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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.

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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!

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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!

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Autism and Halloween Fun

Autism and Halloween Fun

I’ll be the first to say – Rob never enjoyed trick or treating. He didn’t like the costume (I was careful to pick something simple for him to try). He really didn’t like going up to strangers and he didn’t care about the candy. Mandy loved going. Casey wanted the candy, but her desire to go had more to do with “it’s what you are supposed to do” than any real understanding of it. And, when they were little, autism wasn’t well-known. I heard many comments about them not saying “trick or treat” or her trying to grab a certain piece of candy. I don’t miss it. The only times I remember Rob really enjoying it was the years my brother brought his 4 wheeler over and pulled them in a wagon. Rob loved that! (He may not look like in the picture- he was ready to ride and not sit for a picture! 😊)

When they got a little older, there wasn’t trick or treating for a few years and then I told Casey she was too old to go. I bought a little candy for them and we visited grandma and grandpa on trick or treat nights. Two years ago, she wanted to pass out candy and looked forward to that for weeks. The big day came and she laughed and giggled for hours. It was a cold, damp evening. She handed out candy to two children and said she was done. Guess who got stuck handing out the candy? (It had to go – we had too much to keep around here! 🙂 )

It also helped that our county board of DD held a Halloween dance every year and they got to wear their costumes to Hopewell. She still asks about trick or treating, but only for “da widdle kids.” Of course, this year, their dance had to be canceled so I decided to have a little party here. (No worries – only a small family group. 🙂 ) Casey is very excited about it and wants to pass out candy before it starts.

Holidays can be so hard for families like ours. Our kids don’t always understand that others think they are too old for some things. Personally, if your adult/teen child wants to go, take them! If someone doesn’t like it, tough. These days, most people are more aware of disabilities and are much more accepting. And you can always “educate” the idiots who choose to say something mean to your child. Some people have purchased blue pumpkin buckets (for autism) for their children to use. Others feel this isn’t necessary. Again, you need to do what you feel is best.

I am a firm believer in Casey and Rob getting to try everything they want to try. If Casey truly wanted to go trick or treating this year, I would take her. The people in our neighborhood would be happy to give her a piece of candy and I so appreciate all of them for that. Honestly, she just wants to celebrate the holiday in whatever form we choose. I did buy candy to hand out and I’ll let her try that in her fairy costume. He chose to wear a clown hat and tie this year. (And he has worn that hat many, many places already! He’s easy to spot! 🙂 )

We have our own traditions for enjoying each holiday and that may be what you need to do, too. If you are truly worried about the reaction your child may get trick or treating, talk to a few neighbors beforehand and explain the situation. That way, you can relax and enjoy watching your child try something new. Or go to a “trunk and treat” that many organizations have. These are often held in the afternoon and in a smaller area so it might be easier to keep track of a child who tends to run.

Maybe your child would enjoy passing out candy. Or decorating a pumpkin with paint or stickers instead of scooping out that yucky stuff. If your child can’t wear a costume, decorate a shirt for them or choose a silly hat. There are so many options to make this holiday fun and relaxing for all of you! Don’t feel like you have to follow everyone else’s ideas. Our lives are unique and our holidays should be, too! The smallest thing could make your child very happy – don’t compare what you did as a child to what your child might enjoy. Keep things simple for all of you!

As for us, we’ll be carving pumpkins this week. As much as Rob hates getting his hands gooey, he loves carving pumpkins. They will both carve the same faces in their pumpkins that they have for years. He might surprise me as the pumpkin he brought home from Hopewell is different, but I’m guessing someone else drew the face. Maybe not. He’s constantly surprising me these days.

Happy Halloween to all! Be safe and have fun!

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Autism and Dancing in the Rain

Autism and Dancing in the Rain

I told Casey what the title was and she said, “No fanks. Wet!” Rob just looked at me and shook his head, but honestly, he would be the one most likely to dance in the rain with me. He may think I’ve lost my mind, but most days, he could be close to the truth. 🙂

But, really, when I think of dancing in the rain, I think of being happy no matter what the circumstances you are living in are. You look for the bright side in the clouds and know that rain has to fall so you can see the sun. (If life was always perfect, how would you know? If you had nothing to compare it to? 🙂 )

There are rough days with autism. There are days it is easier to cry than laugh or days you scream into your pillow. Everyone has those days. Sometimes, those rough days last for weeks, months, even. And these are the times that it is most important to dance in the rain.

