Category: autism parenting

Posted on

Autism and Advice Every Parent Needs to Hear

So, last week, I shared with you the hardest thing I had to admit – that sometimes, when Casey and Rob were little, autism embarrassed me. I was surprised by the response to that post – how many people thanked me for sharing that. I’m sure everyone feels that way at one point or another, but are too ashamed to admit it. After all, we aren’t supposed to say things like that.

Well, here’s another confession (and one I just talked about with my friend, Joy, yesterday)… autism sucks sometimes. There. I’ve said it before and I’ll keep saying it. There are times when it just sucks.

Does this mean that I’m not incredibly proud of Casey and Rob? No. It means, sometimes, I’m tired and I don’t want to hear someone yelling “Long Black Train” in my ear all the way home. I’ve yet to figure it out, but that’s Rob’s transition phrase from somewhere to home. He has to say it a certain number of times (Honestly, I’ve never counted – maybe I should!) when we get in the car to go home. He never says it in anyone else’s car, but instead starts as soon as they pull in our driveway. Some days, I don’t even notice it. Other days, I have a death grip on the steering wheel so I don’t yell “STOP!” at him.

It means I’m tired of her insisting that she can’t eat leftovers. I’m tired of trying to guess what’s going on when I know they don’t feel good. (She is asleep on the couch now, but I’m fairly certain it’s a sinus issue, but she can’t tell me.) I get tired of the list of fast food places that ends with him yelling coffee cup. (I still can’t figure that out – I don’t drink coffee and don’t use coffee cups – always something different and exciting here. Sorry to our neighbors who sometimes get to hear the yell at 8 in the morning. 🙁 )

I think the hardest part, though, is the stigma that you feel when you admit that autism sucks some days. The terrible guilt you feel. The worry that people will think you mean your kids are a terrible burden that you don’t want anymore, when in reality, all you mean is that you are just too darn tired to think anymore.

It means that autism in the family can be stressful – certain foods to eat, certain routines to follow, certain clothes to wear. For some families, the inability to have a conversation with your children. Casey and Rob are able to answer simple questions and will usually tell me what they need or want, but I can’t ask them what they think about a certain song or movie. I can’t ask what they did at Hopewell that day. I can’t ask if they are happy or what their dreams are. I, like most other autism parents, go with my gut on most things and hope I’m right or close to it.

The weeks that Rob didn’t feel well last month are a perfect example. He had no fever, no cough, was eating like usual…. but he was sleeping 18-20 hours a day. I kept asking if he needed the doctor and he told me no. I asked if his ear hurt – no, itches. Throat? itches. Finally, after a week, I took him to the doctor only to hear Rob was right – no ear infection, no strep. He had a virus (not COVID). Had he been able to communicate more, we might have figured that out on our own. I hate it when autism makes me worry even more about Casey and Rob.

I’m not sure why it seems special needs parents are held to a different standard when talking about their children. Maybe it’s not true, but it does appear that we get handed a lot more guilt about being tired and stressed – when we have more reason than others to be tired. Being a parent is tough some days – everyone should be able to admit it and not feel guilty. It’s normal.

If you need a shoulder to cry on or an ear to vent to, message me. I promise – I won’t judge you for your feelings. Let go of the guilt, the embarrassment and go on being the amazing parents I know you are. Stay tough – but cry when you need to. Admit when you need help. Those of us who are parents to adults with autism have been in your shoes. You will get through the tough days. Practice saying “autism sucks sometimes” – just don’t settle in those sucky days because autism is also amazing and beautiful and special. Good days and bad days – just a typical life, with some added excitement. 🙂

Posted on

An Autism Mom’s Hardest Confession

An Autism Mom’s Hardest Confession

This is a hard thing to admit, but I think other parents need to hear it – and to know it’s okay to have these feelings. I hate saying it, but… At times, I was embarassed by autism.

Now, before you get on a high horse and start telling me that no mom should ever say something like that, let me say – I was young, exhausted, inexperienced and the world was different 30 years ago. And – it’s okay for me to have had those feelings. It’s okay for you to be embarrassed or angry or sad or frustrated. It’s okay to let those feelings out.

It’s not okay, however, to take those feelings out near your child. Walk away, take a break, hide in the bathroom. The only thing your child should feel from you is love and pride.

