Tag: autism parties

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Autism and a Christmas Party

Autism and a Christmas Party

This post is going to be a little different, as usually I’m talking to families or professionals that are with people with special needs every day. This post is for those who have little to no experience with people with autism. Please – print and share this with anyone you may encounter this holiday season!

While Christmas is a very magical time for most people, for those with autism, it can be even more difficult to handle the day to day stress and anxiety. Unlike what many people believe, people with autism do enjoy the holidays – on their terms. They may not be able to tell you what they want for Christmas or tell you what they would like to do, but they want to be a part of the excitement, too. Again, on their terms.

Some may enjoy a huge, loud party with all kinds of food and plenty of people to talk to. Casey and Rob would hate that. They much prefer small gatherings with people they know and are comfortable with. My point is – just because my kids would hate it, doesn’t mean their friend Brandon would. Tyler and Adam like to be the life of the party, while Riley prefers smaller groups. There is no one size fits all – but, please… invite us. We don’t want to be ignored. We may not be able to come or stay long, but you have no idea how happy we are just to be included.

Going to stores can be especially tough during this time of year. The stores are crowded – things are moved around – the music is loud. Sensory issues can can an overload and a meltdown. We don’t need your laughs or your negative comments. Either be kind or get away from us. Trust me – nothing you say will surprise us autism parents. We’ve heard it all. Just remember – our patience is saved for our children, not for you.

Excitement may be hard for people with autism to handle. They may rock or hum or flap their hands or squeal. Be happy and enjoy their excitement – you don’t need to be concerned. Anxiety may be higher and cause more calming behaviors, such as rocking or squeezing their hands or cheeks (Rob used to squeeze his chin as hard as he could when he got anxious. Now he flips at his ears.) Again, you don’t need to worry. Ask if they need help, if you can be kind.

Be understanding if we come to your party and bring our own food. Casey will eat almost anything. Rob won’t. Riley won’t. Tyler and Brandon aren’t as picky. Adam only likes certain things. We aren’t saying we don’t like your food choices by bringing our own food. We are simply hoping that if our children have what they need, we might be able to enjoy your food and a few minutes to eat it.

And – understand if we come to your party looking like we are moving in. We may have a favorite blanket or stuffed animal, an iPad, coloring books, headphones – you name it and we may be packing it. We are not spoiling our kids – we just want them to enjoy themselves in the hopes that we can have fun, too. If you have a spare room that we could use as a quiet space, that would be amazing.

And, please, please, understand that many of our kids believe in Santa forever. Don’t spoil that magic for them. Casey believes in Santa and the Easter Bunny. Rob will talk about both, but whether he truly believes in them or goes along for Casey’s sake, I don’t know.

On last thing – we know our lives can be confusing to those who don’t live them. If you have a question or concern, please ask us. It may be hard to talk about at times, but we would much rather be asked questions than to be ignored. Learn more about autism. Discover how amazing people with autism are. Accept us and you will find the most wonderful love and joy.

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Autism and Mom Guilt

Autism and Mom Guilt
Autism and Mom Guilt

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

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

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

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

I still feel guilty.

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

Today, I just don’t want to.

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

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

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

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

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

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

I hate mom (or dad!) guilt.

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

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

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

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Autism and Crazy Christmas Tension

Autism and Crazy, Christmas Tension

When Casey was little, December was never a good month for her. For years, she started acting out and having meltdowns near the first part of the month that lasted until Christmas. I could never understand – we stayed with our same routine. We didn’t go overboard with activities that she couldn’t handle (while all the time making sure Mandy got to do what she wanted during the holidays.) I love Christmas, but I dreaded the month for years.

She finally started relaxing, a little, in her mid teens, but she still has an exact list of what she wants to happen and she will remind me of that list often. When she was in her early 20’s, I finally learned why December was so hard for her all those years ago and it about broke my heart.

