Posts

Posted on

Autism and Terrible Anxiety

Autism and Terrible Anxiety

I’m not going to lie. Yesterday was NOT a good day here. We don’t have rough days often – or at least days that the “roughness” lasts all day, but that’s what happened. I even wrote a blog yesterday, but I had to delete it and start over. It was terrible!

So – in the last week, we have missed a day of work for ice (which Rob knew was coming – and I would have, too, if I had picked up on his clues. Now it’s obvious – at the time, I wasn’t thinking about the weather at all!), I had an appointment that didn’t go as I had hoped and I was anxious about that, we had a huge snow storm heading for us and then, of course, the full moon/eclipse for tonight. It’s no wonder we were all a little anxious, but it was worse than I thought.

Instead of snowing early yesterday, it rained. And rained. And rained. I mean, pouring buckets. We all wanted snow. I was already worried about how Rob would be feeling when he got up because he had a hard time getting to sleep Friday night. It’s been a while since that happened, but he was awake until after 1, quietly singing his anxiety/storm song. I knew the storm was coming.

I let them sleep as late as they wanted and he seemed okay when he got up. But, as soon as Casey got up, he ran to her room and started watching Power Rangers. That was fine for a while, but then he started his storm song. She was anxious about the weather, too, and wanted to be in her room folding socks and listening to music. He wouldn’t leave. (He has a DVD player and TV in his room, but he refused to use it. When I brought the movie to his room, he ran in, grabbed it, shut everything off and went back to her room). So I was waiting for her to have a meltdown. Irritation was written all over her face.

His song got louder and he started adding a few yells every 4th or 5th repetition. I gave him clay… magazines… his iPad…. offered him snacks. Nothing worked. By evening, I was even more on edge and ready to have a crying meltdown. I kept praying that it would start to snow (Sometimes, that helps him calm down – that the storm was actually here). But nothing but rain…. dreary, depressing rain.

By supper time, he had been repeating it over and over for 6 hours. I counted once – he averages 3 times a minute. That’s over a 1,000 times. It’s not that he was close by us, but the sound carries. It’s like a mosquito buzzing in your ear. It’s not loud, but drives you batty. And trust me, I don’t need anything else to drive me nuts. 🙂

After supper, Casey relaxed. She was grinning and talking about dressers and stuffed animals and her birthday (not til March, but why wait?) She giggled and smiled and truly, I didn’t care why she was happier, only that the threat of a screaming meltdown from her seemed to have passed.

When he came down for his shower hours later, I told him he couldn’t watch Power Rangers anymore, as Casey would want to watch Elmo before going to bed. As soon as he got out of the shower, he ran back up to her room and started the movie and the singing again (he also sang through his shower!) When she was ready for bed, he came down, but his song was even louder down here. I was as close to tears as I’ve been in a long time. I just knew he wasn’t going to go to sleep.

He finally took a pile of magazines, but kept repeating his song. (Someone suggested I record it so you can all hear it, but I’m not sure I want to do that.) I took Blue outside and went to watch TV while I waited to see what he would do. In less than 10 minutes, I realized I hadn’t heard him and was shocked to find him sound asleep! I just kept thanking God over and over and prayed that he slept all night.

He started “singing” at 11 yesterday morning and finally stopped at 9:30 that night. He repeated it almost 2,000 times. I call it his song, but there aren’t always many words. You can understand “John Anderson, John Michael Montgomery, Josh Turner, Long Black Train” and sometimes “Splat” after a series of sounds like trains on tracks. The beginning is always the same, the ending changes. Some days, I don’t even notice it.

I was worried that today would be a repeat of yesterday because even though the storm has passed, the full moon and eclipse are still tonight. (Anyone who says that doesn’t effect anyone needs to live in my circus through a full moon cycle!) I’ve even heard that the new moon bothers some people. Some months, Rob is more anxious for about a week around the full moon. Other times, he doesn’t seem to be too concerned about it. Casey feels it just for a few days. It may bother him more because he has more anxiety than she does.