Casey’s deep need for routine and strict schedules caused both minor and major issues while we were out and about. Only once was it a total and complete meltdown (you can read about that here) but there were many, many times she would start jumping up and down, or scream once, or grab onto me and try to shake me. I felt like every eye in the store was on me. She didn’t like being told no and didn’t have the communication abilities to talk to me so she screamed.

Casey and Rob both were runners. I had to put him in the cart in stores simply because I couldn’t keep a tight grip on both of them and still push the cart. (I have to say – even with them taking off, it was Mandy that I actually lost one time. In a water park. I told her to stay in a certain section with us, not realizing everything was connected. She made a friend and wandered off. There were thousands of little blonde girls wearing pink bathing suits! 🙁 ) When they were little, at times, I was embarrassed by the looks I got from people who had no idea why I put him in the cart and had a death grip on her.

Rob’s sensory issues made a the cart a safer place for him and I lifted him into it as long as I could physically get him in – he needed it. The lights, smells and noises in the stores were too much for him. If he was in the cart, he could cuddle under his coat or put his head in his hands so he didn’t have to see so much.

One day, two boys decided to laugh at him about being so big and being in the cart. They chose the wrong day to laugh at Rob. The second time we passed them, they again made a comment and I stopped them. When the lady with them turned to see what was wrong, I explained her boys were laughing at my son with autism. I hope those boys remember that day. And I applaud the mom who gave them holy heck right there in the store with promises of what was to come when they got home.

Honestly, that was the best thing that could have happened. Standing up for Rob and explaining why he was in the cart helped me understand I didn’t have to ever feel embarrassed. I could try to explain and spread awareness. Or, if they weren’t willing to “become aware,” I could simply tell them to go to hell. Nicely, of course. It is really empowering to know you can change some people’s attitude by simply explaining.

Being embarrassed is something every parent, typical and special needs, goes through. It’s a little harder to deal with when people don’t understand why your child (or adult!) is flapping or rocking or humming or bouncing. So – explain to them. You don’t have to share many details – simply say they have autism and move along. If that person still wants to stare or make comments, you have to decide what approach you want to take – be nice, explain more, or be a little meaner. How I handle those times depends on the day. Most of the time, I walk away. When I don’t, I try to be nice. When it’s time to not be nice, I’m not.

If you are like me, you may feel embarrassed more when your child is first diagnosed. As the years go by, honestly, fewer things your child does will surprise you and it’s easier to roll with the flow. Rob still like to repeat numbers or colors or Power Rangers when he is in stores – loudly. I remind him to use a quiet voice and we move on. I don’t think much about it anymore. My guess is you will get to that point, too.

Autism demands that you learn to let things slide (up to a point!). You will learn to ignore stares and comments. You will learn to not take things personally – from doctors, teachers, insurance companies, strangers. You will learn to be stronger than you ever thought you could be. You may not feel it all of the time (I sure don’t !) but you will be.

And maybe, someday, we will live in a world where people are just accepted for who they are and no one will ever have to feel embarrassed by autism again.

Posted on

Autism and my Christmas Wish for You

Autism and My Christmas Wish for You

With less than a week to go before Christmas, Casey is getting more excited every day. She reminds me every morning that Santa is coming soon and that she is hoping for a new Elmo. Rob just grins at her, but he never mentions Santa unless I ask him what he wants for Christmas – then he says “Santa.” It took years for us to get to this point and I plan to enjoy every single moment.

My wishes for you are the same as the ones I want. Simple ones, really.

  1. I wish for excitement on Christmas morning, whether it is squeals of joy, flapping hands, or beautiful twinkles of their eyes. Honestly, there won’t be any of that at our house. Casey will be in full-on holiday mode and until everything has happened that she expects for that day, she is unable to fully relax. But, I will catch a small grin as she opens a new Elmo or a whole book of color by number pictures. Rob won’t say a word, either. But, he will carefully peel of the plastic wrap on his new signs and hold them in his lap as he opens other gifts.
  2. I wish for a meal of laughs and fun. I don’t know what a quiet meal is – and imagine quiet dinners would be quite boring, unless you were having a romantic date with your significant other. I wish for food that Rob will enjoy ( he loves ham!) and disposable plates. I wish for my family to be together and for the laughs (and once in a while, a roll or carrot!) to fly!
  3. I wish for tons of pictures to capture each moment – even the “boring” ones.
  4. I wish for an anxiety free day – whatever that looks like for you. For us, that means Casey and Rob have plenty of downtime at home between their dad’s house and my parents’ house. They get to relax and unwind.
  5. I wish for health for everyone. This year, especially, things might look a little different for you. We have small family dinners each year, so that’s our plan for this year. I hope between now and Friday, no one is sick or quarantined.
  6. Most of all, I wish for you – peace, acceptance and love. None of this may look like you once thought, but that doesn’t mean it still isn’t perfect for you.

