Category: autism medication

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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 Changing Medications

Autism and Changing Medications

Casey and Rob both got glowing comments from their doctor last week. He was so happy with their progress and loved that when he walked in the room, Casey looked up and said, “Hi Max!” (his first name! 🙂 ) I reminded her that she needs to call him Dr. Wiznitzer, but he laughed and said she could call him anything she wanted.

During their visit, we decided to try lowering Casey’s medications again. We made a huge jump over the last year in the amount she takes and are hoping she can continue to wean off of it as it is one that can increase her appetite. She doesn’t seem to have an opinion one way or the other, but when I told her Friday morning she only needed half of the pill, she looked at me and said “Not sick?” Honestly, that broke my heart – that she has been thinking she needs to take pills because she is sick.

So we had a short and sweet talk about how taking pills doesn’t always mean you are sick – that sometimes, pills help your brain work better. I told her the white pill helps keep her from getting upset. She couldn’t have cared less – she only wanted her yogurt and her iPad. But, at least I tried.

I knew the doctor would want to talk about reducing Rob’s, too. He’s been pretty stable for about two years, so it was time, but man – I’m worried. His anxiety can be ugly and painful and I’m honestly scared to death about lowering one of them. But – I don’t want him taking medications he doesn’t need anymore, so we’re going to try. Slowly. Right now, three of his medications can cause weight gain, so for his health, we need to lower them, if possible. Slowly. Can I repeat that?? Slowly!

Finding the right dose for medications is so hard. Most of the time, several medications need to be tried until you find the one that works without making the person feel “off.” And then increasing the level until you see they are helping. It’s a frustrating process.

And lowering them is just as hard. How do I know if Rob’s anxiety is caused by the lower dose or the full moon? Or the wind? Or something that happened that he can’t tell me about? How do I know if he is talking more because he’s trying to ease anxiety or just because it’s a beautiful day and he wants to sing? Is Casey getting irritable because of the lower dose or is she just having a bad day? (And – let’s not forget – autism or not, people have bad days!)

I know that I won’t see any difference in them, yet. It’s only been a few days and the medications need to work out of their systems, but I’m dreading the next few weeks. I’m tired just thinking about it. Should I be? No, of course not – all I have to do is give them their previous doses. The doctor was quite clear on that – I don’t even need to call him back. Just give it to them.

No – I’m tired knowing that I can never be sure why they are acting the way they do. I can’t be sure it’s the lower medication. I’m tired thinking of them not sleeping or of his anxiety or her getting irritated at the smallest thing. I’m tired before I need to be. That’s the thing with being a parent to someone who can’t easily communicate their needs – every thing I do is a guess. Sure, sometimes, now, they tell me when they are sick and need to see a doctor. But will they be able to tell me that they feel better with more of their medication? Probably not.

It will work out of their system so slowly, they may not even feel it – until the irritation and anxiety show up. And, if it does show up, I still need to wait a few days to see if it’s just a bad day or whether the meds need to be bumped back up. I think Casey will be okay with the lower dose – and it is much easier with her. Her irritation is obvious.

With Rob – it’s hard. He loves to vocally-stim. Which is what he does – louder – when his anxiety is high. It won’t be as easy to see. I’m tired just thinking about what the next several weeks might be like. I’m trying to ignore the negative and think positive! But, I’m also a realist – I’ve been through medication changes too many times to think they are always for the best. Fingers crossed!

What I want you to remember is that you know your child better than the doctor does. Listen to his/her advice, but make sure you share your thoughts! Do some research on the medications that are mentioned – ask your pharmacist questions, too. If you aren’t comfortable with a medicine, ask what other options there are. And if your doctor won’t listen to you, find another doctor. You have long journey ahead of you – you need a doctor you can trust and who is willing to listen to your thoughts. Write down your child’s behaviors when you start the medicine and keep a journal – that is the best way to know if the medication is working. Trust me – you won’t remember as much as you think you will.

Wish us luck. Maybe send a twelve pack of Coke and some dark chocolate our way. I may need it! 🙂

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Autism and Medicine Changes

Autism and Medicine Changes

At their doctor appointment a few weeks ago, the neurologist and I decided to reduce one of Casey’s medications. We did it last year and she had no issues and were hoping this year would be the same. This medication can cause an increase in appetite and weight gain, so lowering it would be wonderful. Plus – as grateful as I am that their medications help them, I would love to reduce the amount for both Casey and Rob.

So, at bedtime, I reduced one of her medications by half a milligram. Not much, but thoughts of her being upset all of the time were in my mind. Until we figured out the best medications for her when she was younger, she was not a happy child. Meltdowns were terrible and while some were definitely sensory related, others were simply because life didn’t go as she wanted. She needed a strict routine with no changes. And life simply doesn’t work that way.