Santa. She was never sure she had been “good” enough for Santa to bring her presents. She knew her behaviors weren’t acceptable – she knew I was upset. She knew she shouldn’t scream and beat her head. And she knew Santa wouldn’t like it. So she worried that Santa wouldn’t bring her any presents because she was “bad.” (Let me say right now – I NEVER called her bad for her meltdowns!! I was stressed and I cried about it, but I never told her she was bad). I could still cry thinking about all those years that my sweet little girl worried about Santa not being happy with her – and not being able to tell anyone what was wrong, so she screamed. She ran from teachers. She beat her head on walls. The month seemed endless at times.

I only found out what had happened because of Casey’s incredible memory. We were reading a Christmas book one year and she said, “bad.” I told her she wasn’t bad. She looked deep in my eyes and said, “Screaming bad!” I told her that screaming hurt my ears and she needed to tell me what was wrong instead of scream. Still looking so serious, she said “Screaming bad, no Santa!” and I finally knew – ten years later why she had such a hard time in December.

Everyone, everywhere is telling kids to be good or Santa won’t come. Imagine how you would feel if you thought you were a bad kid – that your sister and brother were good, because they didn’t scream – and you couldn’t tell anyone that you were scared Santa wouldn’t like you? How sad. I still get choked up thinking about that. What could I have done differently? What could I have said that would have alleviated her fears? And why didn’t I know it then? (nothing like a nice load of mom guilt for the holidays, right? UGH!)

I’ve let go of the guilt now. I still wish I had known, but I can’t change it. Casey loves the entire holiday season now, so she wasn’t scarred for life over her misconceptions of Santa. But, still…. sometimes, autism sucks.

Casey is well into her list of needs for Christmas. She has reminded me about 100 times since noon yesterday that she wants to go see Christmas lights tomorrow. (WHY did I tell her I was thinking about going???) We had a long discussion about where we were going to go (It’s posted on our Facebook page) and what we would see. She is excited – another thing to be checked off her list of “must-do’s” for the season.

She watched me wrap a few presents earlier today. I asked if she was going to make her presents this year or buy them. “Make.” ok – what do you want to make? “Ornaments.” Ok – do you want to paint them or use foam pieces? “Paint.” Ok – I’ll get you some and you can make them. “Buy!” Yes, I will buy some. “NO! BUY!” You want to buy your presents? “Yes. Shopping.” OK – we’ll go shopping. “Paint?” Casey – are you going to buy or make your presents? “YES!” and she giggled and danced out of the room. I have no clue what she wants to do.

Meanwhile, Rob heard the conversation and said “Cory? Mandy?” Yes, Rob you can buy them presents. He laughed and went back to his iPad. He keeps life simple. He won’t remind me constantly that we haven’t shopped, yet. He’ll go whenever I’m ready. He’ll wrap when we have time. He may or may not tell people what he got them. 🙂 He’ll go see lights and the only thing he’ll remind me about is that he would like a snack from somewhere.

Casey is laying on the couch now, giggling about the Christmas dance next week. She looked at me and reminded me that she needed to wear her light up necklace and head band. And a Christmas shirt and Christmas socks. I told her I wouldn’t forget (like she would let me!) and she went back to her iPad. Another thing on her list that we have to do every year.

The holidays may be hard for your child, too. You may see more behaviors. You may hear more screams or less sleeping or their diet may change. While you are looking for possible reasons why, look outside the box – sometimes, way outside the box. Whatever is bothering your child may have nothing to do with Christmas at all. If I’ve learned nothing else from 30 years of living with autism it’s to expect the unexpected and to know that nothing is too far outside the box to be true.

I’ve tried some weird ideas to help the kids. Some worked, some didn’t. The point is – be open to trying the strangest things. If your child can’t tell you the problem, how can you possibly know the answer? Just like with Casey and Santa – I never guessed that was her problem. Don’t limit yourself – you never know what might work for your child!

