Tag: autism holidays

Posted on

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!

Posted on

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!

Posted on

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!

Posted on

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!

Posted on

Autism and a Brand New Year

Autism and a Brand New Year

The end of a year is always a good time to think about where you have been, how far you have come and what you want in your life.

Where have I been? That’s a tough one. I’ve been stressed and angry to the point of tears. I’ve been so tired I can’t function. I’ve been stretched financially.

I’ve also been incredibly blessed. Blue came to live with us. Casey and Rob are making huge strides every day. I have a supportive, laughing, loving family. I have a best friend who more like a sister to me. This blog and our Facebook page are growing.

How far have we come? Farther than I could have ever imagined. Autism no longer defines me. It does shape us in many ways, but it’s not defining. (if that makes sense! ☺)

What do I want in my life? More chances to spread our story. To write a book. To be completely organized. To work out every day. To yoga more. More time with my brother. More time to craft and read. Less stress and tears. A plan to figure out how to do all of this without quitting my job. ☺

Casey and Rob always have such awesome perceptions that I don’t always think about, so I decided to ask them what they would like in 2019. (asking where they had been or how far they have come aren’t questions they would understand easily.)

When I asked Casey what she wanted from 2019, she said turkey and stuffing, to go to Grandma Rose and Grandpa Mack’s house, see Uncle Jeff and buy coloring books.

Rob wants to buy signs, go to McDonald’s, go swimming with Bob and Erin (aquatic therapy) and go to Salt Fork with Mandy and Cory.

He went to his room and came back. He wants to go hiking with Tracie and Casey added find a railroad tunnel with Tracie. (One of the state parks we hike at has a railroad tunnel we didn’t find last summer. ☺)

They didn’t worry about money, a better home or a better version of themselves. They wanted simple things that make them happy. A lesson we could all learn.

Every year, we seem to make resolutions to make ourselves better – lose weight, make more money, be this, be that. How many announce their resolution is to find simple joys? Let’s face it, sometimes, a life with autism is tough! Why add more stress trying to make improvements on you?

My resolutions this year are to find more laughs every day. To forgive people, if only to help me feel less stress. To hug more. To read on my porch swing. To praise more and critcize less. To find simple joys every day, write them down and put in a jar so at the end of 2019, I’ll have 365 amazing moments to remember.

My wish for you is the same. Find time for you – you can’t care for your child when you are burned out. Remember the things that bring you joy and look for them every day. Autism is hard. I know that. There are still joys to look for. Maybe it’s only 90 seconds to run to the bathroom by yourself – enjoy every second! ☺

Make this your resolution.  Don’t think you have to lose weight – think that a few minutes of exercise will relieve stress.  Change your resolutions into something easier to think about.  Don’t think about major changes.  Think about small steps – maybe clean out one closet as a step towards organization.  With autism, you don’t have a lot of extra time – so maybe just plan to find those precious few minutes every day just for you.  Minutes are there – you just have to be really creative to find them.  You need to do this – for your child, for your family, for you!

Happy New Year!

Posted on

Autism and the Official Christmas List

Autism and the Official Christmas List

Casey is starting to get that look in her eyes. It’s only two days before Christmas and she’s starting to think about everything we have done – and what still needs to be done to make a “perfect” Christmas in her eyes.

We went to Oglebay to see lights. Check. (Actually, she just wants to go somewhere with a big light display – she doesn’t care where.) We went shopping and got her gifts. Check. We made some of her gifts. Check. We went to the Christmas dance. Check. We made cookies. Check. We wrapped her presents. Check.

And now she is listing what still needs to be done. We still have to open presents with Mandy and Cory tomorrow. We still have to drive around and see local light displays tomorrow night. (Christmas Eve.) We have to read “The Night Before Christmas.” They have to go to bed early so Santa can come. (She is still saying she’s getting up in the dark Tuesday, but she laughs when she says it! 🙂 ) They have to look in their stockings (and she has to do to “the pose” and get her picture taken with her stocking.) and open their presents from Santa.

Then it will be time for a nap before they go to Grandma’s for lunch with their dad. When they get home, time to relax and wait till it’s time to go to my family’s Christmas supper. And she has a list for there, too. First, we eat. Then presents. Then the official Richcreek family picture. Then sock game. Then other games. And until she has played at least one game of something, she is serious. I mean, hardly a smile, you can see the wheels in her mind turning serious.