Last year, their appointment was after our county fair. For those who have followed us for a while, you know how important the fair is to both Casey and Rob. Those days of riding rides were amazing to them. The rides decreased Rob’s anxiety and helped his proprioceptive senses calm. The more a rides spins, the better they like it. And the fair was somewhere they could both enjoy, despite the crowds and the noise, up to a point. I always knew when it was time to go because they starting shutting down. Their eyes told me.

So, the last time we tried a med change, it was after a week of fair and their Halloween dance was in a few weeks. Life was good – it was as it was supposed to be.

Which brings us to this year. Their appointment was before our fair is usually scheduled. By then, both of them knew the fair was canceled, but Casey hadn’t really accepted that there wouldn’t be a fair. She understood “cancel” but she was still hoping. They have given up so much this year – this seemed to be the last straw for her.

So I reduced the med and started watching for reactions. I knew it would take at least a week (this medication builds up in the body) before I would see much of a change. The day after their appointment was the day the fair usually starts. And Casey was irritable. Not full blown meltdowns or even screams, just irritable and on edge. I knew it couldn’t have been the med that quick and tried to reassure her that we had lots of fun stuff planned for October.

They both had fun shopping that weekend and picking out the rest of their Halloween costume pieces. We talked about our Halloween party (since the dance was canceled, I thought we would have a small party so they would have somewhere to wear their costumes.) We talked about going hiking and seeing the pretty leaves. They both were happy.

But, she is still on edge. She wants the fair. She wants her dance. She wants to clean up the fairgrounds and look at Christmas lights and go to Mandy’s and go see scarecrows and go swimming and go to McDonald’s. She is jumping from one thing to the next and is fixated on odd events – like cleaning up the fairgrounds. I’m not even sure what she means. Unless it is that there were food stands there and she saw trash. (they did get some “fair food” one evening.)

My concern now is – are her fixations from the medication reductions or is she just fed up with all of the changes? Is it because she desperately loves the fair and looks forward to it all year? Or is the smaller amount of med too little? I want to wait a while before I give her the med back. I’m so hopeful that the farther we get from “fair” week, the happier she will be.

I miss my giggly, goofy girl. She still is, to a point, but that edginess is there and pops up at strange times. Ten minutes ago, she was repeating phrases over and over, trying to get me to tell her when we would go look at Christmas lights and now she is giggling at Elmo on her iPad. So, we wait and see.

I hate medication changes. It’s nearly impossible to guess whether the medication is needed or she just needs time to adjust to life with COVID. Medicines rarely have immediate effects. Many have to build up over 2 – 3 weeks. The waiting game is hard – is it helping because they are happy or has something happened that makes them happy that they can’t tell me? Is it not helping or has something else happened that they can’t explain. I don’t like the guessing game – or the waiting game. And, unfortunately, medication changes are both.

Unless she gets increasingly irritable or edgy, I’m going to wait until November to make any changes. That will give her body plenty of time to adjust and we will be far away from fair week and through Halloween. I don’t know what else to do but wait, as decreasing the med will be so beneficial to her, if it is possible.

My best advice to you if you need to start or change a medication is to keep a detailed diary of what happens. Write down any behaviors (irritability, inability to sleep, increase or decrease in appetite), but also include any changes that happen at school or in your home. Write down the weather – every detail of your child’s day. That will help you determine whether the med is helping or not. It’s time consuming, but it is needed. You can also do this to help determine if your child needs to start a medication. It will help your doctor to see exactly what your child’s day is like.

For me, I’ll make a list of things to tell Casey we can do and try to keep her mind off of the things we can’t. And wait and see how she feels in a few weeks.

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How to Help your Child with Autism Sleep

How to Help your Child with Autism Sleep

Autism and sleeping as been a big topic of discussion on our Facebook page the last few days.  One mom asked for some advice and so many offered ideas for what helped their child sleep.  Be sure to check out that post – there are a lot of ideas that I had never heard of, but parents are having success with each of them.

When Casey was a toddler, she would “sneak” out of bed and down the hall to lay by the living room door.  Of course, I never noticed the little green ghost carrying three teddy bears as she ran by me.  🙂  When she did finally go to sleep, she stayed asleep all night.  Now, I think that she was lonely.  Mandy was just  a baby and was sleeping in my room in her crib (because I didn’t want her crying to wake Casey).  As soon as Mandy moved into Casey’s room, she stayed put…. but not necessarily asleep, as she loved to peek in Mandy’s crib and giggle at her.