Casey is back. She just reminded me that I told her we could do a Christmas craft today (and yeah – I completely forgot! 🙁 ) She also reminded me that we are going to see Christmas lights tomorrow and see more on Christmas Eve and that we are making cookies with Mandy on the 22nd. Oh – and the dance is the 19th. Time to distract her with pretty papers before she really gets going on her list of plans for the holidays!

Have a great week, everyone! Take time to breathe and enjoy the peace of the season!

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Autism and Colorful Traditions

Autism and Colorful Traditions

The house is decorated. A cookie baking day is planned. Most of the shopping is done and I’m in the process of making my Christmas cards. It’s time to sit back, relax and enjoy the pretty tree lights. And, time to think about how autism makes our Christmas different – and to celebrate those differences!

I saw pictures this morning of my cousin, Judy’s, house. It’s absolutely beautiful. Everything is coordinated and perfectly laid out. It’s the Christmas home of my dreams. I saw pictures that another friend had posted on Facebook of two beautiful trees. (By the way, I want to see both houses in person! So beautiful!)

I’m not saying our trees aren’t beautiful, because they are – to us. I decided this year to do both trees in the dining room bright colored and keep all the decorations in there the same. It mostly worked out that way – until Casey insisted that I change the table runner because she wanted our usual place mats. It’s not a big deal, but… It’s not what I wanted. 🙂

Casey and Rob like the house to be decorated the same every year. Some things can change, but others can’t. The picture with this post shows one thing that Rob insists on. Many, many years ago, he got this Teenage Mutant Ninja Turtle in a McDonald’s happy meal and decided that Baby Jesus needed a very special guard. Every year since then, there’s the turtle. This year, when I put the nativity out, I tucked the turtle in the stable (cause – hey – he’s still guarding the baby, right??). Yeah…. nope. As soon as Rob saw the nativity without the turtle, he started rocking and knocked poor Joseph over in his hurry to rescue the turtle and place him properly. And he checks every time he walks by to be sure I didn’t hide him again.

Casey has already started checking things off in her mind that have to be done as part of Christmas. She attended a performance of The Nutcracker yesterday with my mom and dad. My niece, Anna, was the Snow Queen (and other parts) and Casey said she was pretty and she danced fast. 🙂 And that she went to Steak and Shake for supper. We went to the Christmas parade and waved to Santa.

Casey will start reminding me she needs to go shopping and that we need to go somewhere to look at lights and we need to go to a dance and wrap presents and… The list goes on. Rob enjoys those things, too, but he takes it as it comes. He’s not pushy. 🙂

The tree in Casey’s room is all blue and purple ornaments, plus a few that she made or received (I have no idea what the criteria is for an ornament to be allowed on that tree – I tried to give her more and she strongly said NO!) Rob’s tree still has the unbreakable satin ornaments that he has used since he was a little boy. I found the cutest ornaments for him, but he refused them. Even his Wizard of Oz ornaments can’t be on that tree. (frankly, that little tree has seen better days, but when I brought a new tree in for him to use, he ran to the basement to get “his” tree.) It’s a sad little tree, but he is so happy with it! And that’s truly all that matters.

Our Christmas CDs are in the car (Toby Keith and Alabama are their preferred ones) and Casey will remind me when we leave later that it’s December and time for that music. (She has also reminded me 8 – 10 times that today is Tracie’s birthday! 🙂 ) She has Christmas sweatshirts ready to wear all month (but not on Christmas Day… she often has socks for a different holiday on that day, too! :0 ).

The presents they want from Santa are different than most people would imagine, but that’s okay. Santa knows what they really want. Please be careful when you talk about Santa around people with special needs. Casey is an adult, but she still believes in him. I am always very careful and if someone says something, I always make up a story so that belief isn’t ruined. Rob will talk about Santa, but he always has this look when he does. I’m not sure he believes, but he won’t ruin it for Casey. (We saw the Easter Bunny in the mall last spring. She ran up to him and swayed back and forth as she smiled. Rob looked at me and said “man” and grinned.)