Merry Christmas to each of you! Be happy, be safe and remember the reason for the season.

With hugs and love,
Jen

Posted on

Autism and a Christmas Party

Autism and a Christmas Party

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

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

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

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

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

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

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

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

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

Posted on

Autism and Christmas Challenges of the Past

Autism and Christmas Challenges of the Past

I have always loved Christmas. But, for many years, December was not always a magical month for us. Kids are always excited about Santa, but autism can throw a wrench into even the best laid plans.

For many years, as soon as Thanksgiving was over, Casey got irritable. Her meltdowns became even more frequent and even when she wasn’t melting, she was on edge. Knowing she was close to screaming kept me on eggshells, too. I knew she was excited about Santa. I knew she had a hard time waiting. What I didn’t know was what the actual problem was.

Everyone always asked her, “Have you been good this year?” Or said. “Santa won’t come if you aren’t good.” She is a literal thinker. I finally discovered – she was never sure she had been “good” enough for Santa to bring her gifts. She thought Mandy and Rob would get presents, but not her.

I won’t lie. I cried when I realized that. How terrible for her to think about that for a month every year and have no way of telling anyone why she was upset. And, of course, every time she got upset, she thought Santa was putting her on the “bad” list. Can you imagine wondering if you are good enough and not being able to talk about it?

To help with the waiting, we made paper chains and every night, they took turns tearing a link off. This was a very visible reminder of when Santa was coming. It helped Mandy, too. This might be worth a try for anything your child is looking forward to. We had calendars with changeable numbers to count down the days, but these really didn’t help Casey or Rob.

Buying gifts was easier when they were little. Rob loved anything with wheels. Casey didn’t play with toys like Mandy did, but she loved getting new ones. She had baby dolls and Barbies and while she didn’t play with them like Mandy did, she liked holding a baby and watching Mandy.

I tried to do Christmas crafts with them. Sometimes, it worked… Sometimes it was a disaster. Rob joined in because Mandy was. Casey might or might not. We baked cookies together. Again, it was hit or miss whether they would help. We didn’t go many places. Stores were loud, hot and crowded and with Rob’s sensory issues and Casey being irritable anyway… Nope, not happening. I shopped while they were in school.

Neither Casey or Rob could wait for anything for very long. We tried to visit Santa. Rob would have nothing to do with him. Casey couldn’t wait in long lines. Now, most malls have specified times for special needs families to see Santa and I think that is so wonderful! (This happens in a non-pandemic world. This year, Santa visits are very different if they happen at all.)

Last night, I saw proof again at how much they have changed. There was a local light display at our fairgrounds and they wanted to go. I knew it would be crowded (it was drive thru) so we left early. We still had to wait over an hour to get in. Casey did sigh deeply several times, but they were both okay waiting. (Honestly, I was more impatient than they wore – I knew we were less than 3 blocks from fairgrounds – no idea why traffic didn’t move when it opened.) I was so proud of them!

To make it even better, Casey got to see Santa and wave to him. (She was very concerned when our parade was canceled about seeing him) and Rob got to see Mater from the movie Cars. Plus lots of lights and inflatables.

Your Christmas season may not be what you want and hope for. But – that doesn’t make it a bad holiday! Instead of looking at others and wishing you could do what they do, start your own traditions. Make your family holiday memorable to you and stop comparing.

Because, there is one thing I am sure of – while you are looking at others and wishing your Christmas was like theirs, someone is looking at you and wishing their holiday could be like yours. Do you. Be unique. Be special!

Posted on

Autism and a Magical Holiday Season

Autism and a Magical Holiday Season

Maybe I’m the only one that feels like this, but this year, especially, I want to experience a truly magical holiday season. As anyone who knows me knows – I love Christmas! I love decorating and baking and cards and wrapping – even shopping. But – this year, I want Casey and Rob to really have a wonderful, special season. That’s not always easy when autism is in the family, but I’m determined.