After Casey got her autism diagnosis, she managed to switch her days and nights – meaning she wanted to sleep all day and be up all night.  She slept at school when she could and on the days when she didn’t have school, I spent my days fighting to keep her awake. (she would hide to sleep – or even lay in the middle of the backyard and curl up!) But even if I did keep her up all day, she still wanted to be up all night, too.  Those were some long nights, but finally, she adjusted herself.

Rob slept through the night as a toddler, but then decided that he wouldn’t sleep in his room at all.  I am guessing he had a bad dream and associated it with his room.  Every night, as soon as he could, he grabbed a pile of blankets and either came to my room to sleep on the floor or he went into the girls’ room and slept there.  For years, he slept on the floor.  I know at times, it drove Mandy crazy, as she got tired of him being there, but Casey never said much about it.

And then it happened.  Rob couldn’t go to sleep.  When he did finally crash, he didn’t stay asleep.  He was up and down all night – singing, playing, opening and shutting doors.  I was grateful that, unlike others with autism, he never tried to leave the house or get into anything dangerous.  He just wandered – checked on the girls, checked on me and laid on his bed and “sang.”

He had piles of blankets – a nightlight – a fan – and a CD player that played the same song over and over and over ALL NIGHT.  If I turned it down or off, he would wake up.  If I turned the light off in the kitchen, he would wake up.  His door had to be open – the closet door had to be open.  And still he sang and wandered.

I can go one night without sleep without too many negative affects.  After so many, I started falling asleep, even if he was wandering – I just couldn’t stay awake any more.  After a while, my body adjusted to little sleep, but I still wasn’t in great shape!  He stopped watching TV before bed time – he didn’t have any electronics at that point in time.  He just couldn’t relax enough to sleep and he didn’t sleep during the day to make up for it.  He just didn’t need much sleep.

But his lack of sleep was causing him to gain weight and I knew it was having other affects on his body.  I talked to his doctor and we tried melatonin.  For a while, it worked really well, but then it stopped helping.  We finally decided his anxiety levels were causing him to be unable to sleep, so we tried anxiety meds.

After many, many years and many tries/fails, he is sleeping through the night.  And since he is sleeping, his anxiety levels are dropping and he is able to try new things.  He also is less likely to overeat.  I can tell him he’s had enough and he’s okay with that.

We have an evening routine that, to be honest, I don’t mess with much.  Casey takes her bath, then he has a shower.  She has her pills and a snack while he showers, then he gets his.  They either play with iPads, rip cardboard or color an hour or so and then go to bed.  We don’t do any exercising after baths – they don’t drink any caffeine (especially Casey – one glass of iced tea at supper will keep her up all night!).  The TV is on, but they don’t watch it often.

They both have fans and nightlights in their rooms.  Right now, they each have a window air conditioner (we have central air, but Casey’s room doesn’t get cool enough and the colder it is, the better Rob sleeps.)  I’ll leave the AC’s in as long as possible, just for the sleeping aide.  I don’t usually take them out until mid-October, especially Rob’s. Casey is okay for hers to come out as soon as the weather cools off – she doesn’t need the noise.

Casey sleeps with several blankets and turns a video on her TV before she goes to sleep.  She has a digital picture frame that is on all night and she sleeps with a stuffed toy.  Most nights, she is asleep by 9:45 or 10.  Once in a while, she has a hard time sleeping and she may be up most of the night.  On those nights, I have to keep telling her to stop dancing in her room.  Her thumping/jumping is right above my head!

Rob has three heavy duty sleeping bags, three really heavy blankets, two extra large lighter weight blankets, and more small fleece ones (8 – 10 is a conservative guess).  He has four pillows and doesn’t sleep with his head flat on the bed – he is often on his stomach with his forehead pressed against the wall, sound asleep.  He needs his fan and night light, but now, his door must be closed and the kitchen light off.  He doesn’t listen to music anymore and doesn’t turn on the TV.  Often, he goes to bed as soon as he realizes Casey has (monkey see, monkey do – comes in handy at times!).  Many nights, he sings for a little while, but is usually asleep by 10:30.  He needs his medications to help him.

So ideas to try:

  • melatonin – you can buy it at Walmart in extended release tablets if your child will go to sleep, but can’t stay asleep.
  • weighted blankets – or just lots of them.
  • sound machine or a fan
  • some people use essential oils such as lavender to help their child relax.  My kids are both too sensitive to odors to try this, though.
  • A simple routine – warm bath, a book, no exciting TV, and a snack (you will have to play around with your routine to see what works for your child.)
  • I just read that an Epsom salt bath could help and that you can also buy magnesium rubs to help your child relax.
  • CBD oil – but talk to your doctor first and be sure it’s legal in your state!
  • turn off all electronic devices a few hours before bed
  • quiet activity, such as coloring or reading, if possible.