Rob will find index cards and playing cards under the tree and a huge box of crayons. Casey will be the proud keeper of yet another Grover, Big Bird, Ernie and Bert. There won’t be any fancy gadgets or expensive clothes. There won’t be gift cards or jewelry. There will be coloring books, Legos, signs, Sesame Street DVDs and other toys. There won’t be many smiles, as both of them are very serious Christmas morning. The happy giggles come later and that’s okay, too. I know they are happy, even if they can’t tell me. Christmas magic is truly the best!

We may do Christmas differently, but that doesn’t change the love and magic of the season! We don’t go to a lot of parties. We don’t run ourselves ragged trying to do it all. We don’t spend more than we have to impress others. We spend lots of evenings in a dark living room with just the tree lights on and watching Christmas cartoons or movies. (Home Alone is their favorite!) We don’t overeat and we try to keep the same schedule as always. We all function better when our schedule stays close to usual. And we are happier with plenty of sleep! 🙂

Please, try to keep your routine as normal as possible. Your child (and you, I’m betting!) needs this. When you do attend an event, plan for what your child needs and don’t worry about what anyone else thinks. Start your own Christmas traditions and let go of what you imagine Christmas is supposed to look like. Decorate with Ninja Turtles and mixed up colors. Wear Halloween socks and Easter shirts (yep – that happened one year!). Include your child in whatever they are interested in but don’t take it personally if they don’t care about baking perfect cookies or wrapping the presents in matching paper.

Your child will enjoy Christmas on his or her own terms. You can’t make them enjoy the same things you do (do you enjoy everything everyone else does??). Let your child join in where they are comfortable and follow their lead for your traditions. You will all have a more relaxed and memorable Christmas!

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Autism and a Less Stressful, Fun Holiday Season

Autism and a Less Stressful, Fun Holiday Season

As I write this, Rob is repeating his “song” over and over. He has been at it for more than three hours so far with no end in sight. He didn’t feel well yesterday (he said his belly hurt, but also his throat 🙁 ) and I don’t know if he still doesn’t feel like himself or if he is just talking. I am fighting a cold and yesterday, Casey had a meltdown because she couldn’t find the shirt she wanted to wear. (She has decided that she will only wear a certain shirt on the weekends.) I’m feeling a little stressed without even thinking about the quickly approaching holidays.

I know you all feel it. The every day stress that comes from real life – without holidays! Illness, bills, jobs and the roller coaster of autism can cause anyone to want to scream, cry or just take a nap. (I’m feeling all three right now! 🙂 )

Here are my tips for a less stressful holiday. (You can do it! Honestly – I don’t stress about holidays – I love every minute. But – I have a very loving, close family and group of friends that love my kids just the way they are. It’s easier for me. 🙂 )