Dancing in the rain is silly. It’s something a child would do. And sometimes, that is exactly what we need – to be like a child again. Splash through puddles. Color with crayons. Eat Fruity Pebbles right from the box. Have peanut butter for supper. Take a bubble bath. Blow bubbles – finger paint – play with clay. Read a comic book. Watch an old cartoon (Bugs Bunny is the best! 🙂 ) My point is, just for a minutes, let your adult self relax and forget that the laundry is waiting, bills need paid, groceries need bought, lunches need packed, and on and on.

Because here’s the thing. If you don’t dance in the rain and have fun once in a while, life with autism will drag you down. It will exhaust you. It will make you feel incredibly lonely. It will put you on edge. And sooner or later, you will crash. I should know – I’ve been there. It’s not pretty. I’ve had more minor “crashes” than I can remember. And major ones I’d just as soon never think about again. But, if I forget, I might fall back into the same old habits and I can’t let that happen. Casey and Rob are depending on me.

I know it’s hard to get breaks from your child with autism. I have supports and I still find it hard (but honestly, that’s more my issue – some times, I just want to stay home and not bother with taking them somewhere so I can have that break). When I’m tired, it’s just too much effort.

Our life with autism is fairly simple (in terms of autism! 🙂 ) right now. Casey and Rob are happy and doing well. I do what needs to be done to support them without really thinking about it. We stick to a schedule (though, that was altered the last two nights and they did really well!) I know what we need to do if we want to go somewhere and plan accordingly. But – we still have rough times. I still need breaks. I can’t let myself get so down and tired again. It’s not good for any of us.

I know I’ve said this to you before but it needs repeating so you really understand. You have got to find ways to have fun – to laugh – to relieve stress. You need to escape the reality of autism once in a while. You need to find the you that isn’t just an autism mom or dad or grandparent or sibling. You have to be you, too, or you will crash. Being a parent is hard. Being a special needs parent is super hard. Take a break. You need it. You deserve it. I promise – the dust will survive on the furniture and the laundry won’t run away. It’ll all be there when you have the energy to tackle it.

So… for now…. go dance in the rain and laugh! You deserve the fun!

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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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Why We Are Autism, Apples and Koolaid

Why We Are Autism, Apples and Koolaid

I know it’s an unusual name for a blog and Facebook page, but it fits us. I’ve been asked a few times in the last month why this is what I chose to call our blog. Since I’m not feeling the best today (just a head cold – yuck!) and my head feels foggy, I thought I would just share our first post with you. We have gotten so many new followers that may not have gone back and read older posts and it’s a really funny story… now, anyway. The day it happened, I was not a happy person.

Enjoy! Laugh – if nothing else, this a good reminder that even terrible days can be funny later. 🙂

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Welcome to the first post on Autism, Apples and Kool Aid.   I’m the mom of three amazing kids – and a wonderful son-in-law!   My oldest daughter, Casey, and my son, Rob, both have moderate autism.  Our autism journey started almost 28 years ago and what a wild ride it’s been!

I’m not here to tell you that autism is easy – but it isn’t the terrible disaster that so many seem to think it is, either.  My hope for this blog is to share my circus in the hope that families who are on this journey with us will share our laughs and our tears – but ultimately realize all of our kids are our most precious gifts.

The name for this blog came from one day that is stuck in my memory.  A day which has proved that, sometimes, autism sucks, but sometimes, it’s our reaction that causes more problems.

Rob was 8 or so at the time and we had just finished remodeling our dining room.  I was in another room when I heard thump, rumble, rumble, crash, splash and Rob’s giggles.  What the heck?  As I ran towards the sounds, I heard it again – thump, rumble, rumble, crash, splash and giggles.  I found Rob in my beautiful dining room with an apple in his hand and red Kool Aid running down my walls.