I’ve never been one to leave shopping until the last minute, so honestly, I’ve only got a few things left to get. I’ve got everything for my baking (and the list from everyone of their favorite cookies!) and my Christmas cards are ready to be mailed. I plan on having fun and not rushing around and stressing over silly little details all month. Life has been too anxious for months. We have been doing awesome with all of the changes, but those changes are getting to Casey. She wants her usual magic – parades, dances, shopping. And most of these have been canceled.

So I’ve been on the hunt for things she and Rob would both like to do (and that’s not easy!) that are close to home and don’t cost too much. I have heard that a few towns near us are having parades, but I’m sure there will be huge crowds. Most of me knows it should be safe, but at the same time, why take a chance? Especially if Casey doesn’t realize it’s an option. 🙂 I have found several drive thru light displays near us and these are perfect! Casey gets to go, go, go – and Rob can stay safely in the car away from the crowds he hates.

She is telling me now everything she wants to do – and getting irritated that Anna’s not dancing in The Nutcracker and that we aren’t going to the Zoo Lights and that there isn’t a Christmas parade and how is she going to see Santa? (I haven’t figured that one out, yet – but I will! 🙂 ) So I have reminded her about the light display at the fairgrounds and the drive thru Nativity next weekend and that we are going to another drive thru display next week. She’s happy for now – until she thinks of something else that has been canceled.

This year has been rough on all of us. I’m taking the easy way out for as many things as I can. Instead of stressing about what to get Rob (Casey always provides a long, detailed list of wants!) Santa is bringing just what he loves – metal signs, Lincoln Logs (he finally told me he needed 5 big boxes of these!), Legos and playing cards to rip up. Two more Elmos, a huge pile of coloring books and more socks will be moving in with us.

And here’s another point – buy what your child loves and enjoys! Don’t listen to people who say things aren’t age appropriate! These gifts are to make your child happy – not some nosey neighbor. If your child loves socks (like someone I know!) buy packs of socks. Most 28 year old guys do not want Lincoln Logs. Rob does – that’s what he will get. Besides, I’m sure your child will look at some of the things you want and are thinking “Why would anyone want that?” 🙂

And another – accept what invitations you are comfortable with. Going to a party is supposed to be fun and relaxing. If you know it’s not a good idea for your child, then decline or try to find someone to stay with your child and take your other kids. (Yes – the guilt that comes when you do that really stinks, but your typical kids deserve special time with you, too. And – I learned that many times, Rob didn’t want to go anyway. He always had more fun with Grandpa Mack.)

If you are going to a party, plan ahead for your child’s needs. Bring food they like. Bring head phones, iPads, comfy toys. Whatever they need. Remember – someone who truly cares about you and your child will not care that you do. And anyone who does care isn’t worth your time and energy.

Look for special things around your area to do. Your idea of a perfect Christmas will not look like mine. Your ideas will be as unique as your family. Don’t compare and don’t let anyone tell you that your plans are not “fun.” Please don’t get discouraged if your child doesn’t enjoy your plans. Autism is always tricky – you can rarely be 100% sure your child will enjoy something. And -try new things! Rob always insists on the same little, old Christmas tree in his room – this year, he wanted two trees! You never know when your child will decide that new things/foods are safe to try.

Both Casey and Rob enjoy doing crafts (she flies through projects – he has to decide if they are worthy of his time and effort) and I have several easy ones planned. I have their favorite Christmas story books ready to read. Their trees are decorated and their stockings are hung. It’s time to relax, have fun and remember the true meaning of the season! 🙂

Posted on

Autism and My Odd Thankful List

Autism and My Odd Thankful List

Every year, the week of Thanksgiving, I share a list of what I’m thankful for. It’s an odd list, usually, because everyone knows I’m thankful for my kids, my family and friends and my dog. I share the “different” things I’m thankful for – the little things we sometimes take for granted.

1. I’m thankful that, so far, we are all healthy and that the cancellations of COVID have been taken in stride by Casey and Rob. Let me tell you – it wasn’t too long ago that major changes like this would have sent her into constant meltdowns and his anxiety through the roof. While she is getting a little irritated by what’s cancelled (the Christmas parade and camp weekend this week), she’s still being calm.

2. I’m thankful there is a young man on eBay that sells Legos by the shape and color you want. Rob absolutely loves the squares that are yellow and blue and the green and brown rectangles. I can buy each by the pound.