  1. Let go of the vision of a perfect holiday. A perfect holiday isn’t everyone sitting down at a table decorated with coordinating dinnerware and a perfectly cooked meal. It’s loud and loving and lots of laughing. Your perfect holiday won’t look like mine – and that’s great! My Thanksgiving will be a long walk in the morning, a long shower, a nap, reading and then supper with all of my kids, my brother and his family and my parents. (With a HUGE helping of my mom’s stuffing! 🙂 ) It will be Rob sitting at the island in their kitchen in “his” spot. Casey will sit in the dining room with the rest of us, but she won’t stay long. And that’s okay. They come and go as they need. Please, let your children do the same. Don’t let anyone tell you that they have to sit and visit with the group.
  2. Take food for your kids. If your child only eats certain foods, take it with you. Anyone who gets upset because you are doing this isn’t worth your time to explain sensory issues. Ignore them and enjoy your own meal. If it will be that big of a deal, host the party at your house where your child is happiest.
  3. Bring their comfort things. If your child needs headphones to block noise, bring them. If they need a comfort item, such as a blanket, bring it. You will have more fun if your child is relaxed. Again, ignore any comments.
  4. Make your own traditions. The traditions that we have won’t be like yours, but they make us happy. Do whatever makes your child/family happy. If you want to eat hamburgers and fries for a holiday dinner, do it. Make your own version of an Advent calendar. (We made paper chains and the kids got to rip off a link every day – it was a very visual reminder to when Santa was coming!) If skipping the huge meal on Thanksgiving would make your family happier, then skip it. Order a pizza and watch TV.
  5. Don’t stress about shopping! Don’t listen to the people who say your child is too “old” for toys or someone who says playing cards aren’t a real gift. Yes – they are, if that’s what the person loves. Casey and Rob are both getting toys and some odd gifts. I don’t care – they will be happy and excited on Christmas morning and I don’t have to stress over it.
  6. Rest!!! Yes – I said it. Stop trying to make your house picture perfect. Stop trying to wrap your gifts as if they were art projects. Stop making a million desserts that you don’t need. When your child sits down – you sit down, too. Sleep when your child does (and rest when they aren’t sleeping!) You can handle stress easier when you aren’t exhausted, too.
  7. Exercise! If you can’t get outside, make laps in your home. Anything to get you up and moving will help with stress. Dance around the kitchen while you cook. Whatever it takes to get moving. You will feel better.
  8. Avoid people who won’t accept your child. Yes – I said it and I mean it. If someone makes comments to you or your child or are just negative, stay away from them. You don’t owe anyone a visit or a meal. I don’t care if it is the holiday season – toxic people are not worth adding stress and pain to your life. Protect your child and yourself and stay away. It’s simply not worth it. Your most important job is to protect your child.

I’m sure some of you are thinking I make it sound too easy. I don’t mean that – it won’t be easy to avoid people or to deal with negative comments. You just have to think of your child and yourself first. Remember – those who judge don’t matter and those that matter don’t judge. (Thanks, Dr. Seuss! 🙂 )

I took the kids to the Christmas parade Friday night to officially start our holiday season. I was a little concerned about Rob as parades aren’t usually his thing, but he laughed and giggled through the whole thing. Casey was so excited to see Elmo, Cookie Monster and Santa – and he waved to her! She was bouncing in her seat! Happy holiday season to all! Eat, drink, rest and enjoy!

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Autism and a Very Happy Young Man

Autism and a Very Happy Young Man

Last week, Rob turned 27! I’m still having a little trouble processing that my baby boy is 27. 🙂 Thank you to everyone that posted a birthday greeting on our Facebook page. While he wasn’t as excited about them as Casey was, she and I enjoyed reading them. 🙂

Do birthdays ever make you stop and think about how far your child has come? I felt that so much the night before his birthday. I kept picturing my little guy in his constant ball caps (first Mickey Mouse, then M & M, then Jeggs, and then so many others.) He wore them for years – everywhere – even to sleep. He stopped for a while, then started wearing cowboy hats. (He still wears his cowboy hat to camp – not sure why. 🙂 )

I can picture him running around in shorts and no shirt – usually barefoot. He always had his green or blue cup close by and a truck or two. He loved their swing set and trampoline and could be wild on both. He was definitely my wild child – I’ve often said if he had been the first one, I’m not sure there would have been anymore! He was in the ER every six months for the first 4 years of his life – stitches, seizure, a bad fall (that earned him a helicopter ride to a children’s hospital) broken collarbone.

When Casey was in preschool, Mandy and Rob were always together. She could talk him into doing anything (and still can!) For proof of that, I think of pictures I have of both of them wearing my old prom dresses – she is 4, he is 3. And he has the happiest smile on his face as he looks at Mandy.

Rob never had the terrible meltdowns that Casey did. He had issues that she didn’t though. The noises at school caused him so much pain. His teacher let him wear hunter ear protection (they also gave him deep pressure on his head) and warned him of fire drills or other loud noises. His aide discovered he could answer questions while on a swing and the school district bought a platform swing for his classroom. He did spelling, math, reading – all sorts of subjects while swinging back and back.