I am so blessed to be able to say that, so far, anyway, they are both happy today. He is really quiet and doesn’t want to talk very much, but he has his iPad and magazines. I haven’t heard that song at all (Knock on wood!!! 🙂 ) She has been laughing all day. She is also happy their workshop is closed tomorrow – another reason he may have been more anxious, since that’s a change in his routine.

If his anxiety was the result of all three things happening together, at least I don’t have to worry about a super blood wolf moon eclipse for a few years! (Always look on the bright side! 🙂 ) I’m sure he doesn’t feel like himself today, but he’s coping and that’s all any of us can do. The wind is blowing and that always bothers him, too. Today will be a demand free day – they can do what they want without my interference! (well, most of what they want, anyway! 🙂 )

I hope that each of you are coping, too. Deep breaths, folks. Or cry, if you need to. If you are near the snow, be safe!

Posted on

Autism, OCD and the Can’t be Rushed Morning

Autism, OCD and the Can't be Rushed Morning

The kids and I have a routine for the mornings when we are all leaving the house about the same time. It works well for us and we have a little time to adjust, if necessary. But last Friday morning was one that about put this almost crazy autism mom over the edge.

Casey and Rob were going to spend the night with my parents that evening. Since they both “need” certain blankets to sleep with, I told Mom that I would bring their stuff out before I went to work that morning. The kids have been leaving in plenty of time for me to do that. Until….

I had a hard time getting up that morning, but I was still almost ready when I woke Casey up. She stumbled to the kitchen (she wakes up like I do – barely moving most days! 🙂 ) grabbed her pills and juice and wanted waffles for breakfast. Not a problem, but somehow, I had managed to not have our lunches packed (Blue took forever outside!) and I still needed to pack their clothes for Grandma and Grandpa’s house.

I’ve packed for them before and had to unpack and let them do it, so I told Casey to go get her clothes and the blanket and stuffed animal she wanted to take to Mom and Dad’s house. Somehow, this translated in her mind to lay back down on her bed. I’m trying to get lunches packed when I realize I hadn’t heard her in the bathroom. After several calls up the steps and a threat to go get her, she came down – without her stuff. So we went back up – together – to gather it all and get her packed.

She went into the bathroom as I went to get Rob up. He rolls over as soon as he hears me every morning and grabs his juice and pills. I handed him his breakfast and went to get his bag so he could pick what he wanted to take. Of course, I couldn’t find his bag – he decided it didn’t belong in his closet or the closet upstairs (but did he tell me? of course not!) I finally found it and started packing his blankets only to have him pull them back out because I packed the burgundy one first – and the brown was is supposed to go on the bottom.

So, I put the brown one in, the burgundy one and the blue one – only to be told I packed the wrong blue one – and he pulled everything out again, because he wanted the right blue one in on top of the brown one and under the burgundy.

I hate to admit it, but by now, I’m grinding my teeth. None of us are ready, they are packed, they haven’t had breakfast and their ride would be here in less than 10 minutes.

So we try again – and finally the blankets are properly packed. He needed to change his shirt before work (He has a few old shirts that I told him he could wear at home, but needed to be changed before work.) He was fine with changing his shirt, until I pulled out his coke shirt and he was wearing the official “wear only with the coke shirt” pants. So he yanked off the shirt he was wearing and put the coke shirt on, but then realized he wanted to wear the coke shirt at Grandma and Grandpa’s house, so he completely stripped, stuffed those clothes in his bag and pulled another pair of pants and shirt out of his drawer. And I hear the minutes ticking by.

I knew then I was never going to be able to leave when they did.

Casey came to me for help in brushing her hair and decided she had the wrong socks on to wear with her boots. (I have no idea why!) So she disappeared upstairs to find the right socks, while Rob is stuffing his feet into snow boots because Casey is wearing boots. Then she came down in tennis shoes, so he ran back to his room to put tennis shoes on. And I’m sweating and ready to start swearing under my breath.