It took a second to see the plastic cups of Kool Aid lined up on the table and for the dots to connect.  “Don’t throw that….” I shouted as he launched the apple across the table.  It connected squarely with the next cup in line.  The cup flew in the air, the Kool Aid went everywhere and Rob doubled over giggling.  I just stood there and looked.

When he picked up another apple, I sprang into action and grabbed the apple from him.  He laughed, hugged my legs and took off for his room.  I was left standing there watching red Kool Aid run down my walls, off my curtains, down my windows and drip from the ceiling fans.  I was furious!  What in the world possessed him to do something like this?   He had gone bowling a few days before and I guess he decided to make his own at home.

It took me forever to get the room cleaned up.  All the while, I’m mumbling not so nice words under my breath.  Steam was probably coming out of my ears by the time I got done.  I mumbled about autism… about red Kool Aid…  about sticky floors…  about not being able to handle this anymore.  I’ll admit, my anger took over.  Now, this is funny.  At the time, I was ready to explode.

Finally, the room was clean.  I was sweating like crazy and still mad about the mess…. and I flipped the ceiling fan on.  You guessed it – in my anger, I had forgotten to clean those blades…. and little spots of Kool Aid flew all over the room again.  My temper exploded and I began to clean again.

But – after the anger passed, I realized that day taught me a valuable lesson about living with autism.  Often, our reactions to what happens make problems worse.  Had I stayed calm, I would have thought to clean the blades (I hope!).  I wouldn’t have been so hot to flip the fan on.  Had I just cleaned the room and laughed with Rob, I would have only had to do it once.

I’m not always successful, but I try – really hard – to make sure my reactions to my children’s behaviors don’t cause more problems for all of us.  Sometimes, my reaction is simply to walk away until we are all calm.  Walking away isn’t always bad.

So, welcome to my circus.  Come back to soon and let’s learn together how to live, laugh and love with autism!

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Autism and Two Very Different Doctor Visits

Autism and Two Very Different Doctor Visits

We waited several months for our appointment with a specialist for Casey. Somehow, in the days before the internet, my mom found a pediatric neurologist who specialized in autism. In 1992, there weren’t many doctors who had even heard of Autism. Before we went to this appointment, we strongly suspected autism, thanks to a TV show Mom saw and a book that show recommended.

It was a two hour drive. Casey always has been easy to travel with so the drive was no big deal. The waiting room was full of toys and she happily ran off to explore while I filled out paperwork. Then… The nurse called her name and all hell broke loose.

She refused to leave the toys. She kicked. She screamed. She tried to beat her head on the floor. I was due to have Rob in just a few weeks and couldn’t easily get a hold on her. The nurse told Casey she could take a toy with her and she calmed down enough to choose one. I was so embarassed (now, 28 years later, it wouldn’t faze me. 🙂 ).

Casey refused to get weighed. She wouldn’t stand for her height. She turned away for a temp check. The nurse could have been a picture on the wall for all the attention Casey paid her. She was focused on the toy and that was that. Nothing else mattered.

When the doctor came in, she never looked up. He said her name. She ignored him. He got down on the floor with her. She turned her back. He reached around her to play with the toy. She moved to a corner with the toy. He asked her what color something was – anything to engage with her. Nope. Nothing. She knew he was there, but he had nothing she wanted so she didn’t care.

He asked me several questions and with each one, I knew for sure she had autism. When he asked what I thought was going on, I simply said, “Autism.” And he agreed. In all honesty, I didn’t think much about it. She wasn’t sick. She wasn’t in pain. She was still my sweet little girl. I had no clue what our lives would become within the next year.

The meltdowns started in earnest. Almost every day. Nothing I could do would calm her down. Plus I had baby Robbie and toddler Mandy. Life was exhausting. I rarely thought farther in the future than the next day. She was in preschool all day with speech and OT. At that point, she had a few meltdowns at school – most were at home. (I think she held it together as long as she could and then just had to let go).

She had a few scripted sentences she used when she wanted something. Few words, except Mandy, Robbie, cookie, potty and drink, were spontaneous. She sang entire songs – always with perfect pitch… Knew her ABC’s, could count beyond 100, knew more colors than I did. But she couldn’t say Mommy when she looked at me.