3. I’m thankful that neither of them mind wearing masks. They actually handle it better than me.

4. I’m thankful for all of the crafts and pictures they have been making at Hopewell. While Casey won’t share hers (they have to go in a basket in her room) Rob will share a few. Some must be hung in his room, though.

5. I’m thankful that what they “need” to buy when we go to the store are cheap and easy to find almost anywhere. Coloring books, socks, playing cards, construction paper – all things that make Casey and Rob happy.

6. I’m thankful that some of their super strict routines can be changed without drastic results. (Though, honestly, their evening routine isn’t one I mess with much – I need my sleep! ☺)

7. I’m thankful most junk mail is the perfect consistency he wants to rip up. He rarely rips magazines, anymore, but will grab them to add to his growing collection. So I limit what comes in the house because it’s nearly impossible to get rid of any without him knowing. (How do they DO that???)

8. I’m thankful for his bear hugs and her gentle not-quite-a-hug hugs. (She usually puts her hands on the other person’s shoulders and leans forward.) In pictures, he always throws his arms around people, while she keeps her hands together.

9. I’m thankful they will both fold their own laundry – hers, very precise, his, not so much. ☺

10. I’m thankful for what autism has brought into my life. Not the sleepless nights or meltdowns or other challenges, but the friends I would have never made. The confidence I gained from dealing with doctors and other professionals. The childlike wonder that will never leave our home. The ability to see the world differently – to see only the good and the beauty.

And I’m thankful for each of you that takes the time to read our story each week and follow our circus on Facebook.

Have a Happy and safe Thanksgiving! Look for your little, odd things to be thankful for!

Posted on

Autism and the Toughest Judge of Me

Autism and the Toughest Judge of Me

Don’t deny it. At some point in your life, you have judged someone. Whether it was for their choice of jobs or love or clothing – you have done it. I’m not proud of it, and I am working hard at not doing it, but I have judged others. I’ve heard judgments others have said about me. Before we go any farther, let me say – nothing anyone can say about me will be a surprise, I don’t particularly care what they think, and I’m tougher on myself than anyone else will ever be.

I made a lot of mistakes as far as autism goes. There simply wasn’t a lot of information when Casey was diagnosed so, for the most part, my expectations for her were the same as if she was typical. In some ways, I think that helped – it never occurred to me that she couldn’t be potty trained, so we never gave up. It never occurred to me that she might not be able to use forks and spoons properly. It was a struggle, but we kept going. I’ve often thought that if I had read some of these really scary books before she was diagnosed, she wouldn’t have come as far as she has.

Why wasn’t Rob diagnosed as early as she was? Simple – he was completely the opposite of her. Even our doctors weren’t concerned. He had almost constant ear infections and they attributed his lack of speech to those. He didn’t have meltdowns or sensory issues or the desperate need for routine she did. He simply didn’t say much. (he also had Mandy – she talked for him for years!) Didn’t I know he might have gotten more help if he had been diagnosed? Well, duh! But – his lack of speech put him in the same preschool/speech program that Casey went to. An earlier diagnosis wouldn’t have helped much.

The list of why I did what I did would do on for miles. I don’t owe anyone an explanation for my choices. I second guess myself enough.

Was I too lenient on them when they were little? Maybe I didn’t expose them to enough new experiences. Maybe I should have made Rob try more things. Maybe I didn’t handle Casey’s meltdowns the right way. Maybe I still don’t. Maybe I shouldn’t have given in to his need to wear certain types of shirts. Maybe I should have tried to break her routines. Maybe I set the routines myself because it worked. Maybe I didn’t work with them enough when they were in school. Maybe I should be working with them more now with speech.

Maybe I shouldn’t be telling them when to go to bed? After all, they are adults. Maybe I should make them do more around the house? (they both have chores they do, but I’m sure it could be more.) Maybe I’m not doing enough to help them lose weight? Maybe I don’t engage with them enough?

See? The list goes on and on. I know, at times, I have over-reacted to things that have happened with Casey and Rob. Honestly, when I’m tired, the smallest thing can be the last straw. I don’t really like being the parent everyone dreads to call with bad news. But, it is what it is. I apologize when I need to. I don’t when I did nothing but defend Casey and Rob.