And then…. she smiles. The list in her head is complete. She has seen and done everything she is supposed to for the perfect Christmas. She can finally smile and laugh. She will smile for more casual pictures with her cousins. She will giggle with happiness. She will have a hard time going to sleep Christmas night because she is happy.

And I wish it was that easy for everyone to have the perfect Christmas – whatever that may mean in your family. Rob will go wherever and do whatever he’s supposed to do, but he doesn’t take holidays as seriously as she does. He is happy to be with Mandy and Cory and the rest of the family. He is happy to open presents. And he is happy to hide in Uncle Jeff’s old bedroom when he needs some quiet time. He’ll go to sleep that night because the next day will be Hopewell and he’ll be ready to get back into his routine after being off four days.

The day after Christmas, Casey will start asking about New Year’s Eve. We never do anything too exciting, but she loves the routine. Snacks and party hats and noise makers. Maybe Grandma and Grandpa or Mandy and Cory coming over for a while. And usually, she wants her bath at the same time and heads for bed. She doesn’t care about the clock hitting midnight – only that we stick with the routine in her head. It’s pretty simple to make her happy.

Once in a while, I wish we could go to a big party on New Year’s Eve. But, really, I’m just as happy as she is that I can stay home in my comfy clothes. Rob won’t stay up. When he is ready for sleep, that’s it. He asks for party mix for a snack and will put a party hat on for a few seconds.

I hope each of you has the same perfect Christmas and New Year’s – one that is as unique and special as your autism family. Don’t compare your holiday season with anyone else’s – be different! Be safe, be happy, be blessed. Merry Christmas!

Posted on

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.

Posted on

Autism and a Different Looking Christmas

Autism and a Different Looking Christmas

As autism parents, we want to give our kids the same magical Christmas that typical families have. It’s a struggle, at times, but who decided what type of Christmas is the best?  Just because we do things differently than anyone else doesn’t make our holiday traditions any less special.

I just read an article about one family who gives their son with autism a gift every day for a week or so.  He can’t handle the excitement and the over-stimulation of Christmas morning, so they spread out his gifts over time.  He can enjoy each gift and not be overwhelmed.  They don’t have a big Christmas tree, as it’s not safe for him, but they have a tree in their daughter’s room, so she can enjoy it the whole season.

Unfortunately, I also read some of the comments from people about their arrangement.  I can’t understand why people are so negative!  We need to support each other and our choices, not tell them how to enjoy their holiday!  If that family is happy and it works for them, that’s awesome.  I’m betting that the people who made negative comments have a few odd things about their holidays, too!  🙂

We don’t have to go to that extreme here, but we also don’t go to a lot of parties or events.  I try to find things the kids would enjoy doing that doesn’t involve crowds (or we go at odd times to miss the people!).  Last night, we went to a drive-thru festival of lights about an hour from home.  Casey knew we were going and was up early that morning to get ready, even though she knew it had to be dark before we would see lights.  She seemed to enjoy it, but I’m not sure Rob liked it as much.  He was looking at lights, but he didn’t seem to care much about them.

The nice thing about the drive-thru light shows is we don’t have to worry about other people.  We can go early, before the lines of traffic get too bad and be nice and warm in our car as we look at the beautiful displays.  I can turn music on that they like and they can have snacks, if they want.  The zoo has an awesome light display and we’re thinking about traveling there soon.  Both of the them love the zoo, but with Rob fighting yet another ear infection/virus, I’m not sure walking around in the cold is such a good idea.

Casey wants to see Santa.  And go shopping for gifts for others.  And make cookies.  And go to the zoo.  And go to another light show.  And go to the Christmas dance.  And wrap presents.  And… and…. and….   Rob wants to go to the dance.  Period.  🙂   He does enjoy picking out gifts for others, but he doesn’t get excited about it like Casey does.  He’ll go when I say “Let’s go shopping.”  He’ll wrap presents whenever we get to it.  He’s pretty laid back about the whole thing.

Christmas Eve, we’ll open presents from each other.  I started doing this when the kids were younger to help entertain them that day while I was finishing getting ready for Christmas.  Then, I wanted them to understand who gave them what gifts. (My kids have to write thank you notes for their presents – old fashioned idea, maybe, but it’s important to show appreciation!)  When we did everything on Christmas morning, they couldn’t really appreciate their gifts.  So now, Christmas morning is just for Santa.