Rob was 7 before he saw the neurologist officially. He went to one of Casey’s appointments. He said hi to the doctor. He said mommy when the doctor pointed to me. He sat quietly and shared his toy with the doctor. He looked out the window. But, he couldn’t answer simple questions. He had major sensory issues. He rarely talked. He liked his routine. He was completely opposite of her. He got the same diagnosis.

Fast forward to last week. I took them for their annual check up with their neurologist. Casey jumped on the scale, insisted the nurse check her height and held her arm out for BP check. While Rob wasn’t as excited as she was for all of that, he did everything they asked.

When the doctor came in, they both looked at him and said hi. They were both able to answer several of his questions on their own. Casey told him what crafts she liked to do and that we wouldn’t have a fair this year. Rob told him he went swimming and Bob is his friend. The doctor was so impressed with how well they are doing – especially with so many things changed this year! He said many of his patients were having a rough time, but I told him they have just accepted the changes. (Not always happily, but who has??? 🙂 )

I thought of all of this driving home the other day. We can even stop for lunch and go shopping after their appointment. Even a few years ago, that wouldn’t have been easy to do without someone else with us. Casey did give me a scare in one store, but no meltdowns, no anxiety yelling. Just shopping for coloring books and blocks. Like a typical family.

I know some of you might be going through a terrible time right now. You may be living with things I never had to. But, please, never stop hoping and never stop believing your child will grow and change. People that knew Casey when she was in elementary school are shocked to see her now. Keep pushing. Keep believing. Keep your faith!

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Perceptions of My Life as an Autism Mom

I was at an event a while ago and two different people made comments about the life I live. I didn’t think much about it while I was there, but driving home, I wondered about their observations. One is a close friend, the other an acquaintance. I started thinking about the perceptions people have about me and my life.

One perception people have about my life is that it’s never quiet. Ok – I’ll give them that one. There are quiet times in my house, but only when the kids are not here or are asleep. If it’s too quiet when they are here, I go see what they are up to. But – doesn’t every parent do that? And how many homes are quiet when the kids are home? Why do people think my house would be any different than theirs?

They may hear kids talking in their home. I do, too. Often a little louder and not as understandable as most people, but talking just the same. They may hear toys. Yep, got that, too, since Elmo and Casey’s toy piano can be heard often. They may hear music or movies. Yep – the same movies over and over again. But Casey’s music changes, depending on her mood.

Another perception is that I never get any sleep. When the kids were younger, this was true and, at times, we still have rough nights around here. (crazy weather and full moons are not my friends!) I finally found the right combination of meds for Rob to help him sleep, so most of the time, we all sleep well. (Knock on wood! 😊)

Here’s a good one.   People think I’ve got the patience of a saint.  🙂  🙂  And I do – with my kids, with people who have special needs.  But – if you are rude or obnoxious…  hmm… nope.  My patience stays with those who need it.  🙂  I will be nice as long as I can, then all bets are off!

Honestly, the perception that bothers me the most is that we need pity. I get why people might think this, but really, it just irritates me to no end.

Why would anyone feel sorry for us? Casey and Rob are happy. They have everything they need and most things they want. (I say that because right now, they want to ride rides at our county fair, which has been canceled. Thank you, covid… Now go away!) They love going for walks, buying coloring books and socks, playing cards and construction paper.

Do they have struggles? Sure – but we don’t need anyone’s pity. We need compassion and understanding. Every family has struggles – some are just really well hidden and ours are loud and more obvious at times. 😊

Yes, my life is different than most people. It’s different than my autism mom friends. But that’s ok. Being different keeps life interesting and fun. Yes, I do feel lonely at times and, yes, I definitely get tired of helping with baths. Yep – get tired of worrying about the future. Yep – get tired of always needing someone to be with Casey and Rob.

But – I also get to spend evenings on the patio with them, listening to giggles. I still get to believe in Santa and the Easter Bunny. I get to celebrate every… single… holiday. I get to have supper with them every night and tuck them in bed. (Usually more than once! 😊)

Instead of just assuming what my life is like, ask questions. I don’t mind and would much rather someone ask than not. The only way to make the world more accepting of Autism is to get information out and spread it around! That’s why we go places. Some times, our days out don’t go as well as I would like, but that’s okay. I can have a good cry (either on sadness or anger) and move on.