I’m sure other parents are like me. It doesn’t matter what you think – they are already tougher on themselves and their choices than you will ever be. I can sit here and think “I would never…” forever, but I truly don’t know what I would do if I lived in that person’s shoes. You don’t, either. You can say, “I would never let my child meltdown in public.” but if your child has sensory issues, it will probably happen. Maybe, instead, you should think “Thank God my child’s senses aren’t as affected by autism.”

You can say, “My child would never be allowed to be up all night.” Maybe, instead, you can be grateful that your child sleeps. “I would never let my child be aggressive.” Be thankful you don’t have to deal with this – thousands of families live with this every day. Instead of judging other autism parents (or anyone!) be grateful that you don’t have to deal with what they live with every day. Every person with autism is unique and so are their families.

I’m not sure why we feel the need to judge other families. Maybe to make our lives seem better? Our parenting better? Whatever the reason, we need to stop judging and start being grateful for our own lives. Trust me – someone always has it worse than you do. I know I’ll never live up to my own expectations – I definitely don’t need someone else pointing out what I’ve done wrong.

Be supportive and be thankful.

Posted on

Autism and Planning for the Unexpected

Autism and Planning for the Unexpected

I think I’ve got good plans in place for emergencies. I’ve got extra meds (except one- it’s “controlled” and I can get it even one day early 🙁 ) food and water. We’ve had a few weather emergencies and I know Casey and Rob will get up quickly and go to the basement. I feel like I’ve thought of everything I can.

Wednesday reminded me that no matter how much you plan, something will pop up to teach you that you aren’t ready. And really, it wasn’t that big of a deal.

I was having severe pain in my lower right side and my doctor wanted an immediate CT scan to check my appendix. I had to drink two bottles of water/dye before and, as I was sitting in the health plex, my mind was racing.

Rob was going to be out of that med Thursday morning. Who was going to order and pick it up? If I had to stay in hospital, how would their lunches get packed (they are both very particular about what is in their lunches)? Where would they sleep? I needed to do laundry. I promised Rob a haircut and Casey a walk. The thoughts were racing.

Now, honestly, none of that should have been bothering me. Mandy and Cory, Mom and Dad, Jeff and Tracie would have jumped in to help. But – I was in pain and trying desperately not to throw up. And tired from not sleeping much the night before. So, of course, everything looked worse than it actually was. But – isn’t that how autism is sometimes? It just catches you off guard and little things become huge things. Something as simple as a lunch packed with the wrong things can trigger a meltdown or an anxiety attack.

No matter how we plan (and seriously, very few people plan better than an autism parent!) something will always show us that we just can’t control everything. Which really stinks when you live with people who need things to be controlled and the same. I do my best not to let Casey and Rob get too into their routines, but it happens. Our evening routine changed two nights a few weeks ago and I was so excited that even with the differences, they both went to sleep.

I am lucky. I have family and friends that can jump in and help me. (Not that I don’t still freak out – Mandy likes to tell me to chill out. 🙂 ) But, I can still plan a little better. I can’t change when the medicines can be filled, but I can write down what they like in their lunches. I have their med lists written down and it’s in the tray with their medicines so anyone can give them the right doses. I have written their schedules in this blog – but mostly, just so people can understand just how crazy our lives are at times. 🙂

I also know that Rob and Casey are more relaxed than many people with autism. This happened only in the last few years so don’t give up hope that your child will relax, too! But still, they like their routines. Rob’s anxiety might be rough if he isn’t sure what is happening. So I struggle to be as organized as possible for them. Honestly, as long as they are with grandma and grandpa or Mandy and Cory, Casey and Rob will probably just go with the flow instead of getting anxious.

But – my advice to you is to plan! Write down your child’s preference in clothing and food. Write down a detailed schedule that your child follows each day. Write down what medications they take and the times and doses. Make a note of what your child likes in their backpack for school and in their lunch. Detail their bedtime routine and what they like to sleep with (such as a fan, nightlight, music, stuffed animals). I also have our doctor phone numbers and their insurance info where it can be easily found. Write down anything that you think might be helpful for someone who is taking care of your child in the event of an emergency.

Sometimes, I’m sure I over – plan (and Mandy is nodding as she reads this! 🙂 ) but it makes me feel better that if someone needs to step in and take care of Casey and Rob, they will have the information they need to keep Rob and Casey happy and safe. I’ll keep making too many notes just to ease my own mind.