She finally sat down to eat her waffles. He turned the TV on and immediately started singing his storm song. Over and over again. She stopped eating to watch him. He quieted a little, she finished eating and went to get her coat. She had her red coat on, but wanted a scarf. I told her to get the scarf Mandy made her. No. That scarf can only be worn with the Elmo hat Mandy made. So wear that hat. No. That hat has to be worn with her black coat. (By now, I am so ready to start cussing – you can’t even imagine.) So wear the black coat. No, it’s Friday. (AHHHHHH!)

I took a deep breath and said go get a scarf. No. Fine, then don’t wear one. She stomped to the couch and flopped down. I got her one of my scarves, but you can imagine how that went over. She started getting upset as I can’t find another scarf that will make her happy. Rob got louder and Blue started barking. I still am not ready for work, nor do I have my lunch packed or Blue fed. And I’m so stressed by then, I can’t even think what I need to do first so I can get out of the house on time.

Casey was still asking for a scarf. Finally, I understood she wanted a new one, but that she also wanted a new hat and gloves, too, because you simply cannot wear an old hat or gloves with a new scarf. I’m done. By then, I didn’t care if I ever saw another scarf.

Their shuttle came around the corner and Rob suddenly remembered he needed his headphones for his iPad. I told him I would get them, but of course, I grabbed the wrong pair (how was I supposed to know there is a certain pair for Fridays at work??) Casey was walking out the door when she decided she packed the wrong slippers for Grandma and Grandpa’s house. I asked which ones she wanted and told her I would get them after she left. She stopped on the porch as if she was deciding whether I could handle such an important task, but finally, they were both on the shuttle and I could close the door.

I thanked God that most days aren’t like that one. Truly, had I not needed to take their stuff to my parent’s house, it wouldn’t have been any big deal. And I knew mom and dad would meet me in town to get it, but I was in a rush by then and wasn’t thinking about that. I had too much on my mind last week and not enough sense to calm down and forget the other stuff for a few minutes.

Luckily, when one of the kids has a morning like this, the other doesn’t pay any attention. It was just dumb luck (and the weather change, I’m sure) that they both had OCD issues the same morning. I’m just glad it’s over (and that I made it to school – with about 30 seconds to spare! 🙂 ) and I’m hoping not to have another morning like that for a long time!

Posted on

Autism and the Freedom to be a Perfect You

Autism and the Freedom to be a Perfect You

So many times, it seems parents are looking for a “cure” for their child’s autism. Or parents are crying about how terrible their lives are with a special needs child. I’m not in any way denying life with autism is difficult at times, but typical kids can be rough to raise, too! It’s all in your perspective – whether you are a glass half- full or half-empty, I guess. To me, life can always get worse.

On bad days, I try to keep telling myself that things are not as bad as they are for some families. My kids can do a lot of personal care themselves. They are sleeping (right now, anyway!) and eating a lot of different things (though Mr. Picky stills pops up once in a while! 🙂 ). His anxiety levels are under control and her meltdowns have mostly disappeared. Yes, I get tired at times and I get frustrated that we can’t just go places without a lot of planning. But, I wouldn’t change Casey and Rob. Their autism is part of them – just like their eye and hair color.

I do understand parents who wish there was a cure. I just don’t agree with them. I know they are tired – are frustrated – are angry at the world. I get it. I’ve been there. When there were issues at school, I just knew we weren’t going to make it through without my having a breakdown or exploding. I also know that if Casey and Rob didn’t have autism, they wouldn’t be the awesome, amazing, wonderful people they are. And I wouldn’t be the person I am.

Maybe, if they didn’t have autism, they wouldn’t have their artistic abilities. Maybe Casey wouldn’t have her beautiful singing voice – or if she did, she would be afraid to use it. Maybe they would find jobs that they didn’t like. Maybe they would fall in with the wrong crowd. Maybe we wouldn’t be as close as a family. Maybe they would find jobs they aren’t happy with. Maybe… Maybe… Maybe…. Maybe their autism is the reason they are happy. How can I wish to change that? Isn’t that every parents’ biggest wish for their children? To be healthy and happy?

It’s hard to watch your child struggle with difficult things – whether it’s playing sports or learning to wear new clothes, trying to talk or trying to learn long division. Having your child “cured” of autism won’t change that. They will always have obstacles that you will want to help them over – and that you will cry as you watch them struggle. Autism isn’t causing that – life is.