Casey is already talking about getting “up in da dark” that morning.  Last year, Rob got up during the night and ate snacks from his stocking while I slept.  He never touched the presents, but couldn’t resist the little can of Pringles in the stocking.  Casey rips everything open, yanks tags off of clothes and leaves it all piled on the couch.  Then she goes back to bed until she has to get ready to go to her grandma’s house for lunch.  Rob is slower at opening gifts and usually goes back to bed, too.

Often, when they get back from lunch, they take another nap before supper at my parent’s house.  Casey has such a schedule in her mind that I’m not sure she truly enjoys the day. (Autism and schedules can just stink at times!)  She is very serious about each thing we do and you can almost see her checking items off her list until late that evening, when her list is complete, and she can relax.

We don’t rush from place to place for days.  A long time ago, I learned it was so much more fun to take a nap on Christmas Day than rush around.  We have a very relaxed holiday here.  People are welcome to stop by and see us if they would like.  I’ll have snacks and cookies for guests.  But, really, it’s a quiet day.  They have plenty of time to relax between grandmas’ houses and are usually ready for bed right on time that evening.  (Of course, we have to stick with our usual evening routine, even on Christmas!)

The hardest part of my holiday is shopping for Rob.  Casey will give me a list a mile long – including colors and sizes – but this year was the first time Rob told me something he wanted for Christmas!  I was in tears when he said he wanted “Signs” for Christmas!  (And yes, he is getting several!)  He has never been able to answer “what do you want for Christmas?” before.  A huge step forward!!   I also buy him things most people wouldn’t really consider gifts – a huge box of crayons he won’t use, several packs of clay to cut up, packs of paper to rip up.  (Lots of sensory things to help with his autism anxiety!)  These things make him happy, so that’s what he gets.

There are so many things I would love to do around the holidays!  I have a list of places that we can visit that I think the kids might enjoy, but I have to stop and consider their needs, especially Rob’s.  He needs time to be at home, in his room, ripping magazines and just chilling out.  Casey needs that time, too, but she’s more likely to run and run and run and then have a meltdown.  Balancing their needs is difficult – especially at this time of the year.  Today, she wants to go shopping before they go to grandma and grandpa’s house, but he is having major anxiety issues, so that’s not something I’m willing to attempt.  She isn’t pleased with me, but she’ll get over it.  I hope without a meltdown.

Our Christmas won’t look like yours, but it’ll be special – just for us.  Just like every other family in the world, we do what’s best for us.  It may look odd to you, but running yourself ragged trying to do everything looks odd to us.   🙂   I hope each of you finds the perfect balance for your own special family!

Posted on

Autism and the Excitement of Christmas

Autism and the Excitement of Christmas

This time of year can be especially difficult for families with autism.  So many people with autism rely on schedules to function each day and the holiday season with all of the extra activities can throw anyone into a meltdown.  (Even a few “normal” people!  🙂 )   Casey used to have a really hard time each December, but now, she’s just excited about everything.  Rob takes it all in stride – he’s pretty mellow about things, but his anxiety can be higher when he doesn’t get enough downtime.

We started our season a few weeks ago by going to our town’s Christmas parade.  It had been several years since we went to one as the kids are usually at camp that night.  Casey was beyond excited – she was going to see Santa on a fire truck and couldn’t stop giggling about that.  Rob was happy to go because Casey was happy and Mandy and Cory were coming!

He even put a hat and gloves on (mostly because Casey did!) and sat quietly under a blanket while we waited.  He did let out one yell, but when Cory reminded him he was hurting ears, he settled down again.  He was happy to sit and watch all of the lights – until one of the trucks pulling a float blew an air horn!  He jumped a foot and covered his ears as tightly as he could.  It has been years since I’ve seen him affected so strongly by a noise (I’m wondering if the ear problems he has had this year could have contributed to him being more sensitive to sounds) and I felt terrible.

Rob tensed up every time a truck came near us.  Mandy and I took turns covering his ears for him so he could relax.  Unfortunately, the excitement of seeing Santa was dimmed for him by the realization that there was an entire line of fire trucks coming towards him.  He loves fire trucks, but was so scared about the air horns blowing unexpectedly that he couldn’t really enjoy it.

