply said, “God made Casey and Rob in the image He wanted them. Why would He punish them for being who He wanted them to be by keeping them from joining Him in Heaven?” That was exactly how I felt, but it was wonderful to hear our pastor shared my feelings. 🙂 I hope she knows how happy her words made me that day. I doubt she even remembers it, but I do.

For many of us, worrying about Heaven is not something we have much time for. There are behaviors to deal with and doctors and therapies and school and insurance companies and groceries and jobs and….. the list goes on. But, if the thought ever crossed your mind about your child, remember what our pastor said. Your child is exactly as God wanted him/her to be!

Again, I am no way saying you need to share our faith. There were many times that the only prayer I could manage was “Please, God” before I broke into tears. But I know He heard what I couldn’t say and He’s given me a lot of strength over the years. God knows what is in your heart, even when you can’t say the words. You need to believe however feels right to you – whatever gives you the strength you need to take care of you and your family.

Autism is tough at times. You need to lean on others, whether it is friends, family or God. Let yourself ask for help when you need it. 🙂