As we walked with Mom today, Casey and Rob got farther and farther ahead of us. Rob knows the path and off he goes. At every turn on the path, he turns to make sure we are still coming. He may be independent, but he still needs reassurance. Casey stays between us – he won’t let her get in front of him. They wander around the park together and I follow behind, thinking about how a few short years ago, I would have never let them get that far from me – for their safety and my sanity.

I had to learn to let them be free – to grow into the amazing young man and woman they have become. If I stayed too close, they would have leaned too much on me and not become who they are meant to be. Giving them freedom is so hard! (I think it’s hard for most parents!) They had to learn to take care of themselves in some situations and learn to ask for help in others. If I kept them too close, they wouldn’t learn that.

When we go walking, I let them wander a little. (Not too far, though – their safety is always more important than their freedom!) I let them try anything they want to and offer whatever supports they may need. You need to let your child try new things, too. You never know what hidden talents they may have!

I want all of my kids to have the freedom to be whoever they want to be. Autism or not, everyone deserves that. Just because they have autism doesn’t mean they don’t have their own dreams and wants. Those dreams may not be the same as people without autism, but maybe they are. You won’t know until you let your child try – until you decide that you have an amazing child who happens to have autism. You won’t be able to change that fact and the sooner you accept autism, the happier you and your child will be.

Cry if you need to (I sure do at times!) then think about how amazing your child is and learn to give them the freedom to be the perfect version of themselves!

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

Welcome to our Loud, Crazy Autism Home

Welcome to our Loud, Crazy Autism Home

Yesterday, I came across a meme created by Joy of Autism  (if you haven’t checked out her page, yet, you are missing something!) about welcoming people into her home – and reminding visitors that their home is her son’s safe place, to truly be himself.  I shared it on our Facebook page and was surprised at the response from everyone who saw it.

When we are at home, Casey and Rob are free to be themselves.  While I do remind Rob to use a quieter voice, at times, when Casey is trying to sleep, for the most part, I let them be.  They do so well at holding it together every day while out in the world – they need to be able to come home and just relax.  I do the same thing.  It’s usually only a few minutes after I get home that I’ve got comfy clothes on and I’m ready to chill for a little while.

Visitors to our home know that Rob may be singing his anxiety song or fairy dancing through the house.  Casey might be stomping her figure eights upstairs and trying to sneak into the refrigerator.  They know that I’m glad they are visiting, but I’m also always aware of what the kids are up to – that I may jump up at any time and go check on them.  Strangers who visit for the first time can either accept that or leave.  This is OUR safe place and we make no changes for others.

I remember when they were little and Mandy had friends over.  Whenever Rob took his shower, she would make sure her friends were safely upstairs, as modesty was never Rob’s strong suit.  Now, he wouldn’t dream of leaving the bathroom with no clothes on, but he may venture out without completely pulling on his pants.  We’re used to it, so if we do happen to have company, I try to position myself to block any view.  (He comes right to the kitchen for his pills and snacks after his shower.)

Casey could care less who sees what.  I have tried over and over to remind her she needs to be dressed when she leaves the bathroom, but if she got her weekend-after-bath slippers instead of her weekday-after-bath slippers, she’ll run to her room to make the switch.  (She has several classifications for slippers – and she refuses to wear a pair of slippers that aren’t right.)

So, when you visit, if I seem to be standing in the door between the kitchen and dining room and looking over my shoulder for a long time, I’m just making sure you aren’t treated to a sight you can’t unsee.   🙂   When we had the pool, Casey and Rob both would yank their bathing suits off on the back porch so they wouldn’t get the floor wet.  They never cared who might be driving by.

Rob might be ripping paper and rocking in his recliner.  He might be making noises that you can’t understand, but I do.   It’s okay if you admit you can’t understand.  It’s not okay for you to think I need to change him while you are here.  That ain’t happening.  Casey might be sitting on the love seat and playing with her iPad.  If she has it too loud, I’ll ask her to turn it down – but I won’t ask her to leave the room.