Casey, however, was almost bouncing in her chair!  Santa was coming!  And he waved to her!  She couldn’t take her eyes off of him and the smile on her face was priceless.  She watched until she couldn’t see him anymore and asked if she could go talk to him soon.  (That’s on our list of fun things to do!)  I told her we would go to the mall and see him.

The day after Thanksgiving, we start decorating for the season.  Boxes were everywhere and Casey couldn’t wait to get her tree up.  I told her she needed to put her laundry away first and she did it in record time.  Their trees were up and stockings hung in their rooms.  They both love going to sleep with the tree lights (pretty and calming!).

We have a list of places we want to visit during the month.  Drive-thru light shows are always a great way to spend an evening (Never have to worry about the weather, crowds or anxiety!) and I’ve found a few new ones that we’re hoping to make it to this year.   Several of the zoos in the state do extensive light decorations, too, so that’s another option.  Casey just can’t wait for all of it!  She is constantly bringing me her calendar to ask for specific dates for activities.  It’s hard for her to understand that the weather is a factor and some things can’t be planned too far in advance.

One of the decorations that make our home special is the picture with this post.  Look carefully and see that Baby Jesus is being guarded by a Teenage Mutant Ninja Turtle.  Rob got this turtle years ago in a McDonald’s Happy Meal and insisted that the turtle watch over the baby.  Every year, he looks for the turtle and places him near the baby in one of our nativity sets.  Rob kneels down and makes sure the turtle is in just the right place and that’s where it sits until I pack away the set for the year.  Rob checks each time he walks through the room to be sure the baby is still being guarded.

We stick with family gatherings and are so lucky that our family understands that Casey is deadly serious during the parties until the checklist in her head is complete.  First, you have to eat, then open presents, the take a family picture, then play games.  And when the games are played, she can smile and laugh because she is happy that everything was done and was just like the year before.  Rob joins in for parts of the party, but he also escapes upstairs to a dark, quiet room when he needs to.

I have a lot of ideas in my head of things I want to do during the Christmas season.  At times, it’s hard to balance what I know Casey would love with what Rob would enjoy.  She went to see The Nutcracker last week (my niece dances in it every year) while Rob stayed with me.  She wants to see Santa, while he probably could care less.  (She firmly believes in Santa – Rob will believe because she does, but I’m not sure he truly does.  He just won’t ruin it for her.  Empathy at it’s finest!)  She wants to make crafts and he might join in for a little while, but it doesn’t really interest him.

She wants to bake cookies.  He doesn’t care for them.  They both like to shop for presents for others – he tends to be more serious in his choices.  She knows who she wants to buy for and will grab anything at times so she can be done and look for things for herself.  They both love to wrap their gifts and watch people open them.

It’s also hard to balance what I want to do with what is best for them.  We can’t do too much in the evenings that may disrupt their night schedule or they may not sleep.  Long days away from home make it hard for Rob to relax when he gets home, so how far we can travel is a big factor in what we do.  You will have to try to balance what you want to do with what is best for your little one.  Even if they enjoy the activity you plan, will they be over-stimulated to the point that anxiety gets too high?  Will they be able to calm down when you get home?  It’s exhausting to try to think about all of the “what-ifs” when you plan something new!

While it may seem easier to just stay home, what if you tried and it went perfectly?  What if everyone has fun and you create memories that you never thought you would have?  You have to give your child a chance to be successful – even as you dread the possible meltdowns or stares from other people.  You will never know until you try!  Take those baby steps and venture out!  I know Casey and Rob are constantly surprising me with what they are able (and want!) to do now!

Start your own traditions for the season.  Your ideas may seem odd to others, but who cares?  They are for your family – your children.  Take drives to look at lights.  Make some gifts.  Bake.  Decorate as you need to.  Buy the comfy clothes your child needs to enjoy a party.   Try to relax and enjoy special events.  Find a babysitter (yeah – not easy, I know!) and leave your little one at home if you truly know they won’t enjoy what you are going to do.  (Let go of that guilt, too!)

I hope your holiday season is full of excitement, fun, love and laughs!