Please remember to only change one thing at a time!  If you change a bunch, you won’t know what really helped your child.  If all else fails, talk to your child’s doctor about sleeping aides.  Trust me, I understand that you don’t want to give your child medication unless you have to, but sometimes, you have to – for their sake and the rest of the family!  You can’t be the best parent to your child if you are a walking zombie every day and it will become a safety issue.

 

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Autism, Medication and How to Know What’s Right

Autism medication

A few days ago, I had to pick up prescription refills for Casey and Rob.  As I picked up the bags, the woman behind me made a comment about the number of prescriptions I had picked up.  I was immediately irritated – not just because of her comment, but because she was right behind me, not behind the “privacy” line.

I managed to walk by and only glare at her.  So many words were flying around my head, but I kept my mouth closed.  But, it did remind me of a day a long time ago where a woman decided to tell me how terrible I was to “drug” my kids.

At that time, Casey was on medication, but not Rob.  He was a teen before he needed the help, while she was in elementary school.  Her outbursts were becoming out of control and self-injurious.  Her doctor had given me medication to try as she was getting upset, but she blew up so quickly, I rarely had enough warning to get them into her.

So, after a particularly bad weekend, I called her doctor and basically said, “Drug her or me.  I don’t care which.”  I know it sounds terrible, but I was going on days with no sleep and constant screaming and head banging.  I couldn’t handle it anymore.  I needed sleep – she needed sleep.  We needed to be able to cuddle together.

It wasn’t easy to make that decision.  I had been putting it off for a while, but the breaking point came.  It took a long time to find the right medication for her.  Even now, I dread thinking about making any changes to either of the kids’ medications.  Increasing the amounts can have drastic effects – good or bad – and I’m on edge whenever we need to do that.

It’s hard to tell whether a behavior is getting better because of the medication or maybe something else.  Rob’s anxiety is especially hard to judge because so many things could be causing the anxiety – maybe he was just getting used to them.  It’s a crazy ride – choosing autism medication.

Back to the day I thought about in the store.  I was picking up Casey’s medicine and had all three kids with me.  Casey was trying to get away from me – she was not happy to be in the store.  Mandy was playing peek a boo with Rob to entertain him.  As I turned away from the counter with her medicine, a woman approached me and asked about Casey.

I was honest and told her she had autism, as did my son.  She nodded and I started to turn away.  She shocked me when she said she hoped that medicine wasn’t for Casey.  I just looked at her as she went on to tell me that medicating my child was dangerous and that I had no idea what the side effects or long term damage might be.  (as if I hadn’t considered that!)

I told her as politely as I could that what I did with my child was between me, my child and our doctors.  She then told me that giving her medicine to make my life easier was a terrible way to be mom.  By now, I am livid and praying that I don’t lose my temper in front of the kids and in the middle of the store.  I started walking away and she actually got in front of me.

So I politely told her to get the hell out of my way.  She stood right in front of me, still telling me how terrible it was that I gave Casey “poisons” that could ruin her life.  I pushed my cart right at her and I’m sure my face clearly showed  my anger.  I was ready to hit her with the cart to shut her up.  Luckily, she must have realized she went too far and stepped out of the way.

I still find it unbelievable that people think they have the right to comment on what medications I give the kids.  I discuss medicines at length with their doctor and I do research and talk to pharmacists for their opinion and what to watch for.  I’m not being irresponsible.  I don’t like that they need so much autism medication, but they do.

I’ve wondered whether the kids notice a difference in themselves with their medications.  Last year, I realized that Casey wants hers.  She knows she feels better with it and if I don’t have it ready for her to take, she will ask me for it.  Rob has only recently asked for his.  Whether it is a habit for him or he feels better, I don’t know, but he wants it, too.

If you are trying to decide about autism medications, talk to your child’s doctor.  If you still have questions, ask for a second opinion.  Ask your doctor if they will have someone who uses that medicine to call you (They can’t give you that information as it violates privacy laws, but they can ask someone if they would be willing to talk to you.)

Talk to other parents whose child has autism.  See how they feel about the medications their child is taking.  Ask about side effects (but remember – medicines react differently for everyone, so take all advice with a grain of salt.)

Do your research.  This is a huge decision for you and not an easy one to make.  Maybe you will have a breaking point like I did.  Or you can think of it this way – your child’s brain doesn’t work like a “typical” brain and needs help.  If your child was diabetic, you wouldn’t think twice about giving them insulin.  It’s just something their body needs.

Never feel like a failure for giving your child medication.  By the time you have reached this point, I’m sure you have tried everything else you could think of – just like I did.  Don’t let anyone make you feel guilty for your choices.  Love your child and do what you feel is best for them.  That’s all any of us can do.