I won’t ask her to take the blanket off of her head so you can talk to her.  She’ll hear you just fine – say what you want.  I won’t ask him to come out of his room while you visit.  He’ll come out if he feels like it.  You are welcome to peek in and say hi to him, but know that he may not answer you.

It’s hard to let people into our safe place.  Any time someone new comes in, I am nervous, as you never know how people will react to autism.  I don’t think anything about it, but for someone who isn’t around autism, our routines and quirks can seem odd and not worth the effort.  (Our schedule is worth the effort – trust me.  Life without our routine is not fun.)  I can’t change our routine for you.  It’s simply not worth it to me.  At times, a slight change can keep the kids up for hours and I need sleep.

Other times, you may not notice anything odd about our home.  When the kids are having good days (and most are good!), autism isn’t obvious, unless you know what you are looking for.  On other days, you may see/hear the kids stimming to relax.  You may find their habits weird and that’s okay as long as you remember they are doing what they need to do to make sense of this crazy world.  You are welcome to ask questions.  You are not welcome to tell me how to change our world.  I will show you the door.

I’m sure that sounds terrible, but you knew about the autism before you came to our home.  If you have some experience with it and offer a few ideas that you have tried, thank you.  If you are nervous, that’s okay.  If you really want to know us, welcome!  If you are just nosy, go away.  We don’t need you.

Please, parents – let your kids be themselves – especially when they are at home.  I know you may not want some people to know just what your life is like, but really, what harm can it do?  If you are embarrassed, try to relax.  Your visitors should understand and, if they don’t, do you really want them around your children?  You are their protector, their advocate, the one they run to when they need help.

Home is their place to just be them.  We love to have visitors, but only ones who understand that we do live in a circus and we love it that way.  Accepting our wild lives is the best gift you can give us this holiday season!

 

Posted on

Autism and the Different Therapies we Tried

Autism and Different Therapies

A few weeks ago, I mentioned in one of my posts that Casey and Rob had taken Equine (Horseback) therapy and I had a few questions about how that helped the kids and what else we had tried.

Casey and Rob both started with speech therapy early.  I drove Casey to a city about 35 miles from us twice a week when she was 3 to get speech therapy.  It was the closest place for us.  Once she began preschool with our local school district, she got therapy there and once a week the therapist came to our house.  Not only was this lady an amazing speech therapist, but she had some experience with sensory issues and taught me a few tricks that I still use today with the kids.  (Thanks, Connie!)

Rob started getting speech at home, along with a preschool teacher who visited.  Both were once a week when he just turned 3.  (Mandy was still in the preschool class he would be starting, so we thought it best for her to finish the year and have him start the following fall.  With his late August birthday, he would still have two years of preschool.)

Casey continued with speech therapy when she started Kindergarten and was seeing the therapist twice a week and for group time.  Our local hospital finally had a speech clinic by this time, so I took them both every week for one on one at the clinic.  This lasted about a year, until the hospital lost the therapist.  Several years later, I would again be taking them to that clinic for speech.

Rob went to our county board of DD Kindergarten instead of going to our local school district.  The teacher he was supposed to have was one that wasn’t good for Casey and I refused to let her near him.  While he was in Kindergarten, he started Occupational therapy, along with speech.  When the school district hired an OT, Casey started seeing her, too.  (OT can be a wonderful tool to help with sensory issues!  Neither Casey or Rob had many issues with fine motor skills, but the sensory play they taught helped so much!  Thanks, Deena, Steve, and Brooke!)

We discovered that many of Casey’s meltdowns were from sensory issues.  She was simply overwhelmed by sounds and couldn’t help herself.  She didn’t have the words to tell me what was wrong, so she screamed and cried.  (Don’t misunderstand – some of her meltdowns were schedule changes, too, or my changing the routine that she so rigidly followed!)  I learned that piles and piles of blankets were an absolute necessity for both kids to be able to calm down enough to even think about sleeping.  (We still had sleep issues, but screaming wasn’t one of them – finally!)