We did have an issue with a bus driver. She was nervous about him being on the bus and he knew it. At one point, she stopped to let other students on the bus and he jumped off along a highway. She was terrified, but he did eventually (thanks to other students, I think) get back on and continue to school. From that day on, the district paid me mileage to drive him to school each morning. (He came home with his sisters, so there weren’t any issues.) The next year, and until he graduated, he rode the bus with no problems.

He had the same aide until he went to the junior high. He missed her and still talks about “My Beth.” Luckily, he had the same teachers that Casey did, so he was familiar with them and they knew him. He also followed the same plan as Casey and slowly transitioned to Hopewell during his Junior and Senior years of school.

It wasn’t always easy for him. He had tough moments, especially when he thought someone was upset with him. (He still does that) He has a terrible time with anxiety. It’s only been in the last year or so that he is interested in being away from home or trying new things. He is finally learning to try new foods. He still doesn’t trust new people easily. But, the list of things he has learned has been incredible! When I think of how far he has come, I could cry for that sweet little blonde boy. But – he has grown into an amazing young man who loves deeply, laughs often and fairy dances when he is excited! 🙂

His birthday started with his favorite doughnuts and me singing Happy Birthday (Ok – he may not have been thrilled with that! 🙂 ). He went to Hopewell and then had Long John Silver for supper with Mandy and Cory. Grandma and Grandpa came soon after and he happily opened his presents. He even read his cards!

He was thrilled to see money and a gift card from McDonald’s. And a sign from Mandy and Cory that says “Little Dude” (that’s what she calls him!) Plus two more metal signs for his collection and plenty of paper and cards to rip up. As soon as he was done opening presents, he ran to get a hammer and nails to hang up his signs. Then he got comfortable in his recliner to start ripping up paper.

I let him enjoy that for a while before I asked him to come and blow out his candles. I made stop sign out of cupcakes for him and left several cupcakes without icing for him. He ran back to his room as we had cake. It may not have looked like a typical birthday party, but it made him happy and that’s all that matters to me!

When you are planning parties for your children, don’t worry about what a party is supposed to look like – plan it to keep your child happy. If they don’t like big crowds, invite one child. If they don’t like gooey icing, have cupcakes without it. Choose presents that they enjoy (like construction paper and index cards to rip up!) instead of what you feel they should want. It’s hard – I know that. Rob only asked for a party one time in his life and rarely tells me anything he would like. Keep your focus on your child.

You may hate that they aren’t having big parties like your other children, but would they even enjoy it? If not, then don’t stress over it. Celebrate the special child you have and let go of what you think they should want. You will both be happier!

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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 and a Birthday Week

Autism and a Birthday Week

Casey loves birthdays. She loves to know everyone’s birthdays and can still tell me the birthdays of children in her preschool class! (thanks to her autism!) She hears someone’s birthday once and she doesn’t forget. It took me years (and sometimes, she still asks!) to get her to understand that we are not celebrating every birthday she knows, nor are we going to find those people and intrude on their celebrations.

As much as she loves other people’s birthday, nothing compares to the excitement she feels when it is HER day! She reminds me as soon as Mandy’s birthday is over in February that she is next. She doesn’t countdown – she just says “Casey will be 31 March 22.” Over and over… and she will make a list of what she wants. And where she wants to eat it. Everything must happen. This year, though, we saw that as excited as she is, she is willing for changes to happen.

My dad’s birthday is the day after hers and we have always had two celebrations. We wanted her to have her special day and even when we talked about combining them in other years, Casey wasn’t happy about it. Grandpa’s birthday was not the same day as hers and shouldn’t be celebrated on her day. (We always have her birthday party on her day – she can’t grasp doing it another day.) This year, she was okay with celebrating both together! It was a huge step for her!

