Month: November 2021

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Autism and the Wild and Wonderful Holiday Season

Autism and the Wild and Wonderful Holiday Season

The holiday season is full of so many fun and amazing events, but for those of us with a special needs family member, it might not be the kind of excitement you think of. It can be a painful, stressful and scary time for those with sensory needs or the need to keep a set routine. Even school schedules change during this month! And, as we all know, if autism makes life difficult for one, it affects every one in the family.

The holiday season is the time to relax your standards and focus on having fun with your child – whatever that fun might be. Whether you are able to visit Christmas light displays or special holiday events at your local library is something only you will know. I would also encourage you to try new things, but to be okay if it doesn’t work out. Stop in a party for 5 minutes. Go to a candle lighting. Go to a parade. The thing is – you never know when your child will surprise you with a new skill or ability to go somewhere.

If you know your child can’t handle the change in routine or the noise of going somewhere, plan special things at home. Make a mess making cookies or have a family movie night. All of my kids used to love bringing sleeping bags and pillows into the living room and watching a movie together. Each of them got to request a special snack for the movie and they slept in the living room together when the movie was over.

Try to create a special ornament. If you aren’t crafty, or your child has fine motor troubles, look for a craft kit that has everything you need. There are so many options of ones that are foams pieces that are stickers. All you have to do is peel the back and let your child create special gifts for everyone. These are pretty reasonably priced, too! Or you can mix up salt dough and let your child squeeze and mold whatever they like. Both of these activities offer occupational therapy benefits, too!

Make a paper chain to help your child understand how long it will be before Santa comes. Or how long he/she will be out of school. Again, let your child help! I know it’s easier to do it yourself, but your child needs to try – and needs you to encourage him/her that they can do anything they want. Some stores sell paper strips that have a sticky spot on one end to make the loops.

The whole point is to make your holiday a happy one – one that is perfect for your family. It may not look like the “picture perfect” one that Hallmark promotes, but that doesn’t mean it won’t be amazing. Instead of thinking about all you might be missing, think of what you may be missing that you didn’t want to do anyway. Business party? sorry – no one to stay with my child with autism. Extended family party (you know – the ones where you only see these people at Christmas) – sorry, it’s too loud for my little one. (And – you also get to avoid those family members who want to tell you everything you are doing wrong for your child!)

While a lot of what I’m sharing here is things to do at home, I really do encourage you to take your child new places. Trust me – I know the stares you may get are hard to handle, but really – what does it matter what those people think? I’m sure every single person who makes a negative comment about your child has something about them that you could comment on. It takes a while, but after so many years, I honestly couldn’t care less about what people are thinking or saying. It’s their problem, not mine. And if I’m trying to help Casey or Rob, I don’t let anyone distract me from that.

If you are new to the autism journey, you may feel that you will never be able to handle the stares or comments, but you will. You’ll develop a thick skin and a look that could kill a snack. Go out and enjoy everything the holiday season has to offer you and your child. Plan for short trips and stay as long as you are all happy and comfortable! You can do it and your child will learn and adapt. Sometimes, it takes years, sometimes, you will be surprised. Don’t let autism rob you of a wonderful Christmas season!

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Autism and a Rough Week

Autism and a Rough Week

I am still a firm believer that whoever decided we need to change the clocks twice a year need to live with a person with autism for a week after their decision and see just how much it messes up lives. It’s been a rough week here (and I’ve heard from other moms that their weeks haven’t been very good, either). I wish I could completely blame our week on the time change, but unfortunately, I think it’s more that I missed signs that Rob and Casey needed help.

I mentioned last week about Casey’s behaviors being out of control a few evenings and that she is just on edge. She is doing better, but is still fixating on things. She wants laundry done every day. She wants her PJs in the bathroom as soon as she gets up in the mornings. She is getting up in the middle of the night to put the clothes she is planning on wearing in the bathroom. It’s been getting worse and I just missed it.

Rob has been slowly changing. He’s a louder at home and needs his verbal stims to calm his anxiety. Unfortunately for the rest of us, he needs to yell some of his phrases at certain points. He’s anxious and obsessed about getting things to cut and rip up which caused issues at his day hab. He wants tight hugs – and to be left alone. And it all happened so slowly, I missed it.

I’ll admit – I’ve been too focused on my own grief and the pain in my foot. I just missed the signs that Casey and Rob needed help, especially Rob. Yes, he got louder, but it didn’t seem to be too bad. Casey is more obvious when she needs help – Rob withdraws. And I didn’t see it.

After the issues at his day hab, I realized that he has been struggling for weeks, too. He may not be able to voice his grief and anxiety about losing the baby, but he feels it – and he definitely knows that I’ve been crying. Everyone around him has been upset for over a month. He is so sensitive to what people around him are feeling – I was just dumb for not realizing he was feeling it, too. It breaks my heart that I didn’t realize it. If it hadn’t been for autism, he would have been able to share his feelings. And some days, autism just sucks.