You can use a simple notebook to make your lists. Just make sure that you put it somewhere that it can be found easily. Trust me – you will feel better knowing those tiny, but so important, details are written down!

Posted on

Autism and the Perfect Storm Weekend

Autism and the Perfect Storm Weekend

You all know what this weekend brought to us – a blue moon (second full moon this month!), Halloween, the time change and crazy wind. I’ll be the first to admit I was dreading this weekend. Earlier in the week, Casey was irritable and Rob was anxious and loud at times. I knew it was the effects of a moon that wasn’t even full, yet.

The last six times we had to change the clocks, Rob spend that Sunday in Casey’s room yelling his long black train anxiety song for hours – like all freaking day with breaks only to eat and shower. I was almost in tears thinking about that happening today. It’s amazing how stressed a body can get listening to the same phrase 2 – 3 times a minute for 12 hours. I was tense this morning before he even woke up. I was even hoping he would sleep in a little later, even knowing that might mean he would have a hard time going to sleep tonight.

Casey wanted everything she thinks needs to happen for it to be the “right” Halloween. But – there was no dance. She was okay with this as I decided to have a Halloween party (just for a few family) but she was concerned about trick or treat and carving her pumpkin. I’m not sure why carving the pumpkins was on her mind, but she asked many times and every time, I told her we would do it on Thursday. They both enjoyed carving (and were done in about 10 minutes – the same faces every year! 🙂 ) and she started asking about a party at Hopewell and the treats she wanted to take.

I had already dropped off the treats they each wanted to take, so she switched to the costume she was going to wear. Since her fairy costume had many pieces, I told her it would be best to choose a different costume for Friday so she would have everything for Saturday night. This worked and finally, Friday, she seemed to calm down and be okay.

Rob had moments of anxiety, but nothing too bad through the week. I knew the weekend would be the hardest on both of them, but Saturday was fine. She was excited about passing out candy to trick or treaters (thank God a few showed up – we only had about 15!) while wearing her fairy costume. He couldn’t have cared less about the little kids, nor did he want to put his clown suit on. When he saw others in costume, he put on his clown hat and tie for a few minutes, but then he disappeared into his room to build Christmas trees with Legos. He didn’t even try to get any food.

I kept them up a little later last night in the hopes that they would sleep in today. She was up and down all night, but thankfully, didn’t wake anyone but me up. After he went to sleep, he came to find me to tell me his toe hurt. I have no idea what he did but he wanted medicine and a band aid and went back to sleep. Last night was fun – being around my family always makes me so happy. We laugh and tease each other constantly, but they are my biggest supporters. 🙂

I was busy when they finally woke up and could feel myself tense up when Rob came to me for his pills and breakfast. But, he leaned on me for a minute, patted my head and went back to his room. I went on cleaning, but I was still tense – just waiting for him to run upstairs and start yelling. And…. it didn’t happen. Let me say that again…. it… didn’t… happen. He played with his iPad, built more trees and had lunch.

Then he took a nap. I was worried he was sick, but he said he was tired. I put more medicine on his toe (he has a small cut on it) and let him sleep. When he woke up, I thought the long black training would start, but it didn’t. I could finally feel myself relax a little. Even though his habit of time change weekend has been the same for the last three years, today, so far, he is fine. Even with the wind threatening to blow us away, he is fine. He hates weather changes and today, it’s blowing and rainy, then blowing and sunny and then back to rain. And he seems fine. Thank you, God!

So here’s what I want you to remember from this post. On your terrible, rough days, remember things will change. Your child will suddenly decide not to do whatever it is that drives you crazy. It won’t be on your time frame, certainly, but it will happen. You don’t have to think about how you will handle this in the future because, trust me, they will think of something different. Just to keep you on your toes, of course.

During the times you are simply exhausted and frustrated with a world that can’t or won’t understand your amazing child, take a deep breath and know that changes will happen – usually when you don’t expect it. I never dreamed that Rob’s time change habit would change during a weekend of complete upheaval with a holiday, a full moon and crazy weather, but it did. I don’t care why. I’m just so glad it did. I’m so glad I could let go of the tension and take a few deep breaths.

I wish I could snap my fingers and relieve your stress, but I don’t have any magic. I don’t have any words of wisdom that will help your child instantly. All I can offer is hope from someone who has “been there, done that.” I know it isn’t much, but please, never give up hope. Your child may change as quickly and as unexpectedly as Rob’s time change habit!