She was a little concerned about how many candles we would need, as she said she needed 31 and Grandpa needed 74 (at which point Rob spoke up and said “105” and completely shocked me. He never talks about math and didn’t like it in school… this is just more proof they know more than they tell us and we should never doubt their abilities!). I told her we were absolutely not going to light 105 candles (though, now…. I kind of wish we did! 🙂 ) and she laughed. She has been okay with fewer candles on her cake for a few years – as long as she gets to blow them out and have everyone (including herself!) sing to her.

Another change this year was she decided she wanted “banilla pie with bananas” instead of cake! I was amazed she wanted pie instead of the traditional cake which usually has a Sesame Street character on it. I bought the ingredients for her pie (banana creme! lol) but was sure I would be making another trip to the store for cake stuff. She never changed her mind. She did keep reminding me that she wanted a new Ernie, summer PJ’s and money to go shopping. 🙂

She was up before dawn on her birthday. When I went to get her up, she bounced to me for a hug (WOW!) as I sang Happy Birthday to her. She had the sweetest smile on her face and couldn’t wait to start her day. They had her favorite doughnuts for breakfast and off to Hopewell.

As soon as they got home, she said she wanted McDonald’s for supper. I reminded her we could go anywhere (can you guess who didn’t really want that?? 😉 ) but she insisted. Mandy and Cory came for supper and then it was a waiting game until Grandma and Grandpa, Uncle Jeff, Aunt Angela, Lacey and Anna arrived. She was so happy to open presents – to find Sesame Street coloring books and books, summer PJ’s and money. Then…. Ernie!! She lit up when she saw how big he is and named him “Da Biggest Ernie” But, even better – Mandy and Cory bought her Elmo Fatheads (giant wall stickers) She wasn’t sure what they were at first, but was thrilled it was Elmo. Now he is all over her walls and she giggles when she thinks about that.

The funny thing is, once she had her pie (and a piece of Grandpa’s cake) she disappeared into her room. To her, her birthday was done. She didn’t care that her guests were still there, nor did she wait for good-byes from them. She had been running on excitement all day and she needed down time. She was happily folding socks as everyone left. Life is simply good.

I am still surprised that she was okay with sharing her party with Grandpa. (She did insist on seeing him on his birthday, which was no big deal. 🙂 ) I am surprised that Rob did that math. I am surprised that she asked for money to go shopping. I am completely in shock that she read every birthday wish she got on my personal Facebook page and our autism one. She carefully took my phone and slowly scrolled through them all. She loved seeing the GIF’s and the little pictures that people added to their comments. That was the first time she has ever shown any interest.

Autism constantly surprises me. Not always in as good of ways as this week, to be sure, but life is certainly never boring. Never, ever give up that your child will learn something new – that he/she will grow and change. You can’t possibly know the future. Keep your faith and enjoy every little surprise that comes your way.

By the way – Casey told me this morning that Grandpa’s birthday is all done… and it’s only 364 days (next year is Leap Year) until her birthday again and she will be 32. 🙂 🙂

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Autism and How to Survive (and Maybe Enjoy!) Holiday Parties

Autism and How to Survive (and Maybe Enjoy) Holiday Parties

One of the statements I hear most often is how people dread holiday parties when their children has autism.  I am lucky – my family understands and loves my kids.  Even with this support, there are still times I worry about going to family events.  (And I can hear my brother, now “Just chill!”)   I try to, but I overthink when I’m tired or stressed.

It was so  much harder when the kids were younger.  Their sensory issues (especially Rob’s) and her need for strict schedules caused more than a few stressful moments.  Some family members didn’t understand – some thought they could be disciplined enough to lose the autism.  (They don’t see those people anymore!)  Now, I still need to consider their sensory issues, Rob’s anxiety and her strict schedules, but it’s easier to handle.