At their last doctor visit, we made the decision to reduce meds for each of them. It was the right decision at the time and they were doing well. We lost Raylan less than two weeks later. I should have immediately bumped their meds back up, but honestly, I just didn’t think of it. I didn’t think of much of anything that week but just getting through. I couldn’t see Mandy and Cory (no visitors at the hospital) and they were all I could think about.

A few days ago, I put them back on their full doses of meds. Casey said she was okay with her little pill, but I can see she isn’t. While I know it takes a while for Rob’s to build back up (and his reduction was much larger than hers!) he seems more like himself already. He is sleeping better and that will help if nothing else. He even happily put on a new shirt (a hoodie – I haven’t seen him in a hoodie since he was a little guy!) and smiled for our family pictures yesterday. He even seemed to enjoy it.

I’m sure we still have some rough times coming, but I do think this is the best for both of them right now. I can try to reduce their meds again in January or February, when life settles down a little and our loss is a little less painful. Trying new doses or medications is never a favorite or easy thing to do. It’s so hard to know if any changes that are seen are from the medication or just life itself. It’s always a guessing game – a gamble. But one that is necessary in our lives.

I know many people are completely against giving their child medicine for behaviors or anxiety. I understand that, but – would you withhold medication for a heart problem or diabetes? It’s the same thing – their body needs help and as their parent, you need to understand that your child on medication is not an issue of bad parenting, but rather a body that needs help. I am in no way saying medication is always the best choice, but if you have exhausted every other option, don’t refuse to consider it.

Casey and Rob are both happier when their meds are working. They both know their pills help them and will just stare at me if their pills aren’t ready for them at the expected times. They may not be able to verbally tell me, but their actions let me know. And that’s all I need.

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Autism and Awesome Surprises

Autism and Awesome Surprises

This has been an up and down week. I ended up in a boot for an injury from a few months ago, Casey had a really rough evening a few nights ago, today was supposed to be the baby shower and the time change. Despite all of that, I just had something happen that proves again that autism can always surprise you in good ways!

Rob has had a few loud days this week, but nothing that would make me want to increase his meds back to what they were. But, my little guy has shown his sense of humor, his wonderful singing voice and an even better surprise this week, too!

One day when I went to pick them up, a staff person came out with them, so I knew something had happened. It turns out Rob had taken a deck of cards and wouldn’t give them back to staff. I looked at him, said “give me the cards” and he opened his lunch box and handed them to me. I was surprised he handed them over so quickly, but didn’t really think much about it beyond maybe he was growing up a little.

Until we got home and he rushed to his room – to pout, I assumed. When I noticed he hadn’t even stopped to get his pills and snack, I peeked in his room to see him dump out another (bigger!) deck of cards! The little turkey happily gave me the smaller set and kept the larger one for himself. While I did take them away and told him he had to take them back the next morning, I had to giggle to myself that he thought things through so quickly that he kept the larger one for himself and handed over the smaller deck. That’s a lot to think through – especially when I was waiting for him to hand the cards over in the parking lot. 🙂

As we were coming home one evening, Alabama’s “Dancing, Shagging on the Boulevard” was on the radio and Casey and Rob were both dancing in the car. When we got home, I heard Rob singing “Dancing, shaking that big ole barn!” 🙂 He rarely sings when I can hear him and I wish he would do it more – he has a beautiful singing voice – just like Casey does! 🙂

But, really, the coolest thing of all just happened a little while ago. Every year, I struggle to think of what he might like for Christmas. He will only say he wants “presents” with no comments beyond that. So, I guess what might make him happy and hope for the best. Today, though – today! He wrote a letter to Santa! The first one he’s ever written! I’m so excited and happy. It took 29 years – but it did happen!

And this proves what I’ve been saying for years – you never know when something will click and your child will have a new skill! It’s hard to be patient. It’s hard to keep going over and over and over the same things every day and not be exhausted. It’s hard not to be impatient and discouraged. I get it. I struggle with that every day, too, but it’s days like today that remind me all of that hard work is worth it. Honestly, Rob didn’t see the big deal in writing his letter – he looked at me like I had lost my mind. (And yeah – he might be close to the truth there! 🙂 )

And now, something else. Casey is struggling. Today was supposed to be Raylan’s baby shower and she’s having a hard time with not being an auntie today or having the shower. She had a major meltdown a few nights ago and is close to one again. She is laying on the couch listening to Christmas music as she tries not to cry. Rob just came in and sat down close to her and said, “It’s alright, Casey. It’s okay, Casey.” I could cry – usually when she’s upset, he laughs at her and says something like “no fits, Casey!” just to make her even angrier.

So please – keep dreaming for your child. Keep fighting for what they need. Keep your faith that one day, they will gain the skills that you are working on so hard right now. You never know when your surprise will come!