Our lives are different than yours. And I wouldn’t have it any other way. 😊

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Autism and Constant Supervision

Autism and Constant Supervision

Since I went back to school a few weeks ago, I’ve needed help with Casey and Rob for about an hour in the morning before they can go to Hopewell. My parents, Mandy and Bob (Rob’s favorite staff person) are all helping. This week, a conflict has come up and I have no one to help one day. I stressed about it and asked who I could think of if they could help, but finally came to the conclusion that I would just have to go into school late. I am lucky and grateful that I can do that, but it just reminds me again that I still need a “babysitter” for my adult children.

Never being able to leave them alone is not something you think about when they are little – no one leaves little children alone. And you are too busy to think about the future. Then, suddenly, they are teenagers or adults…. and you still need someone to be with them all the time. Forever.

Before anyone misunderstands, I do know how lucky I am. Casey and Rob don’t play with knives or matches or the stove. They don’t eat or drink things they shouldn’t. They don’t bother medicines. They don’t leave the yard or wander away at night. I am able to take a shower without worrying. Or go outside for a few minutes. Many, many autism families can’t do any of this. They have to keep an eye on their child all of the time – no breaks for the bathroom or a shower. I feel for them. It’s a tough life – you love this person so much, but at the same times, you desperately need two minutes to yourself.

But – sometimes…. I want to be able to go with my friends without worrying about who will stay with them. I want to sit by a campfire without needing to go check on them every few minutes. I want to be able to get groceries or run errands without their “help.” 🙂 They have come so far since they were little and it was nearly impossible to take them to the store by myself. (Casey had meltdowns and Rob had sensory overload – and they both liked to dart off.) We go places all the time now and I love it, but …. I just never thought I would need a babysitter for my adult children.

I never dreamed that I would be stressing over an hour on a weekday morning when they were adults. Sometimes, the reality of our situation slaps me in the face. As amazing as they are and the amazing things they learn to do every day still doesn’t make it safe for them to be alone. I doubt either would leave the house in the event of a fire (we have talked about it – many times – that they are to go to the garage when the smoke detectors go off, but they don’t even acknowledge that it is beeping). They count on someone else to keep them safe. Neither will use the phone to call for help.

I always laugh when someone tells me to just “find someone” to stay with them. Really? Like I’m going to leave my communication- challenged children with strangers? I don’t trust easily and have been burnt by some people I did trust. So, until I know someone really well, they don’t spend time alone with my kids. Period. I even have a hard time when new staff starts at Hopewell. I can’t see them interact with Casey and Rob and I can’t see what they think of the new person. So – I just don’t trust. I hate being like this, but I don’t plan on stopping.

I’ll admit – there are times I’d like to go some place and I just choose not to go instead of asking someone to stay with the kids. I know they need to learn to be with other people and I know I need time away, but I hate asking for help for “fun” things when I need help for important things, like work. I just get tired of needing help. It’s just not something I ever thought I would have to do when my kids were adults. Even when they were both diagnosed with autism, adulthood wasn’t something I had time to think about much. The here and now was always more important than the future.

But, see – the scariest part of them always needing supervision is the future. The future when I can’t take care of them anymore. The future where I have to trust someone else to watch them constantly. Mandy and Cory always tell me not to worry – that Casey and Rob will always have them and I love them for that, but they need their own lives, too. I don’t let myself dwell on the future much as, sometimes, those thoughts are guaranteed to bring on a crying fit.

So we’ll go on, as we have been. Doing things together and taking an extra person when I may need more than one set of eyes. (Don’t let their size fool you – Casey and Rob are fast!!) Even going to the bathroom when we are out is hard – I can’t assume they will stand and wait for me. Some days, they would. The next time – that’s a big no! See? Unless you have a child with autism, you wouldn’t think about not being able to go to the bathroom if you are not at home. It’s something we all live with.

I hope each of you has someone you can trust to be with your kids when you need a break. Take breaks and take care of yourself or you will burn out. Then who will take care of your child with autism? Just like when you are on a plane – put your oxygen mask on first, so you can help others. 🙂