Rob needed deep pressure to stay calm and control his anxiety.  He was terrified of loud noises (School bathrooms were a nightmare for him!) and he wore ear protection for most of his elementary years.  Not only did the head set block (he wore a set of hunter’s ear guards) the noise, but it added deep pressure to his head and he didn’t feel the need to squeeze his jaw as often.  He wore a weighted vest when he was at school and also had a weighted lap blanket for days he needed even more.

It was suggested that a swing may help him even more and the school purchased a large platform swing for his classroom.  Beth (his one on one) figured out that he could do math and spelling quickly while he was swinging so she worked with him while he laid on the swing.  Spelling was always easy for him, but although he could do the math, it had little interest to him.

In 2003 – 2004 (I can’t remember, exactly!) we found out that an equine therapy group had been started.  I knew the couple who started it and decided to take the kids one evening to see what it was all about.  I knew Casey wouldn’t like it, as she was scared to death of animals, but part of the therapy was petting and brushing your horse and I thought she might get close enough to touch one.  I also knew Rob wouldn’t be a problem – my little daredevil would try anything.

I was shocked when Casey climbed into the saddle of the horse before she was even asked if she wanted to ride!   There was a person walking on each side of the horse and another one to lead.  She sat up so tall and looked like she had been riding her entire life.  Rob jumped on a horse, too, and soon gave the volunteers heart attacks as he leaned too far one way and then the other so he could watch the horse’s feet.  I assured them he wouldn’t fall, but it took a few weeks before they believed me.

During their therapy, they had to complete different games from their horse’s back.  They threw basketballs, tossed beanbags and rings and had to stretch to ring bells.  With the beanbags, the holes were different shapes and colors and they were told which color/shape to aim for.  Rob had a deadly aim, even as he barely looked at the board.  I soon learned that while they were on their horses, they could do things that they couldn’t do normally.  They both knew their right from their left hands (After years of doing this on horses, they still can’t tell me when they aren’t on one.  Or they simply don’t care!  🙂  )

They could answer simple questions and practice their spelling words.  We practiced math facts – anything to keep drilling those lessons into their heads.  (and strangely enough, the spelling and math stuck with them when they weren’t on their horses – it seems only right/left didn’t matter).  Because there was a large group riding, the evening also became something of a social event for me.  I could talk to other parents of kids with special needs as we took turns leading horses or walking with the kids.  It was great knowing that Rob’s squeals or Casey’s obsession with socks wouldn’t be an issue!  (By the way – Casey’s horse was named Socks – how appropriate is that?)

After more than 12 years of riding, we stopped horse therapy for different reasons.  I had developed a severe allergy to the horses and could no longer be near enough to help (even with medication, there were times I could barely drive home) and the kids seemed to be losing interest in it.  It had become something that “had” to be done instead of something we all enjoyed.  If you have equine therapy close to you, please consider trying it.  It was a great experience for us.

Rob takes aquatic therapy every two weeks at the hospital to help with his anxiety and for something he loves to do.  Insurance will only pay for 26 visits a year, but we are both thrilled with that.  He loves going and he loves his therapist (Thanks, Erin!) and is always excited to tell me what he did that day.  I did have to warn her that he would sink to the bottom and sit and not to worry about him, but it did still freak them out the first few times he did it.  (It seems he will never come back up as he sits down there and grins up at you!)

There are so many therapies available to help people with autism, now.  I do the same thing with therapies that I do with meds.  I think about what good can happen, what side-effects can happen and the expense.  And I ask the kids if they want to try. Sometimes, the answer is no, and that’s fine.  I wait a few months and ask again.

ABA became popular when my kids were a little older and there was no one in our state able to provide those services.  When I taught preschoolers with autism, we used the ABLLS system and I did a lot of that with Casey and Rob, even though they were much older.  They both enjoyed the little games and I’m sure it helped some.

As with anything else concerning your child with autism, follow your gut instincts when considering a new therapy.  You will know quickly if something is working (or not working!) for your child.  Find something fun with a great therapist.  And if you would like to hear more about our experiences with the therapies we tried, send me a message!  🙂