When you are deciding whether to attend a party or not, I think the first thing to consider is how the people feel about your children.  This may not sound nice, but if you know the other party guests will not be accepting of your kids, you need to consider whether they will be kind to them or say cruel things.  Your first priority is always to protect your children from people like that.  Family or not – if someone is not kind to my kids, we stay away.  I don’t need that and neither do they.  I know it’s hard to do sometimes, but really, why would you want to be around someone who isn’t kind to your kids?  

If you choose not to go, simply tell the hostess you have other plans for that day.  Or, simply tell them the truth – that you think it would be better for your children if you not come.  Remember – anyone who loves you will understand.  And, if they don’t understand or get upset – they aren’t your friend.  You don’t  need that in your life.  That’s the thing to always remember – those who love you will understand, no matter what.

Once you decide to go, think about what you might need.  If you have a child who is a picky eater, bring food with you that they will like.  Explain to the hostess that your child has a special diet and that you bring food wherever you go.  It’s silly to me that if someone has a food allergy and brings their own food, no one thinks anything about it, but if they have sensory issues and need a special diet, people are insulted.

I suppose it is because unless you live with sensory issues and the problems they can cause, you simply can’t imagine how difficult life can be for anyone with them.  It’s impossible to understand that foods can make a person gag or have a meltdown if they are afraid they might be forced to eat something.  We have lived with sensory issues for so long, yet there are still times that I miss a clue that something is bothering Casey or Rob.  Especially noises – I don’t always hear what they do.

So pack snacks or a meal for your child.  Bring whatever utensils they may need to eat.  Feed them early if you need to or give them snacks throughout the party.  Do what you need to so your child can relax and you can enjoy the party, too.

Bring an iPad if your child enjoys that.  Yes, you may hear comments about using an electronic babysitter (usually from parents who give their child their phone or park them in front of the TV to keep them entertained!) but, again, this is about your child relaxing, not worrying about what others think.  This is to help your little one get through a party – and maybe giving you a few minutes to visit with other adults.

If your person with autism has trouble with noise, bring a pair of noise-canceling headphones.  Ask your hostess if there might be a dark, quiet room (or even a corner of a room) where your child can go to calm themselves if they start getting anxious from the crowd.  

Let your child wear whatever they are comfortable in.  Yes, it would be awesome if they were wearing a cute Christmas dress or outfit, but is it really worth it to have a screaming child because the clothes are not comfortable?  Nope, not at all.  Even if the party is a “dress-up” kind of party, let your child wear something they are happy in – or don’t bother to go because it’s not going to be a good evening.  You might be okay for a little while, but sooner or later, they will decide the clothes are too much.  You will be looking at a meltdown or a naked child running through the party.  (yep – been there, done that.  Three year old Casey once stripped to nothing at a family reunion because she wanted to play in the wading pool and refused to get her clothes wet, even though I told her it was fine.  She stepped in pool with clothes on and stripped before I could stop her.   🙂  )

If your child needs deep pressure to stay calm, bring a weighted blanket or sleeping bag with you.  Pack a bag of favorite toys or fidgets – even if your child is an adult!   Age doesn’t matter when you need something!   Let people think what they want.  Your child’s happiness is your goal – not to live by another person’s warped opinion.

Please, if you are having a party, invite the family with autism.  They may have to say no, but you have no idea how good it feels to be invited, even if you decide not to go.  Ask the family if there is anything you can do to help them enjoy the party.  Offer a quiet place for the person with autism to relax.  Consider their possible sensory issues as much as possible – leave the scented candles unlit, dim what lights you can.  You have can’t imagine how amazing it feels to know someone is willing to go the extra mile to make sure your child is able to attend a party!

I know how hard it is to decide to go to parties.  Like I said, I still doubt myself at times.  But – you can’t let autism always rule your life.  That isn’t fair to you or your child.  You will never know until you try – and you just might get a beautiful Christmas surprise.  Go and be ready to leave if you need, but give your child a chance to show you and everyone else what he/she can do!  Plan ahead and don’t worry about what others think.  You don’t need that stress.