Posted on

How Autism Alters Birthday Expectations

How Autism Alters Birthday Expectations

In just a few days, Rob will be 26. Casey is more excited about it than he is – at least, so far. She wants cake and ice cream and balloons and presents. He wants to eat Long John Silvers for supper.

Rob doesn’t like being the center of attention. He likes opening presents, but won’t tell anyone what he would like. It’s almost like he thinks the presents just appear. He knows who gives him what, as the kids are expected to write thank you notes after receiving gifts (yes, probably an old-fashioned idea, but I insist and they do them without any fuss.) I help them by writing “Dear — ” and then they do the rest. Usually very short and sweet, but I think it’s important.

Anyway – he wants “presents” for his birthday. Any suggestions I give him as to what he might like, he just repeats. I struggle every holiday and birthday because I desperately want to give him things he wants. When he was little, it was easier – blocks, trucks and anything with ABC on it. Dr. Seuss books, Power Rangers, Wizard of Oz – all sure bets. Now, it’s harder. He used to want CDs or DVDs but he watches/listens to everything on his iPad now.

While he doesn’t completely understand gift cards, he does know that when he gets one with the golden arches on it, he gets to go to McDonald’s. And finally, a year or two ago, he understood the idea of money and being able to go buy what he wants. And I’m letting go of the idea of spending money just so he has something fantastic (to my way of thinking anyway) to open.

Because a week or so ago, I was looking through my scrapbook of the kids’ birthdays and I found his 10th birthday. You can sense my excitement over that day even now, as that was the first year he asked for a party! We had always had his cousins come over, but he never cared at all. He would open the presents, blow out candles on a cake he didn’t want and hide in his room.

But – that year! He wanted hamburgers and he wanted kids to come and swim with him. And we went all out for it! He had his cookout and they went swimming (until a storm blew in!). He opened presents and they went swimming again. Every picture of him that year shows a big smile on his face. He was playing with the kids (true, they were all in the pool together, not really one on one but he was having fun!).

I noticed something else about that year. I had listed his favorite presents – 10 packs of crayons and a jar of dill pickles. So simple, yet he was excited enough to hold them up to the camera so I could take a picture.

Every time it comes to buying presents for him, I tell myself (and I wrote it in this blog at Christmas!) that I’m going to buy stuff he likes. And I do, but I feel guilty if I don’t spend as much on him as I do Casey, Mandy and Cory. I know he doesn’t know the difference, but I do. I can tell myself a hundred times to let it go, but it bothers me.

This year, I bought him a few more street signs for his room, some clay to cut up and an ABC banner to hang up or rip up (it was only $1!) And I’m going to give him money to go to Walmart and pick out what he likes. Maybe a huge jar of pickles (I hope he’ll share!) or 15 boxes of crayons (which he doesn’t use anymore – his stockpile numbers close to 1,000 crayons now) or maybe he’ll buy packs of paper to rip up. It will be his choice, not mine.

Birthdays are a big deal to me.  I like making the birthday person feel special on their day and autism has an affect on that expectation.  I want to celebrate and buy the perfect gift.  I want to make the day awesome.  Casey is much easier to do that for – she loves everything about birthdays.  Rob, not so much.  He enjoys presents, but doesn’t appear to care what he gets.  He wants to pick where we eat supper at.  He wants Mandy and Cory and Grandma and Grandpa to come.  And he wants to disappear into his room as soon as possible.

I worry that he really wants something, but doesn’t have the ability to tell me.  Then I worry that he’ll be disappointed when he doesn’t get that special gift.  (Yeah – I worry too much at times!  🙁  )  Rob will know it’s his birthday because I will wake him up singing, but otherwise, he’ll go to Hopewell and be thinking about supper.   He won’t tell me his birthday or how old he is.  (He looks at Casey and waits for her to answer for him!)

So birthdays are another part of life that gets altered because of autism.  I have to let go of the idea I have of a perfect day for him and make it his idea of a perfect day.  It won’t match mine, maybe, but if it makes him feel special and happy, then that’s what we’ll do.

Happy Birthday, Robbie-Dodger – my little boy in a grown-up body, who still loves his Power Rangers and the Wizard of Oz, who loves ripping paper and magazines, who loves french fries and tacos and thinks his sisters (and Cory!) are the coolest people in the world.  I promise to make your day just what you want!   🙂  🙂